I am the caregiver for my husband who has dementia. I’ve been caring for him for 3 years. He doesn’t talk to me unless I say something to him; he only gives a quick answer. There is no conversation. I feel like I live with a dead person. I don’t like him and I’m not in love with him anymore. I think I have emotionally divorced him. Is this normal?

-Deb

Deb, please rest assured that your feelings and emotions are actually not only common, but normal. As dementia progresses, the person who is faced with caring for a loved one changing daily into someone they no longer recognize must live with, care for, love, try to communicate with and be on call 24/7 for a person who can now be a complete stranger to them.

It can be emotionally challenging and likened to someone with post traumatic stress syndrome. It is difficult to say the least to start each day not knowing what the day will bring. Who will your loved one be today? How will they respond to daily interaction and how will they have changed and progressed? At times, it can be lonely, overwhelming and exhausting and then you don’t have your loved one to confide in and lean on to help with such an overbearing task. How ironic, the one person who would have been your “go to” for such things is now the one you need support and understanding dealing with. Guilt and loneliness are also huge side effects from being the care provider for a spouse and to not like the person they have become is understandable. They might have different personalities, likes, thought processes and they just aren’t the person you have grown with and gotten to know and have expectations from through the years.

Yes it is normal, but the one thing to keep in mind is you will survive this very difficult time and must live with the choices and decisions you make now. That being said, you must also do what you need to do to survive each day as best you can. Do you have a support group? The Alzheimer’s Association in your area should be able to provide you with a group or a local church may offer one as well. If possible, talk to your clergy, a counselor or someone you trust and can be open and honest with. Exercise is also a great way to help yourself and if you are not already, try to start a routine that includes some sort of physical activity (other than laundry, dishes, yard work, etc.) Take care and stay strong.

126 thoughts on “Is it normal to fall out of love with your spouse?

  • Janis Rahman

    I have been working with someone who has Alzheimer’s for almost nine years. I have recently been reading “On P,unto” a book by Greg O’Brien who suffers with early onset Alzheimer’s.
    This has given me so much insight into the emotional upheaval of this disease.
    I encourage anybody dealing with this horrible disease to read it.

  • Carol Wright

    I was helped by dropping expectations and verification of the historical ME… I did not expect nor demand that MOM recognize me as her “daughter” nor expect that she would appreciate all I did for her for 13 years.

    I did not dwell for the loss of the person they WERE. I realized I could love a cat/dog for what they were, and not expect conversation. I imagined mom as a dog/cat personality. As her mind deteriorated, I related to her as “bird mom’..then my pet iguana.

    What you can experience is pure deep BEING, a recognition missing ironically in our daily interactions

  • Charmaine Liang

    I thought I was the only one. Over time you fall out of Love with your loved one, but the feelings I have is deep pity and you almost become the parent to the Alzheimer’s sufferer. I can go on forever, but at a time when we should be travelling & enjoying our lives together, with the children more grown up now, you become a parent to a young child again. How sad & heartbreaking??. My husband has had early onset for about 10 years now, he is 66. I am 58.

      • Maureen

        That’s me also except that I have been diagnosed with terminal cancer. My thoughts and emotions are all over the place

      • Merafe Peschke

        My husband’s since 2009 with Parkinson so many years taking care of him my feeling tottaly change bcoz of my stressed, anxiety, depression were not conversation his answers if I asking something.i CNT handle anymore everyday I cry.

        • Pat W

          I have the same situation. You are not alone. This is so difficult with no help. No talk, only nasty comments from husband in nursing home. I am not wanting to go to see him but must, as nobody else goes.

          • Mary

            This is me too . My husband has BVFTD and is in a nursing home. He says horrible things to me and never hugs me anymore. It was our 54 th wedding anniversary yesterday nothing from him not even a kiss. I too question my love for him anymore. It is so hard . I see all our friends retired and enjoying their time together but not us. I cry frequently and really feel low and just a means to his needs. It is lovely to share with others experiencing the same.

            • Mary

              Me too. His demands and verbal abuse to me is awful. I am just a means to his needs. Likewise I have to visit the nursing home as no-one else goes. It is very difficult

            • Christopher Evans

              Me too… We’ve been married now for 5 years this year together for 7 years. He is 55 now he was diagnosed at 50 I am 44 and I had to get a part time job just to get away. My mom also has it she is in late stages.. I noticed that even I am having nerve issues – my head shakes when I think of him dieing.. He is my world I love him but there are times I say things out of anger and I regret saying it later cause I know he can’t help it.. So I feel really guilty of emotional abuse towards him and hate my self… He has become physically violent at me in the last 5 years the last time I was paying rent and he came inside the business office and started cussing at me and ripped my shirt he just bought me about a month or 2 before that. Anyway they called police he was arrested for domestic violence and battery and not to make contact with me.. but I made contact with him and everything has been ok.. since we left where we lived. I just don’t know what to do minute by minute most of the time.. He always talks about his days as a international Corporate Attorney of 25 years he started at age 21, he graduated high school on a Friday that same weekend on Sunday he also graduated college with his 1st degree at 15 but now he just don’t care about anything and I’m very sad to see him like this…

              • Shirley Czerniawski

                I don’t k ow why I say mean things to him because after I get him in bed for the night I feel so bad and then the next day I try harder not to say mean things and I try harder to show him love he still tells me he loves me

          • Deborah Demeo

            Omg..You are living my life!…I loathe this disease and I can honestly say I have fallen out of love with my husband… He has early onset for 3 years …hes 62..and I’m 56..living a nightmare that I truly cant handle ..

            • Elizabeth

              I guess I too have become an unwilling member of the sisterhood. I hate coming home from work any more. The minute I walk in it’s all the things that went wrong during the day and left for me to fix. Am I a horrible person for wanting the day to come when he’ll need a facility and I can have some semblance of a life

              • Lily Long

                I also think I a part of this sisterhood too. Unfortunately my husband still functions on high level in areas of finance as he was the president and coo of one the largest companies in the world. He can fool people and refuses to be tested. But our life has become a living me hell. He now treats as if I am one of his former employees and does not want to see people at all. He refuses to see a neurologist. He has many health issues, now gets words very confused and is obsessed with the news. Misplaces everything, needs help dressing. Has left his phone in the refrigerator etc. He is very angry with me.
                Others soothe him, such as doctors and attorneys, staff not wanting to be cut off the money train. This has been going on for about six years. I do not like him anymore, but still want to care for him, but feel it may kill me first, even though I am quite a bit younger. I am so isolated, not being able to share with others. I do not have family.

                • Jo Ann Fowler

                  Well you are my story too. My question is
                  What do we do to fill that need for companionship
                  My husband is still high functioning but loves to go shopping. He would be happy with a closet full of new clothes weekly…however forgets they ate there. In church he puts his arm around me but this is just routine. He is a tv addict. Old repeats daily he has seen before. Sad..I want someone who puts me first again. How do you all fill that void????

                  • Barbara Hannah Bready

                    I am in the same position, life seems so sad. Actually the best part of the day is when he is asleep. He treats me as if I am the help, will not listen to anyone fights with me. I am so sad.

                  • Pamela

                    I feel exactly the same and have the same thoughts. Thank you for helping me not feel alone

                  • Claudia Veiman

                    I feel the same but am 76 and I am sure he will out live me. So I pray for strength to keep going ( the crazy one day at a time) I do get out to play bridge or visit my sister

                  • Susan

                    I also dread coming home. The weekends are torture when we are together all day. He looks for things to needle me about and he is always angry with me. I say things to him that are not nice and the guilt consumes me later. Not sure where the fine line is as to if it is the dementia talking, or him. He does not take care of any huge decisions or finances. Everything has been on my shoulders for some time. I am 66 and he is 69. I try to keep busy, but if I spend too much time away he gets jealous. So sorry for what you are going through.

                    • Lisa

                      I had noticed subtle changes in his personality and attitude towards me over the last 3 years, we have been married 19 years, he has recently begun to lose things and tell me I moved them. He has also made some rater large monetary mistakes .
                      He acts angry and says these things are my fault. He is pleasant sometimes but can change to sullen and quiet in a moment.
                      He is very jealous of anyone or anything that takes me away from him.
                      He is 83 I am 60 and i am miserable and do not know where to turn.

                      • Jean

                        Now I know I am not alone. My husband has been progressing for 9 yrs. I’m younger than him by 8 yrs. I had to quit my job to take care of him. I’m no longer able to get paid help to come in so I can get out for a few hours any more. He has to know where I’m at all the time. His new thing now is he just wants to die. When he takes none of his word my any sense at all. I hate my life.

                      • Nancy

                        My thoughts too. Feel guilty but he exhausts me daily.

                      • TVDavis

                        I, too, hate coming home from work. My husband turns 76 in less than a week, but I’m younger, and I feel like I got cheated & duped. I think doctors and others knew something was wrong & just kept saying it was “normal aging” when I expressed concerns about forgetfulness & strange emotional swings. I have to travel in about two weeks & I am exhausted from the strain of caring for him, looking for aides that won’t break or steal everything in my house, that also don’t eat up my entire salary, just to sit and watch TV with him all day while he eats a sandwich. He feel out of bed in his sleep less than two months ago, and he is now a whole new level of awful to deal with. The hospital trained him to wet the bed, so now I’m changing diapers and bed pads every day, while still getting him up & to the bathroom all night, because he still soaks the damned diapers. I have an aide come in for a few hours three days a week, and I have to do everything anyway. She couldn’t figure out how to open a mouthwash bottle! For $22 US per hour.

                        Sorry for the rant, but I completely understand those who say they’re widows. I got two years of an ok husband, and six years of a slow-moving disaster that I’m alone in dealing with.

                      • Jeff

                        I can totally understand. I think I actually hate my wife now. Haven’t been in love with her for sometime. I have been with her 44yrs. Wow.
                        I think what’s it going to be like living alone. Great I hope. I’m in great shape workout at gym. Getting into body building. Wow I’m 69 look 50’s. She’s always wanting sex. Not why? Haven’t slept with her for 10yrs. Wow.
                        Anyway it’s very hard I’m also alone no kids parents family to ask for help.
                        Stay strong you’ve made it this far

                    • Anthea Millier

                      Oh , I understand I am the same….don’t think I will cope . I don’t love him and he has not loved me for years ….

                      • Mary

                        I have the same going on. I’m not in love with him anymore. He has hated me since he came home from the Hospital after open heart surgery. I know that should be a different group. The comments are the same because pumphead causes dementia and Alzheimers. Even when doctors won’t admit it. It’s a nightmare that I can’t wake up from. Divorce has been an option many times. People keep talking me out of it. I’m also raising our Granddaughter. Her and my kids all see the difference in him.

                    • Debbie daricha

                      I totally hear you I’m in the same boat it’s sooo frustrating omg!
                      I feel like I can’t take this anymore!
                      He can’t remember anything if I don’t lay it out he forgets..
                      Today he forgets his water bottle that he had with him always .. oh I must have set it down to take a drink I’m like ok I’ve told you to put back in your lunch bag every time.. this is the 3rd water bottle in 4 months..
                      I’m hating him more everyday I call him stupid idiot I can’t help it!
                      Not fair and he doesn’t think he has a problem really!!

                    • Andrea

                      I thought I was the only one! I hate myself for feeling this way. He was the love of my life for so long. I feel so trapped now. We never had children of our own and his daughters with his ex are “too upset and can’t handle” dealing with his Alzheimer’s. Same with his siblings and his best friend … they can’t bear to see him like this. So, it’s just me …

                      • Freida

                        Hi , people just don’t understand the loneliness a carer feels. We had no children together either and my husbands large family fled to the hills once Dementia was diagnosed. I feel that his life has stopped but so has mine and I was not ready to slow down yet. Miss the conversations,miss the news and gossip.miss the affection. The daily little comments no longer exist. Carer just becomes a parent again. At 20 that was ok at 72 it’s not ok.. we Carers are trapped….

                      • Idalia

                        Don’t give up on him his friends his family did but you don’t give up on him I know it’s sad hang in there with him

                    • Lorry

                      Your situation is like mine. My ex has had dementia for 4-5 yrs and i fell out of love and divorced him. He’s 63, me 61. I couldn’t take it anymore. So many suicidal threats.

                    • Pauline

                      Ah!!! I know exactly how you feel. I have a huge sense of responsibility towards my husband but I long to have someone to talk to share laughter with hold a hand and for once in a long time feel loved. I feel very guilty for wanting these things

                      • Nancy

                        I feel the same way. The responsibility looms greatly.Don’t feel guilty but I understand as I feel the same. Would love to have a normal conversation with someone. I’m so angry most of the time. Is it wrong to long for companionship?

                  • Peggy Maajor

                    I have helped him since 1994. He has not really done much for me. I have broken my health completely down and now he is going to a nursing home and I will be left with no where to live

                    • Carly Babcock

                      Peggy, I realize that it’s been 5 months since you wrote this on this help line. My name is Carly and my husband has cancer and he also has dementia. He doesn’t know who I am and he believes there are two of me. He keeps doing things like calling doctors offices over and over again. I feel like my health is deteriorating and I suffer from major depressive disorder and fibromyalgia. I was curious what happened with you and your husband. When my husband dies or leaves here I will be homeless too. It’s so beyond anything that I ever could have imagined and no one in my family wants to hear a thing about it. I don’t have any girlfriends or anyone to help me leave the house. I don’t drive. Please, let me know how you are when you get this note. All my heart I am sending you love and support. Carly

                  • Janet nash

                    My 60 yo husband has Parkinson disease for the past 14 years. Recently he was diagnosed at 58 yo with PD dementia.
                    I share all the same feelings you describe it’s so hard

                    • Pam Abbey

                      My partner is 53 years old. I knew he has had Parkinson’s for about 3 or 4 yrs. minimum. He just got prescribed sinamet. He refuses to pick it up. I know I cannot take care of him in re: to changing diapers etc. I did that for his mother with Parkinson’s. His anger and paranoia is out of control sometimes.I feel like that is terrible to say. I feel exhausted.

                  • Ellen

                    This is my life also , except he is very mean . Verbally abusing me . Yelling continually. Argues … it is not fair. He was not a good husband and now I must take care of a man I don’t even like let alone love.

                    • TerriLou

                      Gosh! I’m on the same page!

                    • BRENDA Charlton

                      I understand exactly how you feel.

                    • Barbi Strom

                      Same here. It sucks!!

                      • Susan

                        Susan,
                        Hello. I’m Susan too. I am 66 also, and my husband has become very different from the closest friend and companion that I have known for 30+ years. I say things that I try to justify to myself later. He’s become very childish and self absorbed. I met him after I had spent 13 years in an abusive relationship. I learned what it is like to be truly loved, and now I don’t have that husband. It is sooo lonely, sad, and awful. I need time away to enjoy something, to think, and to recover some strength. I need to have something to look forward to. I need to know that I will have days off

                  • Bobbi

                    My husband and I had been separated for years when he was diagnosed with Alzheimers. He had never bothered to put a life together for himself after I left. He had been unfaithful and emotionally abusive for most of the 27 years we were married. When our last child graduated high school, I made plans to move out when she left for college. And I did. Now years later since we never legally divorced, I am expected to be caregiver to my husband. I DO NOT want this role! I am nearly 70 and have raised my children. Whatever time I have left should not be spent taking care of this man who I do not even know or want to know any longer. Yet this is what everyone expects. Our daughter was there through the years of abuse and infidelity. She is an adult now and understands. Our son died right before his dad was diagnosed with Alzheimer’s and it’s all I can do to keep breathing through the loss of our son. Yet my estranged husband has no one else and I am the delegated caregiver. I want out!!! He needs to be in a memory care facility but no one is helping to make that happen. His doctors just tell me it is my responsibility. This is SO WRONG! He would never do the same for me!

                    • Rosalind Saker

                      You must get divorced, then the state will have to care for him. You have been through so much, you really need to be kind to yourself for once.

                    • Helen

                      I have been in a similar situation for the last twenty years caring for a husband who was unfaithful and un caring . I am now 72 with broken health and nothing to live for.

                      • Liz F

                        please don’t give up. You are worth more than you can imagine, and you are not alone. There is light at the end of a very long, dark tunnel. Get some help to find a place that will care for your husband, and let him go where they will care for him on a permanent basis. You can still be part of his life, and perhaps have the opportunity to care for him as a wife and not a nurse/carer. You deserve a life; make a decision to find it – it is not too late! I am 71, and after 15 years of caring for my spouse, I have felt broken and hopeless, and ready to give up. However, with help from family, friends and professional counselling, I have made a decision not to do that. It is very, very hard; but not impossible. I am still struggling with it, but I am determined to live again. I am a strong woman and I believe you are too. Fight for what you need; fight for your life. Good luck and have faith in yourself.

                    • Liz T. B

                      I am so sorry for your circumstances, My Husband has Alzheimer’s as well,?I am his caretaker the difference is my husband has been great all 27 years before Alzheimer’s, Please Let your Husband Doctor know that you need a Social Worker, they will be able to help you, Also A the Agency, A PLACE FOR MOM, they are great and very resourceful hope this helps, Stay Strong Ask God To Comfort and Strengthen You

                  • Donna

                    I’m 47 and my husband 56 was diagnosed 2 years ago with dementia alzheimer type. I honestly feel it started back in 2014. For me the question is… Is it better to sleep alone and feel lonely or sleep in the bed with your loved one and still feel lonely. I’ve been a CNA for years and can take care of people all day long without getting frustrated but I get so easily frustrated at home.

                  • Marty pongrac

                    Good morning, dealing with MS and dementia. Husband does not respond to some questions. All he wants to do is eat and watch TV. Head had his illness now for 40 years. I am little exhausted . I have to start every conversation. It is a long out process. I am 71 years of age and Husband is 72. Thank you for listening and letting me share with you. Be Strong

                  • Darlene Kelly

                    Thank u 4 your post it is helping me to pt things in perspective

                • Elisabeth Ketting

                  Yes i Am so with all of you. I felt he let me down. What is love. Yes i care for him, but in a different way. He had a fall And broke his hip he is still in rehab . I can not handle him At home any longer. I visit him every day for THE last ten weeks. One day he is good THE next day i want to shake him. When he sees me he says ouch help me.i like to scream. I know they can not help it. Sometimes I walk out crying because he keep on saying you don’t care about me. But I do. It is so difficult. I get support from my friends and pastor. My kids have no idea how it is day in

                • Pauline Smith

                  I found this really helpful to read. My husband us 81 years old, I am 66. I have cared for him for several years but had to put him in a nursing home 18 months ago. The feelings expressed are all I have felt and continue to feel. I felt I was a wicked uncaring person and this has given me a sence of perspective about the situation. I visit three times a week and he does not always know me now. I am married but don’t have my partner. I feel envy when I see couple’s walking the dog or having coffee. I miss the man I married.

                  • Kathy

                    I miss the man I married. He’s had Alzheimer disease since the spring of 2005. Yes, it’s lonely watching him sleep all day. I love the man I married almost 53 years ago and don’t like who I’m living with. I’m exhausted but thank God that I can care for him. What a mixed up person I’ve become!

                • Denise

                  My husband has heart disease, severe lung disease with a whole host of other medical problems. The last 6 months he started with dementia problems. It is difficult answering the same questions over and over again. Fixing the tv he messes up constantly and a lot of other problems. My patience is stretched to the breaking point. Even getting him to eat is a struggle. He just lies in bed all day. I have no life.

                  • Judy Clark

                    Ditto. Wedo not have family support so it’s all u to me. I feel very lonely and wish this wasn’t my life. Care for him 24/7 with NO appreciation back. He is very self centered – does not understand or care how much I do for him. I want out! After 43yrs I have had enough.

                    • Freda

                      I feel he same as you do …have been married for 52 yrs…I am 70 ad he is 72…he has many health issues and dementia for over a year now..my son does not understand and when he visits gets upset with me when I get upset with my husband…he is also incontinent and I am constantly cleaning up accidents and washing clothes and bedding…Almost everyday husband is nasty to me…gets a angry also when I check on him to take mess 7and insulin shots…if I don’t check he forgets…I am to the point i cannot do this anymore…I don’t sleep well…cry alot and get pains in my chest…some days he is good and others unbearable..I feel sometimes I want to pack my bags and just leave

                • Rbert C. Whittaker

                  I am 80 my wife who has Alzheimer’s is 76 and we have been married now for 55 years. She has had this illness now for about 28 months. We had long term health care which enabled me to place her in a senior care facility. She has become pretty much a shell of the person I once new and loved. I attended a support group for a while but many of them experienced more advanced issues and instead of being a help I found it depressing knowing I would soon face the issues they were. Long Term Health Care is expensive. About four thousand a year but considering the care that will be needed in a facility it will cost as much or more per month then the insurance per year. It is worth every dime if you come to need it. The love you once shared does change, it has for me. Some people will think it is terrible. First there is the anger, then sadness, being a lone not having the person that shared everything gone is like they died. There are no words that I can express to comfort you and none that will take away my pain either. Only those who experience this can fully understand. Good luck and best wishes BOB

                • Joy

                  Thank you for sharing your feelings dealing with a loved ones dementia. It helps
                  me feel much better about myself knowing I’m not the only one with negative
                  feelings towards my spouse while dealing with such a terrible disease and a
                  situation that seems to go on forever.

                • Kris

                  My husband has LewyBody Dementia. The doctors think he has had it for about 3 years and life expectancy is 5-8 years. He went from a score of 23/30 to 14/30 in a year. It’s so debilitating he thinks nothing is wrong but everything is wrong. He can’t dress himself he can’t eat without food going everywhere he says inappropriate things but thinks he is absolutely fine! He walks almost bent over dragging his feet and nearly always starts to fall. Yet refuses a walker or any assistance he argues with me all the time. I’m exhausted I don’t sleep there is nothing I can do. He punches and kicks at night yelling and grunting. It’s really scary.

                  • Kathy

                    Wow, I just came from a session with my therapist. I’ve been struggling with feelings of anger towards my husband. He “gave up” when he turned 70 and said – “I’m old” and stopped doing normal things. 3 years later he wouldn’t get out of bed, eat or admit that he had every right to stay in bed. I had to put him in a nursing home for rehab and he refused to try. They sent him home after I had to move out of our house into independent living and he crawled into bed again. He is back in a nursing home after I applied for Medicaid (after spending $20,000) and became his legal guardian. He thinks he’s fine and I’m just unwilling to take him home. I have a very hard time visiting and am upset for days. I’ve come close to having a stroke from very high blood pressure. He sleeps all day and spooks the nurses at night. He thinks it’s funny. He has done a 180 from his very buttoned down old self. I feel little compassion for him and it makes me feel guilty. Kathy

                    • Mary Jo

                      My husband (67)has been in a nursing home for 7 months with severe dementia. I know exactly how you feel. My husband acts the same way and it has gotten to the point that I have to make myself go visit him!

                  • Leisa Flynn

                    Hi Kris, My husband has that too. So many of the writers here echo exactly what I am going through. My husband thinks he is fine and the doctors do not help. They say, “You are doing great.” What they mean is that he is doing great for having this for 5 years. What he hears is that he is fine and that means any problems we have are caused by me or are my imagination.

                  • Amy

                    I empathize with you completely, and so appreciate your writing this. It has been more than a year since you posted this, but I am just reading it today and am so grateful. I am in a similar situation: My husband was diagnosed with Parsinsonian syndrome with dementia (in 2017), but actually he has every symptom of Lewy body dementia listed on the Mayo Clinic website. He began showing the first signs in 2014 – hallucinations (animals crawling out of walls), intense paranoia, difficulty moving, shuffling, inability to perform simple daily tasks – and though the hallucinations have subsided, many symptoms (such as his tremor, memory, and mood) have gotten worse. I am doing a very poor job of managing the progression of his disease – I have multiple sclerosis (relapsing/remitting) and it is “challenging,” to say the least, to manage both. … My husband’s confusion, anger, anxiety and paranoia feel unbearably suffocating at times – I lash out, as if fighting for oxygen, and of course this only excalates the situation. His sleep disorders – rapid eye movement (REM) sleep behavior disorder, where he physically acts out [ more like lashes out, kicking, punching, screaming blood-curdling screams] his dreams while asleep – are heartbreaking and terrifying. So far, medications have been only slightly helpful. It’s been terribly difficult for us to find any competent, empathic neurologist to properly diagnose, track and treat his illness, and help me learn how to manage this. So, I totally empathize with what you write, and so appreciate this forum for discussion. It is awful to feel alone with this stuff – all the conflicting emotions it brings up, the dearth of supportive medical information and care, and the lack of adequate guidance from neurologists for families of people with dementia.

                • Eileen

                  I looked after my husband for 8 years before I had to give up as he had Frontal Temporal Dementia and became aggressive and violent towards me. It was heartbreaking at the time, but now I’m his wife again not his carer other people care for him. I am very lonely as I live on my own now, but I’m starting to go out and enjoy life again. I’m still only 67 and hope to meet someone special and carry on my life. This may shock some people, but my husband has gone, there’s just this man that looks like, I visit regularly and love him, but he doesn’t know me, or the children anymore.

                • Jan

                  I know exactly how you feel. I don’t feel much love for my husband because this disease has taken the man I used to know away. We are both the same age.63. And I have been caring for him since his diagnosis in 2016. It has been the hardest thing I’ve ever had to do. It’s lonely and frustrating. Each month there is something else that I have to deal with. He is oblivious of his condition. My heart goes out to all carers. Be good to yourself too. Xx

                • Lori

                  My husband has early onset dementia as well, and I have fallen out of love – don’t want to even hug him or kiss him anymore, although he wants it all the time, as well as more, if you know what I mean. Diagnosed in 2015 but showing signs since 2009 and it’s been difficult to say the least. Delusions, paranoia, hallucinations are rampant, but at least he doesn’t wander out of the house. He’s 63 now and I’m only 53. I feel like I can’t live because of him, caretaker burnout, lost too much weight, have stomach issues and if it continues I may die! This is not what my marriage vows were! Researching facilities now and figuring out how to get him in before I really lose it. I empathize and bless you all on your paths of life.

                  • Helen

                    I have a similar situation, diagnosed in 2015, but looking back, there have been signs since 2009 at least, though we are now 66 and 76. I moved my husband to memory care a year ago, in 2017; getting him up in the mornings and to bed in the evenings with the incontinence, explosive anger, etc., was too much. You are doing the right thing by looking for a facility. My thinking is that it’s bad enough that one life is snuffed out by Alzheimers, no sense in giving up your own as well. Memory care is really beneficial, as it provides activities, company and daily care, which gets increasingly difficult. My husband can’t walk any more and it takes two people to help him stand up. So sad. Once he is in a memory care facility, your interactions will be more positive and relaxed.

                    As someone above said, it’s difficult to see other couples doing simple things together and it’s normal to feel a little jealous, deprived, to feel sorry for yourself. But we need to practice bouncing out of that. We need to build our lives around things we love, work on getting stronger, and try to enjoy every single day.

                  • Chez

                    Hi, I’m in a similar situation and I hate it… how are things now for you???

                • Maude

                  My husband and I are both 68yrs, married for 47 yrs after loving each other since early teen,We were very close and excited when we both retired. Vascular dementia stepped in.
                  My husband is functional , we do everything as normal, but he doesn’t see me as his wife esp tp love and have sex with , he thinks he is cheating on his wife. That sweet love has gone.
                  He claimed that our house is his father bought it. He gets confused and. agited with me at time . Is afraid he takes his car or wonder at this timeI

                  I missed our closeness and love as he seems cold . He said that he did not married to me and I stole his surname

                • Bev

                  I am 53 my husband is 68. I have been caring for him for the past 8 years. I was close to divorcing him and then we got the Alzheimer’s diagnosis and I couldn’t bring myself to leave him at that point. Now 8 years later, I am caring for a man I am not in love with. I have pretty much supported us through out our marriage. I always thought that he was just lazy. I suspect he was already starting to have symptoms even then. I never had an affair during our marriage but believe me I have been very tempted!!!!

                • Mary

                  I am truely not alone!

                • Deborah Demeo

                  So my husband has early onset Alzheimer’s too..he was diagnosed in 2015..its been 3 years later and he’s declining fast..I do feel like I’m falling out of love with him..I feel sorry for him. But I’m not in love with him , I feel guilty..like the other posts..I’m unhappy and feel like I’m taking care of a child…no conversation, no one to lean on , etc.. lost 20 pounds. Now 116… Thought that was great but for what he hasent even noticed..I guess what I’m saying is that I am experiencing everything the previous posts are sayimg… I’m depressed, lonely, and lost…taking each day by day..dont know how much longer I can hang on :/

                  • Patty

                    Very similar situation. I feel lonely, like my life is on auto-pilot and I’m just bidding my time. No life at all, few friends but it’s not fair to them because he doesn’t communicate anymore. I feel sorry for him and I’m doing everything now. Yard, rentals, bills, all decisions are mine alone. He used to be mean to me and I think he was taking out on me his frustrations with himself. Boy life is never what you thought it was going to be. God bless everyone who has the disease and especially the caretaker. It’s a thankless job. All I can say is I guess God really loves him because he gave him to me to take care of. I pray my kids aren’t burdened with me someday.😳

                    • Lois

                      It appears that I am not alone in my feeling of not wanting intimacy and not really loving the person I married 52 years ago. He was diagnosed with CMI one month after moving to a new location in 2014. We had had a new home built and after a tramatic moving experience he just seemed to be unable to do the things he was able to do like putting up fixtures etc. In 2015 after two major operations (hernia and back) he was diagnosed with Alzheimers. I found a drug trial 3 hrs away and there he had the nuclear and glucose pet scans which showed Alzheimers for sure. Now in 2019 he has trouble speaking, problems with balance, incontinence, dressing etc. He is very like a 3-5 yr old. I have taken over all aspects of our life. I am only lucky that he is not combative and so far does not wander. I have given up most of my activities. You are alone yet you are responsible for another person who does not participate in your life. It is very lonely. The hard part is not knowing how long this will go on. It is now 24/7. At times I think it would be better if I died and he could just go to living facility where he would have social activity. It is very quiet when you have no one who talks to you. I was told I can keep the house and car and a certain amount of our money after we have spent all of our life earnings, then medicade will start helping. We had tried to get long term health insurance about 10 years ago and after testing they refused to accept us. I now know probably why. I guess I am a lucky caregiver in that he is not combative or abusive so far. I sure don’t feel lucky though just sad and depressed.

                • E

                  Hi, I don’t usually comment on things that I read but I really feel for you. My husband was diagnosed with Parkinson’s at 49 and Lewy Body Dementia at 51. He is now 58 and life is very tough. I keep him in a very strict routine but life is very “grounding dayish!” I know its not his fault that he is ill but at times I resent him. He always planned for the future from age 15 (we have been married for 40yrs) a very old head on young shoulders! I used to say “what about the now?” ,but he was so focused! Now I feel that I just been left but trapped by the fact that I’m still married. My sister died of Motor Neurone Disease,my youngest son suffers with Schizophrenia and Bipolar and has had treatment for cancer and my mum was in a dementia home for 4 years before she died last year. My husband made me promise i would always look after him but I’m sick of sickness! I feel so guilty because I don’t want to carry on looking after my husband anymore and just resent him😕

                  • Maggie

                    I really feel for you. My husband has Alzheimer’s, my daughter has severe bipolar and my Dad has recently died having been looked after by me for the last 25 years. It’s too much for one little old lady to cope with.
                    I can understand your situation and the amount of resentment you feel- me too!
                    All I can suggest is that if you can, you relax the strict routine and when he’s asleep make a space for yourself in the house where you can retreat and read, write, phone a friend or relative and get some of it off your chest or out of your head for a bit. I know it’s not a life as you’d want it to be but it might help.

                • Evey

                  My husband was diagnosed the day before my65th birthday and only because we went private. In the UK it takes many years to agree to prescribe medication. All of my friends and family ask me ???? How is Keith !!!! Not one person asks me how I am coping X he could have cancer so it is better prognosis really????? I have cried tonight for the 1st time reality hit me x

                • Cheryl

                  My husband has Lewy Body Dementia, with Parkinsonism. I moved him into a memory care facility in Nov. He took care of his deceased wife for 5 years, she had Alzheimer’s and spent the last 13 months on her life in a foster care home. My husband knew what he was facing, and he knew what I was facing. I resent my husband for not committing suicide when he had the mental ability to do so. I’ve talked with two friends who are caring for their husbands with dementia, and all three of us arrived at the same decision; if we are diagnosed with dementia, we will kill ourselves. We do not want to put anyone we love through this hell, nor do we want to have all our hard earned money spent to keep our bodies alive. I do not understand why people diagnosed with dementia want to continue living and condemn their loved ones to care for them, watch them deteriorate and face financial ruin. How can that be love? I still love my husband but I resent him for putting me through this. He’s 72 and I’m 68 and we’ve only been married 5 years.

                  • Sandy

                    I completely agree with you Cheryl…..there’s no way I want to have my family take care of me if Im diagnosed with dementia. My husband was diagnosed with vascular dementia about 6 months ago and it seems since his diagnosis he’s decided that he can’t do anything anymore. He’s always been a very lazy man so I don’t know if half the time it’s the dementia or him just being lazy for not doing anything. All he does each and everyday is sit in front of the tv not wanting to do anything else at all. I’ve gotten to the point that instead of arguing with him I just go about my life as much as I can, it’s just not worth fighting with him any more. I do resent having to take care of him when he doesn’t want to try to help himself and know that if the tables were turned and it was me that had dementia there’s no way he would care for me. My husband is also 72 and I’m 65 and I’m no way ready to throw in the towel and give up on life even though he has.

                    • Jinny

                      Hello Sandy.. my husband is lazy depressed or both. I periodically hate /really hate him him because he wony cook. Lazy yes, so forgetful but loves his little life- Indian take away, shops tv & reluctantly some housechores. Too much to tell. Macular degeneration central vision gone. I cry, shout and wish I were dead.

                • Helen

                  My husband has Lewy Body Dementia with Parkinsonism. His adult stepchildten were never around but now want him to divorce me so they can take over his life insurance policy he has for me. Can he actually get a divorce?

                • Dr. Snyder

                  My husband is 46, we are going to Mayo Clinic on January 28th for more testing. We fear he has early onset Alzheimers. He found this blog as he was trying to find honest information so he could find a way to help me deal with his memory problems. He was devastated and felt defeated after reading post after post describing the victims with the disease and those victims that care for their loved one and grow to despise them. I do not know what our future holds. But I would rather have a rare glimmer of the man I married then bury him because he took his own life to spare me from suffering. Your words make me more determined than ever to prepare for the worst. There is no amount of money or stuff that will replace in my heart the love I have for my husband. If I can diaper and clean and bathe a child for years as they grow, I can even more so care for my husband. I have seen mothers with special needs children who care for them year after year after year without complaint. These women and men are my heroes. I am not looking forward to the day my husband forgets who I am, but I will never forget who he is. May each of you find the strength that you need to sustain you.

                • Cindy

                  My husband suffered a stroke in March of 2018 and everything went downhill from there. He now has vascular dementia. He never returned home after the stroke – he went from the hospital to rehab to a nursing home and finally to another nursing home in a dementia unit because he was wandering.
                  Looking back, I can see that there was dementia already in place before the stroke. His personality had changed and he was unable to hold a decent conversation with me or our friends.
                  I was visiting daily at the nursing home, but have cut back to 3-4 times per week. He has no sense of time. He says he’s happy to see me since it’s been weeks, when in reality I was there the day before.
                  My husband is not the man I fell in love with almost 40 years ago. He is my husband in name only. I’m now left alone to make all the decisions – about his health care, about the home, about family issues, etc. I felt anger toward him for this; I still feel pity for him the way he is now, and sometimes I feel nothing at all. My husband is alive in the nursing home, but my husband is also dead for all practical and personal purposes. When I visit, I don’t see my husband anymore. He’s just a man that I visit out of a feeling of obligation and of course “what would the neighbors think?”. I believe that what we are feeling is grief and we are going though all the phases of grief as if our loved ones had in actuality died. I’ve decided to sell our home and downsize. I’m going to start a fresh new life for myself. Is that selfish? I don’t think so. There is nothing more I can do for him. I see to it that he has excellent care and I will continue to visit, but maybe not as often.
                  I wish you all peace in your lives and remember – you still have lives to live!

                • Linda Walthers

                  Reading your comments inspired me.
                  My 74 y o husband is in a specialty care dementia facility. He kept ‘taking off’. We had the Sherrif’s Dept. out looking for him 2-3 times a week; sometimes twice in one day! My situation has a little bit of all of you in it.
                  Things to ponder:
                  Most of us are 50 + ys. old. My father used to say ‘With all the things that can happen to us, it’s a wonder that anyone ever dies of old age’. Celebrate the fact that you made it this far. There must have been some good times in your past.
                  Let’s count our blessings and stop being victims. Find something to be thankful for every day. A blind man cannot experience a sunset. Some parents ‘lose’ their chidren from accident or illness.
                  Some folks are ‘single’ and must do ‘all those chores’ for and by themselves. I could go on and on….
                  Think of how ‘fit’ you are from running up and down stairs all day and never sitting down. You’ll sleep better from being exhausted!
                  Don’t depend on anyone to make you happy. Make yourself happy. Better yet, make someone else happy!
                  Go find the neighbor’s dog and let him lick your face. ( yeah, I know, ‘ick’, but funny and the dog will be soooo happy.
                  Contact your local Agency on Aging to get respite help. Call the Alzheimer 24/7 help line. Keep searching.
                  My heart aches for you. My heart aches for me…, but what hardship are we willing to trade with someone else?
                  God is always with you. Seek Him first in everything you think and do. Ask for His help. Together, you are stronger.
                  Know that the rest of us are on your team, since we share a common bond.
                  Hugs to you from me. ❤️

                  • Carly Babcock

                    Linda, your letter was very moving and very filled with good information and ideas. In one generation it seems like the whole world has changed. I’m trying to help my daughter who’s expecting her second baby and I’m taking care of my husband who doesn’t recognize who I am A lot of the time. My parents are 83 years old and I depend on them to drive me and my husband to doctors appointments. He has cancer and dementia. I am trying so hard. I have suffered with major depression for 25 years and then I was diagnosed with fibromyalgia 6 years ago. I live in constant pain. And there’s no one to help or even talk to because I love the Lord most of all. My family told me to put him in a home and look for someone new. For one thing, as soon as he leaves our house I will be homeless. But they never have an answer to that except I can’t live with them. I have changed diapers while crying because the pain in my body was so severe. And he has no idea. I was taught to treat another person as you would wish to be treated. When I was in the hospital for 5 days a couple years ago no one even came to see me. I feel like I’m walking a thin line of Sorrow and fear. I know God did not give us a spirit of fear. There’s no Joy here and because he doesn’t know me there’s no love and friendship. Thank you for listening. Please write me back if you have the time. With all my heart, Carly

                • Gary

                  Wow, all of these writings are so helpful in not feeling alone. My wife was diagnosed 6 years ago with Mile Cognitive Impairment and has just recently been diagnosed for Posterior Cortical Atrophy. Basically, it’s Alzheimer’s evil twin. During the pass year, there has been a noticeable decline. She now needs help getting dressed and showering. Ok, that’s not too bad but I know what’s coming. I’ve read enough on the progression. I know that 5 years from now, my life is going to be completely different. We’ve been married over 40 years and I still love my wife but I also see how she is changing in her personality. To be honest, I’m scared. This is not how our retirement was to be. We have lost friends and family who feel uncomfortable spending time with us or my wife. I need a break sometimes. Our girls help out as much as they can but I sometimes feel like a prisoner in my own home. I’m only 62 years old and should still be enjoying life but this is the promise I made in the presence of God (in sickness and health). Our girls tell me to find new friends. Not so easy when I can’t leave her alone. And if its another couple, also not so easy to find a couple who is understanding to my wife’s condition. Ok, enough for now. Felt good to just say how lonely and isolated it can be to be a caregiver.

                • Carol

                  I am so happy to find this page. I keep reading advice about dealing with your “loved one” and I wondered if I was the only monster who didn’t love the dementia patient at all. I had a miserable marriage that I stayed in for my children who loved their father. Now at 75, I care for a man, my husband of 55 years, in his nineties who I dislike. He is my constant shadow who complains and criticizes and never ever has a positive comment. At least I know I am not the only one.

                • Tracey

                  Reading your posts has made me feel I am not the only one!! My husband had a work accident almost 5 years ago and it has brought on dementia. He is almost 71 and I am 53 and we have been married 16 years. He is always telling me he loves me and wants a cuddle, but I am so exhausted from working 7 days a week to pay the bills and still having to look after our 11 year old daughter I am beyond exhausted!!! It has really affected my health and have lost my friends. I feel so alone.

                • June

                  It is a relief to find out that growing to “hate” your spouse is not some terrible stigma but actually a very common thing. I find that the person I spent the greater part of my living with has become someone I don’t want to be around. I know inside he is the same person, but the outward manifestation make it hard to “see ” that person anymore. The idea of thinking of the person as a dog or cat makes it easier to handle the day to day frustrations and expectations. They still need love and care even though they may not want or appreciate it.

                  • Deborah G Savage

                    I’ve refused to go to a support group. I imagine them talking about how much they love their spouses. I don’t feel the same. Although I was madly in love with him, I am no longer. I don’t hate him.
                    For no clear reason, I find that I’m angry (mad) alot. Well, maybe it’s the fact that I’m retired and spending my retirement confined to my home, most of the time.
                    He has no friends. Although there are people who I believe genuinely care about him, he doesn’t care much for them, so he says. He has four children, only one comes to visit.
                    He was psychologist, so he thinks he knows all the tricks of the trade and has refused to accept the diagnoses (I understand that). He has vascular dementia. He does not always remember how to get into and out of the car or how to fasten his seatbelt or he’ll try to get out of the car before I’ve stopped. I’ve hired home care aides. They come for 6 hours, 3 days a week to help him with bathing, washing his clothing and to do light chores, those things that he use to do, like take out the trash and clean his bathroom, change the sheets on his bed. They do things to keep him engaged. He remembers some things very well and other things are some made up version of memories and there are some things he doesn’t remember at all (He purchase $50,000 worth of gold from, then sold it for $6,000. He bought that gold using a credit card. He does not remember that or so he says). He thinks he is well, but he’s not. He doesn’t want to bathe, he eats all day, swallows food without chewing, and watches TV all day. I’m not sure why, but he looks under my bed and in my closet, often. He picks up the phone and listens in to my conversations. My biggest challenges are having a conversations with him and knowing his mental state, at the time. I’m never know if what I’m saying is what he’s hearing. We’ll be talking and he’ll get this look. I’ll ask, what did I said and he say something that is not at all what I’ve said. The other day, he talked about our baby. He was still born. He was not talking about our baby. We have no children, together.
                    The neurologist told me he would get stronger, but he would not get better. That he needs to be supervised 24 a day. At the time, I wasn’t sure what she meant. I am now. My job is to take care of him. I TRY TO KEEP HIM SAFE. I don’t always know what I have to do. I don’t always like him.
                    You know what? I think he’ll out live me.

                • TimV

                  I thought I knew everything.
                  I was a corpsman in the navy.
                  I was a nurse for 27 years.
                  Top of the pyramid for 8 years.
                  Sure is a fast ride to the base.
                  Caregiver of my wife 100%
                  for 12 years now. Her family is
                  22 minutes away so to far to
                  come visit. I’ve stopped being angry.

                  If your looking for understanding,
                  Try the wheel of emotions in
                  Elizabeth Kubler Ross
                  On death and dying.

                  This is a complete Ambiguous Loss.
                  I do the best I can , for me I find
                  comfort in my style of religion.

                  I am saddened her family will never
                  Have the peace I have.

                  Do your best ,smile and cry.
                  Very few people ever signed up for this trip ,- willingly.

                • Nadine

                  It really is a relief to hear your fellow caregivers expressing the same feelings I am having. We’ve been married nearly 60 years and he had been a wonderful husband, father, and best friend until about 5 years ago when his whole personality changed. He refused to allow testing and our Doctor then said that it was obviously Alzheimers w/Dementia but that was as close as we could come to an accurate diagnosis. Some days are still good but most are a constant tug-of-war. Last Christmas he threw our electric knife at me – because he couldn’t get it back into the box we keep it in. Most of the time he isn’t like that, And when he gets mad, if you just wait a little while he forgets he’s mad at all. I feel as tho I am just hanging on and oh how I wish I had him back like he used to be. God Bless all you care givers. Please pray for God to give me the courage to carry this through to the end, and I’ll do the same for you.

                • Kathy Miller

                  I was a caregiver for 35 years for Alzheimer’s and dementia. Then my husband was told he has C.O.P.D. and dementia. I had to stop my job and stay home with him. I have not a lot of problems taking care of him with all my skills, but am very lonely. He’s always been my best friend and lover.Now I have neither. I can’t get out much.The one thing you should remember even he doesn’t know you he feels comfortable when your around that something know one can give him but you. Hang in there as long as you can ,but some times you have to let go.

                • Louise

                  I’m 57, my husband is 66 and we’ve been married six years. I waited a lifetime for someone who understood me, “saw” me, and supported me in my life goals and purpose. We adored one another. About 4 years ago, I started to see changes and first called the doctor, but he was still working so nothing happened.
                  We just had our sixth anniversary this weekend and all of a sudden I realized that he had almost all 1o signs. I’ve taken care of both my parents and my grandparents to their deaths, and both my parents had brain tumors. I’ve moved across the country several times to tend to my elders during their end stages, and I have no family of origin left. My son is on the autism spectrum and I have a major disability myself that’s genetic, progressive, and limits my activities and abilities already.
                  I MISS my husband, he’s already a shadow of his former personality. Everything has already fallen into my lap – financial planning, organizing our lives, making meals, and it just kind of happened.
                  My husband is currently sweet and loving and will do housework if I make it easier for him. He loves seeing me naked but he’s like a 14 year old boy in his approach nowadays, which makes sex with him weird. I’m not connecting with the person inside anymore, and he can’t see me. He also doesn’t understand why I’m sad about “losing him” when he’s right there in front of me.
                  Because of my own disability I know that I won’t be able to take care of him at home once that middle stage establishes itself. I guess it depends on whether he wanders or gets agitated, so time will tell. But his symptoms are progressing fast, every 3 months he becomes noticeably less capable than before.
                  Thank you all for your honesty. I feel more prepared for what I have to face and that my intuition (after all those years of caregiving for my elders) about what is going on with my husband is right on.
                  I’m so grateful for the few good years we did have and the ten before he finally convinced me to marry him (it took 3 tries as all my other marriages failed).
                  Realizing that my whole future will be different than I expected, that I won’t have a partner and am alone again is a huge grief. I love the man in the next room, this shadow of my dear heart, but he is not the man I married. I will care for him as best I can, as I would want him to care for me.
                  It seems 100% normal to fall out of love with someone who isn’t there anymore. Your brain is smelling your lover and telling you they are there, but repeated experiences of not being loved and cared for by your partner tells your brain not to respond with those feelings of love. I mean, that’s normal. It’d be pretty screwy to have a system where the default reinforced staying with people treating you badly. It’s normal and healthy to want intimacy – emotional, physical, and sexual. People do better when they have that in their lives. Life is complex. Living is hard. Be gentle and compassionate towards your selves, people. You are doing your best and that’s often enough.

                • Joyce

                  My husband has vascular dementia after having embolization for an AVM in 2008. I have NO husband, no sex, no touching, he’s very selfish, quick to yell at me. I can’t take it anymore & don’t know what to do. We will be married 50 years in September. I am so hungry for affection.
                  He was always quick to yell & get mad, but it’s magnified since his AVM. I don’t know who to see or talk to.
                  I want to get up & leave.

                • Susan clancy

                  I’m so glad to find it’s not just me. I married my husband only 9 years ago, after dating for 9 years. I remember being so happy that I found him, and now I’m alone with this stranger who knows me still, but just to do his bidding. I miss the man I married and I will have to keep going as long as I can.

                • Dan Bland

                  I know we all feel the pain. I have chosen to be my wife’s sweetheart and leave most of the caregiving to others. We are fortunate to have access to a good memory care facility and I can visit my wife daily I am still a good handholder and foot rub expert and can help with the other things when needed. I have my own health issues but she’s the top priority.We visit in different ways now,and she doesn’t always know who we are,but I do,and after 55 years there are too many wonderful memories to let me get overwhelmed.I cry all the time .I laugh too.

                • Rita

                  My husband was diagnosed 5 years ago at the Mayo Clinic with Posterior Cortical Atrophy – a rare form of Alzheimers. He had symptom for at least 4 years prior to clinical diagnosis. Today he is 62 and I am 57. I am reaching the point where I am considering memory care and day to day life is becoming too difficult and so very stressful. With the help of my husbands sister we are going to start the conversation about the future and what that might look like. I love my husband but am no longer in love with him. Its so hard to be care giver and lover. Impossible really. Makes me feel better I am not alone. My faith, support from family an friends has kept me going. I want to start the transitioning to memory care hoping we can start with certain days and then move him when the time is right. Its all so hard. So much guilt for me. I have tried to be the best wife. This is horrible disease for everyone involved.

                  Any tips on how to have an effective conversation? Am so worried that he will just want to kill himself.

                • Stephanie Jenkins

                  My good husband died June 14, 2018, Alzheimer’s and vascular dementia. He suffered a lot from a stroke on January 1st until he died June 14. We had an epic love story. I wanted to take care of him until the day he died. Stroke caused him to be difficult and he didn’t sleep. He moved counterclockwise on some tumbling mats because of agitation and restlessness. for several weeks. Very difficult to watch.

                  • ruthlockley

                    Ruth Lockley
                    My husband is 86 and has Alzheimers which began in 2013 or even before.
                    It has developed very gradually but has accelerated since being in care in
                    2018. I can relate to so much of the experiences mentioned by others but I
                    am fortunate as he has retained his sweet nature even though he is much
                    more withdrawn and quiet with minimal ability to converse now. He just
                    “lights up” when I appear. A very contented man all our married life and
                    has always been a lovely, happy and very open and outgoing person.

                    With all of the difficulties I am just grateful that now is the
                    time to cherish him and remember how wonderful it all was. It can be
                    wonderful now too in a different way as my days are focused and giving
                    him some joy and pleasure in any way I can. i.e. little outings, a movie
                    date in his facility room. Sitting with him while he sleeps. Holding his
                    hand and particularly sharing photos of our life together. We still love
                    going to church together which has been an integral part of our marriage.

                    Yes, it is hard but it is also a very beautiful time. “To love and to cherish”.

                • Paul

                  My wife is 56, and diagnosed with MS 6 years ago, with an early onset Alzheimer’s diagnosis 3 years ago. She was the best part of my life, and I thanked God every day for her.
                  The other day a song came on the radio that we danced to at our wedding 33 years ago. It meant nothing to her. I’ve given up thinking she remembers anything of our life. I feel like I’m dragging around my wife’s corpse. I find joy an impossible emotion now. My favorite part of the year is winter and favorite part of the day is night. Lifelong friends have abandoned her, but I understand. Who wants to spend time with a breathing corpse. If loneliness kills, I suppose I’m not going to have to deal with this much longer. It helped to read that my feelings aren’t unique, or unexpected.

                  • Kadi

                    Your story breaks my heart. I too, am beginning to experience this un-discussed situation of losing your beloved spouse while they’re still living and breathing.
                    Not sure of what I’m going to do, as I see that all of us in this situation are in the same boat now.
                    I appreciate the honesty of the contributors to this site, had a feeling that I was alone in this journey. I really miss the man I expected to live with forever… nothing prepares you for this loss.

                • Karen

                  I can relate to so many of your stories. My husband and I have been together for 20 years. We had both been through divorces and our children from other marraiges were all grown when we met. Our grown kids always got along, not only with their step simblings, but also with both of us. He was very sweet and attentive, and I thought I’d finally found the love of my life. There were things about him that I didn’t really like, but like everyone who falls in love, I chose not to pay much attention to those things, as his good points far outweighed his bad points. Eleven years ago, in 2008 when everything fell apart, he lost his job. He was a few months from retirement age, so he just retired. He ended up in the hospital with very high sugar levels shortly after loosing his job and found out he was a type 2 diabetic. Through medication and diet, it was controlled perfectly for years. However, he seemed to feel his health was now my responsibility. This was something we started arguing about frequently. A year later he had a mild heart attack and had 2 stents put in. He was given a clean bill of health and told to go live his life, to do all the things he’d done before the heart attack. But he just never did. He started living like he was a porcelain doll and unable to do anything. As he did less and less, I had to take on more and more. I was working full time and starting to feel a lot of resentment for this man who did nothing while I felt overworked on a daily basis. My parents both had dementia and it was a heartbreaking time watching what the disease did to their lives. On top of having to take care of pretty much everything having to do with our lives, I was still working full time (much of it to pay off his hospital/doctor bills) and spending as much time as possible with my parents, who lived 4 hours away from me. I did not think life could possibly be more stressful. My parents died 10 days apart from one another which was more heartbreaking that I could ever have imagined. My husband, who at this point, did very little to help keep our household and life running, suddenly stopped doing anything at all. It felt like he decided I no longer had to care for my parents, so I could devote all my attention on him. It’s like I never got to grieve my parents before I suddenly had this entitled toddler man expecting me to take are of his every need. He even started walking like a toddler, taking these itty bitty steps while holding his hands out to the side, and moving as slow as possible. The last 3 years have been hell, and I do not feel love for this man anymore. I feel resentment and anger towards him. I finally had to quit my job, that I loved, because I simply could not handle it all anymore. Now I’m stuck in a home with a man 24/7 who doesn’t want to help with anything. Last January he ended up in the hospital again, this time with keto acidosis, brought on by his refusal to take his medications or eat the right foods. I was sorting his medication into those 7 day medication containers, would ask if he took it, he would lie and say yes, and eventually I’d find his box and realize he wasn’t taking his medication at all. It’s like he wants to be ill so I’m forced to take care of him. While hospitialized, he was diagnosed with beginning dementia. I was told that the old saying, if you don’t use it, you’ll loose it seems to be what has happened here. He’s just refused to use his body of his mind for years, has not participated in life, and now, he’s just loosing the ability to do so. He used to be a very sweet natured man, but is now very ornery, nasty and manipulative. He has never taken care of me when I was sick, etc., but rather, would always become much sicker than me, forcing me to take care of him. A few weeks ago, I ended up with a blood clot in my leg and 2 in my lungs. I was in the hopital for 4 days, then sent home and told to stay off my leg. Since being home, he has done nothing for me. He is actually making recovery much, much harder. All this after I’ve had to nurse this man back to health more times than I can count. I’m now facing some other major health issues, but know I need to put off medical treatment until I can get this situation under control. I will be looking into a nursing home as soon as I’m able to get up and about. He went through physical therapy after his hospital stay and was told there is no physical reason for him taking these toddler steps, that he needs to make himself walk normally, and told with exercise and proper diet, he can regain his strength. But he will not push himself, he will not do anything for himself, he won’t even take his insulin shots. When I was in the hospital, he brought his insulin up there for me to give it to him. The man simply has no interest in doing a thing for himself. All I can look forward to at this moment is the hope that I can get him into a nursing home and start living my life again. All those bad points I chose to ignore about my husband 20 years ago have now become his prominent personality traits, and all the things I loved about him are completely gone. It’s like living with a stranger I would never have chosen as a partner in my life. I know I’ve written a very long comment and no one is probably going to read the whole thing. But I feel better getting this off my chest, and I realize now I’m not alone in the feelings I have towards this man. I hope you all find solutions before this completely does you in! As one of the posters said, the dementia already took someones life/personality, we shouldn’t let it take our lives, too… I just cannot fathom living the rest of my life like this. I’ve just never been a person who accepted the worse about life as my fate, I’ve always worked to make things better. For years and years I tried to find “solutions” for him, find things to make him feel better, tried to motivate him, tried and tried and tried. As the decade of him not doing anything approached, it suddenly hit me. HE does not want to be better. I cannot make him want to be better. I have given up on him. I just want to feel like life is worth living again.

                  • Suzan Teeters

                    Oh Karen, I can so identify with you, living with a very lazy husband who does not try one bit to get better and stronger. My husband and I have been married 8 1/2 years. I’m blessed that for the past 17 months, he’s lived 75 minutes away in a Veterans’ Nursing Home. Because he was too lazy to meet his own medical needs, his 4 adult children put him there while I was recuperating from a shattered shoulder from a fall while outside winterizing our home. On our wedding night I found out he could not have intercourse, so we’ve had a totally sexless marriage. His PTSD pushed him away from even emotional intimacy. Over the first three years of our marriage, while he watched TV and slept all day, with me taking care of everything inside and outside, continually being rejected and put down by him, all my love turned to anger and resentment. Even when I broke my knee and hobbled around for two years because I could not afford surgery, he never offered to help. When I had a heart attack, the same thing as with the knee. I’ve done everything for him. He would not do anything for me. Now that he’s an invalid in a Home, at least I can live my life and somewhat catch my breath. He has a village caring for him daily. I used to visit him 3 times a week, but now it’s around 2 times. I am repulsed when he asks for a kiss, and think I’ll just begin blowing him a kiss instead to prevent me vomiting. He thinks our marriage is good, only because he lives in his own fantasy world. What I now deal with is deep anger, resentment, and lonliness, not being lonely for him but lonely for what never was….. part of the anger is towards myself for falling for this guy who came on so charming while we dated, then deastically changing once he said “I do”. (He shows narcissistic tendencies). I may need to seek counseling to rise above all my negative feelings, but I am so very thankful I don’t have to change his diapers, shower and dress him, do up to 5 loads of laundry each day as he urinates over his chair, the rug, his bedding, sort and administer his daily 24 pills and 4 insulin shots, do the cleaning, shopping, cooking,
                    yard work, maintenance repairs, pay all bills, do all driving as he got too lazy to do that, take him to his numerous doctor appointments, some hours from home, lift him out of bed, into bed, in and out of his wheelchair while he sits on his fat bum (he’s 315 lbs) watching TV or sleeping up to 19 hours a day!!! I’m through with being his caregiver!!! I can finally breathe.

                • S. Nicholson

                  I am also a spousal caregiver, I still love my husband. My husband is not the man that I married, but I made a promise thru sickness and health. I will care for him as long as I can. We do have great support, church, family, and friends. It’s just not in me to give up on a man who love me so much and would do anything for me.

                • J Baker

                  My husband has not been diagnosed yet. All the signs are there. At this point, he will not see a doctor. For the last several years he has turned into a non social, stay at home, tv watching husband. He is now showing forgetfulness, short term memory loss. I feel so alone and depressed. I too, have fallen out of love with my husband. He is not the man I fell in love with. I want to pack my bags and leave! When I think these thoughts, I feel so guilty. I do not have any support from anyone.

                  • Mary

                    I feel the same. My husband refuses to get any help. I have taken him to get tested and he was diagnosed with mild dementia. He is 26 years older than me. I am very active, hold a full time nursing job in a large pediatric urban hospital’s emergency room. He is retired and he claims he earned not doing anything because he was working long before I was born. I make doctors appointments for him do all the cooking cleaning grocery shopping laundry.the kids are grown. He forgets things, lives in the past but still high functioning which makes me even more angry. He says everything is my fault.
                    He did a lot of horrible things that were thoughtless throughout our marriage so the thought of taking care of him makes me sick to my stomach

                • kate

                  I just want to caution the lady who says her husband still functions highly and manage his finances that one day that will change and you may have no idea what happens to all the money. My husband lost her entire life savings with his craziness in this disease. And that was before we actually knew he was ill. We had clues but an incompetent doctor told us that he was experiencing normal aging forgetfulness went all the time he was suffering the effects of the silent stroke evidenced by an MRI at the same doctor had in his possession. I actually left my husband before I knew he was ill So when it came to the time when he could no longer live alone, I brought him to Mexico and put him in Assisted living care which has now become nursing care. His health is failing but his family has lived with this disease, as he has, for nearly 10 years now. Just visiting him upsets me for days. If I lived with him and tried to care for him, I would not have survived this long. An Alzheimer’s support group was very helpful to me when it was available. No one who has not lived dealing with a dementia patient can truly understand what her frustration it is. Find people who have been there to talk to

                • Drew

                  I’ve been with my wife for 16 years this year. We’re both in our mid-30s. She has a cognitive dysfunction that closely mimics dementia which onset 9years ago. At any time, any decision, she can forget what was agreed and do what she actually wanted to begin with. I live in constant fear of another wrench being thrown into my already crumbling machine of a life. I was madly, deeply in love with the woman she was, the woman that I get glimpses of regularly. Glimpses that fade, and so goes my hope.

                  I feel as if the problems, the pain, that I experience is not real to her. Even before the dysfunction, she struggled with abstract thinking. Now, because she loves me so much she feels she would never do the things that cause me such an issue. The bewilderment on her face destroys me every time. I feel as if she believes I’m either going crazy or becoming abusive when she invalidates what I undergo.

                  I feel like a failure, a complete POS that I am at the point where leaving is the only solution I feel I have left. The worst part is the anger, as her malady is the result of her abusing pain pills–she has Lupus–and having had a series of seizures that damaged her brain. Sure, she was over medicated by doctors, initially. But, where does the blame for the doctors stop and the addict’s responsibility begin?

                  I don’t know if I can do this anymore. I’m such a mess that this took me 30mins to write through the tears. I just see more pain in my future.

                • Nancy J

                  My husband is going to be 82 in November. He started losing some cognitive abilities after losing his oldest son in 2005. Started Aricept in 2013, but officially diagnosed with imaging in 2014 with Alzheimer’s. He is now at end stage 6 and entering stage 7. Surprisingly, he is able to walk and not get lost, shave, shower, and feed himself, and help me mow 6 rural acres of grass. Any other house maintenance is undone. He can’t fix cars or anything else. He’s so obsessed with the change in satellite channels and nightly this is his sundowners fit. I am having health issues now. I have a rare disease where my stomach bleeds and causes anemia and I have the beginnings of liver cirrhosis. My nerves are shot. I have no help and we live in a very small town 60 miles from any resources. I wanted to seek guardianship and paid for the paperwork only to discover I needed to drop it because he has an estranged daughter who would have to be notified. She would love nothing more than to make my life a living hell and try to gain access to her dad’s assets. Thank God I’m his primary POA and the attorney is his backup. She cannot try to change that as he has been determined incompetent by his neurologist and legal matters set in place beforehand cannot be altered. I love him dearly, but it’s a different love. I don’t feel intimacy anymore. I try, but like y’all, it does change. I felt guilty, but now I realize it’s a normal response to the stress.

                • Denny Rose

                  Sadly if you are only I your 30’s you should think about what you need from life! I have taken care of my husband since my 40’s because he has Parkinson’s disease and Dementia. About 10 months ago he had to move to a nursing home because Social Services said his mobility was too poor for me to look after at home. We were very upset as a family when this happened but it’s been a huge relief for me. I have been a good wife for 41 years ( married at 17). I go to see him twice a day for at least 2/3 hours and feed him. It breaks my heart and I feel like he has lost the life he had planned. He was a very jealous husband and although I tried to understand him and adjusted who I was to make our marriage work for the sake of our 4 children and my Catholic faith. My problem now is that I have met someone who is fond of me and it’s very overwhelming because I am so tempted to take things further, this person completely understands and knows my situation even though I still continue to put my husband first! What do I do??? You are so young, please take care of your life, you can still care for your wife along side. We are able to love more than one person because the person you married isn’t a spouse in the true sense of the word anymore:( x

                  • Eliza

                    Denny, my situation is similar and very different at the same time. I am 41. My husband 61. We’ve been together for 9 years, have a 5 year old son! He has not been diagnosed yet, however, we know we are dealing with some type of dementia. Alzheimer’s or Front Temporal Dementia. He already has changed so much, he no longer is the person that he was. He could sit and watch tv all day, barely talks to me or my son. No hugs, no kisses, no more. That is all gone, and I’ve been feeling so alone for a while now. It isn’t fair for me, of course for him either! He doesn’t deserve this!
                    Recently I met someone, actually looking for some stuff to help with my sadness, and to manage my stress levels. This person has become a very good friend and I actually know he’s falling in love with me. I am all over the place with my thoughts! I feel the worst wife, I feel guilt, but at the same time, it really helps to spend time with this guy. He knows my situations and says he wants to be there for me. I think he is honest, but still not sure what I should do….
                    I’m lost

                • Moira

                  Thanks everyone. I no longer feel like the only person suffering in this way.

                  Husband was diagnosed last year with Alzheimer’s and frontal lobe dementia.

                  It took about three years to get the diagnosis although the signs have been there for five years.

                  He’s not the man I married and I miss that man so much.

                  Three weeks ago, after three years of constant arguments he said he wanted us to seperate. I left our home the following morning with just a suitcase of clothes.

                  He’s not been in touch to find out if I am dead or alive. When I left I was very ill with an infection and was also being investigated for something else which could have been cancer but turned out to be nothing.

                  Fortunately, our adult daughter is currently at home but she is due to go back to university soon.

                  I have rented a property in another town but feel so rejected and alone.

                  I have no idea what the future will hold. I am 62 years old and need to work less because of my health, instead I am having to work harder than ever before.

                  I still worry about him and feel so guilty for leaving but it’s what he wanted. My life feels empty.

                  He’s not con

                  • Lucy G

                    When my husband and I married we would have never believed that he, a then very healthy,
                    intelligent man would ever develop vascular dementia at the age of 55. We have been told
                    that it most likely is the result of cobalt treatments he received for leukemia when he was 26.
                    We were married 2 years at that time and our eldest son was born just 6 weeks prior to that
                    diagnosis. As of this year we have been married 40 years. I can say with all honesty, that
                    the diagnosis of dementia has been harder than the cancer. Like all of you, because of his
                    limitations, I love him but am not in love with him. He is a shell of a man I married. Every
                    day is a re-run of yesterday, with repetition and an exercise in patience. He has trouble
                    answering the phone, using the TV remote. I have to do everything for him including putting
                    on his shoes and he is now at the point where he can easily lose control of his bodily functions.
                    He relies so much on me that when recently I had to be away for 2 hours getting the car maintained,
                    rather than alerting LifeLine to get emergency help when he dropped to the floor, he called me instead.
                    I have instructed him that I can’t help him anyway because I have arthritis in my back so even if I had
                    been home I wouldn’t have been able to help. I know about loneliness, I live it every day because
                    he sleeps an average of 15 to 17 hours per day. I frequently have to stop myself from crying jags
                    because if I don’t I’ll just keep crying. I am starting a six week stress course next week.
                    I also attend a caregiver support group once a month. I strongly recommend everyone do this to
                    help take care of themselves. This is a club no one wants to join but sadly more and more people
                    will be in our same boat. Tired, sad and risking our own health but for me divorce, separation is not
                    an option.

                • Lucy

                  When my husband married we would have never believed that he, a then very healthy, intelligent man would ever develop vascular dementia at the age of 55. We have been told that it most likely is the result of cobalt treatments he received for leukemia when he was 26. We were married 2 years at that time and our eldest son was born just 6 weeks prior to that diagnosis. As of August 2019 we have been married 40 years. I can say with all honesty that the diagnosis of dementia has been harder than the cancer. Like all of you, because of his limitations, I love him but am not in love with him. He is a shell of a man I married. Every day is a re-run of yesterday, with repetition and an exercise in patience. He has trouble answering the phone, using the TV remote. I have to do everything for him including putting on his shoes and he is now at the point where he can easily lose control of his bodily functions. He relies so much on me that when recently I had to be away for 2 hours getting the car maintained, rather than alerting LifeLine to get emergency help when he dropped to the floor, he called me instead. I have instructed him that I can’t help him anyway because I have arthritis in my back so even if I had been home I wouldn’t have been able to help. I know about loneliness, I live it every day because he sleeps an average of 15 to 17 hours per day. I frequently have to stop myself from crying jags because if I don’t I’ll just keep crying. I am starting a six week stress course next week. I also attend a caregiver support group once a month. I strongly recommend everyone do this to help take care of themselves. This is a club no one wants to join but sadly more and more people will be in our same boat. Tired, sad and risking our own health but for me divorce, separation is not an option.

                • Catherine

                  Reading these comments has helped so much! I truly thought I was the only one who felt this way, and all I hear from other is that I just shouldn’t feel anything but compassion and love. My husband has always been abusive and cruel, and sadly I was foolish enough to stay for reasons that no longer matter. Now life is a living hell, caring for someone who never once treated me with any love or compassion. He has middle stage lewy body, and like others he can still do a few things for himself, but doesn’t want to. Why should he when he can make me do everything. I had a bad fall 5 months ago and am currently in a wheelchair, and he can actually get around better than I do. But I do everything. I have a number of serious health issues, and this is going to take my life. I’m so angry all the time – I just hate that I’m going to die this angry, knowing that he won’t care.

                  • Lucy

                    I hear you Catherine. A lot of your story resonates (except he was never mean to me). I once ask what would happen if I got really sick, he responded ‘Oh well’. As caregivers we can really lose ourselves in the process.

                • Denny Rose

                  Catherine, you need to get out of this situation if you can!? If provision is available/possbible then you can move on. My husband suffers with Lewy Body Dementia and Parkinson’s. He is the only man I have ever known ( courting since 15,married at 17) He was a very controlling and jealous husband but also an intelligent , hardworking and compassionate person( where others were concerned) that I tried to understand. I loved him with a passion and never gave him reason to be so jealous and controlling. When I look back I feel that , perhaps, he was a little bit on the autistic spectrum, as 3 of our 4 children are. I go to his nursing home twice a day, I always will. Please Catherine, make yourself happy/happier, it’s up to you because it’s your life. I have met someone who really cares about me and understands my commitment to my husband so I feel lucky. I will always live my husband but I can love someone else alongside because they love me in return, which is so wonderful. Catherine, don’t kill yourself with guilt because it’s just life and life is short xx

                  • Kathy

                    I have been reading everyone’s comments with such sadness and empathy. I have been married to my husband for 4 yrs. he has just been diagnosed with early dimentia. I was in my first marriage for 37 yrs… 3 children and 8 grandkids . It was a horrible marriage!! Then I married a wonderful man , whom I had known thru business for over 40 yrs. Life was wonderful , but now this horrible disease has appeared. Selfishly , I feel as if I have been robbed twice of a happy marriage. I love my husband ….but it is different now…like a mother and a son! I am 70 and not in the greatest of health and am hopeful I can be his caregiver til the end. Reading other people’s stories has been incredibly helpful….it has been hard for me to deal with my anger issues….I am ashamed at my anger and realize now it’s normal I am seeing a therapist and it is helping. I want to thank all of you for sharing your stories and helping me to see there are ways to deal with this so life can be a little easier and fulfilling!

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