The shock of seeing your handsome, fit 53 year old husband in diapers can not be put into words. I think the words I have already written are enough.

The sadness of leaving him content and happy in a strange place, so different from our home is immeasurable.

The relief of not having to worry about him twenty four hours a day, seven days a week is filled with guilt and liberation.

Our lives are easier, yet harder all at the same time. There is no going back. There are no more snuggles on our couch. No more working in the backyard together. No more birthday dinners or shopping for Christmas or playing catch. There are so many moments we didn’t have yet and even though Jim is still alive, those moments are lost forever. Yet, I cannot take the weeks or months I need to grieve. I grieve daily, but while carrying on and while overseeing his care and the kids and work and the house and the dog and life itself just keeps moving on even while I will it to stop, even for just a few moments. I never have enough time anymore.

Yes, life and the world around us will not stop for our pain, our sadness, our exhaustion. We must keep putting one foot in front of the other and keep forging ahead, even if we don’t feel like it.

I need time but I cannot have it yet. Maybe one day. One day I will get my house cleaned the way I envision. One day I can sit with Jim and just be still and appreciate the moment. One day I can take a nap without guilt or shame. One day I can be happy again. One day….

We all know the mess that we are in. We all search in vain and struggle to find solutions. Yet we all find ourselves with the same heartache and secret relief when it is all over.

What is the solution? A cure. Only a cure. I don’t know what else could ease the burdens caregivers carry with them for years and years. Only a cure.

For now, I will just keep myself as capable as possible. I certainly am not the person I was six months ago, a year ago or 5 years ago. Now it is up to me to make sure we are all ok. But are we? Will we ever be? Can we be? I don’t know the answer, but I will certainly keep trying until I can’t anymore. I owe this to Jim. I can’t help in many ways, but I can make sure his children and myself are doing what he wanted: Living.

16 thoughts on “Living

  • Jan Jackson

    Every word, so apt. And I, too, grieve the lost dreams and affection and companionship of which you speak. We are older. Richard’s decline has been slower than your husband’s will be (age), but….I do feel your pain. I am perpetually exhausted, depressed, gloomy and lonely. Yet I have my iPad. Therein lies my connection to the outside world. Texting, emailing, and sometimes, phone calls. I know you hear this as do I, but do what you can to preserve your health and sanity. All things….change. Grieving, though drawn out and awful, will one day be more healed. Hang in, but take care!

  • Marilyn- the caregiver.

    As a caregiver myself who work in an Alzheimer facility and often witness sadness, grief, and silent, and sometimes just stare with tears always break my heart with compassion and understanding how hard it is to be on that situation….and all i can do is to provide comfort and genuine love and care to the one i am taking care of and give much support to the family by making sure that their loved ones are being taken care of and in a safe environment.

  • Deane Johnson

    I lost Joe January 31, 2015 and I am as lost today, if not more so, than the day he left this world. I don’t want to remember Joe with Alzheimer’s and that haunting look out of his eyes but for some reason I am stuck. What I do remember are our most intimate times. I remember the look on his face, his tender loving manner and the wow. I ask a widowed friend if she remembered those special times and she said those memories were vivid. Isn’t it interesting what I remember at age 85?
    Karen all those memories are stored in your memory bank. Blessing on this cloudy rough j

  • bonniepatrie

    My Dad had Alzheimers and we visited him often in the Nursing Home where he lived the last 4 years of his life.
    His smiles and remarks he made when we would tell him something are the memories I have and visiting him with Mom was great as we went for ourselves and felt good when we left because we knew he was in a good place. We would reminisce with him about his car and garden etc ….We were close to him even though he did not live in his house with my Mom.
    I was lucky to work in my Dads nursing home and was happy to know the staff enjoyed my Dad.

  • cristie

    I watched my 6’3 240lb. Logger dad literally waste away..he would have been mortified knowing this was how his life ended. Every day we thought it could not get worse….but it did!!! It has been four years….and our family is finally starting to recover.This is a cruel, cruel disease…a cure has to be found!!!

  • Joyce Kirkland

    Dear Sweet Lady, wife of Jim:

    Your letter touches my heart so. Losing 79 yo brother (tho he has lived full life) and lost 84 yo mom to this horrid disease. Her mom as well succumbed to this disease.

    My others who read give you consolation. May God continually make you stronger and may you project all your care you can upon your wonderful children and demonstrate strength. You love is so evident in couple pic of you and family pic. That will never change. We all pray for cure.
    Take care of yourself as you HAVE TO in order to care for all the others. God Bless.

  • allene

    Oh my goodness! I so understand your pain. It will end one day, I promise. Sometimes looking at it from a different perspective helps. I know it’s hard, but if you can begin to find humor in it, it helps.

    I just lost my husband 2 months ago, 5 University degrees and a fitness buff. We used to say, before there was Google, there was Michael…he knew something about every subject or if he didn’t he would find it.

    We don’t know why this happens to our loved ones and in your case he is so young. Take care of yourself, I know, easier said than done. God Bless you!

  • Lisa Reilly

    I love reading your letters. I was just diagnosed with Alzheimer’s at 53 years old. I lost my grandmother to this horrible disease and watched my mother suffer through as her caregiver. I can not get over the guilt of the pain I will cause my husband and children. I feel each day I’m losing my self and becoming angry. I will pray for you and your family.

  • Janet Robichaux

    I understand your pain fully. Since my husband’s death in March from early on-site Alzheimer’s, my goal on life now is to advocate for a cure!! A cure NOW! I don’t want my children to ever have to worry about having alzheimers! !

  • Barry

    I am a hospice nurse and this past Sunday I was caring for a family that lost their dad to Alzheimer’s. I’m actually sitting here with the wife as I was reading your story. She and I was just having the conversation about how hard it is to watch someone go from a hardworking independent engineer, to a hospital bed with diapers. Thank you so much for sharing your story it is an inspiration and very helpful.

  • Anita Latulippe

    My husband and me were together for 52 years. I feel so BLESSED to have him in my life although,the last 10 years were stolen from us because of this horrible disease…I felt cheated of our time together. My greatest honor was to care for him until he passed 7 years ago…yes, it was very difficult to watch him slip away, my ” can do anything, intelligent, caring,loving husband”, but I would do it again if I could have him back. Only now can we laugh at some of the “crazy” things that went on in our home….hang in there and May God give you strength, courage,& wisdom

  • sylvie

    like you I will probably have the same future, my husband (50 yrs old) was diagnosed with fronto temporal demencia 3 yrs ago, similar to alzheimer, it’s hard very hard, hope you have a lot of support, family, friends it’s the only thing that help take care xx

  • Carol Munro

    We are now heading into our tenth year of Lewy Body Dementia and each day it becomes more difficult to care for my husband of 57 years. It is so painful to watch him moving further and further away. We are currently on a list to recieve a call for resident. Is it wrong to wish this could happen soon? Do any other caregivers have advice about how best to handle this when the time comes. So very sad.

  • Kathy

    My heart goes out to all the families that care for their loved ones. I’ve been a caregiver/Activity Program Director for almost 30 years, and now an Executive Director for a non-profit Senior Adult Day Program. Day programs can be a blessing for some families. Day programs offer much needed respite, provide meaningful life enrichment activites. Most non-profit offer scholarships. It can also help keep loved ones home longer. Look for a day program in your area.

  • Cgberan7@aol.com

    53 is much too young but unfortunately it does happen. The progress is a very rapid decline in the younger person. It is very tough for the spouse and family.

  • Cherie

    My ex-husband was diagnosed with Lewy Body with Alzheimer’s. I unfortunately am the only one to help him and take care of his affairs. He lives half a block from me so I am in contact daily. He is failing fast all of a sudden and I am just beginning to feel the pressure on finding him a place to go! I have been to,d to not bring him home due to the type of Alz it can be very aggressive and also he will become aggressive. He has become very close to my sister whom they both hated each other for the 31 yrs we were together!

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