I recently had lunch with a dear friend. Sometimes there are blessings bestowed upon us through the most unimaginable of times. She is one of them to me. Jim and I met her and her wonderful husband while advocating in Washington D.C. We immediately hit it off and have been confidants and friends ever since. We get where the other is. When I found out Jim was “actively dying,” I called her and she was in his room when I arrived. We have a bond and connection that defies words, simply because without having to say anything we understand minus judgment how the other is feeling, what they are thinking and unfortunately the worry, guilt and stress that comes along with our journeys.
During our most recent conversation, my amazing friend confided that she sometimes wished her husbands’ fight was over. She immediately followed up her statement with, “I know I can say this to you and you will understand. There is no one else I could utter those words to.” And I got it. I understood and I felt her pain at releasing those thoughts out into the world to be heard aloud. To admit caregiving is taking a toll. To admit that watching her beloved husband of thirty years decline and become someone she doesn’t really know anymore is too painful. To wish for a world that didn’t actually include her best friend. She probably regretted her words immediately, but unfortunately, the feelings will remain. The dark place they hide will cause anguish and shame. But I knew exactly where she was coming from and the despair that was actually to blame for such shocking words to be spewing from such a remarkable woman.
Before you judge, before you pass any kind of thoughts on this, let me tell you about my friend and her husband.
I have never seen someone more patient with someone with dementia. She doesn’t yell or scream. She doesn’t curse. She is wholeheartedly in love with her husband and rarely spends time away from him. They are inseparable. They are best friends and still laugh and enjoy each other’s company. But he has started personality changes and each day seems to be declining in ways we all are too familiar with.
She has seen her own health decline, ending up in the hospital numerous times, once almost dying herself.
As we were sitting and chatting she told me her metaphor for what they are going through (we all have one—mine was swirling down a porcelain sink, unable to grab the sides to stop the inevitable disappearance down the drain). She described feeling as if she was walking on a frozen lake, and as she walks further and further, the ice gets thinner and thinner. She can hear it crackling under her feet and knows that at any moment the ice will shatter beneath her and she will be alone in the freezing water below.
Every day she spends worried about her husband. She has raised thousands and thousands of dollars for the Alzheimer’s Association. They have been very vocal about his diagnosis and all that comes with it and have spread awareness to the masses. They have been part of medical research and helped in support groups. There is nothing this couple hasn’t done to try to save him and help others. Nothing.
And there is not anything this woman wouldn’t do to save the love of her life. She is a true Christian in every sense of the word. Yet, she understands that we treat our animals better than we treat our loved ones with a disease that has no cure and only burdens families emotionally and financially.
She is seeing her husband recognize his own shortcomings, his changes and his decline. His depression and anger are palpable. Yet, there is nothing she can do besides bear witness.
This message isn’t to start a political debate. This message is to let all of you know, you aren’t alone. It doesn’t mean you don’t love your parent or your spouse you are watching succumb to this horrid disease. Just the opposite. You love them and don’t want to watch them suffer. You don’t want to see the person they are becoming because it isn’t them. And you are helpless. There isn’t a pill to take or a treatment to stop the progression. A progression with no timeline.
My friend has been caring for her husband for 11 years. And she doesn’t know if it will be another six months or another 11 years. She doesn’t know if he will be around next holiday season or if he will even know and understand. She doesn’t know if he will be able to feed himself or get dressed or get a shower. She doesn’t know if she will have to put him in a home. She doesn’t know if he will start to fall, become violent (he has had a few outbursts) or if he will one day just not recognize her, their son, or himself. It takes a toll on you that is indescribable. Sometimes not knowing what is going to happen next, or when it will happen, can lead to anxiety and high blood pressure. Stress over financial decisions and keeping someone else safe and comfortable can cause lack of sleep and depression.
How do you deal with the emotional toll? How do you cope with losing someone you love bit by bit?
This is a sacred time. Being part of the end. Even if it is years in the making. It is a time of reflection and time to connect on a different level. It is a time of love in a form you could have never fathomed.
We are all in this together. Stay strong and know you are not alone.
I am very happy to here of your services. I do not have anyone in my immediate family that is dealing with alzheimer’s at the present time but I do have very close friends that I am excited to share your website with. I’m glad I found your website. I found information about humor and alzheimers which I didn’t know so I have lots to learn. I haven’t read your complete site yet but I have already contacted my friends.
The development of different personalities….or maybe hidden ones now coming out of the closet now that defenses are down….is a real trip. We are dealing with about 4 different ones….Pitful Pearl who is constantly being wronged, Miss Know It All, Miss Doom and Gloom who is always looking at the evil side of life, and Queen Mary who is a prima donna and gets offended/angry at having to do things. I can relate none of these to the mother I knew for 35-40 years. I have heard it said that cancer is the worst disease to go through with a loved one. I strongly disagree. Not to minimize the journey of cancer at all, however, it doesn’t alter the personality of a loved one like this S.O.B. disease. I know because I went through the cancer with my dad.
It has been my argument all along also that we give our animals more humanity in their last step than we do loved ones. Why should one have to suffer beyond what is humanely expected? I do know with every ounce of my being, I will NEVER put my family through this crap if this should befall me. It destroys so much and takes so much that extension of life is a burden and not a blessing.
I also have recently found a survivor of the journey. She also gets “it”. She described it as 1/4 obligation, 1/4 responsibility/doing the right thing, 1/4 love for the person that was and she never said what the last 1/4 was so I will. The last 1/4 is wishing they won’t wake up in the morning and it will all be over.
In regards to how I feel….It’s like the movie, Back To The Future, where Michael J. Fox started to disappear when he was playing the guitar. I am disappearing. When this is all over, I don’t know who I’ll be or what I will do. This job is so all consuming. I do know that I will not be the same as the “before me”. I don’t know how my family will handle that. I do know that once this is all over, I am going to want to go to my “Fortress of Solitude” and just be alone for awhile. BTW..It’s in Neverland at the very end of Bag End. Yes, it really exists and is not just in Lala Land.
I give an internet hug and encouragement to all the caregivers out there. It is by far the hardest job anyone could have. I hope all of you have an awesome confidant that you can vent with and talk to honestly. If you don’t, please contact me at [email protected] and for the subject label it either Dementia or Alzheimers. As Bill Withers sang, we all need someone to lean on.
Take care and peace out.
I am the sole caregiver for my husband of 50 years. I am 75 and he will be 80 in a few weeks. He was diagnosed in 2018 but I knew there was something wrong earlier. He was an attorney and I worked in his office so I was aware that his thought processes were different but I guess I didn’t want to believe that there were cognitive problems. He loved his practice and intended to work for awhile longer. I know he struggled the last year or so with his work but he never admitted it to me (or himself).
After his diagnosis things started to rapidly change. Around the same time he developed End Stage Kidney Disease and eventually started dialysis. He officially retired, quit driving after a fender bender and we made plans to sell our home and move to a more manageable place.
In the meantime, our 3 adult children decided that they really didn’t care about their father saying he was emotionally absent from their lives. I still had their love but not their support with the care of their father. Now only one child speaks to me and I am grateful for that relationship but I grieve the loss of my daughters and my grandchildren. I have a therapist who has been in our lives for years and I have a very close relationship with my sister who lives out of state. Both of these people care very much about me and are constantly telling me to take care of myself. The words sort of ring empty in my ears because I don’t have any respite from the caregiving.
I am working full time at a job that give me some relief and I also have 2 “side gigs” that help with the finances. That is the other huge stressor in my life. We are not financially stable. My husband was a good attorney but a horrible money manager. I let him spend us into debt and now I am trying to build back so that I can be financially secure some day.
My stress relief is numbing myself with wine and binging on TV dramas. I do know how to change but so far I feel like I am drowning. I have very little enjoyment outside of the 2 grandchildren that I still can see. My weekends are spent doing chores and working on my 2 side jobs. I’m afraid something will come crashing down if I don’t get away for awhile.
I hope I didn’t sound whiney and self pity. I come from a background of stout Yankees and stiff upper lip and all that. I am strong but a person can only deal with so much. Only so much bandwidth in my brain and emotions.
I have wanted to say all of this to anyone who would listen for a long time. Maybe I’ll start keeping a journal for therapeutic purposes.
Take care all out there who are experiencing this caregiver burnout!!