Has anyone ever said something to you that resonated like a bell? You know, something that on any other day you wouldn’t even have remembered it, but because of your situation, the sentence or advice shouted at you like a message from Heaven? You hear trumpets sounding and a chorus singing, and your heart says, “Yes! Yes! Those words were intended for me!”
Well, I had one of those moments not long ago, but in order for this post to make sense, I need to fill in a little back-story. I’ve lived a blessed life. Almost forty years ago, I met the man that would eventually grow old with me. He was a wonderful husband and father. He supported me and encouraged me for four decades, and I couldn’t have asked for a better person to walk by my side while we raised our children and built our lives. But eight years ago, something went wrong. The brilliant, funny, amazing man began to change. He became anxious, quiet, forgetful and even delusional, and I didn’t understand what was happening. After spending a year with one doctor after another, we finally received a diagnosis that would change our lives forever.
When the doctor at the Cleveland Clinic said, “You have Parkinson’s Disease” my heart dropped.
My father had had PD for 20 years at that time and he was in a wheelchair, unable to take care of himself and placing my mother in a caregiving situation that was quickly becoming too much for her 75 year-old body to deal with. I didn’t realize that “just” having Parkinson’s would have been a blessing as the dementia that soon followed my husband’s diagnosis would make Parkinson’s seem like a walk in the park.
The eventual diagnosis of Lewy Body Dementia shifted our existence from blessed to cursed and all the rules changed. The man I knew slowly disappeared and the blessed life I’d enjoyed faded to a memory. While I still loved him, he was different and the relationship we had, changed from being equal partners to “caregiver and loved one.” And the change was hard.
At first, he was capable of taking care of himself, and my life didn’t alter much, but slowly, his capabilities declined, and I found my role shifting to accommodate his needs. Little by little, my freedoms disappeared as it became impossible to leave him alone and he lost the ability to leave home and go with me. As his legs weakened, I could no longer bathe him or get him to the bathroom. Sleeping a full night through, running to the store, having dinner in a restaurant, going on vacation—all things I took for granted before—became distant memories. And I missed them.
I knew (and still know) that his condition was only going to get worse and the end stages are not pleasant. I didn’t give him Lewy Body Dementia. I would have done anything within my power to have prevented this cruel disease from landing on one of the most wonderful people I have ever had the good fortune to know, but I’m human and exhaustion, frustration, and anxiety take their toll.
I want this to end.
I’m not sure how much longer I can survive this illness, even though he now lives in assisted care, the day to day care is still very much a part of my life. In some ways, it’s harder now. Not physically (I could no longer do that part) but I still have to keep track of all medications, make sure the aides are following directions, make sure the nurses and doctors don’t do something those with LBD can’t tolerate…and so on. When I was totally in charge, I kept everything level and consistent. Now, the constant influx of new aides and workers means I am continually training new people how to care for him.
I want this to end and I feel guilty for wanting that.
I want my life to return to some sort of “normal.”
I want his suffering to be over.
I don’t want him to go through the end stages.
I’m tired and I want to run away. But I haven’t because despite it all, I love him and I will take care of him to the end whether it be mine or his.
And this is why my friend’s words warmed my heart and inspired me to go on without the constant guilt that seems to come with caregiving.
This friend’s wife has been fighting Lewy Body for about 5 years longer than we have. He’s the moderator of an on-line support group for caregivers and one of the most compassionate and dedicated caregivers I know. When I was lamenting my exhaustion and the guilt I felt for wanting this to end, he confessed he had the same feelings. I was surprised. I never would have guessed he shared those emotions. His wife is also in assisted care and he’s also beyond exhausted.
“But,” he said, “My thoughts are not my actions”
And I knew exactly what he meant. It’s okay to long for the freedom that awaits us at the end of this journey. It’s okay to want this to end for both our loved one’s sake as well as our own. It’s okay to be human and want this nightmare to be over. It’s okay to hate the life of caregiving that has been thrust upon us. The reason it’s okay is because our thoughts are not our actions. As long as we still provide love and care to our loved ones, they will never know our thoughts are on the future and a life free of Lewy. All they will know is that we love them and we are taking care of them. Even if they are no longer aware, they will receive the benefits of our love and care and that’s the best we can do.
It’s okay to be human. It’s okay to think about a life free of Lewy Body Dementia because, our thoughts are not our actions.
Whew…
*update: Just a few weeks after this post, my husband began his final decline and passed away on November 13, 2016
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Lewy Warriors 
Thank you for this, Lisa Cooke! I needed to read this today!
Martha Foote
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I’m glad it was helpful, Martha. I think all of us feel guilty for wanting this to end, but we trudge forward because we love the ones in our care. That doesn’t mean we have to love all the issues involved in giving that care. We get tired, just like everyone else.
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Thank you for your open honesty. My mother has Lewy Body, and even thought we have been dealing with this for 4 years, she is still fairly coherent. Her mobility, on the other hand, recently made us make the change to a memory care unit. I love my mom dearly and have been doing everything in my ability to help her (and I) navigating this horrid disease. I too have read and know what comes next, the declining….. Even with her adjusting to her new “apartment” the road is still not easy. I too wish for a day when she is free from this and I can get on with my life. But then I get the guilt, knowing, all she would love to do is get back her life as well. My husband told me once, it isn’t your mom you want to end, it is the situation. SOOO many times I have repeated that to myself.
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I agree with your husband totally. Who in their right mind wouldn’t want this nightmare to end? Unfortunately, that means our LOs are no longer with us. It’s a horrible dilemma. If you haven’t already, read the post called “The Dementia Paradox” on this site. It sums up this issue. Blessings to you. You’re tackling a tough job.
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Thank you Lisa; your talks are always so spot on! It is so difficult to go from making decisions together to making them alone, even though your partner is still physically there. No one really gets this, but those in the trenches here.
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So true, Karen. Only those who walk in our shoes can understand the journey we take. Blessings to you!
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So true Lisa, we are definitely in the trenches and so few understand, I hate making all the decisions, it is so hard.
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I, too, agree that the sudden transition to primary caregiver/decision-maker was a difficult time. Suddenly, you find that you no longer have a partner to which you can confide when making important choices. My wife and I have shared our lives together for 43 years. Yet, when she began her progression with early onset FTD/PPA, I very quickly felt the loneliness – especially given the fact that her aphasia basically destroyed her verbal and written language skills.
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This blog brought tears. Even though my husband has been gone for 2 yrs I remember feeling the same way. Our journey with Lewy may be over but the memories he left behind are not good. I try not to dwell on the past but it is hard. Thank you for your words. I know you understand.
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Thank you for commenting, Pam. Early in my husband’s diagnosis he told me one of the things that worried him is that our wonderful marriage was going to end in a horrible way. I fight hard to focus on the 35 good years we had before Lewy moved in. It’s tough.
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I will never forget my husbands face when we were told and he said, ‘I did not want it to end like this’ and I just cried and told him it was just a bump in the road and we were still a team but I never knew what lay ahead as far as this ‘bump’ has become a mountain!
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It is comforting in an odd way to know that other caregivers share the same thoughts about wanting the nightmare to end – a paradox for sure. On the one hand, you secretly wish that this is all a bad dream, and that your loved one will suddenly return to normal, and then, reality sets in. As a caregiver, your world has been turned upside down, and sometimes you feel as if there is no end to the daily “Whack a Mole” game that you play with your loved one – you no sooner fix one situation when another arises. When I feel as if I am at the end of my rope, I sometimes have to flee the scene, go out to the garage, let out my primal scream, and then return to face my new reality. Then, I feel guilty for having reached my boiling point when I am supposed to be the loving caregiver. Not only that, but I often feel guilty for wanting this all to end. This is not how retirement was supposed to be.
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Yeah, I hear you. This wasn’t at all what I thought my retirement would be like. Right now, I’m holding in tears while I watch my husband wrestle an ice cream cone. (The ice cream is winning.) I’d dreamed our life would be much different at this point, but it is what it is. I saw a poster the other day that said,”They say what doesn’t kill you makes you stronger, but how are we supposed to know which is going to kill us?” It kind of hit home.
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Absolutely. Funny that you use the term, “it is what it is”. I find myself repeating that phrase often when explaining my caregiver role to well-meaning friends. I think that it should become part of the caregivers creed. You’re exactly right when you ask which is going to kill us first. Stay strong.
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I so relate to your thoughts Jerry. We have been married 44 years and retired hoping to travel and this new reality hits me in the face hourly. It has no mercy pushing us to our breaking point and then we feel guilty. So not fair- it is comforting to know I am not alone.
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Since many of you commenting here mention that your loved one is already in a memory care facility, I would like to have thoughts/suggestions as to how you are paying for the high cost. I have recently toured local facilities with an eye toward the future. My wife and I are both 65. For the time being, I am physically able to care for her at home, but I fear that my stamina will give out before her dementia ends. It seems that many of you with loved ones in assisted living feel more stressed than when they lived at home. Now I’m conflicted, as I don’t want to add financial stress on top of emotional and physical stress. Your thoughts?
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Yes, Jerry I am with you. I am taking care of my husband and don’t have the means to put him in a care center yet I don’t know how long I can do this alone. We have worked all our life and just make enough not to qualify for government help of any kind so what do we do? Especially if people that have placed their LO’s and still feel stressed. Is there a answer?
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Jerry, my husband and I moved into a non-profit Continuing Care Retirement Community (See post on CCRCs on this site) when he was early in this dx. The assisted care component is very reasonably priced or I’d be in trouble now. As for the stress, it never goes away, but I’m dealing much better now. I’m getting sleep each night and no longer have to do the lifting etc. It also gives me the freedom to get away for a few hours each day and even take short trips. If I didn’t have my husband in assisted care, I couldn’t do this anymore. I’m not strong enough physically or mentally. Eventually, everyone needs help.
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I read the post on CCRCs that you mention. I had not heard of those type of facilities before. Thanks for you sharing. Unfortunately, based on the post, my wife would not qualify because her progression is such that she needs assistance with all ADLs.
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Not all have health requirements before entry, but those that don’t are usually more expensive. However, as a rule, they are still less expensive than nursing homes.
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My first time to respond but this message was so helpful. I do want this nightmare to end but feel so guilty for wanting that. I have been full time care giving for my husband since 2011 and I am 68 and feel like I am not going to survive much longer. You helped me feel not so guilty to hope for a end to this, I didn’t want to lose my husband ever but Lewy stepped in and took him away already. He was and is my hero and I will be by him til the end but my strength is going so I pray if I do go first there is someone to step up. It worries me. This is a helpless feeling for sure.
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I think most of us understand and share those feelings, Pamela. Only those who’ve done this can understand how difficult it is. Thank goodness for support groups and the help from other caregivers. Blessings to you.
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Thank you Lisa for writing on this most difficult topic. I too have felt guilty thinking about a future free of caregiving. And I also pray that the end stages don’t happen. I fear I will not be able to manage. Thank you for relieving my guilt knowing that my actions are not my thoughts! Bless you Lisa and Jeff!
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