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The Cavalry Is Not Coming
May 1, 2023 will mark seven years and seven months since my wife’s dementia became obvious, and that I knew for certain that this journey would begin. I had sensed something was “a bit off” before then, but that date stands out as the moment that I knew with certainty. I use the date Oct. 1, 2015 as the beginning of this journey.
I write this today with a light heart, and a feeling of optimism that I have not felt for years. Nothing has changed – my wife is still in the throes of dementia, and I am certainly still an exhausted, burned-out caregiver and fulltime employee. I have not placed my wife in a facility – she is still at home with me, or at the adult day care while I work. As I said, nothing has really changed, save for the continuous downhill progression of this god-awful disease.
Rather than post another hopeless, angry rant filled with strife, I want to share with you how one of my greatest fears has come to pass, and how it is actually a relief. My fear has always been the following:
The Cavalry Is Not Coming.
I have spent many a day frozen in fear of being alone: Afraid of being left emotionally alone, physically alone, and spiritually alone. Alone in feeling my way around in the dark, trying to navigate dementia caregiving as best as I can. Many of us on this board post virtual cries for help. I have gone into this ordeal kicking and screaming, which is a perfectly human and natural reaction to a trauma of this magnitude.
Some measure of peace and calm is found in simply discovering that the Cavalry Is Not Coming.
Family and friends mean well, the medical community cannot do much for a terminal illness, and non-profit organizations do what they can to educate us and mitigate the damage. There is not much anyone can do to help us. We are on our own.
In more than seven years, I can only site one time that I had true, respite level help without a pricey invoice arriving afterword. Once, in over seven years.
In times past, I would have been bitter and angry about this, but I have finally arrived at an important conclusion. I am on my own, and no one is really going to help me. I am no longer bitter about this, as I have finally realized that other people have their own crosses to bear. Odd as it sounds, there is a peace to be had in such a revelation.
In the movie Castaway, Tom Hanks’ character was marooned on an island. At first, he tried to find help: Screaming to see if anyone else was there, spelling HELP on the beach. All to no avail. At some point, he accepted that fact that he would have to fend for himself and got busy with the tasks of survival. He even learned to thrive.
I have taken on the point of view that “The Cavalry Is Not Coming” to epic levels. My wife’s well-being today, as well as my future life, is completely in my hands now. I am now the King of the Castle, Lord of the Manor, Large and In Charge. Yes, I still have meals to cook, dishes to wash, showers to give, medications to manage, diapers to change, and a fulltime job to boot. Life is busy, difficult, and exhausting. But I have some measure of control, and I can call all the shots. That ugly picture on the wall? Gone. Pizza night again? You bet. Two hundred cookbooks on the shelf? We only need twenty. This house needs to accommodate my needs so that I can best take care of my dear wife in these final times. That means removing tripping hazards, redecorating in a light and happy way, and decluttering to the max.
There is a feeling of relief when you just let go and realize that no one is going to help you. The kids (if you have them) are busy building a life of their own, and friends and family have their own problems to manage. I have lowered my expectations to nearly zero, and it has been very liberating. If you have reached this stage (or passed it), you understand. If you are still frozen, kicking and screaming for help, hang in there. Look around you and remember, The Cavalry Is Not Coming.
That said, continue to utilize services that are available. Keep up those doctor appointments, call the Alzheimer’s hotline (800-272-3900) when you are overwhelmed, grab takeout, call friends and family to talk, or even ask a small favor. Use devices and technology to help you – cameras, cabinet locks, grab bars, the “good” diapers, etc. Make everything as safe and foolproof as possible. Be sure your loved one cannot lock themselves in the bathroom, or that you cannot get locked out of the house. Secure anything hazardous. You are the Safety Inspector now. But do not expect anyone to be there to help you change your loved one’s diaper, make dinner, or wash dishes. Get that mindset that you are on your own and take control of it all. Your loved one can no longer help and can no longer make decisions.
After reading this, take a deep breath, and say “I am on my own, and I am doing the best that I can.” I really hope this makes you feel better. This is a horrible situation to be in, and sometimes realizing that you are on your own is just what you need to hear.
This also means that the decision to place your dear loved one in memory care is yours and yours alone. No one can tell you where you are on this journey, and no one can tell you how exhausted you are. You are on your own, no one is going to help you, The Cavalry Is Not Coming.
With Love,
Bill2001
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What a heartbreaking letter. Beautifully heartbreaking. When my mom took care of my father, she was able to count on hospice for some time. I realize with your letter how much my mom was alone. It is breaking my heart to think of how much she sacrificed. You know I know what she would say, When you love, are devoted you don’t give up or in even though sometimes it would get to feel like you might because seeing the changes are so painful. Your letter makes me want to call my mom and acknowledge what a wonderful job she did with dad. The Calvary may not be coming but please do call the children and ask for some time. They need to know how you are coping. Feeling you have know one is so sad. Let them read this letter. I think they would rise to the situation. I’m so sorry you feel so alone. You embody and are the personification of what an honorable, devoted, loving, dutiful, responsible STRONG and GOOD person is. You are model. Exemplary in your utmost care of your wife. When the time comes, your wife will be your guardian angel and watch over you. ❤️ 🤗 🙏🏻 I will pray for you over the next few days.
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14 ReactionsMy husband has early onset Logopenia Alzheimer's which robbed his ability to speak or express how he feels. He's had the condition for 4 yrs . He is in 24 hr Nursing Care paid for by the NHS for now until he gets so bad that they take it away as his complex needs they say will be easier to manage!
My husband doesn't recognise my daughter and l or even our dogs. We visit a couple of times a week, sit there talking, singing and showing him recognisable items hoping that something might get through the fog. Its a heartbreaking disease how is robs the persons mind and personality. Its soul destroying for us to see him like this. We are on a journey day by day, week by week, month by month and year by year, living this disease with him. Its taken me a long time to understand acceptance of his condition and the deal with the huge loss of my husband. Even though he's still alive he's really unrecognisable in every way sadly. I have great empathy for those on the same journey as ours and am happy to chat with anyone in the same situation as ourselves .
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15 ReactionsWow, Bill! I wish I could print this.
Such wisdom in your words. You are an inspiration. We are not there on our journey yet, but I would love to be able to put my hands on this when we are.
Stay healthy and best wishes.
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9 ReactionsThe part of your letter that spoke most to me is where you wrote about other people having their own lives to build and crosses to bear. It's helpful to keep that perspective. When one of my brothers died of painful pancreatic cancer at 49 years old, I hated the springtime for daring to have flowers and sunshine in the face of such pain. Now that I'm in pain again watching my husband with dementia, it's good to be reminded that my friends and our families have a need and a responsibility to continue with their own journeys. They can't begin to understand my anxiety or pain, and that's as it should be.
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13 ReactionsBill....from your post, I finally have an eye opening clarity about being a caregiver. Others cannot possibly understand the daily loss in this devastating fight for the love of one's life- it is a lonely time for the person and the caregiver.- but it can be a fruitful time when faced with this knowledge and accepting of the fact that you "will have to pull up your bootstraps" and do the best you can each minute, hour, day, and forgive yourself for the other moments when you don't quite meet the goal. The children do have their own lives and families and this burden is not theirs - they only have one shot at being a parent, at having a family, and we (my sweet hubby and I) want them to be the best they can be in this role. Our friends cannot possibly understand the moment by moment changes that bring new, and often unexpected challenges, so it is not their fault that they are not here with any consistency. Even when so many have promised to come by more, get together more, come and stay so I can get away for a bit (in 5 years this has happened once for two long and amazing hours), etc., I just smile and thank them - after all it is a lovely thought. And you are totally correct, "the calvary is not coming", no one is coming.....and those words will be displayed on the inside of my medicine cabinet as a reminder that I can and will stay the course with a renewed strength, and I will treasure the rare moments when that flicker of personality appears and evokes a happy memory. Thank you for this well written post. Your words have made a difference and are powerful - today has already started off much better. Hugs and prayers for you and yours.
Jan
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18 ReactionsThis is a beautiful response to Bill’s posting. You too have spoken “truth to power”, as the young people say.
Everyday is a day and we do our best. I want to live this life so my epitaph could be “She never gave up and she never gave in”. Some may recognize this line from a Billy Joel song. Thanks for posting your thoughts.
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7 ReactionsTo Bill2001- your posting is so real and so accurate. I wonder how many readers, like me, found themselves nodding and saying to themselves, “Yes, this is really it. This is really it.”
I have a made-up motto I repeat to myself- “It is what it is and it ain’t what it ain’t and never the twain shall meet”. Helps to quickly squash any “if only” or “why me” thoughts that try to squeeze through.
I also go granular with thoughts of what I’m grateful for- like The Brothers song- “”There’s a roof up above me, I’ve a good place to sleep, There’s food on my table, and shoes on my feet.” Here at home, the robins are back, the azaleas are blooming, all my major appliances are working…😊
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17 ReactionsThank you for your absolutely honest and helpful insight. My journey is just beginning with my husband. @IndianaScott had laid the pathway down for me last Dec2022 when I had concerns re: memory loss, etc. We have recently received results of the neurology exams, including PET scan. We are looking at either Alzheimer’s or Frontal Temporal Dementia, to be determined at a later exam. As you can imagine, my mind is spinning with how to navigate the future. Your words have given me the structure upon which to build our life together going forward. A huge thank you to all for your support and shared experiences. Knowing that I can reach out here has been an enormous help.
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10 ReactionsI, too, lost a sibling in the Spring to the pain of pancreatic cancer. She was my baby sister, youngest of 3, a very young 61 years old, and in April. It was not fair. Pancreatic cancer, as you know, is a terrible disease and so hard to diagnose while there is still time to treat it. Last Fall, I lost my other sister (the “middle child”) to heart attack, and my husband just recently lost his sister to Alzheimer’s…and we fear we are headed down that path. I say this only so you feel so not alone…not for sympath. We all have different battles to face, and our family and friends will support us in the way that is best for them. Hugs to you…and please let us know how you are doing.
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6 ReactionsWhat a beautiful response!
I so love and appreciate this group.
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6 Reactions