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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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I know you're not looking for sympathy. But, you have mine, nevertheless. Thanks for sharing your understanding and kindred feelings.
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3 ReactionsThank you for the excellent post, Bill. Totally on point... and accurate to a tee.
Yep... once we reach the point in time you described, we MUST understand that "we're the ONLY quarterback" in the game... and responsible for thoughtfully / caringly / lovingly calling the plays.
And as solo quarterbacks, we need to protect ourselves so we can hang in there all the way through the fourth quarter.
Regards and hugs to all the male / female QBs here.
Oh yeah... what's the cheerleader cheer? "Dementia sucks!"
/LarryG
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8 ReactionsBill, thank you for your heartfelt and inspiring post. Yes, it is inspiring, because as you said, “ There is a feeling of relief when you just let go and realize that no one is going to help you.” And “ 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.” You are absolutely correct. The Calvary is not coming. We are entirely on our own. There is nothing I can do to cure my husband of this horrible disease, but I will do everything I can to make his days as good as they can be. For me that means keeping him here in his home and figuring out how to afford more help when we need it and doing everything I can manage and even some things that I thought I couldn’t. It is often unbearably hard, but what do I have to do with my life that is more important than caring for the person I love?
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10 ReactionsThank you so much for your post and inspiring words, altho heartbreaking but insightful at the same time. I have to take a deep breath at times and remind myself that what I am going thru is not nearly close to what my husband is going thru. I can only imagine how hard this is for him. (he has developed aphasia and can't find the words to express himself and when I ask him to repeat it, he says something completely different). He seems to get confused and scared a little bit more these days and when I ask him about it, again, he has a hard time telling me. So I just do the best I can and pray a little bit more since we started this journey almost 3 years ago. (he is only 62). I came across a poem (and hope i'm not infringing on any copyrights) but want to share what i read every night before going to bed and every morning when I wake. And you ARE right...the Calvary is not coming and we're in this alone.
"Don't ask me to remember"
Don't ask me to remember,
Don't try to make me understand,
Let me rest and know you're with me.
Kiss my cheek and hold my hand.
I'm confused beyond your concept,
I am sick and lost.
All I know is that I need you
To be with me at all costs.
Don't lose your patience with me,
Don't scold or curse or cry.
I can't help the way I'm acting,
I can't be different though I try.
Just remember that I need you,
That the best of me is gone.
Please don't fail to stand beside me,
Love me 'til my life is done
God bless and you are in my prayers
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26 ReactionsI too am in the throes of coming to realize I am alone in the caring for my husband of 50 years. He's 76 years old & was diagnosed with Lewy Body Dementia in Sept. 2020. Late in 2022 he developed Capgras Syndrome & now has the additional diagnosis of Pyschosis with Parkinsonism. We now have a home health aide 3 days a week for cognitive therapy & stand-by assistance because he cannot be left unattended. He doesn't recognize me as his wife, but a substitute nor our house as the one he has lived in for 40+ years although he recognizes that it looks just like his "other" house. I could have written your post as I'm finally coming to fully accept that I cannot fix this. & that “I am on my own, and I am doing the best that I can", as you so eloquently wrote. It is sufficient as that is all that we caregivers can do, but it takes time to really internalize it. I'll remember the phrase, the Cavalry is not coming forever & will share it with my caregiver groups next week.
I'm saving your post to read & reread when I need the affirmation you provide. And maybe share it with our children when they (or anyone else in our orbit), with all good intentions & love, try to tell me what to do & how to handle our life now, because they have no idea what it is like 24/7.
So, thank you for your post. I will always remember it. My best to you & your wife. I will think & pray for the both of you often.
Pauline
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15 ReactionsThank you for your thoughtful, extremely well written and honest account. I, too, have felt some freedom in becoming the person in charge of EVERYTHING. it’s burdensome for sure, but somehow freeing. It’s a silver lining around a very large, very dark cloud, but silver nonetheless.
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9 ReactionsIt’s important to look for the silver. Be well.
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3 ReactionsI lost my husband to Parkinson's dementia after 58 years of marriage. We were 18 and 20 when we married. He had grand ideas for our future; they actually came to be. He left me in a little paradise in the hills of Coastal California and with 4 great kids with college degrees living on thier own, who help me a lot.
Hospice was coming in for the first time the morning he died. He died of what is actually called ,"Sudden death in Parkinson's." He'd been to a Super Bowl party 2 days before . So, unkowingly, his best friends and family got to say goodby.
Taking care of him was the most stressful thing I've ever done as he had hallucinations along with everything else and would often be mad at me. I love him and have nice dreams about him now. He's not angry.
He and I used to listen to a certain Tom Petty song every Friday night before we went out to our favorite bar to meet friends. The morning after he died I had to go to Target to pick up a medication and as I stood in line at the pharmacy, that song played. I'd never heard music at Target before. A couple days after he died, my son was sleeping in his father's bed. He woke up and saw his father standing there, looking good with a smile on his face and said "Hi Gar." He was the only one who called him by that nick name. When my son looked again, he was gone..
I developed breast cancer a few months after he died. I never would have been able to take care of him. I'm fine now. It's like he knew I couldn't handle both him and survive myself.
I like to think he gave us a special goodbye and had gone in peace.
The pain is gone and I tried my best as you are doing.
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13 ReactionsWhat a sweet story...sounds like this would make a great movie. God bless you and your family in the rest of this journey.....
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