The Cavalry Is Not Coming (reposted for new platform)

Bill_2001

As promised, I have re-posted this to the new platform so folks could find it.

The Cavalry Is Not Coming

April 1, 2023 marked seven and a half years 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,” and I have done that many, many times. 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 over seven years, I can only site one time that I had true, respite level help without a pricey invoice arriving afterword. Once, in more than 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.

Since I posted last, 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.

Nobody's going to help you, You've just got to stand up alone

And dig in your heels, And see how it feels

To raise a little Hell of your own

---Trooper, Raise a Little Hell (1978)

You're only human, You're gonna have to deal with heartache

Just like a boxer in a title fight, You got to walk in that ring all alone

---Billy Joel, You’re Only Human (1985)

With Love,

Bill_2001

Jo C.

Thank you very much for your thoughtfulness, Bill. This is a very important writing and speaks not only from experiential wisdom, but from the heart.

J.

Davegrant

It is comforting to know that your article will not be lost.

If I am recalling correctly, one of the characteristics that attracted me to my wife 45 years ago was her strong emotional presence at a time in my life that I needed that security. It should be no surprise to me that the current role changes include the emotional challenges and explains to me why they has been the most difficult for me. Your article has helped my acceptance and understanding.

Thanks for sharing.

Dave

Crushed

https://www.youtube.com/watch?v=HUq8gXhI0y8

Why us?" "Because we're here, lad. Nobody else. Just us."

Dio

Thank you, Bill. It's one of the best posts. Many of us go back to it to be reminded of the lot that we're in, and that we need to carry forward pulling on our own strength.

demush

Thanks for your post Bill. You literally touched on almost everything I am going thru and the final realization of my situation!! I having been wading through this for almost two years and I'm sure there is so much to learn when it comes to taking care of my wife. A person who was very strong will and fearless.

This is not a good situation to be in, but it's good to know that I am not alone.

Another Day

I remember when I was sure something would change, the insanity of the shadowing, always telling me how to do everything, but not doing anything himself. Then the paranoia that I was seeing other men when I hadn't left home....the arguing over him telling me that I was taking over. Him telling me that I do everything wrong and he is the only one who knows how to do things.

It was only when I found my way to this site that I didn't feel so totally alone and isolated. Thank you for summing up so well all of the feelings and fears. I know that I'm not the first, I'm not the last and I'm not the only person going through this journey.

Bill_2001

Bumping up to help new members.

Whyzit2

Time to bring this back up to the top of the list of entries as it is excellent reading for all levels on this journey.

LaneyG

Everyone said it all. Thank you Bill for this post! Eye opening, thought provoking, inspirational and oh so true. We just do what we can do one day at a time.

fmb

ttt

Bumped to top per request.

Jinx Darling

Thank you Bill!

I have taken comfort in the knowledge that there is no Calvary, I looked, lol, they are not coming. Since then I have tried to pull myself up by the bootstraps and carry on. I am now at that point that I am making the hard decisions on my own and I have no choice but to move forward and keep on making them.

JC5

Thank you for reposting. This has been my favorite post of all! Your words bring truth and comfort and enlightenment to us all!

Iris L.

Butterfly Wings posted an article about a study documenting that caregivers are isolated and stressed out. They could have saved themselves the effort by just reading Bill's post. Then, if they weren't too shocked, perhaps they could work on some solutions.

Iris

WIGO23

My daughter is well meaning and kind and keeps insisting we are not alone in this challenging journey. She lives over 500 miles away. She wants us to consider moving near her.

I am afraid of having any expectation that moving near her will help. I am afraid of disappointment and making life worse.

She is a professional who travels a lot. She has a very active social life with her husband. Looking in from the outside, I simply do not see her having the time to provide real assistance. I expressed this to her kindly but she kindly insisted I am wrong. Could she be right? Am I overlooking a possible improvement in our lives because I don’t believe real help is possible?

The Calvary Is Not Coming resonates but is there any way to win a few battles even if you ultimately lose the war?

Another Day

Thanks again Bill, I just forwarded this to a friend whose wife has breast cancer and as a result of treatments now is suffering with dementia as well. You've touched a lot of lives with your very true and heartfelt words.

FAHNJL

I needed to read this today. Not only is the cavalry not coming, the cavalry doesn't get that you're not coming to help them anymore either. No, I can't give you a ride to the store. No, I can't watch the grandkids tonight. No, no, no.

I have got very good at saying no, and I don't feel one bit bad about it. I can't totally blame them for being as clueless as they are - unless you're living this, you just don't get it.

ThisLife

Hi WIGO23, So, sorry you have a need to be here but welcome. My H has Alzheimer's, and we moved 2300 mi to be near our son. He wanted us closer to be able to help. He's a VP of a large construction company, travels, and cannot drop everything. His assistant keeps his calendar and it's always packed. I feel he meant well. I tried to be very candid about my struggles and his dad's needs and declines. Unless you live it, you don't know, and my son was not prepared for what was needed. Many on here have shared looking at where would you want to be after the journey is over. Also, what social connections do you lose? How will that be replaced? What is the availability of doctors, transportation, and location of shopping, etc.? Make a list of your specific needs right now daily/weekly/monthly. Then have an in-depth discussion with your daughter about what she envisions her daily/weekly/monthly involvement would be specifically. I wish you the best in whatever decision you make.

hendersontracy12

https://alzconnected.org/discussion/comment/168245#Comment_168245

Thank you for sharing this, sometimes I think I will lose it when my DH goes off about things that are really not happening. I’m learning to not take it personally.

ImMaggieMae

Thank you for reposting this. When I read it for the first time, you helped create kind of a turning point, one of acceptance for me. You are correct when you say, “Some measure of peace and calm is found in simply discovering that the Cavalry Is Not Coming.” You have been down in the trenches, boots on the ground for a long time. You’ve come up with a lot of workable solutions to the day to day challenges. There is a strength in realizing we are on our own and knowing that there are others who are in the same leaking boat and doing whatever we can to patch up some leaks as we go and make things as good as we can for our loved ones. Nobody who isn’t fighting this fight has no idea what is involved. The only real help (other than a very few doctors and medical professionals) comes from people on these forums who share helpful solutions and workarounds. Thank you for being here.

M1

ttt

Stan2

https://alzconnected.org/discussion/comment/198787#Comment_198787

Our daughter lives in the same town that we do. She too is a busy professional with a life of her own. She tries very hard to help, she comes most mornings for a short visit and attends doctor appointments when she can. She even sometimes brings meals that she or our SIL have prepared. While I appreciate what she does I am not sure anyone who does not live this situation 24 hrs a day can truly understand how hard it is.

In my opinion, if your LO is still functioning I would be hesitant to uproot them and take them to a place they are not familiar with. Of course this journey is different for each of us and what is best for me may not be the best for you. I wish you the best.