The Cavalry Is Not Coming

Bill_2001

Reposting for the new platform.

I have not posted here for quite a while, and I want to let you know that I am still here. I hope you all are doing well, and I also have a thought process to share with you.

October 1, 2022 will mark seven 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 nearly seven years, I can only site one time that I had true, respite level help without a pricey invoice arriving afterword. Once, in 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

jfkoc

Relief...a very good thing. 

Please do not stay away so long...

Just Bill

Great post Bill. I agree with everything you say. Living in the moment in the captain's seat is the only place to be effective. If you want or need something, do it, that way you know it's done and done right.

Iris L.

Bill_2001 wrote:

I 

There is a feeling of relief when you just let go and realize that no one is going to help you. 

I hear you!  I, too, feel relief!  I am alone in my bubble, and holding the outside world at bay , except for the message board members, of course.

 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. 

Crushed posted a long time ago about using a pin to unlock the bathroom door lock.  It has a tiny hole that I never noticed.

Iris

clndaniels

No one but the caregiver of PWD can know the difficulties of facing it. So glad you have found some peace of mind. Every case is different but all difficult. Been carving for HWD for close to 6 years and he is now at stage 6 and becoming harder even with outside help 5 days per week for 4-5 hours. Hope you can find some time for rest. Keep on keeping on!

toolbeltexpert

Bill I miss your posts they are well written. My journey started 12 years ago, now my dw is in a nhf, 3 weeks today. I am still her caregiver as she needs more attention than she gets here. You have soldiered along quite well. It is good to read your post.

Vitruvius

Bill_2001, I always look forward to your posts. They're always insightful.

I'm one who has recently placed my DW. The cavalry never came, so I had to take her to them. She is adapting fairly well to her new home. I am not.

Soldier on. 

Ed1937

Iris L. wrote:

Crushed posted a long time ago about using a pin to unlock the bathroom door lock.  It has a tiny hole that I never noticed. 

Some of them have a slot, and a small flat blade screwdriver works well. A pin won't work on those,

 

Ed1937

Bill_2001 wrote

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.  

Bill, I'm glad for you. I've always felt that frame of mind might be the biggest factor in being able to handle this disease. It won't make it easy, but maybe a little easier.

Soul Mate

Bill,

I, too, have been on this dementia road since 2015.  Thank you for verbalizing the journey so eloquently.

thankfully we are supported emotionally through all of our fellow forum friends. I find that a great comfort  God bless them.

Soulmate

Hoot619

The Cavalry is not Coming but you should see the hoard of Indians over here.  I really felt lost today , then someone told me to call Adult P.S.  Which I did, after the call I was a lot better. Hoot

Scooterr

Bill it's good seeing your post, I've been wondering where you've been. Another well documented journey of where your at in life. Billy Joel was right we're fighters and we have to go into the ring alone.  We get beat down, but we always must get back up only to fight again, just hoping to win one round. I guess that's what keeps me going HOPE, every morning I get up hoping today will be better than yesterday. Hoping my wife can remember how to brush her teeth, hoping she can clean herself after using the restroom, hoping not to have to put Depends on her, and hoping she can still remember me. Sometimes it's one hell of a fight, but we get back into the ring. Man it was good hearing from you Bill.

Vpomnitz

Bill, I guess I should say thanks, but I wasn’t ready to hear that yet. My journey as caregiver for my husband has just begun. I already realized that the kids aren’t coming over to “help” like they said they would. And the doctors all said come back in 3 months. Tree months? What do I do in the mean time? Try to figure it out on my own I guess. Just wish I could quit crying every time he gets mad at me over something so small or things I didn’t do. Do you ever get used to it?

Valarie

JudyMorrowMaloney

I've stopped taking my DH to doctors. They can't do anything to help him so why pay the co pay?  We are definitely on our own in this thing.

Joydean

Bill thanks for your post, like others I have missed your post. They are mostly on target. Our attitudes do make a difference. Many times I want to cry or scream, but like that old saying “fake it till you make it “, I put a smile on my face and tell myself it’s show time. It makes dh feel everything is okay so it’s okay.

Lynne D

Insightful. Thanks, Bill.

RobertsBrown

100% Bill.

Well said.

White Crane

Bill, I've been wondering how you were doing so I am very glad to see your post.  Your words are so true.  The relief you talk about is what I call acceptance and I am glad you have found it.  Sometimes I have it and sometimes I don't.  The days I do go so much better than the other days.  I have been on this road officially for over six years now.  Unofficially, before diagnosis for probably ten or more.  Like you said, you are large and in charge.  That is what I am learning to do.  If something needs doing, I'm the one who has to either do it or arrange for it to be done.  DH complains that I am "taking over."  Well, yes I am because he can't.  It is so good to see your post!  Thank you for what you wrote.

Brenda

Paris20

Yes, Bill, you’re right. Going into year eight of this miserable journey, I have finally made peace with it. My husband had a stroke a few months ago and placement in a skilled nursing facility became essential. At first I jumped into this new phase of DH’s AD with my usual zeal. I visited every day, brought extra food and told stories to him every day, came home and arranged my days around my visits.

Then Covid hit my husband’s facility. I was forced to stay away. I started reading my favorite books again. I started relaxing. I finally understood that I am on my own. Family and friends are out there but there will be no rescue. I must accept what has happened. Home has become my sanctuary again, not the place where all revolved around Alzheimer’s Disease. I miss my husband, who he was not who he is now. I stopped visiting him every day. I go 2-3 times a week and stay for a little while. He doesn’t know where he is, what year it is, or when he last saw me or anyone else in our family. I have finally started letting go. I literally risked my life a couple of years ago trying to deal with all that Alzheimer’s can do to a couple. Now I have become my own cavalry. It’s OK.

Davegrant

Bill, Thanks for your post , I also noted that I hadn't seen your post in quite a while.  I have been here since 2016 and I am strengthened by reading these posts.  You have a way of writing that speaks so directly to my experiences. The help I need the most is the emotional support that only those who have had a personal experience with this disease can give me . A few others are blessed with a natural compassion for human suffering. The good newss is that I have found this site. On reflection , I guess I thought I would find more answers from the doctors, or the experts but have come to realize that each person with the disease and their caregiver are on a uniques path that unfolds daily.  I am just trying to prepare myself for the unique day that lies before me.

Dave

Faith,Hope,Love

Thanks Bill!  I'm not quite there yet, but getting there.

storycrafter

So well put. Thank you for posting, Bill. Your words provide wisdom and relief.

Pam BH

Bill, so good to hear from you. I've been wondering how you're doing. You absolutely nailed it and I'm so glad for you and, as a result, your wife. The calvary is not coming is empowering. Thanks for sharing. Changing my mindset was the greatest thing I did for DH.

eaglemom

I'm so glad that you've posted again. And what a wonderful insightful post. 

I too have come to the conclusion that I'm the captain of this ship. We have wonderful friends whom will help at a moments notice if I ask. (They check on us, etc.) But I'm the one navigating the ship, and I'm very fine with doing so. 

As caregivers / care partners I believe the first thing we all learn is routine routine routine is best. We know our LO best and if possible and we are able we keep them in a home environment until we safely can't. Even when placed in a memory care we are still the captain of the ship. 

You are 100% correct the Cavalry is not coming, but I'm 100% correct in knowing I'm the captain of our ship! Sometimes the ship sails smoothly some days are rougher,  but it keeps sailing. 

eagle

Beachfan

I so agree with eagle mom. Over the years, people would ask me how’s it going? And I would often say, “if I go down,  the ship goes down.”   Well, that ship has sailed. DH is under the care of another crew. And I am swimming back to shore. No caregiver’s  journey is easy, but your affirmation that the cavalry is not coming is a giant step in the right direction. You are in charge now,  no one else; carry on until you cannot carry on any longer.  Stay strong.

ImMaggieMae

Thank you for your very insightful post, Bill. I think you’re right about acceptance that we are mostly alone in this fight. I also like the lines from that Billy Joel song and would add one more line: 

“Till that old second wind comes along.” And Scoterr’s comment about waking up every morning with hope. I have not given up hope for the many small wins each day. 

bigfoot2you

This is a totally awesome post............I just had the worst day with my DH since this started.  Now I know the Cavalry is not Coming...........Thank you

JC5

I keep coming back to reread your post. It is so moving and touching and has resonated with so many on this board. Thank you for sharing!

Camellia

Thank you, Bill. Just starting the really rocky part of this road, and feeling overwhelmed by the logistics. Your wisdom made me feel much better and straightened me up at the same time. Bless you.

abc123

Bill, Thank you! You have no idea how much I needed to hear this. 

I lost my mom to alz. in July. I am starting round 2 with my dad. I'm scared to death, mad as hell and I feel like I'm dying of loneliness everyday. You are 100% correct, the Calvary IS NOT COMING. There is NO Calvary.

Sincerely,

abc123

rlpete

Bill, 

I remember some of your earlier posts. Your situation reminded me of our situation. We are in our 60's, basically on our own. This is definitely not how we expected our 60's to go. We have had some help from friends but day-to-day, it is just us. I know there is no cavalry coming, no easy way out or some magical way for this awful disease to go away. I just try to keep as positive as I can and do the best I can. Yesterday was tough. Today is better. Who knows about tomorrow. My one wish right now is that I stay healthy enough and mentally strong enough to care for my dear wife.

Such good insight and wisdom here. Thanks. I wish you the best.