Denial, Loss, then Acceptance

Scooterr

   It's been awhile since I posted a thread on this forum and I hope this one has meaning. Like so many of us or maybe all of us I've struggled with denial. My wife was diagnosed in Feb. 2019 with AD, that was also the day the denial started. For the past 2 and half yrs I've lived in the world of denial. It wasn't until a couple of months ago I really learned to let go and learned to accepted the disease for what it is.

  For those 2 and half yrs of watching the losses from my wife  I was consumed with denial. Every little loss I would fight it for example, when she was unable to spell her name, or was unable to remember her birthday, in mind I thought I could fix it. With that mind set we both were losing. I was engaging the disease with all my attention, instead of engaging my wife and the things she could still do, I was trying to fix something that was unfixable. Now for me and maybe for some of you that's hard to change. Getting rid of denial was one of my biggest and worst enemies so far through this journey. 

  With my wife I have to pick her clothes out along with her shoes in the morning, dressing her according to the weather. She has been able to dress herself , put her shoes on and lace them up. The last few days I've noticed she has been unable to lace her shoes. I would sit there not saying anything and watch her struggle then I would lace  one shoe and see if she could do the other  shoe never saying anything. This process of her tying her shoes is gone,  another loss never to come back.  Four month ago I would have been in a panic mode. My thinking was automatic I can tie my shoe, she should be able to tie hers, little did I realize tying a shoe lace requires several steps (someone on this forum has mentioned this before and I can't remember who it was, but thank you). The shoe problem easily replaced with slip on shoes.

 Somehow and someway, I don't how, but the denial has been replaced with acceptance. Don't get me wrong there's still a few days I struggle with it, but for the most part it's gone. I've learned the disease is going to do what it does there's no stopping it, and I can't change that. The one thing I can change is  how I accept the losses and take them for what they are and keep moving on. Instead of giving the disease and the losses my energy I've learned to focus more on my wife and the things she can still do.

  Trust me when I finally broke free from the denial it was like the weight of the world was gone and the sun started shinning again. I'm now able to love my wife with every part of my being and embrace HER and in some aspects it's like falling in love all over. 

  I've been fortunate on this forum and made some close connections and one of which is now a close long distance friend. I thank all of you who are on this forum for the time and input you place on here. I truly believe this forum has help push me out of the dark world of denial and into acceptance.   

MaryG123

Beautifully said Scooterr.  Thank you for showing there is a way through to some kind of peace.  You’ve given me hope.

Bill_2001

Glad you have made it to this point, Scooterr. Read my post The Cavalry Is Not Coming. I have arrived at acceptance as well. As you say, it is like the weight of the world is gone and the sun is shining again. Well said!

There is something magical about acceptance. 

By the way, reading your post just helped me. I was having a down day, and it was nice to read that you have arrived at this point in your journey.  

toolbeltexpert

Dale it's so good to see your post, I guess I have accepted the losses and try to encourage those things that my dw can do, her most recent loss has been crocheting, this is a biggie its another part of her that will never come back so I accept it like you and move to something else she can still do. Singing is gonna hang tough and I am so glad. Today the activity ended early so I filled the time with a few songs and saw Judy singing. They asked when I was gonna take back my old slot of singing. Not ready for that, it takes lots of practice to sing for about an hour, so I told them I would fill in small spots like today to build back up my voice. It is such a joy to see how animated some residents get. There is a resident who used to be the piano player for her church, she moves her hands as if she was playing the notes still. I have to continually try to find some joy any joy. Thanks Dale for helping us all remember what's really important those we love so much.

Stewart

Ed1937

I joined this forum before my wife's diagnosis, because I felt sure she had dementia. When I joined, I knew nothing about dementia, but I read, and read, and read. By the time she was diagnosed, I had already accepted fate. In my opinion, if you can't accept the diagnosis, you will have a much harder time during the journey.

Scooterr, you said "The shoe problem easily replaced with slip on shoes." If you haven't heard of Kizik shoes, go to kizik.com to see them. They have laces like other shoes, but you never have to tie your shoes. You just slip your foot into them, like you might other slip ons. The heel will pop back up when the foot is in the shoe. I bought a pair for my wife, and they were great! And well made. I think someone on this forum mentioned them to me.

dayn2nite2

Bill_2001 wrote:

Glad you have made it to this point, Scooterr. Read my post The Cavalry Is Not Coming. I have arrived at acceptance as well. As you say, it is like the weight of the world is gone and the sun is shining again. Well said!

There is something magical about acceptance. 

By the way, reading your post just helped me. I was having a down day, and it was nice to read that you have arrived at this point in your journey.  

Ahh, I was hoping you would chime in, your post is all about how absolutely freeing it is to accept what is and understand that life is not like the movies, where we are rescued at the very last minute.

Jeff86

Scooterr— Great post.  So glad to read that you have come to acceptance—as the line goes, resistance is futile.  Your anecdote about switching from lace-up shoes to slip-ons is a perfect example of accepting and adapting to changes as they occur.  It’s okay to grieve the losses along the way, but day to day life is easier if we also accept them, make the changes we need to, and re-focus on what our LOs still can do. Ditto at Bill_2001.  I sense a monumental mind-shift in how you are dealing with your DW’s AD, and the attendant peace that such a change has brought.

 
We who are still caregiving still have plenty of grief ahead of us.  Everything and anything that makes the journey less arduous is good, and acceptance is way up there.

Ed1937

Jeff86 wrote:

Ditto at Bill_2001.  I sense a monumental mind-shift in how you are dealing with your DW’s AD, and the attendant peace that such a change has brought.

Absolutely! It's like two different people.

Sally56

Scooter, thank you for sharing your journey. Mine is just starting. It's hard to accept. Just yesterday at suppertime my DH wanted to set the table but just for him. I got upset because I was eating also. He said you don't want me to do anything. It broke my heart to realize how selfish I was. I'm working on it daily. Thank you.

White Crane

Scooterr, this is an important post.  You and Bill_2001 have hit the nail on the head.  Acceptance doesn't sugar coat reality.  It helps us live with reality.  It helps us realize we can't change things. And spending precious time wishing things were different doesn't help.  We all wish things were different but they're not.  Acceptance helps me love my husband just the way he is even though I hate the disease. 

Brenda

dayn2nite2

Sally56 wrote:

Scooter, thank you for sharing your journey. Mine is just starting. It's hard to accept. Just yesterday at suppertime my DH wanted to set the table but just for him. I got upset because I was eating also. He said you don't want me to do anything. It broke my heart to realize how selfish I was. I'm working on it daily. Thank you.

Acceptance here would be to thank him for setting the table, telling him how much of a help he is and adding my own place setting after he was done.

CStrope

And then there are days where I feel like I've just thrown in the towel and don't expect DH to be able to do anything. I feel like there's a huge wipe board with two columns, one with things he can still do on his own, and one with the things I have to do.  The sides are already very lopsided.  This week he came to me with bare feet telling me he needed me to "take care of those things".  aka....cut his toenails.  That was the first time he asked me to do that, and it made me think, how does his brain know that he wanted them cut but didn't know how to do it??  Just another mystery that I will never understand.

ghphotog

I went through all of the stages and I think I'm just now getting to "acceptance" but I'm still fighting. The thought of arriving at acceptance just doesn't resonate for some reason. Almost like I've given up on hopes and dreams and just accept my fate but I know acceptance will be better once I accept that I have to accept. I do know I'm getting closer to it.
Don't get me wrong, I'm not in denial of where my DW is at or my part to play but internally I still don't want to accept it as I look into the future and how much harder things will be in the next few months or years.

My wife has been in denial from the beginning. She didn't want to be tested in those early days and I wasn't going to force her. She still doesn't understand. When I have to explain to the ER or other doctors that I'm the POA because she has dementia she will cry and say she doesn't. 
I have to reexplain it to every nurse and doctor that enters the room. I thought that once I show the POA form during check-in that information would be passed along to all of the medical staff treating her, nope.

Marie58

ghphotog wrote:

My wife has been in denial from the beginning. She didn't want to be tested in those early days and I wasn't going to force her. She still doesn't understand. When I have to explain to the ER or other doctors that I'm the POA because she has dementia she will cry and say she doesn't. 
I have to reexplain it to every nurse and doctor that enters the room. I thought that once I show the POA form during check-in that information would be passed along to all of the medical staff treating her, nope.

  

Scooter, such a good post. Acceptance made a huge difference for me.

ghphotog, I was given a handful of business sized cards at a support group once. I think Alz Assoc makes them and it basically said, 'the person I'm with has Alzheimers. Please be patient. Thank you'.  You may be able to order some, or you could have some made up. I did and I think I got a box of 100 for $10. I'd just hand them to anyone we were seeing; nurses, waiters, clerks at stores, etc. Everyone was always understanding and kind once they knew. No sense in saying it out loud if it upsets you DW.

CStrope

Marie58 I did the same thing.  I had cards made up that said my husband has Alzheimer's, thank you for being patient with him.  I have found that slipping one to wait staff helps keep them from wondering why DH isn't ordering himself, or eating his food in a strange manner.

Ed1937

ghphotog wrote:

When I have to explain to the ER or other doctors that I'm the POA because she has dementia she will cry and say she doesn't. 

It is likely that she is as sure of her thoughts as you are that you were on this forum today. It is a condition called anosognosia, and here is a good link on it. https://www.agingcare.com/articles/anosognosia-dementia-patients-cant-recognize-impairment-210090.htm  

FWIW, I never felt like every person in the medical field that came in contact with my wife needed to know I had POA. They were only told if I thought there was reason for them to know.

toolbeltexpert

I want to add to accepting things. I realized the day my dw left in the ambulance. there were a ton of things that were not realized like, that was the last time she saw the cats, flower gardens, on and on. They just got grouped together. Accepting the group of things is dependent upon this big loss and accepting it, She's not coming home! It's a multitude of things you did together like sitting on the back porch watching the sun go down. This is the hardest thing to accept like premature death, like life cut short by a sharp knife. Life at home with that bond is cut clean or jagged, it got severed that day.

They, "the things you did together or separately that made life fun, exciting, meaningful" still crop up when you least expect it, then you accept it, I still grieve them at that moment, I have too! I just don't live there.

You can only accept it, when you accept that fact, He or she isn't coming home again ever! This is one of the things that happens when you make that decision to place your lo, 

Please please don't be sad, it's a long long road and life still has lots of laughter left. Today the nurse was trying to get my dw to take a pill, it just got funnier by the second, the nurse said just swallow it very nicely and I thought for a second dw  was gonna swallow the little cup the pill was in. I told the nurse, this could be a funniest videos moment. I think my wife was playing the nurse with her dry humor. They have a tough job, and I think the nurse finally figured my wife out.

Thanks scooterr I feel better voicing those things out.

Stewart 

ImMaggieMae

Thank you so much for your post. I denied my DH’s Dementia and MCI for years. It’s hard to even remember when it started. He knew he was having problems 4 or 5 years ago and talked about it with me and with friends. We all told him it was just a part of normal aging. But as it got worse, I just made decisions about more things so he wouldn’t have to. Denying that anything was really wrong meant not having to think too much about it until things got a lot worse. Even then, I thought I could fix things. Until I couldn’t. Acceptance came in the Spring of this year. Although things seemed to be improving a lot, I knew it was only due to changes in medications. Real change couldn’t happen that fast. And I know that it can’t last. But accepting the diagnosis gives me a better understanding of what I can do for him, and how to be patient.

This forum has helped me in many ways, not least of which is knowing I’m not the only one dealing with being a caregiver.

Jo C.

Dear Scooterr; what a wonderfully written Post; thank you.   I have always enjoyed reading your Posts, you have always been very kind and thoughtful.

You have reached an important point in this unwanted journey and I am so glad you shared as it is important and we all learn from it.   You are a loving and caring husband who faithfully has stood fast and true through the increasing challenges; I wish blessings for you and your beloved wife in whatever way they may come. 

J.

Dio

I'm still waiting for acceptance to sink in. I don't know when, but judging from others it will happen sometime, perhaps a lot later for me. I hope it will happen soon. I'm just coping with (and not doing very well at it) every day that's a Hyde day.