Differences - dementia journey vs. stage 8

Ed1937

This is what I found to be true. It might vary widely for others.

I found this forum because I suspected my wife had dementia, and I learned so much here early on, and followed suggestions that made sense to me. When she was diagnosed (June 2018), she was pretty clear headed, but had problems mostly with numbers and some short term memory. The early times were filled with doctor appointments, organizing our assets, meetings with a CELA, and more doctor appointments and testing for something unrelated. It seemed like I was going continuously. I won't go into all the losses she suffered, but many of them hit me like a ton of bricks. At the end, she had major problems with aphasia, some delusions, double incontinence, and some anger most days.

I was fortunate because she never got violent or did some of the other unthinkable things others have reported. And I had family who would stay with my wife if I needed to have time off to take care of whatever needed to be done. And my daughters cooked for us quite often. So I had it easy, compared to others. Even so, it was extremely hard.

She was only stage 6 when she passed away of a gastrointestinal bleed, more than 15 months ago. Now I went to bed when I wanted, I slept until I felt like getting up, I didn't have to cook if I didn't want to, and I didn't have to take care of anyone but myself. As good as that sounds, I was miserable. Miserable.

While I was caregiving, I knew progression was happening, and I knew new losses were coming. When those losses came, it hurt, but I knew they were coming. But I didn't know what hurt was until she died. It is getting easier, but I never know if another wave of grieving is coming or not. It hasn't stopped, and I'm not sure it ever will. She meant so much to me that I have little to live for. When I go, we'll be together forever. She's waiting for me.

M1

Thank you for this. I hope for you that the ongoing passage of time will continue to help you heal and find ongoing joy in life. It's what i hope for myself and for all of us who reach stage 8. But I also understand the feeling that the major relationship of my life is behind me now, never to be replaced.

Seems to me that the major thing stolen from us caregivers by this experience is the ability to stay young at heart. I would like to retain that, but it remains to be seen.

Joe C.

Ed, Thank you for sharing your experience. I know there will be a different kind of loneliness/pain when I transition into stage 8 and I will not truly understand it until that time comes. Hang in there my friend!

Denise1847

Dear Ed,

I have learned so much from this forum and you are a major part of it. I hope and pray that you find peace and joy in your years ahead. It is apparent that you and your DW had an amazing love relationship, one that cannot be replicated. For whatever it is worth, I ask you to think about what your wife would want for you now? What would you want for your wife if the roles were reversed. Yes, you really had a one in a million relationship and you were so blessed by that. Many of us, me included, have never experienced that gift. Please, please, please fight through this sadness to get to a place where you find joy again. I am not trying to minimize your pain by any means. You have contributed so much to all of us in our journeys, you deserve to experience joy and peace again. God bless you Ed.

JeriLynn66

Ed, while I am still new to this forum, I already appreciate your wisdom and willingness to help others in this journey.

I pray you peace and comfort in the days ahead ….

Davegrant

Ed,

I too have followed your story of you and your wife's journey. I found that your writings spoke to me in a clear concise tone that I could follow. I check in every day and try to follow and learn from the experience of others. You are one of my main sources. My journey continues, and as frustrating as it is some days, I am glad that she is here and that I am not alone. I am hoping to keep things as they are until one of us passes or that I can no longer meet her needs.

When I first joined AA at 31 years of age, I found that I came home and that I belonged, I get much the same feeling when I meet a caregiver, an immediate sense of being in the presence of a person who shares my emotional experiences at a deep personal level and only a few words are needed.

I hope that you continue to share, and that sharing will help ease the loneliness.

Dave

CindyBum

I'm so sorry, Ed. I know that my own crying now while my SO is early in Stage 4 is as much about how sad I am for what's happening to her as it is my own grief at the realization that I will have to find a way to live without the love of my life here with me. I can't even imagine how much bigger that grief will be when that day comes.

A big hug to you as you find your way.

Just Bill

Hey Ed, my wife passed 3 Saturdays ago. The grief is overwhelming. I think it is too much for the brain to process all at once so it does it in stages. I am in the process of transitioning from full time caring for someone to rattling around the house trying to find my way with new routines and activities. Kinda like if you have been hit hard and put on the ground. Your first instinct is to get back on your feet and make sure everything is still working. Most of the time I use logic; Everything that lives dies this is something humans have been dealing with for thousands of years. Or I use philosophy; I would rather have shared 41 years of my life with a sweet beautiful human being and lost her than never have had the experience at all. Mostly that works but sometimes usually at night and usually Saturday I get a dose of mind numbing emotional anguish at the thought of never seeing her again. The only way I can get through that pain is self hypnosis; I tell myself to "eat the pain, pain can be converted to positive energy" I will repeat that over and over while exercising. It helps and it fuels a great workout. I am sure for us as caregivers it is not only grief but maybe a little PTSD thrown in the mix as well. I am pretty sure I will be wrestling this emotional bear the rest of my life, all I can do is hope it gets easier. If it doesn't I will just keep adding to my toolbox of grief abatement techniques. Its a funny combination of emotions. Euphoria from freedom to do whatever you want without having to compromise to the anguish of your life travel partner is gone forever. Manic depression is a good description of what I am feeling. Not the clinical diagnosed version. The version where I can be really happy one minute and really sad the next. Keep on keeping on Ed, your wife would want you to be living your life to it's fullest and be as happy as you can be. I have gotten really good at imagining my wife is with me and it is the version of her before she got sick. I imagine her telling me "suck it up buttercup get off you ass and live".

jfkoc

I do not think that there are really any words to define the loss.

I would go further and say that one never is rid of the grief but as someone said we learn to walk with it at our side rather than being consumed by it.

We are forever changed. That does not mean that we cannot laugh again or to find meaning in the day but life is different.

Certainly our loved ones want us to go on with our lives and we do go on but I think it is with a space in our souls that will remain forever.

Drapper

Ed - I’m curious if you have tried a grief support group. Either in person or zoom. If not, you may find it brings you the same comfort that this forum has given you. Dr Natalie Edmund has just added a grief support group to her weekly agendas. (even if you tried before and it didn’t help you , you are in a different place now )

I was a widow when I met my current husband. He was able to bring me joy again, something I thought I would never have. I have also made many new friends since that time, who make my life better.

I found the support groups I joined helped me move on in general , and to appreciate each day more, as our time here is limited. We should spend it in the best manner we can - in peace, not in pain and loneliness.

Jgirl57

I continue to learn from you and others and I appreciate it so much. I was actually thinking of you a short while ago. My HWD/Alz and I were drinking coffee and looking out the window and a beautiful butterfly lingered outside our window. I truly began to smile. Peace to you as “stage 8” continues to be a part of your life.

A. Marie

Dear Mayor Ed,

First, let me say as so many others have said that we look up to you as a role model and wish you well. From the bottom of my heart, I wish you peace and comfort.

And, yeah, I'm just past the 4-month mark of Stage 8, and it stinks in all the ways that you (and M1 and Just Bill, two other veterans I read and respect) have described. I keep trying to put one foot in front of the other and keep moving, but dang me, it's hard. Some days, it feels like trying to jog through molasses.

The one positive development is that I can now access a few more memories of DH as he was before Dr. Alzheimer's beastly discovery wrecked our lives, over a decade ago. I was honestly afraid in the latter phases of Stage 7 that I wouldn't be able to remember the wonderful man he was. Thank goodness, I'm getting some of those memories back.

Love and sympathy to you, M1, Just Bill, Lady Texan, Lorita, and everyone else in Stage 8. (And all the other stages, for that matter.)

Anna2022

Ed,

I am a relative newcomer here but I have learned so much from you and your wife's lived experiences. You have helped me so much by sharing your hard earned wisdom. I wish you a gentle journey ahead.

Sincerely,

Anna2022

Joydean

Ed a true friend and to me a hero . I’m sure you have no idea how many people look up to you. It’s not just the folks on this forum, the information you share here, I will speak for myself, I have also shared that information with others. No I don’t use your name, just a very good friend shared this.

your family also needs you. Your grandkids. You are not only needed but someone that so many appreciate. You wife was a very special lady and you honor her everyday. Prayers and hugs to you!

Ed1937

Thank you very much, friends. I'm actually doing pretty well. Yes, it hits me every so often. But I think I'm doing OK.

My heart aches for those of you who are still in the game, and will have to face the ending at one time or another. Dementia, whether it is in the rear view mirror or active, offers nothing to do with fun. I'm sorry you're here to read this.

Soul Mate

Ed, it's been ten months since my husband passed. Like you, I feel the grief will never stop. What keeps me going is the quote: "Tis better to have loved and lost, than never to have loved at all."

I have a few friends and family, married and single, who feel I should "be over" the loss by now. Since none of them are widowed, I forgive them for their lack of understanding and look to other widows for support.

CStrope

Ed, I am coming up on the 3 year anniversary of DH diagnosis. I joined the message boards shortly after. I was just thinking the other day about how many people that I used to respond to, and that responded to me are in stage 8. This life seems to make you feel like the well known hamster on a wheel, you just keep going and going, and time just passes. Before you know it you're "X" years into this mess, and either still dealing with it, or in stage 8.

I think about stage 8 a lot! I wonder what will be left of the old me when that stage finally comes. How will I feel about DH after he passes (unlike you, I did not have a wonderful marriage). But for now, I just hope to approach each day, each month, each stage in the best possible way that I can, and hope there is enough left of me to deal with the final stage. I am so glad you always had people willing to offer support and a bit of respite when you needed it, I do not have that luxury and work my full time job from home while still caring for DH.

As others have said, thanks for all you've offered over the years on our discussions. I'm so happy for you that you were blessed with a wonderful marriage.

ghphotog

Ed, you are an inspiration for all of us who are still in the game to keep going and carry on. Find strength when we are weak. I forgot where I was going with this, uh oh! Keep on keeping on Ed.

H

GiGi1963

Ed,

Your post and words of comfort and advice are the first thing I look for every day.

Keep sharing with all of us. And thank you.

Beachfan

Ed,

I waited almost a week to respond to your original post, hoping it was just a knee jerk reaction- - a down in the dumps moment, a gray day where reminiscence hurt all over- - typical stage 8. Thankfully, it seems you have rebounded from your “funk” for the moment; I hope and pray each day seems more bright than dismal going forward.

It is almost 6 months since DH passed; almost 2 years since he was no longer at home with me, and probably almost 4 years since he knew who I was or recognized any family. I’m approaching 14 years since “formal” diagnosis. It has been a long journey; however, like your DW, my DH was relatively easy to care for- - no aggression, no purposeful wandering, managed incontinence, generally content until the end.

Navigating stage 8, so far for me, has been relatively quiet and uneventful. However, two random things come to mind as especially hurtful when I experience a dark moment. (1) When I look back over pictures or videos of happier times- - DH laughing, romping with grandkids, coaching, relaxing on the beach, I see myself wearing articles of clothing that I still have and still wear. For some odd reason, this tears me up. (2) When DH and I were dating, there were no cell phones, text, email; during the summers in the 60’s, we were just 2 college kids, separated by miles, seeing each other rarely. I recall one summer, missing him desperately, so much so that I felt a physical ache. I never felt that pain again until I lost him, now it comes and goes without warning. Just two random gut punches that characterize stage 8 for me.

Ed, your shared wisdom, your thoughtfulness in researching old posts and information for “newbies”, your love, honor and respect for your DW and your family are just a few of the many golden attributes that bring comfort to this group. Like you, my heart aches for those still in the trenches and I’m sorry for anyone reading this. Better days ahead.

toolbeltexpert

Ed you've been here when i went thru my trail and have been a voice that was always appreciated. Just the other day I was thinking, what am I gonna do when 8 hits. Every day I drive to the mc like clock work. But once I am there It's not the same thing every day, but it's a routine that is getting ingrained in me. Right now I can't envision pass that. I am going thru our pictures and giving them to the people who are in the pictures. I am giving certain items that have family meaning away, I think I am prepared for that day, but from what I have read I really won't know that pain of forever gone till its here.

Placing doesn't equate to that, but it is certainly the hardest thing I have had to endure.

@Beachfan you hit the nail on the head when you talked about the ache, that is something I never felt till I placed and it was a constant thing every single time I left. It definitely is a physical feeling and it is less frequent for which I am thankful.

Ed1937

Beachfan, I think you and I both hit the lottery when we said "I do". It's kind of interesting how we can all be different, yet all the same, just like PWD. I have digital copies of 8mm movie film from the early 60s into the early 80s. Much of the film is underexposed, and a little out of focus. But it's all we have (other than photos), and I wouldn't give it up for anything. I can watch it, and see her when she was young and healthy, and it doesn't bother me to watch it. It's a little different when I listen to music that we both enjoyed through the years, or when I went to see the White Sox game in Chicago, about two months after her death. Two of our sons and a daughter went with me, and it was one of the worst days of my life. She was supposed to have been there sitting beside me.

Stewart, I understand about the routine things you do. I think we all have a few of those things while being caregivers.

Before you give things away, be sure you won't regret it later. When the time came that I felt ready to get rid of a lot of her things, I had my daughters come over to take whatever they wanted of her jewelry. I told them whatever they didn't want, to give it to a local shelter for battered women. As they were going through her jewelry, one of our daughters told me she had a necklace with a heart with the inscription "Ed and Carole" on it. Didn't I want to keep that? I told her to get rid of it. What a mistake! It's gone, and I'd like to have it. Maybe one of our daughters took it?? I hope so. So think about what you might want to keep later on before giving it away.