Is it True - after Alzheimer’s

Nowhere

(Copied from Caregivers of Spouses and Partners strand) 

I’m reading Patti Davis’s (daughter of Pres. Reagan) memoir, “Floating in the Deep End: How Caregivers Can See Beyond Dementia, and she asserts “that once Alzheimer’s enters your life, it never really leaves”.  I’m wondering, for those of you have had a partner/spouse die what about it is still in your experience that might be different from losses due to another disease?Everyone here would like for our partners to be free of Alzheimers, and relief is often expressed hand/in-hand with the grief of finality that their travail has ended. So, if it’s to stick with us after our loved ones passes, what is it that sticks? Maybe it’s a thick scar of the long goodbye; Will be cumbersome to carry forever? Is there something we caregivers might understand or do  to better prepare for the final goodbye?

mommyandme (m&m)

I think losing a spouse or partner to this disease must be so different than any other friend or relative. Since my mother was my buddy in this journey I’m not sure if the after affects can be near the same.  I’m still so thick in it 2.5 mos later, I have no wisdom yet.  I look forward to others sharing their wisdom though.  Thanks for sharing.

chrisp1653

My Barbara passed on December 20, 2020 at about 8:30 pm.

I remember that when I climbed into bed that night, I had to remind myself not to turn on the baby monitor that I had used for the previous couple of months, because there was no one sleeping in the living room anymore. In the morning, I walked out and looked at the empty hospital bed. Just stood and looked. And listened. No one was there. No sounds to be heard anywhere in the house.

The realities of life came crashing down on me later in the day when I received a call informing me that I needed to have the bed and the commode ready for pick up the following day.  She was hardly gone, and they were attempting to erase her memories !

Fast forward to this present day, and I am 70 years old, and preparing to embark on a wonderful adventure. I have been selling off most of my things, and my son is trying to get a mortgage to buy my house. With my Barbara gone in 2020, my younger brother gone in 2022, and my few close friends here in somewhat poor health, I realized that living alone is a poor life choice, especially when I have friends, and a particular " special " friend living in the Philippines. Financially, this is a great move for me.

In fact, I can't think of any reasons to stay. Of course, I will be taking my lovely memories of 38 years with the first woman ( other than my mom, ) with whom I was seriously in love with.

I am not just living day to day now, but living with an excitement I never expected to have again.  I firmly believe that Barbara would not have wanted me to be alone for the remainder of my years. She loved life, and she knew how much her presence made my life a pleasure.

This is not a replacement, but a succession.

Bholmes

I have not posted anything in a very long time on this site. Your questions kind of hinted at things I have thought about. I lost my wife after 10 years of battling EO Alzheimer's. She was just 66 when she died 2 + plus years ago. I was was 56, and I am almost 59 now. We had no children. We had each other for 23 years. Married almost 19. I give you the above as a kind of background because I think everyone grieves and thinks about this disease and their loved ones in their own way. What they have gone through or are going through. - there is no right way.

But I think back and for me, it is hard to get beyond the period of taking care of my wife. The disease as everyone knows is a progressive disease. "Yes" there are newer medicines but there is no cure. I watched a woman who had her own business, social life, and just being my friend turn into a person that became so dependent and toward the end so child like. It was a heartbreaking process that unfolded in slow motion. She was good and then slip farther, then be good and then slip even farther. I felt responsible for her well being and the disease is relentless. 

So what sticks for me - I wish so much that my wife was here, happy and healthy and with me. I miss her so much. But it is hard to remember when that was - when was she happy and healthy. Pictures help when times were so much better or video, but they also remind me of what a disease did to her and me....It robs you of so much. So for me, the disease seems to have altered how I perceive the past. I want to remember her laugh, but she stopped laughing.. her personality changed, she grew silent, sometimes angry, her speech became so I was about the only person who could understand what she wanted to her friends and family. I want to remember the sound of her laugh, but it was so long ago.. I really hate the disease and what it did.

I think my biggest shock has been the silence since she passed. I had a home with just her and me and I was lucky that for 8 years I worked at home to take care of her. My wife never fell or was violent so I was so lucky in so many ways. She never went to the hospital for anything for the last 8 years of her life. She was home with me 98 % of the time for over 8 years and then she was gone... I would say I felt "numb" beyond "numb". I didn't like physically being in the silent house after she died. I finally slept literally for 2 days in Las Vegas because I could not sleep in the house. After 15 months, I sold the house. So I think "change" is good if it is channeled right, sell the house, move West, Move East, sail to Tahiti.

so your last sentence - Is there something we caregivers might understand or do to better prepare for the final goodbye? 

I guess I wish someone would have told me, maybe not at the beginning but sometime toward the middle, that my wife would die of this disease. That she could go in any manner, long-suffering or quickly. This disease kills and there is no cure. No one told me this, yes she got sicker, but after 10 years of sicker, why not 11, or 12. My wife was walking and then stopped, then stopped eating, and then died within 7 days...The finality of her being gone to be perfectly honest almost killed me. My grief was bad, my appetite gone, alcohol too much...

What I think now after "surviving" is you just live the best you can. My Lydia would want that for me, but I still struggle because I haven't really figured out what that life is. I take a lot of photos as a hobby- birds, landscapes, animals and in that moment it helps as the process kind of stills my mind. I think this disease gave me a very long deep scar. I have hard time thinking now, hard to read, hard to "care" about things in general. It's not depression, it's finding purpose. My purpose was taking care of my wife and losing her not only caused great pain but a very large void. If I were a caregiver.. understand there will be that void as well as grief when losing someone. No one told me about that void in your life, no one.

Not sure where I will end up, but I am trying. I moved, I have hobbies. I reconnected with friends etc. Work is the hardest for me... I just don't care much about my job and am trying to get to 62 and then I am done with corporate America. I know the above was long but your questions kind of touched a nerve. Hope you find answers.

mommyandme (m&m)

Bholmes, Thank you!

Free thinker

Your thoughts resonated with me, having lost my first wife to early onset AD back in 2015. Despite the so-called "long goodbye" that is the disease over time, there's the actual and final goodbye that death enforces, and you describe that emptiness perfectly. I eventually made a trip to India, a place as far removed as I'd have imagined, because I knew that I needed to put myself somewhere that was entirely unfamiliar and that would give me new eyes. After that trip, I knew that I had to readjust the lens through which I'd been looking at the world, and at the life my late wife and I had lived together for forty-four years. In time I started to court another woman, someone we'd both known socially, and four years after my first wife's death I remarried. That coincided with my retirement from a stressful and all-consuming "day job" that, by the time I retired, had lost its charm, shall we say. Now, I have an ongoing creative practice as a visual artist, something that I've done professionally for fifty years now, and have re-engaged with writing. All this said, not a single day goes by that I don't think about Judy, and the life together that meant so much to me and still does. Those memories, though, are giving back to me pieces of her that enrich my days. I love my new life with my second wife, and know how fortunate I am to have another soul mate. Both loves enrich one another, I think, and my life is satisfying in so many ways. I urge you to take a risk or two, socially or professionally, to put yourself in some psychic space that will help you see yourself from a bit of a remove. It may help to clarify for you what you'd like your next chapter to look like. Your wife would want you to live the rest of your life as satisfyingly and as richly as you would have wanted her to live hers, had she survived you.

Joydean

Nowhere that is a very good question!  

Chrisp so glad to hear you are getting ready for a big adventure and your special friend. I have read many of your posts about your Barbara, so wishing happiness for you! 

Bholmes my heart hurts for you. Your pain comes through so raw. I thank you for opening up and sharing with us. You said “no one told me “ , truth is no one told any of us what this horrible disease would do to our loved ones and to us the spouses. I pray that you find peace and will be kind and gentle to yourself. Lydia is a beautiful name. Look for happiness, you deserve it. 

Free thinker thank you for sharing with us. So happy for you that you have found a second chance to love and be loved. Best wishes to you! 

Nowhere

Thanks to each of you for sharing your journey and responding to my questions. Shortly after placing my husband in memory care (during Covid) , I didn’t think Alzheimer’s had anything else to take from me, but I was wrong, because he found someone who his brain imprinted upon and he mistook her for me. The RN called to inform me that he was in a mutual loving relationship with another resident whom he called by my name. It felt like I’d been sucker punched. Later, after moving to a new facility it happened again. She has since passed and now he’s advanced to a place he cannot think or recall to reattach. I’m trying to prepare for its final blow, then I read it will never leave, so had wondered how best to be prepared and resilient. 

M&M- I’m sorry you’re struggling. A close mother/daughter bond is so joyful, and as much joy spent together, being without is proportionately that much more to bear. May in time memories of her be a comfort and turn your tears into smiles.

Chrisp- I love your succession analogy. No, your loving wife will never be replaced and yes, our hearts are expandable to accept another and continue loving. Wishing you much happiness moving forward.

Bholmes- my husband has had AD for sixteen years. He is still walking and talking. All his life when ill, he’d not lay in bed. I’m pretty sure he’ll skip that part ans he’s already described as being in late Alzheimers and he’ll just keep going until his last breath. When my husband was placed, the stillness was awful. It still is. Good for you for finding a hobby and reconnecting with friends. From your post I can hear you were an amazing caregiver to your wife. Perhaps your effort to carry on is your purpose for now? I kinda think Lydia would agree. 

Free Thinker- thank you for sharing your story. I see a theme on this strand for the need to physically move or get away from what was once, and start anew. It takes courage to let go, I think. Courage to move forward, even while wishing and missing who and what was. It’s beautiful the way in which you describe memories of your first wife “as giving back pieces of her” and how they enrich your present love. 

  

Mrs. O

I lost my DH to Lewey Body Dementia in late 2019, just before COVID. Then COVID hit. So many bizarre life changes. The hardest part for me was returning to the “good memories” like everyone advises. The last years were so traumatic that all I could think of was his suffering, and I had a hard time getting all the way back to the good times. Even when I dreamed of him, he was struggling in the dream, and I was always defending or protecting him. Then I had a breakthrough. After over a year, he entered my dream in his previous (healthy) state. He didn’t say anything, but he just stood there smiling, looking strong and healthy. Then he turned and walked away. I woke up happy, finally feeling that he was OK now. No more confusion or suffering. On that day, I began to move forward, and slowly let the light back into my life. To those of you still grieving hard, I can affirm that it doesn’t go away, but you learn to let other emotions sit beside that grief, and slowly grow so that you can enter life again. Always respect and honor your past, but don’t let it stop you from completing your own life journey and adventure.