Our Story

David J

I originally wrote this in response to another post, but decided it might warrant a new topic. 

My wife was “asked” to retire in 2007, at 52 years old.  She was a civil litigation attorney, working of counsel for our good friend after resigning her partnership in another firm. Looking back, many of her problems with the previous firm were probably because of her illness. 

What followed were 10 years of steadily decreasing cognitive ability, personality change, physical and mental health issues. We have no children, and she has no immediate family, so we were on our own. At first, she could cover her symptoms and seem completely normal to friends and relatives who didn’t see her often. Some thought I was being mean and hurtful to her, making up stories or just making too much of it. We had diagnoses of Parkinsons, Alzheimer’s, Cerebellar Spinal Ataxia, Essential Tremor with Mild Cognitive Impairment, and more. Each Neurologist who saw her aid that the previous ones were wrong. Every time she had an MRI or Catscan, or participated in a study, it seemed to eliminate a cause while the symptoms got worse. It was a few years before one of them diagnosed Dementia. I know I am mixing symptoms and diseases in my narrative, but at the time we were just looking for answers and a name to call whatever was going on. When I retired in 2017, we still had no definitive diagnosis. That came in 2020 as Alzheimer’s from the neurologist who ran some of the studies. He said that he had observed her over several years and that by observation he was diagnosing Alzheimer’s. 

I was her 24/7 caregiver at home for 5-1/2 years. As she got worse, we went through hallucinations, delusions, paranoia, as well as severe memory loss and confusion. We went through some typical stuff, like wanting to visit people who are dead, to being convinced someone was trying to kill her. Eventually, she was incontinent, wandered, and needed help with all activities of daily living. It was no longer possible for me to bring her on errands, go out to lunch, or any other activities outside the house. She didn’t know me anymore, but seemed to know we were together. I had hired caregivers 6-8 hours per week, but she didn’t like any of them, and I found that I worried about her all the time I was out of the house. The last year she was at home was so terrible that I finally made up my mind that she needed more than I could give. I had been researching MCFs for several months, knowing that a change was inevitable. I had been putting off minor surgery, so I got that scheduled and arranged for my wife to have respite stay at my choice of MCF.  I figured if it worked out, she could stay there after I recovered from my surgery. She went in on September 9, 2021, and it seemed to work for both of us, so I made it permanent. 

The next several months were almost as hard as the previous year: ER visits, medication changes, steady weight loss, falling, severe anxiety, seizures, more med changes, etc. It seemed like there was a crisis every week or two. The only good thing was that when things got bad, I could usually go home and let someone else handle it. After several months, things started to settle, and I was able to relax a little. Trying to get back to some semblance of a normal life, I scheduled two out of state trips this last summer. My wife’s behaviors seemed to be stable, and there had been no medical emergencies or medication changes in several weeks.  The first trip went fine, I had a great time, and when I got back there had been no emergencies or big changes in my wife’s condition. The only thing was continued weight loss.  I decided  to go ahead with my second trip.

At the end of August while out of state, I got a call that she was dying.  I drove back and spent the next 3 days in her room until she was gone. Her death was not unexpected, but still very hard, of course. It’s been over two months, and I am trying to get my life back in order. On this forum, I learned this is “Stage 8” of this terrible disease. I have a feeling that it will last as long as all the other stages put together.

Thanks for listening. 

David J

French

Thank you David, it is always interesting to read stories.

Ed1937

David, I'm sorry it is so hard. My wife died unexpectedly almost 5 months ago. I visit her grave site at least twice a week, and I talk to her when I go. When I go to bed, I'm thinking about her. When I wake up, I'm thinking about her. She was sixteen when I met her, and we've been together since. I have no idea how long the grieving will last, but I know I was unbelievably lucky to have had her in my life to grow old with. Thanks for sharing your story.

M1

David, I also like seeing the complete story in one place.  I was telling my partner's favorite aide today how much I wish she could have known my partner in her prime.  I hope, every day, after this ordeal is over for both of us, that I can hang on to what a spectacular, extraordinary woman she was, and not have all the good things swamped by this long, slow, difficult decline.

I hope you are making progress in your own recovery.  The rhythm of the days is surely different.  Sending you good wishes.

Jeff86

Thank you, David, for re-sharing your AD journey.  It’s very poignant, and I grieve for you.  I hope you are beginning to heal from the traumatic stress that is a caregiver’s lot.

JulieB46

Hi David, my DH was “asked” to retire as a high school principal in 2016.  He was diagnosed with MCI in 2014, due to my requesting he be evaluated.  He was my house husband while I continued to work for a few years.  His diagnosis went from unspecified dementia, to early onset Alzheimer’s and possibly a dual diagnosis of Lewy body dementia. He now has care givers every  day for 4 hours and I’m still working as a high school counselor.  I could retire, but I don’t want to live this 24/7.  He has delusions and hallucinations. He calls me bitch and worse.  I do everything at our home and property because he has no abilities to do things around the house, and really no ADLs, He is starting to be incontinent. I am on a few MC waiting lists, but no openings yet, and not sure how I can afford $6500 a month. He is very strong and often grabs me and pushes me with a look on his eyes that is not who my husband was.  I am a planner and I cannot plan my life.  How do we plan our future when we have no idea what the next few hours bring?

elainechem

David, 

I'm very sorry for your loss. My hubby died at age 65 in February of 2020 from Alzheimer’s disease. He was forced to retire at the age of 59 because he couldn't do his job anymore. I was able to keep him at home because he was still physically very strong and never became incontinent. He was ill for 8 1/2 years. It was the hardest job that I have ever had. I'm still trying to figure out what a "normal" life is supposed to look like.  

Last Dance

 I'm sorry to tell you this but I don't know if stage 8 ever really ends, my wife has been gone 5 1/2 years now and while the pain is mostly gone, I miss her dearly there's not a day that goes by I don't think about her or talk to her. Some days the memory of her struggles at the end haunt me and some of my failures as a caregiver haunt me, I doubt if I will ever get over those feelings, although I will admit they're not as bad now as it were a couple years ago. I think part of my feelings are the fact that my wife and I work side by side for 38 years in a business that we ran together and then four years after that in another business that we had, so she just wasn't my wife and the mother of our children she was also my business partner, my friend, Lover, and soul mate.  God’s Blessing to you as you start a new life without her Richard

Dio

Thank you for sharing your story. May you find peace after grieving and start to take care of yourself.

Pat6177

David, I’m sorry for your loss. Thank you for sharing your story. I’ve read many of your posts but didn’t have an appreciation for your whole journey. It was good to read it.

Joe C.

David, Thank you for sharing your story. I hope you may find some peace going forward.

toolbeltexpert

David thanks for sharing your journey, I pray for your peace as you continue.

Stewart 

Davegrant

Sorry for your loss. Thanks for sharing your story.