To Fight or Not To Fight?

murpc76

First post and so much swirling around in my head. Some background:

DH is 14 years older than me. As far back as 2018, there were instances where I knew something was “off”. Everyone, including his PCP and close friends, just chalked it off to getting older. The pandemic and getting lyme’s disease exacerbated cognitive symptoms. This led to others being concerned and had enough evidence to share w/his new PCP who gave a Neuro referral. 

The neuro workup was done, PET scan done (showed areas of poor glucose uptake) Nov. 2022, called it MCI, prescribed Donepezil. 

Combination of lifestyle adjustments and the new medication helped for about a month and a half. After returning from a trip abroad, I found out that he had difficulty texting and was embarrassed to ask for help. What little hope/light I had seen in the previous month vanished.

In June, a neuropsychological eval was done and showed how much he was truly struggling. Observing the clock test and how difficult it was for him broke my heart. His excuse was, “I’m retired and don’t wear a watch anymore, I just look at my phone.” This past Aug. the neurologist reviewed the neuropsych eval and used the term Alzheimer’s for the first time. She said the best option for us now would be Leqembi. An appt. Was made…for Aug. 2024, and that was just for the consult and to see if he was a candiate. Since then, things have been progressing. It always seems like things speed up once you get a diagnosis.

At this point, family and friends have consistently offered information, tips, medical trials info, try this, fight the insurance company to cover leqembi, etc. I/we have accepted the hand that’s been dealt.  Since the spring, I would put him at around stage 4. He spends 80% of his day in the recliner playing games on ipad or using the coloring book app.

I am at a loss as to how to deal/handle “helpful advice”. I’ve gotten better at just simply saying, “Thanks, I’ll check it out.” It makes me feel like I’ve given up, or not fighting hard enough for him. Knowing what the end result of this disease is, it is difficult to make the decision for pushing/fighting to get leqembi expedited. Especially after reading an article that basically said it only  delays progression by a few months, plus possible side effects like brain bleeding and swelling. It would also entail travelling 3 hours away every 2 weeks to have the medication administered. How have you handled others’ input and treatment options? He is not angry, or agitated. The joyful person he was is fading away. I don’t want him to feel pain of any sort and at the same time, I don’t want to drag out the inevitable. 

CindyBum

For what it's worth, my DW's neurologist told us in that she felt like it was a drug with significant side effects with limited impact. She did not recommend it at all.

I want to honor the decision you two have made. You are the right ones to make it.

M1

Welcome to the forum, you have come to a good place for support. I wouldn't hold my breath for the Lequembi to do much. If it's going to help, it's probably going to be much earlier than stage 4- and that's the catch-22, not to even mention the difficulties of travel and administration.

These relatively early days are the time to make sure your legal ducks are in a row, that you have a financial plan for long-term care, and for bucket lists. My partner and I took a wonderful 25th anniversary trip when she was stage 4 and also attended her 60th high school reunion, both of which were very memorable and are precious to me now.

I'm sorry you are facing this.

Davegrant

Murpc 76,

Welcome to the forum. I will give you my comments on how to handle advice. I started in 2017 with my wife's diagnosis of MCI (mild cognitive impairment) I left her doctor's office not having a clue to what was going to happen next. I went to my computer and started looking up sites but to make a long story short I ended up on the ALZconnected and a number of other places that were discussing dementia issues. Some of my early findings were to take this a day at a time, read and learn. So, I did that. I came to believe that the people who were caregivers had the most relevant experiences, so I read and followed the advice that made sense to me at the time. I don't think I understood fully but I went one day at a time usually dealing with what I found in front of me related to my wife. I bought the book, The 36-hour day and read it and used it as a reference book as problems arose. My wife also has Anosognosia, so she is not aware of any of this. During this time, I was struggling with my emotions, wondering if what I was experiencing was even real, I had a hard time wondering if this all was a part of our marriage or indeed a disease. I couldn't separate it. It took me a long time.

I joined a local support group and that helped me a lot to get stuff out of my head and helped me realize that I was not alone. Other advice that I followed was to take care of myself and at first, I didn't understand that, but it came to mean to me, to take some time to get away for a few hours. And, even though my wife fought it when I left and when I returned, I kept on taking four-hours a week respite and every time I came back refreshed, even though I didn't do much. Since I needed to be with her 24/7 I had to find a person to be with her when I was gone. I had family members such as DIL and adult grandchildren who could handle the situation. I would typical welcome the sub, brief her and go to my car, get in and scream, then I would go to MacDonalds parking lot and order a coke and just sit there for an hour or so and after a while I would go to the library or grocery shopping or my own medical and dental appointment or local resources that assist caregivers.

It has now been seven years and I pretty much am in the same position dealing with Alzheimer's one day at a time, one problem at a time. I would like to say that I have gotten stronger, but her resistance has lessened as her disease has progressed. Also, I learned better ways to present information to her. So, indeed she may not have changes as much as I have.

Dave

Denise1847

I think we all fight in the beginning. Even though we read that it is incurable and progressive. Perhaps our reactions are part of the grieve process we begin when we hear the diagnosis. I started out that way and then came to realize that our time was better spent having joyful experiences. I found that creating a peaceful and consistent environment was better for us. Like anything else, one must weigh the costs versus benefits of the time spent and impact on your spouse and you.

Anna2022

@murpc76

Welcome to the site! I've found the lived experiences and suggestions posted here to be spot-on and super helpful. And the participants are so very kind and supportive!

In my experience, family and friends, unless they have direct experience with the dementias, are well-meaning with their advice but their advise is usually useless and usually annoys me. I try to say "thank you" for their concern and support and leave it at that. I've found that the more emotionally sophisticated friends/family eventually get it and start asking how they can help rather than offer unsolicited advice. Others just continue to be tone deaf. I've found that people show up as themselves in these situations and that I just have to let them be themselves. I observe and let them show me how they operate. I try not to judge.

The reality is that there is no cure for this yet. I have hope that the first person to be cured of this disease is out there - It just won't be my DH. That has been a bitter realization. I have started talk therapy (via zoom) to help me deal with the emotions that surface as we move forward on this journey. I used to talk things out with my DH but those days are gone.

Your story so far is a lot like mine and my DH. He refused initial testing for the first two years, then I finally got him evaluated, with MOCA and a MRI. Doc says MCI and offered medication but DH refused (as he has anosognosia and blames his memory/cognition issues on "I just have a 'I don't care' attitude" or I just don't give a sh**). The doc most recently was offering leqembi but our insurance won't pay for the specialized AMYLOID PETScan necessary to qualify. No matter, there is no way I could get DH to show/ agree to show for the appointments and labs necessary for the administration of this drug - every visit would be another struggle or argument. Plus, for us, the side-effects outweigh any possible help. We are still going forward with a PETScan FDG to help with a diagnosis - the insurance company will help pay for that. In the final analysis, we do the best we can in our particular situation. And that is good enough.

Keep posting - you never know who will benefit from your willingness to share your lived experience!

murpc76

Thank you all for taking the time to comment and share your experiences. I realize that it’s all very much a day/moment at a time. On one hand, I feel fortunate that he is calm, aware of the diagnosis, and that I have the ability to approach care in a matter of fact manner - I credit this to time spent working in an in-patient rehab. I’ve found that if I remain on task, it’s easier on me. Then when needed, I let the emotions flow. I know I will be ok. We have a small, but great community and know that there are many I can turn to for respite when the time comes. What I mostly feel is sadness when I pause and I see a good, kind human fade away. I then pick myself up and focus on making sure he is safe and feels loved.

Beachfan

".......What I mostly feel is sadness when I pause and I see a good, kind human fade away. I then pick myself up and focus on making sure he is safe and feels loved. ...."

Welcome, murpc76, and I, too, am sorry you have joined this group. Your words struck my heart. My DH has passed after 11 1/2 years at home with me and then 17 months in a MCF. The journey was always one day at a time, one moment at a time, figure this out, face this challenge, solve this problem. I was so busy caregiving that looking back, the years actually flew by, but the constant was always the fading, the sadness, the inevitable. The sadness lingers still, especially in these days of early darkness and cold, with festivities on the horizon. Keep your optimistic outlook, stay busy and focused, make some memories and you will be okay. It will get better, I promise. Stay strong.