Heavy heart

Call me Gram · February 6

We switched neurologists in December. The last one told DH his symptoms and blood work, along with his CT scan and MRI, indicate normal aging. So no PET scan warranted, or further testing for that matter, just come back in 6 months. DH and I did not believe that assessment. At 68 years old, it is not normal to feel lost in your own neighborhood, where we've lived for decades. So, we found a memory clinic at a reputable university. It has been like night and day since we switched.

The university makes DH's test images available online. The atrophy of his hippocampus in the MRI is clear, and the PET scan images are shocking, when compared to a "normal" scan. My heart breaks for him. I don't want to seem heartless to those of you who have loved ones w/dementia who refuse to see the reality of their disease, but a little anosognosia would do my DH some good right now.

Full disclosure, I do see anosognosia in him occasionally, when he tries to do things that he can't really manage safely anymore. But, to see him look at and be shocked by his results is heartbreaking. I would rather hide it from him and fib to him about his circumstances at this point. But, the reasoning center of his brain is still working for the most part, and he wants to know the reality of his situation.

Alzheimer's is not a surprise to us at this point, but the visual deterioration that is clear in his results is hard to swallow. I want to comfort him and convince him there is still time to find joy in life. He is not done yet. But, my heart weeps for him and what the future will bring. God bless all of you who are care partners right now. It is a heartbreaking journey.

annie51 · February 6

So glad you found the answers you needed, but so sorry for both of you for what you found out. I can understand the mixed feelings you’re having, but there IS time to find joy and much that you can do while he still can. Find what makes you both happy and do as much of it as you can - be it traveling, spending time with family or friends, whatever brings you joy. I wished I had done more of this with my DH before we were unable to continue. We’re here when you need us!

wose · February 6

How awful for you. I’m so sorry. All of this freaking illness is pure hell. My DH tells me everday how lucky he is to not have any medical problems at his age. So that part really is a blessing for him, which is good. But the downside is he blames me for all the missteps. I keep thinking we could still have fun but the anosognosia puts a halt to that. In your case, I would try to plan as much as he’s willing to do. It still could be a very slow decline like ours is. Some others suggested taking videos of your happy times for reflection. My DH was surely showing signs at 70 and I’m so glad we traveled when we did. He wasn’t a traveler or fun time person so that part makes me happy that I was able to fulfill some of the things he always wanted to do. Now it’s hit or miss. There’s just no way around the sadness and heartbreak. I try so hard to cherish the good moments. God Bless you and look after you and DH.

Call me Gram · February 6

https://alzconnected.org/discussion/comment/265440#Comment_265440

You're so kind, Wose. Thank you! I think often about what you are going through. ❤️ All my best to you.

Call me Gram · February 6

https://alzconnected.org/discussion/comment/265433#Comment_265433

Thank you! 💕

SDianeL · February 7

Glad you have answers but sorry for the results. It is terrifying and heartbreaking. We’re here for you. Hugs. 💜

Biggles · February 7

Well said Worse!! this disease is hell on earth there is nothing good about it. It has taken time, a lovely understanding Psychologist, this wonderful site of knowledgeable people, buckets of tears, pain and finally acceptance before I could move on with our life. The medical field have not been particularly helpful. I have totally changed everything we do and everyone we mix with. It's taken so much determination to replace our past life. We start the day not with the news on the radio but with music that suits, we have breakfast every day outside on the back deck surrounded by our garden we have specially created to attract the birds and our puppy, newly acquired as an emotional care puppy for me. Restaurants are out so we do takeaway at the beach or a carefully chosen park. We go to the local live theatre during the day, it's easier than at night, and I always get seats near an exit just in case.

I think its a case of adapt while you can and forge out the kindest happiest life that you can figure out, again while you can. I still cry deeply and silently particularly when I'm tired looking at the man I have loved so much for 54 years, crumbling before my very eyes. We are all in this together and understand only too well.

White Crane · February 7

Dear Gram, my heart breaks right along with yours at the realization that his brain is deteriorating. To see it must have been like a gut punch. Alzheimer's is so heartbreaking. I have watched my DH go from a confident and intelligent man to a ghost of his former self who can usually only talk in word salad. I'm so sorry your are having to go through this.

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