Cerebral amyloid angiopathy

I hope your journey goes as good as ours did. Please know you are in our prayers.

She really liked and respected him. Throughout the years, even if he hadn't seen her for awhile, he consulted with our local doctors when we had setback. When she was being a bit impossible, we were able to say, "Remember what Dr Rabinstein said?" Sometimes I would use some of his same questions to monitor her condition.
There are people who enjoy things like puzzles and games, which help keep the mind occupied. My mom was not one of them. She was a retired nurse and enjoyed visiting with her peers (once we got her to the right facility) and she always loved dancing, even if only with her hands near the end. She claimed to have been able to feel when she had more bleeds and her balance would go way off. Having her get a lot of sleep was extremely important. We could see a huge comeback.
We feel very blessed that unlike a lot of (dementia related illness) patients, she actually got nicer and more loving, and we still thank God that she always knew who we were. Her mind was actually quite brilliant in many ways throughout her entire illness.

Thank you for your kind words. My wife's biggest issue at this point centers around her extreme tiredness. She would sleep 24 hours a day if it were not for me encouraging her to get up and do some things. Her cognitive issues do not prevent her from doing lots of things but her energy level makes it hard for her to get going. This "safer at home" era has not worked in our favor. She was quite active until our current situation. We love music performances and have been active in religious activities. Those have been curtailed. We do spend time no watching virtual religious services, but instead of having to get dressed, go out, go to services, and then perhaps have a bite to eat, we now watch for an hour and are done. She really benefits from social interaction, but that just isn't happening very much now. This too shall pass, or at least we do hope so. Thanks for taking the time to respond to my post.

If she wants to sleep, I suggest you allow her to do so. Mom's doctor said that rest from the bleeds is the best medicine there is. Only when she is better, should she be encouraged to strengthen her brain (read, games, etc). When Mom would have her bleeds, I would bring her to my house and she slept on the bed in my office nearly all day (getting up for bathroom and nourishment only). It would usually take 3-5 days before she would be interested in being up a few hours at a time. Your wife needs her rest more than anything right now. She will get better.

Thank you for your reassurance about the sleeping issue. I hope you are correct about rest having some restorative effect. I will try to be more understanding of her needs in that regard.

Hi I’m 40. My Father is 71 and was just recently diagnosed. His mother & both of his sisters had early onset Alzheimer’s. With that being said, my father who has suffered from migraines all of his adult life Had a migraine the beginning of June and laid down and when my stepmom checked on him he was disoriented they took him to the hospital and then transferred him to another hospital and they found out he had a brain bleed and this led to a stroke a And he has a shunt and he’s had a drain placed in. between several hospital stays and rehab facilities and back in the hospital this week... they can’t control his HR for very long... and he has Pneumonia again. we just found out that this is what the doctor is saying in the specialist and the neurologist that he has. During this time over the last month my dad has had three more brain bleeds that they know of countless scans and tests he also has a heart condition I believe a fib because he has a very high heart rate that’s some thing that has happened in the last 10 years that he’s taking medication for. This has been a awful situation for my stepmom and just figuring overwhelming for me. I’ve had severe migraines over the last 20 years and basically nothing works. This is all very new to me I know nothing about this I just heard about this disease literally yesterday with my stepmom called me to tell me. I watched his mother which was my grandmother live with us as a small child with Alzheimer’s and both of his sisters which are my aunts and they all had Alzheimer’s early onset. So I’ve kind of been pretty well educated as far as Alzheimer’s but not this and I’m wondering about the hereditary factor for myself and my brother and obviously each of us have children as well. I wanna be proactive and I want to be understanding. My dad has deterioratedAnd he can barely communicate it’s been awful and my heart breaks for him he’s so disoriented and confused when he does speak he makes no sense this is by far the hardest thing I’ve ever gone through and I just want to help and I want to support them and I want to have a better understanding. Does anyone have any information on a possible outcome or testing? I’ve been driving several days a week 2 1/2 hours away to stay with my stepmom when I can and visit my dad but due to Covid there’s been so many restrictions. This is just really overwhelming for us and any help or information anyone may have I would really greatly appreciate it. The doctor has said that my dad will not improve if he was going to improve it would’ve happened by now. I am a Christian and I’m a firm believer in my faith and I just pray for the best for my dad but watching him like this is so hard. Again I’d appreciate any information or suggestions anyone may have thank you.

Hi @nicolehf and welcome to Mayo Clinic Connect.

Even reading your message, I can feel how your mind is racing with the news of your father's diagnosis of cerebral amyloid angiopathy. I'm confident fellow members like @jamestitus @sistertwo @bortner @coloradogirl and others will support you and share their experiences with CAA.

Nicole, your concern is three-fold:
1. What is going to happen to my dad?
2. How do I support my step-mom?
3. What does this mean for me and my future?

Let me start by addressing the third part. You might be interested in reading this:
- Hereditary cerebral amyloid angiopathy https://ghr.nlm.nih.gov/condition/hereditary-cerebral-amyloid-angiopathy

Have you considered genetic testing?

I was diagnosed with amyloid angiopathy in 2019. I am 68. I have had many brain issues-tias, meningioma etc but now with the bleeding they diagnosed this. I am on a blood thinner-coumadin-which makes the bleeding worse but cannot come off of it because of heart surgery. My doc said even though there is nothing they can do except watch it, don't let it ruin my life

Thank you for your response. I appreciate you
Taking the time, and I respect your strength to not let it ruin your life. It’s with both sadness and relief that I share my Daddy did not make it. Too many complications the last 2 months and he was sent from facility to emergency room, officially moved to hospice the night of Aug 4th @ the Hospital. I arrived that night- 2 hr Drive and sat with my step mom and brother, thru the night. He never regained consciousness, they gave him morphine for pain. The following evening we sat with my Dad as he took his final breath. I’m heartbroken but I know he is at peace in heaven now. I pray you have continued time and enjoy every second that you have. Life is short... we are devastated. I’m staying with my stepmom again this week for continued support. I’m struggling but my Church (which is also my employer ) is supporting me. I have not returned to work. I want to stay proactive on the health aspects. I am worried some because I have migraines like my Dad did. But I realize I can’t live in fear. Is there a screening for the amyloid angiopathy? Is that possible? I’ve done some research with its link to dementia and Alzheimer’s- my Dad was the same age as both his older sisters when they passed from Alzheimer’s/ Early on set dementia. I’m aware though that God is in control when it comes down to it. But the reality of the migraines scares me some, they had them too... just not like my Dad. Unfortunately they said when he initially went in for the bleed- it had been going on for so long and then with the additional bleeds the last couple months it was severe damage that was not only irreversible but too much for him to recover from.
He was on blood thinner too due to heart condition but the continued brain bleeds just proved too much and he was struggling to breath at the end. My Dad was 71, he was a Good Man. He was loved greatly and is missed very much... He lived a full life.
Blessings to you!

@nicolehf, I'm so sorry to hear about your Dad and your loss.

I can understand your concerns about the hereditary nature of dementia and cerebral amyloid angiopathy. Sometimes there is a genetic risk factor, but not in all cases. As you said, you can't live in fear, but you can equip yourself with knowledge. It is possible to find out your Dad's exact diagnosis? If you knew that there is a genetic risk factor, would you live your life differently?