Cerebral Amyloid Angiopathy and Death

Posted by sistertwo @sistertwo, Sep 28, 2019

To recap, my mom was diagnosed with CAA in 2008 when she was 71. When she was 77 she went into assisted living, moving three times. The first one was in her hometown, a small town where everyone knew her as a nurse and she felt she was taking care of them. The second one was near me and a big fancy facility with all the bells and whistles, but every time her dementia got worse she liked it less. The cost nearly doubled and they wanted to put her in the memory care wing, which we felt she didn't need quite then. Then I found an adult foster care home ran by a great family where there were just 5 residents. Once they had an opening, it was amazing how well she did there. No longer confined to one room, but she was a part of a family. They gave her the best care ever. They'd even take her out shopping! Their family became our family for one whole year. Of course, when I'd be there 2-3 times a week, we got to know one another very well. But, they gave me my own life back, because I didn't feel guilty when I wasn't with her anymore. She was in perfectly good hands!
During the past 6 months or so, she started having more small bleeds and then the past few months they were in the back of her head, affecting her more. Usually she needed some real good sleep for a few days and all would be back to her new normal. In May she was put on hospice. Mom never really knew she was going to die, because she had her wisdom teeth pulled 6 months earlier and couldn't get over the holes in the back of her mouth. I'd bring her to the dentist to assure her all was okay. When she had her appointment with her doctor to discuss hospice, she thought he was a dentist. I asked her if she understood what we were talking about and if she understood what hospice meant. Even though she was a nurse her whole life, she replied she understood everything, and that she would get used to the gaps in the back of her mouth and would be "good as new" after that. I guess there is something sweet about not knowing. That day when I dropped Mom and her caretaker off, she got real mad at me for not bringing her to her house (2 hours away). Her boyfriend (also a resident) and she would always talk about moving into either his house or hers and that day she really meant it! A week or two later she was doing better and there was talk of taking her off of hospice. In addition to doing better, apparently the insurance / medicare / whatever looks at CAA as a condition, not a life-threatening prognoses. Then she had some more "strokes" (reworded the orders) and it became obvious she was unlikely to get better. Some days she could walk. Some days she couldn't get out of bed. Some days she wanted to go shopping (we used a wheelchair), and some days she was really quite good. The last few days in July, although she wanted to get up, her brain couldn't tell her legs what to do anymore. Her three sisters all came to visit so John (her caretaker) carried her to the living room so they had more room. She enjoyed the reminiscing, but was virtually bedridden from then on. She would want to get up, but her brain was not able to tell her feet/legs how move. She fed herself some ice cream on July 31st, but she was so very weak and slept almost all the time. I asked her if she was ready to go see dad (he died in 2013). She could talk just enough to say, "Yes". I promised her I'd make sure she looked pretty for him. My sisters both came that day prepared to stay for weeks or however long it took. The following morning we held the phone next to her ear as each grandchild (10 of them) called to say their goodbyes. That night I checked her oxygen and pulse (little finger monitor) on and off all night, holding her hand from 3 am on. My sisters were talking, as I was still holding her hand, half sleeping, when she peacefully slept away at 7:47 A.M. on August 2nd. As I had promised, I put some lipstick on her before they took her away.
We watched our father suffer for 13 days from metastatic prostate cancer. My biggest regret with him was that we allowed Mom to control his meds and she refused to give him much (if any) morphine, claiming as a nurse it was her duty to keep him alive. Also, Mom didn't want people in her home and Dad could have and should have reaped the benefits of how great the hospice program really is. Not until he passed did we really understand how much her cognitive thinking was already off.
CAA is an interesting condition. The first year after Dad died, she managed to spend thousands of dollars on anything and everything. I think there are peddlers who prey on widows and when they came knocking, selling cleaning supplies, or removing trees, etc. she handed over big bucks. She also thought everyone was stealing from her. She misplaced everything and hid things in weird places. We'd have to take her Bose remote with us wherever we took her! We learned to keep her room as simple as possible. She constantly thought she needed new cell phones (never admitting it was operator errors). She was very good at masking her disability, talking mostly about things like the weather and other small talk. There is a lot of fabrication or denial that occurs with CAA patients. Later on she would repeat certain phrases that were etched in her memory making her come across as perfectly normal. She could fiddle for HOURS with jewelry, usually breaking it and then blaming someone else. There were times she was nasty, nasty. But, then a few hours later she would forget she was mad and all was good again. The biggest change we saw was that she went boy crazy. But, she met Dad when she was 16 and would rather been with virtually any man than by herself. What she wanted mostly from us girls was to take her and her latest boyfriend out to eat. Men liked her because she was beautiful, classy and witty. She was insistent she was going to marry each one of them and would gladly have turned everything (assets) over to any one of them. But, luckily her guy friends were good people and we would take them to concerts and out to eat with us.
We never sold the house that we grew up in, even though it was not lived in for 5 years. It gave Mom comfort knowing "when she got better, she could go home." There was no need to list the house with a realtor, as people have been wanting to buy it for years. By November it will be turned over to the new school superintendent and his children. Located right across from the city park & swimming pool, baseball/softball/football and track fields, it was the best place to grow up.
If anyone is still reading this long message, and either have CAA or a loved one with it, my advice is to embrace it. It is not a bad way to live and it is not at all a bad way to die. God bless you all.

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Hi @sistertwo thank you for sharing your story. How have you and your siblings been feeling since your mother passed?

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@ethanmcconkey

Hi @sistertwo thank you for sharing your story. How have you and your siblings been feeling since your mother passed?

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We have had meltdowns, but a lot of the times we have been too busy to dwell on much. Today was one of the meltdowns, as it was the last time the three of us will have been at our parent's house all together. We have spent our last night together sleeping there, laughing there and crying there. We were photographed waving goodbye to our home/neighborhood and the tears roll down my cheeks even writing about it. Two of us will return later this week to finish the last detailed cleaning and allow the new buyer to take earlier procession. We have worked very hard to get to this point. I don't know how Mom/Dad would feel about us 'giving' away their treasured processions, but we kept what we and/or their 10 grandchildren can use and gave away everything else, except the stair lift and 2 chair lifts (out of 4) which we haven't found homes for yet. Did I tell you Mom was a shopaholic? Dad let her get whatever she wanted (always) and she wanted a lot. Anyway, I think perhaps they would be okay that we chose to not $ell anything. I hope so.
Since Mom died, her youngest sister was diagnoses with stage 4 pancreatic cancer and the sister between the two of them is now in assisted living from worsening Alzheimer's. Since we are a close family this has been hard to accept. Mom would have been worried sick if she were still alive. We are so concerned for them and the 90 year old sister who lives alone. I can't imagine what she must be feeling. And, I'm certain we all secretly wonder what is hereditary and what is not. My older sister (62) was not a BRCA carrier, but discovered breast cancer in January. BTW, I am thankful I was able to tell her about this Mayo website and she has found it extremely helpful during her journey. THANK YOU!
Another thing we each give thanks to is that we have not had a single conflict/disagreement – about anything. Decisions about their house, farm, investments, belongings, etc. have all been made jointly and without any debates. Even our three husbands have worked magically together. We have so much to be thankful for.

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I doubt you still monitor this sight, but your description of your mom’s battle with CAA was incredibly enlightening and helpful. We got more from your article than any doctor or neurosurgeon has been able to provide. As my wife read your article she kept saying, “oh my gosh, OH MY GOSH!!” This woman is describing your mom. Needless to say, the similarities are uncanny. My mom is 88 and living with us. We knew about CAA but couldn’t quite get a grip on some of her odd idiosyncrasies. You have shedded some light for sure. Thank you.

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Why it took so long and so slow to find treatments and cure to CAA disease ?
Lack of money?
Old age disease! It ok for them to die? Who care?
Or what is the reason?
Where to get the best care for this CAA disease ?
A hopeless person with CAA disease.

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What a beautiful end-of-life story! You and your sisters are truly remarkable people to have the insight to be so caring and supportive to your wonderful mom throughout those last years! Thank you for sharing and giving the rest of us insight and guidance on how to navigate this disease and potentially perilous time!

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@leslie47

What a beautiful end-of-life story! You and your sisters are truly remarkable people to have the insight to be so caring and supportive to your wonderful mom throughout those last years! Thank you for sharing and giving the rest of us insight and guidance on how to navigate this disease and potentially perilous time!

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I honestly don't even know what to say. I guess I can say that my sisters and I have been grateful that Mom passed before Covid took over everything and people died all alone. We are soon going to gather at the park we grew up across from and dedicate a bench we donated to the local park. It will be nice.
But, as I am also dealing with a situation where just today I had a person come to my house for me to consider hiring to help me "declutter." You see, as I had plenty of my own "stuff", but after my mom passed away there were certain things that I wanted to keep and soon my lower level became a place where I kept her (and Dad's) belonging in. Call it separation anxiety or whatever. My mom was a shopaholic and I have some of those same tendencies. Luckily the person that came said I was far from a hoarder and my "stuff" was clean and organized, verses what she often sees. I guess I can part with what has sat down there for almost three years and enrich other's people's lives a bit, too.
I am so afraid of having CAA happen to me that every night I take an "my mom's name" pill, which is a baby aspirin in hopes my demise is not the same as hers. My mind has never been great, but it is the best asset I have.
I am so sorry to everyone that has it, but do know that it is not the end of the world for people who do get it. Maybe it is the lesser of some of the evils. My dad died a very painful cancer death – there is probably no worse way to leave earth. He was practically a saint and the way he left still breaks my heart. CAA is not overly painful. People understand it is not you that react the way you do. And, your loved ones will always love you. But, as you go through whatever CAA brings you – Dance! Do puzzles! Visit with loved ones! Travel! Throw a party! Go beyond your comfort zone! Live for today! There is not a single person out there that knows what tomorrow might bring.
Two weeks ago I was with my husband at Mayo while he was tested for Agent Orange/COPD/lung issues. I talked to him tonight about having a neighborhood luncheon and calling it a "Just Because" gathering. God is great.

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@globemasteriii

I doubt you still monitor this sight, but your description of your mom’s battle with CAA was incredibly enlightening and helpful. We got more from your article than any doctor or neurosurgeon has been able to provide. As my wife read your article she kept saying, “oh my gosh, OH MY GOSH!!” This woman is describing your mom. Needless to say, the similarities are uncanny. My mom is 88 and living with us. We knew about CAA but couldn’t quite get a grip on some of her odd idiosyncrasies. You have shedded some light for sure. Thank you.

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How is your MIL doing now? Bless your heart for taking her in.

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@caroline1925

Why it took so long and so slow to find treatments and cure to CAA disease ?
Lack of money?
Old age disease! It ok for them to die? Who care?
Or what is the reason?
Where to get the best care for this CAA disease ?
A hopeless person with CAA disease.

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caroline1925, I do not know the situation you are in, but I don't think money has anything to do with this illness or lack of treatment. From what I understood, it was not typically diagnosed until after death and their brains are tested. Science continues to expand all the time and we all learn as we go, which includes the best of the best of doctors and scientists. The reason is still (likely) debated, as is the best care for you or your loved one. I wish I had answers for you. Please write again explaining more and hopefully someone can give you some assistance. You are not alone.

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This is one of the most beautiful eulogy's I've every read. It's real, it raw, it's beautiful. It's said. It flowed. It left me bearing your pain, which is the best part of grieving well. I hope by now you have less grief. One thing was very clear, you loved your Mom. There is absolutely not doubt about that. She was so blessed to have had a child like you. What a blessing.

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@thenazareneshul

This is one of the most beautiful eulogy's I've every read. It's real, it raw, it's beautiful. It's said. It flowed. It left me bearing your pain, which is the best part of grieving well. I hope by now you have less grief. One thing was very clear, you loved your Mom. There is absolutely not doubt about that. She was so blessed to have had a child like you. What a blessing.

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Bless your heart. Thank you. I pray you are doing well.

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