Cerebral Amyloid Angiopathy

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Sirenofthespring
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Cerebral Amyloid Angiopathy

Post by Sirenofthespring »

Hi,

My mom unfortunately had a severe hemorrhagic stroke and was diagnosed with cerebral amyloid angiopathy about a year and a half ago. It left her completely disabled and with dementia overnight. 😢 CAA is similar to Alzheimer’s disease but the plaques prefer the brain blood vessels. Apoe4 is a risk factor. She is Apoe3/4 heterozygous. She was extremely healthy at age 69, worked out daily (Peloton), did sauna, did intermittent fasting and ate extremely clean. However she was under quite a bit of stress due to being a caregiver for my father and often slept poorly. She also had her ovaries removed quite young at age 50. She worked shifts for 7 years in her 40s. I am Apoe2/Apoe4 heterozygous. I read that this genotype is even higher risk for CAA than Apoe3/Apoe4 and I’m pretty worried about an even earlier onset. Prior to her stroke, she noted some word finding difficulty but attributed it to stress. Her father died of colon cancer at 70 and he was the Apoe4 carrier (grandmother was tested- died of broken hip at 95). Given that my mom took such good care of her health, except for the extenuating circumstances of being a caregiver during Covid, what can I do? Could her ovaries being removed have played a role? I should also mention her stroke happened 4 days after her Moderna vaccine and I suspect an immunological component. Any other Apoe2/Apoe4 heterozygous folks here? Are you aware of the CAA risk?
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Re: Cerebral Amyloid Angiopathy

Post by Theresa.J »

Sirenofthespring wrote: Fri May 20, 2022 8:28 pm Hi,

My mom unfortunately had a severe hemorrhagic stroke and was diagnosed with cerebral amyloid angiopathy about a year and a half ago. It left her completely disabled and with dementia overnight. 😢 CAA is similar to Alzheimer’s disease but the plaques prefer the brain blood vessels. Apoe4 is a risk factor. She is Apoe3/4 heterozygous. She was extremely healthy at age 69, worked out daily (Peloton), did sauna, did intermittent fasting and ate extremely clean. However she was under quite a bit of stress due to being a caregiver for my father and often slept poorly. She also had her ovaries removed quite young at age 50. She worked shifts for 7 years in her 40s. I am Apoe2/Apoe4 heterozygous. I read that this genotype is even higher risk for CAA than Apoe3/Apoe4 and I’m pretty worried about an even earlier onset. Prior to her stroke, she noted some word finding difficulty but attributed it to stress. Her father died of colon cancer at 70 and he was the Apoe4 carrier (grandmother was tested- died of broken hip at 95). Given that my mom took such good care of her health, except for the extenuating circumstances of being a caregiver during Covid, what can I do? Could her ovaries being removed have played a role? I should also mention her stroke happened 4 days after her Moderna vaccine and I suspect an immunological component. Any other Apoe2/Apoe4 heterozygous folks here? Are you aware of the CAA risk?
Welcome to the site, Sirenofthespring -

I'm so glad you found us! You have been through a lot these past two years. My heart goes out to you. Your worry about your risk of dementia is very understandable, especially given what you've witnessed with your mother. It takes a lot of bravery to share your story and certainly a lot of determination to reach out in search of more information regarding your risk of CAA and possible prevention strategies. The most important thing to remember at this point is that your genes are not your destiny. There are many things that one can do to enhance one's health and lower the risk of cognitive impairment in the future. You're desire to become more informed and to be proactive is the best place to start.

Others who may be more knowledgeable about ApoE2/ApoE4 status and its relationship to CAA risk will likely respond to your post. Meanwhile, there is a wealth of information on this site that may be useful to you. As a Welcome Intern on the Support Team, I can share several tools/resources to help you get the most out of your experience here:

First, if would like to learn more about ApoE4, the Primer is a detailed and informative resource written by a practicing M.D. with ApoE4/4. It contains information about the biochemistry of the ApoE4 gene and offers a variety of research-based prevention strategies, including advice on diet, exercise, sleep and managing stress.

In addition, the How to Guide offers tips on how to navigate forums and respond to posts, including how to quote members so they get an email notification of your post (use the quotation icon in the upper right of any post when replying to a post). The guide also demonstrates how to use the Search function for topics, and how to subscribe to topics of interest in the forums. If you put "CAA" in the Search box at the top of the page, it will bring up a number of posts that reference cerebral amyloid angiopathy.

Finally, if you would like to learn more about other community members' experiences, you can take a look at Our Stories.

I hope you find these tools useful as you navigate the site. Please don't hesitate to reach out if you need any assistance! We are glad that you are here.

Warmly,
Theresa
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Re: Cerebral Amyloid Angiopathy

Post by NF52 »

Sirenofthespring wrote: Fri May 20, 2022 8:28 pm My mom unfortunately had a severe hemorrhagic stroke and was diagnosed with cerebral amyloid angiopathy about a year and a half ago. It left her completely disabled and with dementia overnight. 😢 CAA is similar to Alzheimer’s disease but the plaques prefer the brain blood vessels. Apoe4 is a risk factor. She is Apoe3/4 heterozygous... I am Apoe2/Apoe4 heterozygous. I read that this genotype is even higher risk for CAA than Apoe3/Apoe4 and I’m pretty worried about an even earlier onset... Could her ovaries being removed have played a role? I should also mention her stroke happened 4 days after her Moderna vaccine and I suspect an immunological component. Any other Apoe2/Apoe4 heterozygous folks here? Are you aware of the CAA risk?
A warm welcome and a virtual hug from someone who is very close to your mother in age. I can imagine how much confusion, sadness and even anger you must feel at her devastating stroke. As her genetic "cousin" and the mom of a daughter, I'm sure she would have done anything to spare you this sorrow and worry about your own future. I hope that her physical disabilities (assuming the ICH had the most effect on those) have stabilized and that she had or has some great OTs and speech pathologists who have been able to find ways for her to continue to connect with her loved ones.

It's possible that your mother's "surgical menopause" was a partial factor in creating stress for her brain due to the total and early cessation of estrogen. Your mom and I entered menopause around the scare of 2002, when preliminary results of the Women's Health Initiative "found" that hormone replacement therapy appeared to increase the risk of breast cancer by 26%. What was later found was that ONLY women taking HRT 10 years or more after menopause had that risk and sadly, the lack of estrogen may have been far riskier than the added 8 cases per 34,000 of breast cancer.

Here are some articles you may find helpful: Transitions in metabolic and immune systems from pre-menopause to post-menopause: implications for age-associated neurodegenerative diseases by Dr. Roberta Brinton and others in 2020. She has about $75 million dollars in NIA research funding to look at the role of menopause in women's health.

Estrogen, brain structure, and cognition in postmenopausal women is also from 2020 and while it focuses primarily on the association of HRT with brain volume, it has a great diagram of all the areas of the brain that use estrogen.
Your generation may benefit greatly from understanding perimenopause, the importance of seeking to manage stress (and treat anxiety and depression) and monitor blood pressure and low-level inflammation post-menopause. Our generations typically never met a cardiologist unless we were identified with cardiovascular disease.

( I have a great PCP who agreed with my request for a (patient-pay) coronary artery CT scan, carotid intimal medial thickness (CIMT) CT scan and abdominal aorta CT scan. Piece of mind at my age--but not something I'd recommend at your presumed age of 30-40-ish.)

Imaging Study Reveals Brain Changes During the Transition to Menopause is a 2021 news release from Weill-Cornell Medicine at NYU about an NIH study led by Dr. Lisa Mosconi. As director of the Women's Health Initiative at NYU and the daughter of a mom with AD, she believes women's brain health requires a different lens than mens' and has written The XX Brain about that. I find this quote encouraging for women the age of you and my daughter:
Our study suggests that the brain has the ability to find a new “normal” after menopause, at least in most women,” said Dr. Mosconi. “We...encourage all women to take care of their brains during this transition.”

It's also possible your mother's mid-life shift work disrupted her sleep schedule, causing increase blood pressure and subclinical (and unrecognized) cerebral vascular disease. Your generation is doing a great job in insisting on work-life balance and recognizing that it's important to prioritize your own health and well-being!

Finally, ApoE2 risk of CAA with ICH appears to be still a very small risk, with a far higher likelihood of a long, healthy life! We had an ApoE 2/4 member a few years ago who was happily attending and helping to organize get-togethers in the Seattle area with other ApoE 4s before COVID--at the age of 83! During COVID, she moved with her much-younger partner to an area out of city and happily stepped back from the forum since she was doing just fine and approaching 85!

Assessment of Incidence and Risk Factors of Intracerebral Hemorrhage Among Participants in the Framingham Heart Study Between 1948 and 2016, published in JAMA Neurology in June 2020 found that the incidence of ICH in those ages 45-74 was 5 per 100,000 person years. and stable over the long period of data collection. Table 1 in the Supplement shows an Odds Ratio of about 1.5 for those having ApoE2, which would suggest at most a 7 per 100,000 risk of you having an ICH like your mother. It seems like this is a case where "relative risk" is much scarier than looking at absolute risk.

I carry two copies of ApoE4, which some studies say means I should have gotten a diagnosis of AD at age 68. Yet at age 70, I am in a study with regular cognitive testing that shows me still able to do fine on memory tests (and still as unable to draw as I was at age 21!) I can say that, from several years of getting to talk with and listen to researchers in the AD field, they would all say that we don't have to tools to predict any one person's risk yet know that no one factor is likely to be dominant in any individual.

Learning how to live well, with a known but uncertain level of risk of something you find dreadful, takes years in my experience. It does get better though. While others use mindfulness or meditation or fierce commitment to one protocol or another, I found that the Stoics' view that we can plan and live a life with purpose and meaning even when we suspect an unwanted outcome to be most helpful. I also am confident that rapid advances in imaging and plasma biomarkers, GWAS studies and preclinical and human research means you and my three ApoE 3/4 children will have a very different future than my generation.

Be well, Sirenofthepring!

Nancy
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Sirenofthespring
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Re: Cerebral Amyloid Angiopathy

Post by Sirenofthespring »

Thanks so much for this information. It is helpful and reassuring for me.
Yes, my mom was totally against the HRT because she was worried about the risk of breast cancer. In her case, it might have actually been the right decision as she was later found to carry the BRCA1 gene. On the other hand, she never had breast cancer. But breast cancer is treatable. This nightmare is not.
My mother never had high blood pressure or any cardiovascular problems aside from slightly elevated LDL (genetic). She was an athlete with a resting HR in the 50s. The funny/sad thing is we actually read the XX brain just a few months before her stroke and talked about her risk factor due to abrupt menopause. She was really doing everything she could, but due to COVID we feared putting dad into Assisted living. She was constantly stressed dealing with him and his in home caregivers, on top of fears of them bringing COVID to the house.
She did have life-long anxiety and always refused treatment. She also seemed to be depressed since she retired, and no matter how much I tried to get her to get help, she did not want to take anything or go to therapy (even before COVID)
He has cognitive impairment due to long standing hypertension and many complications due to multiple myeloma. I'm 38 and have been the sole caregiver for both my parents for the last year. It is so incredibly challenging. Dad did end up going to the AL once vaccinated (and also because he simply could not handle living with my mom after her stroke), and is doing well there. Mom never had physical limitations other than vision impairment but she has severe, SEVERE cognitive and emotional regulation difficulties. Her long term memory is fine, and short term not bad. But she has SEVERE anxiety and I have tried with a neuropsychiatrist for months and months to get her medications right to no avail. We worry about using an SSRI due to the risk of more bleeds, but she is on tons of other medications...she has an extremely poor quality of life. She has a live in caregiver. Luckily they both had LTC insurance but that will run out in 4 years...then going to spin down their savings...I worry about the future, on top of managing everything for them...medical, financial, day-to-day, etc. I have a half sister with high functioning autism who is minimally helpful for mom (can bring her to appointments, but often causes more stress than she helps to be honest.)
I feel especially guilty because I was the one who told her to get the COVID vaccine asap when it came out, and because I also told her we should wait to place dad until there were vaccines available (we would not have been able to visit him during COVID, and he is immunocompromised. One of my friends' dads died in an AL during COVID).
It is really, really hard.
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Re: Cerebral Amyloid Angiopathy

Post by Sirenofthespring »

Regarding the JAMA study I wonder if it is possible to look at data for those with APOE4/APOE2 not just APOE2...I think that particular genotype is the risky one per the Uptodate article I have read, but not aware what the RR is.
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Re: Cerebral Amyloid Angiopathy

Post by TheresaB »

Sirenofthespring wrote: Fri May 20, 2022 8:28 pm Given that my mom took such good care of her health, except for the extenuating circumstances of being a caregiver during Covid, what can I do? Could her ovaries being removed have played a role?
You seem well educated on this already, so I probably don’t have to tell you that many factors play into dementia. A person can (apparently) eat well, take good care of their health, and still get dementia.

I added the parenetical “apparently” as a modifier to “eat” because what is thought to be healthy eating may not be healthy for everyone. I know a gal whose blood sugar elevates after eating broccoli. Broccoli! The pinnacle of healthy food! I don't know how that happens, but it happens for her. I know I have personally found, through labs with my doctor, that while I don’t have food allergies, I have food sensitivities that I had previously no clue about because I sensed no issues. Such “healthy” foods as grains (gluten), nightshades (tomatoes, cucumbers, peppers, etc), dairy, and eggs were elevating the inflammation markers in my body. So it’s possible your mom’s “healthy” diet may have unknowingly contributed.

Having her ovaries removed at such a young age likely also contributed, especially if there was no hormone replacement therapy. From Dr Bredesen’s first book, The End of Alzheimer’s,
“Studies from the Mayo Clinic have shown that women who have their ovaries removed by age 40 (sometimes because they have a genetic risk of ovarian cancer) without hormone replacement therapy have double the risk of Alzheimer’s."


There's also this: Hysterectomy, oophorectomy, estrogen, and the risk of dementia. Neurodegenerative Diseases
“In the Danish study, women who underwent hysterectomy with bilateral ovarian conservation had a 38% increase in risk of dementia with onset at ages 40–49 years. Hysterectomy with unilateral oophorectomy increased the risk by 110%, and hysterectomy with bilateral oophorectomy increased the risk by 133% [2].”
Her being a caregiver for your father and not sleeping well certainly didn't help. Chronic stress negatively affects every cell in the body and our brain cells are particularly sensitive. Stress can also come from factors that we don’t even think about as stressful! You might want to read more on our wiki page on stress Stress

The poor sleep as a caregiver as well as working shifts for 7 years in her 40s disrupts the body's circadian rhythm. From this recently published article, Circadian clocks, cognition, and Alzheimer’s disease: synaptic mechanisms, signaling effectors, and chronotherapeutics
"Several recent papers have raised the prospect that the disruption of circadian timing in AD could produce a self-reinforcing feedback loop, where disruption of timing accelerates AD progression and that in turn leads to a further disruption of the circadian timing system. Thus, the disruption of the circadian timing system could be a key contributing factor to both AD neuropathogenesis, and the early and mid-stage cognitive impairments that are a central feature of AD."
There are other factors that could have contributed:

Other genes - APOE is significant, but not the end all/be all. We’re still learning about additional genes the work for/against APOE as well as independently contribute.

Head injury(ies) from an athletic event or accident seems to predispose to dementia later on. Per this article, The frightening reality of women's concussions - a personal story
“According to studies in the Orthopedic Journal of Sports Medicine, women are twice as likely as men, in like-for-like sports, to experience a concussion, symptoms are more severe for women and symptoms are likely to last longer for women in comparison to men.”
and maybe you've heard of the members of the British football/soccer team that won the World Cup from the 1965-66 season, (all healthy strapping lads) neurodegenerative diseases were a factor in 42 per cent of the deaths among that group so far, presumably from "heading" the ball.

Or perhaps Adverse Childhood Experiences (ACES) Adverse Childhood experiences (ACES) -- Association Between Adverse Childhood Experiences and Dementia in Older Japanese Adults
“Participants who experienced 3 or more adverse childhood experiences had a greater risk of developing dementia compared with those who grew up without adverse childhood experiences, after adjustment for age, sex, childhood economic hardship, nutritional environment, and education (hazard ratio, 2.18; 95% CI, 1.42-3.35). “
Other possibilities:

-Mold exposure

-Other environmental exposures – pollution, toxins, chemicals, pesticides, herbicides, noise, light

-Too much exercise? Even despite the importance of exercise for brain health, it could be argued that too much exercise produces oxidative stress which has a negative effect.

The list goes on, there are so many factors that we know can contribute to dementia, and the result of dementia seems to typically come from a mixture of many factors, not just one or two. Unfortunately, when our loved ones pass, all we're left with are unanswered questions.

I am not a 2/4, so I have only casual knowledge and frankly, there doesn’t seem to be much research on that status. I do know it doesn’t seem to present a simple mathematical solution of the 2 and 4 canceling each other out thus making a person the equivalent of a 3/3.

I do know holding a ε4 is associated with CAA and also for ε2, although less so:

From Vascular pathology in the aged human brain
CAA, especially capillary CAA, is associated with the apoE ε4 allele [37, 100, 103, 126, 130, 132]. This finding points to an important role of apoE for the development of CAA because apoE4 is less effective in the receptor-mediated clearance of Aβ [Amyloid Beta] when compared to apoE3 [19]. This property of apoE4 presumably results in capillary Aβ deposition in apoE ε4 carriers as soon as alterations in the perivascular drainage occur. In addition, the apoE ε4-genotype promotes Aβ aggregation in vascular smooth muscle cell cultures [85]. Finally, CAA-related hemorrhage is reported to be associated with the apoE ε2 and ε4 allele [37, 88, 95, 97].
(The footnotes can be found in the link).

and APOE and cerebral amyloid angiopathy in community-dwelling older persons
After further adjustment for Alzheimer’s pathology, both ε2 (odds ratio 1.707, 95% confidence interval 1.236–2.358, p=0.001) and ε4 (odds ratio 2.284, 95% confidence interval 1.730–3.014, p<0.001) were independently associated with amyloid angiopathy. … We conclude that both APOE ε2 and ε4 alleles are associated with more severe cerebral amyloid angiopathy, and the direct effect of ε2 is masked by the allele’s negative association with comorbid Alzheimer’s pathology. …
But there's also this: Genetics of cerebral amyloid angiopathy: systematic review and meta-analysis
Conclusions: There is convincing evidence for a dose dependent association between APOE ε4 and sporadic CAA. Further work is needed to better understand the mechanism of this association and to further investigate other genetic associations with CAA. But from results: There was no significant association between APOE ε2 and CAA.
Sirenofthespring wrote: Fri May 20, 2022 8:28 pm what can I do?
Do your best.

Make good choices. Nothing in life is guaranteed, but making choices to do the right things for one’s health leads to a positive outlook for the future, give a person a feeling of empowerment of not being a helpless victim, and certainly lowers the risk of prospective health concerns.

We're here for you. Theresa.J gave you a good intro to this site. NF52 also posted some wonderful information. Since she wrote as I was writing this I may be repeating, but for search results from this site on APOPE 2/4
search.php?keywords=%2BApoE2%2F4&terms= ... mit=Search and for search results on CAA search.php?keywords=CAA&terms=all&autho ... mit=Search

Also, if unfamiliar with Dr Bredesen, you may want to get acquainted with him.
We have an introductory wiki Bredesen Protocol and his second book, The End of Alzheimer’s Program offers practical information and steps to implement his protocol to reduce your chances of dementia.
-Theresa
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Re: Cerebral Amyloid Angiopathy

Post by Sirenofthespring »

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Re: Cerebral Amyloid Angiopathy

Post by NF52 »

Sirenofthespring wrote: Sat May 21, 2022 9:58 am...My mother never had high blood pressure or any cardiovascular problems aside from slightly elevated LDL (genetic). She was an athlete with a resting HR in the 50s....
She did have life-long anxiety and always refused treatment. She also seemed to be depressed since she retired, and no matter how much I tried to get her to get help, she did not want to take anything or go to therapy (even before COVID)
He has cognitive impairment due to long standing hypertension and many complications due to multiple myeloma. I'm 38 and have been the sole caregiver for both my parents for the last year. It is so incredibly challenging. Dad did end up going to the AL once vaccinated (and also because he simply could not handle living with my mom after her stroke), and is doing well there. Mom never had physical limitations other than vision impairment but she has severe, SEVERE cognitive and emotional regulation difficulties. Her long term memory is fine, and short term not bad. But she has SEVERE anxiety and I have tried with a neuropsychiatrist for months and months to get her medications right to no avail. We worry about using an SSRI due to the risk of more bleeds, but she is on tons of other medications...she has an extremely poor quality of life. She has a live in caregiver. Luckily they both had LTC insurance but that will run out in 4 years...then going to spin down their savings...I worry about the future, on top of managing everything for them...medical, financial, day-to-day, etc. I have a half sister with high functioning autism who is minimally helpful for mom (can bring her to appointments, but often causes more stress than she helps to be honest.)
I feel especially guilty because I was the one who told her to get the COVID vaccine asap when it came out, and because I also told her we should wait to place dad until there were vaccines available (we would not have been able to visit him during COVID, and he is immunocompromised. One of my friends' dads died in an AL during COVID).
It is really, really hard.
You have every reason to feel like life has dealt you and your parents an incredibly unfair hand. When you are flooded with that realization, do whatever works for self-comfort. It's only for a moment, so mint chocolate chip ice cream, a massage, a mimosa or a rom-com all qualify as perfectly OK!

I would also gently suggest that you focus first on your quality of life. At about your age I too had a mother with "complicated grief" after the death of my dad, who had seemed to be recovering well after bypass surgery, and who also had a history of anxiety and phobias due in part to the death of her mother. I also had a sister with complicated mental health needs, who like your sister usually brought more stress than help. Luckily, I was working with wonderful families dealing with pediatric TBI at the time and had wonderful support from my husband. Both work and home helped me realize that it was important not to swing in my own moods as wildly as my mother and sister might. With decades in the mirror, I would advise my younger self (and you) that this is a marathon and you're entitled to take breaks, including a vacation and including telling yourself ever day "I'm doing a great job and for this week I am putting financial, medical and day-to-day issues in the "important, but not urgent" quadrant."

With apologies for being presumptuous, here's what I see when I "step back to the balcony" and try to view your own strengths and those of your parents:
  • Your dad is in a good AL setting and given the supports there, may have a gentle path of gradual changes.
  • You have no responsibility for your mother's ICH; it took years, possibly decades for her amyloid beta to reach the point that she had a stroke. My strong assumption is that the vaccine was no more responsible than was the trip my husband and I took a few days before my dad's death. The same is true for keeping your dad at home, given the high rates of death among immunocompromised people over age 70, especially before vaccines or anti-virals. Since your intention has been and continues to be to help them, you bear no moral guilt and should push back on those feelings with "I did exactly what they would have wanted."
  • Your parents' LTC insurance will last for 4 years and it seems like then you as POA and Health Care proxy will have savings to draw on. Talk with an estate lawyer now if you don't have those legal protections, and if you do, talk with a financial planner about how to maximize their savings and equity (home, etc) to meet their needs.
  • Your mom has a live-in caregiver, which is allowing her to stay in familiar surroundings. It may be that the anxiety she feels will abate over time, since that seems to be associated with earlier stages of cognitive impairment. You may want to talk with the neuro-psychiatrist to see if low-dose CBD would be helpful, since there have been some studies of that. Also early morning light therapy and both music and movement therapy have been found in some studies to reduce agitation.
I spent decades learning from kids and families dealing with disabilities, often severe ones, and always started every meeting asking staff to report on "what is going well?" It may sound frivolous, yet they and parents often surprised each other when thinking about that. Especially with people with significant emotional disturbance, it can be helpful to work with the caregiver on what are the issues MOST affecting her ability to have a calm day and then looking at how to reduce the frequency, intensity or duration of those behaviors. Just asking the caregiver to make brief notes charting the time of day, setting (breakfast, bath, watching TV), duration and their response (ignoring, distraction, reminders) of a few key behaviors may help you test hypotheses of how changing the environment, the immediate triggers or the caregiver's response could reduce frequency, intensity and/or duration, with time and patience.

In practice this might look like "Getting dressed is a fight, so she's going to sleep in a comfortable nightgown and then simply be offered a robe in the morning. When we're going for a walk, we'll simply say "let's get you ready for a walk to the park" and start with her socks and shoes before the nightgown. Or is might be " She is often paranoid that someone is moving her things or going to hurt her" so when she says that, we will say "The house is safe and we have a camera so no one can get in; and by the way, can you tell me about your high school again?" These aren't likely to be specific to your mom's needs, but might help you and the caregiver look from the global "she has an extremely poor quality of life" to the specific "she likes to walk, so let's increase walks."

Be kind to yourself and know that you are remembering all these incidents much longer than she is.
4/4 and still an optimist!
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Re: Cerebral Amyloid Angiopathy

Post by Sirenofthespring »

Thanks I really appreciate your response. I know I need to work on self-care, trying my best...I don't have any other family, but I do have supportive friends. Mom was by best friend, which makes this so very hard...
I do have an elder law attorney - doing the best we can to plan.
The thing is mom's memory is mostly ok, but the stroke affected her right temporal-parietal-occipital lobes which affect emotional regulation. We tried lots of medications - nothing seems to work. She wants the caregiver to constantly rub her back to calm her anxiety/breathing and it developed into an obsession, almost like OCD. She keeps calling me up and demanding I come over and rub her back. That's why my dad had to move out, he could not take it. Trying to work on boundaries...
I HAVE been thinking about adding CBD, and/or psychedelics because traditional medications have just not been very helpful. However, I am just worried about how it will go given her fragile blood vessels. She self medicated her anxiety with CBD prior to the stroke, like massive doses.
Plus now she sundowns in the evening and thinks she is at a restaurant...(this is new)
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Re: Cerebral Amyloid Angiopathy

Post by NF52 »

Sirenofthespring wrote: Sat May 21, 2022 1:35 pm Thanks I really appreciate your response. I know I need to work on self-care, trying my best...I don't have any other family, but I do have supportive friends. Mom was by best friend, which makes this so very hard...
I do have an elder law attorney - doing the best we can to plan.
The thing is mom's memory is mostly ok, but the stroke affected her right temporal-parietal-occipital lobes which affect emotional regulation. We tried lots of medications - nothing seems to work. She wants the caregiver to constantly rub her back to calm her anxiety/breathing and it developed into an obsession, almost like OCD. She keeps calling me up and demanding I come over and rub her back. That's why my dad had to move out, he could not take it. Trying to work on boundaries...
I HAVE been thinking about adding CBD, and/or psychedelics because traditional medications have just not been very helpful. However, I am just worried about how it will go given her fragile blood vessels. She self medicated her anxiety with CBD prior to the stroke, like massive doses.
Plus now she sundowns in the evening and thinks she is at a restaurant...(this is new)
This is a quick and maybe crazy suggestion, but I've seen stories of using animated "pets" for calming agitation and wonder if your mother could channel her anxiety into rubbing the pets fur rather than having someone rub her back. My MIL was greatly comforted by having a very realistic (to my eyes) cat in her AL room. Here's a site for one--no personal experience with it, but the reviews are positive and they offer a range of pets: https://www.alzstore.com/alzheimers-com ... p/0604.htm

My mother thought she was in a nice hotel in her nursing home; a restaurant also sounds like a lovely assumption.
4/4 and still an optimist!
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