How to proceed? - M92 - E3/E4

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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Shrimp
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How to proceed? - M92 - E3/E4

Post by Shrimp »

Hello - PT caregiver for Dad (Shrimp) - 5' 10"/165 lbs. He is 92, E3/E4 with AD who experiences good and bad days/hours. His sister (90) also has AD. Broke his hip 18 months ago and due to Covid was not allowed family to accompany him despite escalating to hospital management. He was released with hospital delirium and has not been able to recover to his prior state which included street only driving, personal care, attention to television, conversation and better balance. There was originally improvement that is now declining that on bad days makes it increasingly difficult to manage him at home especially when his sleep cycle is off as we have full-time jobs as well and rotate night coverage. He is aware that his memory is failing and that he can no longer do things he once did. He also knows when he has had a bad day and apologizes for it. Physically he can walk 1/4 mile without stopping and does arm exercise with 3 lb weights. He lives with our mother, his wife of 63 years, and a caregiver is always present. For those interested to know his health history. He had primarily a meat, vegetable and potatoes diet and enjoys dessert. Very little fast food. He considered salad "rabbit food". He had a stent placed at age 72. He exercised regularly - tennis, cycling, gym, even a triathlon in his late 60's but was not really an "athlete". This was a method of socializing. As he grew older, these activities were curtailed and more of his friends passed. I think this may have been the impetus of the original decline and the anesthesia and confusing experience in the hospital pushed it. The initial signs were late payments and a review of the checkbook revealed his handwriting changes. We know we are very lucky to have this relationship with our parents for so long; however, we have the quandary of how to proceed and I'm sure there are others here that are experienced and can provide some guidance. At the same time, we need to consider our health as some are likely E3/E4 too. He currently is prescribed Donepezil and Memantine. Should we expect only decline at this stage? Does it make sense to put him on a keto diet with supplements, continue as is, or consider a palliative approach? We'd like the best version of himself that is possible but need to be realistic. Thank you so much!
SBee
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Re: How to proceed? - M92 - E3/E4

Post by SBee »

Shrimp wrote: Sun Jan 02, 2022 3:11 pm Hello - PT caregiver for Dad (Shrimp) - 5' 10"/165 lbs. He is 92, E3/E4 with AD who experiences good and bad days/hours. His sister (90) also has AD. Broke his hip 18 months ago and due to Covid was not allowed family to accompany him despite escalating to hospital management. He was released with hospital delirium and has not been able to recover to his prior state which included street only driving, personal care, attention to television, conversation and better balance. There was originally improvement that is now declining that on bad days makes it increasingly difficult to manage him at home especially when his sleep cycle is off as we have full-time jobs as well and rotate night coverage. He is aware that his memory is failing and that he can no longer do things he once did. He also knows when he has had a bad day and apologizes for it. Physically he can walk 1/4 mile without stopping and does arm exercise with 3 lb weights. He lives with our mother, his wife of 63 years, and a caregiver is always present. For those interested to know his health history. He had primarily a meat, vegetable and potatoes diet and enjoys dessert. Very little fast food. He considered salad "rabbit food". He had a stent placed at age 72. He exercised regularly - tennis, cycling, gym, even a triathlon in his late 60's but was not really an "athlete". This was a method of socializing. As he grew older, these activities were curtailed and more of his friends passed. I think this may have been the impetus of the original decline and the anesthesia and confusing experience in the hospital pushed it. The initial signs were late payments and a review of the checkbook revealed his handwriting changes. We know we are very lucky to have this relationship with our parents for so long; however, we have the quandary of how to proceed and I'm sure there are others here that are experienced and can provide some guidance. At the same time, we need to consider our health as some are likely E3/E4 too. He currently is prescribed Donepezil and Memantine. Should we expect only decline at this stage? Does it make sense to put him on a keto diet with supplements, continue as is, or consider a palliative approach? We'd like the best version of himself that is possible but need to be realistic. Thank you so much!
Hello Shrimp and a warm welcome to the community!
We are glad you found us! Thank you for taking time to share your dad's story as well as your concerns as caregiver. Your thoughtful questions demonstrate a truly caring but "realistic" approach to finding the best way to support your dad moving forward.

As a support team intern, I can offer some general guidance on available resources and how to navigate the site. Other members will be able to support you with suggestions/advice for your specific questions.

The Primer is a detailed and informative resource written by a practicing M.D. with ApoE4/4. It includes information about the biochemistry of the ApoE4 gene and offers a variety of research-based prevention strategies.

The How-To Guide offers tips on how to navigate forums and respond to posts including how to quote members (use the quotation icon in the upper right of any post) so they get an email notification of your post. It also demonstrates how to use the Search function for topics, and how to subscribe to topics of interest in the forums.

Finally, Our Stories includes stories of other community members who may be facing similar challenges as your own. Here is a link to a specific section of this forum for Alzheimers Caregivers which might give you some additional information. This community is super supportive and caring of its members, and we hope you will find comfort in knowing this!

I hope you find these tools useful as you continue to explore the site. Please feel free to reach out if you have any additional questions.

Warmly,
Sue
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NF52
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Re: How to proceed? - M92 - E3/E4

Post by NF52 »

Shrimp wrote: Sun Jan 02, 2022 3:11 pm Hello - PT caregiver for Dad (Shrimp) ... We know we are very lucky to have this relationship with our parents for so long; however, we have the quandary of how to proceed and I'm sure there are others here that are experienced and can provide some guidance. At the same time, we need to consider our health as some are likely E3/E4 too. He currently is prescribed Donepezil and Memantine. Should we expect only decline at this stage? Does it make sense to put him on a keto diet with supplements, continue as is, or consider a palliative approach? We'd like the best version of himself that is possible but need to be realistic. Thank you so much!
A warm welcome, Shrimp, from someone with two copies of ApoE4 whose mother (at least ApoE 3/4) also experienced delirium after a hospital stay with congestive heart failure at age 85 and whose sprightly Scottish paternal grandmother experienced the same sudden cognitive decline at age 87 after a 6-week hospital stay due to salmonella.

Unfortunately for your father, the hospital's disruptive schedules, isolation, noise and COVID-necessary face masks and shields probably accelerated the subtle signs of likely 15-20 years of amyloid plaques and tau tangles, with more recent loss of neurons in memory areas like the hippocampus. The coronary heart disease that required a stent 20 years ago was likely continuing to exert some silent changes in both his coronary and cerebral arteries. (My Dad, who was born about a decade before yours, had quadruple bypass surgery at age 67 and died 8 months later of cardiac arrest, with completely re-blocked major arteries and severe damage to his left ventricle from a "silent" heart attack.)

Although it may seem strange to talk about the relative "good news", I think there is some for you and your dad. I'm a Consumer Reviewer on federally-funded grant applications for Alzheimer's and traumatic brain injury (TBI) and a member of a Clinical Research Participant Advisory Board, which allows me to hear from smart people in Zoom meetings and virtual conferences of the latest research on Alzheimer's and ApoE 4.

Here's some of the takeaways that have surprised me and a few suggestions:
  • The effects of ApoE 3/4 in males are seen primarily before the age of 85. After that, changes are more likely slower and due to age, than ApoE4. Your dad's triathlete performance and lifelong exercise routines gave him considerable "cognitive resilience" against the effects of ApoE 4 and heart disease! Keep reminding him that he was an athlete! He deserves to "rest on his laurels" on those "bad" days in which he may be blaming himself for being a burden, or less than he feels he could be.
    Suggestion: If he can continue to do some activities in a local Y or senior center, or even a day program combining socialization and exercise for those with mild stage Alzheimer's, it may help his balance and his mood. You should also be able to get a prescription from his doctor for balance and strength PT. While having weeks of PT after foot surgery 3 years ago, I observed wonderful support to some folks like your father, who were sometimes making faster progress than I was! The gym I went to also had personal trainers who could take the "laps" track (and talk while walking) with those needing some monitoring. Then the "seniors"might sit in the lounge and visit with friends over coffee-which is good for brains!
  • People with mild-moderate cognitive impairments are often acutely aware of the changes and view them as worse than their family does. So a problem remembering something becomes a "bad day" even when it lasted less than 5 minutes.
    Suggestion: Using terms that he might have used in his career or hobbies can help re-framing. For example, "let's see if we can engineer a better way to sort your clothes" or "how about if you use our brains to grab those words you need--just like we used to grab tools for you?" You can also suggest a brief nap, a quick walk, listening to favorite music or watching a favorite Western, WWII movie or TV show to provide a "cognitive break" which is often needed to deal with brain fog after delirium.
  • Your father sounds like someone who kept busy with his home, finances, driving, actitivities. He may be bored and restless, which leads to feeling anxious or bad.
    Suggestion: Talk with all of the care partners to see who can plan and carry out activities with your dad. My mother loved a visit to a classical art exhibit during a time when she was bothered by roofers making tons of noise! She loved going out to lunch, even if she didn't remember it that evening. If your dad has friends and neighbors who can be enlisted for occasional events, use them to play checkers, make cookies or pizza, watch a ball game, or just re-visit favorite stories from work. My 94 year old uncle loved to have friends visit and discuss their golf games--even though, as he explained to me "At our age our knees start giving us problems when we play golf." He was in a nursing home for heart and orthopedic issues at the time! If friends aren't around, check out this directory of Memory Cafes or contact your local Council on the Aging or the Alzheimer's Association's 24/7 Help [#800-272-4900]. Your mother also needs some respite, so make sure she gets to go out on some special times too! Even a lunch date with a grandchild could be special; my mother-in-law at age 85 loved to get her hair done and then go to Tim Horton's, which she called "The Place Where the Irish Eat" for some reason I never could figure, although she was 100% Irish herself.
  • Changes in cognition after the age of 90 are almost always due to several factors, including cerebrovascular changes (narrowing of small blood vessels in the brain and reduced strength of the blood-brain barrier), and changes in brain synapses (called "senescent cells) that makes brain networks function inconsistently and more slowly.Suggestion: talk with your father's cardiologist about how to best support his continued vascular health; they may have suggestions that would not be burdensome to your dad that could improve everything from his heart and brain health to his stamina and balance. See if his doctor would test his B-12, which current guidelines on clinical trials suggest should be 500 or above and supplement with methylcobalamin, not cyanocobalamin, if needed.
  • Most importantly, thinking about palliative care doesn't mean not thinking about quality of life and improvements. It simply means thinking about which decisions make sense and which might be too burdensome. Your father, his wife, you and other family members have the gift of time to talk, share your fears, hopes and feelings about these last 2 years and about the future. Talking about what Dr. Atul Gawande calls "values and preferences" in his book Being Mortal: Illness, Medicine and What Matters in the End may be a gift to all of you now and in the future. [My mother, who had a cat phobia, made me promise that we would never move her to a home with cats. Not only did I promise, but I shut down a sister and a cousin who suggested just such a place months before she died!]
  • Most importantly, this can be a time of choosing person-centered accommodations that provide the best quality of life and also preserve your parents' shared sense of life as safe and even joyful.
My mother had "palliative care" for just the last few days of her life; I wish I had advocated for that months earlier as her health care proxy and power of attorney. The most valuable conversation I had with her was a few weeks before she died of heart failure with moderate dementia (great language and same wonderful personality, but significantly impaired memory) at age 86. She wanted to go home from the nursing home where she had been for about 6 weeks after a second emergency hospitalization for heart failure. No one had told her what her condition was or used the term Alzheimer's, a verboten term among some of my siblings and extended family. Once the geriatrician gently explained to me that she was, in fact, not likely to survive long with a greatly damaged heart, I explained to my mother why going home would only lead to more ambulance trips. I told her that the doctor thought it would likely not be too long before her heart would give out. Her response was immediate: "Thank you for telling me. Then I shall cherish the wonderful life that I've had." She died peacefully 3 weeks later, with her last lucid moments sitting up, smiling widely.

The gift of caring for a parent in late life is one that comes with stress and tears, yet also with deep meaning and love. My wish for you is to have support for yourself and your father in whatever path his journey takes.
4/4 and still an optimist!
Shrimp
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Re: How to proceed? - M92 - E3/E4

Post by Shrimp »

Thank you for your knowledgeable and thoughtful assessment and suggestions. I especially appreciate the detail of your shared experience with elderly parents. I will certainly discuss this with his cardiologist and read the recommended book. I, too, am an optimist and wish the best for you as well.
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Re: How to proceed? - M92 - E3/E4

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NF52 wrote: Mon Jan 03, 2022 10:05 am Talking about what Dr. Atul Gawande calls "values and preferences" in his book Being Mortal: Illness, Medicine and What Matters in the End may be a gift to all of you now and in the future.
Thanks! I've ordered the book. Though I dealt with my mother's end of life dementia years ago, now have a younger family member with brain cancer at 4.5 years after an initial life expectancy diagnosis of 12-18 months. There may be information in the book that helps make the best of this stage.
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Re: How to proceed? - M92 - E3/E4

Post by NF52 »

NF52 wrote: Mon Jan 03, 2022 10:05 am Talking about what Dr. Atul Gawande calls "values and preferences" in his book Being Mortal: Illness, Medicine and What Matters in the End may be a gift to all of you now and in the future.
Tincup wrote: Sun Jan 09, 2022 2:35 pmThanks! I've ordered the book. Though I dealt with my mother's end of life dementia years ago, now have a younger family member with brain cancer at 4.5 years after an initial life expectancy diagnosis of 12-18 months. There may be information in the book that helps make the best of this stage.
My 37 year old daughter read it around the same time I did, and found it just as compelling. If I remember correctly, he does write about how important those conversations are with people facing life-threatening illness at young ages. He asks "what is important to you regardless of how much time you have? "

I hope each day has moments of love and joy for your family member.
4/4 and still an optimist!
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