Alzheimer's caregivers, guardians, and conservators

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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SusanJ
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Re: Alzheimer's caregivers, guardians, and conservators

Postby SusanJ » Fri Oct 26, 2018 6:23 pm

circular wrote:That extra awareness was the last thing I needed to be dealing with.


Oh man, so sorry you have extra stress from the experience on top of all the other stress in your life. Hugs my friend. Practice extreme self-care tonight, ok?!?!

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NF52
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Re: Alzheimer's caregivers, guardians, and conservators

Postby NF52 » Fri Oct 26, 2018 8:37 pm

circular wrote:So some of you may have heard about the 'virtual dementia experience' or 'virtual dementia tour'. It's often recommended that caregivers go to one of these, when it's offered locally, to get an idea what it's like to have dementia. They modify your sensory input in multiple ways, and then before entering a room with various objects, you're given instructions what to do when you're in there, tasks relating to clothes in particular.

As a caregiver I've been meaning to do this for a couple years, so I had it on my calendar for this week, something to check off a list and to walk away with a better understanding of what's it's like to have serious memory issues. Now that I've done it, I don't think I should have. Like learning one's apoe4 status, there's no going back...

Some day in the future I may be glad I did the virtual tour, it may even motivate me to be disciplined on my quest to prevent or delay this horrible disease, but today I wish I hadn't gone. I think in my case I was better off not experiencing that. I was already a loving and patient caregiver, so I didn't need this hit of devastating and disorienting reality...
. I’m so sorry your empathy led you to have such a terrible experience. I have heard of these and have suspected that they cannot truly offer an experience that is valid across the many variations of AD and other dementias.

I once was in an analogous session to show teachers what it is like to be legally or totally blind. Since I’m “legally” blind whenever I take my glasses off due to high myopia, I thought, “yeah, big deal, I can walk around all day like this”. I was shocked when others who never wore glasses said they felt dizzy, scared, disoriented. The same is true for exercises that try to present dyslexia, or autism spectrum. Just because my mother-in-law sometimes thought that people were moving her slippers didn’t mean she couldn’t still knit and watch the news. My grandmother thought President Nixon was bringing her ice cream, but still remembered her children and grandchildren. Even when my mother couldn’t find her way home from Wegmans, she thought the young man helping her was wonderful, and was only mildly upset about the loss of years of spatial memory.
We can be empathetic without having to experience the reality of those we help. And what you experienced today is likely far from your own future reality, dear circ.
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Re: Alzheimer's caregivers, guardians, and conservators

Postby circular » Fri Oct 26, 2018 9:32 pm

Thanks for the support Susan and NF. I’m working on the self care, but I’m sometimes worried about my future. I do think a lot of health and other care providers (hair cutters etc) who may work with people with dementia, and who may not naturally be very empathetic or intuitive about dementia, probably should be required as part of their work to do the tour. I did learn a lot that’s valuable, even with the limitations, but the timing was all wrong.

Your points are well taken NF. At the same time there’s been a fair amount of research into the VDT, apparently rising to the level of an evidence base, and I get the feeling they are still improving it as they learn. Some of the sensory modifications are common in non-demented aging patients, and combined with other tweaks more specific to dementia it does make you appreciate in a general but real way what it would be like to be confused in your environment to such a degree and why certain behaviors and affects would arise. It was pretty bizarre that healthy people including me were exhibiting the behaviors seen in memory care residents.

If anyone has trouble sticking to a brain healthy lifestyle, to the extent we can figure that out, it might provide powerful motivation.
ApoE 3/4 > Thanks in advance for any responses made to my posts.

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Re: Alzheimer's caregivers, guardians, and conservators

Postby chrissyr » Wed Jan 23, 2019 9:57 am

Hello to caregivers, past and present!

I am wondering if anyone has experience with medications to treat anxiety in moderate to severe AD (approx stage 6). My mom has struggled with this on and off for a few years, but at this point it is very adversely affecting her quality of life. Lately when we visit, the aides give us a "oh... good you're here, she's having a tough day" look. My mom's expression is often just a crinkle of anxiety and worry. She can hold on to perseverations of worry and not let go. Usually lately she is sure that her parents are expecting her and will be very worried. Or that she was with someone and she has to find them.

She is on 30 mg of citolopram ( celexa ) . In October, she began on 25 mg of quetiapine (seroquel), and then that was increased to 50 in late November. She had been on 10 mg (low dose) amitriptyline for a few years (for sleep.) In late November, she began having pain and trouble walking on and off. Then in December she was found on the floor near her bed in the morning many days (never later in the day). On and off pain/trouble walking, some weeks fine, then limping again. Then she had significant trouble last week and we brought her to the ER -- they did a workup and CT scans, xray etc, and kept her for 2 days. We were with her all of her waking hours. They did treat her for a minor UTI. But we noticed major dizziness at times and she seemed to be having trouble with postural hypotension (documented).

So, we asked to review her meds. She was taken off Valtrex (also a recent add in due to cold sores) taken off amitriptyline, and Seroquel was decreased back to 25. Melatonin 5mg was added at night. That has only been for 2 days, but we have had her first two days of not being found on the floor and she is walking well and able to get out of bed.

So our next task is to work on the anxiety. We are not concerned with her becoming addicted to something. I feel that her facility is managing the anxiety behaviorally as well as can be expected. They are trained to agree with the person, distract, engage. They definitely give white lies that hopefully are not counterproductive, such as "they are going to be here at 9 am tomorrow!". They are working on personalized music on devices for each resident to manage anxiety.

Has anyone had an experience like this with a medication that was helpful? Also, has anyone noticed that this is a stage that she will eventually move through, or does it just morph into something else?

Thank you so much in advance for any wisdom, knowledge and advice!

And wishing peace and serenity to all going through this process!

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Re: Alzheimer's caregivers, guardians, and conservators

Postby SusanJ » Thu Jan 24, 2019 7:54 am

chrissyr wrote:Has anyone had an experience like this with a medication that was helpful?


I don't have direct experience, but will be interested in hearing from others that do.

Just curious, did your mom always have anxiety, or did it start with the AD?

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Re: Alzheimer's caregivers, guardians, and conservators

Postby CarrieS » Thu Jan 24, 2019 10:56 am

chrissyr wrote:Has anyone had an experience like this with a medication that was helpful? Also, has anyone noticed that this is a stage that she will eventually move through, or does it just morph into something else?

My personal experience with my mother was a lot like yours. She was on a huge amount of medications to try to treat anxiety and physical ailments so was falling a lot. We ended up talking her off everything except for essentials (like thyroid) and she also improved dramatically in the physical realm. We also found that treating her UTI's immediately was the key to keeping her feeling better and not falling.

Regarding the anxiety, yes, it was a difficult stage but I also noticed that everyone went through it to some degree (and that helped me feel normal I guess). I ended up removing photographs from her room after realizing that when she was stressing about "those children being lost and her needing to find their parents" was in response to a picture of my brothers and me when we were small. She didn't retain memories from the past or present so it wasn't of any comfort to her to see pictures of her mom, siblings or kids. I learned to agree with her (why YES, the sky IS a particularly beautiful shade of green today) and not try to correct her. Her reality was something that I just rolled with and told "white lies" too. Early stages were filled with hallucinations that were very real to her (the men upstairs were stealing her bras so she hid them around her single story house). I remember other AD residents coming up to me and adamantly insisting that I perform some task (that had to do with their career), some kept asking what time the bus was going to arrive, some told me that they got on the bus and now they were here and needed to get home. I don't remember anyone landing on a drug that helped during this stage. I found that all of this did indeed decrease with time and my mother became calm and sweet again. It felt like it lasted a very long time but trying to laugh, sing, dance, drinking chocolate milkshakes and finding joy were we could helped me cope and seemed to help my mother cope too during this stage.

Wishing you peace and serenity and HUGS too.
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Re: Alzheimer's caregivers, guardians, and conservators

Postby chrissyr » Thu Jan 24, 2019 5:27 pm

Thank you!
I don't remember anyone landing on a drug that helped during this stage. I found that all of this did indeed decrease with time and my mother became calm and sweet again.

That is great information.

We moved pictures of her parents out a couple of years ago-- when upset she would say "I can't believe that my parents have died". She now at least thinks they are coming later to get her :) She usually enjoys seeing the pictures of the grandchildren even though she doesn't know who they are. But when recently hospitalized, she made a comment about "all the children being killed" and was upset by it.

Your prior experience will help guide us through the coming time. I do have the feeling that my mom would be able to worry through anything at this point unless the medication was pretty strong-- and if it were pretty strong she would be unable to walk/talk/enjoy the activities she does now.

Susan, she was not always anxious. In later years, she did sometimes have some "free floating anxiety" at times, but also had dealt with the illness and loss of my father. She was never treated for depression or anxiety -- this seems to be directly related to her dementia. She was always a leader and a puzzle solver and a doer. I see some of the other residents who are more happy go lucky, and perhaps they are more willing to roll with things!

I really appreciate the support; it's powerful to be heard by others who have some understanding of the disease <3

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Re: Alzheimer's caregivers, guardians, and conservators

Postby SusanJ » Fri Jan 25, 2019 8:35 am

chrissyr wrote:She was always a leader and a puzzle solver and a doer.


Thanks for the insight. My husband and I are about to undertake helping with the care of his sister, who fits this description. So, I appreciate the information that both you and CarrieS shared, because now we can be on the lookout for signs of anxiety.

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Re: Alzheimer's caregivers, guardians, and conservators

Postby mike » Fri Jan 25, 2019 11:41 am

CBD oil can often help with anxiety, but not sure if it would help in this case..? Might be worth a try if it is legal in your area.
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Re: Alzheimer's caregivers, guardians, and conservators

Postby circular » Fri Jan 25, 2019 2:30 pm

Lexapro in low doses helps some.

I’ve been meaning to Google whether essential oils might help in dementia management. Lavender comes to mind as a good relaxant. It would be interesting to just rub some mixed into a carrier oil onto her back, where she can’t get it on her hands and then in her eyes. Or diffuse a bit in her room just to see if it has any affect one way or the other. You could have her sniff it first to see if she even likes it. Look for a pure one, I react badly unless the oils are truly therapeutic grade: Aura Casia and EO are easy to find if you have a health food store. No need for multimarketing channels like DoTerra or Young Living.

You could also buy some oils and have her sniff them all from the bottle and watch her reactions. If depression underlies her anxiety it’s possible something more citrusy would help.
ApoE 3/4 > Thanks in advance for any responses made to my posts.


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