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Dementia progression, tips, or just support


Spryte
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Elderly parent lives with us so we can care for her.  She has a dementia diagnosis, but it’s been fairly manageable to this point. I do most of her activities of daily living for her, around our school schedule.  It’s doable but not easy.

We’ve now had a few episodes in which she doesn’t know who we are, where we are, why she is here, how she got here, etc.  The episodes are increasing in frequency - we’re at two in the last ten days or so. Always in the evening (sun downing).

I have read the 36 Hour Day book - a couple years ago, need to re-read it.

We’ve found a few tricks that seem to help stave off these periods - staying hydrated, taking her regular meds on time.  I do a lot of sitting with her and reassuring her that she’s safe, we are her family, we care for her, and this is her home. If she’s sundowning and really in a confused head space, I can put her to bed and she’s mostly been fine in the mornings. 

But not today.  She went to bed last night not knowing us, and this morning she knows I am her daughter but is still fuzzy on details about most everything.

I’m just stunned this morning, it’s the first time we’ve had confusion in the morning.  I can’t sit for hours explaining over and over who she is, who we are, where we live, how she got here. 

Some of you might remember that I’m dealing with some big scary health issues of my own.  So that’s physically and emotionally factoring into my day as well. I’ve got major doc appointments today, and have to make up for school time when I was hospitalized.  Aaaagh. I’m stressed.

Is this normal progression?  The episodes begin in the evenings then progress to different times of day?  And more often? What about when we don’t have a dedicated person to sit and answer and answer and answer the questions and constantly reassure?  I feel terrible that I can’t do it 24/7.

Any tips?  Experience to share about how you’ve seen things progress?  Just support?

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I wish I had some information for you, Spryte, but all I can do is send you some hugs. 

I was away from the forum for quite a while, so I didn’t realize that you are having health problems. I’m so sorry!!! I hope whatever is going on will be treatable and that you will be well again soon. I feel so badly that I didn’t know. I could have at least popped in to offer you some virtual support. 😢

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I’m sorry. It’s really tough. For my relative it was important that she be surrounded by familiar objects. There were also blown up photographs with names easily visible and a board with the date, the location, the weather, and answers to oft-repeated questions.

She did eventually have a full-time caregiver. Initially this was her lifelong best friend, and later the friend was joined by a full-time live-in nurse. I don’t think it would have been possible to care for her at home without this help.

Big hugs to you.

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2 minutes ago, bibiche said:

I’m sorry. It’s really tough. For my relative it was important that she be surrounded by familiar objects. There were also blown up photographs with names easily visible and a board with the date, the location, the weather, and answers to oft-repeated questions.

She did eventually have a full-time caregiver. Initially this was her lifelong best friend, and later the friend was joined by a full-time live-in nurse. I don’t think it would have been possible to care for her at home without this help.

Big hugs to you.

Oh, a memory board type thing is a great idea!

I’m going to start on that this weekend!  Seriously, I had thought of a photo album, but putting reminders where she can see them without effort is better idea.  Thank you.

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Another thought- I don’t know how mobile your mother is, @Spryte, so this might not apply. My relative had early-onset Alzheimer’s and was quite mobile for some time. She liked to prepare coffee and tea and putter around in the kitchen, so there were explicit instructions on everything because sometimes she would forget the simplest things. If your mother isn’t mobile but likes to look at the television, for example, maybe you could make sure she has instructions on turning it on and off. Basically things that might normally be very easy can become insurmountably difficult and be a source of significant frustration. 

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10 minutes ago, bibiche said:

Another thought- I don’t know how mobile your mother is, @Spryte, so this might not apply. My relative had early-onset Alzheimer’s and was quite mobile for some time. She liked to prepare coffee and tea and putter around in the kitchen, so there were explicit instructions on everything because sometimes she would forget the simplest things. If your mother isn’t mobile but likes to look at the television, for example, maybe you could make sure she has instructions on turning it on and off. Basically things that might normally be very easy can become insurmountably difficult and be a source of significant frustration. 

Yes!  I will make some giant instruction cards, too.  We run up and down the stairs all day helping with the TV.  🤣

Kitchen - maybe I’ll preemptively make a  card for the coffee, too.  We made menu cards for breakfast, and that was a game changer.

Thanks.  Sometimes I just need some practical reminders about things we can do.  

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1 minute ago, Jean in Newcastle said:

Check for a UTI or any other kind of infection.  An abrupt change like that can often be caused by those. 

Yes, always a good reminder!  
 

We have a monthly subscribe and save on Amazon for the tests.  I’ll run one today!

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Sending lots of hugs. This is just really hard.

Yes, that is a normal progression. 

I found a book at our library which helped me, but I can't seem to find it listed anywhere now. It's probably a bit out of date. Anyway, in looking for it, I found this list of other books which could be helpful, as the website they're posted on might be also. I haven't looked at it closely, so no endorsement, just a possibility.

https://dailycaring.com/must-read-alzheimers-books-for-caregivers/

One thing I can advise is to think ahead. You may find a time comes when you can't manage her care at home. It's a good thing to plan for that day, hard as it is. Check out the memory care units near you, figure out finances, find out how long waiting lists are. Just be informed so that you can have a plan ready if you get to the point where she can't safely stay with you. You may not need it, but it's hard to start from the beginning when things are really difficult. At that point you need help, and likely a placement somewhere.

You need to make sure that you can sleep at night, and take care of yourself and your kids. That may not be consistent with full-time caregiving. It's a very hard situation. I would read everything you can, and consider how her care needs may change. 

Again, lots of hugs.

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My best advice to you is-  take care of yourself.  We as caregivers tend to put ourselves on the back burner but shouldn’t.  Take time each day for yourself.  Remember it is perfectly ok to admit when you are overwhelmed as a caregiver and need to bring in some help ( nurse or assisted living place).  Hugs to you and your family. 

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Things we did with my father, have notes with written things like "You get a shower on Monday, Wednesday and Friday."  Poster up with everyone's picture and large print name.  Daily verbal reminders over and over again, note on his walker to remind him to use it a certain way. He always did something wrong with his walker, but I can't remember what it was.

Look into Dale Bredesen, MD info for ideas to reverse dementia.  We used a lot of supplements that I think slowed his progression, made him more manageable and I think more comfortable and happy. Phosphatidyl choline or lecithin, Alcar, Phos serine, GPC (all together in something like Brain Vitale by DFH or Acetyl CH by Apex), high dose vitamin D.

Avoid mercury: no high mercury fish, no flu shots from multi dose vials (*50,000ppb mercury in multi dose flu shots, 2000ppb mercury in "perservative free" or single dose flu shots), white fillings only, no amalgam.

*The EPA defines 200ppb mercury in a liquid as a hazardous waste.

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Another tip:  be aware that many dementia patients won't feel hungry even when their body needs food.  We had to gently coax MIL into having a bite or two.  Then her body's hunger signals would kick in and she would eat a bit more willingly.  She wasn't necessarily a robust eater but she would then eat enough to sustain her.  Before I insisted on doing this, family members were "leaving it up to her" and she literally was days away from starving to death from a misplaced idea that she should have the dignity to decide on things on her own.  Only her ability to decide things was gone so it wasn't dignity at all.  It was abuse (not on purpose but that was the result). 

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32 minutes ago, Jean in Newcastle said:

Check for a UTI or any other kind of infection.  An abrupt change like that can often be caused by those. 

Exactly my thought.  First thing to check with a sudden change in mental status.

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Fwiw, it was around that time that reading dropped off the skill set at times. An orienting board is helpful, but not a shoo-in. You might try a more solid routine for her, with snack, music, etc. A weighted blanket or a routine task (like folding towels) might also be soothing.

If you had been leaving her home alone, this is a time to consider adult day care—either a drop in facility or a paid hourly.

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16 minutes ago, prairiewindmomma said:

a routine task (like folding towels) might also be soothing.

I forgot that once my grandmother was in a nursing home memory care unit they would bring out a big basket of washcloths and small towels for the residents to fold!  It really seemed to make them happy.  

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I'm sorry. It's worth talking to the doctor and checking for a UTI. But it's also not atypical with dementia for there to be a fairly quick downturn. With my mom, there was a long-term decline (she lived with Alzheimer's for 15 years) with lots of plateaus, but also there were changes that came on more quickly. There are also good days and bad days, so problems on one day might not be there the next, but eventually will settle into a new, lower functioning norm. Until the next changes.

Be watchful for her to be up and about during the night. It is very common for dementia patients to lose typical sleep patterns. My mom lived with us for almost a year, and keeping her safe at night was one of the troubles that let us to decide that we couldn't manage her care at my house any more. I had very small children, so I didn't want to hire a night nurse to be in the house with us. But having an aide at night, so that the family can sleep, may end up being a need. We had alarms on the doors and closed off a portion of the house so that Mom couldn't wander too much or have access to the kitchen. She didn't understand this and would try to work around the closed doors, while we were sleeping.

One of the wearing aspects of caring for Mom was the constant questioning -- the same questions over and over and over and over again. The doctor had offered anxiety medicine, and I was reluctant to add it on, but in hindsight, I wished I had. You may ask your mom's doctor whether a med adjustment might help.

One suggestion is to give your person a notebook and to write in it answers to her common questions. I gave my mom a red notebook, because red was her favorite color, and she would carry it around, but she didn't read it, so that didn't work for us, but it's worth trying.

I had my mom sit in the schoolroom with us, while I did lessons with my kids. Sometimes I would give her a coloring page (my kids were little) or whatever craft we were doing, for her to follow along. This had a lot of drawbacks and was stressful, but Mom was a wanderer, and I didn't feel safe having her out of my view for longer periods of time. My grandmother with Alzheimer's was the type to sit around -- you could plant her in a chair by the TV, and she would stay there, until someone had her move to a different room or chair later on. But my mom was restless.

Honestly, this was the roughest stage of Mom's dementia journey, because her needs were high, and I didn't have help. She was anxious and restless and worried, and nothing I could say made a difference, but I had to keep at it.

Alzheimer's runs in my family, so DH and I talk a lot about my own potential future care. Our plan is that he would hire aides to sit with me, so that he can have a break.

I hate to say this, but I'm going to be honest, because otherwise, how is it helpful? I think you need to accept that this phase is coming, if it's not here continually right now, and that it's not going to improve but will get worse, and that you will need to find ways to give yourself a break. Either take turns having family members sit with her, have her leave the house to attend an elder daycare center (these exist, but you may not be able to justify the risks during the pandemic), or hire an aide during your homeschool hours.

I'm sorry.

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Just a note about one of the unexpected ways that having an aide benefited my mom. There were a few times when she was staying with me, when I had to send her back home to stay in her own house with my dad, for a bit (two hours away), because my family was going to be out of town. During those times, my dad hired someone to come and help mom get dressed and take a shower, etc. Mom HATED changing her clothes and taking showers, and it was a trial whenever I had to help her. But she did everything the aides said, easy-peasy, with no arguing.

I think it was the scrubs. They looked official, not like family. There was something calming about that for my mom.

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I’m so sorry Spryte.  My dad hasn’t progressed that far but it’s worsening and we’ve been doing a lot of research on next steps.  At one point, he showed up at my home saying he was there to babysit our older son.  Our son is 17 and my dad didn’t seem to know about the younger son so it was like he was reliving a day from 15 years ago when our son was a toddler, before little brother was born.  

Definitely check for UTI.  And keep a log of big memory incidents which may be helpful to her dementia doctor + also qualifying for home based services or nursing home placement down the line.  

I am wondering if you can get a home visitor or other support (like elder day programs - tho group programs are probably not happening with Covid) to take some of the pressure off you?  Anything to lighten up your load?

A memory board is helpful, as is having some set routine.  For my dad, his daily routine includes mass (thankfully, he lives across the street from the cathedral which is his home parish) and it does seem to help him.  When masses weren’t happening due to Covid, things got much harder for him.  Now they are back but low capacity/no singing and everyone is wearing a mask.   

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My boyfriend's mother has Dementia and she wavers between good and bad days, although her good days are getting worse. Generally if she's having issues in the morning, it's because she didn't sleep well. She often cannot tell nighttime from daytime. Dbf (dear boyfriend) sits with her every morning, makes her breakfast, etc. He often works at her place. She forgot who he was the other day, but that was momentary. She's at the point where she's forgetting words and we often help her finish sentences. It feels like watching fireworks, you never know what synapses are firing correctly on a given day. Some days she's really coherent and talks more clearly and remembers more, other days are not so great. 

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Few years ago went through this with my dad, researched and visited several care facilities near his home (so his significant other could still visit easily) during a couple weeks I was able to be out there (I live several states away).  He lived with SO (she owned the house) and it took several months to convince her it was time for him to be in a safe facility - she still left the house to work daily, and he was starting to wander.  Neighbors could only do so much, and SO did not trust having any "stranger" hired to be in the house with him.  You are there with your mom, so she is safer, but it still is time to be investigating the options nearby for 24/7 care.  You might not need it for months or more, but preparation is important (plus figuring out finances - Dad was lucky enough to have $ for decent care. Not everyone is that fortunate).  It is very hard. Good luck.

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2 hours ago, Spryte said:

We have a monthly subscribe and save on Amazon for the tests.  I’ll run one today!

WAIT! What is this thing?  I had no idea such a thing existed!  My MIL lives with us and is slowly declining--not to the state your mother is at--but she definitely has good days and bad days but with C-19, I haven't wanted to take her out for testing......

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I am so sorry.  My MIL just went through this with FIL.  She kept him home until the end (He died in October) but it was brutal there at one stage and we begged her to put him in a home.  She absolutely refused that.  But she did not have a family or small she was trying to care for too at the same time.  Plus your health has been rough too lately.  

A few things I have read that help is a busy quilt.....different things sewn onto a lap quilt to keep their hands busy.   Buttons to button, zippers to zip, different textures.  Also a baby doll that she can hold.  If she is herself just show it to her like you 'oh look at this precious baby doll', and if she is out of it or anxious you might can say, 'mom can you watch this baby for a minute'.  YMMV

So sorry.  One thing my MIL learned was on the constant questions.....redirect.  Redirect, redirect, redirect.  Sadly, it is a  bit like we handle toddlers.  But it breaks our hearts.

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2 hours ago, Scarlett said:

So sorry.  One thing my MIL learned was on the constant questions.....redirect.  Redirect, redirect, redirect.  Sadly, it is a  bit like we handle toddlers.  But it breaks our hearts.

So my mil is starting to show these toddler behaviors. Yesterday she was mad at fil and closed her eyes. She walked around the house bumping into things and calling his name. They went to a health fair and he had to help her to the car and into the building, but she wouldn’t open her eyes. When practitioners came in, she would I open them and be compliant, but as soon as it was time to leave, closed went her eyes. He got her home and in the house, and she said she would open her eyes when she got upstairs. He said go on upstairs then but I’m not helping you. So she got down on her hands and knees and crawled through the house until she found the stairs, then went up them. When she got to the top she turned around to see if he was following her. When she saw him watching her from downstairs she closed her eyes again and felt her way to the bedroom. He went to do his own thing. An hour later she came downstairs and asked him to forgive her. She is starting to do these manipulative tactics, her goal is to have him do nothing but be by her side constantly. Sil keep telling him he is going to have to toughnlove it sometimes but he is not there yet.

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A photo album. Chocolate. Her favorite music from when she was young. Lawrence Welk on PBS Saturday night at 6. Smiles. Anything that makes her happy. Blown up pictures of her parents. She won’t remember why she is happy, moods last longer than memory. A baby doll to rock. Small work like washcloths or hand towels to fold. 

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1 hour ago, saraha said:

So my mil is starting to show these toddler behaviors. Yesterday she was mad at fil and closed her eyes. She walked around the house bumping into things and calling his name. They went to a health fair and he had to help her to the car and into the building, but she wouldn’t open her eyes. When practitioners came in, she would I open them and be compliant, but as soon as it was time to leave, closed went her eyes. He got her home and in the house, and she said she would open her eyes when she got upstairs. He said go on upstairs then but I’m not helping you. So she got down on her hands and knees and crawled through the house until she found the stairs, then went up them. When she got to the top she turned around to see if he was following her. When she saw him watching her from downstairs she closed her eyes again and felt her way to the bedroom. He went to do his own thing. An hour later she came downstairs and asked him to forgive her. She is starting to do these manipulative tactics, her goal is to have him do nothing but be by her side constantly. Sil keep telling him he is going to have to toughnlove it sometimes but he is not there yet.

Hey, I don't know how dementia-informed you are, but this is not necessarily a toddler behavior thing. Visual processing changes with dementia.  Literally, their brains do not perceive images the way healthy brains do.  If she is progressing in her dementia, visual changes may be happening and this is her (bad) coping mechanism for that.  She's turning off excessive stimuli to her brain.

I will also say that FIL is likely going to need breaks---real and significant ones---from MIL soon.  He will need to be around normal people for his own mental sanity.  He will also be reluctant to leave her, and will feel guilty for doing so.

You need to start having some big and serious talks as a family if those haven't started already.  It is all too common for male caregivers to give too much, or to let things slide too far.

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I hear what you are saying, but it was definitely an attempt to manipulate him, there have been several others in the last week. Things like hiding his keys trying to keep him from leaving, not letting him talk on the phone, lots of things I remember my kids doing trying to get my attention. Jealous of anyone or anything that has his attention, if you know what I mean.

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1 hour ago, saraha said:

I hear what you are saying, but it was definitely an attempt to manipulate him, there have been several others in the last week. Things like hiding his keys trying to keep him from leaving, not letting him talk on the phone, lots of things I remember my kids doing trying to get my attention. Jealous of anyone or anything that has his attention, if you know what I mean.

Living through it, up close and personal....DEFINITELY feels manipulative and toddler like.  My two siblings in law who were more on the front lines ( also the two who were still at home when their mother married him) often felt like their step father was faking it and manipulating everyone.  In hindsight they don’t really feel that way.  It really was just the disease.  

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Spryte, has she been evaluated for anxiety and/or depression? It’s pretty common w dementia patients. Mil had some pretty serious anxiety and it really worsened her quality of life. It’s complicated- like, she was so anxious about entering her home because she was afraid of what was inside. But the doc said it really might have been her brain’s way of coping with her feeling a loss of control over the things she no longer felt familiar with inside her home of 50 years.  In any case, it might be worth exploring.  
But like so many others, I suspect a UTI and/or dehydration. MIL really struggled with those things and they always presented as sudden cognitive decline. 

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5 hours ago, saraha said:

I hear what you are saying, but it was definitely an attempt to manipulate him, there have been several others in the last week. Things like hiding his keys trying to keep him from leaving, not letting him talk on the phone, lots of things I remember my kids doing trying to get my attention. Jealous of anyone or anything that has his attention, if you know what I mean.

Honestly? What you describe sounds less like dementia and more like a personality disorder or perhaps brain tumor or some other medical issue that may cause odd behavioral changes (just throwing some things out). My relatives with dementia could not hold onto a plan to manipulate someone in the way that you describe, because of the memory loss issues. The retreat toward being more like a child has looked very different from what you describe and has not been manipulative in that way. Of course, my experience has been with Alzheimer's specifically, and I'm sure some kinds of dementia may present differently than what I am used to.

Editing to add this link, which explains better what I am trying to convey. https://www.agingcare.com/Articles/dementia-behavior-manipulation-154554.htm

Edited by Storygirl
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On 4/22/2021 at 11:49 AM, Jean in Newcastle said:

Check for a UTI or any other kind of infection.  An abrupt change like that can often be caused by those. 

Thank you for this suggestion, I know this isn't my thread and I am sorry if I hijacked it, but I did some digging around and made an appointment for MIL today to have this checked out. I didn't know there could be a connection.

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On 4/22/2021 at 2:35 PM, VickiMNE said:

WAIT! What is this thing?  I had no idea such a thing existed!  My MIL lives with us and is slowly declining--not to the state your mother is at--but she definitely has good days and bad days but with C-19, I haven't wanted to take her out for testing......

Yes!  AZO is the brand we use from Amazon, but in a pinch, I’ll use store brand from CVS. I have her pee in a small, paper bathroom cup.  Hope it helps!

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18 hours ago, Annie G said:

Spryte, has she been evaluated for anxiety and/or depression? It’s pretty common w dementia patients. Mil had some pretty serious anxiety and it really worsened her quality of life. It’s complicated- like, she was so anxious about entering her home because she was afraid of what was inside. But the doc said it really might have been her brain’s way of coping with her feeling a loss of control over the things she no longer felt familiar with inside her home of 50 years.  In any case, it might be worth exploring.  
But like so many others, I suspect a UTI and/or dehydration. MIL really struggled with those things and they always presented as sudden cognitive decline. 

Thanks, Yes, she is being treated for a variety of things by a psych.  Depression and anxiety are two of them.  She’s been stable and happy for a few years now, but the dementia really kicked in after a traumatic event in her senior apartment.  She cannot remember the event itself, thankfully, but she has never been the same since.  Her neuro and psychiatrist are not terribly surprised, and say it can happen after an event like that. We had to piece together what happened with forensics and detective work, so we know it was bad.

No UTI this time.  I did check.  She’s been back to normal today, and most of yesterday.  I should always remember to check first.

Last time we had about 10 - 14 days between big episodes, so I’m hopeful that we will have another respite.  It’s so disconcerting when we realize we’re having a conversation with her and she’s just ... lost.

I have a small break.  Her twin came today, to take her for a visit.  Twin has cared for two Alzheimer’s patients at home, so I feel like she and my uncle can handle it.  Hopefully a visit to my mom’s hometown will be a good thing.  I almost canceled, but we all know that it could be even more difficult in the future, so we are trying.  They are all fully vaccinated.

So I have a week to make memory boards, and signs that might help, and make any changes to the house.

I’m reading each and every reply, with gratitude.  Thanks for sharing all of your experiences.  It helps.

I will see about hiring an aide again.  My mom made some bad choices - due to slow dementia onset, maybe? - and her finances are a mess.  She makes just over the amount to qualify for Medicaid ($80 too much, I think), but not enough to quite support herself on her own. She’s not even in the ballpark of being able to afford a memory care unit, sadly.  What I think we have to do is wait till her medical needs outweigh her small income and then apply for Medicaid.  Of course, I could be wrong - she can’t possibly live alone at this point, or afford the aides she would need to do so.  I might call our agency on aging again next week, to doublecheck.  Last time, the plan was to wait to apply for community care based Medicaid next summer.

Off to look for memory board pics, and reread this thread for more god ideas.

Thank you all!

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5 minutes ago, Spryte said:

Thanks, Yes, she is being treated for a variety of things by a psych.  Depression and anxiety are two of them.  She’s been stable and happy for a few years now, but the dementia really kicked in after a traumatic event in her senior apartment.  She cannot remember the event itself, thankfully, but she has never been the same since.  Her neuro and psychiatrist are not terribly surprised, and say it can happen after an event like that. We had to piece together what happened with forensics and detective work, so we know it was bad.

No UTI this time.  I did check.  She’s been back to normal today, and most of yesterday.  I should always remember to check first.

Last time we had about 10 - 14 days between big episodes, so I’m hopeful that we will have another respite.  It’s so disconcerting when we realize we’re having a conversation with her and she’s just ... lost.

I have a small break.  Her twin came today, to take her for a visit.  Twin has cared for two Alzheimer’s patients at home, so I feel like she and my uncle can handle it.  Hopefully a visit to my mom’s hometown will be a good thing.  I almost canceled, but we all know that it could be even more difficult in the future, so we are trying.  They are all fully vaccinated.

So I have a week to make memory boards, and signs that might help, and make any changes to the house.

I’m reading each and every reply, with gratitude.  Thanks for sharing all of your experiences.  It helps.

I will see about hiring an aide again.  My mom made some bad choices - due to slow dementia onset, maybe? - and her finances are a mess.  She makes just over the amount to qualify for Medicaid ($80 too much, I think), but not enough to quite support herself on her own. She’s not even in the ballpark of being able to afford a memory care unit, sadly.  What I think we have to do is wait till her medical needs outweigh her small income and then apply for Medicaid.  Of course, I could be wrong - she can’t possibly live alone at this point, or afford the aides she would need to do so.  I might call our agency on aging again next week, to doublecheck.  Last time, the plan was to wait to apply for community care based Medicaid next summer.

Off to look for memory board pics, and reread this thread for more god ideas.

Thank you all!

I am just so sorry.  I do remember the trauma she went through and sadly that kind of thing can speed up dementia that is already coming on.  I know my FIL had PTSD from Korean war and they say the combination of PTSD and Alzheimers can be particularly bad.    

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6 minutes ago, Scarlett said:

I am just so sorry.  I do remember the trauma she went through and sadly that kind of thing can speed up dementia that is already coming on.  I know my FIL had PTSD from Korean war and they say the combination of PTSD and Alzheimers can be particularly bad.    

Oh, I’m so sorry that your FIL went through that. It’s heartbreaking. It has to be so confusing for them.

Yes, the detective felt my mom was targeted because it was known that she was beginning to have memory issues.  Nothing major, but enough.  So her dementia was beginning, but definitely was exacerbated by the trauma.  She used to be such a night owl, but now I make sure to help her to bed early.  She gets anxious after dark.  Her doctor says even though she doesn’t remember everything, her body remembers.  Makes sense. She actually mentioned today that she often thinks about my finding her the way I did, and worries how it affects me.  Makes me so sad. And still mad, too, about the event itself.

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4 minutes ago, prairiewindmomma said:

This makes me wonder about teaching her to tap in the evening also—modeling tapping her hand to her chest or doing some trauma release exercises....

I had forgotten about the night/trauma connection for her as well.

Oh, what a good idea.  I don’t know much about techniques for this, so if you have handy links, I’d love them.  I can also Google, so don’t feel you have to hunt them down.  
 

It’s a very good idea for her!  Thank you.

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26 minutes ago, Junie said:

(((Spryte)))  I am so sorry that you're going through all of this. 😞

Thanks, Junie, you’ve always been so kind and sweet about my mom.  I really appreciate the support!

 

 

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11 hours ago, Spryte said:

Yes!  AZO is the brand we use from Amazon, but in a pinch, I’ll use store brand from CVS. I have her pee in a small, paper bathroom cup.  Hope it helps!

Seriously, BIG THANKS!  That will make for one less worry (said after a particularly rough day (for me!) yesterday).

 

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As the older person in the rehab facility, one thing I have to offer is make sure they have checked her vitamin B levels. When I showed up at the hospital I had some serious cognition issues: my speech was slurred, I was losing words, I couldn't answer simple questions that I knew the answers to and was having short term memory loss. My vitamins B levels were basically zero and it was damaging my nerves. after massive B replacement, my cognition was the first thing to return. I haven't had any more episodes like that since I have been in the hospital. Also majorly important issue hydration and nutrition. I was eating at least one very healthy meal a day and drinking as much as I could but when I got to the hospital I was seriously malnurished and dehydrated. Once you reach a certain level of dehydration you sense of thirst disappears so you kinda have to prime it to get it going again. Now I am drinking about eight cups of water a day. And finally yes watch out for UTIs. I woke up yesterday not feeling well, just a little tired, fatigued and weak. Sure enough a UTI and I am now on anti-biotics. One other thing that I have not had to deal with but that doctors are really watching out for is pneumonia. Have her sleep on an incline. If you don't have a hospital bed look into buying a bed wedge and then staying inclined or sitting  up as much as possible. Also try to utilize as many helper items as you can and recruit helpers so it doesn't affect your health as much. So sorry you are going through this. Wish you the best of luck as things progress.

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23 hours ago, Spryte said:

Oh, what a good idea.  I don’t know much about techniques for this, so if you have handy links, I’d love them.  I can also Google, so don’t feel you have to hunt them down.  
 

It’s a very good idea for her!  Thank you.

I am crazy busy for the next few weeks, but wanted to toss out some terms for you:

"Trauma Release Exercises"---you might find these helpful for you---caregiving is intensive---but these may be better to do when she is cognitively aware.

"Somatic Release" is another search term.

"EFT tapping" or "trauma tapping" is another one.

Tapping, I think, is easier for those with cognitive burdens.  She may no longer be able to connect with her body when her cognitive mind is under stress. Editing to clarify:  She may not know how to point to her elbow or where her leg is.  Parts of her body may be disconnected from her in her mind. I'm including this video mostly for you to model for her....don't be surprised if you have to guide her for several weeks to get her to develop enough muscle memory to get over the cognitive gaps.

Also, trauma release can be triggering for people. You may want to do securing exercises (hugging, gentle tapping) for a long while before you do formal "trauma release exercises".

If I get a chance to pop back and add some more links, I will.  

 

 

Edited by prairiewindmomma
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I haven't read all the posts but I agree with @drjuliadc about Dale Bredesen's book.

If you are so inclined, you could try using a VieLight but it might be tricky at this point. Some people have really good results with it and others don't.

The area in the brain that processes music is usually not damaged by Alzheimer's (not sure if you have that diagnosis). You could try playing the popular songs from the time when she was young and note if any lift her spirits.

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36 minutes ago, BeachGal said:

 

The area in the brain that processes music is usually not damaged by Alzheimer's (not sure if you have that diagnosis). You could try playing the popular songs from the time when she was young and note if any lift her spirits.

Music really helped MIL. Once we found that it calmed her, we’d use it when she was anxious as a way to distract her from her worries- for instance, when she’d worry that there were ‘bad guys’ outside, we’d put on music from when she was a young bride and it was often able to calm her. But if we used it too often it backfired- she’d get stuck in the past.  But gosh it’s worth a try because when it helps, it feels SO good.

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17 minutes ago, Annie G said:

Music really helped MIL. Once we found that it calmed her, we’d use it when she was anxious as a way to distract her from her worries- for instance, when she’d worry that there were ‘bad guys’ outside, we’d put on music from when she was a young bride and it was often able to calm her. But if we used it too often it backfired- she’d get stuck in the past.  But gosh it’s worth a try because when it helps, it feels SO good.

Yes, it makes good sense to use it or at least give it a try.

Just as an fyi for anyone reading, choline, which is used to make the neurotransmitter acetylcholine, may protect against developing Alzheimer's and dementia later in life. Many people need far more than what is recommended. Everyone in our family needs large amounts. It's genetic.

https://www.sciencedaily.com/releases/2019/09/190927122526.htm

https://www.health.harvard.edu/staying-healthy/a-possible-brain-food-that-youve-probably-never-heard-of

https://chrismasterjohnphd.com/tools/2019/07/27/much-choline-eat-genetic-calculator

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@Spryte I have another tip that might be worth trying -- two supplements. One is magnesium threonate, also called Mag-T or Mg-T. It must be threonate because it is able to cross the blood brain barrier where it can reach the brain. The studies are interesting. The other supplement is theanine.

The brands my husband and I take to help us sleep more soundly are Life Extension's Neuro-Mag and Now's L-Theanine, 100 mg. For sleep, we take just one capsule of each about an hour before sleeping. They have worked very well especially for my husband who has had interrupted sleep for years.

For memory issues or prevention of cognitive decline, I believe they used 2 capsules of magnesium threonate in the morning and then the one capsule before sleep. I don't recall if they also added theanine.

Your parents and inlaws might be trying this already, but if they aren't, it could possibly help. Thought I'd pass it along.

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