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Mom not liking caregiver
GuitarGirlLaura
Posted: Tuesday, September 6, 2022 6:54 PM
Joined: 9/5/2022
Posts: 7


This is my first time posting. My mom is about two years in to having Dementia. It feels like it's moved beyond mild and is it some middle stage. My Dad passed away in Jan. 2021 and that's when things got really hard. We just moved my mom from Florida to Chicago area in May to be closer to my sister and I, in senior living (independent). She was in senior living community in Florida for 2 years and got involved with fitness classes (even after my Dad died) and made a few friends. Now she sits and watched TV all day and will never go to dining room on her own or do anything on her own. We've been watching her decline and it feels like it's moving fast. She's still mad she lost her license a year ago. She's been confusing night and day and that is making me nervous. We don't know what she eats..I'm pretty sure she forgets to eat Doesn't cook anymore.  We've just hired a caregiver two mornings a week. The first one took my mom on out to run her OWN errands (the caregiver's errands), taking my mom to a phone store to sit for hour and a half while the caregiver bought a new phone, on her second day. We decided to work with a different agency after that, so now we have someone new who has been there 3 times. My mom is kind of mad at me and says she's doesn't need anyone. She's not really bonding with her. I told her the caregiver is going to stay at the community for her shift (not drive you around) because we were burned with the last experience). I explained she can go on walks with her, play a game, take her to an activity, to dining room for lunch, cook for her, remind her of her meds, etc.  My mom doesn't want to do any activities. She says she's happy in her apartment. But then will complain that she's trapped there, cooped up all day.  I've always enjoyed spending time with my mom but the past few weeks have really tried my patience. I know she's struggling. Is it normal to go through a bunch of caregivers?? I don't want to be THAT family that does that. But my sister and I can't be there everyday. My mom forgets that we have jobs. I've been going more than twice a week (1/2 hour drive in traffic) and it's talking a toll on me. My sister too. Maybe we just need to give it more time to bond with the caregiver? Any advice is appreciated. I know this will only get harder. I set up new doctors for her here and haven't been able to get a neurology appt until January 2023! Her neurologist in Florida never said the "word" dementia when I flat out asked him if that's what my mom has, and just said "memory loss", but it says it in her file. But I have no idea what kind of dementia. I wish I could get her an appointment sooner!
​fesk
Posted: Tuesday, September 6, 2022 8:09 PM
Joined: 1/11/2013
Posts: 229


Hi GuitarGirlLaura. I'm sorry you are going through this. 

  
Based on your description, it seems to me that your mother needs more oversight than senior independent living with an occasional caregiver. One thing that was extremely helpful to my mother over the years was routine/structure. I always kept a consistent routine. It provides a sense of security. With the loss of your father and the move, your mother has lost everything she was familiar with. She is out of her surroundings and is having difficulty coping. Try to work now to establish a new routine. It does not sound as if she can do this on her own. I'd recommend looking for a facility that can provide this structure or getting a daily caregiver that can spend the entire day with her. You may see an improvement when that is done. You can also look into adult day care to provide routine/consistency and then utilize a caregiver when she is home and in the evening.

 

As for the caregivers, it may take a while for it to begin working or you may need to continue to change caregivers until you find the right one. Give it some time and, if it isn't working, change. If it's not a good fit, it's not a good fit. 

    

Is your mother taking any medication to help with the Alzheimer's/dementia? 

   

Others will be along to offer advice. I'm sorry this is so difficult.

 


GuitarGirlLaura
Posted: Tuesday, September 6, 2022 8:37 PM
Joined: 9/5/2022
Posts: 7


Thank you, Fesk. Yes, we've been talking to her facility about the memory care unit there. Apparently, you can only go to assisted living if your mind is in-tact. At least that's what they told us, so memory care would be the next step, which I know would be a drastic change for her...another change, but if we feel she's not safe, we may ask to have her evaluated again (they did that when she moved in). It's one room, rather than a whole apartment. They assured us they'll have a spot for her. We are trying the caregiver route first. Yeah, maybe it's not the right fit...but we do feel she needs extra care. She has been on a memory patch for a year and half but just stopped it a couple of weeks ago (due to bathroom issues). I keep thinking, was that a bad idea? But I have been skeptical if that patch has ever helped her memory. The one doctor I haven't been able to get her into quickly here is a neurologist. Driving me crazy. They are all so booked with appointments, can't get in till January. It's a hard call too, because a caregiver is so expensive and out of pocket, where as the memory care will mostly be the same price as what she's paying now, included in her living there. Good idea on the consistent routine, thank you.
dayn2nite2
Posted: Tuesday, September 6, 2022 9:29 PM
Joined: 6/20/2016
Posts: 3302


She is definitely beyond an independent living situation and most likely beyond assisted living too.  Memory care is going to be the correct level, and then the additional caregiver won’t be needed.
Quilting brings calm
Posted: Tuesday, September 6, 2022 9:37 PM
Joined: 10/16/2020
Posts: 1178


I can’t tell from your post whether the assisted living center did an evaluation and the result was  she needed MC or whether they just casually mentioned assisted living might not be suitable,  if it’s the latter, you might ask for an  evaluation.  

I also can’t tell from your post what stage your mom actually is in.  Does she dress herself and choose appropriate clothing?  Does she feed, toilet  and shower herself appropriately?  If so, she’s probably still in mild dementia stage   Even so, independent living is probably too stressful for her, especially on top of the move.  A change like that can really knock them for a loop.  She may also be anxious and depressed, which affects their cognitive level. 

You might take her to an urgent care place and ask that she be tested for a UTI since she’s behaving differently the last few weeks,  she may not be drinking enough water.  The common  symptom of a UTI in the elderly is an increase in confusion and brain fog.   

It’s really hard dealing with a person with dementia and trying to work full time and have a family.  Several of us here  retired a couple years earlier than expected due to the stress  I’m not saying you should- not everyone has that luxury.  

 

  


​fesk
Posted: Tuesday, September 6, 2022 9:39 PM
Joined: 1/11/2013
Posts: 229


Are you able to speak to the doctor that prescribed the patch? Maybe he can recommend an alternative or, perhaps, there is something that can be done to alleviate the issues it was causing. Maybe that would help until she gets to the neurologist appointment. So frustrating that you can't get an appointment for that long.

Also, when I said if it's not a good fit, I meant don't worry about changing a caregiver that doesn't seem to be working well with your mom. Give it some time but then give the agency feedback to see if they can find someone who may work out better. It's a common issue.

Best of luck.


GuitarGirlLaura
Posted: Tuesday, September 6, 2022 10:16 PM
Joined: 9/5/2022
Posts: 7


Thanks for your post, Quilting..Yes, she dresses herself. Makes her bed every morning. If I ever see that bed not made, I'll know something is really off! We're not sure on how often she showers and her eating is all out of whack. Thanks for reminder on the UTI...I suspected that a couple of months ago, and took her to get tested and the test didn't "take"..not enough pee. I should have had her test again. I don't know if I can get her to go test again..she was pretty mad at me thinking she had a UTI (normally she's a pretty sweet, easy going person). 

I think we are going to have her evaluated soon by the place she lives. I don't want to even spring that on her but it's looking like it's going that way. I actually think she'd do well in assisted living, but apparently at her place they told us your mind has to be "intact" for assisted living, and you move there if you have a physical issue...and memory care would be the option for her. I'm not sure what stage my mom is in. Her old neurologist in Florida was not great and never gave us any indication about exactly which stage she is in, and they were super hard to deal with. Plus she doesn't live in Florida anymore. I'm gonna hope for the best with the caregiver coming tomorrow, and hope it goes well (4th visit).


May flowers
Posted: Wednesday, September 7, 2022 7:35 AM
Joined: 4/9/2021
Posts: 710


Laura, when we moved my FIL to MC, he could do all his grooming (with reminders), toileting, carry on a short conversation, feed himself, and was physically very healthy (could walk miles a day). He could even call us on his KISA phone.

The reason we went the way of MC is that had we done AL, there is no doubt he would have wasted away in his apartment due to inertia (discussed in another thread). Because he was encouraged to come out of his room for meals and activities in MC, that didn’t happen. The group was always together in the commons area or courtyard and some were participating, some were hanging out and some were sleeping. He had a walking buddy there and there is no telling how many miles those two logged, lol. The higher functioning residents gravitate towards those at their level or staff. 

He for sure would have told us he didn’t want to go, but he did well, maybe even improved, at least mood-wise. We were at a crossroads at the time we placed him - whether to bring in caregivers or MC and the MC was the right call for him at the time (he’s back home now for the final stage though).


harshedbuzz
Posted: Wednesday, September 7, 2022 7:46 AM
Joined: 3/6/2017
Posts: 3810


Hi and welcome GGL. I am sorry for your need to be here, but glad you found this place.

A couple of thoughts. 

Unfortunately, most neurologists specializing in dementia and memory centers will have a considerable waiting list. Six-months seems to be the norm where I am, and I live in a very well-served are in terms of medical care. It's frustrating, but in a sense even if you do get definitive answers, it isn't going to change the steps you and your sister need to take now. 

I hear you on the frustrations around the neurologist in FL. My parents lived in FL part of the year for over a decade and the doctors were a real mixed bag. When I moved them closer to me, I had to assemble a new medical team and I was only able to get medical records from about half. Mom's new docs weren't successful either. In your shoes I would try to get the previous doc's records or attempt to access them via a patient portal-- it is very, very common for neurologists to not use the words "Alzheimer's" or "dementia" with their patients, but the records may indicate a diagnosis and what tests were done which may offer some clarity.

I agree with the others that she needs an enhanced level of care at this point. It's likely your mom's dementia has progressed since FL-- time, the move and your dad's passing all could have impacted her baseline. IME, FL is a really easy place for seniors to build a social life-- everyone is outgoing and looking to connect. I think it's because most folks came from somewhere else. I moved my mom (who does not have dementia) into a lovely 55+ community near me in the hopes that she's make friends, but the reality is that the people who live there are just downsizing and don't need to make new connections. I take her to the pool in hopes of meeting people, but the rare individual who strikes up a conversation talks to me as I am the typical age of a newer resident.

The other piece is that if your mom has dementia (or any cognitive shift) and is attempting to socialize with seniors who have not, it won't go well. IME, they'll quickly sense she can't keep up with conversation or activities and will, at best, avoid her. One of my aunts with dementia went into an AL setting for a time when MC was a better fit but she couldn't afford it. It was awful-- the other women went all meangirl on her. Nobody should have to re-live middle school in their 90s.

In terms of HHAs, it seems like mom needs 24/7 at this point which might tease out some better candidates. The better people in caregiving tend to want fulltime gigs leaving the rest of us to cobble together care from a roster of folks who aren't as talented. That said, expecting mom to "bond" with someone in the space of 3 visits is just unrealistic. It takes time to make the connection, especially given that your mom has less bandwidth now to do the work of making a relationship. A lot of folks who hire a caregiver, hand over care gradually. While it's frustrating to pay for 5 days of care and not get a break, it will give you a better sense of how things are really going and you can help introduce the HHA to your mom's routines, likes, etc. This also allows you to introduce the person as a friend stopping by instead of her sitter.

You mention that this will get harder. Harder is a relative thing. Dementia is life-limiting and progressive, and your mom will continue to lose more skills and memory. But, TBH, this middle stage where a PWD has just enough self-awareness to require fiblets and workarounds to keep them safe because anosognosia prevents the from appreciating how impaired they've become was the most difficult stage for me with my challenging-before-he-had-dementia dad.

Good luck.

HB



mommyandme (m&m)
Posted: Friday, September 9, 2022 4:19 PM
Joined: 2/16/2020
Posts: 748


Hi, sorry for your struggles.  My first thought is what was in the patch?  Could just taking it off trigger some problems.  My moms been on Memantine for a long time. When she was having “pill burden” issues, it was a med I considered removing.  When I began titration her off of it I saw some negative changes like she wasn’t able to follow directions as well.  She might take a misstep while walking in weird ways.  I put it back in and those things improved.  Again, I started the titration off of it a few months later, same result.  Now there aren’t many things she needs to do.  I’m removing it. Still I wonder if her confusion with what her fork is, for example, could be exacerbated because of the meds titration, I’ll never know.  

I guess my point is maybe a sudden removal of the patch might be a problem? 

Also, I didn’t expect Memantine to help her memory but I do think it helped in some ways, often physically.  

I hope your day is peaceful in some way. 


Rescue mom
Posted: Saturday, September 10, 2022 10:09 AM
Joined: 10/12/2018
Posts: 2709


IME (mother, in various levels of facilities in 2 states) many/most people with dementia/cognitive issues do not do well in assisted living. So many ALs are set up more for “physical” problems and do not provide the kind of help a person with cognitive problems needs.

Somebody here once said  if a person can and will ask for help, AL might be good. But if they cannot or will not ASK for help—they don’t really know they need help, or if they just want to sit and do nothing—then they need memory care. (If I read it right, that’s what your place is telling you now.)

That may be over-simplifying or generalizing, but it seems to often be a good guideline.

And as HBuzz said, many AL residents will not “socialize” with someone who’s more cognitively impaired. It may be mean, but that does happen.

Now that my DH has Alzheimer’s, I’ve been through the wringer on home aides. I strongly think it takes time for many PWDs to get used to the aide. I don’t even expect “bonding,” just tolerate and accept. And yes, it may take a few before you find a good one. I went through 4 over a few months (most quit because DH was so difficult, but that’s another story)

And, as said, I never told him it was a caregiver for him; that was a dealbreaker, nonstarter. . The idea that he needed a babysitter was infuriating, although its exactly what he needed. He was always told the aide was a helper for me.

Maybe tell your mom it’s a facility staffer there to do (something the facility does)…just not a caregiver for her. Although it may be too late for that if she remembers the person…

I had to have the 5th aide here maybe 8-10 times before DH was ok with her—not welcoming, but just ok. Yes, that was a lot of time when she was not doing what I needed her to do. But that was the trade-off for the long-term benefit of getting him used to her.

 


Rescue mom
Posted: Saturday, September 10, 2022 10:20 AM
Joined: 10/12/2018
Posts: 2709


Sorry, but meant to say…complaining of nothing to do, while refusing to try any activities or actually do much of anything, was something my mother did for years. 

Her caregiver, who was excellent, and her MC could get her out, she could do or go to all kinds of activities, but nothing ever suited. It was an effort to get her, she may or may not have tolerated or done it, but she never really enjoyed it. I think I read here that I had to do what finally happened.: accept that there was no way to restore her abilities and make her happy. She was cared for, and safe. We don’t always get “happy” with dementia.

My DH now is in that mid-stage Harshed Buzz wrote about in her last graf. It absolutely is exhausting, and frustrating. So many fiblets and work-arounds needed….there is no way on earth I could do it while working (I did before). I don’t know how anyone can do that long, without a lot of outside help. 


SunnyAB
Posted: Saturday, September 10, 2022 11:50 AM
Joined: 9/8/2022
Posts: 3


It sounds to me like your Mom needs more care and some of your expectations of her and the situation may be unrealistic. 
Your Mom is confusing night and day. you don't know what she's eating and you suspect she's missing meals. And a caregiver is coming in twice per week to remind her to take her medication. The ability to manage medication consistently is one of the first skills to go. Unless she only needs to take medication twice a week, this would be one of my top areas of concern to be addressed asap, along with daily meal preparation. If a daily visit from someone to ensure she takes meds isn't in the cards, there are electronic options that you can couple with a phone call and maybe even a camera.  
A caregiver has visited your Mom 3 times but your Mom hasn't "bonded" with her. I consider it success if your Mom TOLERATES the caregiver and the caregiver does what he or she was hired to do. The caregiver needs to be provided with a list of daily responsibilities and they should report what they did at the end of each shift. One item that should be on the list is cooking meals, including extra portions to be frozen for later use. If companionship is one of the duties, then provide activity ideas. Hiring an agency does not relieve you of this responsibility, unfortunately. Having plenty of tasks for the caregiver to do that don't require the caregiver to be right by your Mom's side at all times, is one way to smooth the transition and help your Mom adjust to this new norm. 

 

 

 

 


 


GuitarGirlLaura
Posted: Monday, September 19, 2022 10:43 PM
Joined: 9/5/2022
Posts: 7


Thank you for your thoughts here. Things are going a little better with the caregiver. I think my mom is getting a tiny bit used to her. We still get in arguments about it, but she's not refusing the help and it's giving it a try.
GuitarGirlLaura
Posted: Monday, September 19, 2022 10:45 PM
Joined: 9/5/2022
Posts: 7


Thank you. My mom seems to be doing ok without the memory patch. I honestly don't think it helped her memory at all. One less thing for her to have to remember to do each morning.
GuitarGirlLaura
Posted: Monday, September 19, 2022 11:03 PM
Joined: 9/5/2022
Posts: 7


Thank you. Yeah I'm not sure what stage she's at...somewhere in the moderate stages I think.  Yes, she can dress herself, bathroom, all that. Not sure how much she's showering. That turns into argument. And cooking, she's almost stopped completely and I think she kind of forgets to eat and doesn't know how to put a meal together.

She's is going to 3 fitness classes a week now which she really enjoys and loves the teacher. But I do have to remind her each time, right before, to walk over to the fitness center, which is luckily only 50 feet out the door. Short term memory seems like it's 80% gone. She seems to do better on the 2 days the caregiver is there, I think the routine is good for her. Even though she still complains about it. She seems more confused on days she's sitting in her apartment all alone.  It gives me peace of mind when caregiver is there, or my sister is there. I was going almost every other day for months, and now I go visit twice a week. My sister visits at least one a week, sometime twice. 


JJAz
Posted: Tuesday, September 20, 2022 12:38 AM
Joined: 10/21/2016
Posts: 2824


Some of Mom's behavior might also be attributed to depression.  Between changing life circumstances and the physical shrinking of the brain due to dementia, many dementia patients benefit from an SSRI.  Ask your doc at the next visit.
CanyonGal
Posted: Tuesday, September 20, 2022 6:00 PM
Joined: 5/22/2021
Posts: 12


We hired a caregiver - a "companion" - to come a couple of days of week to assist with bathing and some household chores. It could literally take the entire morning to coax mom into taking a shower and then styling her hair. So, the caregiver became a "friend" in her eyes, like someone she would visit at the beauty shop. We ended up increasing the caregiver's hours after mom had a nasty fall and it was obvious, she needed more oversight. Anyway, call the caregiver her companion.

After the fall, my mother went to assisted living - not independent senior living. An assessment by the facility was made to see basically if she could walk (with her walker) and if there were transfer issues - they are seeing if residents can make it on their own to the dining area; they were aware of cognitive issues (everyone in the assisted living had some type of cognitive decline - that is why the majority of them are there!). It took me walking down with her to the dining room and going to BINGO to get her in a routine. Some of her friends would stop by once a month. I eventually hired a caregiver to take her shopping or visiting to give her a break from Assisted Living, but the caregiver burned out after a couple of months (as mom can be difficult).

We recently had to move her to memory care due to continued memory loss and cognitive functioning. It was a really hard move to make the change. She wants back to assisted living but she cannot function there anymore.

I had a speech therapist test her when she was at rehab. We started with a neurologist after the fall, and he said she just had low IQ! What a joke! My mom was an accountant.  A nurse said fire him, he is obviously wrong! Since then, testing at different agencies (speech therapists and doctors) show moderate dementia. (Incidentally, she is in Florida too.) So, although a neurologist should be able to diagnose the level of dementia, he/she is unlikely to say that in front of your mom. It will be on the paperwork. Her PCP should be able to do the Mini-Mental State Exam (MMSE) every time she goes in for her 6-month Medicare appointment. If not, ASK because it will give you a baseline.


 
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