Struggling with providing care for my very willful Mom

Reneé H.

I'm new here, but desperate for help with handling these difficult things, and feeling like I'm really botching this pretty badly.

A little over a year ago, I moved in to look after my Mom, who was diagnosed with Alzheimer's when she was still somewhere in the middle stages. My family was never good with communication or sharing things, and she was apparently masking very hard for a while, so I didn't know about any of it until living here has put things into sharper focus. But, she remains convinced that she needs no help, that she is fully independent and capable. This is not the case. I have had to take over all meal prep (including breakfast cereal, which she can no longer get on her own, even if the dishes and box of cereal are arranged on the countertop for her, and she is also no longer able to dish up her own dinners, or dispense a can of soup into a microwaveable dish to heat it up for dinner when I was still able to leave her at home alone for a few hours), and all medication dosage and timing management. I've had to manage changes to her condition as they arise and manage all deliveries of groceries and other supplies as needed, as well as schedule all medical appointments and handle ride-share transportation to and from. As her condition has progressed, I have had to come to terms with the fact that I can no longer safely leave her at home alone for a few hours anymore, and have arranged for a home healthcare aide to come in a couple evenings a month so I can get a break and get out of house for a little bit. But, I still feel like I'm running past empty. Familywise, I am on my own in the local sense, but have at least some emotional support from my half-brother and my sister-in-law several states away.

However, it became necessary to switch the aide providing this occasional respite care, and the last time we had that aide in was a week ago today. Mom spent the whole evening in her room and refused to come out or to respond when spoken to. The cause is related to hopes I'd had that the aide might be able to help Mom with bathing, because that task was becoming difficult for Mom to do on her own. But, Mom only was amenable to the assist from an aide in the abstract, not in reality, so when the aide had previously attempted to get Mom ready for bathtime, Mom got very angry, agitated, and deeply resentful. Her memory issues do not present in typical fashion, so there are things she definitely remembers for a lot longer than one might expect. But, I have been unable to engage her meaningfully in any activities like puzzles or games or coloring. She's amenable to ideas in the abstract, but not when they become concrete, so planning things for her has been a major challenge.

But, now, today, she has also become unresponsive to me. I knocked on her door, asking her if she wanted to come out, have some cereal, and her vitamins, maybe watch a show she likes, but she only answered by pressing against the door, to hold it shut. She's come out a couple of times to go to the bathroom, and I left her pills in her room when she did, one time. I've asked if she'd like to come out for dinner, but is still unresponsive. I can hear her in there, and she's moving around, so I know she's at least physically okay. I just have a feeling that I've really messed up here and I don't know if I can fix this. I know she resents being helped on things, but also appreciates it when I do cook and handle the household things. I've been doing my best to provide her with manageable options so she feels like she has a choice in things, but have had to take a harder line when it's time to go to the doctor's office or the dentist. The dichotomy has been a very hard ride, because for my own part, it's running up smack against my own difficulties with all this due to my being on the autism spectrum, and probably having undiagnosed ADHD into the bargain.

I don't know how to do this. I feel like I'm trying my best, but it seems to me that I'm clearly not. I am struggling with how I'm not supposed to explain things, except that has proven an absolute necessity in many situations. Her doctor has spoken to me about how her Alzheimer's is presenting is very unusual, in that her problem-solving abilities have remained largely intact, while her ability to actually perform certain daily tasks has gradually ebbed away.

How can I manage these behaviors? Or did I really mess this up? Is it too late to try another tack with these behaviors?

SusanB-dil

Hi Renee - welcome to 'here', but sorry for the reason.

You are beating yourself up for trying your best. Take a deep breath. She is fortunate to have you watching out for her. ((hugs))

Each of our LO is a little different. Yes, it is unusual to still be able to figure out some abstracts, and no longer be able to do any ADLs. But… If you've met one PWD, you've met one PWD.

Do tell her doc about the agitation. There may be a medication adjustment needed.

Also, look into adult daycare a day or few a week so you can get some respite. We called it the community center. (You may have to get the agitation down some)

Maybe check Teepa Snow or Tam Cummings videos in the meantime, to see if there's a different idea to help you.

If she is locking her door, you may need to change the knob to one that doesn't lock… for her safety.

At the least, until the agitation is lowered, could you get someone to stay an hour or two so you can get out? So that YOU don't get burned out.

Emily 123

Hi Renee,

Welcome & sorry you're here, but I can reassure you that what you're seeing is not unusual. It sounds like you've been a great caregiver to your mom. I agree with SusanB that a visit with the doctor would be excellent-they can rule out a UTI and prescribe her something to help her manage any underlying anxiety the disease can cause.

It's pretty usual that reluctance and resistance to showering/bathing occurs. You may just need to let her have a quiet night to let go of her emotions and not revisit the bathing yet. Many of us have gotten to the stage where wipes become the daily go-to. You have to pick your battles.

What may be happening is that your mom is experiencing anosognosia. When the disease removes her ability to recall even very recent events she'll also lose her ability to be aware of the changes the disease is causing. That means she won't be aware that she needs assistance. Because the dementia erases access to newer memories, she'll be operating off of older ones where she was functioning just fine and you were still in a parent/child dynamic, not one of a caregiver, and you certainly weren't insisting she take a bath or her meds. The situation may not make much sense to her and may make her anxious.

If the person with dementia has a lot of emotion or confusion around an issue (and modesty and autonomy are both things we tend to protect) that emotion can be something they hang on to. They might not recall a specific incident, but they know a feeling. And if you're the caregiver that's been trying to anticipate their needs all day? You'll be the one to catch it, because you're there all the time. And that's so frustrating when you're trying so hard.

I'm sure you've seen these two pdf's, but they're excellent, and the "Understanding the Dementia Experience' can help you understand how the physical changes to the brain show up as behaviors. Alzheimer's will tend to follow the order of losses seen in the Tam Cummings handout. You may not see every behavior listed, but the progression is pretty consistent. If there's mixed dementia then the progress might be different. People do tend to hang on to some skills or traits longer than others, and it's unique to each person.

Tam-Cummings-LLC-Handouts-2.pdf

understanding-the-dementia-experience.pdf

I also liked this video

https://www.youtube.com/watch?v=6cZTgG6kDjs

Hang in there!

Reneé H.

There's no lock on her door, but I couldn't open it without upsetting her a lot more today, so I backed off. That's not been an issue before. I can talk to the doc, though. She's got an appointment on Monday to take care of a sore. There was some discussion of adult daycare a while back, but she vehemently rejected that on the spot and in that very moment, with a shocking level of lucidity, so I pretty much know if I try that, it's going to get a lot worse, quick. It's one of the reasons I have her aging in place, with no plan to change that until she no longer knows where she is. She's very much a person of her own familiar space, and still profoundly misses a house we moved out of back in 1975.

Activities have been difficult, as about the only one I've been able to engage her attention with is TV shows and DVDs. Our care service provider does minimum 4-hour blocks and acclimating her to even those has already been pretty rough and really not going so well. Our neighbor has offered to help, but Mom reacted very poorly to even the suggestion. To be fair, this neighbor is…..a lot. Personality-wise. So, I get it. I've been trying to find more options that don't upset her, but those are proving thin on the ground. I'm so exhausted. I have the arrangements in place to get out at least every second and fourth Friday of the month. Plus a few hours on the third Thursday of the month for another thing. But, at this point, I'm unsure I can get enough breaks to make up for what I actually need, because what I need isn't proving very realistic. So, I carry on, because I have to.

Unfortunately, I came into this situation in some stage or another of some sort of burnout already. Just the consequences of me being me and dealing with what I've had to deal with.

ETA: She still won't come out. And she still won't answer me when I knock.

https://alzconnected.org/discussion/comment/278829#Comment_278829

Reneé H.

https://alzconnected.org/discussion/comment/278840#Comment_278840

The bathing issue with the agency caregiver was about a month ago. I was able to get her to take a bath a couple of weeks ago, so I think she really objected to a relative stranger making the move to help her on that. But, she's been resistant to baths in general. I addressed all her safety concerns already. There's a bathing stool for her to sit on and a real big, secure, bathmat in the bottom of the tub for sure footing. I also swapped out the old shower head for a hybrid unit that has a handheld component. I set the dial on it to direct water only to the handheld showerhead unit. And there's a nice, big bathmat on the floor with plenty of room to move around on while drying off.

As for the rest, she was fine with me helping with all the other things all along. It's just suddenly, there's this brick wall there and I don't really know where it came from or how to work around it.

There's an appointment with her doctor this coming Monday, but if I can't get her to come out of her room, or even speak to me, I don't know how on Earth I'm going to be able to get her to even go to that appointment. It's about the nodule she has on the back of her leg that's to be removed for her and biopsied. At the time she did say she wanted it gone. I've tried to keep her in the loop on things so she doesn't feel like she hasn't got choices.

Unfortunately, the situation I'm dealing with doesn't seem accounted for in the handouts. I've gone through them, and that's kinda why I'm off a cliff here. I'm not hearing her talk about the past at all, but then, she'd never done that anyway, so there are large sections of it that I was never aware of. I don't know how to distract someone through a closed door, and when I opened it yesterday, she royally chewed me out about it and went even more unresponsive.

The only thing I do know about is that she isn't recognizing herself in the mirror anymore, but keeps taking to and about those reflections as her "friends" and gets upset sometimes about having to walk away from them. I have tried the distraction of letting her know that they're in the living room, too, because the credenza in there has a large mirror on it, but that doesn't seem to work anymore. That's the closest thing to an answer I have. But it also leaves me without much of a way forward. She can't lock her bedroom door, but can and does lean up against it if she doesn't want me to open it, so the only thing I can do is maybe wait this out, but I'm not currently seeing an endgame on that one.

H1235

Many with dementia have anosognosia. This is an inability to recognize their own symptoms. She is not in denial, the dementia won’t let her see her symptoms. There is nothing you can do to convince her of her symptoms and trying will not go well. We want to do what is best for our loved ones and not upsetting them is definitely important. I have gone to extreme lengths to avoid upsetting mom. But at some point there has to be a limit. In my opinion there comes a time when you just let her get upset. I know it sounds awful, but I eventually discovered that mom was probably going to be mad no matter what I did. You need help. In my opinion you need your life back. My mom told me her worst nightmare would be to live with me. I wasn’t going to do that to either of us. Of course she thought she was perfectly fine to live alone in her home (she is not). Unfortunately she is in a nursing home now. Don’t let her dictate her care, that needs to be handled by you. Your mental health is just as important as hers. No one wants to go to a facility and someone with anosognosia definitely doesn’t. But unfortunately that is often what is necessary. When you see the doctor I would consider writing a note and giving it to the receptionist for the doctor. Explain all that is happening and don’t hold back. This will avoid you having to anger your mom at the visit.

Anosognosia and Dementia - AgingCare.com.pdf

https://iona.org/therapeutic-fibs-ok/

Emily 123

Ugh. So sorry. This is a difficult stage. The person looks normal but below the surface their poor brain is spinning a mile a minute trying to keep up. My mom seemed calmer and was more accepting of assistance once she was placed on a low dose of Lexapro. My only regret was that I didn't push for it more strongly in the early days because I was still wrapping my head around our shifting dynamic and trying to respect her autonomy—she initially refused meds. She too had a high cognitive reserve and didn't want to feel incapable, and so it was difficult to assess how much she was being affected. It would have made both our lives easier so much sooner. Live and learn. Be upfront with the care provider about how these behaviors and her stress are starting to impact how well you can care for her.

You might find that when push comes to shove she won't actually engage in activities she's indicated an interest in, and that's not you, that's the disease. Even 'usual' activities and social settings become quite challenging when a person doesn't have a working memory, and trying to do things they used to do easily can set the person up to fail. It's a rotten disease.

Reneé H.

Thanks! I finally got her out of her room. I had to make it clear that she had to come out now, and that it wasn't a discussion. I didn't explain it. Just said it was necessary. I'll take some time today and tomorrow to type up the things the doctor needs to know about the direction things have gone with all this level of willfulness, and the mirror issue. I do get the sense there's some anxiety going on, so for the sake of everybody, I think putting her on meds to handle that might be a needful way forward for her sake and mine and the hired caregivers. I thank you for that suggestion!

There are some key things that she does know very well she can't do anymore. She knows she can't cook anymore, and she knew (thankfully) when she couldn't drive anymore. There's a weird amount of self-awareness things she does have a grasp on, so finding workarounds that fit her actual situation have been very challenging.

But, at least I've got her out into the living room now, on the couch, with the coffee table. Water in the mug she insisted on (after I washed it for her). Light snack that she likes. A show about a cool airplane - she really likes those, too. Her dad used to be a pilot with the Air Force. So, at least she isn't so agitated anymore. That's something.

In the meantime, though, I've started looking into full-time memory care facilities locally, because I keep looking for a plateau that doesn't seem to be coming any longer. So, the time to hand her over to the professionals full time may come rather sooner than later, by quite a lot. She's very sensitive to the space she's in, and the reason I've got her remaining in the home is that I'm pretty sure that once I put her into residential care, if she still has any sense at all of where she is, she's pretty likely to deteriorate pretty fast. But there's part of me that wonders if there's a hidden mercy in that somewhere, and I really hate that thought, but this disease gives no quarter to anyone. The legal paperwork is already in place, at least. I'll take whatever mercies I can take at this point.

Thanks for the help in this. You gave me the impetus to get the necessary done. I'll definitely work on next steps, here, on the rest.

H1235

https://alzconnected.org/discussion/comment/278919#Comment_278919

I expected that when we put mom in Al she would go down hill. She actually made some minor improvements. She enjoyed making friends and socializing. She was still angry with me and didn’t believe she belonged there. When we had to move her to the nursing home I again expected a sharp decline. But, she adjusted better than I could have hoped. You just never know.

Reneé H.

https://alzconnected.org/discussion/comment/278921#Comment_278921

There is a local place Mom said she absolutely did not want to go, because that's the same facility Gram went to some while back (her mom, but for what I suspect was VD, not AD). But I am finding places that are closer that also appear to have somewhat better overall scores for quality of care. I think I can find an acceptable medium that answers all needs without riling her up any more than necessary.

Emily 123

I think MC's a very sound idea. It's very hard to provide the 24/7 oversight and interaction on one's own. My mom was definitely more relaxed in the MC. It felt as if she didn't have to try to 'keep up' anymore. I'm so happy you were able to get her out of her room!