First Post...Feeling Resentful

ATK1

Hello All,

My mom has been living with my family and me for a month. She had been having memory issues for several years, and after my dad's passing last year and the isolation from Covid, we decided she shouldn't be alone. Physically, she is able to care for herself. She was excited at the idea of moving in with us, as she complained of loneliness and insecurity. Her only request was that she have her own space . Never did she want to feel like a burden to us and she wanted her own privacy, too. We decided, after a month or so of discussion, to build a home with an in-law suite in the lower level. She was very agreeable. She was involved in all of the planning. She talked about it almost daily ( in a year's time, which is how long it took to build from start to finish) with friends and family, as well as with me, that this was something she was looking forward to. Of course, I expected issues with moving, change, and becoming comfortable in a new place. What I didn't expect is that she rarely wants to be in the lower level. She is upstairs with us most of the time, eating with us and spending time with us watching movies, etc. I have been trying to make a schedule of activities for her because she seems to get "antsy" if she's just sitting. While not prepared for this, I actually enjoy her being with us. The issue? When she calls her friends and my aunt, she tells them I won't let her upstairs, she is alone all of the time, and I tell her I think she should go to a nursing home. Of course, this is not true at all! I don't understand how she can feel so happy when she's around us but sound so bitter and out of touch with reality when she's on the phone. I feel very resentful because I do so much more for her than anticipated. My attitude around her changes when I hear it and I'm sure she can pick up on it. If anyone has suggestions on how to deal with this feeling I would appreciate it!

sunnydove

Wow! Your mom is really lucky to have you!

I'd guess that one of her greatest fears is that you really don't want her there or want her upstairs and she's internalizing it so much she believes it to be true. My mom is in Stage 6 and I find it mind- boggling how she can remember the stories she has completely made up so well but can't remember the truth/actuality. 

I have reminders all over the house of how much Mom is loved and how I love living here with her. You could put up a sign downstairs that says how much you all love having her there and how she is welcome upstairs at any time. Maybe several such signs. And make sure one of them is near the phone. Not only will they help to reassure her, but they can remind her of her actual situation when she is on the phone with others. 

Arrowhead

Throughout the course of this disease, she will forget visiting with you moments after the visit has ended. She will continue to believe things that are not true. She will say things that are very hurtful to you, but you must remember that it is not her speaking, it is the disease speaking through her. Do not take negative things that she says personally. She’s happy around you because she enjoys your company. She’s later bitter because she does not remember the visit. Anything that happened just a few moments ago is quickly forgotten and, in her mind, never did happen. Always remember that her mind no longer works properly. It’s broken and cannot be repaired. It’s not her fault.

M1

welcome to the forum ATK1. There's a behavior called shadowing, where the pwd always wants to be around their caregiver, and that's probably what your mother is exhibiting. She probably doesn't like being alone, because she's at a loss for how to behave and no longer has the capacity or executive function to amuse herself or plan her own activities.  You might want to google Tam Cummings' stages of dementia, to get a sense of where she is in the course of the disease. As for the false accusations to others, these are very common, and there's no correcting it-one of the early lessons is to stop trying to argue or correct, you're dealing with a broken brain that cannot reason and cannot retain information. Getting your mind around that may help some with the resentment. You are undoubtedly her "scaffolding" that she relies upon to function, and you are undoubtedly going to have to do more and more for her unless you move her to assisted living or memory care. I imagine it was easy to miss her level of impairment until you were living with it full time. All of us caregivers resent the burden of that at times. 

Good luck, none of this is easy.

lalajean

i know how you feel. i'd get so frustrated with my dad, who is in early/mid stage dementia. and now that he's safe in al, i feel so guilty. and i feel bad for my past anger at him.

Emily 123

Hi,

You are a trooper!  Don't let the phone conversations get you down--just let folks know what's up and tell them to agree with & then divert your mom.  

You'll see on the boards that one of the keys to having a 'better' day is to have a routine.  The disease isn't just affecting memory, but also your mom's executive functioning, reasoning, intuition, and empathy.  Because her short term memory isn't functioning, she can't create new memories and retain information--there now has to be a lot of repetition for new memories to stick.  And some low priority information may never be stored.  (Example--my mom lived with me for 9 months, and each morning she had to pause to find the cereal in the post-it labeled cabinet.) The memories that do get retained tend to be ones that have a higher emotional value.  Adding to the memory storage issues is that there's only so much input that any of us can process at one time, and with dementia, that ability is reduced to managing, at best, a few steps in a row--and with multi-step tasks it's not always clear how to order them.  This is where routine helps tremendously.  

Finally, the person with dementia may not be aware of the extent of the losses (anosognosia).  As we all do, they will take the memories they do have and try to patch them together into a coherent set of events. As the disease progresses this can become a very 'mix-n-match' process-pretty much using whatever memories they can still access, even if they patch in a memory from years ago. Often the person can 'cover' when this initially starts happening-we're very socially adept animals.  And they will feel that their abilities are intact when they make plans.  This is a cause for anguish for the caregivers, as the person is often quite able to express what they want, but their stated desires are out of sync with what they can actually do.

So--  Your mom's fears are loneliness and insecurity.  She's in a completely new place, with a new routine, and getting a lot of information everyday that she's struggling to process. At first, she's going to be more likely to imprint memories that align with her fears, and not retain the stress-free ones, like hanging out with the family every day.  She's also going to seek out what is familiar, which right now is you.  You're an anchor and give her cues. Until she feels more settled you're going to be her security blanket. I think the suggestions here are excellent.  Give your mom a lot of reminders, routine, structure, and prompts. Don't overread the need for her to keep busy--she can only process so much and her plate's pretty full right now--she may just be antsy because she doesn't know what she's steps she needs to do. A decline in the need for stimulation/apathy/ability to initiate things is normal.  My mom used to be pretty active, now she can handle playing solitaire on an ipad for hours. Some other useful tools can be getting her an Alzheiner clock, a whiteboard/calender, some favorite music for when she's alone, or a specific easy chore she's willing to do, like laundry folding.  It took my mom about 3 months to acclimate to her AL and 'bounce back'.  Her abilities definitely regressed while she got a new routine. She loves to play solitaire on her Ipad, and I set it up to play jazz for her every day before dinnertime. Maybe an echo show or tablet set up in her rooms would help?  New technology can be challenging but something you can activate might work.  Best of luck-You're doing a great job!

harshedbuzz

ATK1 wrote:

 I feel very resentful because I do so much more for her than anticipated. My attitude around her changes when I hear it and I'm sure she can pick up on it. If anyone has suggestions on how to deal with this feeling I would appreciate it!

Hello and welcome to the best group nobody wants to join.

Your post reminds me very much of an experience a dear friend had with her mom. We used to have lunch every couple of weeks when her mom and my dad each had dementia. Often, the conversation went to the darkside, as it were. 

A couple of thoughts from her perspective-

1. Unless you are living with a PWD 24/7 you really have no idea what it is you are taking on. Her mom had lived just around the corner prior to them moving in together and they saw each other pretty much daily. DF picked mom up after her PT job teaching daily and they ran errands together, fixed dinner, ate and then watched a little TV before she dropped mom off at home. Her mom's gerontologist warned her she'd notice more decline after the move, but she was- in a word-gobsmacked by things mom did and thought later in the evenings and overnights.

I had a little more sense of dad's decline and level of function only because he lived at a distance and I stayed overnight with him which was a real eye-opener. On my last visit to their place in FL while mom was hospitalized, I found dad hosting neighborhood happy hour wearing only a bath towel. 

2. Dementia is a moving target with distinct stages and it only goes in one direction. The specifications that were important to her when the design of the house was finalized were likely no longer as desirable to her a year later when the keys were handed over. She may not even recall her participation in the project as most memories are kind of LIFO.

This happened to my friend as well; she spent 3 months looking for a house with an in-law suite before building one which took about 6 months. By move-in, they had to retrofit railings and grab bars in her suite and the downstairs hall and powder room. My friend spent a small fortune to retrofit her old dryer to electric some mom could be independent in laundry, but by the time it was delivered mom had forgotten how to use it and never touched the thing.

3. It is unfortunate that she is throwing you under the bus in her conversations with friends and family. Alas, this is pretty much par for the course. As she progresses, these people are likely to withdraw from her inner circle, so this will be less of a problem for you. Perhaps these folks already know it's the dementia talking. If they don't, defending yourself is likely pointless IME as the "olds" tend to stick together. 

4. That said, you are probably correct about the bolded section. The ability to read emotion persists well into the end stages of the disease. Long after a PWD can recall what was for lunch, they can parse and hold onto the mood of an frustrated caregiver. 

That said, it's OK to feel what you feel. Caregiving is a really tough gig and if you were under the impression mom would entertain herself in her space allowing you to spend time alone with a spouse from time to time, it's easy to see where resentment would build especially if she's been shadowing you all day. Shadowing sounds pretty innocuous until you have been on the receiving end of it.

5. Support would be good for you. That could mean here. It could also be useful to join an IRL support group. My mom also saw a talk therapist for a time when in the thick of caregiving. 

Respite is probably a good idea, too. If your mom is shadowing or can't be home alone (or is nearing that point), introducing a companion aide would give you a day off from your role as her personal cruise director. My DF brought in someone who baked and did puzzles with mom initially and later added hygiene (hair and showers) when mom started to balk at help from DF. It's generally best to introduce these as a helper for you rather than have mom tell everyone you've insulted her by getting a babysitter- maybe this person could be a housekeeper or friend-of-a-friend who lost their job and is helping you out.

12 pt Understanding the Dementia Experience (dementiacarestrategies.com)

HB

kyronae

Arrowhead is completely right. As the dementia progresses, your LO is still there, but they can't always access all the pieces of their brain and memory at the same time. Emotions are more likely to stick in their memory than events. I don't know what your LO was like before this disease, but I'll share a bit of my journey with my mom as an example:

My mom always struggled desperately with insecurity and depression. She was utterly convinced she wasn't worthy of love. I am her only child, and even with me she often doubted that I loved her at all, despite the fact that we were remarkably close for most of my life. When we were more distant, it was because she was a heavy drinker and we often fought about that, particularly because I wanted her to be happier and healthier and she carried that guilt and couldn't really shake the addiction.

As the disease progressed, I started visiting more often and trying to find other ways to make sure I was present in her life (due the aforementioned drinking, I'd previously had to put up more boundaries for my own sake). I would call and drive out for visits. I wrote her notes. I bought her one of those long-distance touch lamps so that every time it lit up, she'd know I was thinking of her.

Even so, I'd come out to visit a week after my previous visit and she'd be completely convinced we hadn't seen each other in months. Or we'd talk two days in a row and she wouldn't remember the previous call. Sometimes she was bitter or heartbroken about it, and she'd take it out on me. It hurt, but she wasn't doing it on purpose. She simply didn't remember.

For your own sake, if your LO is complaining to people who are also in YOUR life, go ahead and reach out. Let them know what the actual situation is. Otherwise, do what you can for your own mental health. Leave and get some friend/date time where you can safely vent. Consider counseling. If she says something hurtful, don't be afraid to walk away and give yourself time to recover before responding. 

You aren't wrong to feel what you're feeling. But, even if these behaviors aren't completely new (my mom's were based in long-held insecurities, for example), they are different in this context. Rather than a form of manipulation or lying, they're just the memory breaking down and failing to piece together in a chronological manner.

You're doing an amazing job. Even in the times she doesn't know that, it's still true. Deep breaths and know you aren't alone.