Can’t be pleased 😞

MissOldMom · June 21

Coming here mostly to just vent. Mom has lived with us a little over a year now. Moved from one part of this BIG state to another after 40 years so BIG changes in every way. Left behind her bffs, the option to drive (her choice not to), the familiar, her own house, had to sell a lot of her things or put them into storage, left her church, etc. In the last year I have tried everything under the sun to help her find some happiness here. Nearly impossible or only short lived.

Now…I know what I just said above pretty much probably explains WHY she isn’t happy. She is 84, she has Alzheimer’s, and she’s left the life she at least did have familiarly and fellowship with others to have to move to where she knew 2 people: me and my husband. My husband is her favorite person in the world and her dog is her reason to live…not kidding. If the dog passes, we think she will lose her will.

So…all that being said, here is what I’ve tried…found her a church not long after moving her. Found her a Sunday school group with ladies her age that welcomed ME in even though I’m not the age of the group it’s intended for. Take her every Sunday as long as she’s up to it. Have handled all things financial for her. Have made sure she has connections with the ladies in the church group, has weekly if not every other week out for a meal with one or two of them or to some event within the church. This is what she did back home. That’s almost all she did before she moved. Just lunches and such with her ladies. Which is fine. I have honestly tried to recreate her normalcy as much as humanly possible. We built a room for her and set it up like her old bedroom right down to the placement of furniture, the tv, and pictures on the wall. I have Fridays off currently and take her to lunch on those Fridays. In a nutshell, we work our butts off.

Here is normally what we receive in return:

I don’t like the food at this place (after eating there once), so I don’t ever want to come back here (even said it about something she ordered at Olive Garden which is her favorite restaurant ). We were there too long (if we go somewhere more than like 30 mins). The church group makes me feel like a 5th wheel (even tho 2 of them make it a point to include her weekly to go somewhere). There were too many of us at lunch. The Sunday school teacher hates me because she interrupts me (she interrupts everyone and it’s normally because we have to finish the lesson or we’d be there all day). The children never acknowledge me (I have 2 college aged boys and yes, they do). The broker from up north never calls me anymore because he doesn’t like me (he doesn’t call because she has Alzheimer’s and all transactions go through me and me discussing anything with her rather than her making an unsound decision and he actually adores her).

It goes on and on and on. Today I lost it. Not in front of her but went to the bedroom and pitched a good old fashioned hissy temper tantrum with my hubby because he is my rock. And he let me.

I feel nothing we can do can please her. Can’t make her happy. Can’t set out to try and hope to success. Plan to fail. That’s how I feel. It can REALLY add up over time to always have to be the strong one, the logical one, the one that has to SHUT UP when she says the most outlandish things because, as I already am quite aware of, her brain is broken. Her logos is gone. Her filter is minimal.

My mom was my best friend when I was younger and into adulthood. She was the sweet mom all my friends wanted to come over and hang out with. That mom is gone and I miss her.

We do not have family that can give us a break. Her awareness is still “too much” that she won’t agree to a respite person being here. We can’t get away together. My kids are only here for the summer and half of that they are elsewhere. Sure we can go out a night or two and they will be here but I’m talking in a regular yearly basis we can’t have a life apart from this burden of constant care giving. We’ve recently had to set alarms so that when the door is open we know she’s out. She not wandering but can’t gauge the temperature outside well and goes out in the heat of the day (really really bad heat and humidity where we are) with her elderly dog who has a fur coat and can’t realize het, you’ve been out here for 30 mins…so if we don’t watch that she comes in like she’s limp and sick feeling (which is why we watch it) but usually get argued with over how long it’s been.

Blah. Just blah. I’m tired of the constant lack of life we have from doing this. I’ve read about this disease for more than a year now daily (yes, daily). I’ve read The 36 Hour Day. I’ve looked at research. I take her to all her drs appt for this plus the many other health conditions she has. It’s truly like having a toddler both in body and mind. She relies on us for most things other than dressing and bathing herself. Thankfully she can still do that and she uses a walker. She complains about taking her own dog out but if she didn’t then she’d get zero exercise at all. Which would make her deteriorate even more. I do realize that since I’ve done all the reading etc that it should explain a lot about why she can’t be pleased. VERY easy to understand on paper. Not easy when you’re in the moment.

I’m just spent and needed to get it out. I don’t know how she’ll be with me once I go back into the other room but I’ve decided to wait until my husband is done getting ready so I can handle it better.

Thanks for letting me rant. And prayers for all of us that face this horrible disease with our loved ones.

Edition: one thing I might be coming to the realization about is that she’s entering a new stage and maybe doesn’t want ANYTHING outside the house anymore unless we are there or it’s literally ONLY us (me and hobby, mostly hubby). It’s like the parent and child roles have reversed just like most people caring for a parent have said. It’s just that hubby is her fav child. Lol. I get the brundt of the complaints and negativity. But it’s like her saying she doesn’t want to go here or there or people don’t like her is a way of actually saying “I’m only comfortable at home and with you guys, so everyone else is hateful and the food anywhere is awful,” in a weird way.

psg712 · June 21

You have described dementia caregiver strain perfectly. AND you are a rock star caregiver. You have done everything possible to make your mom's life comfortable and familiar even with the long distance move.

Your last paragraph is truly insightful. It is the disease. You know this is not the mom you were close with all your life. Some of your anger and frustration is fueled by grief for the mom you are losing piece by piece. Most of us on this forum can relate to that ongoing loss.

Soldier on, friend. Vent here and to friends/hubby/the dog when you need to. Do you have siblings? It may be time to open a conversation about what support you need and at what stage you and they might consider placement. Not pushing that option...just know that her needs will increase over time.

Seriously, you are doing a beautiful job. But you do need respite. Is there a church friend who would sit with your mom to give you an afternoon out? Dinner with your family? Brainstorm some ideas with your hubby and friends. This is a marathon. You need to pace yourself if your mental and marital health is going to stay strong. Keep us posted.

Quilting brings calm · June 21

My parents’ doctor told me that they were no longer capable of being happy, that all I could do was strive to keep them safe. That’s the case for you too. Her brain is broken, she isn’t going to be happy. She probably wasn’t before she moved, but you weren’t hearing about it every day.

I suggest adult day care, or movement into an AL facility where there are daily activities. You can take her out where you want for lunch, church, shopping etc.

H1235 · June 21

I can relate. I can do nothing right. I do everything I can to make her happy, but it’s always wrong and never enough. I repeat in my head like a mantra “nothing is going to make her happy”. I try very hard to not expect or even hope for happiness (sad). I believe the person doing the bulk of the work is seen as the person taking everything away and therefore gets all the blame. You might be onto something with the outings. It might be worthwhile to try a week or two without the outings to see if she does better. If AL is something you might consider down the road, keep in mind there can be a waiting list at some facilities. I would say Al might offer her some independence and improve her mood, but my mom is in Al and while she socializes and enjoys it she still saves all her anger for me. I hope she has some good times with the other ladies, it hard to say. Good luck.

sandwichone123 · June 21

My dh got to where he couldn't stand any group with more than two people—him and one other. Otherwise he felt like we were just talking across him. To be honest, we probably were, as he could no longer hold up any sort of conversation, but any exchange with each other at all made him feel left out—he could really only tolerate 1:1 social activities. Perhaps your mom is getting there as well.

There is an upside to this. Perhaps she can't stand Sunday school or family dinner any more, but she could still enjoy one of the ladies taking her to lunch or coming by each week. Perhaps she could enjoy some 1:1 time with you one evening and your spouse the next. That would allow each caregiver some time "off" each week.

SDianeL · June 22

we understand. We grieve for what we’ve lost and what could have been. The things you describe could be caused by depression or anxiety or both. You might ask her doctor for meds to help that. As the disease progresses your caregiver duties increase. It will become 24/7. Fib to her if you must to get her to accept help. Tell her it’s for you. Tell her your husband gave it to you as a gift, tell her it’s someone going to school that needs work and you’re helping them out. Look up your county’s agency on aging for daycare for seniors. Tell her it’s a social club. I would highly recommend that you start looking into memory care facilities sooner than later for your mental and physical well being. You would still be her primary caregiver just in a different role. You would do it for her, not to her. 💜

MissOldMom · June 22

First, THANK YOU all for your insight…I truly appreciate the advice and thoughts and the sharing of your own experiences. I have really been looking each of the comments over and have some peace about several things going forward. I definitely had let some things build up with my frustration which all came out in my hissy fit in front of my hubby…I'm thankful he is a such a kind and understanding and patient man for sure. Without him, there is no way on earth I would have been able to do this at all…I applaud those who have to do this alone, no help or family to assist in any way. I have no idea how you do it, but I know the phrase "because I have to," is pretty common for many.

I wanted to reply back to a few questions because so many took the time to give me their thoughts and I feel that it's only right to explain some more about the unanswered such as "do I have a sibling?" I do. My sibling is very far out of state and, to be honest, living in memory care would be better for her than living with my sibling or even visiting there. Lots of history there, but let's just say there is a reason my mom is here with me and not with my sibling. It would be a disaster, and honestly, my own Mom even knows that. I'd rather have help from a stranger that can come and visit than have my sibling involved in any way, shape or form. It would NOT be good for her or for us. It would actually be more detrimental than not. I'm putting this very nicely, believe me.

I think both the insight and the suggestion to have someone (church friends) come and sit with her at home and bring lunch is a wonderful idea, actually. I think we really have entered that stage that she's not happy going out of the house much more than necessary, even if it's for something she says she wants to do. We definitely get perplexed when she says "no one wants to spend time with me from church class" and then gets invited to an event and comes home complaining that there were "too many people" or that she didn't like it, the food, the church choir that sang, etc. So it's darned if we do, darned if we don't. However, reading something recently (maybe here) that it's not going to be the same relationship anymore and not to do too much seeking of that out anymore and instead just realize this truly is a new relationship of caregiving and less of being her daughter anymore (which is sad to me…but also makes perfect sense). I'm the one that has to assimilate to that new "normal" because she can't make heads nor tails of what "normal" is anymore anyway. It IS true that we grieve for what we've lost and what could have been for sure, SDianeL.

The comment about feeling like nothing can make our parent happy anymore that we do…yes, I feel that way often. But the insight to just keep them safe is VERY true and can be done, absolutely. I saw on a video on YouTube, a caregiver had come to the conclusion that she needed to do 3 things as far as her responsibility of taking care of her parent..keep them clean, make them comfortable, give them their dignity. I've been saying that since I saw it (months and months ago). When I was "in the moment" the other day, all of that went out the window. On most days, I CAN do those things and not have a problem with it. I have to be cognizant of not letting frustrations build to the point of a meltdown again (or have one, just have it with my hubby like the other day)…

I've had several people ask me about moving my mom to MC or a nursing home, including on this board (or at least suggesting it). Great suggestion…however, it would take me an entirely new post to explain why that can't work for now…lots of REASONS, not excuses…one is her dog. That's her reason for living, not even kidding. She already moved across the state once with us and it took the entire year for her to even adjust. She still hasn't FULLY adjusted and as long as this place isn't "back home," it sucks. So if WE suck and all the things we have done for her suck, then moving her again where she can't have her dog and all the help and things we do provide (including just KNOWING someone here such as us) would, in my humble opinion, send her over the edge. Plus she'd never agree to it at this time and neither would my sibling. My sibling would literally show up and practically kidnap her and the dog before they would allow a memory care home for NOW….why do I say "NOW?" …because we HAVE talked about when Mom isn't able to be cared for at home properly (can't lift her, maybe having accidents or wandering out the door at night, etc), then we WILL be looking that route. She's not there yet…we are stuck in that stage of "cognizant enough" not to agree to that. So is that an option in the future? YES. Is it right now? Nope…not yet. I don't think it's taboo or a horrible thing at ALL! It would have been way more feasible to do it keeping her in her hometown where she had friends, but she wanted to live WITH us…so we made that happen and wow…regret…but in the future, when it's all said and done, my hubby says it was the right thing to do and we don't need to question ourselves about it. We just have to continue to come up with new ways around her next complaint. And we do. It's just a constant thing, and that's the crappy part.

So this morning, I did something different…I did NOT take her to church. Since her last comments about the ladies' group was so negative, I decided, let's take a break from the out and about 2 times a week or even once a week and maybe just…give it a little time for now to not have to go anywhere. I would never deny her going to church…that's a very important foundation for her AND for me…but today we needed to just stay at home. Now…she tells people on the phone from back home "all I do here is sit on the couch and watch tv." TRUTH! Not because we don't offer to take her here, there, and the moon. And not because we don't OFFER to…she just usually comes up with a reason not to go, plus she actually complains if we are out longer than a short time (dinner is a long time). So the people on the other line only get her version of "woe is me, I don't have a life" when we are giving her one PLUS more. But when we do, she doesn't want that either. So…..

….we just keep moving forward and for now take a break from any outings (unless she comes up with wanting to go somewhere), and I've even decided to keep meals the same old same old for her (she has distinct breakfast and lunch preferences and we don't try to change those, but when I take her OUT to lunch, it's allllllll wrong…lol). Dinner out? Forget it…she hates it all unless it's her staple of her favorite dinner…I couldnt eat it every night, but I believe she could. Which brings me to the overall point…she just wants to have comfort in what's coming . She knows what's coming for breakfast. Same. She knows what's coming for lunch. Same. Dinner? Yeah, that's a crapshoot and we never know the reaction we're going to get even though we make all the foods she likes in general. Maybe we should make the same dinner for her nightly too…who knows?

Long reply, but just wanted to say thanks for being so attentive to my situation, and I feel very welcomed and comfortable here sharing. Blessings to all 😊

SDianeL · June 23

💜

Maru · June 23

https://alzconnected.org/discussion/73337/can-t-be-pleased

At an earlier point in my life I was a Spiritual Director. What I found was that some people were just in need of someone who would listen, really listen, to them. You might find that a good conselor would give you a safe place to voice your fears, complaints, etc.

This is a hard thing to bear alone and it isn't going to get easier. Make sure that your needs are being met. If not, you won't be able to help your mother in the way that you want to. If you are a praying person, prayer is great comfort.

MissOldMom · June 23

https://alzconnected.org/discussion/comment/246425#Comment_246425

thank you for the insight! I actually did see a counselor for about 6 months but she just wasn’t my cup of tea. I happen to GREATLY believe in counseling and have done counseling several times in life. I should check with my work (just started a new job as well) to see what kind of coverage they have and get going again for sure.

Can’t be pleased 😞

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