JCC Coping with Elderly Parent Issues [Support Thread]

[I did a couple of thread title searches and didn't see a thread for this topic, but if there is already one, mods please merge this as needed.]

I don't know if anyone else here is dealing with aging parent issues, but as some of you may know from recent posts I've made in other threads, my elderly mother recently had a significant health issue. She had a fall, had to have emergency surgery for her injury and was hospitalized for a week, and then was released to a nursing home for what was supposed to be temporary rehab.

However, she then had a 2nd fall in the nursing home and while her original injury seems to be healing, her overall condition since the 2nd fall has definitely deteriorated, even though the only injury they could ascertain from that fall was a sprained hip. Several years ago, she was diagnosed with "mild cognitive impairment" but had been continuing to live independently and doing ok with that (with a fair amount of assistance on my part, particularly once the pandemic started) before she fell in late January. However, her cognitive state has definitely declined significantly since all this happened, particularly since the 2nd fall.

I don't live in her area and have been trying to manage the situation remotely in the midst of a job which keeps me very busy (including working on the weekends). I had already been planning to move her to my area last summer, but didn't do it because of the pandemic (didn't want her in a congregate setting as I was planning to move her to a senior community of some sort).

I will be moving her to my area this summer, but everything with that plan is now more complicated given her decline this spring. I'm just hoping she will recover enough to be able to do assisted living with "memory care" rather than just moving to a nursing home as a long-term resident. For one thing, I am now trying to get Power of Attorney status since her Medicare-pay status may be changing soon and I will need access to her funds in order to pay for her care once the Medicare coverage ends.

Anyway, I've been having a difficult time dealing with all this emotionally and thought I'd start a support thread in case there are ever any others around here dealing with these kinds of issues (or others who have done so in the past and ever want to share their experience/insight/advice).

As anyone who has dealt with these kinds of situations knows, there are so many fraught issues that typically arise--conflicts with siblings over how to handle things, long-standing family "baggage" in the parent-adult child relationship(s), the sadness of seeing a parent decline, guilt that comes with not being able to do as much as you think you "should" be able to do, and of course a host of logistical and practical challenges.

Thanks to any who made it to the end of this opening post! Hopefully this thread can be useful to anyone dealing with these issues.

 

That chapter of my life is over now, but I spent five years caring for my parents. I helped them sell their house and move into an independent living community near me so I could help them manage their doctors appointments, shopping, medical supplies and medicines, etc. It was the right decision, though very hard for them. After my mother died, I helped my dad move to a smaller apartment in the same facility. We struggled for the remainder of his life about whether to move him into nursing care, but in the end we just decided it was best to let him stay in his independent apartment and hired round the clock care for him. It was something he could afford, and that definitely made the choice easier, but I had to manage all that - employee payroll, state and federal tax withholdings, W-2, state-mandated employee disability insurance for his caregivers, etc. And of course I was always the sole relief care when they had time off.

It was a privilege to have been able to help care for my parents, I wouldn't have traded it for anything, but I know how difficult it can be.

Please feel free to PM me any time if you'd like to discuss any issue or just chat with someone who's been through similar circumstances.

 

Thanks for that post, @Rylo Ken. Really appreciate the offer to talk with you and I'm sure I will be taking you up on that at some point.

 

@Pensivia sorry about the issues with your mom. I am glad you are working toward moving her closer to you. I hope you can sort out the Power of Attorney papers and everything else soon. And thank you for starting this thread.

As some here may know, I am the primary caretaker for my awesome elderly mom. She has several health issues, but the main one is osteoarthritis right now. Her knees are shot (partially because of falls and now two botched hip surgeries on her right hip). We’ve tried many medications and she will probably go back to one Tramadol a day now until we can get her to knee person who can inject gel into her knees.

Mom is in a tough state, she’s in pain constantly and needs assistance with everything. My sisters and I have balked at putting her into a home (as our experiences with her in rehabs and with home care have been rather bad).

We have to sort this, our vaccinations and then prep to move. I’ve been wanting to move for years now as the increasing drug use and rude neighbors have skyrocketed in this apartment, on our block and the block behind us. (The landlord won’t do squat now and even suggested we seriously consider looking for a ground floor apartment.)

The pandemic has been a blessing as I have been home to care for mom. Am super glad to help her, I am very close to mom. Just get frustrated and a little angry I cannot do more for her (Plus, the aforementioned external triggers that disrupt living and sleep here.)

@Pensivia, and everyone else, I know how you feel and am right here with sending you and your parent(s) a big healing hug. I will gladly answer everything here that I can.

@Rylo Ken thanks for sharing that and offering PM time.

 

I’m currently caring for a great grandmother with dementia who loses things and then becomes accusatory. She constantly is moving and hiding things because she thinks people are stealing her stuff. But it’s just that her memory fades after five minutes and she forgets she even hides things. Fun times.

 

I know he isn’t elderly but my dad has Alzheimer’s. So the whole family helps out. The one upside for 2020 was I could spend way more time with my father both after and before he was diagnosed. My whole family has done a pretty good job so far. That’s all you can really do. Support the people you love.

 

Also if you have siblings, do any live closer to her than you? If so, maybe they could help until you can get her moved closer to you?

 

Agreed completely. I have a very similar story. My mother's sister took my grandmother in and used my grandmother's assets to build herself a new house for them both to live in, was unemployed and lived off my grandmother's pension and the survivor pension from my grandfather. Yes. She took care of my grandmother, but in return for 100% of her income and assets, and it caused a rift.

Fortunately, my sister and I had this story and my mother's long grievances about it as a template for exactly what to avoid.

 

Yes, I've read about the paranoia that can come with dementia. My mom has shown some tendencies in that area even going back several years to her initial MCI diagnosis. Not about specific items she can't find (yet), but when my husband and I were staying near her and trying to help her recover after a different surgery back then, she seemed to get suspicious that my husband and I were somehow trying to "get her money and put her in a home" etc. I attributed it to the lingering effects of anesthesia in someone with pre-existing cognitive impairment, but some things that came out of that year (things she both said and did) were very hurtful to me and my husband at the time, and unfortunately my husband's relationship with her was permanently damaged by what happened.

And I understand exactly what you are talking about @Darth Punk. I have been reading articles and blog and forum posts on elder care and end-of-life issues, and I think what happened with your mother and aunts is sadly very common. Fortunately, years ago my mom set up a trust for her assets, and my sister and I were part of those conversations and know the terms of the trust. In addition to that, I doubt there will be any such issues because my mom's savings are not extensive (relative to what the likely costs for her continuing care will be over what could be years of ongoing care), so I fully anticipate that all of her savings will end up being used for her care.

Unfortunately, my one sister lives in California (so even further away from mom than I am). She's trying to help with some stuff (she's a P.A., so she's been handling the communication with the facility staff in relation to medical issues), but she can't take a leave of absence from her job right now either.

 

My grandfather went through this, and a number of my family members by extension. He had Alzheimer’s and also regularly lost things, then accused others of doing it. Eventually, he started hiding things from people, including himself, since he couldn’t remember where he put anything. He also got into arguments with a neighbor, and went out once and got lost, requiring a police search.

Years after he died, not long after my grandmother passed, I stumbled across a collection of dollar coins that my uncle had tried to find many times in the house and gave up on. My grandfather had put them in a file cabinet in a back room, no doubt to keep them safe (as he saw it). They were valuable for sentimental reasons, I believe, and my grandmother had asked for them.

 

My dad had vascular dementia. He wasn't in pain, occasionally got a little delusional, but rarely spoke and just gradually got weaker until he was completely bedridden. My mom and I cared for him at home for 5 years. He never complained and always seemed content. We had daily visits from home care professionals and weekly nurse check-ups which helped a lot, but it was still very draining. He finally passed quietly in his sleep Dec 7 2019. Honestly, by that time it was as much relief as grief.

 

Yeah, I've thought that that could be what my mom has. She's had poorly controlled Type II diabetes for years, so that of course has put her at significant risk for that type of dementia. The nursing home actually did a CT scan of her brain this week, and I'm not sure what the results are even capable of showing, but maybe it will show evidence of vascular dementia. My maternal grandmother also developed vascular dementia (though she never had diabetes and in fact was in much better overall physical health than my mother when she was my mom's age.)

I've often wondered in the last several years if I'm having an even harder time adjusting to this situation than I might otherwise because I am not a parent myself. Though of course if I was a parent, I know it would actually be even more difficult because I'd have the added responsibility of my children's needs in addition to my mother's. I know this may sound weird, clueless*/tone deaf, or even selfish to people who are parents, but I'm finding the experience of becoming so responsible for someone else very overwhelming and anxiety-inducing. (*as in, "yeah, ya think so?!...welcome to my world!")

Although there were multiple reasons why my husband and I made an intentional decision not to have children, one of the reasons I decided I didn't want to was because of my demanding job** and the fact that I have struggled with anxiety problems my whole life (problems which seemed to get worse when I reached middle age). So I'm sure that's a factor in some of the struggles I'm having.

(**I realize of course that many other people also have demanding jobs and manage to be parents as well. I admire and respect that, but after years of careful consideration, ultimately I decided that wasn't something I wanted to do.)

 

@Pensivia, if vascular dementia affects your mom the way it did my dad, well, things could be a lot worse. Dad was not in pain, had no complaints, and rarely got confused. I only remember him being seriously uncooperative once in 5 years. I was getting him into his wheelchair for supper and he was insisting that he had to go out and run his time trials (he was a competitive runner for most of his life). He couldn't even sit up by himself, but he thought he was going to go out and run. I got him to the dinner table and he ate a little supper, then he got tired and when we put him back to bed he went to sleep and that was the end of that delusion. That was the worst he got in 5 years, so it was very manageable.

 

I'm glad your dad was so content, @Sarge. I'll just have to see how things develop with my mom. She had a lot of complaints her first few weeks in rehab, but now just seems really confused and withdrawn. I have actually been wondering if maybe she has developed "delirium" which according to my reading online, is something distinct from dementia progression and can be induced by hospitalization/surgery/nursing home admittance.

I'm just hoping that when I can get her moved to my area and am able to visit her in person on a regular basis, that she will come back closer to her pre-fall cognitive and emotional baseline.

 

I never had to deal with dementia in a parent - mine both passed away due to cancer and they were still pretty cognizant at the end.

 

I am not a parent either and can relate to the anxiety you are feeling. At the same time, I am so grateful I am here for mom. She has a hard time asking for helping and accepting help graciously -and while I initially was scared of helping her- everyone is surprised at how much “I’ve stepped up to the plate” as it were. Still annoyed I did not finish school and a few other things, but my health situation and stubbornness got in the way...

So I can relate to some of those anxious feelings and not wanting kids (Cats are my kids). I have so much respect for parents with demanding jobs and being caretakers for family, their parent(s), etc.

Ironically, our brother-in-law is also handling the caretaking with his mom (which is partly why he moved down South.)

@Sarge glad to hear things were generally easy with your dad.

 

Starting to worry about this. Especially with mom. She is not 70 yet and is increasingly forgetful.

 

Thanks @Master_Lok. That's really great that you've been able to be there for your mom. Your living situation sounds frustrating--I hope you're able to make a move to a better location soon, and that your mom gets some relief from her constant knee pain.

Yeah, I don't think many people have good experiences with nursing homes (at least not that I'm familiar with). I'm really hoping my mom will only need assisted living rather than a nursing home by the time we move her to my area.

 

@Pensivia I'm sorry to hear about your mother

Here's my two cents, having looked after my grandmother and my mother-in-law when they declined. Obviously my experience was very different from yours, since they were both staying with us (because we wouldn't want to lose our big fat Greek family credentials, would we?) but I think there are a few bits and pieces I can share. To give a bit of context, my mother-in-law was 87 and she was mostly fine – heck, she was in amazing shape and hyperactive for someone that age, she was just beginning to be a bit forgetful the way elderly people can be. My grandmother was nearly 100 and even though she was doing quite well all things considered, she became *very* forgetful in her last couple of years and she was also quite frail. They both spent the second semester of 2018 in and out of hospitals, one with a broken hipbone and the other with heart issues.

The first thing I can tell you is that being disoriented after hospitalisation, and even more after surgery, at that age, is completely normal and it's something they both recovered from up to a point once they were back in a stable, familiar environment. My mother-in-law was back to nearly 100% of her mental faculties after a few weeks in a rehab centre where she stayed a bit for physiotherapy. The fact that she saw us every day and that there weren't a million different doctors and nurses looking at her and prodding her like in a factory-sized hospital worked miracles. My grandmother didn't improve as much even though she was at home, but she did improve somewhat, and, well, she was very, very, very old.

The second thing is that they had both been rather unhappy about being old and less able to do things before their accidents, and their unhappiness turned into outright depression once they started going in and out of hospitals. My mother-in-law in particular felt incredibly diminished, and I'm convinced that her depression was an essential factor in her second accident. Here in Greece we don't have much in terms of psychological support services for elderly people, so the doctor just prescribed anti-depressant medications that, if anything, made things worse, but I think you have better services in the US so I recommend that you look into that.

The last thing is a piece of advice that I'm going to write in all caps because I think it's the most important thing in this situation: TAKE CARE OF YOURSELF. Do not let your mother's health and old age issues take over your life. Judging from myself, from the rest of the Big Fat Greek Family™ and from friends who went through similar things, it's easy to get completely absorbed (psychologically) into looking after the elderly person you love, and that is a one-way ticket to depression and burnout.

As an addendum to this last bit, I'll say that reading things online about this and that sort of dementia is (IMO) useless and it's actually part of getting psychologically absorbed into looking after your mom. What sort of dementia she may or may not have is an issue for her doctors to determine – and our doctor was pretty blunt about the fact that, when we're talking about "generic" dementia, the details don't matter that much. What does matter is that you can be there for her, which you're doing already as best you can – and the best you can is the best there is, so don't let yourself be consumed by the sort of guilt that leads you to spending the night reading medical websites instead of, you know, sleeping. Especially when you already have to deal with all the logistics of this situation in the crazy times we live in, which is no doubt already taking up a lot of your mental space. Again: TAKE CARE OF YOURSELF. If you don't, the best you can will degrade, and you'll feel even more guilty, and... burnout.

I hope you can sort out the practical side of all this soon, so that you can be near your mom and look after her the way you would like to

 

I'm so sorry to hear you're going through this; I deeply empathise.

As you can see from the comments, this is so common. I hope that your plans come to fruition to move your mother closer to you, as then at least that is something that one can hope is mutually beneficial. My own mother died from complications of Alzheimer's, and worse, it happened on the other side of the world, so I can't claim to have been a principal carer; but seeing her personality disappear as she deteriorated, was incredibly hard. I got back to the UK two days before she died, so that at least was something.

I've done elderly nursing care for several years and have nursed many through the end stages of their lives. I've held their hands in their final hours on many an occasion. But I was able to wash my hands at the end of a shift and go home. I do not envy those who effectively have to do this full-time. You have my admiration and respect.

 

Thank you @Chyntuck and @CairnsTony for your posts. Much appreciated.

I also want to make explicit that I really appreciate everyone who has added their thoughts so far (as well as the "likes" for my OP)! It's actually been quite therapeutic for me already just reading others' experiences and thoughts and feeling like I could "vent" a little about my own situation. So thanks, JCC community!(with apologies to those who hate emojis, lol)

Yeah, that 2nd observation really applies, unfortunately. My husband has already told me I need to work toward getting more psychological "distance." It's difficult, but I get what you are saying and I know I need to try and avoid that kind of "absorption" that you're talking about.

I do hope my mom's cognitive state improves once I can get her set up living in my area. Because she had a pre-existing cognitive condition ("mild cognitive impairment," which was diagnosed by neurologists in 2017) that is considered more than just expected/general effects of aging but less than dementia--and which has an increasing rate of progression to actual dementia as years go by--I realize that she may not be able to recover as much as she might have been able to do otherwise. Only time will tell.

On the depression issue, it doesn't seem like mental health services are available to her where she is now. I think that if I can get her into an assisted living community in my area that has a "memory care" component (that is a specific label for particular services provided for those with cognitive impairment/dementia), that there may will be more opportunities for that.

It is others who deserve that admiration and respect, Tony. I will not be caring for her full-time even once I get her to my area (this fact is actually a big source of guilt for me, but I guess I just need to own and accept that this is the case). I really admire not only the health care professionals like yourself who work in these areas, but people like @Sarge and @Master_Lok and @Chyntuck who did take on those kinds of full-time, at-home elder care responsibilities.

 

@Chyntuck and @CairnsTony thank you very much for sharing. Self care is extremely important (I need to exercise and draw more, amongst other things, that helps me cope and avoid burnout.) Am also understanding I am not perfect and should not feel guilty if I am cranky or angry. Mom and I have always been able to talk after spats or arguing so that helps.

Unfortunately, mom is depressed about her situation (we just sold her car which is a blow), so I try to boost her out of it and spoil her a bit when I can.

I am trying to do better with our diets (as we are very sensitive), but I agree with everything Chyn mentioned.

@Pensivia hope your mom’s mental well being improves with the move.

We can do this.

 

I meant to say earlier that I remember reading your posts about the "supply deliveries" (delivered under strict covid protocols!) you were making for your father from early in the pandemic.

And it's wonderful that you were able to do all that you did for both your parents. I'm sure your father was in a much better situation living in his apartment with 24/7 home care than he would have been in a facility with many patients. As we know, the long term care system in this country generally is...not good.