A Thread for Those Caring for Aging Parents etc.

[CJ2008]

How are you doing, VRBeauty? How is your dad?

CJ - my father is doing better than anyone expected. He's regaining strength so well that his physical therapist wants him to start using a cane rather than a walker, and his speech therapist and ENT have cleared him to eat most any food. My brothers and sisters-in-law have worked it out so I got to spend two much-needed weeks in my own home. Among other things, that has given me some space to grieve my friend. I know that when I go back to my father's house this weekend I'll be there for at least ten days straight, but I think I'll be ready for that longish stint.

Thank you for asking!

So glad to hear your dad is doing better and that everyone pitched in so that you got some time at home to grieve and to energize and to just be without worrying about anybody else.

Your dad is so lucky to have you and I am sure so looking forward to your visit. Hope your time with him over the next couple of weeks goes smoothly.

 

[Kelinas]

I need ideas before I go insane.

What do the elderly do for fun? I can't for the life of me, figure out anything fun or productive for my father to do outside of the house.
It's driving him crazy and it's driving me inland insane.

Tonight's been one of the most trying nights of the last 2 months.

 

[VRBeauty]

I need ideas before I go insane.

What do the elderly do for fun? I can't for the life of me, figure out anything fun or productive for my father to do outside of the house.
It's driving him crazy and it's driving me inland insane.

Tonight's been one of the most trying nights of the last 2 months.

I hear you! I'm just finishing up 8 days with my father... I go to his house rather than having him come to mine, and I finally figured out that doing chores, yard work etc. during the day will help keep me from going insane!

Anyhow, excursions do help. We went to the library one day, and my father picked out a few books that he's now reading. Errands also help - my father still does his own banking (we dropped off over $500 worth of rolled coins this week! ) and most of the time he likes to accompany me to the store. Of course those trips are also get-away opportunities for me, so I don't always ask him along. Plus he moves verrrrry slowly these days.

My father spends a fair amount of time on the computer, and he does like to read the newspaper and the occasional book. But does any of that give him fodder for conversation? Noooooo! I think he could easily go an entire day without talking. I do realize conversation is difficult for him because of his sever hearing loss, but still!

Huggs to you, Kelinas.

 

[missy]

I need ideas before I go insane.

What do the elderly do for fun? I can't for the life of me, figure out anything fun or productive for my father to do outside of the house.
It's driving him crazy and it's driving me inland insane.

Tonight's been one of the most trying nights of the last 2 months.

Kelinas, I'm sorry you and your dad are dealing with this. So stressful. Does he enjoy car rides along scenic routes? I always enjoy those and you are out of the house but sitting comfortably in the car. Soothing and enjoyable especially with some good music on the radio.

How about card games? Does your dad enjoy those? Are there any senior centers/activity centers near you where perhaps he can meet with a few people of similar age and play card games or even bingo? That would get him out of the house and mingling with his peers.

Does he enjoy reading? How about a book club (with older people or any age group even) if one exists near you? Have you checked with your local church to see what senior activities might be in the area? Perhaps you can find something suitable that way.

Then there are museums, libraries (as VR pointed out), botanical gardens, to name a few off the top of my head where you both can spend some enjoyable quality time together.

Does your dad enjoy swimming? It is great exercise and there are probably a few indoor pools around you. Maybe at the local Y or gym? My MIL swims three times a week and it keeps her in great shape and keeps her active. Maybe your dad would enjoy swimming a few times a week?

Now that I think of it my MIL is very active in her church. Would that appeal to your dad? To belong to a religious organization where he can spend some of his time volunteering? Or any volunteer group? What does he enjoy and what cause is he passionate about? For example I would volunteer at an animal rescue organization if I had a lot of spare time. Would that be something that could appeal to your dad? There are always volunteer groups that need help.

Wishing you and your dad lots of good luck and sending big hugs your way. (((Hugs))).

 

[CJ2008]

Sorry Kelinas that's tough.

How about movies? I mean not that he can go to movies every day...but it's something.

The other thing I keep thinking is something with animals...what about going to like a local pet shelter and spend time playing with/petting animals? (assuming he likes animals).

 

[junebug17]

Hugs Kelinas, it can be hard to find things to entertain elderly people.

If my mother was more willing to leave the house, I'd probably take her to a coffee shop or a local restaurant, just for a change of scenery and to break up the day. Would he be interested in going to a mall? Or maybe just a drive around town as missy suggested. How is his mobility?

 

[AGBF]

My situation is very different from that of most of you. I live in my father's house with him, my mentally ill daughter (who is 23) and our Newfoundland dog, Griffin. I am the only one who does any work except for someone we hire. I have currently hired someone to help clean and organize and help with my father for about 15 hours a week. It helps, but it isn't nearly enough since he is going downhill and my daughter doesn't do well when she is under stress (which she now is because she is taking two classes at community college). If I leave here to take her to school, my father gets neglected and doesn't get meals. If I leave here to go to Virginia for a doctor's appointment as I did this month, I have to make elaborate arrangements with paid help; my brother, who has to take time off from work and come down; etc. I can only be gone for one full day and part of two others. I have to leave detailed written instructions. I have to be available to my daughter at all times on the phone, And so forth.

One day I came in and found my father sitting at the kitchen table in his underpants. He asked me if I could find him a pair of swimming trunks. He usually wears soft, flannel pajama bottoms with a drawstring waist around the house. I asked if he was hot. He said he couldn't find any pants. That sometimes happens. He hasn't had a stroke and doesn't have Alzheimer's but he has some dementia. Sometimes he forgets where his clothes are. So I closed the curtains and brought him some pajama bottoms and new slipper socks with traction. He needs to change the pajama pants a few times a day. This is relatively new. Within the last year. What made me think of this is missy suggesting that swimming is good for the elderly. Just a year ago he went to the YMCA seven days a weeks and did a full hour of aerobic exercise in the pool with a flotation belt on. He was written up in a local magazine. But when he turned 95 he had an episode of pneumonia and weakness that seems to have laid him low.

He used to read books and drive himself to the pool and go to the store. Now we do not let him drive. He lies on the couch all day and is weak and has trouble walking (as he did when he went to the pool). But all he does in read, "The New York Times" and listen to classical music if I put a CD into his Walkman for him. (He loves string quartets.) He does love food and coffee, so I push myself to make him fresh coffee, which is a chore for me at times. He weighs only about 120 pounds, but he has a fabulous appetite and will eat three big meals a day if they are prepared and put in front of him. If you ask him what he wants to eat he always says he he is too full to eat, that he is, "stuffed". So I never ask. I always just tell him it is time for a certain meal-whichever one it is time for.

Sorry for the babbling....

Deb

 

[Amber St. Clare]

How timely that this subject re-emerged today after I had a long talk with MIL this afternoon. She is feeling very sad and hurt that some of her sons are, in her eyes ignoring her {I agree with her, but didn't say so}. She is worried about her reliance on me and my husband and is afraid we will "get sick of her". She's almost 86 and has been sad and in a depression ever since we got her the "I've fallen and can't get up" button. I've been dealing with health issues myself and find myself silently resenting my BILs and their wives. I am going to have a SERIOUS discussion this evening when R comes home. It's time to involve the others.

Hugs and a shout out to all of you who are in a similar situation.

 

[VRBeauty]

orry for the babbling....

Deb

Deb: I'd be babbling too, in your circumstances.

I'll try to write more later.

 

[VRBeauty]

I have to admit that there are times when I'm angry and resentful about providing the bulk of the live-in time with my father... and, I feel bad about that. My parents truly sacrificed for us kids. especially when we first moved to the U.S. I see this as my time and opportunity to return the favor - not that anybody is keeping score. But the cost is the deterioration of my own home and social life. The latter is not as frivolous as it sounds: I have just a handful of good friends and the recent death of my closest friend tore a huge hole in my social safety net. Fortunately my father is recovering from his recent surgery fairly well. I hope he'll graduate from needing full-time assistance soon, which will give us some breathing room.

 

[Circe]

Thank you so much to VRBeauty & JuneBug for pointing me towards this thread and other forums... and my deepest, deepest sympathies to all of you for what you've gone through with your loved ones. It's all so hard, and there's so little in the way of accessible resources out there (prior to giving in and asking over in F, H, &H, I'd spent literally a week trying to Google to find something that would be even moderately useful).

I have a slightly odd question, as far as I can tell - or, at least, it hasn't come up in any of the books I've read, or any of the online articles or threads that I've come across. It is: what do you do when your parents refuse to listen to your advice, even when the choices they're making might endanger them? The available texts all read like it's NBD ... but at least with my parents, it's always been impossible, and neither their age nor their health seems to be affecting that.

My father had a bad stroke a few months ago, and though his time at a rehab center has helped him, he cannot walk without physical assistance. Both his long-term and his short-term memory are shot: he recognizes my mother, to whom he has been married for 45 years, as someone important to him, for example, but not as his wife; when I visit I remind him he has grandchildren ... several times each visit. That sort of thing.

My mother hates the rehab center, and flatly refuses to seek out a nicer nursing home. She's determined to bring him home next week, I think because she just WANTS everything to go back to the way it was.

My mother has pretty serious mobility issues of her own, walks with a cane, and has dangerously high blood pressure. She also hates change, and won't so much as let me safety proof the place.

I've tried everything: these last two months have contained at least one difficult conversation-verging-on-argument every day, during which I've reasoned, I've pleaded, I've even gotten her to agree ... but every time, after a day or a week or even a month, she reneges and reverts to the desire to bring him home and care for him herself. And she *can't* - not only is she going to be physically unable to lift him, but because of the high blood pressure she gets easily frustrated at things that he can't control, and given that watching her reactions raises *my* blood pressure through the roof, I can only imagine what she's experiencing.

Has anybody dealt with anything like this? She's planning to bring him home five days from now, and I'm seriously anticipating a phone call about somebody being seriously hurt inside of a week. Help?

 

[junebug17]

Oh my goodness Circe, you must be completely stressed out over this. I'm really sorry to hear about your father's stroke . I too have a very stubborn parent and it makes things very difficult, obviously. I don't think your situation is that unusual, unfortunately. Clearly your mother is not going to be able to handle caring for your father by herself. My mother has mobility issues that don't sound as severe as your father's and my brother and I are able-bodied and we are struggling! Caring for an elderly relative is draining, exhausting, frustrating, and very stressful and your mother has no idea what it's going to be like. Given her own physical issues it's going to be that much worse.

At the very least your mother is going to have to have a caregiver in to help her. How is your mother planning on lifting him, bathing him, and helping him move in general? Have you addressed these specific concerns with her?

Off the top of my head, I think I would start with the rehab center and tell the social worker and team your concerns. You need to get some people on your side; explain to them how serious this situation is, maybe they can work with you to impress upon your mother how hard it's going to be for her. Tell anyone who will listen. My mother had a stroke 5 years ago, and before she was released there was a family meeting where concerns and problems were discussed, that would also be an opportunity to voice your concerns. I think I'd contact the social worker, or whoever is heading your father's team, asap and speak with that person about this. I can't imagine the rehab center is going to approve of the plan of your mother caring for your father on her own, although legally I'm not sure they can actually stop it from happening if she insists.

When my mother came home, medicare provided a physical therapist for 2 weeks and she inspected the home to make sure it was safe for my mother. Your mother will probably have to undergo this scrutiny too.

My only other thought is to let her try it, I'm sure she will very quickly come to the conclusion that she won't be able to care for him properly. But I would do everything possible to prevent this from happening.

Right now my brother lives with my mother full time and I come 4 days a week to relieve him. He is at his wit's end and I am planning on having my mother live with me - with help in all day, 7 days a week. No way could I do it otherwise.

These are just my first thoughts - I'm thinking you should also post on the forum I mentioned, I get the impression there are some pretty knowledgable people on there who know the ropes.

ETA - I'm thinking it will help a lot if the rehab staff speaks directly to your mother about all of this - chances are it might carry more weight coming from someone in "authority"

 

[telephone89]

Circe, I agree with you, that sounds like a disaster waiting to happen. Maybe you can compromise and say if she wants him at home that they need a nurse there as well? IDK the pricing difference between a nursing home and a nurse, but it might appease some of the worry.
*hugs* to you, that is rough. I'd probably take junebugs advice on getting everyone else on board with him staying in the rehab center first though. That is the ideal situation really.

 

[junebug17]

Sounds like it's an option for him to stay where he is? I'm going by my mother's experience and Medicare would only cover a 2 month stay, so at the end of that period we had to make other arrangements. Although I guess she could have stayed longer if we paid out of pocket. I'm hoping the rehab center can impress on your mother she can't do this by herself and can talk her into at least having a nurse/caregiver help her, or else find another facility.

I believe a nurse is less expensive than a nursing home.

 

[canuk-gal]

HI:

Circe, my heart goes out to you. Healing vibes your way!

JuneB addressed many things I would have said. Medical staff/team have to sign off on before any discharge takes place and in my experience none are willing to do that when SAFETY issues are at the fore. Safety for both family members. Further, my Mother's home required an inspection prior to her being discharged from rehab and all the refurb of her home needed signing off. If anything hadn't been done, she wouldn't have been released.

I also agree that the transition nurse/social worker should be contacted and you could have a chat with them to express your concerns. Rehab facilities are accustomed to dealing with these issues--facilitating transitions--so it shouldn't be a surprise to them you are interesting in getting up to speed on what to expect.

I also suggest that a team conference may need to be set up or redressed. What your Mother may have understood, comprehended, etc maybe much different than your understanding and that of the medical team. I find a lot of the information gets jumbled between and amongst families and the medical teams. For example when my Mother had a hemorrhagic stroke--she told us point blank, that she would be able to drive upon discharge. None of us (4 daughters) heard or understood that information and the Neurologist who was present, of course, said that would not be possible. Yet that was my Mother's "take away" from the conversation. There was considerable frustration all 'round. Best to get the facts, where you can.

I know you mentioned that your Dad's memory is suffering--but can he answer for himself? Does he like or mind where he is and would he stay? What is his opinion?

kind regards, Sharon

 

[Circe]

Aaaaaand this is why I missed PS - you guys are considerably more articulate, invested, and just ... better ... than the ones on any other forum I've ever had the luck to stumble across.

Junebug17, Telephone89, Canuk-Gal ... I can't tell you how much I appreciate your weighing in.

But. My problem is that I've tried absolutely every reasonable option.

When the rehabilitation center decided that my father's recovery had progressed as much as it could, because he wasn't cooperating, I did multiple appeals with their insurance company. I enlisted the rehabilitation center's social worker to the point that (bless her) she stalled my mother for an additional week - after the month I bought with the appeals - sadly, to no avail. I got her to visit an eldercare lawyer who had been through something similar with one of her own parents, and she convinced her temporarily ... but it's come back the same thing half a dozen times now, and with the 22nd coming on fast I'm literally stumped.

JuneBug, thank you for offering such good suggestions. With anybody else, I feel like they'd work! But with my mom ... nope. She just decided that the social worker was against her. I believe she is going to get a visit from a nurse coordinator the day *after* my father goes home (that first night genuinely frightens me). And I believe Medicare will send someone out, but judging from what the social worker told me, similarly to your mother's situation, it will only be for a couple of weeks, and probably only for four hours or so every other day. After that, my mother will have to hire somebody, but she has this idea of my father approving of them. It's a sweet thought, but as far as I can tell, right now he doesn't like *anybody.* So I have my doubts about how well that's going to work.

BTW, I just want to take a moment to tell you how much I admire what you and your brother are doing. I wish I could help my parents to that degree, but I live in a typically proportioned place in NYC with three kids under five in a residence with three levels and steep stairs that neither of them could navigate *before* this happened. And frankly, logistics aside ... I don't know if I *could* do the personal care-taking to the degree required, and I'm youngish and fairly strong for my size. My highest hope was that I could convince my mother to let me find my father a nice nursing home somewhere out here in Brooklyn - he needs to much assistance to qualify for "assisted living" right now, which is a wee bit ironic - and find her an apartment nearby so she could visit him every day, and I could visit more often than my current couple-of-times-a-week regime. No dice. As you say, I do wonder if actually going through with this will bring home to her exactly what it is that she's proposing to do, and that she'll have to consider the alternatives. It's just that having to do all of that under the immediate pressure of them both being at risk is going to be considerably harder than doing it with a little lead time would have been. I suggested we take him home for a one-day visit just to see how he'd react, and whether she'd feel up to it, and she refused: she felt it would be cruel to him. I get what she's saying, but I worry this could actually be worse, if one or both of them get hurt.

Thank you, Telephone89 - I could NOT agree with you more. The problem is that my mother isn't big on listening to me. Unless I hit on some new approach it isn't going to work. For example: I spent 15 years trying to convince her to treat her diabetes, from when she was diagnosed when I was 15 to when I turned 30. Nada. She only started treating it 7 years ago when she started to have trouble with vision and mobility and by that time, a lot of the damage had been done. It's like she assumes I'm being fanciful when I point out inevitable consequences, perhaps because she still thinks of me as a/her child, as opposed to a competent adult? That's really kind of the root of my question: do other people have any scripts or techniques or anything that has worked for them with unusually stubborn aging parents?

Sharon, thank you both for your kind words and your suggestions. I don't know if regulations vary state-by-state: I've shared my concerns with the nursing home and the social worker assigned to them, and they say they can't do anything about it, even having seen for themselves that she has her own physical limitations. I don't know what will happen when the nursing coordinator comes out, but given that my mother's ignored everybody so far, I don't have high hopes unless there's some kind of an "imminent danger" clause that no one has mentioned to me (and I've asked). I think what you describe about your mother's take-away is very similar to my mother's reactions to this situation overall: it's like she can't or won't accept what she's told when it isn't what she wants. She only acquiesces briefly or not at all, and then it's on to the next verse, same as the first.

My father can express himself, though not consistently. I don't think he'd be considered competent to sign legal documents, for example. But he doesn't like the rehab center and says he wants to go home. I'm just not entirely certain that the "home" he has in mind is the place they've lived for the last 35 years as opposed to, say, the apartment he grew up in as a child, or where they lived when they first married, or goodness only knows what. I don't blame him for not liking this rehabilitation center: it got the best reviews of any of the rehabilitation centers/nursing homes accessible to my mother, but at the end of the day it feels like a hospital, with fluorescent lights and no privacy and the constant company of other people in situations similar to his own, all similarly distressed: it's an unpleasant atmosphere. I'd love to get him into one more to his taste ... but can't, without my mother's consent. It *is* frustrating.

At any rate. Thank you all again for your concern and your suggestions, and sorry for rambling on so much ... as much as anything else, it's a bit of a relief just to vent.

 

[telephone89]

LOL You don't want my advice on a script. My very elderly grandmother (who is not going to last much longer), we generally just tell her what is going to happen. She is not able to take care of herself, her partner passed away recently, and she is in incredibly poor health (cancer now, on top of everything else). We put her into the newest, nicest care center in her area (she is from a small town and wanted to stay in a small town rather than move to the city where it's closer for us). She bitched about it the whole time she was there. So we moved her to the city. She now hates the city, but doesn't leave the center so it doesn't really matter. At least this way we aren't driving 3h round trip to visit. She is being moved again to a higher level of care facility (with the additional ailments she needs it), and we were pretty much like 'Well, you're being moved next month. Is there anything you want in your new place that you don't have here?' She wanted a mini fridge, so we've gotten her that and will move it with her. It sounds cruel, but she would've stayed in her home, chain smoking herself to death unable to go to the doctor. She hates us, but at least I know she is safe and cared for should anything happen.

 

[Circe]

I don't think it's cruel at all -I mean, maybe in that Polonius-like cruel-to-be-kind way, but it is all intended to keep her safe and to make her comfortable. And it actually sounds like you're EXACTLY the person whose script I want. When you say that you just tell her what's going to happen, you just put her into the newest, nicest care center ... how?!?

Short of physically picking my mother up and depositing her somewhere, I'm baffled as to how other people actually get their recalcitrant older relatives to cooperate. And short of physically restraining her, it would be a very short term solution, as she'd just leave. So what's the secret to gaining cooperation, even when it's against their express (if sadly unrealistic) desires?

 

[rainwood]

Circe

It's so nice to see you back on PS, although not under these circumstances!

I'll give you a little of my experience on this so you know where I'm coming from. My mother remarried later in her life so her husband wasn't really a part of my childhood or even adulthood. I was 35 when they married. He was quite a bit younger than my mom, and wasn't interested in any opinions from me (or anyone) on anything. My mother was diagnosed with Alzheimer's when she was 81. I wanted to help, I tried to help, and it was always rejected, sometimes angrily. I'd read in this wonderful column about aging that if your parents are competent to make their own decisions and those decisions would not endanger anyone but themselves, it is their right to make those terrible decisions. That advice stuck with me, but I just couldn't follow it because I felt like I owed it to my mom to keep trying.

Finally, there was one big blowout fight with my mom's husband about getting her an ID bracelet because she'd gotten lost and someone who knew her had to bring her home. I didn't even know about the whole episode - it happened in the place where they spent the winters - until I went down to visit and one of their friends told me and suggested the ID bracelet. The fight was awful - very harsh words were exchanged on both sides - and it ended when he yelled at me that I was trying to control their lives and I yelled back I was doing that because he was taking terrible care of my mom.

After that fight, I knew I had to stop. I wasn't helping, I was just making everyone upset. It was one of the hardest things I've ever done. I felt like I was abandoning my mom, but I told myself that she'd married him and given him the right to make decisions and ultimately there wasn't anything I could do even though I disagreed with many of the decisions he made. When I finally stepped back, it felt like a rock was lifted from my shoulders. And the odd thing was that when I backed off, our relationship was better, and he started to listen more because he felt like I wasn't trying to interfere. He still wasn't doing what I thought was best for either of them, but I tried to support him as best I could. Surprisingly, he died first and I was left scrambling trying to find good care for my mother, the thing I'd been trying to avoid from the beginning. Sometimes that's just the way it ends up having to be.

So that's my basis for saying you are probably going to have to wait until there's a crisis at home and there is no choice but to step in, and find them a different place to live. That's the only thing that will change your mother's mind. You'll feel like you're the worst daughter in the world, but waiting and watching is sometimes our only option. So I'd start looking now for where they should go, find out what they need for admission, make a list of that, do what you can (if anything) in advance, help where you can on your mother's terrible decision to bring him home, and wait for disaster to strike. It sounds like terrible advice, but I know from experience that sometimes it's the only option you have.

Hang in there, Circe, and you're not a terrible daughter if you do what I advise. You're a daughter trapped in a terrible situation that you can't fix because your mother won't let you. They will eventually need your help, probably sooner than later, and that's when you will step back in to pick up the pieces. I know this isn't what you want to hear, that you're hoping there is some way to get your mother to listen, but there probably isn't. The only thing you can do is find peace in the notion that you tried, and sometimes that's all you can do.

 

[telephone89]

Well what happened in my situation was that she got pneumonia and her partner took her to the hospital (she doesn't drive). She has been in and out of the hospital for probably 2 years now. So she was in the hospital, and then her partner fell ill, and was also in the hospital, and passed shortly after. His family was terrible - disgusting money hungry pigs, literally harassing her for money. So we had them banned from her room, but they would still come by. Then when she was 'stabilized' (ie not getting worse), we went to her room and sat and chatted with her. We basically explained that the hospital isn't able to provide for her long term, and that we want her to come with us to the new place. It was open yet, but we had a tour already set up. She said no, and we said, let's go for lunch and we'll talk about it. And then when we were in the car after lunch, I was like oh it's only a few minutes away, we're already in the car. So we went. She didn't love it - even though it was literally nicer than any home she's ever had. But we chatted on the way home. She said she didn't like X, Y, Z. And I said, yeah, but the hospital doesn't have A, B or C. She grumbled a bit and then I said that I would check when their first opening was (I knew it wasn't for a month or two) and she said fine. So, she doesn't sound quite as stubborn as your mom, plus she doesn't have the backup of anyone (your dad) to help her. When we moved her to the city, we'd been applying at places for a little while as she was constantly complaining, and as soon as we heard back we told her that we'd be back in 2 weeks to help her pack up and she'd be in the city.

I guess we've been lucky that she hasn't flat out refused much, or at least that we weren't able to convince her otherwise of. Her biggest refusal was in the nice care center - they had some black staff members and she wouldn't deal with them. Racist old white lady. She told me in no uncertain terms that she would not deal with them, in front of my H (who is brown). I was honestly so mortified that she would say something like that. So we moved her, but I felt it was probably a weight off the staff's shoulders - she was so horrible to deal with I felt so bad for them.

I guess I haven't been on this thread much lately. I was trying to stay away from my grandmother for the most part. She is not a nice person, and my mom was taking care of her, but it became so much for her that I had to step in.

eta - writing it all out, it really sounds like dealing with a child!

 

[canuk-gal]

Aaaaaand this is why I missed PS - you guys are considerably more articulate, invested, and just

Thank you all again for your concern and your suggestions, and sorry for rambling on so much ... as much as anything else, it's a bit of a relief just to vent.

Of course, glad you came (home). Vent anytime!

As a kind and thoughtful person I knew you would have made yourself available to help and support your parents where possible. Keep up the good work, Circe, you are appreciated although it might not appear like that to you now.

kind regards, Sharon

 

[azstonie]

Geriatric social worker. They assess your parent and your situation, they make recommendations you would never even think of, they know how to handle money and insurance and social security and pensions and taxes etc., and they know who the best providers are of EVERYTHING under the son. Google "geriatric social worker" and you'll see many options; include your area and you'll find the locals. Can't recommend enough especially if you are having to cobble together everything for someone who lives in their own home still or in your home.

 

[boerumbiddy]

I posted on this thread earlier when I was caring for my recalcitrant and completely bedridden aunt, who took few if any suggestions and didn't even want to spend money on herself for things like pillows and blankets. With her insurance, she could have gone to one of the nicest and most famous nursing homes in America but refused to consider it. Whatever. It was her money.....

We were very lucky to find a mother-daughter team of infinite patience and kindness who took care of her every need, 24 hours a day, for nearly two years. And I do mean every need. Let's just say she refused to use a bedpan! Her visiting doctor said her health was as good as it could be under the circumstances. Good nutrition, clean, no bed sores. And she surely knew her own mind.

So there she stayed in bed in her own little apartment until one evening she had a good dinner, turned to her aide, said "It's all right," and fell unconscious. Her heart was briefly restarted and she was put on life support (which she did not want) at the hospital. When I finally found the document that let them turn off the machines, she died the next morning. She didn't spend all of her money, which seems to have been her major goal, and she didn't have to move out of her apartment. I guess I am glad I was able to help....I stand to inherit a small amount of her left-over money but I wish she had spent it on herself.

You know whom I miss? The faithful aides.

 

[junebug17]

Circe, thanks for the additional info. Trying to get an elderly person to do what's in their best interest is something my brother and I have struggled with for 5 years. Honestly, for things that aren't' a matter of life and death we have just given in when my mother has refused to do something. An example would be going outside for a little while every day. She cooperated for a while and then just refused so we gave up. We tried to get her to do things to help her stay a little stronger physically but she refused. The fighting and cajoling became too exhausting for us. All she wants to do is sit in her chair, sleep, and watch tv. She hates taking a shower and will refuse. I feel this is one of the things I cannot give in on and the other day I said calmly but firmly "If you don't want to take a shower, I'll have to have someone come in to give you a sponge bath. S and I could be considered neglectful if you don't keep up with your hygiene." She totally doesn't get this because she thinks she's perfectly fine and we just worry too much. :roll eyes: She took the shower, though. Did I feel like a bit of a sh*t? Yeah, I did, but I got the job done.

I thought a little more about my experience with my mother, and now that I think of it, at the family meeting at the rehab center nobody on the staff seemed that concerned or asked about what arrangements we made about caring for my mother at home. The focus of the meeting was that she was ready to be discharged. As I've said, the pt checked the house and we showed her the modifications my brother made, but I wonder what would have happened if the pt felt the home wasn't safe for my mother.

I am facing a somewhat similar dilemma to yours in that it's necessary for my mother to come to my house and I know she is not going to want to. My sister and I have talked and we are going to present it to her that she is definitely going, it's just a matter of when. I have been thinking of what I will say and I've come up with this. "Mom, S isn't doing very well right now (will list the issues he's having) and he's just not able to give you the help you need with certain things, so you're coming to my house for a visit to let him get some rest and take care of himself. I plan on having someone come in to stay with you when I need to go out because I'm not comfortable with you being alone in the house. I know this is a big change for you but it's the best decision for you and S." I will refine this but it's the gist of what I will say. I know this is going to be a major blow to her ego because as I've mentioned, she thinks she is doing just fine and only needs a little help here and there. I don't know whether it's dementia or a very strong case of denial (which my mother has always been a pro at, even before her stroke). Now, here's the million dollar question - what do I do when I show up on that fateful day and she refuses to budge? As you said, do I physically carry her out the door? My sister and nephew will be there as well, so I'm hoping that their presence will make my mother more compliant. But I honestly don't know how this is going to go.

You have a somewhat different dilemma though, in that if my mother does refuse, it's not an emergency situation and we can regroup and figure something else out. But it's unsafe and unwise for your mother to be completely responsible for your father's care so there's a bit more urgency to your situation. As much as it pains me to say this and I know you will be a nervous wreck, you might not have much choice but to let her take him home if you can't get through to her. As I've said, legally I don't think there's much you can do to intervene, short of petitioning the court to make you your father's guardian and who knows if that would even work. Hopefully the nurse coordinator will quickly see the idea of your mother caring for your father at home is not going to work and will set things in motion.

Thank you for your kind words…my brother is single, and I am 55 with grown children so it's been manageable for us to care for her, although I admit it has changed my life and I sometimes feel my family life has suffered over the years. My kids are in their 20's and still do need some of my time and attention and I have been taking care of two houses for the past five years. The suggestion of a nursing home gets bandied about but I'm not ready for that step yet, although I acknowledge it's a possibility down the road.

You are a wonderful daughter who obviously cares very much about her parents - they are SO lucky to have you in their lives even if they won't admit it! I hope you find some comfort in the fact that you are doing all you possibly can to make sure they are both safe and well cared for. I totally empathize with your situation and understand the stress you're under. Please keep us posted if you can, I'm going to be keeping you in my thoughts. (((hugs))))

 

[Circe]

It's been a bonkers couple of days so I haven't had a chance to write the kind of in-depth response I prefer, but I did want to say:

- I've been reading everything you've have been saying, and it means so much to me that you're willing to share what (I know) are trying experiences. I'll be responding soon, once everything in my household settles ... my husband was away last week while I was dealing with all this, and once he came home, my otherwise well-behaved children apparently thanked the Lord that The Nice One was back and promptly ran riot.

- I started seeing a therapist a month after my dad's stroke, and today is the first time I actually talked about anything else with her. She asked what had changed, and when I explained she said she wished everybody had a community like this to fall back on. So ... professional affirmation, y'all.

 

[junebug17]

Circe, I'm glad that posting here brought you a little comfort and relief, I'm comforted too when people share their experiences and I realize I'm not the only one dealing with aging parent issues! I really rambled on in my reply to you, sorry I have a tendency to do that. I'm keeping all of you in my thoughts, please give an update when you can as to how things are going. (((hugs)))

 

[VRBeauty]

My father still needs someone in his home with him more or less around the clock. He doesn't need someone here every minute of the day, but he's not well enough to be on his own all the time, and he's not driving yet, and he needs someone here to ensure that he gets enough nutrition. For the time he was hospitalized 4 1/2 months ago, it's been pretty much me and my middle brother providing all of this care. Two of my SILs (my oldest brother's widow and middle brother's wife) have stepped in for a few days at a time here and there. Youngest brother shows up once a month and stays for one night. That's all. Each of us kids lives two hours or more from my father's house. I'm recently retire, and my brothers are still working, so I'm OK with putting in more time. But I don't want to be away from my own home and life more than half of the time.

It took a while for me to figure out what to say and how to say it, but tonight I finally did it - I called my youngest brother and told him that he needs to step it up and put in more time at my father's house. I can't force him to do anything, of course, but I hope I appealed to his sense of fairness. In other words, yes, a bit of guilt tripping was involved. Now, we just wait to see whether the discussion makes any difference...

I don't think my father will need a round the clock presence for that much longer, but he does for now. When he does "graduate" to where he can live alone again, he will probably still need one of us to be here one or two days a week to prepare food and help with home maintenance etc. I'm really hoping we'll get to a point where the three of us are splitting that time more or less equally.

 

[junebug17]

VR, good for you for speaking up, I know it's kind of awkward and you can't force your brother to do more but at least you've made him aware that you and your brother really need more help right now. Hopefully now that you've made your brother aware of the situation he will pitch in more. Sending lots of recuperating dust to you father!

 

[Kelinas]

Things are looking up in my neck of the woods.

The VA hospital finally saw my father (a grueling 3 month wait - disgusting that this is how veterans are treated after dedicating their lives to the country) and the appointment took 7 hours. Found out that his health is remarkably good, all labs came back clear and chest x-ray was also clear. He has a colonoscopy and a sleep study scheduled in 2 weeks.

I just recently took part ownership in a local business that requires 60 hours a week so after long consideration, I've decided to move into a 55+ community. I've fought over the concept of "embarrassment" of being a 28 year old in a retirement community but I can forgo everything if my father's quality of life gets better. (I can live there since I'm considered a caregiver)

The community consists of 3 chef cooked meals a day, housekeeping weekly, 24 hour medical assistance, all inclusive, plus an insane amount of daily activities.
There will be people who will listen and join in on war stories, and who knows, maybe even a companion

It means I can go and spend the weekend with my bf and not worry about my father falling or not eating, so ultimately, its peace of mind for me!

Update on my pitiful excuse of a brother: he "can't take Dad because his wife's parents are staying with them until their condo renovations are done"

Yea big bro. You keep avoiding seeing your own father. He wins son of the year.
I hope he stubs his toes.

 

[junebug17]

That's great news Kelinas! Wow, you found an excellent solution. Your father will be looked after and have company as well. And you will have peace of mind and a chance to live your life a little. So glad to hear he's in good health - it's a shame he had to wait so long for an appointment and I agree our veterans deserve better treatment. You are doing a fantastic job caring for your father and providing him with a good life. Sorry about your brother, it's sad and frustrating when family members don't step up to the plate.