Parents Caring for Parents Support Thread (Part 2)

Parent Cafe
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Here is the Medicare information: Home Health Services Coverage. If the patient has a supplement, covered services will be free after the annual deductible. If no supplement, there will be a 20% copay per service after the deductible is met (although there may be some services that are 100% covered). If the patient has an advantage plan, you have to check with the plan regarding coverage.

I had questions about coverage for CPAP for a patient who was on the machine before Medicare. The information in the Medicare website didn’t answer my questions, so I just googled until I found my answer on a website for a hospital medical group. You can do that if you have questions beyond the info on the Medicare website. Or if you have an agency for older adults in your county, you can contact them. Our Area Council on Aging can answer a lot of Medicare questions.

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Maybe this should be on the “Say it here
.” thread?

How many of have siblings who (finally) came to the realization over the holidays that maybe the elderly parents really shouldn’t be iving independently at this point in time?

Raising my hand! My brother finally paid attention to the things I’ve been saying for years.

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Not sure how I feel about this. Yesterday my 92 year old father, who has been in a nursing home for just about a year, tells me he is deteriorating. Not sure if he meant physically or mentally. He really is in decent health for his age. He has mobility issues (uses a wheelchair), pain (bad shoulder joint), and some dementia (which varies day to day and is sometimes pretty bad).

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The last years of his life, on occasion my father would take to bed and announce he was pretty sure he was dying. It’s very unnerving. It was also incorrect, but he wasn’ used to limitations and it must have been hard to adjust even a little.

I think elders need to be heard on their terms, so that kind of comment is the on-ramp to just a good listening. “What worries you” or " what is your goal right now" became useful questions.

My mom often says she wishes she could just die. After I tell her she’s been through a lot so of course she might feel that way, I ask her what bothers her the most. She seems to need to say it all but I’m with you on not knowing how to take it. I always tell her that she is the family lighthouse and even if she needs our help, we are privelaged to give it to her after a life of her giving it to everyone else.

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My dad wanted to stay alive to make sure my stepmother was taken care of. When he was in hospice in the hospital after a hemorrhagic stroke, one of the things that helped him let go was telling him that her son (who lives in Colorado; dad and stepmother in Long Island, NYC suburb) had stepped up to the plate. Also he wanted to know that my daughter was happy with her college choice. As soon as I left him after giving him that information and telling him I would be back in the morning, he passed away.

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He has been depressed before (in his assisted living facility especially during COVID lockdown), and said things like why am I still here. This was not that (maybe the anti-dementia medicine is helping his state of mind.) I think he is seeing that he can do less than he used to be able to do and commenting on it. I always answer stuff like this with - they are taking good care of you, etc.

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My FIL fought hard against dying because he and MIL apparently made a pact that she would die first. H & SIL had to convince her to tell him she would be okay if he had to leave; after that, he seemed to be at peace & died the soon afterwards. He really needed that reassurance.

I’ve mentioned here before that my MIL just wants to die. She is 96 and has very limited mobility. She is bent forward 90 degrees at the waist, she has reverted to more or less being a young toddler in terms of awareness of her bodily functions so has frequent accidents, she can’t see (refuses to go to the ophthalmologist) or hear (wears her late H’s 10 year old Costco hearing aids, which don’t seem to help her & won’t get her own), can’t focus to read or even watch tv (other than game shows 
 at a volume of 35+), doesn’t eat much (and no fruits or vegetables), only rarely leaves her room in AL & has only left the facility once in the past year, and I could go on & on. She’s just plain done with being stuck in her body, and she asks on a regular basis for God to take her to her H. It’s heartbreaking, and it’s draining on my SIL who lives nearby. But as my H says, it is what it is. We do our best to lift her spirits when we visit, but she really is just “done.”

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Look at that laundry list of ways her life is different and hard. Day in, day out 
 I can understand to a degree how she is ready to be done. :broken_heart:

Sometimes I think because WE are ok and seek to hang onto our elders - especially our parents - while they love us dearly, living for those few moments in a day or week they may spend with us isn’t enough to keep life worth living. It’s hard, both sides.

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My mother (fearfully, reluctantly) agreed this morning to coming to stay with us for two weeks, so Preferred Sibling and his wife can take a trip before wife’s next round of chemo, and Local Sibling can have a break.

I told her it isn’t a stealth plan to un-house her. She’ll have her own bedroom, closets, and bathroom. I also told her there’s a 7-day minimum and after that if she is unhappy or stressed, we will take her home without judgement. Fingers crossed!

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This seems like a good step - and a good “trial” for her to be out of her comfort zone, her home.

I hope you both can feel at ease from the start and give each other space where/when needed! Does her bedroom space have a chair or small set up where she can sit and read or watch tv or something on her own - if she doesn’t want to mix with the rest of the household?

When my mom would come to stay overnight I always felt like I had to “entertain” her and could not settle into my normal routine. It made it awkward - for both of us!

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It doesn’t have a tv, but it is down its own hallway with a door. Her room has a desk and a chair, we will work on a little dresser if I can find one. Does have a closet, and a huge closet in the hallway (all are empty). Her bathroom is just for her, and it’s only DH and me here so if she wants to be left alone that’s pretty easy. We used to stay at camp with her and Dad (me, DH, our kids) and learned that everybody needs some time alone.

I’m more worried about her being bored than anything else. SHe’s worried about having a medical emergency , which is fair but unlikely to happen. I started a list of things to get before she arrives at the end of the month

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This is more of a vent, so apologize in advance. Mom is 93 and lives in a 2 bedroom apartment that she and dad downsized to about 10 years ago. Dad has been gone 4.5 years, but mom has done well alone. She still drives, just within a few miles for groceries and some appointments. Her sister and I convinced her to move to a retirement community around the corner from her apartment where one of her friends moved.

While she knows she needs to move for the cost, she is now having a really hard time with it. The downsize 10 years ago was hard as she had to get rid of many things-furniture, kitchen items, etc.., things she loved. Now, she is having to give up what little furniture she has as the place is tiny. She is more upset with getting rid of things than the move itself; she knows she doesn’t need to be in a 2 bedroom, but the new place has a small kitchen, very little closet space, and a small bathroom. She says she won’t have room for all of her toiletries, kitchenware, food and clothing. It is a daily complaint to the point yesterday I almost lost it. I called my aunt and said I think we should just leave her in the apartment, and when she runs out of money we will figure it out then.

We all know she will be happy once she gets there and settled. She will be able to go downstairs for meals and be with others; they have game and movie nights as well as organized outing. She won’t have to drive to the grocery store as the bus goes 4 times a week and has transportation for doctor’s appointment. Right now she is home alone when not having dinner with one of us, just watching tv and playing games on her computer.

I am having a harder time dealing with her negativity, and I am afraid I will blow up at her. I am holding my tongue, but after my husband’s illness and recent death, I don’t have enough in me to do this daily. My aunt, who is a very scattered person is also helping with this move; she and I commiserate, but at times she drives me crazy also! We are trying to let this stage blow over and hope mom will settle down in a few days.

I decided for my own sanity, I am going to pay for packers before the move as I am not sure I can do it alone. Getting the items out of the apartment that she isn’t taking with her has been a task in itself. All of dad’s things are still there, so that has been the first clearing; I am sure that in itself has been hard for her as she wouldn’t let me do it after his death, and then it never happened.

OK, I feel better now that I typed that out; thanks for listening to my rambling! :wink:

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I’m so thankful we hired a company to assist with Dad’s move to his facility. It took so much stress off of us! I hope the move goes well.

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@snowball just wanted to say I’m glad to see you posting even if it’s venting - I was thinking about you recently and didn’t notice you here for a bit - you are still in my thoughts and I hope you (outside of your mom’s issues) moving along in an “ok” manner.

There are so many cool storage, shelf, options these days for “stuff”. Maybe your mom can be shown some shelf wall units or something that will give her some hope that she can have SOME of her “essentials”.

I also think it’s ok to be frank. “Mom, I want to see you through this move, but being honest, I am still processing, grieving, and adjusting after H’s death. Some days I may need to walk away from the conversation around your move because it’s just too much for that day”.

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Hugs @snowball - that sounds hard. It sure is a good thing there was an initial downsizing. If you (or a sib) is local, perhaps you can volunteer to take a few boxes of stuff for her to ask for as she needs it (though she may not actually need it as much as she thinks).

Question for the group: any experience with a “care team meeting” at rehab/nursing home? I assume it is same thing as “care meeting” discussed at this link.

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We had a care team meeting when my mom was in skilled nursing. They had all the people working with her make reports about her progress and anything they noted in caring for her. It included her MD, PR, OT, speech therapists. It lasted a while until everyone had to get back to their other patients. My. siblings attended so there were a lot of us present.

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@snowball what you are describing is exactly the reason my husband and siblings are not insisting that their mom move out of her independent living house and into an apartment in her CCC. No one wants to deal with another move (there have been 10 since 2011
I’m not joking) or the necessary purging of things that don’t need to be kept (and no one wants, and MIL doesn’t use).

Just take a deep breath and take care of yourself. I think hiring movers is a great idea
for the packing. I did that with my mom when we moved her here. But she also wasn’t IN her place while that packing was taking place, and I got rid of a LOT of stuff that needed to be tossed.

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The company we hired helped go through everything. They got a plan of the apartment and helped Dad figure out where he wanted everything to go. Then they moved stuff and put it all in place. They asked that we get him out of the house on the final day. They let us know when everything was set, and we walked in to a beautifully arranged apartment. It was heaven. They also packed up a bunch of stuff and mailed it 2,500 miles to me.

It was good having an independent person helping. “I know you’d like to put five paintings on that wall, but they really will look crowded there. Can you pick three that are your favorite?” Much better coming from Brian than MLH, ha.

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@snowball we used a storage space transitionally. That way my mother didn’t feel like she lost things. This was for things she absolutely could not give up, which could be odd things like moldy plastic chaises that reminded her of her pool. I slowly got rid of things. (It got easier when her dementia was worse: I told her all her stuff was upstairs and she could not make it up there!)

@Colorado_mom as I remember my main goal at a meeting was to prevent discharge prematurely. They have to show some progress to continue to get coverage and I observed her more than they did. After that, plans for where to go and how to be safe.

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Hugs @snowball

My mom was similar. She admits moving was the best thing she did but it was definitely kicking and screaming!

My husband is the most patient of men and he was at the end of his rope.

It was a difficult time and I’m so glad we are at the end.

Like your mother, my mom had financial difficulties which precipitated moving. She owned her home and while she could pay day to day expenses, the long term issues of house maintenance were becoming increasingly apparent.

Now I wish I could get my in laws to consider moving. They don’t have financial issues but day to day upkeep is very difficult.

It’s your mom’s way of digesting the move. And change in her life. Which becomes more difficult as we age. Try to ignore the negativity. It’s the only thing I could do. And keep my sanity.

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