My in-law has finally come to the conclusion that using the walker is a good idea. It took many falls to convince him. He has spent months now going to the wound center each week as his wounds heal. He keeps getting new ones so we aren’t sure when he will be released from the weekly visits. The wound center also ordered a home health nurse who comes twice a week to change the bandages. He had been good about not taking a bath but when I saw him Sunday he said he took a bath with baby oil for his dry skin. Tell me how that sounds remotely safe.
Cognitively he’s better each week. The bad side of that is he’s bored and when he’s bored he can be dangerous. He booked a hotel for them a 4 hour drive from home. He wants me to book a campsite where he can take his huge trailer. That’s crazy on many levels. Today he wanted to drive two hours to a restaurant so he could have a sandwich he likes. He compromised and will drive to our city and my husband and son will drive the rest of the way. His appetite is nonexistent and he’ll likely eat two bites. It is huge that he’s letting my husband drive partway. He doesn’t think his driving is bad.
My MIL knows his driving is bad but won’t tell him. Her solution is to let him drive but she goes with him. Not sure the logic in that.
We get notices when he has a new record in MyChart. This has been great as we can view bloodwork, after visit summaries and upcoming appointments. The only doctors it doesn’t work for are his lung Dr and the internist.
We started H with a geriatrician who everyone has reported is excellent. She has her office administer cognitive tests and also talks to me (caregiver) and H to see how he’s doing. She sees him every 6 months. We decided it would be a good addition because H was seeing SO many different specialists it was making my head and his spin! We had thought she’d help us keep them organized but she sees her job as different—helping us figure out what types of help are needed and to be sure that the are obtained. She bought a unit at the CCRC that allows you to buy a unit (and rent it out if you don’t want to live there yet). It’s the only CCRC I’m aware of in the state that allows people to BUY instead of leasing/renting.
She does ask us about or plans for when living where we are becomes too difficult and we told her we have a 2-bedroom condo that is very walkable and we can catch ride-share or taxi in the event we find it too hard to handle our house. Our home and condo are both all one level. She also says that once she determines that H has dementia, she will tell him he cannot drive. Anyway, we like her and have met with her twice so far. The 1st visit was for 2 hours!
update here:
Yesterday my father walked (with a walker). Many steps, around the house. Today, he is insisting he didn’t, and that he’s never getting better and he’s just waiting to die. He’s also back to being awful to my mother. I know this will pass, but I think it is fair to say we all want off this crazy ride already.
Getting mom to use a walker was a challenge for us too, but once she started, she remembered and we kept it handy for her. Sorry your dad is being so challenging.
Toured a memorycare facility 6 minutes from my house. Crushed by how comprehensive and thoughtful it is, how happier Mom could be, knowing Local and Preferred will never agree to move her, and she would only agree to it if I asked her to (and then her being away from family — I do not count — would be all my fault). And that would be if we asked before she gets worse.
Cried the whole way home. Would not recommend. Sigh.
Things change. It’s good that you toured the place and like it as an option.
Perhaps an interesting aside…
When I first looked for a place for my Dad and his wife, there was one (A) I liked far better than the other (B).
When they needed another type of care, I suggested B. My brother (the POA) would not entertain B because I had not liked it. Not true. I didn’t like it as much, the first time around. It would have been acceptable when we needed to find a different place.
Moving them away from A or B, they would need new doctors and we didn’t have a good cadre of relatives to check on them. That would be C.
In the end, my brother insisted on sending them to “C” a place he had not seen in person (only via Zoom) and my father passed after 3 weeks in the new location (C).
@greenbutton sorry to hear about the stress of your mom and interactions with your siblings. As well meaning as they might be.
One of the hardest parts of mom aging was dealing with my sibling. We had very different ideas of how to handle things. I got quite upset and so decided to stay out of the decisions. There are only so many captains and so many directions.
Very true, and I know they mean well. Or at least, have a POV that is valid even if it isn’t mine. They are thinking she’s at least safe, and can see several family people even if it isn’t super often. They are thinking if she was here, they’d have to travel, and they simply do not want to, and do not see why they should have to just so I feel better about the situation. More or less. So I get that it is my concern about her QOL and also my emotions about a lifetime of being 20% of any decision.
Yet she called late today (hurray she used a phone successfully) wondering what this "second bed " was doing in her room, but not to worry, the housekeeper had moved it so it was only at the foot of her bed. This is the bolster/body pillow the AL Admin asked us to provide to keep her from falling out of bed. It is now at the foot of her bed. Nobody will replace it. Local and Preferred are unconcerned.
S2/DiL have asked us to come to drive him to a medical procedure that happens the weeks after their baby is due. (She technically can drive, but never does; they don’t want her driving him with the baby) Same exact days I was supposed to take my mother to an appointment, literally having to choose between them. Did not wave at S2/DiL and say “this is exactly what we meant when we said she needs to drive, not just have a license”.
My friend’s mom died today after a stage 4 dx last month. Funeral Saturday. DH went back to work for the first time today, 4 weeks post-op. Door installers due Friday (our front door broke). So I am going to bed. Thanks to all of you for your good listening ears.
Would pool noodles on each side of the bed under the fitted sheet help with the bed problem? We have used that system with both young ones and older ones. If you need a place to sit on the side of the bed, there can be a gap, or the pool noodles can be cut shorter so they don’t go all the way to the end of the bed. ( and then the side of the bed at the feet can be used for sitting)
My dad is still pretty independent at 89. Still drives, but not as much and only to his regular haunts. He is a HUGE YouTube fan. Watches lots of content on train travel, tracks whenever a family member flies, listens to organ concerts, picks up new repair ideas, etc. If he falls asleep in his office chair while watching, no harm done. It keeps him connected to his interests and engages his brain. He’s developing some macular degeneration so reading is getting harder for him. I notice that he doesn’t get through many of his magazines any more. This is also why he doesn’t drive at night, either.
Dad uses a walker because of neuropathy in his feet. Resisted it for a long time, but then we encouraged him to decorate the darned thing. It now has (actual) bells and whistles, a license plate, flags and he sewed bags that attach to carry his stuff. Drags that thing everywhere and tells everyone the entire story behind it.
Popping in to say a visit with 99 year old father (and younger caregiver wife) is going ok. Home PT and OT helpers seem nice. (Shower helper keeps cancelling, sigh). Giving hugs to those who posted above with much harder situations.
Practical tips: 1) To stand from chair to walker, Dad needs to remind himself to scootch up to edge of seat…that makes it doable without assist. 2) OT gave hint for constipation that was new to me - in bed, lay on left side and “pedal” with legs 3) the car thingy that goes into door latch to give an extra grab handle is so helpful to him! 4) Facetime on ipad with “captions” is great… assuming ipad charged and user remembers that tis easy-peasy to use (unlike email, which I now discourage unless there is a local helper). 5) PT/OT team made all chairs / commode same height… that has been helpful
My longtime friend Dr. Atul Gawande joins me on the latest episode of Staying Human to unpack what it truly means to live well, to die well, and how those two concepts intimately inform each other.
Thanks for this and all your very thoughtfully shared articles @oldmom4896! This is very poignant and something we should all discuss with our providers & loved ones. As the two speakers indicated, the answer can evolve over time as to what makes life meaningful and worth living.
The video was really important. It made me a bit sad because at this stage in my grief (over 2 years), I wonder if I’d had enough of those conversations with my husband before he died. I think we did most of the time, but yet it eats at me.
I am pretty sure there is always something that eats at you when you lose a loved one.
It is important for us to remember we were doing the best we could at the time. It will not be perfect, or maybe even good, but it was the best we could do. I write this to remind myself to talke my own advice!
@DeeCee36 I am excited for your father’s literal few / many steps forward!
And then can completely relate to the metaphorical step back the next day.
I describe this whole process as either a rollercoaster or the classic two steps forward/one step back. After almost a full week of what seemed like only forward progress for us, we had our big step back. First the good, she has mostly stopped talking about dying, other than to be more philosophical about it “I guess death didn’t come for me” or more negatively “look at what happened last week to [close family member who came for a visit and died right outside hospital], did all that treatment and dropped dead in one second four years later. Did him no good.” On that one, I just reminded her that what she has was not the serious heart condition family member had and that her serious condition was 100% treatable. And four years is a long time. She seemed to hear that.
She got “promoted” to regular rehab from the hospital rehab. Got transferred, seemed rarin to go with PT and OT…and then end of first day there, she got a fever and is now ill, they worry with pneumonia. They should tell us more today, but definitely huge step back, they were talking about taking her to local hospital ER to put her back into the acute care setting. From what I can piece together, Rehab Center insurance coverage is 10-14 days max. If she is unable to do therapy because of pneumonia she is better off in a regular hospital until she can be back at therapy center.
And because having elderly parents is never easy, my dad, who had been visiting (the germy hospital) several hours every day, is now sick too and wasn’t feeling well enough to get out of bed today.
Normally, we live across the country, but have had a small vacation home near my parents for 20 years. I have put a lot of my regular life on hold taking the summer off, spending a month right now at the vacation cabin (where we normally would only spend a week or two a year), and I am not sure I can keep this up. Also, I have never been that close to my parents, I moved 2000 miles away 30+ years ago and always told people “my parents and I get along great from 2000 miles away.” Being only 30 miles away for what is now the longest time period in my post college adulthood, and seeing them daily, is really taking a toll on me. It’s been 5 weeks and feels so much longer than that. (And I had a two week break in between to go home and get kids finished up with the school year, placed in their summer program etc) On the other hand, the two weeks I was away I was constantly distracted. I am not sure there are any good answers here, other than to reflect as written above, I am doing the best I can. It may not even be good, but it’s the best I can do. And the best thing may be for me to get away again, and let the drama play out a few days without me. I worry that things take a turn for the worse, and she dies when I am gone, but I can’t be here every day for months either. They are a high drama family, and I am a no drama/low drama type. And this is constant drama.
This was good. Thanks for posting. I loved Being Mortal.
This also was so triggering for me. The story he told about the woman with dementia who was so anxious because she needed to see her parents … ugh. I’ve told the story about my mom keeping dh and I up until after 3 a.m. one night because she needed to get home from the movies because her parents would be worried about her.
I was listening on the treadmill so I just cried and kept walking. (((Hugs))) to everyone still in the throes of this.
Thanks for your honesty. I think it’s really hard to talk about your family dynamics. How you love your parents but that it’s hard at times.
Things aren’t perfect, relationships are messy. And that we need to take care of ourselves also.
Sorry to hear about the step back. Pneumonia is tough, I hope there’s some improvement soon