Every situation is different, but when multiple care givers/family members are in and out, I know families that kept a notebook where the important stuff could be noted. I’m betting your sibs leave exhausted; maybe the professionals would add important info. It’s like playing telephone to keep accuracy at the forefront. Best to all of you.
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So this won’t work in most familes. But we like to keep various things (like trip itineraries, grandparent healthcare notes) in shared Google docs.
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What you’re describing is the kind of situation that has convinced me that older people need an attentive advocate. There are so many gaps in the system and the healthcare providers let a surprising amount of information slip. There’s not as much coordination or information as one would like to think. And it’s true even at the top end of the system. My dad is getting care at the sainted Mayo Clinic (he was on the staff in his working years and I grew up in that town) and the gaps and lacunae are pretty shocking. You have to watch and check everything.
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Yes, that’s what we decided. My dad’s advocate was so good. I really think she is the reason he’s alive and thriving today. $120/hour was money well spent.
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Many orgs have patient advocates on staff but they are really extensions of HR and are not there for the patient but to cover the institution’s behind. If a family member isn’t able to really dig in, I think a paid advocate (not affiliated with the institution) is a very good idea.
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For sure, I wouldn’t use one affiliated with an institution.
Caring for elders is truly exhausting. It takes a village. We used a combo of these things with my folks. We had a plain composition notebook on the table where the medications were kept in the folks place. The table also had all medical devices—pulse oximeter, blood pressure monitor, nebulizer, etc.
We also had a family chat thread where all siblings and whichever of their spouses were on. We would share important info on that thread. I opened an electronic medical record account for each of my parents and shared the info with my sibs so anyone could look at the info on it.
We have 9 family members who are doctors of varying specialities and all took varying degrees of interest at different times. I had the most flexible schedule so did most of the transporting of my folks to the md and/or was on telehealth calls. Others (especially md sibs/in-laws) also tried to participate when available.
We would also periodically hold in person or zoom meetings as needed. It was challenging but worked fairly well because we were able to share the load and keep my parents out of the hospital as much as possible.
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If I were there in town, I would be the best choice but I am not. Mom has 4 different doctors at this point and none are remotely interested in coordinating care. There is barely an ER, let alone patient advocates. I will spare you all the stories.
We are circling back to the eternal question of does she stay in the house alone, or not? and as the not-there person, my opinion is going to be heard as criticism so I just try to be cautious. I have , by far, the most experience navigating healthcare but LS is an avoider and PS is all toxic positivity. We’ll just stumble along.
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It is a difficult thing to be the best choice for caregiver but to be far away. H is definitely the better choice for his mom, but 1) she believes it’s the daughter’s responsibility, and 2) she lives too far away to make the trip to come live near us (she can’t be in a car for even an hour). So we are grateful that his sister is doing the work, and we very often bite our tongues because she is doing her best.
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The patient advocates we’re talking about are private, not hospital employees. Ours was an RN with 25 years experience.
My dad fell while on fall watch. He lost some of his teeth! We talked to the hospital’s “patient advocate” and said we expected them to pay for the cost of Dad’s dental work. They refused. So we sent in Dad’s advocate and somehow she made them see reason. They paid for everything.
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We had a daily email. As a daughter, of course, most of the emails were from me!
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Oh yeah, I made checklists of all the tasks I wanted Aides to do each day with mom. They were pretty good about completing and checking the tasks.
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I have an interesting issue, so looking for thoughts/advice. A bit of background: Mom is 93, recently moved to an independent living facility mainly for cost; she was in a large 2 bedroom apartment that she and dad had moved to 10 years ago. She is totally with it, still drives very short distances, and can care for herself.
Last week I took her to a doctor’s appointment; later that evening, she called and said she could not find her wedding band which she wears daily. Seems the ring is too big for her, and she plays with it, twirling it on her finger. She had already looked everywhere in the apartment for it, and went down to the dining room to see if it might have fallen off at dinner. She also asked at the front desk. She checked the purse she was using, as well as her raincoat pocket, thinking it might have fallen off when using either; she also went through all trashcans. I told her I would come over the next day and look under her bed and night table in the event she knocked it off her jewelry holder on the night table. She swore she put it on that morning. The ring was never found anywhere.
This morning mom calls; she mentioned to me that last night she couldn’t sleep so she got up to straighten the temporary table she has in her bedroom because it was a mess. Under the table, she had some of the freebie makeup cases you get with samples when buying makeup. She had gotten rid of many when she moved, but this was one she thought she might use, so kept under the table with a bunch of other junk we haven’t gotten rid of yet. She opens this case, and there is her ring. Mom doesn’t know how it got there, as she said she never has opened or used that bag. No clue how long it has been there; did she really put her ring on the morning she thought she lost it?
My concern is not that she found the ring, but she has no recollection of putting it there, and truly believes she has never gone into that bag and put the ring on that morning with her other jewelry. We all can get distracted when doing a task; I understand that. But, how does she not remember putting the ring in the case? Has it been there for weeks, and she move the case there recently? But if she is sure she wears the ring daily, why would she put it there without other jewelry? I can see if putting it away because the building cleaning or repair person was going to enter her apartment, but why only the ring that she wears daily when going out?
I know she is forgetting a few things, who doesn’t; nothing big, but she will ask what time an appointment is when I told her the day before. Again, not a big thing. Is this something I need to keep an eye out for; are there specific things I should look for? Or, is this a fluke never to be understood? As far as jewelry, I told her it all needs to be kept in the same place all the time. Most of her jewelry is with me, so if she is going out where she wants something nicer, I will bring her what she needs. She only has her everyday pieces and a couple of others.
There has been stories of thief in the building, which I believe is typical of retirement communities. I know she wants her valuables hidden when the cleaning lady is there, and I understand; just don’t understand the under the tv, especially when she is sure she put it on that morning, which she obviously didn’t. My thought is she might have put it there on a day the cleaning lady was due to come, and because she was staying in the apartment, she wasn’t wearing the ring, so put it in that case. Then a later date moved the case to under the tv table, and really hasn’t had the ring on for days. Otherwise, I am at a lose, and hoping she isn’t losing it some.
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I would write down this and anything else odd that happens. You can keep track better if it’s written down, with dates and details. It may be something weird that is a one-off, but it could be part of a pattern that emerges. Another thing I might consider is whether anyone at all had access to her room that day … if it fell off your mom’s finger, they may have picked it up and stashed it to take later. That may be far fetched, but it’s worth tucking away in your memory bank in case other things disappear.
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I’m curious how recently it was that she moved in. She may have been able to hide her decline in the apartment and now is unable to do so in the less-familiar surroundings.
My first generous thought is that maybe someone coming in to her apartment found it on the ground and put it there for safe-keeping.
My most realistic theory is that she forgot that she put it there.
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I agree, just start a notebook to date and note the incident, and any others. Realistically, its most likely she put it there and can’t remember. Sometimes once the need to be 100% because you are on your own downshifts to something less, the forgetfulness surfaces. I’d be more worried if she lost it and didn’t notice at all, or didn’t remember she ever had one.
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I would chalk that particular thing up to a fluke. I can give an example. My sister was looking for her $20 bill that she had folded, had taken out of her pocket but didn’t know where it went. I looked under the kitchen sink in the trash can, and sitting right on top was the folded $20 bill. I think absentmindedly she was putting ‘paper’ - maybe automatic like having a tissue and putting it into the trash but instead it was the money. Not even a senior moment thing - this was a teenage girl.
Hmm. Not a bad idea to keep a notebook but my guess is that she put it there with a thought to remind herself to take it out. Several times in the past decade I have stashed a small object somewhere with the thought of retrieving it later and then totally forgot putting it there or where it was. Of course I am almost 76 but as far as I know, I show no signs of dementia.
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Before a trip, I would put something somewhere and then forget where I put it - and especially putting it where I should remember where it was.
I think she is fine - just got rattled with something of great sentimental value.
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The main reason for the concern is this is a ring she wear daily, it was in a place not easy for her to reach, and once she found it, has no recollection of putting it there. Had it been in her dresser under some clothing, or in with her other “hidden” jewelry, I would understand, but this was under a folding table that she would have to get her stool to sit on and then reach for it. And, she was sure she put it on that morning of the appointment.
I will keep a notebook, which is a great idea. Of course at 93, there are going to be normal aging issues; hopefully this is just one of those. I still would have felt better if once she found it, she went, “Oh, yeah; I put it there when the maintenance guy was coming to change the filter.” No one should have been in her apartment, and the cleaning lady was told no service this week. I would hate to think she came in, found the ring, hide it, only to return at a later date to take it. Because I don’t know when mom actually had the ring, there will be no way to know how long it has been in that case.
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