Eldercare from a distance
January 5, 2024 6:14 AM Subscribe
My widowed mother lives alone in the "independent living" section of a continuing care retirement community. She has limited connections to other people and has significant pain that has led her to the ER three times in the last month. She has a remote history of difficult cessation of prescription opioids. I live 700 miles away and am not sure how to manage this from here, and am hoping for some advice on how to do the eldercare thing. Assume I am sorted for legal documentation. (YANMD, YANML.)
The pain's origin is a mix of genetic predisposition, arthritis, inactivity, and likely psychogenic pain. She is not a candidate for e.g. joint replacement and she already uses mobility aids. I've noticed that some pain episodes come on following stress, and she does not tolerate even modest interruptions to her routine, which makes visiting tricky. The holidays were difficult and lonely for her this year and I think that may be playing a role in this episode -- she just keeps saying she misses my dad.
In terms of medications, when things are normal she manages with NSAIDs/acetominophen. Her history with opioids is pretty banal/typical -- she was prescribed some sort of oxy for recovery from surgery many years ago, and the tapering was very difficult and had to be managed by my father. These ER trips this month have all ended with prescription of a mild or low-dose opioid, which she says does nothing for her pain, then she uses it up anyway and heads back for more. She manages her own medications and I have some concerns about whether that is wise in this case.
When my father was end-of-life, as difficult as it was it was clear what to do: he had a terminal diagnosis, he asked for my help, I took family leave, I visited as much as the pandemic permitted, he was gone in under a year. I'm having a harder time understanding my duty here. Relocation is not on the table for a couple of reasons, so we need to make do with visits and phone calls. How do I tell when it's time to drop everything and fly out? Is an escalating pattern of possibly-drug-seeking ER visits a reason, or can that be managed with phone calls to her doctor? How do I manage this without formal leave in place, knowing that her decline is likely to be much longer than my father's?
The pain's origin is a mix of genetic predisposition, arthritis, inactivity, and likely psychogenic pain. She is not a candidate for e.g. joint replacement and she already uses mobility aids. I've noticed that some pain episodes come on following stress, and she does not tolerate even modest interruptions to her routine, which makes visiting tricky. The holidays were difficult and lonely for her this year and I think that may be playing a role in this episode -- she just keeps saying she misses my dad.
In terms of medications, when things are normal she manages with NSAIDs/acetominophen. Her history with opioids is pretty banal/typical -- she was prescribed some sort of oxy for recovery from surgery many years ago, and the tapering was very difficult and had to be managed by my father. These ER trips this month have all ended with prescription of a mild or low-dose opioid, which she says does nothing for her pain, then she uses it up anyway and heads back for more. She manages her own medications and I have some concerns about whether that is wise in this case.
When my father was end-of-life, as difficult as it was it was clear what to do: he had a terminal diagnosis, he asked for my help, I took family leave, I visited as much as the pandemic permitted, he was gone in under a year. I'm having a harder time understanding my duty here. Relocation is not on the table for a couple of reasons, so we need to make do with visits and phone calls. How do I tell when it's time to drop everything and fly out? Is an escalating pattern of possibly-drug-seeking ER visits a reason, or can that be managed with phone calls to her doctor? How do I manage this without formal leave in place, knowing that her decline is likely to be much longer than my father's?
Best answer: Depression can make pain much more acute. Encourage her to get assessed for depression and medication. Being old is depressing for a lot of people. Encourage her to get involved with activities. Most senior communities have a lot of activities, group exercise, walks, a library, people play cards, do crafts, paint, etc. When my Mom was in a similar community, it was high school all over again. Cliques, mean kids, popularity shifts. But there are many more interesting, fun, nice people to get to know. If she engages in social activities, listen and praise; when you get old, listening is a big reward (other ages, too). Loneliness is a major contributor to poor health and reliance on medication. Encourage Physical Therapy. Old bodies pretty much all need it, it's good attention and very helpful for pain.
Call her more often if you can. If calls tend to go long, develop a habit of Hi Mom, I have 5 minutes before my appointment and I just wanted to see how your day's going and after 5 minutes get off the phone. get a stack of pleasant cards, send them often. I don't see signs that assisted living is required; the staff will have some idea. Thanks for advocating for her.
posted by theora55 at 6:57 AM on January 5 [4 favorites]
Call her more often if you can. If calls tend to go long, develop a habit of Hi Mom, I have 5 minutes before my appointment and I just wanted to see how your day's going and after 5 minutes get off the phone. get a stack of pleasant cards, send them often. I don't see signs that assisted living is required; the staff will have some idea. Thanks for advocating for her.
posted by theora55 at 6:57 AM on January 5 [4 favorites]
If she has limited connections to others where she lives, now is probably the time to consider moving her to be closer to you. This problem is probably only going to get harder, not easier. If she were closer to you, you could not only see her in person for your own self, but you could go to doctor's appointments with her, take her to lunch occasionally and give her specific encouragement and support to make connections ("look, here's a flyer I saw for a movie night in your community, let's go to it!").
posted by OrangeDisk at 7:31 AM on January 5 [2 favorites]
posted by OrangeDisk at 7:31 AM on January 5 [2 favorites]
I promise I read your whole post before replying, but I obviously missed that one sentence about relocation being off the table. I apologize for that. Since that is the case, finding a way to connect with her doctors is probably the most important thing.
posted by OrangeDisk at 7:50 AM on January 5 [1 favorite]
posted by OrangeDisk at 7:50 AM on January 5 [1 favorite]
On a practical level, now is the time to find an "eldercare advisor" in her town. That person will charge you a fee and be able to advise you on all sorts of levels of care and what's available there. So for us that meant discovering that Mr. Blah's mother-in-law was already qualified for X hours of in-home care via the state, could get free rides to/from appointments, etc. Those hours of in-home care made a huge difference, with us being a 4-hour car ride away.
Later, our advisor was able to help us find the next-step living situation when she couldn't live on her own, including in her final days. We spent a few thousand dollars for the advisor, but saved tens of thousands of dollars in the long run.
posted by BlahLaLa at 8:44 AM on January 5 [4 favorites]
Later, our advisor was able to help us find the next-step living situation when she couldn't live on her own, including in her final days. We spent a few thousand dollars for the advisor, but saved tens of thousands of dollars in the long run.
posted by BlahLaLa at 8:44 AM on January 5 [4 favorites]
Like advicepig said, welcome to the no-fun club of long distance eldercare.
One in-person visit I did was focused on setting up assessments for my aunt when she said she wanted to stay in her home (she lived alone): an eldercare assessment from the local health authority and an occupational therapist home assessment. These two assessments told us what kind of help to get in place and how to modify the home to make it safe. During this visit I also booked doctor appointments, bank appointments, specialist appointments. It was good to get to know the people she was dealing with. I did spend as much time with my aunt in person as I could, but unlike your mom she liked having me stay with her despite her strict routines; it might be harder for you. I acknowledge I am also privileged in terms of having the finances and flexibility at work to fly out to visit family relatively frequently. However, I still think even if she is not keen on visits, if you can swing it to do one of these visits it would be worth it.
There’s lots of really good advice above about what to do when you can’t be there. I’ll just add a random list of what worked for us personally when I was caring for my elder from a distance:
Anyway, good luck. You are doing really important caring work. It’s not easy but personally I am grateful that I had the opportunity to do this for my aunt. I’m not saying either of us was perfect—we irritated each other sometimes! But I miss her every day now that she is gone, and I am glad I was able to have this close relationship with her and care for her while she was alive.
posted by hurdy gurdy girl at 7:04 PM on January 5 [2 favorites]
One in-person visit I did was focused on setting up assessments for my aunt when she said she wanted to stay in her home (she lived alone): an eldercare assessment from the local health authority and an occupational therapist home assessment. These two assessments told us what kind of help to get in place and how to modify the home to make it safe. During this visit I also booked doctor appointments, bank appointments, specialist appointments. It was good to get to know the people she was dealing with. I did spend as much time with my aunt in person as I could, but unlike your mom she liked having me stay with her despite her strict routines; it might be harder for you. I acknowledge I am also privileged in terms of having the finances and flexibility at work to fly out to visit family relatively frequently. However, I still think even if she is not keen on visits, if you can swing it to do one of these visits it would be worth it.
There’s lots of really good advice above about what to do when you can’t be there. I’ll just add a random list of what worked for us personally when I was caring for my elder from a distance:
- daily check-in phone calls either from me or another family member, often fairly short but enough to help her feel connected with us
- I was her official power of attorney and health representative, so I was able to speak to various people and get them to share useful info
- I was added as a trusted person on her accounts. She passed away suddenly and unexpectedly after an incident that put her in a coma, and I have been told that being joint on her accounts has saved me, the executor, a lot of difficulties
- arranged a home evaluation with elder services and an occupational therapist (separate appointments) for when I could be there, so we could see things we needed to do/change/add/remove to make home safer
- got to know her neighbours/nearby friends and getting their contact info
- tried unsuccessfully to get her involved in local seniors’ activities so she’d be less isolated—she had her friends she liked and wasn’t super keen on making new ones
- got her a fall alert pendant
- put a key lockbox on her front door so that if emergency services was called and she couldn’t come to the door they could be given the code and let themselves in, rather than breaking down her door. This ended up being used when I called for a wellness check after she didn’t answer the phone—she had already had her serious event that was about to put her in a coma, and was not able to answer the door
- signed her up for a meal delivery service and helped her set up phone ordering for it
- got her a cleaning service from a seniors’ home care agency (she was pretty critical of their cleaning but oh well—they just didn’t do things the way she used to when she could, and I think they were a bit of a reminder of what she wasn’t able to do anymore)
- got in touch with the local seniors’ centre who put me in touch with many of the above services and gave me the ideas to do things I had not thought of.
Anyway, good luck. You are doing really important caring work. It’s not easy but personally I am grateful that I had the opportunity to do this for my aunt. I’m not saying either of us was perfect—we irritated each other sometimes! But I miss her every day now that she is gone, and I am glad I was able to have this close relationship with her and care for her while she was alive.
posted by hurdy gurdy girl at 7:04 PM on January 5 [2 favorites]
Response by poster: Thanks, all, there is some really great advice here. I love this community!
We had the assisted living conversation two years ago when my dad's decline began in earnest, and these responses are a good reminder that now might be the time to revisit. The nice thing is that in a continuing care community, she has the option of going to personal care temporarily, e.g. while this pain crisis is sorted out, so that she can have 24/7 access to a nurse, and that might be an easier sell than a permanent move. I broached it today and she said she'd think about it.
The social piece is much harder. I can and do nudge toward PT for the pain and the many activities available to her at her community, but she always has Reasons not to, and there's only so much I can push. I'm trying not to write a novel here, but she makes a lot of mess for herself in a regrettably genetic way. She's never been willing to tolerate others' weaknesses, but in the last six months she's gotten especially fixated on how unfair it is that she keeps having to share a dinner table with people who have disabilities. But the fact is that she does have people to eat with (when she is strong enough to go), specifically people that remember my father fondly -- and she does have siblings in town who are willing to help her in a pinch -- and as limited as these things are, neither of them would be available if we were to move her. There's a bunch of very large financial barriers too that I won't get into, but it will surprise me if it is ever a kind or wise choice to move her, even though it would have made my life many thousands of dollars easier if she'd picked a different path.
posted by eirias at 7:32 AM on January 6 [1 favorite]
We had the assisted living conversation two years ago when my dad's decline began in earnest, and these responses are a good reminder that now might be the time to revisit. The nice thing is that in a continuing care community, she has the option of going to personal care temporarily, e.g. while this pain crisis is sorted out, so that she can have 24/7 access to a nurse, and that might be an easier sell than a permanent move. I broached it today and she said she'd think about it.
The social piece is much harder. I can and do nudge toward PT for the pain and the many activities available to her at her community, but she always has Reasons not to, and there's only so much I can push. I'm trying not to write a novel here, but she makes a lot of mess for herself in a regrettably genetic way. She's never been willing to tolerate others' weaknesses, but in the last six months she's gotten especially fixated on how unfair it is that she keeps having to share a dinner table with people who have disabilities. But the fact is that she does have people to eat with (when she is strong enough to go), specifically people that remember my father fondly -- and she does have siblings in town who are willing to help her in a pinch -- and as limited as these things are, neither of them would be available if we were to move her. There's a bunch of very large financial barriers too that I won't get into, but it will surprise me if it is ever a kind or wise choice to move her, even though it would have made my life many thousands of dollars easier if she'd picked a different path.
posted by eirias at 7:32 AM on January 6 [1 favorite]
Has she seen a pain specialist yet? They may have other suggestions, and even if they don't, they're at least more likely to make her feel heard.
FMLA can be intermittent if you need to take occasional time off.
Do any of her siblings happen to have a child or grandchild who might be paid to visit her weekly to say hello, tidy up if need be, and generally keep a closer eye on her situation? That will be both cheaper AND likely more effective than assisted living.
posted by metasarah at 1:45 PM on January 8
FMLA can be intermittent if you need to take occasional time off.
Do any of her siblings happen to have a child or grandchild who might be paid to visit her weekly to say hello, tidy up if need be, and generally keep a closer eye on her situation? That will be both cheaper AND likely more effective than assisted living.
posted by metasarah at 1:45 PM on January 8
You are not logged in, either login or create an account to post comments
Step one, get a trip booked to go see her. It doesn't have to be right away, but if you are able, get something on the books for her to look forward to and for you start planning some homework for.
Step two, start lining up some visits. Ideally, you'll want to go to her doctor with her and get a overview of how she's doing. You might also start prepping her for the idea of moving up to assisted living, line up a visit to tour that side with her. Would having someone do her laundry, clean her room, fix her meals, and manage her meds take some of this stress off of her? One thing you mentioned is how she's very much a person who does best with her routine. The transition may be rough, but assisted living days are centered around the routines of the day there. This may also help her get some social interaction that could address her loneliness.
posted by advicepig at 6:35 AM on January 5 [4 favorites]