Situational/Sporadic Disability (rant); how do I balance his need for autonomy with the need for care?
More a rant than a question, I guess.
We're both 62, and retired due to DH's "mild" 2011 stroke.
DH has longstanding post-stroke cognitive deficits and issues with stamina, all of which have recently been exacerbated by ESRD.
His abilities and stamina have fluctuated wildly since 2011 - but usually it was a good day/bad day sort of thing, with maybe pauses to take breathers. Now? Things come and go in an hour's time, or less. And the effects are more severe.
I feel like I can't leave him alone for a full hour. But ... when he's good, he doesn't need a "sitter." He's sharper, and more fit, than I am! Until he isn't. Utterly unpredictable.
He NEEDS and DESERVES more autonomy, but ... I struggle to find ANY way to balance his needs for autonomy with the need for care.
I posted a very similar question on a stroke forum last year as OT recommended supervision outside the home but my relative was still catching a taxi on own. I was struggling with this - guilt, worry.
This is the reply I received from the Professional councellor:
"Thank you for your enquiry. We are sorry to hear about your relative’s stroke. It can be challenging to balance safety and independence in these situations, and stressful for carers who may see the risk differently to the stroke survivor.
If your relative is aware of the OT recommendations and continues to choose to do this independently (and capable of making this decision) we would suggest a few things, some of which you may have already put in place or considered.
Minimise the risks you have control over. This might include your relative informing you of when they go out alone, calling before and after, carrying a mobile phone, etc. A personal alarm is a good option around the home but most of the models on the market won’t work far beyond the home.
See if you relative would accept more social support. For example, someone to take her out in the taxi for outings.
Talk to your relative about having this as one of the rehab goals to keep working on in therapy. Can the OT and physio keep practising getting in and out of car, walking, general strength and conditioning exercises and review falls risk (footwear, etc)?
Seek support yourself. This might be calling us for a chat, a psychologist, or friends and family".
The takeaways for me were *minimise the risks I had control over*, *more social support for relative* & *seek support for myself*. Sorry I can't help more ((hugs))
We will handle this “new life” one day at a time. I am going from doing everything for him but feeding him to being his cheerleader and encouraging him to maintain his newfound independence. One day at a time. We will handle whatever each day brings. I will encourage his “autonomy” but also be there for him to help and encourage.
Our situation is almost the reverse of yours. My husband started slumping in June. He's always tended to react physically to emotional stress, and his parents were undergoing lots of transitions at the time, including a move to Independent Living. So ... I chalked up his decline to emotion. It turned out to be almost purely physical.
Nevertheless ... just in case, I did urge him to get checked out physically, just in case. He refused to do so. And now ... here we are.
Say you were assessing him on a typical bad day, looking at his Activities of Daily Living and his preferred routine.
I'm think that ideally the person supporting him shouldn't be you, but should be someone he is happy to have hovering in the background. Would that be financially practical if it could be arranged for a certain number of hours or days a week?
What he can't do is drive, handle finances, deal independently with doctor's appointments or other household business transactions. He can't plan in steps if they're not already routine. When he gets tired, brain and body nearly collapse - and that's why I hover. At those times I need to assess him, get him to rest, then take over whatever he was trying to do.
DH just started on in-home peritoneal dialysis (PD) last week. He doesn't have it together enough to perform the procedure, so I'm doing his exchanges, 4x per day. That's non-negotiable. There is no PD respite available. In-center dialysis would not work well for him.
In several weeks, we may start machine (cycler) PD. That would run all night, which would free up our days to some extent. He may (or may not) regain some clarity and stamina over time.
Eventually, we might be able to get some help from the Veterans Administration, but I understand their backlog is enormous.
Dialysis is working great! So great, in fact, that my husband's BP - which, heretofore, had *never* gone below 160 systolic - dropped to 79 systolic this afternoon.
Blessedly, we were, at the time, at his primary care doc for a routine followup. From there, ambulance to ER. He's home now. We missed 2 dialysis exchanges today, but the ER doc said his labs were OK, so we shouldn't try to catch up.
He's been taken off his BP meds completely, except for Hydralazine - and that's strictly on an as-needed basis. He also gets to drink more fluids.
*IF* we can get his BP stabilized, and keep it stable, the need for my hovering *may* (but only *may*) be reduced. BP is the most likely culprit behind his rapid fluctuations in stamina and cognition.
He feels much better now. Cognition still sucks, but we're giving it time.
Be patient with your expectations of improvement in that it often takes months after the start of any renal replacement therapy for those toxins to clear and be excreted. I worked as a dialysis RN (trained home PD pts too)& often families and patients think that once they have a few dialysis sessions they should be cured. While never cured, it is important to give the patient time to get good dialysis treatments as that’s most important.
I am curious - what is his weight?
If he can do the PD cycler that is the way to go.
Best of luck to you! Happy that PD is working for both of you.
The fluctuations, however, can occur several times within the span of an hour. Selfishly speaking, I find the unpredictability is the hardest thing to deal with. In his brighter moments, he feels some of the strain, as well.
His weight's about 236. Low, for him. We expect to go on to the cycler in a month or two.
People with ESRD who are on dialysis are generally given strict dietary guidelines like low-salt, low protein and sometimes limited fluids. No fast food lunches! Following these will improve his health.
We do need to get an ID bracelet, though. Thanks for the reminder!
The paperwork is long and tedious, and as you say the backlog is probably bad (and not likely to get better), so I would highly recommend you at least get the paperwork started!
If you have a local Veteran's, they might be able to assist. There are also places that will assist you (not sure how they get paid, but it was a free service, even though they were not part of the VA.) I started with their help, unfortunately there were a few things I had to deal with myself and when I finally submitted it (it was for mom, based on dad's service) it was rejected because the forms the other place sent to me were "expired" - there were new forms online which I downloaded from the VA (the person denied doing this, but I had the email to prove it!)
In our case, I finally just dropped it. I had too much on my plate to deal with already, and because of the time lapse and changes in pension, SS, etc, I would have to start from scratch. The rules changed some too, so I believe they, like Medicaid, will now do some kind of looking and given mom has a trust fund we set up, she'd likely be denied. I decided it wasn't worth my time only to get rejected! For now, between pension, SS and trust (includes the proceeds from the sale of her condo), we are okay for a long time. If the need ever arises, I can always apply later.
We have a County VA help center. They told me to begin with a VA medical appointment. I'm looking for occasional help, not funding or housing. If the red tape looks too ridiculous, then I plan to forget about it.
I'll give it at least a few days, then maaayyybeee take a day-break to do something non-medical, or grocery, or household emergency related.
We're not at each others' throats, but I'm certain he could use a break, too.