Parents caring for the parent support thread (Part 1)

@bookreader I was going to say Alfred Dunner at JCP on-line, I got those for Mom all the time. I got sizes from 6 to 14 as her weight fell then went back up and they added the depends. And I had to keep in mind washable in hot water because the home was going to wash in hot water no matter if it was a nice wool sweater…

I am so sorry for all the traumas recently posted, it is TOUGH really really TOUGH. Just like parenting, we muddle through and do the best we can, AND please keep in mind, the best you can is all you CAN DO. Whether or not you could have hypothetically done differently or done more or less, doesn’t matter. you did your best and that really will be good enough in the end.

For @mykidsgranny … if she goes to bed at 5:30, does she get up in the night? If not, what is the harm? My brother was fussing because my dad was sleeping in (which he never got to do being a farmer) and I said what is the problem? Let SIL leave him some breakfast where he can find it and he can eat it whenever!! I am so grateful that he is still with us and still able to live with my brother. But at this point I keep telling my brother to let Dad have a cookie (Dad is diabetic) because a short life but a merry one is really OK at this point.

@surfcity, I have been following your posts about your dad and the accident. How heartbreaking. Sending hugs and prayers for you and your family.

Health care providers know that behavior they see in dementia patients is not indicative of the person they are.

May I suggest that you speak with the rehab unit that he will be discharged to and review medications. Have they thought about starting him on other meds that will temper his agitation and mood? Restraints should be a last choice and must be ordered by an MD and documented with set safety checks. It is done to keep him safe, but there may be some meds that will help to prevent their use.

Had a situation with a resident at work (skilled care) that I thought I would share. Resident showed signs of physical decline in recent week, including lower and lower blood pressure rates. Then very dramatic change within 8 hours, and then very suddenly, very rapid breathing, which we immediately addressed - we put her on oxygen and got her a Nebulizer treatment. That helped. Family wanted her to go to the hospital (she is DNR) just to make sure if anything else could be done to make her comfortable. Hospitalist talked to family in ER, and after a few hours, came back to our facility. Family stayed a few hours, her breathing was very shallow but she was clearly staying awake with her eyes open. A few hours after they left, she passed. Her son said she was one to do things ‘her way’. Some don’t want to pass when family are in the room.

I think she had gotten scared, and once the Nebulizer treatment and oxygen helped her, she calmed down.

So, in some ways, expect some of the unexpected when a loved one is checking out.

Many families don’t have the resident go on hospice. This one wasn’t on hospice care. We have had another resident on hospice care for weeks, and have the liquid Morphine in case she has pain, but she has had none.

SOS, I’ve heard many tales from nurses about a loved one psssing just as family finally takes a break. It’s something families should try not to feel guilty about.

My experience is at a hospice, where there’s a lot of social worker support to help families understand end of life.

I linked to the Alfred Dunner pants at JCP- and no judgements intended! They have convenient elastic waistbands and look great after many washings!

I am so sorry, I was joking about the Alfred Dunner! I do wear it and I like it, but the college kids I talk about here are my grandchildren, not my children. I wasn’t really upset. The Alfred Dunner pants wear like cast iron and never wrinkle, so I can go to a meeting late afternoon and still look fairly fresh.

No offense taken, whatsoever!

@esobay, yes, she gets up in the night and wanders. Which isn’t a problem, really, but I sleep at the other end of the house so if she falls she’s on the floor until I get up. Sometimes she gets up, makes her bed, gets dressed, and goes to the sofa for a while and has a snack. Then she goes back, changes back into her pajamas and goes back to bed. She just isn’t steady enough to do that wandering, otherwise I would withhold the sleeping pill and let her go down when she wanted to. Plus she does take an Ambien, so she can’t wander while she is under that influence.

@mykidsgranny I think sleepwalking is a known side effect of Ambien. It might be worth talking to her doctor.

Edited to add:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2762721/
Zolpidem is Ambien.

some hospice agencies are better than others. a few in our area just have a few morphine bottles in our narcotic drawer and pretty much have us call when resident passes. others are very good.

I just had the hospice talk with D2 (my detail gal) about this quality issue, should the time ever come.

While I dealt with some other details, she read me parts of my Medicare Advantage 2018 coverage changes and we checked the variables that matter to me now. But it was also an opp to discuss some future issues that have come up on this thread. Eg, surgery/intervention vs quality of life, AL vs living with one of my daughters, end of life.

I feel somewhat satisfied she saw some of the sorts of decisions, how to weigh, and at least where Medicare is involved, how to learn what’s what.

It was interesting how using the info booklets guided the talk.

@lookingforward Can you provide some information about how to find the info booklets to start this conversation. I know my father has his DNR in his filing cabinet, but I am afraid to have the conversation.

Thanks for letting me vent. I finally got dad moved at 6:30 pm last night, to the rehab floor of his personal care community. The hospital signed off on his discharge at 11:30 am but had to wait around for insurance to approve the transfer.

I begged and pleaded (and at one point burst into tears accidentally!) with the case manager and nurse, telling them that if he goes to an unfamiliar environment at dinner time or later, being a T1 diabetic and brain injured, he will start having terrible sundowning and it will turn into a terrible situation. If he could be moved a noon, he would have time to adapt in the daylight and be okay. The case manager said, “but he was fine last night, he didn’t need his one to one aide” and I explained that he had had a day to adapt. I asked what they would do at rehab is he started to get violent or paranoid and she said they’d call the police or EMS to bring him back to the hospital.

Meanwhile - it would be SO EASY to prevent this and to do what is best for the patient. I offered to take him myself but they would only allow a medical transport (which I totally understand of course)

I was so frustrated that the insurance company gets to determine what happens, snd not what is best for the patient. So I sat with dad for 6 hours to keep him calm and then sat with him some more at the rehab and did everything I could to ward off any paranoia. I did not get a phone call in the middle of the night so I am hoping things went well.

He is my dad and I will do everything I can to make him safe and feel okay, but I feel very taken advantage of by the system. I have a somewhat flexible job and I am not at risk of being fired for not showing up, it just seems wrong that I have to suddenly devote 40 hours a week to managing my dad because the system won’t listen to his doctors and experienced nurses and do what is best for him.

Whew - anyway sorry to hijack here. What is even more difficult for me is to know that SO MANY others are dealing with similar or worse situations. It scares me for my future, I don’t want my kids going thru any of this :frowning:

@surfcity - Sorry for the challenges and doesn’t seem a hi-jack of the thread. This type of systems issue, especially with transitions for frail, confused elders compounds an already difficult situation. I have been in this situation myself, on a Friday night, with MiL not having her rehab make discharge arrangements to be sure there was necessary anticoagulant injections on hand at her (connected to the rehab assisted living facility). Really? After that, I was more apt to anticipate all situations with the discharge coordinator. That said, sometimes it literally is what it is and this stuff can’t be finessed. All you can do is try.

Agree with you about the kids. Systems seem to get more complicated and less personal, even as patients are at their most vulnerable. Anyone could need an advocate at some point. I am grateful to be able to do it for myself as long as possible. When caring for my elders, I tried to share the decision trees and thought processes with my adult kids, little by little. I think it will help them when the time comes. I am also extremely blunt on the quality vs. quantity issue. Greatest gift my parents ever gave me.

@BerneseMtnMom - many states now have very specific forms that delineate end of life care preferences. The forms can be updated as circumstances change and include decisions around transport to hospital or not, IV fluids, feeding tubes, treatment of illnesses, etc. Reviewing the form with my father’s dr. was extremely helpful, grounding his caregivers and me. If your father is competent to make complex medical decisions and his Dr is willing, the 3 of you reviewing the forms together could be useful. If he can no longer make these more nuanced assessments, his health care proxy can review with the Dr. It, along with observations about his daily quality of life, gave me a good sense of “what time it was”. Also, his Dr may be willing to preview the issues with you in advance, which may help with walking your father through the process. All the best.

A mostly venting development in MomLand:

I’m visiting DS2 and his girlfriend in the Midwest and have been talking to my 87 y.o. mother back home in New England daily. Yesterday morning she sounded a little down, so I asked what was going on. She was outside, took a fall, and broke her wrist in two places. A friend took her to urgent care, they said she needed to see ortho, and she got an appointment. No surgery needed, thank goodness, has a cast, has follow-up appointment late next week.

Of course everything comes with baggage, ahem, history. I’m an only child, and my mother has had a healthy inclination towards learned helplessness in the past. I’m trying very hard to not use that lens when looking at new situations as they arise.

As for many of you in crises large and small, it’s a logistical tangle right now. I drove out here with the dog so am two days away. Closer DS1 doesn’t drive plus will be out of state this weekend. But DH is in Northern Virginia and offered to fly up. He is more than willing to help her out if she needs someone around, but he just told me his main motivation was based on his knowledge that she’d be reluctant to ask him to do that and therefore likelier to be more careful about asking me to cut short my trip, with the advantage of knowing that he’s a relatively quick trip away should family be necessary in short order. So he’s my hero, both for being willing to help her and for stepping in on my behalf.

Also a very silver lining is that she (and my father when he was alive) would call me for everything rather than finding other resources or possibilities. If around, I’d of course have been there and helped, stayed over or brought her to our house, etc. In situations like this my mother invariably says “I don’t know what I’d do without you!” Now, however, she’s had bystanders help pick her up, a neighbor taking her to and from the medical offices, healthcare staff taking care of her – and one of the last things she said on the phone to me a little while ago is “People are so nice and helpful!”

So she sounds all right for now. Has food and meds, doesn’t need to get anywhere, and feels safe in an apartment building where the residents look after each other. She told me not to cut short my trip and sounds like she’s staying comfortable.

I get home Tuesday evening, and we’ll talk twice a day between now and then. She sounds frustrated and still in a little pain but lucid and grateful, says she’s in good shape as things stand until I’m back. This sounds all right to me, but I also realize I want to have my entire planned visit with the kids here. Am I missing anything else to watch out for?

Bernese, in our case, it was the BCBS 2018 info on my current MAdvtg plan (“Annual Notice of Changes,”) and the booklet from CMS, “Medicare & You 2018.” It wasn’t some separate sort of guidance for talks. In going over, eg, hospital copay for days 1-5, we talked about hospitalization and SNF. In this case, it wasn’t about informing me of an elder’s wishes, but giving my kid an idea of how I view key points.

This D is usually very emotional about me. But doing it as a review of my Medicare decisions right now, it felt more rational to her.

Isn’t it always the way, @HouseChatte? Sometimes the only time alternative supports are sought is when they have to be. I think it is a good thing to build on, as at 87, your mother may well eventually need more help than makes sense for you to provide. It is good to normalize seeking support for such things and I have suggested to friends to bring in an aide for light duty, once the decline starts, just to get their elders acclimated to the concept. Is this her first fall? Anyone can have an accident, yet it is good to know the context when an elder falls. Was she distracted, dizzy, etc?

If you hear concerns about eating, pain, sleeplessness or more general unsteadiness, I’d follow up. Maybe be sure a neighbor eyeballs her daily. It could also be good to have her helpful neighbors and a quality home care agency in your contacts going forward. That way, you will have a starting point in a crisis. Quality elder facilities usually know who the best home care agencies are. I had a list of drivers available for my father when he was in AL, even though I always took him to appointments. I wanted to know what I would do if he needed outside care while I was away.

Also, my mother swore a her directives and other important documents were in her desk drawer. Not. I had a copy of the POAs, but that’s all. I did know she always informed her docs of DNR and that I was primary contact, but not proofs in hand or the rest. Eg, no list of credit cards, active bank accounts, investments.

Since she hoarded, many large moving boxes of papers (and other ridiculous junk,) I did find her complete retirement info, easily 20 cards, and etc. But what a pain to both find these, sort, then contact different parties.

That, and experiences on this thread, shout, don’t trust “in the file cab.” In a crisis, say, a fast move to AL or SNF, you want your copies.

@BerneseMtnMom I am doing a research study on this (allowing for more conversations in primary care) for my doctorate. The best materials I have seen are here: https://theconversationproject.org/starter-kits/. If you prefer a web site, there are several and I can get those to you if wanted. My project is also about filing wishes in the medical chart for better access, a big problem in medical care. My hope is that in addition to whatever the “filing” system is being used, they will also be available from the primary care provider…

if you use local facilities that have a social worker, and our local hospital has the documents/forms readily available for DNR etc - can also consult a local attorney - and we have a seniors type attorney here in place that gears her whole practice to having all one’s documents in place - I would need to look up what special certification she has, but it has to do with knowing how to do all of this ‘right’.

Once patients and families understand what a ‘full code’ means, they then understand a gentler approach to medical type decisions.

Started cleaning out mom’s house today – what a chore! She was a bit of a hoarder… We’re bringing her up to the house tomorrow, hoping it goes well. She’s been in the nursing home for over three months now and doesn’t seem to have missed any of her stuff, but seeing it all again might trigger some emotions. The 30-yard rolloff dumpster parked in her driveway really brings the point home. We have to have the house totally cleaned out before her reverse mortgage company will even consider accepting a deed in lieu of foreclosure (she’s “underwater” so we’ld rather just give it to them instead of having to try to sell the house ourselves or having them have go through foreclosure).

Several helpful resources for end-of-life planning are summarized and linked here: https://www.americanbar.org/content/dam/aba/administrative/law_aging/Health_Decisions_Resources.authcheckdam.pdf