update

Personal Finances Taking Care of Parents
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The hubster’s frequent messy poos are over. It was like a delayed reaction to a daily Colace+prune juice+Raisin Bran or shredded wheat+lots of fruit and yogurt.

Now just giving him pulpy oj, variety of cereals and veggies, a bit less fruit, still yogurt. And now…no poos for 2 days.

Krystal, one of our aides, says this is how it often goes in nursing homes/memory care/late-stage home care…see-saw between constipation–>treatment–>messy poos. I already gave him pulpy oj for breakfast, but might give prune juice with lunch. If no poo all morning, I think huevos rancheros for lunch. I have chicken breast for dinner…planning chicken piccata and steamed green beans.

Jourdan, our newest aide, has a change in nursing school schedule: all day Saturday clinical from 6:30am-6:30pm. So she’s not coming at all on Saturdays. But no clinical on Sundays, so she;'s coming morning–long enough to get him up, changed, breakfasted, teeth brushed, showered, dressed, and sitting in his den recliner–and late afternoon for putting to bed, washing up, putting on night diaper with extra pad, feeding dinner, brushing teeth.

Aide Shaina graduates nursing school in December and Jourdan in February (eek!). Maybe by then Krystal can pick up more hours…maybe by then bed baths instead of showers…

He didn’t want to get out of bed this morning (I’m on my own–Jourdan coming Sunday mornings starts next weekend with her schedule change). I sort of changed him (diaper off but couldn’t;t pull fresh Depends all the way up without his cooperation. He had breakfast in bed. I wonder of this is something new?

As to Mom, she’s hanging in there–likes summer as more visitors come to me then and also to her. As to bro, he’s doing well walking in physical therapy and his aide is helping him keep his business afloat, although he only has one client left.

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Since he didn’t want to get up (and I’m not strong enough to wrangle him into the wheelchair while he’s holding onto the far-side railing to stay in the bed!), I turned on the tv. By the end of the opening theme to Netflix’s Virgin River, he was asleep.

Is he bedridden now? We’ll see. If so, I need to improve my changing-him-in-bed-without-his-cooperation skills. Jourdan has no trouble, but she puts on his night diaper (not to mention that she’s 26 and muscular!). And if bedridden, it’ll be night diapers 24/7.

In some ways he’ll be easier for me to handle in bed all the time. I won’t have to worry about falls either (he fell yesterday and tore the skin on his elbow). hmmm…I should have Jourdan check him all over for hidden injuries. His face looks good, though, he ate breakfast enthusiastically. He’s still eating pretty well in general. Less than your typical 73-yr-old (less than me-), but more than my 96-yr-old bedridden mother.

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If he’s bed ridden, that may be justification for hospice?

Seems like his decline is exponential at this point. I guess that makes sense. When I shattered my calcaneous, the leg atrophied very fast, and it took a while to build back up. Still isn’t where it was. I’d probably have to bicycle several miles every day to get it where it was. So as he becomes less active, he’s less able to be active. A feedback loop.

And just when you finally get enough helpers…

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So glad to hear from you! It’s good to hear what’s going on, what isn’t, and how you’re managing.

In terms of Shaina and Jourdan approaching their graduation from nursing school, I wonder if either of them knows students who will be in the program longer who would be interested in working as a part-time aide. Or if there is some site for students to post their availability and employers to post their need.

=sheila

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So as he becomes less active, he’s less able to be active. A feedback loop.

The downward spiral. And the older the individual, the more rapid the descent.

=sheila

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My mother died at 91 back in the 1990s. She had advanced dementia, and shortly after she finally became bedridden she stopped swallowing food or water. Her hospice nurse said we could give her intravenous fluids, but we declined. What would be the point. They catheterised her, and after one or two small bowel movements, she no longer needed a diaper. The urine she produced gradually diminished and she no longer responded to sound or touch, and she died ten days later.

Alstro, your hubster is younger and stronger than my mother was, so he may survive longer than she did, but his decline will be more or less similar. Know that it will be peaceful and painless, and that you should probably have some days to accept its inevitability. We’ll all be thinking of you. Please keep posting.

Trini

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Is that actually legal? I suppose it is where you are, but denying nutrition and hydration I thought was illegal in most places. I was under the belief -mistakenly?- that you could deny artificial life support, but not nutrition or hydration.

Just a nitpicky point, but SC law may not permit that.

Otherwise, you’re probably correct. Once he’s bedridden, as sheila said, it’s a spiral down. Hopefully it will be as you say, peaceful. Perhaps a mercy at the end of this merciless process they have had to endure. That’s all any of us can ask, right?

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That’s one good reason for having a living will: to state how your health care should proceed when you are unable to voice your wishes. All the members of my family have prepared living wills, and each of us has stated that they do not wish to be kept alive by artificial means when there is no hope of recovery.

When a person is clearly dying and has deteriorated to the point of being comatose, what is the point of tubal feeding or artificial hydration?

Trini

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Is that actually legal? I suppose it is where you are, but denying nutrition and hydration I thought was illegal in most places.

Once a person is unable to swallow even the thinnest ground up foods, the decision has to be made as to whether to have a feeding tube inserted or let nature take its course. When my dad was in the dementia unit of a nursing home, and hand-feeding him soupy foods was becoming increasingly difficult, the medical people running the unit talked with my brother and me about what we wanted to do once feeding him by mouth became impossible. For us it was no question—absolutely no feeding tube. So when he couldn’t swallow at all and pushed away his food, he went onto hospice care. He remained in bed. His medicatios were stopped. And he was given water to drink. He quickly refused the water as well. He was given very low-dose codeine to keep him comfortable. The medical staff predicted that he had 48 hours max, but he actually lasted for 5 days. He seemed to be comfortable. My brother and I had stayed in his room with him during that entire time. Luckily he had had a roommate who had passed away so there was another bed and a spacious chair. My brother and I alternated for sleeping. The afternoon of the day he died, an incredible and massive rainbow suddenly appeared, going from one end of the sky to the other. And it stayed—and stayed—and stayed. Late that evening, he suddenly sat up and began breathing in a very strange way. We each sat next to him and held him in our arms…and that is how he passed. In our arms with our words of ove in his ears.

Boy…still moves me to tears. And it’s almost 17 years.

=sheila

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In some ways he’ll be easier for me to handle in bed all the time. I won’t have to worry about falls either (he fell yesterday and tore the skin on his elbow). hmmm…I should have Jourdan check him all over for hidden injuries. His face looks good, though, he ate breakfast enthusiastically. He’s still eating pretty well in general. Less than your typical 73-yr-old (less than me-), but more than my 96-yr-old bedridden mother.

You should be able to get hospice. MIL was able to get a lot of hospice help for FIL when he was bed ridden. But hospice is not 24/7. Good luck finding a temporary place to give 24-hr care. Be prepared to just hire 24 hr nursing care.

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=sheila ~

The afternoon of the day he died, an incredible and massive rainbow suddenly appeared, going from one end of the sky to the other. And it stayed—and stayed—and stayed. Late that evening, he suddenly sat up and began breathing in a very strange way. We each sat next to him and held him in our arms…and that is how he passed. In our arms with our words of love in his ears.

Boy…still moves me to tears. And it’s almost 17 years.

I am so happy for the peaceful way your dad died. Seeing the rainbow stay for so long must have been such a lovely feeling.

Both my dad and my husband had instances where they rallied at the end. My dad had been bedridden for about 4 days and, in the late afternoon, he suddenly sat up and stretched out his arms as though he saw someone and was greeting them. He looked peaceful and not afraid at all. He died shortly after 6:40pm that night.

My husband went downhill quickly. Five days before he died he was watching a ballgame on TV and was cheering his team on. The following day he lost all ability to stand or help me move him into a wheelchair or use the bathroom. His PCP ordered home hospice for him and the whole team came over very quickly. They made him comfortable in our bed and he had a sponge bath which I am hoping made him feel better. He spent the next couple of days mostly sleeping but when he would rally he wanted to talk about things he regretted. The day before he died was the last time he spoke to me and a hospital bed arrived that we put in the living room. That night he had been asleep and suddenly woke up as if he was startled. He sat up in bed and stretched out his arms and said, “Glory Hallelujah!” and had a surprised look on his face. I would say that lasted about 60 seconds and then he laid back down. The next day he died shortly before 9pm. It was a good death and I am grateful for that.

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Both my dad and my husband …

You take my breath away!

=sheila

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The hubster is on hospice at home.

They provide the following items and service (all free): hospital bed, Depends & pad inserts, wipes, gloves, his medications (I still have to get them at the pharmacy but no copays), a weekly nurse visit to chat and check vitals, and a biweekly chaplain visit to chat (he’s compassionate and has lots of experience w/dementia families). If I had no help at all, they’d provide an aide twice a week for one hour to bathe him. Yup, that’s it.

He has ups & downs. He isn’t bedridden yet after all. In fact, some days he still wanders a bit, but only within the den, but he’s a bit shaky on his feet and quite bent over. He’s eating a bit better, still doesn’t drink enough. He sleeps all night now–yay! Usually ~7pm-7am. I, however, still have trouble sleeping. Sometimes I abandon the bed in the night and move to my recliner in the den, which I find more comfortable. He’s napping less the l=past few days, a trade-off with sleeping better at night, I suppose.

My aide help is as follows:

M-F ~8:15am-1pm, ~4:30-5:30pm
alternate Saturdays ~9am-2pm, and for 10 minutes at 7:30pm
Sundays 8:30-9:30am and 5-6pm

I have no need of 24/7 help as he sleeps for at least 12 hours and cantle get out of bed without help.

Since he usually wakes before the aide arrives, I just give him breakfast in bed most mornings. Sometimes I have to get him up, too–he can’t always wait till they get here. It’s more important to have someone put him to bed, which is more difficult.

Since he can’t or won’t take pills any more, I grind his morning pills and stir into his juice. I sprinkle his lunchtime capsules and grind one pill into his “dessert” (applesauce, yogurt, fruit salad-) I shove his dinnertime pills into an ice cream sandwich or grind and stir into dessert (eg, tonight we had peach cobbler & cream so I ground his pills).

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Just a heads-up. Maybe you’ve thought of this. Some medications say “do not crush” on the label. Make certain none of his say that. I don’t know the consequences, but if they put it on the label, there is likely a very good (medical!) reason. In which case, you shouldn’t be grinding them.

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True. All of his pills, except the Depakote, are crushable (some harder to crush than others-). I switched from pills to capsules for Depakote and open them up and sprinkle the contents onto lunch dessert–or pbj.

It’s 4am. I woke up about 1am from a nightmare and have been reading a novel (kindle unlimited). This is what I mean by sleeping poorly. I’m more awake than I usually feel at 7am when I typically get up. I’m beginning to feel tempted by sleeping medication for myself. I note that my only coffee was at 7:30am, and I took melatonin around 9pm. I’ve never noticed it does any good. Wish edibles were legal here…

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I’m beginning to feel tempted by sleeping medication for myself. I note that my only coffee was at 7:30am,

Coffee doesn’t play a role in sleep issues for everyone. Depends if you’re a fast or slow metabolizer of caffeine. For fast metabolizers—like me—the caffeine is rapidly metabolized and eliminated. For slow caffeine metabolizers, the caffeine hangs around in the system and can cause sleep issues, make people feel jittery, etc.

Instead of sleep meds, I’d suggest trying something I’ve just begun with my husband. So far, great result. It’s the herb echinacea, which was originally known for its antiviral benefits. But research has discovered that a low dose is very very helpful in reducing anxiety, stress, restless sleep. EuroMedica makes a very good product, called AnxioCalm. I’ve had a bunch of samples stuck away in the medicine cabinet, and I’d forgotten about them. Came across them yesterday and realized it might help my husband’s sleep anxieties, wakings, miseries. So he took 2 in the late evening yesterday, and had the best night’s sleep he’s had in ages. Normally—ever since his leg salvage surgery in Sept 2015—he wakes at night after a few hours and can’t fall back asleep unless he comes into the livingroom, puts on his work clothes, and lies down on the couch. That’s for work days. On weekends he manages to return to sleep in bed. So last night was pretty remarkable. I’d definitely try it.

=sheila

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Wish edibles were legal here…

Have you heard of Delta-8 THC? It’s quite likely legal in your state (I’m in NC and it is here.) The weed industry figured out a workaround to derive psychoactive THC from the hemp plant which was fairly widely nationally protected by the 2018 Farm Bill. It’s a compound with a slightly different chemical structure to traditional THC (which is sometimes known as Delta-9) but has many of the same properties. Some people even prefer it to traditional cannabis because they find it to have a lighter “high” while still having a lot of the calming, antianxiety effects.

It can be found in local smoke shops around here and even some gas stations. As you would expect, there are huge variations in quality and strength and reputable sourcing but a good shop (or online reviews) can lead you to high quality products with lab certifications. You can’t buy it in flower or bud form to smoke unless you get a hemp leaf product that has been sprayed with Delta-8 oil but tinctures, edibles, and oils for vaping are widely available. (In fact, the same work-around that produces Delta-8 can be used to derive Delta-9, aka the active ingredient in real weed, from hemp. Even states that ban cannabis for recreation effectively have “legal weed” now, though some states are fighting to ban these also.)

Anyway, there’s much more info online if you google it…

sjfans

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I’ve read differing opinions about melatonin. If you haven’t already, consult your PCP. I don’t want to give bad advice. Apparently there are some concerns that melatonin will disrupt your sleep patterns, or something to that effect. I don’t take it, so didn’t pay close enough attention to recall the details.

I wake up with hip pain after about 6 hours. If I’m lucky, 7 hours. Used to be 4 hours a year ago, so that’s progress. Ever since I shattered my spine, and they fused it. Doesn’t seem to matter what position I’m in, either. It just starts to hurt and I wake up.

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Thx, Sheila. I added it to my Amazon Subscribe & Save so I should, receive it around the 23rd.

Now that the hubster stays in bed all night, I feel freer to indulge in deep sleep.