accomplishments!

[alstroemeria]

Aide Shaina & I took the hubster to get his ID at the DMV–they let us cut the line to get his photo done. Then we took him to Costco to get his glasses adjusted. I could not have done either of these alone. The new handicap placard was helpful in both parking lots.

Shaina also showered and dressed him etc, and made his bed after I laundered the bedding. And watched him when I dozed for half an hour.

After all that he chowed down big time on lunch (huevos rancheros)! While I was in the kitchen rinsing his plate and getting him a fudgicle, he fell asleep. Luckily I gave him his noon pills before lunch.

[1poorguy]

You got lucky at Costco. At least the two we go to are always packed, and there is seldom a handicap space available. We have a placard for my MiL, but seldom get to use it at Costco.

In fact, last time I didn’t see an open space anywhere. I had to follow carts and wait for someone to unload and pull-out.

It’s one reason I’m long COST…they do boatloads of business.

[alstroemeria]

Do you always go on Fridays or the weekend? In the afternoon? These are the busiest days & times. Our Costco isn’t crowded at 11am on a weekday other than Friday, just an hour after opening. We only had to wait for one quick customer at the optical dept. Most handicap spots were taken, but several were available.

[1poorguy]

This last visit was on a weekend. But usually we try to go on weekdays. It’s a little less busy, but still all the near-to-the-door parking places are occupied. Also, usually the shady parking places, too (those tend to be further from the door, but in AZ those can be highly prized spaces).

[sheila727]

Productive and calm! So good!

=sheila

[alstroemeria]

Productive and calm! So good!

The calm before the storm?

He ate no snack and almost no dinner after a big (for him) lunch. Then instead of falling right asleep as usual, he started climbing out of bed so I grabbed the bucket and helped him stand. But he wouldn’t pee. He hadn’t pooped in a few days so I thought maybe…and took him to the toilet. Nope. On the way back to bed, he abruptly sat on the bathroom floor and wouldn’t get up. Over 4 1/2 hours (6-10:30pm), he’d get up, move a few steps, sit down, go to sleep, lather rinse repeat. By 8:30 he was actually on the floor by the bed–and pushing himself under it again <sheesh!>. After innumerable tries I finally got him up and into bed about 10:30, and he finally went to sleep. I didn’t want to call the fire dept again after what one fireman said to me the previous day (something like "don’t you have round-the-clock care? I said I would if I could afford it-).

He awoke about 1am to pee. Peed in the bucket, then woldn’t get back into bed but followed me into the bathroom where I put down the bucket. I noticed he had peed in his Depends and got a fresh pair. Just before I got to him he abruptly fell and his his head, I think on the marble bathroom threshold. Lots of blood. He said something low ow, but not loud, and put his hand on his head. I pressed a towel against the wound and called 911.

He never lost consciousness or made another sound. Before the time EMTs arrived, he was on all fours trying to stand and I was holding him down with the towel and a hand on his shoulder. They bandaged his head and the 3 of us helped him to bed. They took his vitals (all perfect), then helped me put on clean Depends. I declined taking him to the ER.

At 8am I left a msg for hospice at the only phone number I have so far–the original intake person who called me. I asked to be called back and for the nurse or dr to come see him–esp someone who can evaluate if he needs staples/stitches and can preferably do that at home. I have no aide today (Shaina’s coming Saturday instead) so would not drive him to the ER by myself anyway.

After the EMTs left, he fell asleep pretty quickly. Didn’t wake up till 7:40 this monring. I had just gotten up at myself, which presumably awakened him. (If only I could sleep that long every night!)

For those thinking “He should be in a facility or have 'round the clock aides,” as I’ve explained, I can only afford that with a guarantee it won’t last more than a year or so (I’d take the $120,000+ hit to savings–a substantial fraction, but doable). And, as I said, his happiness (OK, contentment?) trumps safety. In a facility, he’d be drugged into snoozing most of the day and restrained 24x7. That’s no life (alas, too many people live it-).

He ate more breakfast than usual. He then got out of the recliner and I took him to the bathroom, where he finally had that poo(!). Not constipated–thanks to yesterday’s lunch of huevos rancheros with lots of refried black beans

Before the EMTs left, they brought the wheelchair from the car into the house so I moved him from the bedroom to den in the wheelchair (had to force him into it).

He isn’t bleeding, and I’d love to clean the matted hair (in the back just below the crown) and see the wound, but don’t want to draw his attention and have him pick at it/remove a fresh bandage. So waiting for a nurse/dr to see him.

ASIDE
One of the wheel locks on the wheelchair is busted. I need to remember to ask if hospice could repair–or my handyman who’s coming next week–or ask for a hospice wheelchair for him. They have offered one, but I declined since I already have one.

I washed his bedding just yesterday, but now his pillow and fitted sheet are bloody as he pulled the bandage off on purpose or by accident in the night.

Took quite a while to clean up the “crime scene” in the wee hours of the night. The biggest puddle of blood by the bathroom door molding (and under it-) was coagulating already. I’ve never seen that before.

[sheila727]

The calm before the storm?

I sure spoke too soon!

Thinking ahead… So you’ve already worn out your welcome with the Fire Dept guys, who have advised you that you need round-the-clock help. And hospice care provides some supports, but still leaves you doing much of his care solo despite the dramatically increased burden that this now presents. You say that you would be able to pay for round-the-clock help for roughly a year. But if he lives beyond that, you would no longer be able to do so.

Based on the experience I had with my father, who had Alzheimers, I suggest that a consultation with an elder-care attorney may be extremely valuable at this point. We had initially seen an elder-care attorney at a point when the woman my mother had in every day (to clean, cook, help her) was able to provide any help my dad needed. But it was recognized very clearly that he would pretty soon need 24-hour live-in care. It was also clear that my parents in no way could afford it, nor could my brother and I take care of that financially. The attorney determined what we need to do so that my dad would be eligible for community-based Medicaid after 1-year’s time. There was an annuity that had to be cashed in (and the loss eaten), there were savings in my dad’s name that he gifted to me (and I put into an account set up to use for expenses of his), and the house, which was in my mother’s name, was signed over to my brother and me but with the proviso that she would continue to pay the taxes. That way, the Medicaid people could never come after her at some point and take the house. So we successfully applied for Medicaid for my dad after a year, and then he was set up with a home-care agency that provided 2 live-in aides—one for Mon-Fri, and the other for weekends. And the agency took care of payments. Then after my mom died, we successfully applied for Institutional Medicaid, and had already chosen an excellent place for my dad in Rochester, NY, a 10-minute drive from my brother’s home. We moved him there when a Medicaid-based bed opened up (the majority of beds there were private-pay, with a certain number dedicated to Medicaid-supported residents.) It was a wonderful place. And he was there for over 5 years.

I know that Medicaid requirements differ from state to state, but it is worth finding out if there is any way that hubster—if he is still alive a year from now—could be enabled to be eligible for Medicaid—community or institutional.

I’d also get in touch with his neurologist, let him know clearly how feeble hubster has become, his diminishing food intake, etc, and ask if he is able to make any kind of rough estimate as to how much time he feels there is at this point. It wasn’t all that long ago that you used to describe hubster as hale and hearty other than his brain, a good walker etc, and you’d predict that he’d outlive you. But that is sadly in the distant past now, and the degree to which he has deteriorated requires skilled help around the clock. You need to try to get a sense as to whether he may live more than a year. And if there is a chance, then it’s critical to find out if there is a way to enable hubster to become eligible for Medicaid.

((((Alstro))))

=sheila

[bosslady52]

(((alstro)))

[1poorguy]

Rec’d your post, but thought I would add some emphasis with a reply.

Based on the experience I had with my father, who had Alzheimers, I suggest that a consultation with an elder-care attorney may be extremely valuable at this point.

Yes! She desperately needs the advice of someone who knows what’s what in SC. A few hours of his time would be money well-spent.

But that is sadly in the distant past now, and the degree to which he has deteriorated requires skilled help around the clock.

Yes again. I would comment further, but I just want to emphasize what you said instead.

[alstroemeria]

Already done.

[alstroemeria]

Round the clock care at home is much more expensive than a facility. I couldn’t afford that for a whole year ($15k/month!). And I bet the cost goes from $25 to $30/hr next year, if not sooner.

He isn’t a patient of his (former) neurologist any more. Just the hospice dr who I apparently never get to see or speak to but can send msgs via the nurse. Apparently s/he’s taking my advice on DH’s meds.

His regular nurse, Jennifer, is great. She’s going to come back tomorrow to check his wound after his shower. She said the hubster has miraculous healing powers–his gash was well on the way to healing when she examined it after 9, 10 hrs. Cleaned his scalp & hair a bit, superglued his cut. The hubster slept through it.

Neurologist had no idea how long the hubster might live. DH is unusual for someone with dementia. Exceptionally robust immune system, no chronic conditions other than dementia & enlarged prostate, never had problems with any organs, no cancer or anything else serious ever, wiry and strong (alas, capable of escaping a hospital bed with tall railings-).

He fell on his head twice within the past 24 hrs and kept on ticking and behaving (his-) normal.

I’m not sure what kind of skilled help you think he can get. Aides are younger and stronger than me, and each knows a few things I don’t as they have experience with several dementia patients and have worked in various levels of senior facilities and private homes. Both my mother and brother have fallen at their facilities–it can’t be prevented entirely.

He was starting to doze in the den at 4:30pm so I rushed dinner and had him in bed and done eating by 5. He fell asleep by 5:15, but woke up ~5:30, so I helped him up to pee, but nuh-uh. And again a half hour later. The next time I held him prisoner in bed and he eventually went back to sleep. It’s painful for me to get him into bed as I have to pull his legs up and over. Awful on my neck, upper back, and shoulder muscles. I’m going to have to start getting massages…

[1poorguy]

Already done.

Good. Now the next bit is to follow his/her advice.

Is that how you got into hospice?

I don’t know how one would predict mortality from dementia. Cancer they do all the time, based on how large and aggressive a tumor is. But I would think his condition would necessitate him falling and breaking his neck, or the part of his brain that controls heart and breathing stops working. That could be tomorrow, or ten years from now (to the best of my knowledge).

The pace of his decline seems to be exponential. It wasn’t that long ago I remember you saying he could utter comprehensible sounds, like requesting a movie. That’s far from where he is now, and in only a couple of years.

[sheila727]

He isn’t a patient of his (former) neurologist any more. Just the hospice dr …

I realize that, but I figured you could still ask him that question. He was the guy’s patient until very very recently, and is in the best position to have a sense of how much time he has. But you say that he has already said he has no idea.

DH is unusual for someone with dementia. Exceptionally robust immune system, no chronic conditions other than dementia & enlarged prostate, never had problems with any organs, no cancer or anything else serious ever, wiry and strong… He fell on his head twice within the past 24 hrs and kept on ticking and behaving (his-) normal.

His immune system is not the whole picture, nor is his being “wiry and strong.” You’ve mentioned in recent posts how his muscles are atrophying because he is now completely sedentary, and you also describe his highly unsteady gait. And having fallen twice in the past 24 hours is extremely concerning. The fact that his wounds were relatively superficial and he “kept on behaving his normal” is not a reflection of his strength and resilience, but simply luck that he hadn’t wacked his head on something that would cause severe damage. But it’s just a question of time until he does. I also doubt that his ability to climb over the bed’s guardrail will last significantly longer. As you’ve noted, he doesn’t use his muscles now, and they will rapidly get weaker and weaker.

You indicated in your other note that you have consulted with an elder-care attorney. What did you learn about husbster’s potential for Medicaid? Are there any moves you can make to enable that? Or is it not possible?

As to what an aide can do…you need aides who are experienced, patient, and strong.

No easy answers!!!

=sheila

[ptheland]

And having fallen twice in the past 24 hours is extremely concerning. The fact that his wounds were relatively superficial and he “kept on behaving his normal” is not a reflection of his strength and resilience, but simply luck that he hadn’t wacked his head on something that would cause severe damage.

This.

My wife was unsteady for years. Took many falls during that time, including a couple that needed stitches. Then there was the one that was one too many.

—Peter

[1poorguy]

I know a guy who was on a ventilator with COVID for 3 weeks. He was in the hospital a bit longer (5 weeks?). He had to go to rehab to relearn how to walk, and build his muscles again. It is surprising how fast the atrophy happens. (Which is a long way of saying “yes, they will rapidly get weaker and weaker”.)

[sheila727]

This.

My wife was unsteady for years. Took many falls during that time, including a couple that needed stitches. Then there was the one that was one too many.

And there’s more, although not as dramatic. But studies have been done and the data are clear. Older seniors who sustain a fracture from a fall—often a hip—the probability of death within a year from the accident is very high. Alstro—I know that your mom sustained a hip fracture from a fall, and survived. But many elderly in that situation do not survive.

Hubster’s unsteady gait and recent falls herald a faster decline.

=sheila

[alstroemeria]

How he got into hospice:

At his last neurologist visit, I tossed off a comment to the dr. Remember, I said, to tell me when you think he’s ready for hospice. His answer: He already is.

So the impetus to get him into hospice was a generic comment from me and a specific response from the neurologist. One can’t get into hospice based on desire or convenience or even health status. You need a doctor’s recommendation, and it’s the doctor who contacts hospice.

Predicting mortality with dementia is more easily done for ALZ as there’s been much more study of it compared with other forms of dementia. PPA is so rare, not so much is known. Median and mean life expectancy after diagnosis are 7 and 8 years. 12 years is an outlier. The hubster was diagnosed 15 years ago. With 2 degrees from MIT, hobbies like orchestral conducting and walking, I suspect he had more brain cells to lose than most. Plus having attentive care at home, good diet, vitamins etc. And continued working for several years (teaching college computer science). And he’s blessed with several physical advantages in his immune system and heart & lung resilience. Few PPA patients are still mobile at this point. And he only became seriously demented after seizures started.

2/3 of all types of dementia patients die of pneumonia (fewer of PPA patients though). The rest mostly of heart stopping. Now that the hubster’s on hospice, he won;t be getting things like a feeding tube to prolong his life (personally I think feeding tubes are cruuel unless there’s hope of recovery). Difficulty swallowing is also a hallmark of late stage dementias.

He slept till 3:45am (no midnightish wakeup!) and got up to pee, most of which ended up in his Depends. I couldn’t get him back to bed after–he stood in the little hallway between the master BR and BA and eventually sat and then lay down on the floor there, head poking into my closet. I get out of bed every few inutes to encourage him to come to bed, but nuh-uh. He’s still awake. He & I probably cut back anti-psychotic and zoloft too much to keep him steadier on his feet (less Parkinsonism)–he via refusing and spitting out his pills, me via reverting to the older lower doze olanzapine I still have after running out of higher dose pills. I requested a new prescription of lower dose–smaller pills, which he doesn’t reject, plus more flexibility.

Pace of his decline has gradually sped up from the beginning, but took a huge leap after each seizure. He needed no help with ADLs when I broke my leg 2 years ago, little help a year ago, and a lot of help for the past few months. Krystal, the aide who started a few months ago has witnessed the steep decline since she started. But the aides see less of the crazy, which increases in the afternoon, evening, and night-time. They only come in the morning.

[jrdown]

alstro ~

May I ask a question? At what point would you consider hubster being in a facility?

The increased falling, decreased food/drink intake, increased sleeping hours, no
meaningful interaction except very sparingly (I include the one time last week you
said he winked at you but it had been a long time), no communication, no comprehension,
preference for sitting and sleeping on the floor and making it very hard for you to
move him about and get him into bed point to the need for help via a facility very soon.
You did say that it is hard for you to move him about because of the pain it causes you.

It was unclear to me if you said the facility would cost $15k/month or if 24-hour help
would cost $15k/month. Then you mentioned that the cost of an aide would likely increase
from $25/hour to $30/hour by 2023 if not sooner. If you have $150k that could be used
for round-the-clock care for hubster could that not be accessed easily? You didn’t answer
Sheila’s question of whether you had spoken to an elder care attorney regarding being able
to discuss when and how to get the ball rolling for Medicaid. It might be worth checking
with your financial advisor about protecting yourself with regard to income needed to
see you through retirement and the options about withdrawals.

Robyn

[1poorguy]

I was also curious about Robyn’s question, if you’re willing to discuss it.

As for sleeping on the floor, let him. I don’t think it’s doing any harm at this point. As long as he’s not wandering around (potentially falling), he’s relatively safe. If he parks on the floor, it’s not going to hurt him.

[sheila727]

In terms of hubster no longer being under the care of his neurologist because he’s in hospice, I came across a hospitce-related blog that refers to this as a very common misunderstanding. The rule actually allows Medicare reimbursement to one non-hospice physician whose care is related to the diagnosis requiring hospice.

“Can I still see my doctor while in hospice?” There is a lot of confusion about this question, even among doctors. The answer is “yes, but with limitations.” Only one MD or DO not employed by the hospice can be paid by Medicare for medical care related to the hospice diagnosis. However, all prescribers can be paid for medical care not related to the hospice diagnosis.

I found this when I was looking for information on longevity in hospice care, hoping to find some kind of helpful guide. But it turns out that the statistics aren’t relevant when it comes to hospice care for dementia patients. They tend to live beyond the 6 months that is the typical maximum, and there is no predicting.

=sheila