The hubster does better with salads if I chop ingredients small and give him a tablespoon to eat it.
Everything else needs to be cut bite-sized for him.
No biggie.
I do something similar with my son. Bite sized pieces are the key. But my son struggles mightily with spoons. Can’t keep them level. He does much better with a fork. Anything that can be stabbed with a fork works really well for self feeding.
We had chicken and dumplings for dinner last night. He can handle both the chicken and the dumplings pretty well. But the sauce is a no go, and the veggies are usually too small to stab. So I help him with those.
—Peter
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aargh. My W/F aide texted that she can’t come tomorrow as her dog has an issue and her vet can’t see him till tomorrow. I asked if she could come thursday instead, but she just last week took on a Thursday client. Grrr! I was going to ask her tomorrow if she wanted to come Thursdays, too. Guess I need a 3rd aide as my original aide can only come M or T (not both) depending on which day my brother doesn’t have PT. I hate DH having to cope with 3 different aides 
Also I trust these 2 unsupervised in my house. I don’t give such trust easily.
The hubster does better with salads if I chop ingredients small and give him a tablespoon to eat it.
It’s like with an infant or toddler, figuring out a way to enable them to cope with something that had been a challenge.
=sheila
I asked if she could come thursday instead, but she just last week took on a Thursday client. Grrr! I was going to ask her tomorrow if she wanted to come Thursdays, too.
I guess that’s a lesson for the future. When you hope to snag someone/something, don’t wait to ask about availability. Do it without delay. If it’s someone/something desirable, odds are that someone else may beat you to it if you wait.
That is such a shame! Good luck in finding someone good and trustworthy.
=sheila
Out of curiosity, have you thought about, or made, arrangements for when you are no longer there? I assume he is likely to outlive you (as children should).
I sometimes wonder about that (in general, not specifically in your case). Ward of the state? If he has cognition (which it sounds like he does), that might be horrible for him. A facility that can’t toss him out if he’s too much of a nuisance? The article posted recently has me wondering about that too.
Just curious.
have you thought about, or made, arrangements for when you are no longer there? I assume he is likely to outlive you (as children should).
Thought about it a lot. Have a special needs trust set up to help pay for some bits. I also am a conservator of his person - but with mostly shared rights. He maintains most of his rights, but I can also act on his behalf for things like medical care. It’s mainly there to deal with situations where someone believes he lacks the mental capacity to make decisions for himself. If that happens, I can step in with the conservatorship and take care of things without waiting for any further court processes.
In our case, he will likely out live me. His condition (cerebral palsy) is mainly a brain injury. And in his specific case, that injury isn’t devastating, as it can sometimes be. Life expectancy for people with CP is sometimes broken up into two cohorts. Those who can walk - even if it’s with a walker or other assistance - have a life expectancy similar to the general population. If you can’t walk, the average expectancy is much shorter. But that is calculated as of early childhood. So those who are the most severely affected drag that second group down. I’d put my son sort of in between. He can’t walk, but doesn’t have the issues that many others in that category do. I could easily see him living into his 60s or longer if he has good care.
Then add in that I am almost 40 year older than him, and the odds say he will out live me.
I sometimes wonder about that (in general, not specifically in your case). Ward of the state?
For those with developmental disabilities, the state (at least in CA, don’t know what happens elsewhere) does step in a bit. You end up with a combination of SSI disability benefits, medicaid, food stamps, and perhaps a couple of other things that will take care of those disabled from birth. The SSI will go straight to the housing facility, along with the food stamps. Then there’s day activity places or sheltered job workshops to fill their week days.
All in all, not great, but way better than living on the street.
If he has cognition (which it sounds like he does), that might be horrible for him. A facility that can’t toss him out if he’s too much of a nuisance?
Yeah, that’s an issue. He is very aware of things going on around him and in the world. So lots of cognition. Not at all atypical for one in their early 20s. His book larnin’ (formal education) isn’t up to snuff. He didn’t get a high school diploma. But he was also a very late bloomer intellectually. He also has some difficulties reading - probably related to the CP. But almost none in understanding. He’s actually enrolled in a high school completion program at a local community college. And as long as he can deal with the reading issues, I don’t expect any other significant hurdles. Except algebra. Gotta get through an algebra course. That’s going to be a challenge.
He also thinks that he will just keep living in this house after I’m gone. I’d love for that to be the case, but it’s doubtful. He will need too much care, and I’m not going to have enough of an estate to accomplish that. Those benefits I mentioned above have some pretty severe income restrictions. He needs to be destitute to qualify for them. And if I leave him more than $2000, he will no longer qualify, and will continue to be disqualified for 2 years after he has spent everything down below $2000. Hence the special needs trust. That trust will receive my estate and pay only for things that the state won’t. That will end up being things like a cell phone, video games, tickets and transportation to events (likely baseball games), and even theme park tickets.
His biggest issue after I’m gone is going to be companionship. He is a people person. He needs to be around people. Fortunately, most people like being around him, so hopefully he and his future caregivers will find a way to make that work. Because if they don’t, it will be - as you say - horrible for him.
In the next decade, I will likely have to find a place for him to live. There are plenty of possibilities around. The main issue will be his acceptance of that. Hopefully, we can work on that over the next few years.
All in all, not the most pleasant planning I’ve had to do.
–Peter
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The first thing the kids told me when I told them of the hubster’s diagnosis was, “Don’t worry Mom–we’ll take care of him when you’re gone.”
They both live in condos (DD & family of 4 in a 1200 sq ft 2BR condo; DS/GF in ~850 sq ft condo) so they cannot take him in–or me, for that matter–even if they wished to. Probably put him in the same MC facility as DS’s GF’s grandmother who has ALZ (near them in MA and they visit often), and use his income+our savings to pay for it till it runs out–if anything left, the kids get it.
He did come to bed ~1 am. I went right to sleep. But he got up again at 1:45 (which woke me) and examined my dresser, then his closet, then sat on the floor in the short hall w/out closets.
He woke me out of a dream, the last bit of which I can remember: I found a large puddle in the house, but it turned out to be a plumbing leak!
So after a good day, a bad night. I’ll ask his neurologist for advice about when to give him sleeping medicine tomorrow. I won’t crush it again–maybe that’s a problem.
Also he hasn’t pooped in 2 or 3 days AFAIK, which tends to make him act weirdly. I forgot to look for prune juice at Publix yesterday (forgot to put it on the list), but I did get him raisin bran as a treat for breakfast (I normally don’t buy sugared cereal). He had 3 bean salad yesterday and the day before. The last 2 times I gave him colace, he spat it out. I was going to make Chinese beef & broccoli for dinner tomorrow…er, today. But I think I’ll fix bratwurst w/baked beans & sauerkraut and give him a large serving of beans(!).
He is too much of a nuisance for a facility without a private aide (extra cost) so I expect they’d drug him into oblivion and then he’d be like the little ol’ ladies at Mom’s nursing home, lined up around the lobby tv, dozing in their wheelchairs. Mom refuses to join them.
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Apologies. I just saw 1pg’s question and assumed it was addressed to me. I’;m getting awfully self-centered, it seems! Then again it’s 2:37am and I’ve gottne less than 2 hrs of sleep tonight.
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No apologies needed for me. Planning for what happens to our disabled loved ones when we caregivers are no longer around is an important issue to discuss. It is good to hear different perspectives.
—Peter
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The first thing the kids told me when I told them of the hubster’s diagnosis was, “Don’t worry Mom–we’ll take care of him when you’re gone.”
Meant to reply to this…
So you’re saying it is sort of like when they wanted you to buy a puppy, and assured you they would “take care of it”, and then you ended up doing it? 
Sounds like they’d have to move and/or rearrange their lives to fulfill that promise.
1poorlady had planned on my mom moving in with us eventually. It’s a cultural thing. It’s just “expected”. I was hopeful mom would be able to stay in her home, and be carried out feet-first (as she also intended). Dementia messed that all up. I have no confidence that we could deliver the care she needs. Maybe for now we could have, but where she is going we could not follow. Cooking is easy. We do that every day anyway. But she has been prone to falling for the past few years. She’s not remembering the name of my MIL or our daughter. She has odd hallucinations (often auditory and tactile). And her paranoia would really affect 1poorlady…if she accused “someone getting into my things”, 1poorlady would take it personally.
And it will only get worse. Better to have found her a nice place on her own, that can adapt to the increasing levels of care that will be necessary.
You might ask the kids how they intend to fulfill that promise given their current living situations. Might give you some peace of mind that they really would handle it, or alert you that you probably need to have contingency plans in place.
1poorguy
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The first thing the kids told me when I told them of the hubster's diagnosis was, "Don't worry Mom--we'll take care of him when you're gone."
Sounds like they’d have to move and/or rearrange their lives to fulfill that promise.
There’s a big information gap there. What do they mean by “take care of”?
One person might hear “move in with them and personally attend to their needs.”
Another person might hear “pay for their care.”
And there’s a whole potential for situations in between.
Then, let’s not forget that mom might still be around but unable to care for her husband. (Feel free to reverse the roles - that’s just the way this particular situation evolved.) The promise only involved when she’s gone.
Now that I’m done analyzing this like an arm’s length contract, it really points up the need to talk things over with the kids again. Alstro is getting additional time from aides - something that I’m sure was badly needed. But the hubster is only going to continue to decline. She has some relief for now, and she sure seems to be taking advantage of it to get some life back. That’s good.
But it will not last forever.
–Peter
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One person might hear “move in with them and personally attend to their needs.”
Yeah, that’s what I heard. Probably because the context is a wife who is doing that already. But you are absolutely correct that I shouldn’t have made the assumption that the kids would just step-in.
Another person might hear “pay for their care.”
Don’t know their financials, but based on her description, I would think that would be the case.
…it really points up the need to talk things over with the kids again.
Definitely. And an elder attorney might be helpful there, too. The husband has whatever the couple has, but I don’t believe the kids’ assets would in any way be involved unless they comingled them as part of “taking over”. I don’t know for a fact, but I suspect that would be a bad idea. Like I said…another reason to consult an elder attorney before any of this becomes an issue for the kids (and I still think alstro should do it since his care is an issue for her NOW).
1poorguy
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