The Disabled Caring for Aging Parents

At one time, in New York, Medicaid Service Coordinators (MSCs) had to visit with their clients once a month and do a home visit every 3 months (so, in other words, they saw their clients in the home setting three times a year).

Now, with budget cuts, the visits are 3 times a year, and only one visit needs to be in the client's home.  So, in other words, home visits have been cut from 4 times a year to once.

I don't know the last time Bil had a visit at his home, where he lives with my mother in law.  But we are worried about my mother in law's falls (several falls in the past year), and went ahead and made the medicaid service coordinator aware of it.  I wouldn't be surprised if Bil mentions the last fall to the MSC, where he was unable to get her up on her feet and (fortunately she was conscious) she was able to give Bil instructions on getting help for her.  Fortunately, all ended well.

The MSC offered to do the annual home visit now, rather than wait another four months, to make sure all looked OK.  That visit will take place in the near future.

I wonder what effect the decreased schedule of visits will make in the lives of the developmentally disabled overall in NY State.  Bil is far from the only disabled person living with aged parents.  In Bil's case, she is visited regularly by other relatives.  But that is not always the case.  And I can't believe other developmentally disabled individuals don't cope with trying, in some way, to help care for their elderly parents.

We without disabilities have enough problems being caretakers.  I feel for Bil and this situation that, basically, his mother has forced him into without being willing to let him go into supported housing.  But he has taken on this burden. He's incorporated some aspects of his caregiving into his daily routing-such as automatically going into the car trunk to take groceries or whatever into the house.

But for enough things, he still can't help unless he is constantly coached.  And he won't do anything with cooking at all - anything to do with cooking (the stove, the microwave, etc.) terrifies him.

We've made the MSC aware of this situation, and we'll see if she has any ideas after the home visit.  Her help, of course, can only extend to things that benefit Bil, and we realize that.  But another eye on the situation will help us.

A Mother Who Cares for the Housing of Her Child

I haven't been reporting on Bil's Medicaid situation lately.  It has not gone well, and I would rather not talk about it.

We are not going to get much help as far as getting a housing situation for Bil set up.  Rather than vent my anger over the situation (while we try to juggle work situations, flood recovery from our community flooding in early September due to a tropical storm that dumped some 10 inches of rain on our fair community, and other issues including a health issue in my family) I found this blog post.  A mother with the energy to go through this process, the process that we just don't seem to have the will to pursue.  May she obtain what she hopes to obtain for her son.

It isn't that my mother in law doesn't care. It's that she doesn't get it and no one wants to confront her.  And someone we thought was going to be an ally in our efforts turned out not to be.  Shame on us for trusting that person.  We just don't have the energy to pursue it.  I am feeling quite overwhelmed right now.

Right now I really don't want to say more.  I will when I am ready to.

Bil and Diabetes

Well, we made our Christmas visit.  At Christmas dinner, the conversation turned to diabetes.  I found out some interesting things about the medical history of my husband's extended family.  Apparently some of his first cousins have diabetes now, and we found out one of his aunts (who lived to 90) had diabetes for a lot of her life.

We also found out that Bil is, as my mil put it, is "borderline diabetic".  Exactly what does that mean?  Who knows.

Other than the "gee thanks for telling us" (what does she expect if something happens to her and we don't know things?  Why do things have to be such a secret?) I was already having some worries over Bil's health.  He has a weight problem. He never exercises and mil never encouraged him to.  I won't say more, as I don't wish to disclose much medical info online.

One thing I will give mil credit for, she does make Bil eat healthy.  I know food issues are common among those with autism.  She cooks good meals for him and makes him, as we used to say in the old days "eat his vegetables."  Left to his own devices, he would eat nothing but chicken.

I'd really like to know what is going on, what his blood work looks like.  When mil is gone we will have to help Bil manage his health conditions.  It would nice to know what they are, so we can try to prepare ourselves.

Again:  why the secrecy?  I know she's afraid to give up control, but Bil is going to pay the price when she is gone, or incapacitated.

Sigh.

Bil and the Dentist

Sometimes I could take person-centered planning and....I wonder how many people with intellectual disabilities have been harmed by the assumption that the client always knows best.


This isn't true, I'm sorry to say, even if a lot of advocates will disagree with me.  


I am not going to compare Bil to a child, but let me ask a question of those advocates.  Would you let your toddler make his or her medical decisions?  I didn't think so.  Their brain isn't fully developed and they don't have the capacity to make those kinds of decisions.  If you did let a toddler make those decisions, wouldn't it be a type of child abuse?


Bil, of course is an adult, but let us be blunt, he has intellectual disabilities.  He is no child.  In the eyes of the law, he is able to make his own decisions.  But can he?



Bil has always resisted going to the dentist.  This is a common behavior among those with autism.  So my mother in law, without support from those who work with Bil, had stopped bringing him.   So we felt we had to step in, my husband and I.  I hate to invade his privacy in this way, but I have an important point to make.  He had breath that could knock you out at 50 paces.  One time I had to ride in a car with him, in the back seat, and nearly passed out.  I am not exaggerating.  This wasn't halitosis.  This was a sure sign (to me) that his teeth were rotting.


I've listened to my dentist, who teaches that periodontal disease can impact health dramatically, causing a host of other problems, including bacteria going into the heart.



We had several conversations with his MSC (Medicaid Service Provider).  She didn't seem to think it was a problem.  But finally, we got through to her, proving this wasn't more than a cosmetic issue.  It was a health issue.


Bless her, she found dental care for him.  This is not easy for people with autism to find.  We did some of our own research (the Special Olympics can be a source for this type of information, by the way and I would love to give a little shout-out to them) but she got Bil to the dentist.  He had to be sedated (this is common, too) and he was not well pleased by what had to be done to him.


But the dentist was able to treat what he found.  Thank heavens!


But left to Bil and his feelings about his health, his teeth would have kept rotting.


He was not capable of making an informed decision, any more than the man with stroke-caused dementia I wrote about in my last post.  


Why do medical people think they can treat the disabled like that?  Do they not deserve to have steps taken to preserve their health?  Are they not entitled to live their full life spans?

Let the Resident with Dementia Make His Own Medical Decisions - and What Does this Have to do with Autism?

In a word, don't ever think you can put your loved one with autism on automatic pilot.  And sometimes you have to battle the "establishment" to do right by your loved one.


I have a friend who is a caretaker to her ailing husband.  Over the past 6 years he has battled against everything from stokes to cancer (more than once for cancer).   He now needs 24 hour care and is in a nursing home.  After a number of strokes, major or minor, he has some lucid days-but more and more, the days are not lucid.  And, due to the strokes, he can not think clearly.


So, of course, let him make decisions impacting his health.  And let's not consult with loved ones first, such as his wife who is at his bedside nearly every day (in addition to working full time, I might add.) 


So what does this have to do with Bil?  Please bear with me.   The following is printed with her permission: (the names of the guilty having been changed), one of the latest of her trials in caretaking and advocacy:


"The speech therapist, just called and said that (her husband) was very clear this morning about not wanting to drink any more of the thickened liquids. (We've been going around and around on this since he got out of the hospital where he battled back from a variety of ailments.) [The speech therapist] explained to him that he's at risk for pneumonia if he aspirates something into his lungs. He answered very calmly and politely that he'd rather take that chance than drink anymore of that s**t, or go thirsty like he's been doing. And he said it in front of the nurse. So she's going to call [his doctor]  and ask him to change the order.

Even though I've been using that very argument, they still leave it up to the resident--who half the time isn't even conscious of what is going on!"


My friend's experiences are valuable learning opportunities.  I listen and absorb. 
The bottom line is....YOU are the person who has to look out for your loved one.


NEVER "leave it to the professionals".


And, despite person-centered planning (which I know I don't fully understand) you CAN NOT let a person with autism necessarily make his own health care decisions.  Yes, I know I will be ticking off a lot of advocates, but I think the pendulum has swung too much in the other direction.

Tomorrow I will write more about this subject.  I may have touched on this before, but I want to do so again.