Betwist and Between

I am "inbetween".  Siblings have their support websites.  Parents have their support websites.  In laws have....well, we make it up as we go along.  As our special needs charges sometimes slip through cracks in life and in "the system", well, the in laws do to.

Sometimes it doesn't seem fair.  But then I read a story like this one.

I have to respect what my husband was...well he wasn't born into it because Bil is younger than him, but never the less he didn't "sign up".  When I married, it was for love, and maybe an understanding because my father was disabled.  But I doubt it, I think it was more youth marrying for love and not for what the future might bring.

For what it is worth, Bil will never be able (in my best judgment, and in the judgment of his Medicaid Service Coordinator) to be quite as independent as the author's brother.

Still, the man who wrote that article in the NY Times was able to "step up to the plate" when it was time.  I know one day we will get that dreaded phone call, and it will be our time.

Why does planning for that day seem like walking through gluey quicksand?

Bil at the Lake

My mother in law, sister in law, Bil, other brother in law and his wife, and my husband spent the afternoon at the brother in law's lake house in Pennsylvania.  A good time, I think, was had by all.

It's a lot of work, this lake house, for my brother in law and his wife, but she loves to entertain.  She talked about possibly having my mother in law up again in September.

As I expected, Bil occupied himself at the lake by watching the Weather Channel.  My other brother in law's wife, who is very sociable and outgoing, tried to engage Bil a couple of times without success.  She didn't (to my surprise) ask Bil to help prepare dinner, which she has on other occasions.  She really does a good job in trying to draw Bil into learning new skills. 

My mother in law helped chop vegetables for a salad.  She talked a bit about how lonely she was-her next door neighbor, (a widow who grew up about 20 years and a mile from where I grew up) who is also a good friend, occupies a lot of time with her family.  This has always been the case but my mother in law is becoming more and more dependent on her-to help her drive places, and so forth.  The shame is, once of her nieces lives only a couple of miles away but with 3 busy children, hardly even says "hello" to my mother in law.

And yet this niece's aunt- my mother in law's sister and, until she died a couple of years ago, this woman was taken care of by my mother in law.  (there were three sons but two of the three hardly paid any attention to their mother.  How sad.) My mother in law took her sister shopping, to almost all of her appointments, helped her with some light personal care and so forth.  And now....nothing in return.  It's really sad.  I pray I don't suffer a similar fate.

At any rate my mother in law treated us to some cookies which, she admitted somewhat sheepishly, cost her $18 a pound.  She doesn't have that kind of money!  But she can't break the habit of all those years when her husband was alive and she (after a childhood of poverty) finally did have some money.

We ate dinner outside and Bil, after eating, went back to the TV as is his habit-but to my surprise came outside a few minutes later.  He sat apart from us but he is always watching-it would be a little creepy, honestly, if you did not know him.  Again, you never know what is in his thoughts.

The future planning thing has stalled out somewhat.  We need to get back on track, but some immediate family issues in our family are hindering it.  Ah, this juggling act.  Ain't it wonderful.

Bil and the Mobile Home

Bil is up here (staying with my other brother in law and his wife) for a couple of days.

We went out to eat at a cheap but OK Italian restaurant-to our surprise Bil ordered vegetable lasagna (maybe because his mother did). He didn't say a word during the meal-just stared into space.   That would fool most people but I know he was picking up many details of what was going on around him to process in his own way.

Afterwards we went to my son's pride and joy-the mobile home he is moving into out in a country mobile home park.  He, again, just looked around.  I don't think he was that happy to be there because there was no TV (no money for cable or satellite yet and there is no reception up there otherwise) for him to watch the Weather Channel on.  But who knows-a mobile home may be an option for him-it isn't all that expensive (compared to other forms of housing) and he could be totally "alone" if he wanted to.  One nice thing about country living (I've lived both in NYC and in deep country, much deeper than where this park is) is that people tend to be "live and let live"-although they also know your business in a very deep way.  Both might be good for Bil.

This particular mobile home park seems very strict - they make sure it doesn't get "trashy", are particular about tenants keeping their grounds clean, mowed, no junk cars, that kind of thing.  This really may be something to look into, if Bil could get the supports he needs there.

A thought.


Later today we will all be going to my brother in law's lake home down in Pennsylvania.  I think he will be happier there.

Bil Must Move Out!

My mother in law wants to stay in her house "forever".  With her increasing physical problems I don't think it is going to be possible.  I want to honor her wishes but more and more I don't think it is right for her.

She is in so much denial.

She walks with a cane when she would probably be much better off with a walker.  It took several falls for her to admit she needed the cane, during which she did probably permanent damage to one leg.

She's had several recent small accidents with her car (fortunately, all involving her garage-nothing on public roads-yet).  The back of her car looks like a war zone.  There is no good public transportation where she lives and Bil expects her to be practically an on-call chauffeur.

She's had the "I've fallen" medical alert button for over three years now but refuses to wear it except when she is in the shower.

I think she needs to leave that house, and needs to be closer to two of her three non-disabled children.


I am very concerned about recent complaints that she is "bored" all the time.  Her good friend and next door neighbor spends much of the year out of state, and she is with family when she is in town.

She seems to want to be in front of the TV more and more.

On the other hand if she moves up here with Bil:

1. the cost of living up here in the Triple Cities is so much less than where she is in the NYC suburbs.

2.More transportation options if she has to give up driving. (I suspect that day may be closer than my husband wants to admit to.  I'm still worried about her recent accident where she drove into the garage with the garage door closed because she "got distracted". That's her reasoning for everything that happens.  She fell because she got distracted.  She misjudged parking because she got distracted.)

3.  I'm more and more concerned about the way she is spending money.  She feels she must be as generous if invited to a wedding, etc. as she always has been, for example.  And, she got invited to two weddings in three months "and had to buy a new dress and a new purse." for each one.  Well, no she didn't. But many years of spending without looking much at price tags (even though she grew up poor) isn't going to just stop.  When we looked at her spending, we were shocked on how much she was spending on food.  For just the two of them.

Of course, me (the daughter in law) is going to bear the brunt of caretaking.  Isn't that what always happens?

So what about Bil?
I think moving out for him would be the best thing to happen to him.


Whatever happens he MUST get settled in a housing situation before something really bad happens to my mother in law.  Because I don't know how he will react but it won't be good if she isn't there to cushion the change.  I've been told by his medicaid service coordinator that Bil is resistant to change to a greater extent than many people with autism.


Perhaps her moving out of her home might be a catalyst to her seeing that she MUST let go of him.  Not to stop being a mother who loves him but it is past time that he experience whatever degree of independence that he is capable of.

I hope we have time to talk about it this weekend when they are up here.

Independence Issues

Mil, Bil and my sister in law are coming up Friday.

Bil will have several experiences.  Friday, we'll be going to a casual pizza restaurant.  Saturday, everyone is invited to my local brother in law's lake home.  We haven't been there in several years. The family will stay there overnight.  So Bil will need to stay in a place he hasn't been to more than a handful of times.
Will it be violent?  Truly we have no way of knowing. 
Probably he will spend the entire time watching TV while the rest of us have a BBQ.

It will be interesting to see what turns conversation takes.

I've been reading an interesting book called The Daughter Trap about daughters and eldercare issues.  It is a lot more than a rant about the sacrifices daughters make to take care of elderly parents-a lot more.  My husband and I (he hasn't read the book) discussed some points brought up by the book during our exercise walk yesterday evening and he shared some things Mil has told him that he hadn't before.

Mil is complaining a lot about "boredom".  We both suspect she is depressed, which is not unusual.  More on that in our next post.

Anyway we will see what happens this weekend.

ARC Survey for Siblings and Parents

I was told about a survey on the ARC website.  After dinner I am going to tell my husband about it - I will probably have to fill it out but I want his feedback.

Don't know if I can get my mother in law to fill it out and if it is worth trying.  I do want to mention, ARC, that I appreciate very much you reaching out to siblings, not just parents.  Sometimes we sibs (and sib in laws) are the "forgotten ones" but we can be just as much caretakers as the sibs.

I hope this survey is more than a gathering of information.  Guess we will see.

Knee Problems

It's official, my mother in law (mil), Bil and my sister in law will be coming up later this month.  And with that, other news:

My mother in law's knee has gotten so bad that she is talking about checking out a local hospital that has been advertising about their state of the art orthopedic program.

I have knee problems (for us both, the main problem is arthritis) but no where near as bad as hers. And, I am 25 years younger than she is.  Still, when I've had times when I can barely step up on a sidewalk curb without agonizing pain, I think of her, living alone except for Bil, in a split level house.  Her bathroom and bedroom are up stairs, Bil is located down stairs, although luckily for her, not a full flight of stairs either way.  He won't volunteer any help unless she asks. 

She had an entrance built directly from the garage into her house, and that is going up and down stairs, too.  In fact, that stairs is where one of her falls occurred.

But back to my mother in law, the fact that she is even entertaining something like knee replacement surgery is a sign of just how much everyday pain she is in.  It's frightening too, in that I personally know a couple of not so good outcomes to this type of surgery (to be blunt:  one person who ended up fighting c. difficule - which at her age could be fatal-and it took months, and several trips to the ER to recover- and, someone else who did die post op, from a hospital-based  infection that the doctors never quite figured out.  (it could have been MRSA, but before the days when MRSA had a name.)

And, of course, how would we take care of Bil while she was recuperating.  She has had surgery before but it was a long time ago, back when her husband was alive and she still had (teen) children at home.  Now, she would need a caretaker.  And we are 150 miles away.  My sister in law, who lives about 20 minutes from her, would probably be elected once she was out of rehab.

I reckon we will talk more when she comes.  In fact, I don't know if she even attempted to get Bil the colonoscopy his doctor wants him to have.  She never talked to us again.  I have a feeling her physical problems have overshadowed this.

Worrying about Dementia

A post on a blog I like to read mentioned the horror of feeding dementia patients with a feeding tube.  This person knows thereof what she speaks of.  I've never had the honor of being a caretaker for someone with dementia and I pray I never am.

I know I am wandering a little bit from "autism" but there is something in common here-how we treat the most helpless of our society will bear on how we treat those with autism-some of whom need a lot of help (and some who can function quite well, thank you.)

When I think of this tube feeding post, I think of three people.

First, the sister of a work friend.  Said sister is in a nursing home, suffering from early onset dementia.  She is in her 60's and her mind is totally whereever the mind of a dementia patient goes.  We like to go walking sometimes, that workmate and I, and sometimes she excuses herself because she needs to go to the nursing home and help feed her sister.

Next, another work friend whose husband is in a similar situation, thanks to several strokes, and finally he too was moved to a nursing home after years of her caring for him at home.  She too is totally devoted to her loved one, visits him constantly, spends many of her non-work hours with him, or advocating for him.  Or thinking of him.

Finally, a cousin of my husband's, who cared for her father, in his 90's and with Alzheimers, until he died.  She never put him in a nursing home.  She did whatever she could, including partial home health aide coverage to give herself a chance to get away.  She even was treated for breast cancer during this caretaking period.  But she was bound and determined to be there for her Dad and she was, to the bitter bitter end.

And then I think of this blog post.  Who has brought us to this?  The insurance companies?  Won't pay for nursing homes to treat their residents like human beings?  [that being the case, what do group homes do for their residents?]

And you know what?  One day this generation of children with autism are going to age, and find themselves in nursing homes.  (shudder)

May someone care for me enough to save me from this fate.  And spare Bil, too.

UPDATE:  I may write more about this topic later.  But not now.  I decided this would be a bit off-topic.  So back to autism, Bil and Mil in my next post.

Dr. Lovaas and Me (Not but I wish)

Many in the autism field mourn the passing earlier this week of a pioneer in autism therapy, Dr. Ivar Lovaas.

In the world of autism, there was no "inbetween" when it came to Dr. Lovaas.  You loved him or you hated him.  Whichever end of this spectrum you are on, you have to admit that Dr. Lovaas changed the field of early intervention for those with autism forever.  Many have benefited.

It's tempting but I am trying hard not to play the "what if" game.  For Bil, there was no treatment, only a special ed program in school that failed him miserably.

Dr. Lovaas, back in the 1960's, started to pioneer an early intervention program for children with autism that became something now called ABA. (Applied Behavioral Analysis) It had its share of critics because originally it used something called "adversives" (i.e. there was an element of punishment) but Dr. Lovaas later changed his stance totally on this.  Today, many consider ABA to be the "gold standard" of childhood treatment.  It is said that some of these children, as they progress in school, even lose the label of "autism" all together.


In a way I am also sorry I never had the chance to look into this.  Back when Bil was younger....well, I just didn't know there was hope.  It was a different age and I was in a different place.  I can not beat that person up.  She no longer exists.  So, all I can give is an indirect tribute, as an "in law" of a man with autism. 

I know at least one area "autism mother" who did have that privilege of meeting him.  She is one very strong woman and I have to believe it was a life changing experience for her.

Dr. Lovaas opened many doors to children with autism either directly or through the ABA he pioneered.  He also opened the door to hope for their parents.  And isn't that what it is all about.

Hope.

Sometimes you Have to Laugh

Because even a serious blog needs a change of pace I present.....

Zach Anner!

Arguably the funniest man with CP on the planet, Zach is NOT politically correct.  Ya gotta love him-enjoy his videos!

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.