Wish Us Luck in Gathering Information

In a few hours, we will be heading towards my mil and Bil's house.  Tomorrow, (we already gave my mil a heads up) we need to gather as much information as possible and hope we can also find a place with a copy machine to make copies of cards, bills and so forth.  Also, I hope my husband has time to speak to my sister in law about helping with this effort.  She is more local than any of us and needs to take more of a role.  She will do things if we ask but if we don't ask, she doesn't...she does care, I think things just never occur to her.

I know there is only so much we can do, and she is going to have to help with things that are best done locally.

I hope (and pray!) our approach to her is a good one and doesn't get her upset or get her defensive walls up.  I know that for her (and many of us) asking for help is an admission that you can't "do" for yourself any more. She was brought up in a generation that prized self reliance.  But she can't rely on herself any more, and to be quite frank, she never did much planning for her own disabled son- just assumed that her other children would be there for him.

Ah....stress.

Traveling with Bil

In July we are going to be taking my mother in law to a wedding in another state.

My mother in law needs some assistance physically; she walks with a cane.  it would have been helpful for her to have grab bars (for shower, toileting, etc.)  And, Bil will be coming.  He's been in motel rooms before but it isn't a comfortable experience for him, especially if he can't have his own "space".  On the other hand, one time he had to stay in his own room and that didn't work out well, either.


We've never been along with him where he had to stay in a strange place.  So this will be another new experience.


We were able to book an "extended stay" motel that is an actual suite (two rooms).  However, we couldn't get an "accessible" room at the block rate.  We went with a block rate room but it irritated me and I am going to investigate this further. 

The Open House

We went to the open house of the continuing care facility.

Not much to say.

They had a nice spread of fruit and bottled water out.  But, they only had one person giving tours and there was a small crowd waiting for her return.

What struck me?

There were no signs for the open house.  We had to ask the person driving one of those transport buses where it was.

There was only one person giving tours.  Funny for someone trying to sell housing that would cost in the hundreds of thousands of dollars (when all was said and done).

We did get some information.  We decided not to wait for the tour.  It may have just been a perception, but most everyone waiting for the tour seemed to be dressed in golf clothes, or otherwise....there was just a feel about the place.  A feel saying I am not sure Bil would ever have been welcomed.  As it is, he is too young anyway, so mil and bil would not be able to stay together.

At least we have the information on cost.

So cross that one off (probably) and "on to the next event".

How Can You Think Outside the Box When You Don't Know What is Inside the Box?

After a bunch of phone tag we have two local senior "independent living" places sending us literature.  And, just coincidentally, one is having an open house tomorrow.

This first place will not let bil live there.  Too bad, he isn't 62, don't care that he is disabled, he is under 62.  

I don't think my mil will ever be able to afford this place with the open house but we will check it out "just in case".  I'm not sure we will go to the open house but we did ask for the literature.

The other place....my mother in law and bil wouldn't be able to live in the same unit but they could both be there.  Again, I have a feeling the cost is going to be prohibitive.

In the meantime we hold our breath and pray my mil doesn't fall again.  We'll be down there in another week, and our work is cut out for us.

Some "outside the box" thinking is needed here.  In the meantime, I am getting a crash course on reading about long distance caretaking.  Thank heavens it isn't taking all of our time and that right now we have enough energy to do this.  But once my mother in law needs more physical care, that may change.  It is hard to do it from 150 miles away but it could have been 1500 miles.  And, we are both in the same state.  That makes a difference, too.

The other thing I am most thankful for is that my mil still has her mental facilities.  Very very thankful.

Not too many caretaker blogs.  The reason is obvious....caretakers don't have the time to educate others following in their footprints.

Putting bil into the mix doesn't make it easier but it could be a whole lot worse.

Starting to Think about Senior Housing

We are going to have a couple of busy next few days.   My brother in law and his wife had a financial talk with my mother in law.  She tried to muddy the waters but she did allow them to look at some statements. She is-for various reasons spending - a lot.  Independence doesn't come cheaply , especially when you are trying to do it without government aid.

As we already know, Bil does help in limited ways - taking out trash, even helping her with her purse and groceries, and now getting into the car.

They came to the conclusion that we are going to have to investigate senior living up here (upstate NY rather than nearer NYC where she is), and get her to move up here, where the cost of living is cheaper.  She keeps falling and she needs an apartment on a single level (she lives in a split level now and has to go up and down stairs to do anything, even go to the bathroom).  If she can sell her home and pay off the reverse mortgage she will be left with...something.  If she waits she will be left with nothing. 

So we are going to be doing a little research.   What they found indicates she really is going to run out of money if she stays down there.  We don't know if what she needs, or will accept, exists here but it is time to learn.  Time to tread the trail so many others have tread before us.

I don't know if any independent living place here will allow Bil to live with her (he is in his 50's) but that will be the #1 question.  If she waits much longer and falls again, she won't qualify for any type of independent living.

Long Distance Gardening

Every year, we visit my mother in law and Bil either on the Mothers Day weekend or the Memorial Day weekend.

We already put in Mom's air conditioners on our last visit (early heat wave) so this visit should include some planting, and hopefully a BBQ.

Every year maintaining flower beds (i.e. watering) becomes harder and harder for my mother in law, so this year we may end up putting in some perennials and calling it quits to the annual flowers.

We see this even in our own lives as we are transitioning to more permanent plantings where we used to plant flowers....and, we don't really start anything from seed any more.

The concern we have is in her being able to afford lawn care.  She can't mow the lawn herself and can't maintain 1/4 acre of property without expensive paid  help.  I don't know if we ever could have helped Bil learn to do any of this, but in any event he has never helped any with upkeep of her property.

I had tried a couple of years ago to get some low cost help for her without success.  This year we may have to pursue this more aggressively.

As I've stated before, this will be an interesting Memorial Day visit.

Another Visit

My brother in law and his wife are heading for my mother in law's house tonight.  They won't be down there for long but we will see what they can find out.

In the meantime, I am doing some research to hope to organize myself.  We are 150 miles away so I guess what we are doing is going to qualify as "long distance caretaking".  Our opportunities to visit are limited, so we need to be able to do as much as possible in each visit.

We need to identify where my mother in law wants help and where she will resist.

And the three neurotypical siblings of Bil, need to "get on the same page" so we don't work against each other.

And then....well first, let's see what happens this weekend.  And then, we go down the end of the month.

The Saga of the Cell Phone

We knew my mother in law had a cell phone.  We knew her only daughter also had a phone on the same account, on a family plan.

We had no idea she was paying over $135. a month for these two phones, until we visited a couple of weeks ago.

When we came, we saw an "overnight mail" box from AT&T.  My mother in law explained her two year contract was renewing and AT&T told her she was "eligible for an upgrade".  The phone store she had gotten her last phone from had gone out of business.  The "helpful customer service rep" she called told her she could handle the "upgrade", said they would overnight a phone to her (which they did).

Well, just before we were supposed to leave, the rest of the story came out.  Just like a person visiting a doctor who leaves the real problem for just as he is leaving, so did my mother in law hit us with the "rest of the story" as she brought out her bill.  The $135. bill.  And, oh by the way, announced "she was running out of money."  How she had told "the helpful rep, who was so nice to me" that she couldn't afford the plan, and the rep took "$100 off her first bill."

Did she have her renewal letter anymore?  My husband wanted to see it.  Well no, she had thrown it out.

I got on the phone with AT&T.  We use TracFone so aren't familiar with cell phone plans but I knew there were usually very high cancellation fees.  Still it was worth a shot to call, in case AT&T had Sunday customer service.

They had and I listened to a voicemail menu, choosing a department for cancelling service.  I figured that rep would have authority to do something to lower her bill.  If we couldn't, we would cancel.

The rep I got on the phone said because they had sent a phone out to my mother in law, well, the 2 year plan was renewed and it would be $175. to cancel.  The rep offered some options, including a prepaid phone.  They could keep their phones but not the numbers.  While I was on hold I recommended she take the cancellation and run-it would be less than 2 months of bills.  Both her and my sister in law balked.  My sister in law wanted to keep her number.

I asked my mother in law how much she used the phone-only for emergencies, she replied.  So back to the rep.  After a very long conversation the rep agreed they both were using the phones for about 20-25 minutes a month and then after even more being put on hold agreed to rewrite the plan to a 50 minute a month plan, for a lot less money.  However, she couldn't tell me exactly how much "because each state has different fees".  True, but I think that was bogus, too.

Wonderful how cell phone companies (among others) take advantage of seniors.  I wonder where in the fine print it announced that sending out the new phone (even without activating it) meant the new contract started.

While I was on hold another time (this rep kept "running back to her manager", which I think was bogus-but whatever) my mother in law puts her oil bill in front of me and asks me to look at that!

Well, I won't go into the sad and sorry details but the cell phone story isn't over.  And, it still isn't activated.

And, there is still the oil bill.  That will have to wait for our next visit.

We have to get a handle on this, and soon.  She has to open up to us instead of springing last minute surprises.  But we are now forewarned, and prepared for our next visit later this month.  Will she allow us to help her?  Or will she keep sliding into I don't know what and expect us to bail her out when it is too late.

I hope she will allow us to help her.

The Rough Days Ahead

My mother in law is having more medical tests tomorrow to try to scope out why she is having mobility problems, from her latest fall.

Bil....well, how can you get him to realize his mother is no longer a well oiled machine that exists to serve his needs?  Harsh?  I think he sees her in that way.  He knows she goes to the hospital to get a biopsy (a week ago) and all he cares about is that he gets to go out to lunch.

Another time recently she was very tired and in a lot of obvious (to us) pain and Bil wanted someone to take him out for ice cream.  My husband told him "no". (we were very tired also).  He has to know that sometimes the answer is "no."


And now, to top it off, it is time for the elephant in the room to trumpet. I fear that she is running out of money (from a couple of comments she made right before we left on our last visit.)  That's something she's never wanted to talk about, so I fear if she has suddenly mentioned it, it's worse than we think.

Housekeeper...snow removal...lawncare...none of that is cheap where she lives.

We have to make some effort to convince her her family should review some of her finances (meaning my husband and his two non-disabled siblings.)  It isn't a matter of her pride.  If she truly values the future of her disabled son she has to allow us to see her expenses, and figure out what can be done.  (I am going to try to write more on this in my next post-if I remember).

It is going to be an unpleasant process to try to convince her that this has to be done.  She may end up as a cautionery tale of what happens when a spouse (hers) dies without adequate life insurance.  Plus, while she called some of us cheap, we were watching budgets...something she perhaps should have been doing more of.  She is a naturally generous person but you just can't be as generous on a widow's pension.

But finger pointing won't solve anything.  I just hope she will open up to us so we can see what her financial situation is.  And, in so doing, how we can safeguard Bil's future.

Fighting Prader-Willi Syndrome

This worthy fundraiser next Saturday spotlights what can happen when a special needs child is born into your life.

Rachel Johnson is a high school math teacher who taught (I believe she still teaches there) there when my son was in high school-although he never had her.  Three years ago she had her first child, a daughter.  From the first (even before she gave birth) she knew something was wrong but the doctors didn't seem to think so (at first).  Last year, her daughter Ellie, now 3, was diagnosed with Prader-Willi Syndrome.

You may have heard of it from listening to Extreme Makeover or (years ago, as I recall) 60 Minutes.

Now Rachel Johnson is a mother of a special needs child, and fundraises to fight this disorder. 

Among other challenges, at some point a "hunger switch" will be turned on in Ellie, and she will suffer from insatiable hunger for the rest of her life (along with a long list of other challenges).

Can you imagine the energy and strength of character this mother is showing?  Only another "special needs Mom" can.  I have not walked in those particular shoes and my heart goes out to her and her family.

Happy mother's day, Rachel Johnson.

Happy Mothers Day to All Mothers of Children with Disabilities

No matter what the disability, no matter the age of your child, all mothers of children with disabilities are the unsung heroines of the world.  No one can know what it is like until events propel you into that category.  (In my next post, I'll explain a little further).  They don't ask for it, but they love their children even if the world doesn't, and fight like tigers for their children when necessary.

My mother in law gave birth to "Bil" in a time when mothers were blamed for their childrens' autism, and I can not imagine how much heartbreak that caused her.

Watching my mother in law, the mother of "Bil" that I write about, age, I have a lot of mixed emotions.  She wants so much to be independent, but her body is failing her.  (Praise the Lord, her mind is not.)  Bil will one day have to face her not being in her life anymore.

But for now....Happy Mother's Day, Mother-In-Law.  We couldn't be with you today due to distance and the trip we made last week, but we are thinking of you fondly.

Bil and the Oven

This past Friday, we visited my mother in law's.  She had been unsuccessful in getting Bil to go to a family wedding because he didn't know many people there.  So when we got there she had already left for the wedding.

She had misunderstood what time we were supposed to arrive and had told Bil we'd be there at 5 - when what we had told her was "between 5 and 6".  A very hungry Bil greeted us-although I was surprised that he was less anxious than I would have expected.

We tried to call but he didn't answer the phone.  My husband left a message.  He didn't try to retrieve it.  Not too many people call that house with our area code.  We had tried to teach him it was OK to answer phones where the caller ID showed our home area code (which our cell phone, of course, would have generated.)

Mom had left directions for us to cook some fish in the oven and heat up some vegetable leftovers.  Problem was - we had nothing to eat for ourselves-we had been planning to stop at a local supermarket to get a ready made meal.

It was a good thing we went to the house first.

We offered to get Bil his own meal and he refused.  So my husband decided we would dash out during the 1/2 hour it would take the frozen breaded fish to cook.  "You can take the fish out of the oven if the timer rings, Bil" he said to his brother.

"Um" I said.  "Do you think Bil knows how to take hot food out of the oven?"

OK, that wasn't going to work.  I had visions of Bil reaching in without even a potholder, and our family would never speak to us again.  Time for Plan B.

All turned out well though.  Bil got his meal, we got ours - and a new appreciation for the skills Bil still has to learn.

Aging and Mobility Issues Part 1 of Perhaps Many

We visited Bil and my mother in law this weekend.  Several things are apparent.

1.  She is losing her mobility to the extent that I think she is going to need a lot more help than she is getting.  She can't afford for the (private) help she is using anymore:   a weekly housekeeper, someone to mow the lawn, and snow removal in the winter, that kind of thing, which she was paying out of something seniors use commonly.

2.  Due to a recent fall, it is very painful for her to get in and out of her car.  For example, she has had a friend taking her (we just found out) shopping, to doctor's appointments, and so forth.  But, this friend lives part of the year out of state (not quite a snowbird, but you can sort of call it that.)  So what happens when she doesn't have someone to drive her?

She can still drive - this is a physical problem getting in and out of the car.

We live 150 miles away, so one of us taking her would be a problem.

We offered to do her shopping while we were down there but she said this friend had already taken her Thursday.

3.  She mentioned several times this weekend about money problems.  Not specific but just before we were supposed to leave she mentions her cell phone bill, then shows her our heating bill.  We stayed longer.   I called her cell phone provider (probably should be a post in itself) to try to get her onto another plan.

4.  Through all this, of course, Bil is clueless.  Not that I expected anything more, frankly.  He can only absorb what he can absorb.  But for example, my mother in law has an appointment for a medical procedure Tuesday morning.  This friend is driving her to the hospital.  But then...well, Bil and my mother in law have lunch every Tuesday.  So of course she is expected to have lunch with him Tuesday.

She is going to have to say no to him more.  But how do you make a person with autism understand his mother isn't some kind of automatic care provider machine?

More later.