Friday, May 18, 2018

A World Without Books #FridayReflections

“I have always imagined that paradise will be some kind of library.” — Jorge Luis Borges

I have loved books since I was a little girl.  I loved how they felt.  I loved how they smelled.  I loved going to the small branch public library that was located in the housing project where I grew up and taking books out.

Soon after I started school, that branch library closed, and in its place we started to get a bookmobile. It would park at my housing project each Thursday, except during the summer.  I dreamed of working in a bookmobile (a mobile library) when I grew up.

There was another branch library in walking distance, about a mile away.  They would close each June (and reopen in September) but they would allow users to take out an unlimited number of books right before they closed.  I filled my room with summer reading material.

So, when my husband and I became responsible for my autistic brother in law, one of the very first things we did for him was getting him a library card.  Strangely, he won't take the books out.  He wants to read in the library only.  He does have his favorites - science and horror.

In his own way, he loves books, too.  And the library.

In books, we both find our own types of paradise.

If heaven does not have libraries, it will not be heaven.

And, on this day when students and a teacher in a high school art classroom lost their lives in Santa Fe, Texas, all I can do is share a picture of a quilt displayed at our local library during the summer of 2014.  May they rest in peace.

Join Corinne at Everyday GyaanShalini/Kohl Eyed Me at #FridayReflections and share your love of books!

Friday, May 11, 2018

The Last Spring

I fear this will be my mother in law's last spring.

Next week, we will have to tell my brother in law, who is autistic, that his mother will not be coming home from her recent hospitalizations and stints in rehab.  Instead, she is going to be admitted into skilled nursing.

Three Emergency Department visits in five weeks.  A good reason why I have not been posting.

Today, she couldn't even remember that she had rehab. All she could remember is that she was exhausted because "they kept taking me out of bed".

I don't know how my brother in law will react, but I have a feeling he's already figured it out in his mind.  Us telling him will only make it official.

We've been told we have to be direct with him - not to use any euphemisms, as they would only confuse him.

Hoping I will have enough energy to report how the "big reveal" went.

Watching my mother in law fade away from congestive heart failure and early onset dementia has been an emotional experience.  I never dreamed how hard it would be. My parents, and my one grandparent who lived into my adult years, all died suddenly.

I've had friends die but nothing could have prepared me for this.

I just hope my brother in law will cope with it OK, because I just don't know how to support him, and I barely have enough strength to support myself.

Friday, April 20, 2018

The Pay Cut

"Bil" gets a service called Community Hab.  A community hab provider takes Bil out into the community to provide him opportunities for socialization.  They work on agreed on skills, such as money management.

A particular woman, let's call her "A", has worked with Bil for around two years now.

This woman has opened up Bil's world.  She hobbled around on a bad foot for months taking Bil places.  She's been dependable, and a support to Bil at certain stressful times in the past few months.

It's not an easy job.  I work with someone who works part time as a community hab provider.  She's had situations where her client has been tormented, for example, at the local mall, by young people calling her client names.  I don't know if this has happened to "A" or "Bil", but these providers are trained in how to react to such circumstances.  Or, if their client has a medical emergency while working with them.

Recently, "A" was rewarded for her hard work.

"A" received a $1.50 an hour pay cut for a job well done.

Yes, you read right.  A pay cut was her reward.

Well, the agency that employs her has lost funding.  They have to cut costs.  These people are not paid well as it is.

Yes, this is how we reward those who work with our most vulnerable populations.

Saturday, April 14, 2018

Sickness Strikes

My mother in law spent part of this week in the hospital, recovering from pneumonia.  And "Bil" ended up with bronchitis, which came close, really close, to developing into pneumonia, too.  Yesterday, she was moved to rehab in a facility that includes assisted living and skilled nursing.

The admitting doctor described her as "frail".

Today, we visited her with "Bil". "Bil" spent about 30 seconds interacting with her, after which his entire attention was trained on the room TV.  It was enough for him to see her.  Interaction wasn't necessary.

Family members are starting to wonder about her dementia.  The pneumonia hospitalization was a good time to tell them (since a couple of them were thinking about traveling here to see her, a journey of over 100 miles).  One asked me, point blank, if she had dementia.  Another said "I had suspected".

Yesterday, when my husband asked her what clothes she wanted him to bring to the facility, she just looked at him blankly. 

This morning, my mother in law didn't remember what she had for dinner last night (we wanted to know because she had trouble cutting her food for lunch - fish).  She didn't know if anyone had called her (there are a lot of people who care about her, and I had informed various family and friends of where she was and her phone number).

"Bil" wanted to know how long his Mom would be in the facility.  Everything, in his world, needs to have an exact time frame.  But there is no time frame.  He did announce to his Mom how long he thought she would be there.

And then, he asked us to take us to the apartment he once shared with his Mom, to get more clothes to wear.

It's good that he considers the supportive apartment he lives in now as "home", because we don't know if his mother will ever be returning to her home or not.

Sometimes, I wonder if her mental decline is, in some ways, a good thing for her.

And then I feel terrible for feeling that way.

Friday, March 30, 2018

Caregiving Bumps in the Road

It's ironic - now that I have so much to write about, I'm not writing about it anymore.

My autistic brother in law has receded into the background while we try to deal with issues surrounding my elderly mother in law, who is in the early stages of dementia.

Several evenings a week, we ('we' meaning family members in our area) have arranged for an agency to provide a home health aide to make supper for my mother in law, make sure she takes her meds (she can't manage them on her own anymore) and make sure she goes to bed with her oxygen on (on her own, she claims she doesn't need oxyge.  She does).

If a family member visits, she tends not to remember the next day.


We found out one aide wasn't doing her job, after a friend came over to visit and found some interesting things.  That aide lasted three weeks.  The current aide is good, but had car trouble - came one night via taxi (which probably ate up most of her pay for the night) and the next night, wasn't able to come - and the agency couldn't find a replacement.

So we and the friend all pitched in.  My spouse made dinner.  He had already visited his Mom earlier, after doing shopping.  He also did some of her financial affairs.

It never ends...until one day when it will end.

Meanwhile, "Bil" isn't feeling well, and, although he is supposed to come to his Mom's today for a weekend visit, we aren't sure what will happen.  When he left to go to his apartment this past Monday, she couldn't remember, a half hour later, when he was going to return.  She has become unmoored from time.

And, earlier this week, she couldn't remember her son's phone number, a number he has had for 31 years.

Ah, the joys of caregiving.

Saturday, March 24, 2018

Coming Up for Air #NoAtoZChallenge

It has been such a roller coaster ride, these last two months.

My mother in law has developed signs of dementia.  She goes to the doctor one day and forgets the next.  We found out the hard way, when she had not taken her medications in a couple of days.

It was a game changer, especially when a housing opportunity finally opened for Bil. We had to get (with family help) a lot of things together in a brief amount of time, but we all did it.

"Bil", my autistic brother in law, is now living in a supportive apartment about a five minute drive from where my husband and I live.  He lives there four days a week and spends the other three days with his mother. 

Her needs have exceeded what we can all provide and she now has a part time home health care aide.  She will run out of money in less than a year, though, and we don't know what we will do then.

It's all so exciting, I haven't had time to blog, and I will not be participating this year in the Blogging from A to Z challenge.

If you are one of my readers, and you do intend to A2Z, let me know, and I will be visiting your blog from time to time.

That's a promise.

Friday, January 12, 2018

Taking A Break

I've decided to put this blog on hold for a hiatus while I think about the direction I want to take it in.

I had thought about blogging a book based on my experiences with my autistic brother in law, "Bil", but I never got very far with it.

I am facing my mother in law's declining health, and other issues.

She was hospitalized earlier in December with a lung issue and put on oxygen.  We had additional difficulties with her this week.

I have to admit that watching her decline has stirred emotions in me - strong emotions - that I could barely believe I was experiencing.  I had a couple of day that were emotionally rocky for me.

I have a handful of of steady readers, and I am so grateful to them for sticking with me.  Thank you thank you thank you. 

If you have read my blog, thank you so much. I will be back.  I just don't know when. 
Farewell for now.