Tuesday, March 26, 2013

Two Steps Forward, One Step Back

Obtaining good care for a loved one with Alzheimer's can sometimes feel like walking through a carnival fun house, with all of the craziness and none of the fun.

A case in point: as Dad's dementia progressed, he started to fall. A lot. His legs were weak, yes, and he had some balance issues, but it was also because his brain was having trouble remembering how to make his body perform the necessary tasks to enable walking. After his worst falls (i.e., the ones that resulted in trips to the emergency room), physical therapy (PT) would kick in and therapists would work with Dad to restore more normal functioning. It always helped. The problem was, just as Dad would start to do really well, the PT would cease.

One of Dad's many injuries
that resulted from a fall.


Because Medicare said that once a condition improved, it would no longer pay for therapy. Preventative or maintenance therapy was not covered. And, of course, once the PT stopped, Dad would slowly lose ground and end up right back where he started.

The kicker here is that no patient with Alzheimer's, or other forms of dementia, will ever improve permanently. By the very nature of their diseases, these patients are on a continual downward slope with no hope of recovery. Thus, Medicare was able to deny them therapy that could significantly improve the quality of their lives.

Dad is mostly wheelchair
dependent now.
Well, now we have some good news. On January 24th of this year, a federal judge approved a settlement that does away with the Medicare Improvement Standard. Patients are no longer required to show improved or reversed health conditions as a result of therapy. Maintenance is now an acceptable standard of care.

This is welcome news, although perhaps a bit late for my father, whose physical health has deteriorated to the point where it's doubtful he can do physical therapy any more. But it should help many others.

The one drawback is that there is a requirement now for occupational, physical, and speech therapists to obtain specialized education in order to be able to evaluate and treat those with cognitive impairment, otherwise the Medicare coverage, once again, won't kick in.

So the question now is: will memory care/dementia facilities step up to provide this training for their employees so that their residents can benefit from this new ruling?

I can only hope, and pray, that they will.

(You can read more about this topic here and here.)

Monday, March 25, 2013

Gone Too Soon

Julia, with her daughter, Pat.
It goes without saying that there aren't a lot of upsides to being on this Alzheimer's walk. But, without a doubt, the residents and their families that have become a part of our lives because of this journey are among them. As comrades-in-arms, we bond quickly and support each other in the trenches.

I've written before about Mary and her daughter, Elaine, both of whom we grew to love. Sadly, Mary is no longer with us, but they are both still in our hearts.

Another mother/daughter duo we've grown to love is Julia and her daughter, Pat. Julia, like my Dad, is a resident in the Memory Care Unit. She's a tiny, delightful lady who doesn't talk much, but oh, her eyes speak volumes! She's especially fond of my sister, Sue, and when Sue is around, Julia's eyes follow her everywhere.

Sis, with Julia.
We learned today that Dad's roommate, George, passed away over the weekend. This is the hardest part of learning to love these new friends. We lose them much, much too soon. And it always hurts. Still, I wouldn't miss having known them, not for anything.

RIP, George, and much love and prayers to your family.

Sunday, March 24, 2013

Good Days, and a Video

Still looks like a Marine, doesn't he.
After many weeks of Dad not doing so well, he finally had a really great day last week. Two of them, in fact. Last Wednesday and Friday when Sis and I visited, Dad was really perky. He ate well, wasn't as sleepy as he has been, communicated pretty well, and was joking around. It was so good to see that spark alive again, even if it's only temporary.

Love seeing this smile.
His appetite has been going downhill lately, but last week he was eating like his old self. On Wednesday, we took him a milkshake and hamburger from McDonald's. He ate both, plus his regular lunch, *and* a package of Tastykakes. On Friday, we took him a cheeseburger and a blizzard from Dairy Queen. He ate both, plus his lunch. It's so good to see him eat! Dad doesn't have many pleasures left in life, and food was always a big thing for him, so it's heartwarming when he's able to enjoy his food. Plus, he's been losing weight, so the more we can get him to eat, the better.

Dad enjoying his burger.
I shot some video of Dad while we visited with him. As you'll see, the ice cream triggers memories about ice cream floats, which were always a favorite with Dad. (We're taking in root beer and ice cream this coming Wednesday and having an ice cream float party in the Memory Care unit for Dad and the other residents.Yum! Dad's not the only one who loves them, lol.) You'll also see, however, that in spite of Dad having good days, the Alzheimer's is never far away. At the end of the video, Dad has great difficulty finding his mouth with the straw in his drink. The same thing happens with eating utensils. His hand-eye coordination is no longer reliable, and he often forgets how to eat and drink. And he can be fine one minute, then forget the next.

Alzheimer's is such a bewildering disease. :(

Some days Dad can walk; some days he
can't. This was a good day.

(Sorry about all the background noise in the video. It was a hectic day in Memory Care.)

Thursday, March 14, 2013

He Remembers

Sis and I visited Dad today. When we arrived, I put my hand on his shoulder and said, "Hi, Dad, it's Cindy." He reached out, took my right hand in his, and lifted it to his lips for a kiss.

He still remembers.

Tuesday, March 12, 2013

Notes from a visit

Dad, lost in his own world. You can see in
this photo how he leans to the left.
In the final stage of Alzheimer's, which is where my father is, our loved ones lose the ability to respond to their environment, to carry on a conversation and, eventually, to control their movements. We are seeing this more and more in Dad. His world is becoming a much smaller place, both physically and mentally, as he turns inward.

The question I so feared last time I saw Dad ("Will he remember me after not seeing me for almost three weeks?") wasn't really answered. When Sis and I visited him on Friday, Dad was lost in his own world for most of our visit. His responses to our attempts at conversation were one or two words at most. He still smiled, still held my hand, but you could tell he wasn't really engaging.

The lateral supports on Dad's chair have
really made a difference in his comfort level.
He's also lost a good bit of weight, even though he seems to still be eating fairly well. (Friday was pizza day and Dad pronounced it "Delicious!") And his whole body is curling inward, as if to conserve energy and effort. Some weeks ago we ordered lateral supports for his wheelchair because he was leaning excessively to his left side, so much so that his head was always at an uncomfortable angle. The supports have worked well to help keep him upright in his chair, with the added bonus that he has somewhere to rest his head now when he naps in the chair. They've worked out really well.

(Caregivers, take note: we found these lateral supports for Dad's wheelchair on our own. Not one professional in Dad's world mentioned to us that they were available, even though we often discussed the problem of his leaning. The same thing happened with the bolsters he now has on his bed to help keep him from rolling out of bed. Do your own homework, and don't rely solely on the "professionals" to guide you. You must be an advocate for your loved one!)

On a happier note, Sis and I have decided to do another doll house to donate. This one will go to the Memory Care unit to be used for fundraising. I'm looking forward to it. Just wish Dad was well enough to help us with this one.

Pizza is still a favorite!

Friday, March 8, 2013

The Awful Power of Alzheimer's

Here is the awful power of Alzheimer's:

I've been sick for the last three weeks or so (first with a really ugly upper respiratory infection, then with a bad back as a result of all the coughing that ensued). Consequently, I have not been able to go visit Dad in all that time. Tomorrow will be the first time. And you know what?

I'm scared.

Alzheimer's makes for such tenuous connections in the brain, and Dad hasn't seen me in a while. Will he remember me? Have I been out of his thoughts for so long that he won't be able to make the connection again? It's a very real possibility at this stage of his illness.

Three weeks of absence against a life time of memories...which will win?  I really don't know.

Such is the power of Alzheimer's that I even have to worry about this. And it really, really sucks.

It's okay if you forget that I love you, Dad. I'll remember for the both of us.