Wednesday, April 22, 2015

where are we going, and what are we going to do when we get there?

We had a few nice and calm days here. Some rainy ones. Not a problem.

After we get into bed, Wheelie always starts to "talk".
Or tries to.
Usually it's about the movie he just saw, or he has questions about actors, and wants me to look up information on my phone.

Handy thing, that.

After about ten minutes his Zolpidem and Flexeril  kicks in and his "talking" becomes "slurring" then just "mumbling sounds" he drifts off to sleep.

 Then he becomes active again with his hands and arms. Trying to grab onto the trapeze, trying to grab something in the air. Sometimes he "sees" something on the ceiling, like a line or a fault, or the trapeze hangs off kilter, drives him nuts it seems. I have tried to find out what he wants, but it's just like sleepwalking, doesn't mean anything. Eventually he conks out after that. And I take a deep breath and watch TV until I'm sure he's down.

The other night, as he was still somewhat comprehensive, he asked me (and I have to hang over him and repeat every word he tries to say): "What will you do after I'm gone?"

It made me cry and we just hung onto each other for a while.
Told him not to worry, I've got things under control
"You're a tough lady" he says, and falls asleep.

At times like that I wonder what's really going on in his head. He doesn't want me to worry about him, but he obviously worries about me.

I've noticed he is having more problems locking the brakes on his chair now.

Eating less, drinking less. I'm not going to push it.

I am kind of tired these last few days.


Sunday, April 12, 2015


According to


a downward slope; declivity.
a downward movement, as of prices or population; diminution:
a decline in the stock market.
a failing or gradual loss, as in strength, character, power, or value; deterioration:
the decline of the Roman Empire.
a gradual deterioration of the physical powers, as in later life or in disease:
After his seventieth birthday he went into a decline.
progress downward or toward the close, as of the sun or the day.
the later years or last part:
He became an editor in the decline of his life.
Anyway you look at it, it means...going down down down....
For the past 20+ years Wheelie's condition has been declining.

I remember vividly the day someone from Quickie wheelchairs came to the house to measure him for his first chair. It was a green one. 
He was still ambulatory, but needed a chair for 'once in a while'
This was before we moved back to California. 

Once there I remember the day and the exact spot when the next big step in decline happened.
He was still able to walk with a big stick, holding on to something, like me. 
We came back from a trip to the grocery store. We lived in an apartment.
About four yards from the front door he stopped, and exclaimed: I don't want to walk anymore!

He meant: never.

He has been using his chair ever since. This was about 14 years ago.

Little by little, sometimes quite unnoticed, he would decline. 
His speech got slurry. His legs started to spasm at night.
Sometimes he didn't make it to the bathroom on time.
Which happened several times, and not in the most easy spots. More like in the middle of  the mall.

When the time came where I had to help him go to the bathroom.

When the time came when we had to buy a king size bed, so I could sleep waaaayyyy over one one side, so I wouldn't get clobbered by a spastic fist or elbow.

When we moved back to Georgia and were able to have a house built to our specifications, like a roll in shower, no thresholds, no doorknobs (but handles)
Wider doors, special carpeting.
Declined when he could no longer hold regular utensils, so I bought him some chunky OXO handled ones.
Declined when he stopped talking on the phone. 
Declined when he could no longer put a CD in the CD player. And just stopped listening to music altogether.

The next big decline point was when he got sick with a nasty cold, bronchitis, and qualified for Hospice care.
His condition being that he would not recuperate. "Failure to thrive"

This meant sleeping in a hospital bed, with a trapeze. It meant getting rid of the king size bed and getting a smaller one for myself.

Being on Hospice was a Godsend. Not only is it free, but I was able to get some real help for ME.
It was a huge relief to have someone come 5 mornings a week to get Wheelie up, get him a bath or a shower, get him dressed. We had a caseworker who we adored. The company even organized a private concert at Shorter College in Rome.

 He was thrilled. I mean, look at that face. 

So when we moved to our new home, after our bankruptcy and foreclosure of our house, he was frustrated that he couldn't lift a finger to help. No matter how often I tried to assure him I could handle it.

In the last year the physical decline has speeded up a tad. 
First the whole damn thing  with the catheter. 
The not playing solitaire on the computer anymore
The not wanting any sweets.
The loss of appetite
The loss of his voice. 

And very recently, some vague complaints about pains. His ear, his knees, his tummy, but still refusing to take anything for it.
We got as far as using Aspercream on his knees.
He was finally convinced to take Flexeril for his legs at night. 
Since the surgery for his Supra pubic catheter, he has been having problems with his BMs. 
As his muscles are atrophying, you find more and more muscles that stop working. He knows he has to GO but can't. Guess the muscles that make you GO, WON'T.
So we up the Miralex, the Senna, the Phillips Milk of Magnesia. The suppositories.
However, only the enemas will do the trick.
He is losing weight. He doesn't eat much anymore, nothing seems to taste good to him.

The skin on his butt now needs special hydrocolloid patches to stop more sores from developing and getting worse.

Its getting more difficult to move him around, on and off the potty, in and out of bed. 
Thank God he takes naps now, usually two hours or so. 
He did finally ate the head off his Easter Bunny though, but that's it.

I have been feeding him like a child, since he can't hold a fork or spoon, and if he did, he would punch the food he managed to keep on his fork right into his eye, or nose.
No problem, 

The one thing he is unwilling
to give up however

you guessed it!

The TV remote control

It takes so long for him to push the correct buttons, and sometimes the whole thing just flies out of his hands. But good ole stubborn Dave ain't giving up. No sirreeee.
Of course he is one of those dudes who mutes the commercials, which means MORE futzing around.
And throughout all this.
Never a complaint
He doesn't smile much, even AFV seems to not tickle his funny bone anymore.
But he is patient. 
Never one to upset the applecart.
This is what it means when you say: for better or worse, in sickness and in health....
Love that man!!!

Wednesday, April 8, 2015

Drywall, pool noodles and duct tape

 A few months ago I managed to still hoist Wheelie up, him holding on the bars, my head against his back, so I could pull his pants down before I smacked him on the commode. Once in a while, his knee would give out, and the initial small indentation in the wall it grew into  a big hole. Not gonna have it fixed, they can do that when we leave.
 Because his weight loss, his customized chair is becoming too wide, and he kept on falling to the side. Of course we could get a new chair, but he doesn't want to spend the money, so we got handy with a pool noodle and duct tape. Covered it with
 another piece of sheepskin, and...voila!

This is face of Machado Joseph Disease.
 A stoic quiet man, slowly shrinking away.
There is no soccer on TV today so he opted to go to bed instead.
It is going on 16+ years that he started using the chair full time.
For a guy who couldn't sit still for a second, who always had to go DO something, mow the lawn, work in the yard, build shelving for the collections of CDs, Videos and LPs, he adapted amazingly well to his circumstances. Never complains, no demands. Doesn't want anyone to fuss over him.

We have been married for almost 34 years now and it has been a roller coaster at times. But he hung on, allowed me to do my thing, and now its my turn.
My turn to be the patient one, and the caregiver. It really isn't a hard job. Oh I have my moments, but we are making it work.

I am grateful for the beautiful weather today, everything turning green. The cars turning yellow from the pollen.
Time to get my hummingbird feeder up again.


Tuesday, April 7, 2015

So much has happened

It's April, 2015.
It has been over a year since I looked at this blog.
Time is racing by. You wake up on Monday, and when you blink it's Friday.
It's mindboggling.

We have been in our new home over a year now. We like it. Although we don't go out much, and we don't go to any of the events they organize here, it feels like home. The neighbors are wonderful. They all like their privacy, but they are always have a sweet word when I meet them in the hall or in the elevator.

It's just a very safe feeling. To know we are in a place where we don't have to worry about maintenance, where the newspaper is delivered at our door every morning. Where the congierges are all terrific people, who call when the pharmacist delivers David's meds, or when the mailman delivers a package. Where you can go downstairs for dinner if you don't feel like cooking.

We have a new Hospice for David. A smaller company, local, although our CNA has to drive a ways to get here. But everyone is helpful. She comes every weekday morning to get him in the shower, or on uneven days give him a bed bath. On the weekends it's my job.

The last year, David's condition has spiraled down. At the end of the summer, it didn't look like he was going to make it to Christmas. He stopped eating, started getting sores on his butt from sitting, came down with a few colds, a few UTIs.
But he perked up again. Started eating more, and the crisis seemed to have passed.

He has lost much weight. His shorts are now so big they fall off his hips when he is upright.
His shoulders and hips and ribs and those long legs are all so boney. I can easily pick him up now so I am guessing he weighs around 120 lbs.
Eating is not something he likes much anymore. He eats about half of what he used to. Sometimes he doesn't have much of an appetite, and of course I am not going to force him to eat. Even his chocolate Easter bunny is still all wrapped up.

A few months ago, his nurse needed to replace his catheter. She could not get it in. Started bleeding. Something was in the way.
Off to the ER. where they rinsed him out and put in a new catheter. The bleeding went on for three weeks. His bottom was black and blue. Very scary looking. But the docs who saw him didn't seem to be alarmed, so we waited "it" out. It took a second trip to the ER when the bleeding was just ridiculously heavy.

We decided to go off the Hospice grid and go to a doctor in our insurance network. Which was frustrating, as I wasn't sure how this was going to go. But the insurance company covered everything except for the few ambulance bills.
The new urologist the insurance company gave us (HMO) was up in Blue Ridge. He also had an office in Atlanta, but I wasn't about to take him on those crazy freeways where accidents hold up the traffic for hours daily.

Blue Ridge is 75 miles north of us. It's a nice drive, no traffic, beautiful scenery.
I decided to take him in the Honda, as an ambulance would have cost thousands of $$$ and the insurance company would not help with that. So up we went.
The urologist took a look and told us that his prostate was enlarged, and that there was a possibility that the cancer was back as well. He suggested the attaching of a Supra pubic catheter. A small hole through the tummy, straight into the bladder.
It took tree more trips to get all that done, once for the pre-op and once for the actually procedure, and once more for follow up.
They wanted to see him a few more times (this thing has to be replaced every 30 days) but David didn't want to go anymore. The drive just wore him out.
The girls here can do it just as well. Everything healed fine, we don't see a problem.

In the meantime his PSA came back elevated, which meant probably more prostate cancer.
The doc ordered a neuclear (?) bone scan and put him on some anti cancer meds.
But what's the use. Why go through all that hassle when you know your life is coming to an end anyway.
So no bone scan, dumped the meds.

The past months his speech went from bad to worse to NO speech. It's almost like his tongue was cut out. He can't form the words anymore. So we try to communicate by just words, not sentences.
It's frustrating for him, so he gave up talking. It's frustrating for me because I simply don't understand him, and I don't want him to think I am ignoring him.
He sleeps on a special air mattress that undulates with his body. He takes sleeping meds as well as muscle relaxer, otherwise neither one of us gets any sleep. He is unable to turn himself over on his side. And sometimes he gets a couching fit where I have to suction out the phlegm.
No big deal.
But for a while there I was up 6 - 8 times a night.

In the meantime I roll with the punches. It really is not hard to take care of him, as he is not demanding, or in much pain.
We have our routine.
I get up, have my coffee and bagel and read the paper. the CNA comes and gets him up. He has his breakfast, then checks the TV schedule for soccer games.
We finally convinced him to take naps in bed, so he can get off his butt and avoid damaging his tender skin even more.
I take quick trips to the store, sometimes a volunteer comes and keeps him company when I want to take a few hours for myself.
But mostly I have adjusted my pace with David's pace.

This seems to be taking a long time. People wonder how I DO it. I have no help from family. Hospice is giving as much help as we want or need. I should not complain.

But...I was told that I had to look forward and prepare myself for 'after'
When David is gone I will take a huge plunge in income. So I won't be able to stay here.
I have checked out a few apartment possibilities, put myself on waiting lists, and hope for the best.
Trying very hard not to worry him, making him think everything is hunkie dorie.

I never did tell him I ran the Honda into a big ass truck, bending my bumper and hood.
Didn't seem like a big deal. Until I took it to a car service place for a tune up months later, and got some surprised faces when they opened the hood and wondered how the heck I could drive with the locking device pushed through the radiator and the AC thing.


Mysteriously, Capitol 1 offered me a credit card with a line of credit of $3000

So soon after our bankruptcy, it was really amazing! And also a sign someone or something is looking after me. Higher powers at work.
Thank you!

So now this old 2002 car can go a little longer, phew.

And with this I will end today.