How I got into “this mess”(his words)

June 23, 2012...He is groggy this morning, looking like he could fall back to sleep at the table. He is feeding himself his banana, but needing help with the oatmeal. 

Between spoons of oatmeal he asked me" how did I get into this mess”, spreading his hands over the dining room table.  I was not sure what he meant, still not sure I do.  I asked him to explain.  He said about the house, and all the hassle, was it all worth it.  He did not say specifically his condition. He asked if I own the house. I told him yes.  So I am not sure he knows who I am or where he is.   He finished his oatmeal, and his eggs and bun and juice. He took to his woodworking magazines and seemed absorbed so I went to the computer.

He is still subdued, drowsy. Maybe he will sleep at the table for awhile.  He does that sometimes for a few minutes, sometimes for hours. I have been sitting in my office  for a while now and he has not called me. So he is probably sleeping. I will check on him in a few minutes.  

I have mixed feelings when he sleeps.  I get some “free” time but I cannot go anywhere. I cannot do anything that will disturb his sleep. I can’t get involved in something that requires a commitment of my time and attention because if he wakes and calls me I must drop what I am doing.    

It's time to check on him and maybe go see if there is any mail.  It's a beautiful day, not too hot or humid.  Maybe we'll go grocery shopping later.

Getting Out of Bed is More Difficult

My helpers are here Monday through Friday, so Saturday and Sunday I am on my own.

This being Saturday, I had no help to get husband out of bed.  He wanted to get out of be right away, not waiting for his pills to kick in. The last few days I have needed help to get him up and into his wheelchair. This morning I am on my own.  

This morning he seemed strong enough to help himself a little.  I use his ability to grasp and hold his assisting bars to determine how much strength he has. I got him sitting on the edge of the bed holding onto his support bars.  From this position, on days when he is able, I shift his body sideways onto his wheelchair and  he uses his legs to raise  himself to clear the side arm of the wheelchair. I tried to get him to his chair like I normally do when he has some strength to stand.  I got his tail bone to the chair with him still hanging on to his bars.  I could not get him to stand nor could I leave him alone at the front of the chair while I went around back to try t pull him in. So I tried to push with my knees against his, but he was not able to hold himself up any longer and started to slide to the floor.  I told him to let himself down easy as I pulled the wheelchair out and away from him.  When his tail was on the floor I pulled the chair out the rest of the way and lowered his head to the floor onto a pillow.  

Fortunately I have had to get him off the floor on a few occasions so I knew how to use the Hoyer lift ( a mechanical lifting device) to get him up. I got the sling under him and jacked him up. I jacked him high enough to get his wheelchair under him and lowered him into the chair. We went the dining room table for breakfast.  His pills kicked in about 30 minutes after he was into his wheelchair.  Some days it can take an hour or more for the pills to start working. And sometimes they don’t seem to work at all.   He has been taking these same pills for 14 years. We were told in the beginning that the pills will lose their effectiveness after about 8 years.  So I guess we’re lucky they still work for him.  When they work.

corner filed off so Hoyer can get in

I have been wondering how soon I would be needing the Hoyer to get him out of bed.  I guess it’s pretty soon. I have been using the Hoyer to put him to bed for about a year. And the last 2 weeks I am using it to get him onto the toilet during the day then back into a wheelchair for the remaining hours until bed. Maneuvering in our tight bathroom is the hardest part.  I recently sanded off the corner of the sink cabinet to allow the wheels of the Hoyer to get in alongside the toilet. It helps but it’s still tight. 

He’s reading now. I have the air conditioner on. The cats are running around because it is cool enough to be active. (when it’s too warm they sleep)  I hope he doesn’t decide to go to the shop to do wood working.  Although I might be a good change for me to work at something other than sewing or getting votes for the grant.

Move A Patient in Bed - How does the spouse sleep?

This may seem like a weird story but it’s true.  My husband with his Parkinson’s disease is not able to turn or move himself in bed.  (This lead to the creation of the Bed Sled).  But that’s another story. 

First I need to explain that we sleep together in a queen size bed. In the beginning of his diagnosis he was not able to settle to sleep unless I was cradling him.  After his drug dosages were worked out, his need for my touch subsided somewhat. But not completely. 

He will still during the night reach out to make sure I am in bed, that I have not left him alone.  It’s hard to sleep with this “touching” disturbance.   It’s nice to be needed but I need my sleep.   For the past couple years when he rolls in bed, because he does not have control of his arms or legs movement I was often times getting kicked or punched while trying to sleep. I found myself moving away from him and closer to the edge of the bed, sometimes hanging on “with my toenails”. 

When he would call during the night to roll him, I got out of bed, went around to his side and took hold of the Bed Sled pulling and rolling him in the direction he wanted to go. I would often not be able to fall back to sleep for a considerable time, if at all.

One night I tried laying a foam mattress on the floor alongside the bed. But with my bad knees it was difficult getting off the floor to answer his calls. So I was back in the bed.  Then I tried putting a clothes hamper up against the bed on my side, so if I rolled I had something to catch me. It helped but was very uncomfortable.

Also our dogs, Tippy and her brother Tobie, slept in the bedroom with us. So whatever I did I had to make sure I would not trip on the dogs when getting to him in the dark.  Now that both dogs are gone, and the cats sleep in the powder room, I can have a clear path on the floor.  So I moved my cedar chest up against my side of the bed, piled some extra bed pillows on top to bring it up level with the bed and am now sleeping on this “bed extension”.  Works pretty good actually.  I am able to sleep without falling out.  And when he wants to roll I don’t have to get out of bed most times.  I reach over and roll him without getting up from bed.  Occasionally I have to get out of bed to perform the roll, but most times not.  It’s not the easiest thing for me to get into bed now, but once I lay down its pretty comfortable.

Now when he rolls it is like a log roll, literally from one side of the bed to the other.  I don’t need to pull him over to make room for me.  I just make sure I get him into bed far enough when he is transferred into bed. So when I roll him towards his side of the bed later during the night he will not roll out. I still find him looking at me to make sure I am still in bed with him, because I am lying just outside his reach (unless he really stretches).  But now I can sleep better.  And to think I considered getting rid of the cedar chest because we don’t keep woolens anymore!

The point of this story is that nothing is stupid if it works!

It’s amazing how much he can change from day to day, even hour to hour.
You can tell markedly, when his medication wears off, even though his condition is such that you would swear it was not working, if that makes any sense. That’s where the worse becomes worser.
These past couple weeks, he has been so very weak. Eating less. Drinking less. Waking during the night wanting cold water.
Mornings are best, after I get him washed up and dressed from bed. I give him his medications before he gets out of bed so they have time to start working before he gets to the table. I can tell pretty well by how much assistance he needs to get out of bed, how the day will go. Lately, he needs a lot of assistance. I sometimes have to call the daytime assistant to help get his wheelchair under him because I can’t let go of him long enough to do it myself. If he is strong enough, I am able to support him myself while I reach for the wheelchair.
Depending on his condition he may need to be fed. On good days he will feed himself. Yesterday started off pretty well, he fed himself at breakfast. Later, he wanted to putty the floor in the sun room. He was too interested, too determined. He tried to do it from the wheelchair which I knew would not work.
I helped him down onto the floor onto foam pad. After the episode of getting him off the floor using the pneumatic lift (see previous post) he was quiet the rest of the afternoon. At dinner he could not stop yawning and soon fell asleep half way though his meal. This has happened before but usually he can hold out until later in the meal. He woke about an hour later and we watched TV until it was time for me to feed the kittens about 8 pm. (See other blog story)
We went back to feed/watch the kittens and he indicated he wanted to go to bed. I got the kittens back into “their room”, my bathroom off the bedroom, and got him into bed. Not without difficulty. He let me use the pneumatic lift to get him off the floor, but won’t let me to use it to get him into bed. My back tells the story more times than I can count.
He fell asleep immediately. Slept soundly until 3 am when he called out for cold water. Then his legs starting jumping and he wanted medication. I don’t normally give him meds at this hour, but I did and adjusted his dose at breakfast. Afterwards, he was restless in bed, wanted to get up. I got annoyed telling him its only 3 am. He got angry and said he can’t help it (which made me feel guilty for being annoyed).
I got him up and dressed not knowing how long he would be up. We went to the table. He had a sweet roll and tea. Considering he ate only ½ of his dinner, this did not surprise me. What was unusual was his getting up at this hour. He was back to bed by 4:30 am. Years ago when his disease was diagnosed and we were trying to get his medications figured out, this was an every night event. I hope this is not an indication that those late night wake up calls are coming back.