Update May 2012

This past month has been scary.  Don has been quiet, polite, subdued.  But drooling has been really bad for nearly week.  Swallowing is very difficult.  Choking not an issue because the food does not get that far.

Friday morning he had his normal oatmeal, banana, juice, eggs, and bun. He could not eat his lunch or dinner. Saturday he ate 2 small pancakes and a little juice.  He normally would eat 4 large pancakes, a banana, and juice.   Again he could not eat or drink his lunch.

After lunch that he did not eat, we went shopping to purchase more patches for the tissue box holders.  He sat quietly the whole trip.  He did not want anything to drink.  I’ve been concerned about dehydration and now I was starting to really worry.  In the past two days I don’t think he drank 8 ounces of liquid.  But he was still losing all that fluid in his drool.    I know this has been playing on my nerves and my conscience… was I the cause – neglecting or missing something?

I have been giving him additional Ropinerole or Carbidopa/Levadopa a half hour before dinner hoping it takes effect before I serve the meal and he will be able to eat.  Lately that plan has not been working. Considering his state I decided to give him a larger dose, it could not/would not do any harm.  It took 45 minutes but finally it took hold.  He wriggled and danced in his wheelchair which I know he hates, but it signals the drug is working.  I got him to eat… and boy did he eat!  4 large eggs, sausage, potatoes, 3 pieces of cake, left over pie, soda, juice.  Made up for not eating all day, and part of day before. 

I guess we are back to a larger dose again until he gets maxed out with hallucinations, irritation, demands, confusion.  Might be only a few days, maybe a week and I’ll be cutting him back again.  At least I get a momentary reprieve from worry about dehydration. 

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.

Parkinson's Care - The Disease, The Reality

Parkinson's Disease breaks down communication of the brain to the nerve endings that control movement. There is a more technical description, but that's the gist of it. Untreated Parkinson's can be like total paralysis. Even with Parkinson's care, the patient can have symptoms like freezing in place, or not being able to swallow or speak. Not every Parkinson's patient has the same symptoms. We have been to Parkinson's support groups where each participant had none, some, or little outward symptoms of this disease. My husband was often the only wheelchair patient.

My husband's Parkinson's Disease was diagnosed in 1998. For the first 4-5 years you would not know to look at him that he was anything but fit. Since then, as the disease progresses, his symptoms are moderate to severe, changing from day to day. In late 2006 he developed problems swallowing. He could not swallow water or applesauce and therefore could not swallow his pills. He could not swallow the pills that would allow him to swallow. It was a continuing downward spiral. I started looking at cemetery plots.

He wound up in the hospital for 5 days on intravenous fluids to rehydrate him. Once stabilized, they sent him home with a feeding tube installed because he still could not swallow food or water. His pills were administered through the feeding tube for a few days. Finally some of his muscle control returned and he was able to take his pills again. Soon he was able to swallow liquids and within 2 weeks he was eating solid food again. Not steak mind you, but hamburger or soft meats. His feeding tube was removed eight weeks later.

After that he began taking his Parkinson's care more seriously, taking his medications somewhat on schedule. He was able to get around much better, not walking but able to assist in moving himself. He always had a poor attitude about the disease. Depression was making him miserable. I finally spoke to his doctor about his depression and a low dosage of anti-depressant was prescribed. My husband HATES pills. It was hard enough time to get him to take the previously prescribed medications, how would I get him to take this new, additional pill?

Fortunately, or not, depending on the agenda for that day, husband was staying in bed longer in the AM. I started giving him his first Parkinson's illness medications around 6 am before he got out of bed so that if he slept in, he would not have missed his first dosage of meds. With this system in place I was able to "hide" this new pill with the others and he never found out. Still doesn't know. If he knew what it was for he would not take it. It has made a wonderful difference. He does not speak so often of doing himself in, he's much more pleasant, and he's more tolerant of taking his other pills throughout the rest of the day. He still has depressing days when mobility of any sort is nearly impossible, but we get through it.

He recently coined a new phrase "I have to carry my own casket", used when he does not receive the assistance he expects (and needs) but I am not physically able to offer him. He must participate in transferring himself from the bed to the wheelchair, from the wheelchair to the toilet, or to the stair glide, or to step out the front door to get onto his scooter. He only weighs about 145 lb. but I am not strong enough to lift him. Without his participation he is dead weight. At those times I agree with him, "Yes, you have to carry our own casket because you're too heavy for me to carry it alone. " The strength and patience come from somewhere because we do eventually get him moved.

Please visit my web site www.caregiversaide.com to see my Patent Pending Skid Seat(R)used to help reposition into a wheelchair, my Bed Sled, a reusable bed pad with handles, and related items you may find useful in caring for your loved one. Thank you.