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 few years there were very few visible symptoms. Now, 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. 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 had a poor attitude about the disease from the beginning. 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. I had a hard enough time to get him to take his other 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 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 dwell on thoughts 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 gets depressed when mobility of any sort is nearly impossible, its understandable and 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 weighs about 145 lbs. and 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 comes from somewhere and we do get him moved.
Recently he has had extreme difficulty moving anywhere. We are currently avoiding difficult moves and realigning furniture to accommodate his new bout of rigidity. His lack of flexibility has to be compensated for with flexible surroundings.
Caring for my husband these 12 years has given me a genuine understanding and sympathy for other caregivers and their individual situations. I am always looking for a better, easier way to help him through the day. If he’s happy then we’re both happy.
Call us today to learn more about our Parkinsons Care Facilty: (425) 444-6081!