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Caring for my Quadriplegic Husband

This picture of our family was taken at my mothers birthday party Feb of 1995. And Ken passed away that June 1995

My husband had always been an active and hard worker, a transport truck driver on the highway for the first 5 years of our marrage. He finally realized how much he was missing his children growing up and he quit the road and got jobs arround locally, so that he could be home nights. He was never out of a job but we did move around a few times and finally bought a house in a small town. We had our boys in sports, baseball, hockey, Lacrosse.We also formed a small marching band and had our daughter as one of the majoretes and the boys playing in the band. He was very active in the sports. When the boys got into travel teams we would drive them to the cities and he often was the coach or manager of their teams. He himself got into playing mens softball, and bowling teams, and later horseshoes.

This is the trailer that we had for camping and I had to have a porch lift installed next to the steps to get his wheelchair up to the deck.

In the 70's we started to go camping and after a couple of trailers, and not liking to set up each weekend finally bought a 35ft park model trailer, and had a 22ft florida room added to it. He got into playing horseshoes with the men, and winning trophies at almost every tournament that he went to locally. The various campgrounds would put on tournements. He would be the instigator to get the guys going every morning taking his horseshoes and clangging them, calling them as he past the other trailers to let them know to get moving. He would play turkey euchre with all the guys each weekend. We were on Lake Erie, and a lot of the men had boats and would take him out fishing with them, so he deceided we needed a boat so that both of us could go out fishing. I had been fishing just off of the shore for perch. So he bought us a boat and had to go and buy all of the toys that he would need to go out in the middle of the lake, downriggers, radio, lights etc.(We never did get to take the boat out in the lake) He was installing them one drizzly cold weekend in March and on the sunday he came in complaining of a pain in his back and a fever. I put him to bed with medication and after 2 days and his temp up to 103 1/2, I took him into emergency at the hospital. The doctor after taking all kinds of tests said he had pleurisy and sent us home with medication about 10 oclock. He had a hard time walking back to the car at the hospital parking lot, and again trying to get in the house from the car. Within an hour we realized something was realy wrong when he wasn't able to get from the chesterfield to the chair. He tried to crawl and couldn't do that so I said I was calling the ambulance. They took him back to the same hospital, and called the doctor back in that had seen him earlier. Finally they deceided to send him to London to the University Hospital. I called the family to meet me there, and by the time that I had gotten there, they had taken a CAT scan and had to put him on a respirator. It had progressed that fast. He was in the ICU when I got there (and this was my birthday) with all kinds of tubs going into him. Real scarry.The doctor asked if we wanted them to pull the plug but we could not see that happening. By this time he had lost all functions of his body except his head, but with the tube in his mouth was not able to talk to us but motion to us with his eyes or head. We all camped out in the family room that they have there, while we were allowed to take turns at going in to see him. The doctors would come and converse with us asking questions and giving us updates. The doctor came along on thursday afternoon and asked for permission to go in and operate on his neck, to open it up at the back to see if there was anything giving him pressure there. They wern't able to see anything on the xrays and didn't give him much of a chance to live anyways. 7:30 they took him down and came back and said he had servived the operation. They had found that two of the cords in the spine were black, (meaning dead) and the other one was red red hot. But nothing that was puting pressure on it. They had never had a case in this big hospital like this before and only give him a week to live. The doctors advised us to get his papers in order. They have a great support team there that was always comeing to see if there was anything they could do and was the ones that told us what we had to have done. My daughter-in-law worked for a lawyer firm in London so she had one of them, and his secretary come and get the power of attorney papers signed. I wasn't allowed in while they asked him questions and he would node his head and the secretary was to authorize that he did answer the questions properly.They took his hand and made an X.

This is the boat that we never had a chance to go out on.

We had a conference with all of the doctors on his case and they said there was nothing that they could do that he probably wouldn't last the week. They had read all up on his symptems and came to the conclusion that it was Acute Nectorizing Myelitis with damage to the spinal cord at C2 to C7 caused from Pneumonia and a staff infection. They say that his imune system was down for some reason and he was not able to fight the infection. This was so rare that they had not had a case in the hospital like this. We did have a cat that he liked to wressel with and he would scratch him, but they seamed to rule that one out. I did not see any scratch or cut from working on the boat but I do think that I know why his immune system was down. He had been to the heart doctor on the November before having the test to check his heart. The arterie going to the right side was partly closed, so he figured he needed a treadmill to work out on, like they had at the hospital. He would work out for 3 to 3 !/2 hours each night after work, to try and get his heart stronger and his weight down. I had told him that he was burning up more calories than he had eaten.

He was in the ICU for several months and I had to drive 60 miles to the London Hospital almost everyday, as he didn't want me to leave him there alone. We did have a son that lived in London, so I did stay there on bad driving nights. But he did not want me to leave until 10:00pm. He was able to see the clock. We were only allowed to stay for 10 min an hour but he would get very aggitated when the nurse would come along to tell me to leave. Finally after several arguments with the doctors and nurses, we were able to make arrangements to come in when I wanted to, but had to leave if they got a serious case in that they had to work on. I think the ICU had about 22 beds. They finally moved him over in a corner by the window, when they realized he wasn't going to die right away. I finally talked them into puting the track in his neck, so that he could eventually talk to us, it was very hard trying to talk to him with a "word board" and pointing to the different words to see what he wanted. He would have to node when we pointed at a word. I learned what had to be done to take care of him, and told them that I could do that at home. The doctors tried to talk me out of it but I wouldn't listen. Very stubborn sometimes. They said that in cases like this that the man will turn on his wife and be very mean and swear at them blaming them, but he never did. They said it was very expensive to have the house outfitted for him, and I said I would find a way. I wasn't going to live in the hospital the rest of my life. After I finally got it through to them, and the family helped me research other avenues to take. We found out that there was a Hospital in Pensylvania that was experimenting with his kind of case. After the hospital made some calls, and found out what tests he had to go through to be eligible to go there.I believe it was called a MRI. Well he wasnt qualified. So now they started to make arrangemnts to go to the Parkwood Rehab Hospital across town for when they had an opening. We had tried to get him back to town here so it wouldn't be so far for me to drive, but they refused him as they said they didn't have the respiratory equipment, or tecnitions to take care of him around the clock. The respiratory dep. started to work more with him to try to wean him off of the ventilator so that he would be able to go to Parkwood. They would put him on oxygen for a few min at a time trying to force him to learn to breath on his own. By this time they had moved him to the extended ICU down the hall. They tought me how to turn him over on his side and put pillows behind him to hold him up from rolling, so that he didn't get bed sores. They showed me how to take my fists and push under his rib cage to help him bring up the flem as he wasn't able to cough himself to bring it up. At other times they would use a tub to suction out his lungs when he would get pneumonia again.

Of course he didn't like the hospital food as most don't, so I would bring him in some of his favourit things from home. And our youngest son was a cook in the kitchen and he would bring up different things that weren't on the menue to eat. It didn't take long for him to gain back the weight that he had lost the first couple of months that he was there with that feeding tube in through his nose. He had droped to 145lbs from arround 190.

From the beginning they had been working on his hands and legs so that they wouldn't curl up. Finally in June he was able to move his arm a slight bit, it was from his shoulderblade. Just his hand moved a little bit but it gave us so much hope.I began working his arms more and his hands, hopeing he would eventually be able to feed himself, or scratch his head when needed. But that was not to happen.

Through the summer months I was able to stay at the campground, that was only about half the distance between the house and the hospital, but had no phone there and had to get a cell phone for the car to be able to keep in touch with the hospital. August 23rd he was moved to the 7th floor and they put a smaller track into his neck and started to leave him off of the oxygen for longer periods of time. After a few boughts with pneumonia that set us back he was finally sent to Parkwood on Oct 9th 1991. They removed the oxygen as soon as he got there. He had picked up a infection that was very deadly to the other patients in the same boat, so they moved him to a private room the next day after getting there, to be quarentined. It was very funny to see the kids and grandkids, come to see him and have to gown up and put a mask and gloves on to come into the room to see him, and were told not to touch him. The nurses had to down gowns and leave them in the hall in a hamper. After a few weeks and discusions with the powers to be, and my daughter who was a nurse, we got it through to them that I wasn't picking up this infection and I didn't wear the protective clothing, they let up on the restrictions. The rules in the books were eventually changed. In the meantime we had physio come in and work with him, and then a man that measured him up for a wheelchair. He had gotten a spare wheelchair at the hospital to practice his driving, but at first was only allowed to drive around in his room. He had to use head controls to drive it with. It was very funny the first day that he broke out of his room. He asked me to open the door and he went down the wide hallway and was realy enjoying it. One of the nurses saw him and went running down the hall yelling at him to come back and he was just a laughing at her. I explained to her that he wasn't able to touch anyone so why worry about it.

They had someone from town here to come and look at my house at what I had to do to be able to get him home. I had to have a ramp to get him into the house to start with. The side door was chosen as it had better access and a deck built so that he would be able to sit outside in the summer. The ramp had to be built to be one foot to every inch off of the ground of the deck. The ramp had to be 22 ft. and the drive had to have a little more added on to it to reach the bottom of the ramp. The bathroom had to be changed as he would want a bath and I would have to have room to get the lift under the tub. So i had a new tub put in and a whirlpool one (6 inches off of the floor), so that it could work on his body. We live in a mobile so our rooms are small. I had to have the sink taken out and got a pedistal one that gave me more room. Doors had to be widened and two walls taken out, an extra bedroom went, to make our livingroom larger to accomodate the hospital bed. As we didnt have all of the funds to do all of the remodeling and buying equipment, we were put in the governments hands RRAP I believe it was called but are no longer in service so I understand.

Well thank goodness that he worked for a good co that he was driving for locally for 7 yrs that had a good retirement and Ins benifits. He had been working for me at the ceramic store since my father got sick helping out with the heavy pouring. (We had no benefits there).
The electric wheelchair cost over $12,000.00 and the government covered 75% of that and his ins. covered the other 25%. They would only cover one wheelchair so we had to pay for the manual one ourselves which was about $2,500.00. We had to have an electric bed so that I would have an easier time of moving him in bed. (I would have to lower the head of the bed to pull him back up in the bed when he got down to low). This was another $3,000.00 and the ins would only cover $1,000.00 of it. I had to buy a hydraulic lift to be able to move him from his bed to his wheelchair which was another $2,500.00. ins not coverd this.

I was finally able to bring him home Dec.18th. They shipped him to our local hospital, and as soon as he saw his doctor that day he asked to go home. They sent him home the next day. We were covered by "Home Care" (when someone gets out of the hospital here in Canada). The first few days we had all kinds of teck come in to see that we had everything under controll and gave us instructions on what to do. The nurse would come every week to check on him changing the catheter etc. They had offered to help with his baths and dressing him, and his bowel work, but I said that I could do that. They did send in a lady twice a week to let me go out and shop and to pay bills (and they said for me to even go for coffee to get me out of the house). They were to do the dishes and dusting, his washing (but not mine which was stupid ) but I only had her do the dishes and visit with my husband and she would read the paper to him, also she would tape the Nashville programs on vcr and bring them for him to see as we didn't have cable to get it.

I had the daily job of washing him, shaving him, and doing his bowel work, so that we didn't have accidents (which we still did sometimes). While in bed he had to be turned every 2 hours to prevent the bed sores. I even got an electric air mattress that would rotate the air pockets so that he wasn't laying on the same spot all the time. I would have to dress him and then get a lift sheet under him to lift him up by the hydraulic lift, and move him into the wheelchair and get him axactly in the right spot. We did have a accident with him falling to the floor, but didn't hurt him, but managed to get him back up with the lift. I had to go out and buy him all new jogging suits with zippers down the jacket, so it was easier to dress him. I would have to strap him into his chair so that he didn't slip out. Often after I got him in his chair his blood pressure would drop and I would have to lower the back rest and pull his feet up so that the bloodpresure would normalize, and bringing his head back up slowly. This is why the hospital wanted a different electric wheelchair in the first place but would have been another $4,000.00 and his Ins. Co wouldn't go for it and I wasn't able to.
When I had to take him down to the bath, I would have to roll him over on a mesh lift sheet and hook him up and raise him off of the bed and shove him down to the bathbub and pushing the lift under the tub and lowering him down to the water just enough tension that he didn't float out of the sling (this did happen a few times).It was a little hard to get him back in, but I did manage to get him back to bed and dried off. I put some bungy cords up to the ceiling so that he could excercise. I sewed him some arm slings so that I would put his arms through them and he was able to work his arms back and forth with his shoulders. When spring came I had to take him back to Parkwood to get his electric wheelchair that had finally came in. After practicing with it and getting outside, we deceided that the head controls were no good for him as he was to jerky and I convinced them to put the hand controls on the chair for him so they did. I had the dept. mold a pair of gloves for him that would fit over the toggle and then I would put his hand over the toggle he was then able to move the wheelchair with his shoulders pushing the hand. I did have to control the speed for him depending on where he was. He reminded me of Christopher Reeve in his wheelchair everytime I see him on TV.

At the time I only had a 88 Ford Topaze which I was not able to get him into. We knew that we would need a larger van to get his chair into. I was discusing about selling our park model trailer to buy one and the doctors said no I was not to do that it would not be good for him to have everything taken away, that we should still go to the lake. I have a brother in the Shriners and another one in the Nights of Columbus so they asked for help for us and they came up with the money to buy a used van and paid for the renovations on it. The roof had to be raised and cut to make room for his head and the doors had to be built higher. A lift put in to get him to the floor and some straps put into the floor to hold down the wheelchair from rolling. This was another $13,000.00 We had gotten a used lift to try to keep the expenses down but two years later we had to buy a new one,$4,000.00, after the chains broke on the first one and not able to get it fixed. This came out of our savings.

Next we had to outfit the trailer at the lake to accmodate him. We were able to find a used porch lift that was electric to get him up to the deck and into the trailer. We found out about a store in London that loaned used hospital equipment out, and was able to get a hospital bed (it wasn't electric but would work) and a lift to get him out of bed. He still had to have oxygen at nights so we had to get two oxygen tanks one for each place.
Oh! was he terified when I took him out in the van. He was so afraid of being tied down, and not being able to move. One day when we got out to the lake I was not able to open the sliding doors to get him out, and he was yelling to get him out. It was hot in there with no airconditioning. I was able to get the neighbours there to work on it and get him out. There was another incident coming home from the park 2 yrs later when i saw smoke coming out of the hood and not thinking pulled over to the side of the road and there we were with not being able to get him out the side door. The smoke stoped so it wasn't on fire and I left mom with him while I walked to the next village to get help. Found out it was just burnt belts and they told me I was alright to drive back to town.

He was able to drive his wheelchair arround the park and visit with people that he would see, and go over to the horseshoe pits and watch the guys play, but it did hert him not to be able to play too. He could play crib with me dealing for him, and I had a board made that had a long slot, so to stand up his cards for him to see, and he would tell me what to play. We could still go across to the other campfires and join them for hotdogs and pie irons and jokes. I would have to make sure that he was covered up good so that he didn't get cold or damp, and the same in the daytime cover him up so that the sun wouldn't get to him as he had no way of feeling if he was getting burned, which he could burn easy, with his system. He was always conserned that it was to much work for me to take care of the trailer and him, having to get another man to winterize the trailer, and do any small repairs that had to be done, so he finally convinced me to put the place up for sale. It didn't take long to sell it.

Over the 3 1/2 years that I had him home from the hospital he had been admitted many times, again with infection from the catheter in him. I would have to camp out in his room with him as the nurses wouldn't pump him like I did to help him bring up the flem. The excuses were that they might break his ribs or he might throw up on them. They would bring me in a comfortable chair to sleep in, and the one week they had him in a bigger room and brought me in a cot to sleep in. The problem was that when they had him in a double room with someone else in the other bed that person wouldn't get much sleep with me having to keep moving the bed up and down and pumping him. The nurses did come in every 2 hours to turn him (if I hadn't already had it done)
At this time I never knew the term "Caregiving" but now I guess that is what I was doing. I just thought I was doing my duty taking care of my husband.

By April of 1995 they had talked me into going away for a vacation. They were just about ready to open a new RESPITE program at the hospital and he would be their first patient. They had me demonstrate what I had to do with the nursing staff that would be working on him. They even brought in the ones from the other shifts to learn. They all made him feel so welcome and they spoiled him. They would bring him out in the hall by the elevator, and he would greet most of the people coming off of the elevator, as he knew most people in town anyways. Mom and I took a bus trip to Branson Missouri. When we came back to bring him home he had such a good time he was willing to go back in the fall again. The head one of respite said that I could go twice a year under this new government plan. The OHIP paid for it as they do for all hospital stays in Canada.

But in June he got another infection and had to go back to the hospital. A couple of days later the doctor came in saying that the infection was clearing up and he would be able to go home the next day. My husband asked the doctor why he couldn't die, and the doc said that HE up there, was not ready to take him. That afternoon we had a long conversation about it, and he said he was ready to go, that he was not good to anyone the way that he was. Had I have known what would happen, I would not have gone, but about 10 I went to the nurse to let her know that he was ready to be turned and give him his sleeping pills. So she went in and did what she had to do. About an hour later I got a phone call that he had gone in his sleep. She had gone back in to check on him and he was gone. The doctor said that it was his heart.
After 4 years and 3 months he finally got his wish.

My Favorite Links

Angelfire - Free Home Pages
Support on Information on Pick's Disease
Carols Receipe Box
Family Pictures
Anakin Family Tree
Vacation Pictures
Carol's Fishpond