Stories from Caregivers: Tina from KENTUCKY
KY
Tina
FROM KENTUCKY
Hello my name is Tina and above is a recent photo of my husband Harry and myself. Harry and I have been married since 1991. Harry has muscular dystrophy. Through the years we have had to make a variety of changes to our home and lifestyle due to his deteriorating physical condition. I think it helped that we knew to expect deterioration over time...a little here...a little there. Usually he would still have the independence of doing things for himself. He would just modify the way he did them as he slowly, over time lost some abilities. Harry was used to living a very active lifestyle. For several years he had his own towing company with a not so original or unique name...Harry's Towing. He enjoyed cars and although he had previously worked as a mechanic repairing cars, he managed to totally destroy quite a few over the years in the local demolition derby. Sometimes he won and got a trophy! We, like many families enjoyed camping as a family and often spent a lot of time enjoying quite a variety of common, outdoor activities. Harry enjoyed fishing, camping, and firing up the grill often. We became foster parents in 1997. He enjoyed tossing ball and playing with the kids. We even ended up adopting 3 children in 2001 and 3 more children in 2009. It was nice that we had the time to devote to the children and their special needs because of Harry not working any longer. I worked outside the home some but then did in home childcare for a number of years. This made it possible for both of us to be home and meet the needs of the entire family. Harry had some continued struggles over the years with his job. Crawling under cars to hook on heavy chains became more and more difficult for him. Climbing onto the bed of the truck to check things out or get into the vehicles if need be became increasingly more difficult over the years. Cars was all he knew. Cars were all he had an interest in. Well, other than family of course. We were unsure of how long he would be able to continue working in the towing profession. We just took things day by day one day at a time. A position came open at a local insurance auto salvage pool auction yard whom Harry would often have contracts to tow totaled vehicles for. He would be using a loader with forks on the front to pick up the totaled vehicles from the side and move them around the lot in preparation for the the upcoming auctions. This was a good career option for him. He thoroughly loved that job. Harry had always been a workaholic so he didn't mind the long days. He would get in the loader, which they welded an additional step onto the one side to make it easier for him to climb up into. He would stay in the loader until lunch. After lunch he got back up into it and stayed until quitting time. He got a newer loader after a short while with the company and was like a kid who had just received a wonderful gift they had be hoping for. He thankfully was able to continue working in that position for ten years. I'm thankful he was able to do that for as long as he did. Not only did it help the family financially, but also helped Harry mentally. It's important for people to feel useful. We eventually traded in the tent for a pop up camper then to a motor home. Harry also began having to use a scooter when he was outside on uneven ground, but still was able to walk indoors. In 2003 Harry had come to a point that was very difficult for him. He realized he could no longer continue safely doing this job that he loved. He retired in November of 2003. Being the stubborn person he is, one day the following summer (2004) Harry tried to pick up a heavy wooden pallet in the back yard. He lost his footing and the weight of the heavy pallet caused him to get off balance and yes you guessed it, he fell. He broke his left hip. We had no idea how he would heal due to the muscular dystrophy. He had a few screws put into his hip and had to have physical therapy but all in all he healed very well and quite quickly. He was still able to walk some inside the house but not on any surface that wasn't totally flat and level. He wasn't able to walk or stand for very long. That's when he got his reclining lift chair and Jazzy. Jazzy is his power wheelchair. Because Harry is fairly tall (nearly 6'2") he still had some issues with getting from sitting to standing by himself. His Jazzy came with a power seat as well. It lifts him high enough to just slide off slowly onto his feet enabling him to stand. We moved a couple of times and ended up in a home that was quite nice but bathroom space was at a minimum. As Harry's physical condition got weaker it became so much more difficult to get him showered. Then in April of 2017 we were able to purchase a home that came complete with a handicap roll in shower. What a wonderful blessing! Harry got into that shower for the first time and came out rejoicing! Oh the things we take for granted! I can't tell you what having the right equipment has done for Harry. It's just not possible for me to put into words. I so wish we had done this earlier. He was becoming withdrawn and quite honestly often more than just a bit on the grumpy side, which was not his former personality at all. He was becoming very antisocial, which also was not normal for him. Harry loved people and conversations with them. He just wasn't himself anymore. In some ways it was as if we had lost him. I grew concerned that he was giving up on everything. That's why I'm so thankful we found this house with complete handicap accessibility in it. I can truly say it has made a huge difference. It's like Harry has come to life again. We have the right equipment now and it makes my job in caring for him so much easier. I can truly as his caregiver say that it has been a blessing for me personally in making my job easier and in seeing Harry be Harry again. That's not all though. We got another bonus when we moved to the new area. Every Thursday we make about a 10 minute drive to a cruise in. Harry gets to look at dozens of older cars and talk to the owners. It's what he knows and loves and now once again gets to enjoy every week during the summer months. I'm including a photo of Harry on his Jazzy at the cruise in. This was taken while they were calling door prize numbers so he wasn't paying attention to me. Another photo is at a local car show we went to recently near our home. We also recently went to watch a local demolition derby held at the local fairgrounds where Harry use to participate in the demolition derby. He very much enjoyed watching all the cars and talking about many memories of his derby days. I'm so thankful that he has the equipment that is needed for him to still have a good quality of life and enjoy the things he has loved for so many years. If you know someone who struggles with mobility for some reason please consider looking into finding a way to get them the equipment that can give them their life back. I can honestly say it will also make a big difference to the caregivers. There is another item we will be looking into getting him for Christmas that will be a be a big help to him. His reclining lift chair needs replacing. With his height he is in need of a lift recliner that is made for a bigger, taller person. There are many more options now than there were years ago when we got his last recliner. We will be looking at one that will lay flatter which they refer to as a sleeper chair. With this option he can take naps in it and lay flat allowing him to relieve pressure on his bottom which will lesson the chances of pressure sores. The journey is continuing and with the purchase of this home with the special equipment and accessibility daily tasks have been much easier and the whole family happier and with better attitudes. Having the right environment has added so much to the quality of life for the family as a whole.
