A Story of One Man's Struggle with Diabetes, Dementia, and Living in a Nursing Home

lMy father has been in a nursing home since February of my senior year in high school. He was only 53 at this time. I was only 17 when he was hospitalized from a devastating sugar stroke. Many of you probably have no clue what that is, but it is somewhat identical as a regular stroke only it is caused from having high blood sugar. My father was always very stubborn when it came to his diabetes. First of all he thought all doctors were quacks and did not think they knew what they were talking about. Because of this we have had a horrific chain of events that unfolded in 2002 and the years after. Second of all he never followed his diet or did anything that anyone tried to tell him was good for his health.

I remember that I argued with my father to take his medicine right because I yelled at him and told him he was killing himself. The doctors had put him on a sliding scale and also Avandia to help keep his blood sugar in line, but of course the medicine does not work if you do not take it right. He did not follow the doctor's orders at all and decided that he would not take fingersticks like he should. He also decided that if he wanted to eat a big piece of pie and drink regular Coke he could. All he did then was overdose himself with insulin and then wonder why he was passed out an hour later.

The first major incident happened when I came home from my grandmother and grandfather's house from Sunday dinner. I thought it was strange that my father was home, but his truck was not. I asked him what happened and he really did not respond and just told me he caught a ride home with my Uncle Bobby and he was not feeling good. The next thing I remember was Uncle Bobby coming to the house and by this time my mother had made it home too. Bobby asked if Daddy had said anything, and I told him what he had told me. Bobby then told me that Daddy wasn't telling the whole truth. He had passed out at the restaurant and could not be woken up for a while, so Bobby drove him home. I knew automatically that it was his blood sugar, but I thought it would be low. I checked it with the glucometer and it was high at 500. I told Mom and Bobby that we had to get him to the hospital because this wasn't good. Most of the time you don't pass out if your sugar is high, but you do when it's low. It took all three of us to get Dad loaded into the pickup because he was so weak and unresponsive.

I drove the short ten mile trip in only five minutes because I knew his life was at risk. When I made it to the hospital Mom jumped out of the truck and ran in and told them what was going on and that we needed help. They brought out a wheelchair and it took three or four of them to get him out because he was even more unresponsive. The emergency room got him into a room almost instantly and checked his blood sugar again. It had jumped in a course of ten to fifteen minutes all the way to 665. This is extremely too high! We did not know what to expect because the insulin that they had given him was not working that well. The doctor's knew within a few hours that Dad had a sugar stroke and we were lucky we got him in when we did because he could have went into shock or a coma quite easily.

When we first started talking to the doctors about what to expect everyone had high hopes including them. Everyone thought that he would be back on his feet in no time. The doctors agreed that he needed to be placed in a nursing home for the time to recuperate and get some rehabilitation. Dad did not even know how to walk after all this happened so we knew he needed someone to look after him at all times. He was admitted into the Seminole Estates Nursing Center to get the help he needed. He started to get healthier physically, but no mentally. When we first went to see him after he had been admitted into the nursing home, he thought he was still in the hospital. He didn't remember anything from the events leading up to that day.

We still had hopes of him coming home, but then he started getting really depressed and said frequently that he just wanted to die. This was understandable because he felt like he was worthless because he couldn't work and he couldn't even walk. When you are active and independent and then something like your work is taken from you it is bad enough, but to hear that you can't come home either is even harder. My mom and I kept telling Dad that he could come home when he started walking again, but he had to promise to take his medicine and do everything the doctor said. He worked hard at learning to walk again and in building more strength in his legs. He got to where he didn't need help getting to the bathroom anymore and he could transfer himself from the wheelchair into his bed or another chair.

He started to play games and doing other activities with the other residents and found a female companion, Kay. My mom didn't have any problem with this and neither did I or my other two siblings. The reason for this is right before Dad got sick Mom had asked him for a divorce. Please don't think bad on my mom, there is a lot more to the story than this. To this day my mom has stood by his side and they are still married. The female companion, Kay, that I spoke of had been a neighbor for many years and had just lost he husband less than a year when her and Dad sort of buddied up. His outlook on life got better and better. We thought he was still going to get to come home and then it happened. Kay passed away and Dad had a major setback. He just gave up and quit trying. He wouldn't eat, wouldn't take his medicine, and wouldn't do rehabilitation.

The nursing home talked to Mom and I and said that they wanted to ship him to Okmulgee Hospital to have him mentally evaluated. We agreed that this would be for the best so maybe we could find why his mental ability wasn't really getting any better, but also his mental stability wasn't either. We drove the hour long trip to assist in getting him settled in and went through signing all the paperwork. We then just sat there and visited with him and he told us it was getting late that we should go ahead and head home. We came back two days later when they called and told us that they needed to talk to us. Mom and I did not honestly know what to expect so we were silent on the car ride up to the hospital. The doctor met us in a private room while Dad was eating breakfast. He told us that Dad would never be able to come home because he was going to get much worse than this. They diagnosed him with Vascular Dementia, which is caused from lack of oxygen to the brain. It is almost the equivalent of Alzheimer's, or so I've been told. They then suggested that we look into the disease more and that Dad was going to be put on anti-depressants. None of this was the most devastating news; the worst was when they explained to us that Dad would probably not live another two years.

We stayed with him all day and he seemed to be getting happier and more excited because they were going to release him and let us take him back to the nursing home. We left to take him back to Seminole Estates and he was actually ecstatic to go back because he said he was ready to play dominos and work puzzles with his friends. Mom and I didn't tell him what the doctor had said and he didn't ask. Dad's mental age was that of a ten to fifteen year old at this time. We enjoyed our time with him and just tried to be with him as much as possible. He still started to get better physically, but mentally he stayed about the same.

In 2004 we had another setback, his roommate at the nursing home started stealing Dad's things. Dad was getting really upset so Mom and I decided that we were going to move him into another area nursing home, Wewoka Nursing Center. This was a much quieter nursing home because there were not as man residents and my sister was also friends with the Director of Nursing at the time, so we knew that Dad would get taken care of properly. Dad seemed much happier in Wewoka because he was even more active with the other residents. He often played Bingo and he even played Trivia with them at times. Take in mind that the Trivia is more for children mentally.

Then summer of 2004 my boyfriend, now husband, James, and I moved to Eufaula because of better jobs and whatnots. I came down to see Dad as often as I could and I was taking a Home Health Aide class at Wes Watkins Vo-tech a town over, so it was at least twice a week. I received a phone call one night after class that I was not expecting. My Grandma called, not my mom, and I answered thrilled to talk to her. Grandma then told me that Dad had fallen and had broken a hip. She said that Mom was with him at the hospital in Ada and that the doctors said he would have to have surgery to put a rod in his leg. They also said that there was a very bad chance that Dad would slip more mentally because anyone who goes under anesthetic with Dementia or Alzheimer's loses more. They also told her that his kidneys could possibly fail or get worse too. All I could do was say ok and break down crying. James comforted me, but I was still scared.

The next day I went down to the hospital and saw Dad. Dad and I joked all day and just talked when he wasn't in too much pain. I also fed him because he didn't want to eat. I stayed there all day and then came home with Mom and just spent the night. I had to go to class that next day, which was the day of the surgery. We got up and went back to the hospital and spent as much time with him as we could because we honestly didn't know what would happen. One of my sisters, Melissa, was there. My Grandma, Mom, and Step-Grandpa were also there. I had to leave before Dad was out of surgery so I could make it to class in time. I made my sister promise to call me as soon as he got out. I went to class that night and told my teacher that I was going to leave my phone on, which she said was fine given the circumstances. It rang shortly through class and I picked it up. Melissa said that Dad made it fine, and that he seemed like he was normal mentally. I was so happy I couldn't wait to tell my teacher. After class I drove to Eufaula and told James the good news.

I went back to the hospital the next day and Dad was in good spirits. We had yet another problem though, he was getting a bed sore (pressure ulcer) on his heal because he had to keep his leg straight and the hospital nurse aides didn't know how to float heals right. When he left it was just a blister, which wasn't too bad. At the nursing home the aides didn't float his heals right either so it got much worse. A stage one pressure sore became a Stage 4 rather quickly. When Dad finally got off bed rest and could start therapy, the sore on his heal made it much worse. The nursing home had to bandage it and debris it. This bandage was bulky so his shoe wouldn't fit right. It took over a year to get it healed and by the time it got healed Dad had no heal practically. Shortly after it healed we had yet another set back.

Dad fell out of his chair and broke his other hip in the summer of 2005. This poor man has been through so much already. When this happened the doctors said that he would never be able to walk by himself again. There were the same risks associated with this surgery as the first one. He came out of this surgery fine, like the other one. This time he was in a different hospital though, McAlester. At first I thought the hospital was good because they were going to keep him for rehabilitation there. Boy was I wrong. First they moved him from the regular recovery floor without telling us, so we didn't even know where he was. The second problem was that on the rehabilitation floor you have to bring clothes for them to wear, but they don't wash them. The clothes sour and are ruined by the time you pick them up because they were thrown in a bag and tied shut. The third issue with the hospital was that we came to see him on rehabilitation floor and he was nowhere to be found, and then they tell us he's back up on a different floor without giving us notice again. We go up there and find out he has a bed sore on his bottom and possibly pneumonia.

We came back two days later again and he's in yet another different room, but this time he's in isolation! They told us that he had Tuberculosis. There are many problems with this. Mom and I had been around him, when they thought he just had pneumonia. We would have been exposed, so we were very upset that we were not told about it. So if he did have it we would have gotten it and spread it to everyone else we had come in contact with too. Luckily, this diagnosis was wrong. This is still another thing that irks me to this day. They let a nursing student, unsupervised; administer a tuberculosis test on Dad. She didn't know how to do it and injected the serum into his vein!!! If you haven't ever had a TB test or are familiar with one, a nurse or doctor injects a serum underneath your skin, not intravenously. They then check it in four days and if it bumps up so high, you have the disease. It took me demanding a second test before they would administer one. I had to threaten to call state on them to get him released also. Finally after fighting with them for a week I got him released to go back to the nursing home. This time the nursing home had his bed sore healed up within a month. He was also back to his full physical potential in that amount of time also. He can't walk without help, or even stand up, but at least he's not bedridden.

In light of all the things that have happened to my dad I have found out that I would prefer when I get older to not be put into a nursing home. I would rather be taken care of in my own home. If that can't be done, I would rather be put in a good home that has an excellent record with the State Department of Health. My Dad is alive and well today. Do not ever accept it when someone tells you that a loved one or you will be dead in a given amount of time. God determines this day and when he sees fit he will take you whether you are two hours old, 20 years old, 50 years old, or 90 years old. Take it from me that being a caregiver for a loved one is not easy. You cannot get take this situation lightly. It is a serious matter. If you are not a patients advocate, who will be?