Well, this disease is called Alzheimer's. Many people call it Alzheimer's disease. What do we know about the disease when the doctor tells us a family member has it? I'll be honest and say all I knew is that it robbed a person of their memory. I thought it happened to other people and not me. I found out that it was caused by a hardening of the arteries at the base of the brain stem. It is usually diagnosed after death with an autopsy. But as I did my research I found that one in three people will end up with this disease. I had to hit the ground running when it came to this situation in my life. Most people at the age of forty-seven are not on their own for the first time.
Thank God a lady stepped up to help me. I got frustrated because Dad was allowed to stay at the house for a while. I would get so upset with Dad because he changed so badly and so soon. My girlfriend told me to get a Facebook account so I could keep her informed about what Dad was doing and in case I needed help. I would fall asleep in my bedroom right next to the front door and would hear Dad in the middle of the night get up and open the door and start talking to the rabbits in our yard. I had to make sure Dad didn't wander off. I had met a guy at that time that would date usually three days a week. One day when I was gone he locked himself out of the trailer and he spent four hours in the rain. I met a man at the time and was gone for four hours and he had locked himself out of the house for hours in the rain. He told me once that I had abandoned him and that he was going back to his friends he had when he was much younger. I told him that his friends of that time were probably dead and he told me no they weren't. Most would have been a hundred years old.
He would get upset with me because I would go out for about two hours a day. He would follow me or get very upset with me when I got back. He was supposed to be sleeping for his health as he had done for years. He accused me of slipping out to sleep with someone. I was really hurt by this. He thought that ten dollars a month would fill his car. I couldn't seem to make him understand. I took him shopping with me one day to do grocery shopping. I never did that again as it was so embarrassing. He didn't understand that everything was so expensive. One year after he was finally diagnosed he had a stroke. He was paralyzed on his left side and couldn't talk. He had made me promise him I would never put him in a home. Well, I had no choice as I knew I couldn't take care of him any more. The hospital put him in a home in a far off town which took an hour to go too. This was hard on me but I knew it needed to be. He needed physical therapy and speech therapy.
I think it was the second week Dad was in the home he told me and Traci that the home wasn't as nice as we thought. What could we do? I wasn't his guardian, conservator or representative payee at this point. Within a month I had the time to appear in court and was given his guardian and conservator. I felt like I had stolen Dad's identity for he couldn't sign anything for himself. He couldn't make decisions that counted anymore. Well, I tried to tell myself I did it for his own good. It didn't help the way I felt. I had to call Social Security to get to be his representative payee. This is a job as you have to fill out paperwork as to what you did with this person money down to the penny. Medicaid makes you recertify the person once a year as well. Another time you have to explain every penny you spend. I am entitled to a conservator fee and transportation fee for my father. //
Well after six months I moved Dad from the first home to a much nicer home. Dad ended up in the hospital in Mitchell twice in six months for internal bleeding. After the second time in the hospital, my fiancé got Dad set up for his VA benefits that he should have had all along. I was so mad at my mother but she had her problems. We got Dad to the VA and they were able to stop the bleeding with just one look where Mitchell hospital had said they had tried four times to no success. Without my fiancé's help, my father would have passed on by now. It wasn't hard to get my father into VA benefits because he served in the Korean War. His discharge papers or DD214 papers are all that is required. I thank my husband for help.
Before he was moved from this home he had the sheriff called on him because he shook his fists at another resident who had kicked him in the shins. I found this hard to believe that this could be done. I called the sheriff and asked him to clear up his side of the situation. No, my father would not be arrested. It was just to break it up. Only if the family pressed the matter would anything happen? After Dad was in the VA I moved him to a different home with the help of the social worker at the VA. He has been there for going on two and a half years now and he appears to be happy. He doesn't know me or my husband. This hurts and I hate this disease with all my heart that I was robbed of this time with my father. If you have any doubts your loved one might have this disease ask your healthcare professional.
I wish to also remind you that reading the book the 36 hour day is a good start. It gives you a good idea of what you are in for. There are some stages that everyone goes through and some that no one goes through. I have personally with my father went through sexually inappropriate behavior. I will tell you that it is one hard stage to go through. My father didn't care if he made moves on the nurses, my friends or even family. The aggression stage can come in the first part of the disease at the end. My father has had it both. Don't get upset if they get nasty with you as it is not them but the disease. The stage that bothers me the most is the one where my father doesn't want to eat. I don't know if it is because he doesn't like the food or has decided to give up. Just remember no matter what stage your loved one is in that it is the disease; cruel and mean, robbing you of your loved one. I don't think anyone would wish this on anyone. All my prayers, good vibes and everything with you as you travel on this journey. You will need the support to know you are not the only one on this journey. It will help you to have someone to help you through the tough times. You need to get into an Alzheimer's support group and there are many good ones both online and in person.
There are ten-minute tests that can be given to diagnose this rotten, cruel and horrible disease. Watching the testing and seeing a person fail was hard. I find it hard to see someone not be able to remember his name after someone calls him by name. It is hard to watch someone not know where he is even when hints are given.
How come our medical research teams don't do more to find a cure for these diseases. Do the researchers realize how hard it is to watch someone go downhill day after day. Research teams are given the bare essentials as to how many people are diagnosed with this disease but they don't seem to work to find a cure. They receive grants of money to find cures.
The tests are a simple CT scan to see damage to the brain. The paper tests are given to see if the person can comprehend the words. The verbal tests are remembering words and then supposed to be able to repeat them back to the tester. My father couldn't remember the difference between a pencil and a pen. He couldn't remember the three simple words that had been less than three words before. He didn't know the day, month, or year. He didn't know the season either. The home he is in tries daily to get the information out of him. They try to redirect when he gets cranky and sometimes it works and sometimes not.
What are we as caregivers suppose to do besides watch a person decline? How do we not get attached to the victim if we work with them? I don't know how people do it. Some family members can take care of their loved ones in their homes until they are taken home. I have respect for them. I get so upset with my father. Dad has a five-minute attention span and I can't get him on the same page with me. I have to leave my reality when I go see him and enter his. I find it hard to distance myself from the hurt and tears that will come after the visit. I deal with the problems that my father has in a different way sometimes. I listen to music that we used to love listening too.
Dad won't need tests much longer because he is not eating unless fed anymore. Every six months at the doctors I learn he is worse. I know he isn't going to get better but I wh they would work harder on a cure for any of the diseases that don't have a cure yet.