Please note that nothing is in quotations because nothing is an exact quote. Bill told me how he felt, but I needed to prompt him.
In September, 2017
I’ve asked Bill what his world is like, because it could help other people who have loved ones with dementia. It may also help others who already have it what they could expect for themselves, and their loved ones.
Now, some may not go through the same steps in the same order, some may have none of the view of their unfortunate condition, but this may help everyone with dementia. His first answer was that it is none of their business; let them find out for themselves.
Bill had been declining on a regular basis. The time had come that he wanted to tell what was going on in his own mind. By then, he could mostly talk so that it was understandable but his sentences were still broken. He was always soft spoken and kind. Never would he get angry and push people away, never would he get angry or annoyed with me.
Since he has always had trouble finding the right words to describe how he is feeling, I thought that if I helped him find some words it might help him, he would be able to express himself. Therefore, I asked him if the world looked normal to him
He said that it didn’t but he just didn’t know what he is supposed to do anymore. Bill also replied that he didn’t feel as if the world was normal, but I don’t know how to…. no words were able to get out after those words. I then asked him if the world seemed upside down to him. He thought for a few minutes, looked at the floor, then at me and with tears in his eyes, his answer was yes, it kind of did seem upside down. Once again, I asked him with tears in my eyes if the world made any sense to him at all. It took him a few minutes to answer that question too. … His answer was that nothing made any sense to him any more.
Those were his answers. These remarks were made sporadically…. I don’t know what I am supposed to do. I asked if he wanted to go for a walk. He would always want to know where we going to walk to. I told him that it was just to the office and back. He would be okay. Today I asked Bill what his world feels like to him. At first, he said that it was none of their business. Then I asked him if his world seemed to be upside down and if it makes him feel lost. He finally answered that it was upside down and he didn’t know what he is supposed to do. I told him that I only could guess how that felt, but I thought that he was brave being in that kind of world and functioning anyway.
Thurs Oct 9th
First, he had an endoscopy done of the esophagus, and stomach on Thursday. Two ulcers were found and upon biopsy, the report showed bacterial infection. The prescriptions didn’t get started until a day later which was Friday.
One day he fell and said that his ribs and back hurt him. All I had to do was touch him and he would be vocal with the pain he was in. It wasn’t with words, but it was a loud moan. I told him I was calling the paramedics and he was going to the hospital. He didn’t want to go so I had to explain that he was hurt and had to get some x-rays taken to make sure he was alright. Therefore, I called him despite his objections. They found no broken bones and sent him back home. It was hard to help him get to the bathroom, stand and walk. I helped him the best I could.
This is where everything took a nosedive. He was weak and losing ground mentally.
On Saturday, he fell again and I called the paramedics to help get him up off the floor. I had comforter over him because he was on the bathroom floor and he was cold. They wrapped him up in the comforter and used it as a sling to carry him to the bedroom and lay him on the bed. That worked well. All this time he was losing ground mentally and physically. All of this time, since Thursday, I had to help him get up, walk, and sit down again.
On Sunday, I had to call paramedics again. They took him to the hospital again. The Doctor called the social manager to see if there were any beds available for Bill. The closest one they had was in a town 35 miles away. I said no. They asked me at the hospital what I was going to do. I told them I would take him home with me. The hospital wanted to know how I was going to take care of him and my answer was that I would do the same as I’ve been doing all along to take care of him.
The next day he was so sick and weak, that he could no longer help me transfer himself from bed to chair. I tried all day to help him. Again, I had to call the paramedics. This time the case manager was in the same hospital that we were in. She looked at him, and looked at me and said sternly that I was not taking him home again. They now had a bed in a local nursing home and they were going to take Bill there. I rode in the ambulance with him to the home, but I couldn’t do anything more. All I could do is follow the lady who does the admitting. I got the paper work done, and then I took a cab home.
The rest is downhill in a nosedive. I do hope that this has helped people with loved ones that have dementia to expect these types of feelings, but you can get through them.
From here and forward, I went to see him every day for at least an hour or two. I spent the night there a couple of times. I laid there hearing him call out in pain and not being able to do anything. I kept begging the nurses to call hospice because DR Sacry could give orders for more morphine and shorter intervals.
Every day I would go in and talk softly to him trying hard not to cry but not doing very well. I told him that I was there. He would always open his eyes and look at me. Sometimes a tear or two would fall from his eyes and I would wipe them away. I told him some things that I remembered that were funny, sometimes I told him memories that only we would know and were very special to us. I always told him that I loved him forever and ever. Then I would ask him if he loved me forever and ever and to blink his eyes if he did. He always blinked for as long as he could do that.
Then one day shortly after that, I walked in and I could tell that he was gone. I kissed him on the forehead, felt for a pulse and there was none. Then I listened to his heart and there were no sounds. I quietly walked up to the nurses’ station and the nurse was talking to a woman, so I just told the aides to please come down to my husband’s room, there are no sounds of life left in him.
The first thing I recommend to any one is that you find a support group. They will give you more details on what is happening inside the body and mind. The thing that surprised me the most was why the body doesn’t want to eat nor drink anything.
This is the end of
“The face of dementia.”