Some nights Pete wakes up in a panic. He behaves erratically and wants to get out of bed or I find him in already in the wheelchair. I tell him that he has to stay in bed and that he cannot get up now, especially if it is midnight or 4:30 am. His dementia is more frequent and varied. He told me to put the phone numbers of Melissa and Michael in his notebook. I did along with other relatives. I told him to use my phone to make calls as his is no longer working.

Yesterday and today we kept busy. Bridget and Chris met us at the Audubon Center for Wild Bird Rehabilitation on Saturday. It was a very relaxing activity. We saw a lot of owls and eagles and other birds. Every one was calm and Chris helped push the wheelchair. That was a great help and I was relieved that I did not irritate my back. Afterwards we went to a Mexican restaurant and Bridget treated. Pete fed himself mostly and that is always good.

Today after a leisurely breakfast, we went to the IKEA store. I pushed him around the store in the red transport chair while he held the shopping bag. He kept his eyes open the majority of the 3 hours there and showed a lot of interest . We stopped for ice cream on the way home and got in around 9:30. Going to bed was fairly easy-whew!

Also, today we sat and read the first chapter of Anger Management for Dummies. Pete answered some questions which I wote in the black book and seemed to be thoughtful in his answers. I felt that we actually made some headway.

This morning Pete wanted to get up at 6:30 am. He wanted to shave and get ready to leave on a flight to Syracuse to take care of his father’s property. He said he had to meet with a lawyer. This was clearly a delusion as his father has been gone since 1990 and there is no property or plan to go to Syracuse.

The aide, Latrice, was informed about where his thoughts were and she seemed comfortable with the knowledge that Pete was experiencing mild dementia. When he said he had to call the lawyer she said she already called him. Later in the day he remembered this episode. I don’t know a lot about dementia so that is my next topic to explore. Sometimes these things make me weepy as I come face to face with his decline and realize that his problems are indeed my problems. I need to be able to cope with the uncertainty and decline he has due to age at 80 years old and having Parkinson’s Disease.

Tonight we watch TV until 10 pm and athough he did not appear sleepy, I knew it was a mistake to let him stay up past 9. When he went to get up he needed a quarter turn to get into the wheelchair. Well, he immediately started to say he had to sit down while he stood all bent over. I told him to stand up and turn his feet and suddenly he started yelling. he wanted to sit in the wheelchair without turning so then he really would fall crookedly. Being he could get hurt, I was holding him like I always do but he kinda scared me and I guided him into the chair without turning him. He was rattled and so was I. I felt really bad like I do every time he gets like this. I wondered if it is what is called Sundowning. People with dementia experience this when their circadium rhythms are disrupted, which clearly his was.

I pushed him into the bedroom but pretty much let him know I was not happy and was not going to help him if he was going to yell at me. I asked why he always seems to yell at me at bedtime. He apologized.

Of course deep down inside I know it is the disease talking and not my sweet and loving husband of 20 years. I did give him a rather perfunctury kiss goodnight, help him with his cpap mask, bedsheet and lifting his feet. From now on I will work harder at keeping our bedtime schedule.

There but for the Grace of God go I.

I felt that Pete was being a little testy on the drive there when I mentioned again that we were meeting up with bridget. He said he did not know that. I said I told him but he doesn’t remember everything. Then he said “oh, that is why you were speeding!” For some reason, that remark angered me because I had not been speeding. And there was something else but I can’t remember. I tried really hard to dismiss my negative feelings. At the same time, I felt Pete was attacking me and it didn’t end there.

At bedtime he got very demanding and snarley. Sometimes he accepts my help moving and getting into bed and other times he wants to do things himself. The problem is I can’t always tell when that is. He was struggling to get his feet into bed and I asked him if I could help, and I did. We didn’t even kiss goodnight.

We stopped for ice cream on the way home and he got a vanilla cone whiile I got a hot fudge sundae. A nice young man named Adam helped me with Pete when we got back to the resort. Pete could barely stand enough to get out of the car and transfer to the wheelchair. Adam also push the wheelchair up the short but steep ramp and into the unit for me.

Adam works in the little store at the resort snd we actually met through Delilah a week or so ago. He is Egyption and speaks english with an arabic accent. He is very friendly and handsome with a great smile that just lifts my spirit. He just happened to be outside when we pulled in and offered to help, to which I gleefully responded yes!

Today started out pretty well. He seemed rested and so was I. After breakfast, I suggested we see a movie with the giftcard we received for Christmas. He lit up! Pete really likes to go to the movies. We went to see the Doolittle movie in a beautiful theater and had popcorn. It was a really nice story and I laughed and enjoyes it very much as did Pete. He is having an awful lot of trouble moving his feet and with balance. He watched the movie from his wheelchairin the handicapped seating and used the closed captioning device provided by the theatre. I am gald to have these accomodations for him.

We did not eat either lunch or dinner but filled up on popcorn and ice cream. So, Pete went to bed early at about 8 pm. He was incontinent and did not make it to the bathroom in time. But, it was not too bad so we just changed his pants, he asked for his medicine and went to bed. He said that he will take a shower tomorrow.

Overall, today was a very good day. Somedays are diamonds!

Although Pete got me out of bed 3 times last night, I could at least look forward to my aide coming to care for Pete for 4 hours today. In addition, I had scheduled a massage for all of the pain and strain in my body. I think this really made a difference in how I felt. I felt pretty calm and together and caregiver stress was minimal.

I made chili the day before and warmed it up for dinner with a salad and it was really good. Pete enjoyed it too. I had to help him with his spoon through the meal and he didn’t open his eyes much. After we ate dinner we watched Jeopardy and the end of a movie. Pete is still having trouble getting up out of the chair and into the wheelchair. I have told him that he will have to do the lifting himself because I cannot sue to my back issuses. It appears he is trying harder and showing improvement. We still go back and forth between the wheelchair, walker, red transport chair and grey roller walker. I am always moving these back and forth and to and fro and it can get frustrating.

I want to go back to January 1, 2020 to talk about the night we didn’t sleep because Pete could not swallow and gagged all night long. So, In the morning, I asked him if we should go to the hospital since his condition was not improving. we were at Cocoa Beach at the time and drove about an hour to the Veterans Hospital at Lake Nona. We were there about 5 hours while the doctor and nurses administered a breathing protocal and treatment. Pete seemed to feel better but at one point he was tired of waiting for the discharge and got out of bed by himself ready to leave. Fortunately, I returned just in time to “catch” him and got the nurse to help get him back in bed. They then put the bed alarm on. Eventually, the doctor came in to talk with him and told Pete he has to drink more water, prescribed abuterol and prednisone.

On January 12 we were getting ready to go out for ice cream. Pete was walking to the car using the grey roller and went down a slight incline on the sidewalk and then fell to his knees. He got going just a little too fast and I had just walked about 10 feet in front of him. Fortunately a nice man came along and helped me lift Pete to his feet. I checked his knees to see they were skuffed up pretty good. Without saying a word I put the hospital address in my phone and drove there but we did stop for ice cream on the way. When we got there at the hospital, Pete asked where we were and I told him I just decided to go because I needed to be sure he wa ok. they did x-rays and cleaned up his wounds and we were there again about 5 hours. But it was good to know he was alright axcept for the pain in his knees.

Now Pete cannot walk or stand very well. His injuries have hammpered his mobility even more so. On Wednesday, this came to fruition when he fell backwards in the bathroom. I called the front desk and asked if the Maintenance Department could come help. 3 men came quickly and helped Pete up and put him in his chair. Fortunately he was not injured.

Strangely, as the men were helping Pete I felt very emotional and teary eyed. I think it is because I think that one of these falls will indeed be serious.

Morning began early. 1:30, 3:00, 5:00, 8:00. I am exhausted from jumping out of bed in the middle of a deep sleep to the call of my name. Pete continues to wake throughout the night mostly needing to use the urinal. Last night he was out of bed in the wheelchair and said he wanted to go into the kitchen to make me a desert. Unfortunately, it was 3 a.m. I told him he must go back to bed and helped him lift his legs and cover himself.

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton