After the high of Monday and his alertness and our ride in the countryside ....the rest of the week was uneventful and he was not alert again, but lost and often anxious. Friday night, my middle grandchil, who is four spent the night. All the little ones are wonderful but she is the most demonstrative and loves a good cuddle....her nick name is BUG for "cuddlebug".
I packed a picnic and took her Candyland game and her memory game and we went to see Nick at about 11 am Saturday morning. He responded positively to her immediately, wanting to pick her up and smiling at her. She is so dear following the instructions of getting into his line of vision and also that I made her aware that he sometimes holds too tightly and then cannot seem to let go. So, when it happened with her hand, she was not afraid.
I fed Nick his lunch while Janie had her picnic.
We then got on to the floor (Jane and I) in his line of vision and played our board games, some hand clapping games and some singing. She got up now and then to kiss him and pet him and got up into his lap from time to time. We stayed in his room for 3 hours. It was so wonderful for me to have some company while visiting him. And he clearly enjoyed her visit.
I then took her to the park (his home is on a beautiful children's park).She desired some active playtime. Perhaps one of these days I can get him out in a wheelchair into the park again.. I am not sure the noise levels just seems to much for him and he becomes anxious.
Anyway, I am so grateful that she went with me and was unafraid and accepting.
thats the beauty with children, they dont seem to judge. mine are the same, youngest being 3 and all that want is to sit on granddads lap for cuddles or meaningful talks. the older ones are so happy to fetch and carry for him. he lights up when they are about. it takes him out of his self
Thanks for your responses TP friends,
Yesterday after I took my youngest driving in preparation for his exams. Then he went with me to see his dad. It was a good day Nick was responsive and smiled at our son. Our son was sweet and patience feeding his father his lunch (which I did not expect him to do), talking to his father not expecting an answer kissing him and touching him. I hope it was good for them both. Our son stayed about an hour and I stayed on for another hour. Grateful that he they were together at a serene time of day.
I have been thinking I am not doing anything intellectual or for that matter something that produces income. I was in touch with an old acquaintance who wanted me to do some writing around our experience with living with Alzheimer's. I thought about it for a few days and realized even with Nick living in a carehome I am still a very active part of his care. I am still living with the disease and my energy for this experience is limited. I do not want to be an advisor or tell my story other than here. I am tired and I want an intellectual experience away from this realm of Alzheimers/Dementia, or perhaps I do not wish to do anything at all.....that is ok. So, I wrote my friend and told her I was not interested (which felt like I did not want to help, but none the less I was strong and did not get involved in the project-just wished her luck)
It is not as though I do nothing. I have organized the Brass Section of the Sinfonieorchester Basel to play an outdoor concert to raise money for Nick's old tageheim (daycare) . This daycare were such an outstanding group of people working and managing the day program , I want to help them survive the pandemic if I can. We can have 50 persons at the concert (but that includes the musicians), so 45 guests. Nothing can be served or sold....it will be by donation. The musicians will be paid by the city so all the donations will go to the tagesheim.
I am not surprised that you didnt want to take up your friends suggestion of writing about your experiences. Does this person have any experience of dementia? Im guessing not. The general perception seems to be that once someone with dementia moves to a care home, then the carer can just get on with their life again. The reality is, as you have found, that you are still caring - just in a different way and it still takes up a lot of your time.
Organising that concert sounds wonderful. What a lovely idea.
Yes, caring....still even though he is in the home. I am there every day. Usually one long stretch and a check in now.
Nick fell on Friday May 28, and had a bad head injury.(10 cm gnash) . The hospital stapled his head but emergency took him and it was all very efficient. He was back at the home by 9 pm. No scans were made or tests, not necessary - as the medical directive would mean not action so no tests. No action no intervention just stopping external bleeding. It is somewhat of a relief to know the process works- re no intervention.
It has been a rollercoaster ride again. As he seemed like he was ok for the first few days , just recovering but eating and drinking. Then he stopped that for a few days, now yesterday he was drinking. But he is semi-conscious. I hope he is comfortable. My favorite nurse was out of town when he fell on a weeks' vacation. She is now back and has been lovingly blunt about the situation. She feels we must be ready for hospice situation and the doctor is coming today and she will ask for morphine and whatever it is she thinks they will need to make him comfortable as he declines. He is not getting out of bed so that creates its own problems. He is still swallowing. I will be there when the doctor comes today. But it could also go the other way and he could come out of it enough to lay there another year or two...as he is so young.
I feel like I am in a fog. I had to inform the two children in Norway who have their own issues. It has been almost 4 years and 2.5 years, respectively since they have visited. I understand, young working lives, families and career demands.
The two kids here are busy too. My youngest son has been supportive and will occasionally go to the home but doesn't really want too go. I am disturbed by this but want to respect his boundaries. Our daughter, who is the doctor here, has gone probably 5 or 6 times over the months since he has been in the home. But she went on Sunday evening because I asked her too. She has 3 small children and a demanding role at a hospital. But she is very supportive of me, just busy. I talk to her two or three times a day at the moment and see her every couple of days.
So, I am feeling very very alone in this process at the bedside, just the professionals supporting me. but I guess I must be grateful that we are in a facilities which has allowed me to visit every day since he entered Sept 21.
The body is a machine which holds on to life when the quality of the life has diminished. Dying can be a long slow process. He rallied when I thought he was going in December and January, but of course, I want him to let go. But it is not up to me.....all in his own time.
Oh, @PalSal , this is a most difficult time. The way they can be declining so much and then suddenly rally is a mystery. I was told three times that mum was at end of life because she stopped eating - once after pneumonia, once after a stroke and once after a UTI. The body seems to cling to life - perhaps too hard. Eventually she fell, broke her hip and did not rally.
You can only wait and see, however difficult that is
It is so hard when, in your heart , you know it would be the best thing for them to die but you don’t want to lose them forever and their own body keeps on fighting to stay, meaning they go through even more awful experiences and you have to watch it all.
Thinking of you at this difficult time,
thanks for all your lovely messages. I am so grateful to have had this wonderful group for so many years now. No real change good or bad for Nicky at the moment.
It feels as though everyone's lives move on and we are stuck in this long goodbye...