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life's a process



Well. almost a week since the grandkids were here and it has been a relatively quiet one. Of course it took most of the week for me to get the house sorted out. We also had lunch with a friend on Thursday, only at McDonalds, but I also bought Chinese food for dinner that night which made it special. I do that mostly on the spur of the moment and usually on a week where there weren't many bills to pay so there is some left-over money for treats. It is hard to give a diabetic like Ray treats as we mostly think of sugary foods such as chocolate, so Chinese food is a special treat Ray can and does enjoy.


Today Trev had some friends visit, he brought them home off the train, we moved to different parts of the house to give him time with his friends. We had a family room apart from the living area in a couple of houses we lived in before we moved back here. I am thankful for the front verandah and the back patio as they give us alternate sitting spaces. Sitting out the back I did notice a lot of weeds in the pot plants so when Ray went to bed I went out and tackled some of those. It was quite warm in the sun so it was a pleasant way of passing time in a good cause.


I have suddenly realised I am used to giving Ray the insulin in the morning and showering him at night. At first both jobs seemed quite hard and I fussed over them. Now it is something I do. In the morning I get up, dress, lay the table, set up for breakfast, give Ray his insulin etc. At night after dinner we generally watch some tv, then when he is tired I set up Ray for a shower about 8.30pm, give or take half an hour, shower him then help him off to bed. It is a process not a pain. Of course it gives me less freedom and mostly I don't go back and turn the tv on and continue watching as it is half way through the next program by the time we are finished. But that is an option if I want to do it.


At dementia support group this week we got an interesting talk on how to visit in nursing home/hostel situation. It applies mostly to people early in dementia but could be adapted for anyone in a long term facility I guess. The suggestion was for an hours visit.


The first 12-15 minutes should be devoted to talk. This is even in cases where the patient /resident can't talk. It is like you coming home and telling your mother about your day. I probably do this first with Mum. It is a synopsis of my week. I first say how glad I am to be sitting with her, tell her how well she is looking etc. Then I talk for a bit. Sometimes she'll look at me from time to time. I suppose someone with aphasia might do that too.


Then the next 15 minutes is a sort of "show and tell" he suggested magazines, a picture book, photo album, letters, anything that the person might find interesting. He told us how an uncle used to be a train enthusiast and how he took in magazines about the railways, collectors books, and even an engine or two as objects of interest. He told how another lady from one of the groups he had been involved in previously made up books of family photos and told her mother stories about each person. If any of you have seen the film: "The Notebook" I guess that is a similar idea.


The next 15 minutes should be movement. If it is possible this is when you should take them for a walk, help with therapy, range of motion movements etc. If the person cannot get out of bed it is fine for you to move around a bit as this means they will follow you with their eyes at least and register the area around the bed and away from their usual focus. Even a walk to the window to look at the view will add interest to the visit. This was a new idea to me although I was a hospital visitor for a few years no-one had ever suggested this before. It wakes the visitor up a bit too as it is too easy to relax and get sleepy if you sit still too long.


The last fifteen minutes is sensory, so aromatherapy, relaxation exercises, maybe bring a favourite CD from home and listen to it together. He suggested a sweet treat of some kind and said the best for little olds was a couple of marshmallows. I used to give Mum a chocolate but stopped for some reason so will start that again. Not too much sugar though, if you are leaving a person hyperactive the staff will not thank you for it.


I find that this kind of process suits me as I don't have to think before each visit to Mum: "What will I do with her today?" I can just think to myself, maybe one of the photo albums and a couple of chocolates will do as my kit for today and take the rest of the visit as it comes. Visiting should be enjoyable to both parties after all, or after a while you dread going. It is a long term project for me as Mum has been in care for almost five years now and I visit her twice a week. I think most of the above would suit for any long term placement with variations to suit the personality of the visitor and the visited.


And so life goes on, one day at a time, one foot in front of the other. Hopefully for the foreseeable future.


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Thank you for sharing your knowledge. What great ideas when visiting someone or even spark up the home environment as a Caregiver.

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Guest lwisman


Hi Sue,


Sounds like you have just about made it back to your normal routine. LOL.


Thanks for sharing the dementia visit suggestion. Wow, when my Mother was still living and had Alzheimer's I was never able to make it to an hour visit. Early in her disease I would take her out for a meal -- either to my house or to a restaurant. That would take time and add steps. Later I limited my visits to 30 minutes tops and went more often. The ideas you gave may have helped me to extend the visits.


Suggestions I received were to always put yourself in their world. When she asked where Dad was. Don't say "He's dead." but rather "He's gone to the store." There comes a point where they may not remember that someone has died and telling them is to have them experience the death all over. Don't know if that is true, but Mother did not become as agitated with the store explanation. Another thing I remember being told is that your loved one reaches a point where they can not learn new things. Don't sweat it. For example, my Mother never learned she had a great-grandson. Every time she met him (he was 3 when she died) it was a new experience. One interesting thing is that she always referred to him as she.


Another thing I was told is that patterns are important. When I took her for a meal, first she changed clothes. I always brought her outside purse. Her diamond rings were in it and she put them on. They we went down the elevator to the car, etc. One time my niece came and took her out to eat. Kathy did not know the routine and reported that Mother was agitated. Kathy didn't understand until the purse procedure was explained. Interesting.


Interestingly, I remembered this when I first had my stroke. I discovered that patterns were very important to me. I had to follow the routine, or I would get confused. Now I am much better, but it took time.

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I just had a visit from a dementia worker. She came to me via a referral from the rehab unit Ray was in after the fall which gave him the fractured pelvis and cracked hip socket. The group have an outreach team dealing with post-stroke not post-injury so could not take us on. Maybe they thought referring me to a dementia worker would at least fix one of our many problems.


As most workers do she came with the best of intentions. But after she listened to my story of caring for Mum and now for Ray she admitted I probably knew as much about the management of the disease as she does. She was pleased I had joined dementia groups on and off line and also Strokenet and that I was seeking to educate myself as much as possible about the disease and how to care for a person with the disease.


As Ray's dementia results in him losing more of his abilities it gets harder to find workarounds that suit both of us. If I am in a good frame of mind myself nothing phases me, if I am tired, overburdened and cranky everything seems to be so hard. Lin you are so right that it is the pattern of life that is important, both to Ray and to me. It seems that when we step too far away from the routine of every day life that is when the burden feels heavier. I do know that change is the enemy here and Ray's behaviour is often attuned to seeking his comfort zone, like the verandah, his favourite chair and his comfortable bed. And that is where he wants to be when he feels insecure..


But as usual - so far, so good.

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