Chapter 459 - Progressing Where?
In an indirect way I discovered then contacted the local Alzheimer's Dementia group in our town. A very supportive lady JB invited me to their group meeting last Wednesday; they meet on the 2nd Wednesday of each month in one of the clubs. On my way in I bumped into the carer of a PD person we know from the local PD group, not knowing that she was attending the Dementia group for the first time as well. Then I learned that the lady running the group is the mother of the OT who indirectly helped us onto the path of support packages when several years ago my cared for person fell in the doorway of the local hospital's physio building. And the guest speaker was the lady in charge of the carer's support group in Hot Air City that funded the short respite at the seaside last November. Then I leaned that another new person to this group lived in the street just outside our village. JB gave me some literature and suggested she meet with me at a coffee shop or at our home. I thought the latter more suitable so she can observe us both, in a fortnight.
Feeling I needed some training to cope with what seems to be a developing situation, I searched for on-line tutorials, quickly finding presentations given by Teepa Snow so I watched and downloaded 16 tutorials of hers from YouTube. And learned a lot, that I need to adapt my behaviour to be more in keeping with the needs of my cared for one.
Had I mentioned my contact with our state PD group? I had asked about locally available "toys" that may interest her to occupy her hands, satisfying to the touch. Some printed material for items such as "sensory cushions" arrived but to my mind she has not reached that stage and may be better served by having the materials and ideas to make such things for others, thus giving her creative satisfaction as well as the sensory experience. Another thought is for her to dress dolls.
This morning at 0900 we left to shop, returning at 1200. First to Coles for some food stuffs, overflowing one of the wheel-chair attached trolleys which was not lost today, then to the paper shop for $20 worth of craft magazines (she insists on needing them yet hardly uses them after browsing through them once before filing them) before a milkshake for her and a coffee for me. Then around KMart where we bought clothes, more sheets for our beds, a couple of rag dolls for her to dress, a tea set painting kit (danger of messiness here), a puzzle book.
I have decided to ask Wild Dog Care for more respite hours, say about 4 hours on a Saturday, so I can meet for coffee with a mate at one of the clubs and complete the week's shopping on my own. And should she wish and if the carer has a suitable small vehicle into which she can use the slider board to enter from the wheel chair, then she can do her idea of shopping, that is, touching, fondling, each item of clothing she sees, and at a slow pace, rather than at the rate I push her between the racks.
A few days ago a call from a distant cousin in another state to see how we were coping. Apart from about 4 face-face meetings ever and a number of emails about our mutual family history we are not very close. Yet she commented at length on my commitment, dedication and much else to caring for my person with PD as if she knew at first hand the trials and tribulations of the task. I have difficulty coping with such statements, for the words do not seem to apply and in some way sound false. Others recently have voiced the same. I'm unaware that any read this Blog to have any insight to our problems. I must find appropriate words to discourage such comments, for I am left bewildered by them. I know not what to say in reply to "How is she?" other than "fair to muddling" for I have no desire to be seen as a winger, detailing our day to day issues, for the purpose of this Blog is to relieve my need to waffle on about what is happening in our lives. And I'm beginning to avoid talking to other oldies about personal health problems; not that I am disinterested and unfeeling, just that it is like talking about the weather, sporting events and shallow meaningless movies.
Most mornings on waking after 0600 she comments that she is unable to open her eyes even though her "eyelids are not stuck together". On Friday she decided to clean dust off the front door; in doing so, she dislodged the end of the thin draft excluder then continued pulling until the whole strip was removed. Yes, the door did need cleaning. On Tuesday she again sorted books and objects in the TV room, including disassembling the WiiFit system which I continue to use, so I put it back together. When I returned from my "respite" on Wednesday, I discovered that the carer had allowed her outside, so she dug in the raised garden bed once again with her hands, requiring her cardigan and shoes to be later washed free of dirt, and of course the floor needed sweeping after she was taken to the bathroom to wash her hands and arms. Another day she took 8 soup bowls and saucers out of the cupboard and aligned them along the dresser with serviettes and spoons. Several weeks ago while shopping and while I was searching for one of the wheel chair attachable trolleys, she collected a number of breads and such plus several sealed packages of fresh vegetables to make soup. I think we each had one bowl each then over a week latter the remainder was thrown out. Today she collected more ingredients at Coles to go with the rest of the fresh vegetables (well those that hadn't gone off by this morning) to make a better brew.
One day she spoke of listening to music in the dark hours when she woke unable to return to sleep. So I bought another internet radio for $300 for her use, setting preset buttons for her to select Radio National, a couple of spiritual channels, some Celtic music, some quiet popular music. The first night she found she was unable to tolerate ear buds because the music was "in her ears, not out in front of her", which a neuro may be able to explain as a spatial mapping problem. Since then, she listens for a short time from the radio's speaker before trying to turn it off.
Feeling I needed some training to cope with what seems to be a developing situation, I searched for on-line tutorials, quickly finding presentations given by Teepa Snow so I watched and downloaded 16 tutorials of hers from YouTube. And learned a lot, that I need to adapt my behaviour to be more in keeping with the needs of my cared for one.
Had I mentioned my contact with our state PD group? I had asked about locally available "toys" that may interest her to occupy her hands, satisfying to the touch. Some printed material for items such as "sensory cushions" arrived but to my mind she has not reached that stage and may be better served by having the materials and ideas to make such things for others, thus giving her creative satisfaction as well as the sensory experience. Another thought is for her to dress dolls.
This morning at 0900 we left to shop, returning at 1200. First to Coles for some food stuffs, overflowing one of the wheel-chair attached trolleys which was not lost today, then to the paper shop for $20 worth of craft magazines (she insists on needing them yet hardly uses them after browsing through them once before filing them) before a milkshake for her and a coffee for me. Then around KMart where we bought clothes, more sheets for our beds, a couple of rag dolls for her to dress, a tea set painting kit (danger of messiness here), a puzzle book.
I have decided to ask Wild Dog Care for more respite hours, say about 4 hours on a Saturday, so I can meet for coffee with a mate at one of the clubs and complete the week's shopping on my own. And should she wish and if the carer has a suitable small vehicle into which she can use the slider board to enter from the wheel chair, then she can do her idea of shopping, that is, touching, fondling, each item of clothing she sees, and at a slow pace, rather than at the rate I push her between the racks.
A few days ago a call from a distant cousin in another state to see how we were coping. Apart from about 4 face-face meetings ever and a number of emails about our mutual family history we are not very close. Yet she commented at length on my commitment, dedication and much else to caring for my person with PD as if she knew at first hand the trials and tribulations of the task. I have difficulty coping with such statements, for the words do not seem to apply and in some way sound false. Others recently have voiced the same. I'm unaware that any read this Blog to have any insight to our problems. I must find appropriate words to discourage such comments, for I am left bewildered by them. I know not what to say in reply to "How is she?" other than "fair to muddling" for I have no desire to be seen as a winger, detailing our day to day issues, for the purpose of this Blog is to relieve my need to waffle on about what is happening in our lives. And I'm beginning to avoid talking to other oldies about personal health problems; not that I am disinterested and unfeeling, just that it is like talking about the weather, sporting events and shallow meaningless movies.
Most mornings on waking after 0600 she comments that she is unable to open her eyes even though her "eyelids are not stuck together". On Friday she decided to clean dust off the front door; in doing so, she dislodged the end of the thin draft excluder then continued pulling until the whole strip was removed. Yes, the door did need cleaning. On Tuesday she again sorted books and objects in the TV room, including disassembling the WiiFit system which I continue to use, so I put it back together. When I returned from my "respite" on Wednesday, I discovered that the carer had allowed her outside, so she dug in the raised garden bed once again with her hands, requiring her cardigan and shoes to be later washed free of dirt, and of course the floor needed sweeping after she was taken to the bathroom to wash her hands and arms. Another day she took 8 soup bowls and saucers out of the cupboard and aligned them along the dresser with serviettes and spoons. Several weeks ago while shopping and while I was searching for one of the wheel chair attachable trolleys, she collected a number of breads and such plus several sealed packages of fresh vegetables to make soup. I think we each had one bowl each then over a week latter the remainder was thrown out. Today she collected more ingredients at Coles to go with the rest of the fresh vegetables (well those that hadn't gone off by this morning) to make a better brew.
One day she spoke of listening to music in the dark hours when she woke unable to return to sleep. So I bought another internet radio for $300 for her use, setting preset buttons for her to select Radio National, a couple of spiritual channels, some Celtic music, some quiet popular music. The first night she found she was unable to tolerate ear buds because the music was "in her ears, not out in front of her", which a neuro may be able to explain as a spatial mapping problem. Since then, she listens for a short time from the radio's speaker before trying to turn it off.
posted by Kilpike | 4:06 pm
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