Hello from Marilyn
Hi there everyone in Chesterville,
I had promised Jaime that I'd do a post, and I'm only a week late. That is quick for me, my sister is still waiting for her birthday card (May birth). I've been thinking about what to tell you, and I feel that I should give the "State of the Chester Address." There has been a lot going on here recently, and its had a profound impact on Chester.
The big question is: Can we find people to continue to come stay with Chester? Not being able to find someone to be there the weekend that Laura had to be away was a real wake up call for all of us. When Jaime had his reaction, I realized that we had not been addressing the situation of long-term care. I don't know about you, but I really did not think beyond the "yea, he is surviving" and then moving into the "yea, he is thriving" mentality. One of the "states" of Chester is that he does not have the ability to think into the future for himself. I realize now (more clearly in the last couple of weeks that before) that it must be brought to his attention so that he can start making choices for himself, especially as to how his life is taking shape. It is very difficult for him to make decisions, especially quick decisions. It moves him into confusion. Its all part of the brain disfunction that he is now struggling with on a daily basis. Communication is just part of it. He must be given time.
Communication creates a state of frustration in Chester. He knows what he wants to say, but getting it out sometimes takes time... And patience... On both our parts. My favorite game is to take what I think he is trying to say and make it into a funny sentence. He laughs most of the time... The occasional grump is there... Usually on days where things have not gone smoothly for him, and his frustration level is high. Or when he is not feeling good. He has been experiencing a lot of pain from hemorrhoids, and as anyone who has experienced constant pain can tell you, it can take over your life. He has been dealing with it well. He is a very genial presence most of the time, despite the pain. (Just for you to notice, I did not make any comments about 'pains in the ass.')
The one person who has been thinking about the future for him is his sister Misty Dawn. Dawn and their mother live in Missouri, and she has been looking into having a small bungalow (prefab barn) built on their property. He would have his own place, they would be able to care for him, but he would also have privacy. But that all takes time to get it set into reality. This is a major possibility, along with others. A Nursing Home. Last resort only, and he knows that he would die if put in one. There is a wide gamete of possibilities, and I ask you to let us know any you might think, dream, or manifest in your heart/mind/spirit.
The time I spend with Chester is trying to find out what he might need/want, and making him laugh. He brings out the best in me and the worst in me. The mixture creates fun and laughter. He is still a healer. He is still naughty. He is aware of his situation being out of his control. He needs to rely on other for his daily needs. And this for a man who was extremely independent. He worries about having seizures, so has been limiting his excursions into public. He can not stand for his right side (nor right shoulder) to be touched. He gets strange sensations when touched in those areas. He loves tapioca and rice pudding. He no longer can tolerate spicy food or really cold food. His favorite food right now is a combination of mashed potatoes, celery heart and parsnips, yes, all mashed together (try it, you'll like it). He just finished his first round of chemo since stopping the drugs so his head wound could heal. I think he will have another round (5 days) and then get another MRI.
That is all I can think of at the moment. If it seems a bit scattered, well that is the 'state' of Marilyn right now. I always blame everything on menopause, cause I can, so that is my excuse. I hope this finds everyone well and in good spirits. Our spirits are connected through Chester. My love goes out to you, those I know and those who I've yet to meet. Be well. Marilyn
I had promised Jaime that I'd do a post, and I'm only a week late. That is quick for me, my sister is still waiting for her birthday card (May birth). I've been thinking about what to tell you, and I feel that I should give the "State of the Chester Address." There has been a lot going on here recently, and its had a profound impact on Chester.
The big question is: Can we find people to continue to come stay with Chester? Not being able to find someone to be there the weekend that Laura had to be away was a real wake up call for all of us. When Jaime had his reaction, I realized that we had not been addressing the situation of long-term care. I don't know about you, but I really did not think beyond the "yea, he is surviving" and then moving into the "yea, he is thriving" mentality. One of the "states" of Chester is that he does not have the ability to think into the future for himself. I realize now (more clearly in the last couple of weeks that before) that it must be brought to his attention so that he can start making choices for himself, especially as to how his life is taking shape. It is very difficult for him to make decisions, especially quick decisions. It moves him into confusion. Its all part of the brain disfunction that he is now struggling with on a daily basis. Communication is just part of it. He must be given time.
Communication creates a state of frustration in Chester. He knows what he wants to say, but getting it out sometimes takes time... And patience... On both our parts. My favorite game is to take what I think he is trying to say and make it into a funny sentence. He laughs most of the time... The occasional grump is there... Usually on days where things have not gone smoothly for him, and his frustration level is high. Or when he is not feeling good. He has been experiencing a lot of pain from hemorrhoids, and as anyone who has experienced constant pain can tell you, it can take over your life. He has been dealing with it well. He is a very genial presence most of the time, despite the pain. (Just for you to notice, I did not make any comments about 'pains in the ass.')
The one person who has been thinking about the future for him is his sister Misty Dawn. Dawn and their mother live in Missouri, and she has been looking into having a small bungalow (prefab barn) built on their property. He would have his own place, they would be able to care for him, but he would also have privacy. But that all takes time to get it set into reality. This is a major possibility, along with others. A Nursing Home. Last resort only, and he knows that he would die if put in one. There is a wide gamete of possibilities, and I ask you to let us know any you might think, dream, or manifest in your heart/mind/spirit.
The time I spend with Chester is trying to find out what he might need/want, and making him laugh. He brings out the best in me and the worst in me. The mixture creates fun and laughter. He is still a healer. He is still naughty. He is aware of his situation being out of his control. He needs to rely on other for his daily needs. And this for a man who was extremely independent. He worries about having seizures, so has been limiting his excursions into public. He can not stand for his right side (nor right shoulder) to be touched. He gets strange sensations when touched in those areas. He loves tapioca and rice pudding. He no longer can tolerate spicy food or really cold food. His favorite food right now is a combination of mashed potatoes, celery heart and parsnips, yes, all mashed together (try it, you'll like it). He just finished his first round of chemo since stopping the drugs so his head wound could heal. I think he will have another round (5 days) and then get another MRI.
That is all I can think of at the moment. If it seems a bit scattered, well that is the 'state' of Marilyn right now. I always blame everything on menopause, cause I can, so that is my excuse. I hope this finds everyone well and in good spirits. Our spirits are connected through Chester. My love goes out to you, those I know and those who I've yet to meet. Be well. Marilyn
posted by Marilyn at 9:29 PM
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