California Updates Nearly Over 21st January
Dear All,
Another update for you since my last one. So much happens in a day here!
We have been to visit Rehab Institute at Santa Barbara now. It is like a palace compared to BVCC (which Graham calls Buena Vista Chaos Centre!) with very posh surroundings, a pool, rehab for 3 hours a day both PT and OT and fancy bathrooms in every room. It will only be a 2-3 week say which is too bad as I could see him really liking it! One thing that was a bit disturbing is that in the main they do all their transferring from bed to chair and so forth manually --- meaning a person lifts and moves them rather than a hoist. I could see the terror in Graham's eyes when we were told this and even though we were rassured that this is safe both for the patient and for the backs of the caregivers, frankly I am sure this is NOT the way for Graham to be moved. As I have said to him and others, even if he was never dropped or slipped in a transfer, he would fret about it all day every day and that would not be good for his general life attitude. Fretting over that seems very pointless when all these nifty hoists have been designed to help someone like him.
So I went online and found ceiling hoists with tracking systems that would take him from bed to open space to be put into a chair, or right into the bathroom over the tub for his shower. This seems like an ideal way to move him, and we have had a couple of positive emails from people who use this sytem. It has so many advantages over all the other ways of moving him -- it would mean one person could do it and that person would not need to be strong; the bathroom would not need modification as the track would take him directly over the tub for bathing; there would be no bulky portable hoist to park in this or that corner; it is good in both wet and dry conditions; it is not even that expensive when thinking about costs of normal hoists and shower chair and walk in shower! So I am pursuing that with the various agencies and insurance. It might be we would have to have someone install it at our cost but I think the insurance company will pay for it.
I have also looked into fancy beds that move and undulate under the person so that bedsores/ulcers are prevented without someone moving and shoving and pushing and placing pillows under him. This would mean better sleep for both him and his caregiver who will be living in.
The apartment folks are going to refurbish (paint and repair) the apartment; and the carpet I chose (mottled blue and brown, tight loop) is actually a very special carpet they are going to put in for him, not anything like the usual types of carpets. They are so nice at the apartments and looking forward to having Graham back there. We have paid the holding fee and only have the rest of the security deposit to be paid by the 1st of March. Ruta has kindly assisted with getting this to the manager as Paperback Alley, her bookstore, is literally around the corner from the apartment building. Ruta has also agreed to check Graham's mail at the apartments every once in a while, which is a big help too. Thank you Ruta.
We have made arrangements to go to church again, which I feel is vital to Graham's mental health. He had a church member visit him a couple of evenings ago and at the end of the visit they prayed together. It was very helpful to Graham to do this, and so if any of the rest of you church family members who visit him were to suggest a little prayer when you were leaving, I sincerely believe this would be incredibly beneficial to Graham.
We had an outing to a nearby shoe store (just across the main road and one street down) which is called Footlocker. We had talked about him needing bigger shoes and hoped we could get something slip on or moccasins. However, this is a sport store so at first we were thinking when we got there it would not work. However, I spotted some Converse Allstars, which are canvas and not all padded and stiff, and we got him a lovely pair of those that are so much easier to put on and off. He has seen the podiatrist, who cut his toenails and cut off the ingrown part of his big toenail. They are going to take the root off that side of the toe next time, as it seems to be a continuing problem. ahh, I just checked and see I told you all about the shoe excursion already, but this does have extra info so I won't delete this paragraph.
We had a very good meeting with people from California Dept of Rehab again and a fellow named Doug came in as well. He is going to be helping Graham with various things for the next few weeks. He, along with these women from DOR and ILRC, will be part of what Graham has been calling the "Linda Committee". Of course when I come I spend 8-10 hours a day with him, doing whatever is needed in general care, correspondence, and so forth, but also sorting out his worries and he will naturally miss me when I am gone. But we have a lot of more knowledgeable people now helping him, people who know the system and where to find help and money for that help.
We have found out, for example, that he can have BOTH Medi-cal and Insurance. Now I didn't know that before! It means that some of his needs will still be paid for by his insurance company while other things will be covered by Medi-Cal. There are also grants that are available that the DOR and ILRC folks know about, so when Carol from ILRC came yesterday afternoon I rather bombarded her with questions about all of this. It is very reassuring to know that Graham has so many powerful and knowledgeable people working on his case.
I had a list when I came here 11 days ago and yesterday we went through the list (which in fact Graham had added to when I arrived) and we have managed to find everything that was lost, put in place things that needed to be put in place, set up his computer onto the internet (thanks again to Clio for the laptop and for the internet connection), order his powerful computer and voice software, start the process of getting him a voice activated phone (thanks to Craig), get his finances into his hands to some extent (we have gone online several times now to his bank and he has seen what he can do and I will pay things electronically from England for a while until everything is set up for him to do things himself), and generally get well on the road to putting him into his own apartment.
The next step is that the DOR is going to go to Clio and see how Graham can return to work. Naturally he won't be going back for a 40 hour week -- that may never happen. But he can start slowly at an hour or two a week perhaps. He might be able to do work from home. They might be able to modify things at Clio so he can get his wheelchair upstairs on some sort of lift. In any event, work will be the next thing to get happening in the near future.
I know that Graham truly wants to return to working. He has said that he does not want simply to be entertained but wants to do something meaningful for the community. We all know his mental capacity for putting words together, so he will possibly become a writer rather than a proofreader. He can read and summarize things or he can write interesting things that others will want to read.
All things considered, Graham is really only in the first stages of this life changing experience. One year on is not very long when we consider how much of his life has been changed.
Once he is in his own apartment he will be more the captain of his own ship, be able to direct his life in his own routine. When there are 149 other people to look after, he is only one tiny part of a huge impersonal jigsaw puzzle of caretaking at this home. When he is in his own apartment, he will be able to get up when he wants to, eat what and when he wants to, and have a shower more often than he gets at present!! He will be able to LIVE his life rather than have people simply moving him around from place to place and feeding him and giving him his meds. It will be a very different situation.
I know he is apprehensive about the move, but when he saw the photos of the apartment I think that helped. Also the concept of the ceiling hoist, giving him such freedom of caregiver choice and of confidence as he has to be moved from place to place, is a wonderful thing to contemplate. Like those of you who have visited him and seen him in his powered chair will have noticed, this chair has given him freedom of movement that he did not have before. He is like a kid with his first drivers licence!
He has been to the post office several times now -- this is something any visitor can do with him as he can't put the key in the box and take out the mail, but he can roll there and it is good for him to get out. He has also now experienced going to the local shops for getting a sandwich at the deli (before I got here) and to purchase a new pair of shoes. These times rolling around outside are tricky, but the more he does it the more confident he will become. Going to church is an outing that needs to happen every week if at all possible. He probably needs someone to go to BVCC at 8:30 on Sunday to accompany him to church and go back there after it is over, at least for the time being. I know it gives him more confidence to have someone with him right now. It means having Easy-Lift be available regularly, so making the arrangements with them is something he can't do by himself of course.
This Sunday we are being picked up at 9 and they are coming back to church at 11 to take him back to BVCC. Sometimes it is longer at church, other times this shorter stay. I know he feels a bit overwhelmed at church with all the friends there who stop to say hello. He is mentally slower due to the valium they have him taking, and he also has trouble controlling his breathing as he has no control over his diaphragm, but he does enjoy being there and I noticed last sunday he asked for someone to help him be repositioned in his chair, which is a constant concern for him, too.
I have never before witnessed such a large, helpful and kind support system as Graham has. The ladies from DOR and ILRC have remarked that Graham has in place many things other people in his situation will never have.
Thank you all for helping. I know people have remarked that what I am doing is wonderful -- but it makes me feel good to be able to help Graham adjust to his new situation and find a life he can live. It is an opportunity for me to be compassionate and loving. It is gratifying to see Graham as he progresses along the road to recovery and finding equilibrium in his life.
OK, long and newsy and hopefully full of my usual enthusiasm for Graham's improvement as he slowly takes the reins of his own life.
Thank you again to all of you. I have been happy this time to see my friend Elizabeth twice! I have also seen another friend. I have been blessed to stay with Marj and Jim again, who are the kindest most hospitable people in the world.
I have even managed to send information about my peace work to two local schools and make the tentative arrangements for the party in the summer!
I will be leaving at 4 a.m. on Tuesday and currently plan to return to be here in the spring the last 2 days he is at RISB and the first 2 weeks he is in his new apartment. I think my presence then will help him to settle into this huge transitional time. He will not have me here when he goes to RISB but I am sure the local folks will all be ready to lend a supportive hand when he needs it. They will be doing so much rehab with him that visitors will not have as many free hours to see him there! But I know in my heart that all of this is going the right direction and by the time we are here in the summer I expect he will be well into living his life to the full. I expect to stay right in his apartment, on the sofa bed in the spare room, so that I won't need to impose on anyone's hospitality then. However, I will love to have meals out with anyone when I am here than, as I have done this time -- Pepe's is really good for Mexican but I am open to other suggestions.
OK, enough of an update from me. I may write one last one before I go, but if not, I think this pretty muich covers everything! I will probably write one final one when I get back to England.
Thanks to you all for all your support for me while I have been here and of course for your ongoing support for Graham.
Love and peace to you all
Linda
PS Don't forget you too can walk for peace, or do other things for peace -- see www.movingforpeace.blogspot.com for information!
Another update for you since my last one. So much happens in a day here!
We have been to visit Rehab Institute at Santa Barbara now. It is like a palace compared to BVCC (which Graham calls Buena Vista Chaos Centre!) with very posh surroundings, a pool, rehab for 3 hours a day both PT and OT and fancy bathrooms in every room. It will only be a 2-3 week say which is too bad as I could see him really liking it! One thing that was a bit disturbing is that in the main they do all their transferring from bed to chair and so forth manually --- meaning a person lifts and moves them rather than a hoist. I could see the terror in Graham's eyes when we were told this and even though we were rassured that this is safe both for the patient and for the backs of the caregivers, frankly I am sure this is NOT the way for Graham to be moved. As I have said to him and others, even if he was never dropped or slipped in a transfer, he would fret about it all day every day and that would not be good for his general life attitude. Fretting over that seems very pointless when all these nifty hoists have been designed to help someone like him.
So I went online and found ceiling hoists with tracking systems that would take him from bed to open space to be put into a chair, or right into the bathroom over the tub for his shower. This seems like an ideal way to move him, and we have had a couple of positive emails from people who use this sytem. It has so many advantages over all the other ways of moving him -- it would mean one person could do it and that person would not need to be strong; the bathroom would not need modification as the track would take him directly over the tub for bathing; there would be no bulky portable hoist to park in this or that corner; it is good in both wet and dry conditions; it is not even that expensive when thinking about costs of normal hoists and shower chair and walk in shower! So I am pursuing that with the various agencies and insurance. It might be we would have to have someone install it at our cost but I think the insurance company will pay for it.
I have also looked into fancy beds that move and undulate under the person so that bedsores/ulcers are prevented without someone moving and shoving and pushing and placing pillows under him. This would mean better sleep for both him and his caregiver who will be living in.
The apartment folks are going to refurbish (paint and repair) the apartment; and the carpet I chose (mottled blue and brown, tight loop) is actually a very special carpet they are going to put in for him, not anything like the usual types of carpets. They are so nice at the apartments and looking forward to having Graham back there. We have paid the holding fee and only have the rest of the security deposit to be paid by the 1st of March. Ruta has kindly assisted with getting this to the manager as Paperback Alley, her bookstore, is literally around the corner from the apartment building. Ruta has also agreed to check Graham's mail at the apartments every once in a while, which is a big help too. Thank you Ruta.
We have made arrangements to go to church again, which I feel is vital to Graham's mental health. He had a church member visit him a couple of evenings ago and at the end of the visit they prayed together. It was very helpful to Graham to do this, and so if any of the rest of you church family members who visit him were to suggest a little prayer when you were leaving, I sincerely believe this would be incredibly beneficial to Graham.
We had an outing to a nearby shoe store (just across the main road and one street down) which is called Footlocker. We had talked about him needing bigger shoes and hoped we could get something slip on or moccasins. However, this is a sport store so at first we were thinking when we got there it would not work. However, I spotted some Converse Allstars, which are canvas and not all padded and stiff, and we got him a lovely pair of those that are so much easier to put on and off. He has seen the podiatrist, who cut his toenails and cut off the ingrown part of his big toenail. They are going to take the root off that side of the toe next time, as it seems to be a continuing problem. ahh, I just checked and see I told you all about the shoe excursion already, but this does have extra info so I won't delete this paragraph.
We had a very good meeting with people from California Dept of Rehab again and a fellow named Doug came in as well. He is going to be helping Graham with various things for the next few weeks. He, along with these women from DOR and ILRC, will be part of what Graham has been calling the "Linda Committee". Of course when I come I spend 8-10 hours a day with him, doing whatever is needed in general care, correspondence, and so forth, but also sorting out his worries and he will naturally miss me when I am gone. But we have a lot of more knowledgeable people now helping him, people who know the system and where to find help and money for that help.
We have found out, for example, that he can have BOTH Medi-cal and Insurance. Now I didn't know that before! It means that some of his needs will still be paid for by his insurance company while other things will be covered by Medi-Cal. There are also grants that are available that the DOR and ILRC folks know about, so when Carol from ILRC came yesterday afternoon I rather bombarded her with questions about all of this. It is very reassuring to know that Graham has so many powerful and knowledgeable people working on his case.
I had a list when I came here 11 days ago and yesterday we went through the list (which in fact Graham had added to when I arrived) and we have managed to find everything that was lost, put in place things that needed to be put in place, set up his computer onto the internet (thanks again to Clio for the laptop and for the internet connection), order his powerful computer and voice software, start the process of getting him a voice activated phone (thanks to Craig), get his finances into his hands to some extent (we have gone online several times now to his bank and he has seen what he can do and I will pay things electronically from England for a while until everything is set up for him to do things himself), and generally get well on the road to putting him into his own apartment.
The next step is that the DOR is going to go to Clio and see how Graham can return to work. Naturally he won't be going back for a 40 hour week -- that may never happen. But he can start slowly at an hour or two a week perhaps. He might be able to do work from home. They might be able to modify things at Clio so he can get his wheelchair upstairs on some sort of lift. In any event, work will be the next thing to get happening in the near future.
I know that Graham truly wants to return to working. He has said that he does not want simply to be entertained but wants to do something meaningful for the community. We all know his mental capacity for putting words together, so he will possibly become a writer rather than a proofreader. He can read and summarize things or he can write interesting things that others will want to read.
All things considered, Graham is really only in the first stages of this life changing experience. One year on is not very long when we consider how much of his life has been changed.
Once he is in his own apartment he will be more the captain of his own ship, be able to direct his life in his own routine. When there are 149 other people to look after, he is only one tiny part of a huge impersonal jigsaw puzzle of caretaking at this home. When he is in his own apartment, he will be able to get up when he wants to, eat what and when he wants to, and have a shower more often than he gets at present!! He will be able to LIVE his life rather than have people simply moving him around from place to place and feeding him and giving him his meds. It will be a very different situation.
I know he is apprehensive about the move, but when he saw the photos of the apartment I think that helped. Also the concept of the ceiling hoist, giving him such freedom of caregiver choice and of confidence as he has to be moved from place to place, is a wonderful thing to contemplate. Like those of you who have visited him and seen him in his powered chair will have noticed, this chair has given him freedom of movement that he did not have before. He is like a kid with his first drivers licence!
He has been to the post office several times now -- this is something any visitor can do with him as he can't put the key in the box and take out the mail, but he can roll there and it is good for him to get out. He has also now experienced going to the local shops for getting a sandwich at the deli (before I got here) and to purchase a new pair of shoes. These times rolling around outside are tricky, but the more he does it the more confident he will become. Going to church is an outing that needs to happen every week if at all possible. He probably needs someone to go to BVCC at 8:30 on Sunday to accompany him to church and go back there after it is over, at least for the time being. I know it gives him more confidence to have someone with him right now. It means having Easy-Lift be available regularly, so making the arrangements with them is something he can't do by himself of course.
This Sunday we are being picked up at 9 and they are coming back to church at 11 to take him back to BVCC. Sometimes it is longer at church, other times this shorter stay. I know he feels a bit overwhelmed at church with all the friends there who stop to say hello. He is mentally slower due to the valium they have him taking, and he also has trouble controlling his breathing as he has no control over his diaphragm, but he does enjoy being there and I noticed last sunday he asked for someone to help him be repositioned in his chair, which is a constant concern for him, too.
I have never before witnessed such a large, helpful and kind support system as Graham has. The ladies from DOR and ILRC have remarked that Graham has in place many things other people in his situation will never have.
Thank you all for helping. I know people have remarked that what I am doing is wonderful -- but it makes me feel good to be able to help Graham adjust to his new situation and find a life he can live. It is an opportunity for me to be compassionate and loving. It is gratifying to see Graham as he progresses along the road to recovery and finding equilibrium in his life.
OK, long and newsy and hopefully full of my usual enthusiasm for Graham's improvement as he slowly takes the reins of his own life.
Thank you again to all of you. I have been happy this time to see my friend Elizabeth twice! I have also seen another friend. I have been blessed to stay with Marj and Jim again, who are the kindest most hospitable people in the world.
I have even managed to send information about my peace work to two local schools and make the tentative arrangements for the party in the summer!
I will be leaving at 4 a.m. on Tuesday and currently plan to return to be here in the spring the last 2 days he is at RISB and the first 2 weeks he is in his new apartment. I think my presence then will help him to settle into this huge transitional time. He will not have me here when he goes to RISB but I am sure the local folks will all be ready to lend a supportive hand when he needs it. They will be doing so much rehab with him that visitors will not have as many free hours to see him there! But I know in my heart that all of this is going the right direction and by the time we are here in the summer I expect he will be well into living his life to the full. I expect to stay right in his apartment, on the sofa bed in the spare room, so that I won't need to impose on anyone's hospitality then. However, I will love to have meals out with anyone when I am here than, as I have done this time -- Pepe's is really good for Mexican but I am open to other suggestions.
OK, enough of an update from me. I may write one last one before I go, but if not, I think this pretty muich covers everything! I will probably write one final one when I get back to England.
Thanks to you all for all your support for me while I have been here and of course for your ongoing support for Graham.
Love and peace to you all
Linda
PS Don't forget you too can walk for peace, or do other things for peace -- see www.movingforpeace.blogspot.com for information!
posted by Cosmic Sunshine at 2:55 AM
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