Module Guide to Graham (my last long letter from California)
Dear Friends and Family of Graham,
(*ed. note: I wrote this before contact with the CA State Dept of Rehabilitation and they will be helping Graham in many ways. I won't change any of the following email, as it was right at the time! But things have moved on in the week since I left. I just thought for completeness I would add this to the ufoespblog -- I will put the others I wrote from California after the photos but this one really lays out the Way Forward for Graham there! Thanks again to everyone!)
This will be my last email from sunny California and this time I am composing in Word so I won’t lose it before I send it!I would first like to thank everyone for their multitude of kindnesses during my stay.
Starting with Jo Anne picking me up from LAX, continuing with the Friestads who have given me shelter and food and lifts to and from the BVCC as well as other places, and to all the wonderful folks at church and ABC-Clio I have had the privilege to meet and get to know in some small way. I have also met with some of his other friends and feel that Graham is extremely lucky to have all of you! I know he is understandably uneasy about my imminent departure, but I feel confidence that each and every one of you locals will step up to help make the next transition for him be as smooth at it possibly can be.
In this last email I will outline what I think is the way forward for Graham’s continuing recuperation and reintegration into life here in beautiful Santa Barbara. I will break it down into sections and number them. I know this will be long because the email I lost was long and this is replacing that one! I hasten to add that no one need read every word of my emails! You can skip through and find what you want to read. I just wanted to thank you all at the start of this and say ‘I’ll be back!’
Following is my assessment of where we are and where we are going based on short-term more immediate needs and medium-term hopes. Some of this is practical and realistic, other points are idealistic but possible.Graham’s needs in the next few days:
1. COMMUNICATION – to help Graham adjust and keep him in touch there are several ways to get him hooked up to the outside world so that he can be more independent.
a. Telephone – I have ordered a phone line to be hooked up by Verizon and that is going to happen on Tuesday the 27th between 8 a.m. and 5 p.m. His phone line into his room at BVCC will then allow him to get all his calls and not be missed (providing he is there or is brought there!). Today I will be looking into getting him a telephone that he can answer and close by voice activation. His phone number is going to be 805-683-6492 and if he moves room or when he gets his own place, hopefully this number will go with him. It may be that when you phone no one answers – while he is at BVCC you can phone them at 805-964-4871 and they will cooperate in finding him and getting him to his room to talk to you on his number. Those of you who phoned Pinders may remember that we had to phone the main ward number and get him set up to talk on his phone and then phone his number. I am sure with experimentation those who wish to communicate with him in this way will manage. Having his own telephone will be good as he will also be able to phone local folks as well. I will let you know if I am successful in getting the phone in a SHORT message!
b. Computer – Graham will be able to use voice activated software on a computer, something he started to do in England. He has brought with him a CD with his voice print from there and it should be possible to pre-program some of this for him. Anyone who has techie skills might help with this. I am hoping that somewhere there will be a laptop that is not in use that Graham could borrow for the time being to get him on line. He does not need an all-singing all-dancing computer, but he does need one that is internet ready and can take the voice activated software.c. ABC-Clio are facilitating getting a cable with modem for him so that not only will he be able to watch his wonderful new television/dvd/video that owner of Clio Ron gave him, but will be able to connect to the internet and start sending his own email updates.
2. ENTERTAINMENT – Graham has made it poignantly clear that he does not want to be entertained until he dies but wants to be a productive member of society. However, he will still need things to keep him occupied and keep his mind busy! The new TV has capability of playing dvds and videos and he has a large collection himself (stored now) but the BVCC can get him films to watch as well. Others of you may have DVD collections as I know Ruta from the bookstore has a large lending library. Perhaps a list of your items from which he can choose titles would be the best way to find out what he likes and help provide these. Having someone to watch these with is also a very nice way to have a visit – I know Herb D is planning to visit and watch sports events with Graham and that sort of ‘normal’ activity will help Graham in his reintegration into the world. Watching films with him as well would be a nice way to have a visit at times. Talking is great, but you may note that Graham has some difficulties with his breathing when talking; this is because he does not have the full muscle control of his diaphragm as his paralysis is from the chest down. I am sure you will find your own ways to add to his entertainment fun with this suggestion.
3. OUTINGS – believe me this will be vital to helping Graham in his new life.
a. Church – plans are already underway to get Graham to church this Sunday and hopefully it will be possible to have him there every Sunday! Pastor Steve has been arranging transport and the folks at BVCC have been asked to get Graham ready to be collected at 9 a.m. on Sunday for his first trip out. Graham went to chapel in Pinderfields Hospital every Sunday he could and believe me, because he is living day to day and sometimes hour to hour, being able to look forward to weekly contact with the church family and with the service will go a long way to keep his spirits up and being in church will help him to continue with is progress.
b. Outlook Meetings on Mondays – not sure if this is every Monday or just one Monday each month, but there is a group of people in Santa Barbara who all have spinal cord injuries and they meet regularly to share their stories and tips on how to manage their lives. I believe this happens at the RISB and hopefully someone will take on the planning for Graham to get to these meetings. There is a wheel chair vehicle from BVCC that might be able to transport him to and from the Outlook meetings – or perhaps there is the wheelchair taxi Pastor Steve has found or another one in the city that can get him there and back. I hope one of you will take it upon yourself to make this your project to help Graham. I know that the meetings he had in England with others who had spinal cord injuries were extremely beneficial to him.
c. Other outings – once Graham has his powered wheelchair (and even before for those of you who can push him a little distance) it would be great for him to get out and about from the BVCC and once in his new apartment, out and about from that. There is, for example, a shopping center a couple of blocks from the BVCC that has (I am told) a Mexican Café. It would be great for Graham to be able to go out for lunch there one of these days. There might be other local places that would be good for a visit or other places to have an afternoon meal. I would say mid-day outings are the best as by the end of the day Graham does get tired. He is usually up and ready for the day by 10:00-10:30 a.m. and as long as you inform the folks at BVCC that he is going out, where and with whom, and approximately when he will be back, that will be fine. Just make sure that all the ‘medical’ things are done before you go out.
4. Financial and other personal affairs – Louise Moore and Craig Woodman have kindly agreed for the moment to facilitate this part of Graham’s life. This is obviously important and I thank them both for stepping up and volunteering to do these things. Once Graham is online he will be able to take over many of his own affairs and that is the goal in the medium–term. We are not sure about if/when Graham might need Medi-Cal or even if it will be possible for him to qualify for it. The BVCC has said they will help to get it if he needs it when the 100 days is coming to an end if there is not an apartment in sight. If any of you have specialist knowledge of Medi-Cal, please liaise with Louise or Craig.Graham's medium term needs:
5. HOUSING – Graham is very lucky to have been granted permission on his Section 8 voucher to get a 2 bedroom apartment so he can have a live in caregiver. Finding the apartment is something he will need help with so any of you who know about places in Santa Barbara, here is where you can shine. Ideally he would have what is called a Universal Design apartment that already has doors that are wide enough for a wheel chair (36”) and if there is a hallway, it is wide enough to get through. The other important room is the bathroom which is specially built as a ‘wet room’ where he can have a shower in a special chair, and other needs met. Realistically there are very few of these around and all of them are likely to be taken already. It is also important WHERE Graham lives. Even if one of these special apartments came up, if it was the other side of Montecito, it would isolate Graham and make it difficult for him to have people drop by after work, for example. So we are hoping that in the first instance there might be a 2 bedroom place come up at his current apartment location – Flora, the manager, would then ask the folks in the one across from the office to move and would let Graham have that one. It has good straight access from the road and then it would need to be adapted to fit his needs. Taking doors off and putting in a special bathroom might be all that is needed, as Graham will not need to have the kitchen adapted as he will have a live in caretaker to make his meals and take care of that aspect of his life. It will need a space for his computer and his entertainment center, a space for his special bed, and a specially adapted bathroom. Perhaps one of you locals has access to knowledge in this area and will take a lead on getting this happening. He has only a total of 100 days at BVCC (now down to 92) before the insurance runs out. Once he has an apartment to move to, 30 days notice needs to be given (though if it is in the same complex, that will not be necessary) but more importantly, he will hopefully then move to RISB where they will train him and his caregiver how to work together for Graham’s best interest. As I understand it, once at RISB the insurance will take over again and pay for his care there. So there is a looming time limit on this.
6. CAREGIVER – This will be a vital link in Graham’s life. He will need someone to live in (for room, board and a salary) who will put him into bed, take him out of bed and put him into his chair, perform all the daily hygiene activities with Graham, prepare his meals and help him eat (when there is no one else around visiting), keep the place clean and free from obstruction, and generally be there to help in any way needed. This person will need to be reliable and strong! We are not yet sure if one person alone will be able to perform all of the various activities – for example when Graham is slipping down in his chair, he currently needs two people to shift him back in the seat. However, this is something RISB may be able to assist with, and when he has his new wheelchair, it might be that somehow this will be less of a problem. If any of you know of any caregivers, or where to find them (I do have several brochures and phone numbers) and would like to take over this important finding activity, make yourself known. Until he has an apartment available it is probably going to be on hold, although I have considered that it might help Graham to have someone come to the BVCC 2 hours a day to do some of these things with him now. Visitors will do a lot of little things for Graham of course (see a further point) but he will need the help of a steady, reliable, strong, kind caretaker and we all hope that this person will soon come into Graham’s life.
7. BED AND WHEELCHAIRS – Actually this is not a longer term need but it happened to come at this point in my writing!! Sometime in the next week, Graham will be trying out two different beds that will automatically reposition him in the night from which he will choose the one he will keep, kindly supplied by the insurance company. We have already seen some of these amazing beds, but there have been a few mix-ups in which vendor and which bed is needed. Hopefully he will soon be in a fancy Cadillac of beds that will keep his skin from possible pressure sores and allow him to sleep through the night without being awakened every few hours to be manually repositioned. The Wheelchair vendor was in yesterday taking all the measurements to get him a powered chair, which the insurance company will provide. As they will only provide one chair, we are going for the powered (more expensive) one. The church has several manual chairs and so it might be possible for Graham to use one of those as a second chair. Although the powered chair will have many advantages, it is imperative that Graham not lose his strength and so when he is in a smaller space (like at home) it might be that he will be in the manual chair to get around. When he goes out, it might be the powered one.
8. EMPLOYMENT – As I said above, Graham would like very much to become a productive member of society some time in the medium-term future, after he has adjusted to his new living arrangements and is physically ready to work. ABC-Clio had a meeting about Graham yesterday and I was truly touched at all the kindness that I felt from each person I met as I was both in the meeting and as I was getting a tour of the facility. I was very impressed with the lovely surroundings and ambience of the working spaces and so glad to feel the honest care and concern each person expressed when we were chatting. The Company owner has already set up various things to assist Graham and I truly hope that arrangements will be made one day to welcome him back to work. I believe the California Department of State for the Disabled (not sure of the exact title) is the place to approach for Graham’s eventual re-introduction to work. I have been led to believe (but not been able to verify) that they will help to cover the costs needed to accomplish this – perhaps even paying for a wheelchair lift to be constructed in one of the stair cases to the offices so that Graham could be on site with all the wonderful people who work there. It might be that a change of job would help as to be a proofreader without full use of his hands might prove difficult without some very specialized software, whereas using voice activated software to compose and write things is something that could quickly become an appropriate job. Graham has a brilliant mind and he dictates almost word-perfect letters and postcards, so it would only be a small step to provide what he needs to do the research and write the information using fairly standard software. I can definitely see Graham in one of those cosy cubbies doing his work surrounded by kind colleagues, talking and laughing again with you all, discussing politics or sports in the common room, and generally gainfully employed and offering high quality work. I truly hope that this will happen and it won’t take too long to get there as Graham will blossom more as he becomes more used to his physical situation. It is not even 9 months since his accident and he has already come a long way. Current daily needs:
9. SOCIAL LIFE – perhaps I should have written this section first rather than last so to save you from reading all the way through this, but here it is at number 9 instead! At the moment his lifeline are his visitors and phone calls. He has been blessed with several visitors every day since his arrival and I know there are quite a lot of you who have not yet been to see him. This makes perfect sense as he is settling into this unknown and rather surreal new accommodation, and of course I have been there all day every day to help him with this process. However, today is the day I visit for just a short time and then will say my farewell and open the way for the rest of you to get in and visit with him. He has said he likes the serendipity of people showing up and meeting each other, so having a schedule is not necessary. But it would be nice (and I believe it will happen) if he has at least one visitor every day. This will go a long way to helping him keep sane! There are always things to do with him when you are there ranging from writing postcards to helping him eat if you are there at a meal time. At this moment there is no point in him having a subscription to the LA Times or news magazine, but if you get something already and are done with it, taking it in and seeing if he is interested in any of the articles is a nice thing to do. A note of caution on gifts for him – though he loves the flowers and they are cheerful and beautiful, he has very limited space in his current room and the flowers have no real space to occupy. ABC-Clio folks have already sent him a lot of post cards and stamps (thank you!) but he will need a steady supply of these – yesterday we used 6 of them (granted I wrote three myself to my kids in England…) and he does like to communicate with people by post card. As I mentioned earlier, he is really good at dictation and this is a good way to assist him with contact with the outside world. Once he has a phone, you might set him up with a call if it arrives, or when you leave. I hope to get the phone organized before I leave and this will help with his ability to communicate far and wide.
The end of my email is nigh!
OK, one and all, I have laid out what I think are the most important things to help Graham as he moves into the next phase of his life. He still has a moment every morning, when he has finished dreaming he is able to move, realizing he is paralyzed. This must be so hard and I can’t even imagine how difficult it must be for him.I feel that the journey Graham is on, that I have been privileged to share, is one that will touch many people’s lives in a new way now. I have told several of you the story of how my mother broke both her wrists when my parents were in their 70s. My dad later told me that when they married he had opted out of washing dishes and other chores, but when she broke her wrists and he had to do EVERYTHING for her, he found a real joy in it. He told me with tears in his eyes that he wished he had learned a lot younger what a wondrous thing it is to be able to take care of someone you love. Many of you have expressed amazement that I, his ex, have been able to be so involved in his recovery and done so much, but I tell you all now that it has been (and will continue to be but in a different way) a wondrous thing to be able to expression compassion in so total a way in this situation. Until we have the opportunity to love it is hard to know that we have love to express!
I have been so blessed to be able to help Graham in every way I could to help make his new life more bearable.I give him to you locals now and hope to get emails from you as you visit him. I know various friends and family who don't live in this area are already making plans to visit and I am sure they will find the wamr welcome I have had. No one expects any one to write the long emails I write (typing 90 wpm makes it easy for me!) but short messages saying you have seen him, done this or that, and he is thus and so will be most welcome. I know those of us who will be far away will be hungry for news just as all of you who were far away have been these past 9 months. Reply-all emails will be most welcome from anyone who cares to send one and I know that Airasa, in particular, will want to know things are going well here.
As far as plans for the next 12 months – I plan to return to help Graham settle into his new abode when it comes available so will see you locals again then. Airasa and Ian are already making plans to visit in August 2006 so if you have not met them, you are in for a real treat. (*biased mother speaking!*)
Life is an adventure though not always how we would choose it to be. May you all continue to share in the adventure of Graham’s life. With warm, loving and peaceful thoughts for each of you, I now close my last epistle about Graham and look forward to hearing news of you and your lives as well as whatever you share about Graham.
Kind regards,
LindaXXX
PS I can't leave without reminding you all of the website www.walkingforpeace.blogspot.com where you can read how to get involved with adding miles to the Walk for Peace I am facilitating from Leeds. It has grown outside of the local region now so anyone can walk any time any place and send in their miles. You can be walking for another event and send in your miles. Walking for peace is a way to raise awareness inside ourselves and to add to the growing number of people who are wanting to do something to show they want peace in the world. It all begins in each person's heart and spreads outwards. May you all find peace
posted by Cosmic Sunshine at 7:39 PM
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