Update from Leeds

Hello all,

Just a quick note here -- I have placed the emails I sent from California below. The spacing is really naff in some of them, but I don't have the energy to fix them. I don't know who actually reads the BLOG but thought it best to have things here as well, as have been so requested.

Graham has made some physical progress I have not told you about -- he has been able to move some of his fingers ever so slightly, and that is great progress because we are now hoping that he might be able to use his hands once again in the future. He needs therapy to help with that, but at least it is a start.

The move to the apartment is done (or will be completed today). Now all we need are the caregivers and RISB and I will be back there in California for the move to the apartment.

Do keep on sending Graham your healing vibes.

Final March update 25th with 5th May updates!

Dear all,

A quick update of the progress made in the past two weeks:

Graham's apartment A will be his on the 1st of April barring any glitches and is lovely!!
Moving of items to keep from old apartment to new apartment will take place next week
volunteers please phone Craig (email address does not work for him, don't know new one!)
Graham actually DOES have one good single bed (I scrutinized it!) so only one other bed is needed -- move is done now - update on 5th May Moving from storage unit to bedroom in new place will take place 4th of April via movers part of the cost will be covered from the wonderful Clio folks fund for Graham. He will receive a refund for days not used at storage unit, negotiated with the kind Lynn. Unwanted items from old apartment will be hauled to dump same day by same movers. All the move is done, old junk gone to dump and rest is in his new place!

Layout has been drawn of new place to help see where things will fit. Need for special height for eating/reading table and for desk to be designed as need 34" clearance for wheelchair. Need to have open space for wheelchair -- no table/desk legs to bump into; possibly attach to walls -- have been told this is possible through one of the agencies he has been working with!

Interviews of caregivers has been slow but steady. More needed to interview. None chosen yet Do you KNOW anyone? Still interviewing this week and beyond. Need caregivers in place for Graham to go to RISB, as part of what they do is train them! Schedules for care needed have been devised. Contract for hiring Personal Attendants has been devised

With luck Graham might go to RISB around 1st of May (caregivers essential for that). RISB will assess his needs and facilitate getting required modifications. Insurance company has agreed to provide full electric bed. Also agreed to provide a floor hoist only but may take it and use as back up if we can get both. Have asked if they will give equivalent money - highly unlikely
Actually NEED ceiling hoist but I have assured Graham we will get that even if we have to take up a collection!

Insurance company has denied getting a lot of helpful aids, e.g., door unlocker, opener, ramp
Ins Co has also denied getting commode chair which is vital but RISB will make sure he has what is necessary. Other funds may be available to tap for things Ins Co has rejected.

Graham's income taxes have been filed and refunds are already on the way!

New computer with professional voice software has arrived and Graham has had one very successful training session. More training sessions will take place to get him ready to contract for CLIO writing abstracts!! New telephone has arrived and when he is in his apartment will be set up to accommodate his needs.

Graham had his first two bus rides to go to and return from his new apartment!!! He found it relatively easy. Bus drivers and other passengers were very accommodating. If you are local, perhaps offer to go somewhere on the bus with him so he will be even better riding them!

We want to take him places when we are here in the summer for the PARTY so practice needed
PARTY REMINDER -- 6TH OF AUGUST AT GOLETA PRESBYTERIAN CHURCH 1-4 p.m. WE WILL CELEBRATE MARRIAGE OF AIRASA AND IAN (which took place 19th November 2005) POT LUCK PICNIC - PLEASE RSVP TO ME SO WE KNOW NUMBERS

The wonderful ramp by Craig worked, but it needs some adjustment - he will need a permanent ramp evenutally. Hopefully there will be funds for that. Our visit to the apartment was really helpful. Graham was able to get through the internal doors of the apartment to the hallway and bedroom though it was tight!

We stopped at Paperback Alley to say hello while we were in Goleta!!

Kitchen items for Graham are being coordinated by the wonderful Alice Chaffee from ABC Clio -
she has the list if you have any contributions, please contact her (email address works for her)
When Graham is at RISB I trust someone will be able to check his mail at Post Office Box - this is VITAL - we have got someone!

Marvelous Douglas will continue to help Graham with emails, paying bills and so forth
We have changed his address from old apartment to PO Box. When he moves we will change PO Box to new apartment address so all post will be collectable by him. He was able to negotiate around the maze of the Oasis apartments to get to Office! Graham will need help to use key in apartment mail box!

Some helpful activity in getting Medi-Cal sorted out (what a bureaucracy THAT is!!)
Wonderful assistance by Dept of Rehab counsellor Susan Mathers in helping Graham
Also wonderful assistance by Carol Baizer and the others from Independent Living Resouces Center. Doctor's Assistant Carol Dodero continues to help in securing move to RISB and reassuring us it is all going to happen.

Graham stated the other day that he is looking forward to moving out of BVCC!! He seems ready for the challenge of living in his own apartment but is, understandably, a little scared
The maze for payment of caregivers is also a bit tricky' A Social Worker should be in place shortly to help with many things, like getting caregivers paid.

The Woodmans have been real stars in letting me stay here!! A HUGE thank you to them!!!
Good meals out with some locals have been fun and interesting. I managed to get some peace work in while here!

Amazing, but $13000+ money borrowed from State Dept for repatriation last Sept has been covered by Ins Co! State Dept still does not know he owes it (left hand/right hand!) but will eventually get money!

Graham will still need a manual wheel chair unlikely this will be provided by insurance or others since he has the nifty powered one but church has storage room with many so perhaps one could be found that would work for him?

Once Graham is in new place, he can slowly go through possessions with help from local visitors
Still need to find or contrive way for Graham to be able to drink water without help from others...

We are having a final meeting with Susan and Douglas on Monday where we summarize the results and plan

Wow -- long list, lots accomplished, only 3 more days before I go home!! My intent is to return when Graham moves from RISB to apartment to help settle him in with his new life there. I am hoping that will be in May; I do have an obligation the 25th of May in England, so must be there then.

Thank you once again to all you wonderful people, locals for helping and far-aways for writing encouragement!

Love and peace,
a very exhausted Linda!!

Second March update from 22nd

Dear all,
Forgive the odd double spacing -- this email program wants to write long lines without wrapping text....so I am using return to keep the lines readable on the computer.

Truthfully, I feel like I have been here for weeks now, but of course it is only 11 days!
There is much that has been done and much yet to be done. I will write a very quick report now, along with a wish list We are taking Graham by bus to see Apartment A tomorrow!!! Craig has made an excellent temporary ramp.

We have discovered that all Graham's kitchen stuff was (wisely, I believe) tossed in the packing and storage phase. Clio folks have said they will organize replenishment of the kitchen stuff (thank you!) so if locals have anything spare in their kitchens, like dishes, cuttlery, etc., please contact Alice Chafee at ABC Clio (address in list of recipients).

We could probably use a list of things for Graham's kitchen -- he does not need a fully stocked kitchen, but simple equipment and eating things for his caregivers to prepare meals and for them to eat. Graham already has a microwave and a set of serrated knives his mom gave him, but that is it! Also, Graham really could use two single beds for his caregivers as the ones he has have seen better days. So, if anyone has a single bed they no longer need or want, please let Craig know (he is in charge of the move after I leave). Also, if anyone has any single bed linens, blankets, bedspreads they no longer need, let Craig know.

We have interviewed 3 potential caregivers and will interview another today. We have got agreement from Marvin at the apartments to be 'on call' during the day when there are no caregivers around. This was a very important thing as In Home Services will only pay for 9 hours per day of caregivers so Graham can't have 24/7 attendants. Marvin will be able to reposition him and give him his tablets at one point when there is no caregiver there, and will be contactable by Graham with a monitor (like a baby monitor) so Graham will have someone to help him if he calls out. His new special phone will also give him a lifeline to the outside world, and Flora and her husband Carlos, who manage the apartments, will be able to help at times, as well. This is so important for him.

We should have the apartment in his name by 1st of April so his old apartment must be emptied by then. Craig is organizing that, so if any of you would like to help him, please contact Craig at email address above, or by phone.

Graham has received his new computer that will help him back to work -- he has used the voice activated software once and it is very responsive to his voice. Of course, he can't have the computer at BVCC -- no room for it and unsecure. Graham also has received his new phone which will be wonderful in his new apartment but can't be used at BVCC. All this equipment is being held by Susan Mathers of the Department of Rehabilitation who has been a star
in getting things sorted out for Graham.

I am leaving next Tuesday so only have a few more days to continue progressing things for the move. I am planning to come back again when Graham is going to move into his apartment to help settle him there and help his caregivers as well. Then I am hoping that Graham and his new life will be under way!!!

Thank you all again for your wonderful support of Graham.
Love and peace,
Linda

first California update March 17th

Dear all,

Well, I have been here for a week, so thought it would be good to give an overview
of progress with Graham’s situation.

We have moved forward with securing the apartment for Graham. It will be Apartment
A with the same address as the previous apartment – which means it is in the same complex
as before so the move will be much easier than we had thought! Much of what is left in his
apartment will not be moved to the new place. We will replace the bunk beds with two single
beds for overnight caregivers. This will be more comfortable for them as so far those we have
interviewed have been in their 50s and personally I can’t see them climbing up to the top bunk!
So having two single beds will mean they each have their own space and bed for sleeping
when they stay over.

We have interviewed two people and have two more next week. We have got agreement
from one of them to be listed on the tenancy agreement and for Housing Authority so that
the paperwork can go ahead. This is great news as we only found out last Thursday that
we needed to have a named second tenant. We are looking for about 4 people to help
Graham in a day, each of three doing a couple of hours of helping and a fourth who would
be on-call, probably the handy man at the apartments who said he would be happy to help
when I spoke with him in January.

We have also been in touch with the insurance company and have begun the process
of ordering the needed adaptations for the apartment beginning with the ceiling track
and hoist. This is quite a nifty system that has what is called the Tarzan feature. The
portable hoist hangs down from the ceiling track on a sturdy strap and when the hoist
with Graham in the sling arrives at a doorway, another piece of strap hangs down from
the track on the other side of the doorway and is connected to the hoist and the first
strap is disconnected and he swings under the doorway. Obviously it is called Tarzan,
as he will swing under doors! He will have track in the living room, the hallway and the
bathroom and there will be two doors to swing under. We are starting with the ceiling
hoist and track to see how long it takes for the Insurance Company to get the permissions
and get it ordered and installed. The folks at the Rehab Institute at Santa Barbara (RISB)
will order the fancy (Cadillac) bed, once Graham has been there and assessed by them.
They have all the specialist knowledge to do this and we are hoping that he will get the
bed that gently turns him in the night putting him at a 30 degree angle first on one side
and then on the other, thus possibly obviating the need for the caregiver to turn him in
the night. They will be able to know what is best for Graham’s condition.

Graham will take possession of the new apartment on the 1st of April and the aim is to
have all of the modifications made by the 1st of May. Once the ceiling hoist is in, this
is the biggest of the modifications and most complicated, the rest will be much easier to
get. There needs to be a ramp at the front door and he will need a special chair in the
bathtub where he will be taken on the ceiling hoist for his (possibly daily!) shower. He
will need the bed, but we are told that can be obtained quickly and it might be possible
to use the one he is currently in, though we are thinking it would be better to get the final
bed before he moves into the place.

He can’t really enter into RISB until his apartment is nearly ready (it can be absent
the bed they will prescribe). One of the things RISB will do is train his caregivers in
how best to help him with his level of injury. We have been glad to find out that, so
far, both caregivers we interviewed have already dealt with other quadriplegics so that
is really good news!

So our hope is that sometime in May Graham will be in his own place! We are going
to take the bus there next week so he can see it and help decide where he wants his things put.

We also intend to empty the storage area by the end of April. All of the things can
be put into the second bedroom for now and then slowly Graham can decide what
to keep and what to reluctantly part with of his belongings. He realizes he won’t be
able to read paperbacks again, so those will be one set of books to find new homes for.
Ruta has graciously agreed to accept any of the paperbacks that have no other new
homes. Thank you, Ruta! We will need to find an appropriate table for the kitchen
area, one which has no obstructions under it so Graham can roll up to it and use it
for reading. We will need to get the single beds sorted out. There will be room for
one or two bookshelves with some hardback books and also for a file cabinet for
his papers. But in general we are hoping to keep the apartment uncluttered and easy
to negotiate.

Graham gets his new computer next week, and the first of the training using the voice
activated software. This will provide him with the equipment to help get him back into
a situation where he can work again in some capacity. The kind folks at Clio have
offered to contract Graham to dictate abstracts onto his computer for them as it became
clear that the special software used at the company cannot be adapted for Graham to use,
and thus his previous position as proofreader/editor will not be something he can return
to doing. However, Graham will be able to read journal articles and write the abstracts
using the new computer and software and thus be able to return to doing some productive
work again. This is very important to his feelings of self worth, as you all can probably
imagine.

Also next week Graham will be getting a new telephone that is quite a clever machine.
When someone phones Graham, he will be able to activate it by voice. To phone out,
he will need to push a button or some sort to turn it on and then call a direct number
that leads him to operator-assisted calls, a free service provided by Verizon for disabled
people. This will mean he will be able to communicate without having to have someone
‘set him up’ with a phone and do the dialing for him. I can see this being a great boon
for him to feel more independent.

In fact, having the computer and the telephone will mean he can be in touch with the
world again, through the internet as well as through the telephone. Like getting his
marvelous wheelchair, it will help to give Graham back a real feeling of being able to
LIVE his life rather than simply to endure it.

There is also no doubt that more physical therapy will help to bring Graham better
ability to control that part of his body that he can move. He will again be set up to
feed himself and after some practice we expect he will return to the abilities he had
when he left England to be able to feed himself with assistance, rather than having
someone feed him all the time.

So, you can see we are moving slowly towards a huge shift in Graham’s living situation.
Of course it is rather daunting to think about, but as we were told yesterday, there are
not a lot of live-in places for people in his condition in Santa Barbara because all of the
people who have his level of disability live in their own homes with caregivers helping
as needed. There is a lot of independence that Graham will gain as time progresses.

It is so important for all of us to remember that it is still very early days in the recovery
for Graham’s accident – It is only 15 months since he fell and there has been a lot of
progress in that time and we are looking forward to even more progress as he begins
the process of moving into his own space and being able to live his own schedule rather
than living in a skilled nursing facility where he has to abide by their timetable and care decisions.

Naturally the support that he has received from the work friends at Clio, the church family,
his other friends and family, have been invaluable for his recovery so far. He will benefit
from encouraging letters, emails, and cards from those of you who are far away, and thrive
on the help offered by each and every visitor he has. Although he will have caregivers
who will do the very basic work to keep him going from day to day, the visits he gets will
be the moments that help him to feel positive about his future. Every time one of you helps
him write a post card, brings him something yummy to eat, sits and discusses this or that,
watches a program with him, or brings something interesting to read, you are helping to
feed his mind, his soul and his spirit. Personal Attendants and medicines can help him
with his body, but it is the human contact that will continue to be of utmost importance
in keeping his heart going!

Thank you to those who help him get to church every week. This is a very important
part of his week and the connections there make him feel much happiness. I witness
how much he is loved by all those who greet him on a Sunday, who reach out to hug
him as he comes into church, who smile at him during the service, and afterwards who
chat with him in the courtyard. I see how his face lights up when he gets a visitor at the
BVCC. I know how important going to get the mail is for him and how good he feels
when he gets a personal message along with the other business mail! I have received
post cards from him myself in England, knowing that one of you have helped him by
writing as he dictates. Communication with those who are far away, and direct contact
with those who are nearby, really make his life worth living.

Thank you all.