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.