Graham soon to move to his apartment!

Dear All,

Here is a progress letter from England.

The apartment for Graham is going to be ready in another day or two. Craig has varnished the table and the desk so they are ready. The hoist man is bringing the proper hoist (I didn't know he had not given us that one in the first place...) today. The bed, commode chair and bathchair are being delivered today.

Aura, the live-in caregiver, has been put on the tenancy agreement so is all set to live there now. She and the day-time caregiver have been to RISB for training a couple of times each and that seems to be going really well.

The list of Graham's medications are being given to Sansum who will deliver to his apartment.

Plans to move Graham are firmed up for the 17th. RISB will move him (I believe in his wheelchair) and John and his son will move the mattress and all the other personal stuff.

I hear from the grapevine that Graham is continuing to feed himself when he can, of course with help. This is a good step in the right direction. I have also heard that a way for him to get a drink of water has been devised. Plus, I believe he has been using a voice activated phone at RISB, like the one he has ready for him at home, so that is also a big step forward.

Today (Wednesday) he is having the ITB trial -- this is an injection of baclofen into his spine to see if they can aid his health by implanting a baclofen pump that would deliver the drug directly to his spine and obviate the need for the baclofen tablets, which give him some side effects that should go away if this works. That would be great! So fingers crossed about that.

I spoke with his Social Worker for the In Home Support Services and she thinks there might be a Medi-Cal program that would give him more hours in a day -- and THAT, my friends, would really make the big difference in his care. As you know from my last letter, he had only been granted 7 hours per day of help and that meant he would have to be alone some of the time -- but we were told he could not be left alone. So this new possible program would be a huge help. Everyone please cross your fingers for this one!

For those of you in the area, I know that the first 10 days for Graham will be nerve wracking -- who would not be a bit overwhelmed by the idea? I know I certainly would! So if you are planning to see him, that would be a good time -- better for him to say thanks, but not today, rather than have no one coming to see him. My guess is that afternoons would be best until his morning routine is sorted out. But I am here in England and you are there in California, so I am only guessing.

We will be arriving late the 26th and will go to see him on the 27th probably in the late morning.

It will be so good to see him there in his place!!

OK, not too long but lots of positive news!

Love and peace,
Linda

Before Lift Off -- Last week June 2006 progress report

Dear All,

It seems like a good time to write my final update of this trip, while I await the live-in caregiver to arrive and start moving in.

It has been a very long, very challenging three weeks, with twists and turns that have been negotiated and now we can see the light at the end of the tunnel for Graham to move into his apartment.

The most recent twist was that yesterday I learned that the doctors won't let him come to his apartment without someone being with him 24/7. This came as quite a shock, although it made sense to us, and we had but working on the premise that he could have 7 hours a day paid...so that is what we had arranged. However, with some effort I believe this has been worked out, at least for the time being. The live-in caregiver will be here many more hours (after all she LIVES here) and she likes being home. She will not be doing things for him all the time, but she will be here. We also have a baby monitor that we can set up so that he can call for help. He will have his phone, too, that he can answer by voice but has to hit a button to call out. [So you can phone him and he can answer the phone with his voice!!] But basically I have worked out a proposed schedule that covers Graham all but a few hours a week -- 4 hours on Thursday afternoon are not covered, and 3 hours on Sunday (although 3 hours for church on Sunday have been factored in).

Therefore, those of you who visit Graham regularly, we are hoping will be able to make it possible to be here on a regular basis, so that Aura (live-in) can get out once in a while, and so that Kathy (day-time caregiver) does not leave him alone until Aura arrives. If you are from the church, Genny Bolton said she would try to help coordinate this so please contact her (I have not been able to contact her by email, so someone tell her!) and then this can be worked out with Graham.

He can also do other things -- like visit a day center, for example. And visitors can come and take him out for a stroll in the area, have a meal out, or whatever...

Right now Graham is in the Rehab Institute (RISB) and getting lots of workouts with the OT and PT folks. He is learning to feed himself again and that is really wonderful. He is also getting physical therapy that is aiming to strengthen his arms. They are also planning to put in a baclofen pump which entails an operation to put this into his body so that the baclofen is pumped directly into his spine rather than him having to take tablets. This should help him in many other ways, too. It means he will probably be there until around the 17th of July (and we will be here just 9 days later!).

The therapists from RISB visited the apartment yesterday and said it was really well thought out and set up and I believe it is ready for him whenever he moves in. They are working with the insurance company to provide the final equipment he will need (bed, commode chair, shower chair).

However, the insurance company will not purchase him a manual wheelchair, so I would like to ask the church folks if there is one of your spares he can store here for back up if his other one does not work. The only stipulation is that the seat be 18' x 18' to fit his wheelchair cushion. It does not need to be one that he pushes himself, though that would be helpful if he had to be in it for a day or two. Basically, however, it is not good for him to be in that type of chair except in an emergency situation.

The apartment really is lovely! Craig has been staining the table and desk and will varnish them both during the next week or so. That will give easy surfaces to clean. The ramp worked perfectly when Graham visited here. The hoist is so simple to operate, I believe it will take almost no time for the caregivers to master it with Graham. Just to reassure you, no visitors will ever be asked to hoist Graham in and out of bed or chair! That is done by those who have been specifically trained. But you will SEE it when you are here and I am sure you will all want a little play with it!!

So many people have been so kind again during my visit. I thank you all for making sure I had enough Mexican food (I could STILL have more!!) and I even had some really good Chinese food as well. The Woodmans opened their home and hearts to me again, not only lending me a car for the duration of my stay, but also a cell phone for the first two weeks! I could not have done what I did without the car as I have put around 300 miles on it!

People have given gifts of kitchen goods, bedding, strength in moving boxes, and help in cleaning. I am so grateful to all of you.

The summer holiday is prepared as well. We will be collected in a 12-seater bus from LAX and whisked to the house we have rented on Vista de la Playa off Cliff Drive. We have kind people who are helping to make sure the party on the 6th happens without a hitch. I have had responses from folks who will be coming to it. Some of you have not responded yet, so I hope that means you are not sure but may come.

I would appreciate it if someone at the church would print out the invitation and put it on the board, and perhaps also mention it in the church bulletin and on the couple of Sundays before the 6th of August. Those at Clio, also please pass the word. Even though you don't know Airasa, it is an opportunity for all of us to celebrate not only her marriage, but also Graham's change in his life. But if you can't come to the party, hopefully you will find time to visit Graham in his new apartment when he finally has settled in here.

To remind you all the address is:
5832 Mandarin Drive
Apartment A
Goleta CA 93117
Phone number 805-683-6492

I also got to have some fun while I was here. I went to the lovely Summer Solstice Parade and also to the wedding of Airasa's best friend here! Plus I have seen some of the sights and enjoyed meals out. I confess it has been a little hotter than I like!

Before I get all sloppy and sentimental now, thanking you all for your kindnesses again, just know how appreciative I am. I will finish this now and hit the send button.

Love and peace to you all,

Linda

week 2 June Visit - Progress is our most important product

Dear all,

Another week gone and so much has been accomplished! I thought I would give you another email full of progress!

The apartment is nearly ready for Graham to move in. The ceiling hoist was put in on Thursday and it is really an amazing item -- the track goes all the way from over his bed (location) into the bathroom over the bathtub. There is a ramp into the apartment and the fixed table in the kitchen area has been built. This week the desk will be built for his computer and so forth. On Wednesday this last week Graham and I took the bus to the apartment so he could try out the table for height before the desk is built in. The ramp worked perfectly and the table was just right for him to get under it with his powered chair. I spent 3 hours on Friday morning cleaning because the ceiling hoist work created dust everywhere, a very fine layer of white from the drilling and from breaking through the two door jambs. I had to use a wet sponge on all of the shelves and other items in the room, and mop the floor. It looks really nice however, all clean and ready for Graham to occupy.

Two very good caregivers have been secured. The overnight caregiver is a lovely woman who was born in Guatemala! She will live in with Graham, arriving around 5 pm every day and staying until about 7 am every morning. One thing she was very enthusiastic about was the kitchen and all the kitchen equipment that was delivered at the same time by the wonderful folks from Clio. She says she loves to cook! That will be very nice for Graham's apetite, I am sure! Her name is Aura, pronounced A-oo-rah, and we are hoping she can move into the apartment on the 1st of July ready for Graham about 10 days later!

The other caregiver is called Kathy, and she is extremely knowledgeable about caregiving in the area, having done lots of it. She was recommending all kinds of things Graham might be eligible for, so that seems very positive. She is willing to be extremely flexible in the day caregiving so that Graham will not be left alone for 4 hours every day. Currently we have talked about her being there from 9 to 11 and then from 1 to 3. However, she can change the times to suit them both and so we are feeling very happy about that 4 hour gap no longer being a problem.

As these things are now in place, Graham can go to the Rehab Institute (RISB) and, barring any unforeseen circumstances, that will take place on Monday the 26th (yes THIS Monday). They will pick him up at 10 am on Monday morning and take with them all his personal belongings he will need at RISB. I will follow behind in the car (thank you, Craig and Lorraine for the car which has truly been a Godsend!) and stay with Graham through the admissions process until he is settled at RISB. The first 3 days Graham will be assessed by the doctors and therapists and then a plan with lots of goals will be created. Graham will have 3 hours of rehab a day, and I have been told that they really push the patients there. They should start him back into feeding himself as much as possible and doing other things. Hopefully Graham will be able to continue going there to use the rehab gym to continue making progress.

My final few days here will be spent at the apartment trying to empty enough boxes, or move them around, to put the second bed into that room. As Aura has her own bed, and as it is important to have space for a visitor or other overnight caregiver for relief, I am trying to make the second bedroom at least available! At the moment it is chock-a-block with boxes, many of them are books that will probably stay in boxes for some time to come.

Naturally Graham is anxious about these changes and we are doing what we can to help him to make the transition. He will only be at RISB probably for two weeks, so he might be moving to his apartment on the 10th of July. The doctor at RISB will be ordering his bed and other equipment that he will need so those things are not yet at the apartment, but I am sure they will make certain he has what he needs. They will actually come to the apartment to asses if it is ok for his needs.

I have tested out the apartment already. I found that the fridge freezer was not working, so have had it repaired. I have had the gas cooker and the gas heater checked out by the Gas Company. I have boiled water to make tea and stocked the shelves a bit with some tea, coffe, decaf and sugar so if you come there, you can have a nice hot drink (very English of me!). Cari delivered the beautiful new bedding and also brought me rags, mop and bucket!

Craig is going to stain and varnish the table and desk and also touch up the white paint where the door jambs were broken through to make it all look very nice.

So there is plenty more to be done before I leave.

Then, of course, I will be back with my family on the 26th of July! I will send the invitation in a separate email to this one, but keep the 6th of August open for the pot luck party at Goleta Presbyterian Church.

Oh yes, I have had Mexican food three days in a row now, yum and Ole! Today I am going to the Summer Solstice Parade in Santa Barbara with Craig and Lorraine, and then to the wedding of Noel, Airasa's best friend from when she used to come here all the time. So a day of rest from all the work I have been doing!

Love and peace to you all,
Linda

First Week in June 2006 update

Dear All,

I am going to write an update now for the first week here in California. This is a long one -- as a whole week has gone by and I have been rather busy!!

As you know, I arrived Sunday the 11th and was picked up at LAX by the lovely Joanne Treloar, Airasa's kindergarten teacher from so long ago! She whisked me to Goleta and the IHOP where we enjoyed a meal before she left me at the wonderful Woodman residence where I am staying. The Woodmans have not only given me a lovely big room with nearly private bathroom, they also have loaned me a car and a cell phoneto use while I am here! My cell number, if you wish to phone me is 805 284 1878.. Having the car has meant I have been able to get around and do a lot more things this week! Thank you so much, Woodmans!

Even before my first visit to Graham, I started right in on Monday making phone calls for preparations for the apartment to be completed for his upcoming occupation. Thus I arranged to meet the morning of Tuesday the 13th with the two guys who will build and install the ramp, a built-in table that folds up against the wall, and a built in desk - this building will be done on Tuesday the 20th. Having made contact via email from England, I also arranged to meet that morning with the ceiling lift person to decide how best to configure the ceiling tracks and the lift that will be installed on Thursday the 22nd. The ceiling lift person will also come and train the caregivers how to use the lift once Graham is moving into his place. These two big jobs need to be done before Graham can move in.

I have also designed a swinging shower curtain rail that needs to be built and installed -- as the ceiling lift motor with Graham attached will be going right through the apartment to the bathtub, an ordinary shower rail would be in the way. However, it will be a needed item for the caregiver to have a shower! Thus I have been to Home Depot and seen the right sort of PVC tubing and L-bend connectors, and just have to figure out how to put the large cylinder that will hold the smaller part of the L onto the wall so that the two rails can swing back to let him in, or swing out straight across the bath to create the shower curtain. Any suggestions on this would be happily received!!

This first week has consisted of lots of planning and some very nice visits with Graham. Of course he is feeling apprehensive about this big change, but with the right planning I believe it will all happen without too much difficulty. So I have been doing LOTS of planning!!!

Week two will consist of getting the apartment kitted out with all the equipment Graham needs (hoist, ramp, etc). Also, on Monday the 19th and Friday the 23rd, I will be meeting the three selected caregivers at the apartment to discuss the way forward for Graham's care. We have one evening & overnight caregiver, one day caregiver (4 hours) and one who will float and fill in. It was also vital to have secured the caregivers in order for Graham to move to the next phase of his life.

Week three will begin Graham's big change and personal preparations to move to his apartment. With the lift, ramp and caregivers now in place, Graham will be moving to the Rehabilitation Institute at Santa Barbara (RISB) on Monday the 26th (we think -- things can always change of course). He will be there two to three weeks while they retrain him to feed himself, start to build up his upper body strength again, and train his caregivers how to do what they need to do. They will also order all the rest of the necessary equipment (bed and mattress being the most vital) to have it there when he moves in.

During that week (my third week) I will be attempting to make the apartment into a liveable space for Graham.

First, I will need to move all the things that Graham has at the care home to his apartment. In particular, I will need help moving the TV and TV table (which were given by Clio). Perhaps it would be possible for Clio folks to help arrange for moving them? Please let me know! If anyone is available to help with this moving job, I think it will have to be done on Monday the 26th when Graham moves from BVCC to RISB. They will no doubt want the room cleared on the same day that he moves.

I have already been at the apartment doing a little bit of sleuthing. The manager has done a wonderful job in preparing the apartment to be accessible for Graham. As soon as I mention something that needs to be done, it is done...for example, the plants had overgrown the walkway he will use and after merely saying somthing to Flora, it was cut back the next day! Graham has the large parking space (116) near the entrance he will use to get into his apartment. I will be able to arrange for anyone who will be helping to move items to drive onto the parking area for easier unloading.

As far as unpacking is concerned, that is going to be a big job and not everything will be unpacked!! Here are my initial thoughts about it. As those kind souls who packed up all his worldly goods know, there are dozens of boxes filled with books, papers, CDs, videos, clothes, linens, personal items, etc etc etc. Graham and I have agreed that, for now, the books will remain in the their boxes, as they are out of the way, do not need to be dusted, and Graham can't read them at this time anyway. I do want to unload the boxes of papers for his file cabinets, because the file cabinets are more efficient and space saving than boxes. Also it will be possible for things to be found when they are wanted. Putting CDs and Videos onto shelves will also empty boxes and create a more homely atmosphere for Graham.

We will transfer the COX cable and the Verizon phone lines to his apartment during this third week, making his computer internet connection, television cable, and telephone line live and ready for Graham to use when he moves in. Once again I would like to thank Graham's colleagues at Clio for giving him the wonderful gift of the cable. They are also arranging the installation at the apartment - I will only need to be there to have it installed and connected!

Graham and I have discussed getting him a shredder to eliminate papers -- perhaps someone in the area has one he could borrow once he has settled into the apartment? One thing I have learned is that it is not imperative to own every item if it is possible to borrow from someone who has what I need! As Graham will have limited space, it would be better not to acquire things he can borrow!

One intent is to set up the second bedroom (now the storage room) with a bed for any visitors or for a second overnight caregiver (who would not live there, but might come when the other overnighter is taking a break). At the moment there is no room for this second bed, but I know the bed is already waiting with church people to be brought there when the room is available. We could possibly put it into the caregiver's room for the time being, but I want to ask her first before I fill up her room with too many things. She will be living there, so I am trying to leave her a full room to fill with her own things in her own style.

I have one person coming to help me on Tuesday the 27th so that I can look in all the boxes, and stack to one side all those unlikely to be opened for a while. Then I wish to fill the file cabinets with the papers for those -- I am sure I will find boxes labeled for those drawers as the packers did an excellent job of labelling. I will also put out the CDs and videos onto shelves that have been kept. I am going to try to make the place easy for Graham to move around while he is in his big wheelchair but also have things that he loves to look at in his room on these narrow shelves.

I am hoping to take Graham to the apartment on Wednesday the 21st, after the ramp has been built but before the ceiling lift is installed. It would be a big help if he could make some of the decisions about where things will be put.

The kitchen items collected and given by the wonderful folks at Clio will be brought over on Monday the 20th. I went to the apartment yesterday and cleaned off the dusty kitchen counters and out the drawers (two months of just sitting there empty allows for accumulation of such dust!) in preparation for putting these things away. As there will be building work this week, I may just put them in the cupboards for now. They have collected pretty much everything that will be needed, and for that we are truly grateful.

I am going to church today and have been told there are more things that the fabulous church family has collected for Graham. I will find out today about those items and make plans to get things to the apartment the 27, 28, 29 and 30 of June. That week Graham should be in RISB and I will not be seeing him as much so can get on with setting up his apartment. If there is anyone who would like to give me a hand, I would be most grateful -- it is rather tiring work for me to do it all on my own, as you can imagine. Also, I am not really capable of moving boxes. I will have help on the 27th by one person I have contacted already, but if any of you would like to help, either respond to this email with your phone number and I will call to make arrangements with you, or you can phone my cell number (at the top of this letter).

To review Graham's current medical situation, he is most definitely ready to leave the care facility, where, in truth he has lost many of the skills he had when he arrived here 9 months ago. When at RISB he will have 3 hours a day of therapy -- and they will find out what he can and can't do and what he can develop. After he is in his own apartment, for a mere $25 a month he can join their 'gym' and go there (via Easy-Lift) as often as 5 days a week, and use the weights and other devices to continue to build up his strength in his upper body. This will be a very important part of his continuing rehabilitation.

After he has settled into his routine at his apartment, he will also be undertaking contract work for Clio writing abstracts. This is important for Graham, so that he feels he is a real contributing member of society and not simply a paralyzed man being entertained until he finally dies.

Of course it is a very daunting prospect for Graham to live in his own apartment, even though he will have some help. There will be times during the day when he does not have a caregiver in attendance, and we are hoping that there will be a way to set up a regular visitation schedule with those of you who visit him. Currently the schedule for Graham is as follows. He will have a caregiver from 9 am to 1 pm who will give him a light breakfast, assist with his getting out of bed and into his wheelchair including all the usual morning activities (shower, shave, hair, etc.). She will also do shopping, laundry, light housekeeping, and before she leaves feed Graham his lunch. Graham will then be alone from 1 to 5 p.m. At 5 the evening caregiver will arrive, feed him his dinner, put him into bed, and stay overnight tending to his night needs. She will leave at 7 a.m. (she has other people to work for in the mornings). So he will be alone again from 7 to 9 a.m. We have a third caregiver who will fill in when and where needed when the others are unable or need a break.

This is not yet wrought in stone, of course -- I am only meeting with the caregivers this coming week -- but as you can see there are two time periods Graham will be alone. The 7 to 9 a.m. time he will still be in bed, with his phone button next to him and probably the tv or radio for company. The more critical alone period, from 1 to 5 p.m. will hopefully become filled with several activities. This will be the time he does any work on the computer. One help, therefore, would be regular visitors who could assist him various activities relating to work -- perhaps putting on his headphones to use the voice activated software; perhaps helping with printing things; perhaps getting something else he needs -- until this begins, it is only guesswork on my part what he might need for this. So a visitor at this time might read their own book, and simply be there to assist as needed and requested by Graham.

Of course there are other things visitors could help with during these 4 hours -- we have talked about unpacking boxes one at a time and Graham deciding what to do with the contents. There are also always post cards to write and general visiting to be done.

Another activity might be helping Graham get to RISB for some work in the gym. As we are not yet sure how this would work, it could be something simple like being there to help him get into the Easy-Lift -- locking the apartment when he leaves, perhaps being there when he gets back. At present he has no way to open and close the door himself, though that time will be coming somewhere down the road. There are door opening/closing mechanisms we hope to have installed eventually.

It is a little hard to guess all the possible things a visitor might do, but there would NOT be any lifting!!! [[[[Delicate subject next -- as Graham has a catheter and urine bag, there might be times the bag needed to be emptied as it is usually emptied every 2-3 hours now. Some of you might find this out of your realm, whereas others of you may have done this in the past and think nothing of it...please understand that no one will be asked to do anything they don't wish to do!!!]]]]

I have ordered a couple of drinking aids I hope will make it possible for Graham to get a drink of water when he needs to, something he needs quite frequently. These will hopefully arrive before I leave in two weeks (I go back to England on Sunday the 2nd of July).

So, you can see that I have been very busy this first week. I have also managed to see a couple of my own local friends and enjoy the company of the Woodmans, whose son graduated from 8th Grade on Friday with a very yummy evening party/barbeque here. I have had Mexican food (not nearly enough yet!) and there is more to come.

Today I will accompany Graham to church and back to his room. This afternoon I am meeting with Douglas, who has been helping him a couple of hours a week, to collect the paperwork on the caregivers in preparation for that important next step.

OK, it is a very long update -- but it does bring you right up to now and tell you the plans for the next two weeks.

Anyone who would like to help me, please get in touch.

Also while I am here I will be sending out an invitation to the party to be held the 6th of August asking for people to let me know who is coming along -- though it is a potluck, we want to get a cake that is big enough! Everyone is invited to the party!

I will write another update in a week's time.

Love and peace to you all,
Linda