Wednesday, November 30, 2011

What to do for the best

Last Wednesday, at their weekly assessment meeting, the rehab team at Wauchope District Hospital, deemed Barry not to be making sufficient progress to warrant staying in rehab. He had been there three weeks, and the improvement was minimal. So the Aged-Care-Assessment-Team (ACAT) was called in. Today, the ACAT team 'interviewed' Baz, having interviewed me yesterday over the phone.

The ACAT team wants to assess Barry as requiring Low-Care or Hostel Care. They are going to discuss with the Aged-Care facility of our choice, Bundaleer, whether they have space for him, whether they will take him, and whether they can support the specific care-plan that he requires. Bundaleer is the only aged-care facility in Wauchope. It has a 55+ area, a 100-bed Hostel, and a 40-bed Nursing home. I had discussed availabiltiy of a Nursing HOme place for Barry and one was being held for him. However, I had not organised a Hostel place for him.

However, later this afternoon, I received a phone call from the Rehab Unit. They are convinced that Barry should go into High Care, not Low Care. So, we have a bit of a stand-off. However, the professionals are going to sort it out. The Rehab Unit has been with Barry for three weeks, the ACAT team for less than an hour. Rehab is concerned that at night, a Hostel only has two staff rostered on. Barry wanders at night and gets lost and confused and can wander into wrong rooms. This is when he becomes incontinent. During the day, he cannot be left alone for longer than an hour. Issues arise otherwise, and he becomes anxious. Today, he was anxious because a toaster was hot. It had been used to make a sandwich. Cleaned and turned off. But Barry was anxious because it was still hot. He did go and get someone though.

One of the issues, is that Barry has no physical impairment. He is not paralysed down either side, nor anywhere on his face. He knows that something is wrong with his head, but not what. He tries to respond but cannot find what he needs for the grey that envelopes his mind. He is sympathetic to the others in rehab because they are 'worse' than he is. The very injury that he has suffers, stops him from understanding the injury he has suffered.

What I understood from the initial CT-scan is different from what Ross understood from it. Ross maintains that Dr Crighton did not say that the LHS of the brain was destroyed. We were shown a scan with abou 7 slices through the brain. Each slice was nearly totally grey with just a thin line of non-grey around the extremity of the hemisphere (immediately below the skull). A bit like a cowlick in the hair, and about at the apex of a hair-part there was a large blotch of white which we were told was the haemhorrage. This was not the same size in all seven slices, this blotch. Ross thinks that synapses and pathways will be repaired with time. With the second scan last Thursday, we were told that the haemhorrage had shrunk a little, but was still there and still as dense. The stroke was Thursday 27th October, which was 34 days ago. Ross is much more hopeful than I.

There are flashes of interesting insights, though. Today, being shown on a card 7 + 4, Barry wrote down 11. He could not say 'seven plus four equals eleven', but he could compute it in his brain. I told the rehab nurse that Barry is a sudoku fanatic, and they are going to try him on those tomorrow. If all goes to plan or whatever, I will get him a build-yer-own morse code set. He was a radio-technician by trade, in the pre-computer days.

So whilst I would like to see him in a Hostel, I do not really think that is appropriate for him just yet. He would get lost among 100 people, and the care would not be as targetted as may be necessary. The rehab nurse said that his incontinence is improving, now just to control the wandering, and to work out what he CAN do with his brain. Maybe, he will be able to move into a Hostel somewhere down the track.

What I am convinced of, though, is that I can not take him on. I had a long talk with Rehab about this today. They think there is a good chance that he will always have to be monitored by the hour. He is not a physical chore, as long as the incontinence improves. However, he is a mental and emotional chore. And my younger brother and I have both agreed that our families come before Barry. Our families and our own health. That is tough to write, but I acknowledge that it is true.

Top photo taken in Mark Foys Liverpool Street store at Christmas in 1952, making Barry 7, Julie 4 and Ross 2. The bottom photo was taken in the yard of our Hornsby home in 1950, making Barry 5 and Julie 2.


Dutchcloggie said...

For what it is worth, I agree with your decision not to take on caring for Barry. It is very brave to aknowledge your own family comes first. But it should.

I can obviously not comment on Barry's health and whether he needs a hostel or a nursing home. But regarding the hope Ross has, the stroke was only just over a month ago. Functions can take years to improve so don't give up hope after only a month. X

Julie said...

It is worth a lot, seeing what you have just been through. However, the weight of siblng obligation remains. I also think that maybe being with LOTS of people rather than just with one person in an apartment, will be better for him.

I will try to read up on strokes and he brain, so that I am in the 'reality' sptectrum. Somehow, accepting reality looms larger with me than being hopeful.

diane b said...

This is a hard one. i think your decision is the right one. If he needs to be monitored every hour, it is high care and too much for you or even one person. It is a horrible decision to make but the most sensible one. I had similar feelings when I had to put mum into a nursing home.

brattcat said...

julie, i'm reaching out to you. i also feel you are smart to know what you can and can't handle. taking care of barry 24/7 will be emotionally and physically exhausting for any caregiver. you and ross wisely understand the depth and breadth of the water and your ability to keep afloat. you must find a way to manage barry's care without drowning yourself in the process.

Dutchcloggie said...

Having been a home carer for all of 3 days now, I have learned a lot about strokes already. 3 of my clients are elderly people who have had strokes. All of them failed to do proper rehab (either because they could not be bothered or did not have enoughhelp). In all those 3 cases, their recovery would have been much much better if they had done their physical and speech exercises. If you can not see a big improvement now, this does not mean the improvement won't be there in the future.

Think of it as a person who takes up running with the aim of running a marathon. After a month of a strict regime, there is still no way they are ready to run that marathon. Indeed, they might never be able to, even if they do stick with it. But what is certain is that if they stop training because they feel they are not reaching the goal fast enough, all progress they have made will be lost again and they will be right back where they started but with a dented confidence to boot....

Hmmm... Not sure this comparison works.....but you get the point I hope.

Also, you may have different expectations of what 'recovery' will mean than Ross. Unless you define what goal you want to reach, how can you know how much further there is to go? Is recovery that Barry can live on his own again? Or is it that he can talk and communicate normally again. Or at least communicate in some meaningful way?


Julie said...

Ah, thanks for this, Marieke. Your analogy does, indeed, work.

My aim for Barry may be different from Ross' aim. However, I do not want him to live by himself again. More to the point, I do not want him to live on the farm again. But I do believe that the doctors are advising that he should not drive again (and like me, if he does he is not insured). I want him to live with a group of others. At the moment he cannot go to the shop ad buy an ice-cream. They walk him there, there show him how to do the transaction, and they walk him back. Depending, on how this next week transpires, we have both physical exercises and speech therapy lined up.

I will see Baz Mon/Tues so I will be able to assess him and do a mental comparison with what Ross has relayed to me.

I reckon that domicillary carer job will be a good match with your skills and empathy. I realise that the money is not much, but it will meld in well with your studies, etc.

Joan Elizabeth said...

These things are very difficult and stressful. I am confident you will figure out a good solution. Thanks for the update.

freefalling said...

It's really hard when family live far away.
If he was close by being cared for, like your Dad was then you'd probably feel better coz you could see him regularly.
But he wouldn't want to move to the city, would he? Plus I reckon in a smaller community you get better care.
It's something I've observed in Ararat.
We had a big, big mental hospital here that closed and many people were absorbed into the community - in the city they would have got lost but here everyone knows them and looks out for them. They are an integral part of our community and lead interactive lives rather than living in isolation or segregation.
Anyway, what are your choices, move to Wauchope? No, can't leave the kids and Alannah.
Move Barry in with you in Sydney?
From what I can gather he loves the area in which he lives and would probably find adjusting to a big city an unnecessary strain.
And really, they are your only choices aren't they (if you want to go another way, other than the one you have).
And who is to say he isn't perfectly happy in the "place" he finds himself now.
"The very injury that he has suffers, stops him from understanding the injury he has suffered." - a blessing in disguise.

Julie said...

I think I might agree with you re the attention in a smaller community. I am keeping my options open. If I find the trip personally onerous, and if his friends in the area cease visiting hi, then I will reassess his care facilty at the end of 2012. If this is the case, I will look to bring him, say, down to the Central Coast. This can be 'rural' if I choose carefully, and will be within the CityRail area where I can get a $2.50 return trip which I can complete within the same day, and reduce the cost (no overnight in a motel) and the wear'n'tear. All in the future, as yet.

I travel up to Wauchope again tomorrow arvo to help him walk down to the nursing home on Tuesday morning. Lots to do ...

I agree that his mental collapse is a blessing in disguise. At this stage, at any rate.

Shall post again toward the end of next week, when I feel up to it.