At Last — Action!

Suddenly we’re into the next phase — the ‘can’t be left alone’ phase.

The Body

Dear Husband’s leg pain is peripheral neuropathy after all; a doctor explained that the other Latin term which I can’t get my brain around is actually part of peripheral neuropathy. Between that and the worsening arthritis in his lower back, he’s been in agony. These past two weeks he could hardly get about without help, and even then only slowly and awkwardly. His urine test came back clear, so we can’t blame infection.

Having exhausted other possibilities, the doctor suggested capsicum cream, which can be bought over the counter at the pharmacy. It has a burning sensation on the skin, and that seems to trick the nerves into thinking that they are not hurting. It’s working, too! Panadol Osteo and a hot water bottle help with the back.

Meanwhile, I’ve not been able to go to writers’ group for the last two weeks, because he’s been in too much discomfort to go, and I couldn’t leave him here helpless on his own. Home Care, which offers respite as well as domestic help, didn’t have the hours available to meet our needs; friends willing in principle to help were otherwise occupied. But I’m the facilitator of the writers’ group, so the Manager of the Neighbourhood Centre (where it’s held) suggested some organisations I could phone to try and get respite care.

Those who have been following this sorry saga for some time will know that this has been suggested before by concerned people. The reality has been exceedingly frustrating. A number of times, trying to get aged care assessment, I’ve been fobbed off to other phone numbers including the dementia line and a geriatric specialist. It’s all dragged on for months.

This time I rang Community Options at the shire council, and explained my current need: someone to sit with DH on Friday afternoons during school terms. They asked a few pertinent questions and remarked how stressed I sounded. (And here I thought I was sounding calm and businesslike — but have certainly felt very stressed.) She said we were eligible for help, and gave me an emergency phone number just in case. There was to be a meeting today (Friday), she will contact me Monday and talk to DH also to make sure it’s what he wants, then we’ll be assigned a Case Manager who will come and see us and find out exactly what we need.

At last, at last!

And NOW, with all that in place, we finally get the phone call from the geriatric specialist to make an appointment ... late in September. Ah well, it’s no doubt worth doing. And, exceptional among specialists, he bulk bills! I won’t have to save like crazy or borrow from the kids.

The Mind

The fog still shifts and wavers. His blood sugar is fairly stable and/or quickly corrected now that he’s on insulin, so it must be due to ageing.

He needs to double and triple check things, or sometimes asks as if for the first time. Obviously, in his experience, it is.

Or he’ll be in fantasy.

‘When are the kids coming?’ he asks suddenly, anxiously.

‘What kids?’ I say.

‘You know; our kids‘ — and names his older son, his daughter, and older son’s three little girls.

‘They’re not coming,’ I say. ‘There’s no arrangement for them to come.’

He looks sheepish and says, ‘I wonder where I got that from?’

‘I don’t know. There’s been no mention of them visiting.’

He looks at me in outrage.

‘You’ve been talking about it for weeks!’

Health Improvements

Surprise! I don't have a hernia after all, as shown by the latest scan. And Dear Husband doesn't have peripheral neuropathy. They're still trying to work out what he does have.

I am almost better from my symptoms. He isn't, by a long shot, but has experienced some temporary relief. We are putting both these improvements down to various kinds of complementary healing we've been trying. The details are on my Cronewyze blog (for magickal and energy matters) under the heading, 'Healing Miracles or Medical Mysteries?'

Where we are now

(after nine months since previous post) —

We’ve been in our new home 18 months now, and we love it. It’s convenient to the blood test lab, the x-ray place, the doctor, the hospital, and even the vet. Our writers’ group is only half an hour’s drive away, and most of our friends are even closer than they were. We like the quiet of our leafy cul-de-sac and we like the views of the mountains.

I have household help from Home Care: one and a half hours once a fortnight. Doesn’t sound like much but it’s actually a big help — frees me up to look after the Dear Husband, which can be time-consuming.

Him

He’s on insulin now, after a recent hospital stay for high blood sugar. I give him a daily injection and take his blood sugar twice a day. The idea of all those needles freaked me out, but the diabetic nurse trained me while he was still in hospital and the hospital nurses supervised me for a couple of days before he came home. The equipment is efficient and easy to use, and there’s nothing yucky about any of it after all. He’s a lot better since he’s been on the insulin; his blood sugar’s more stable and he doesn’t go into such wild mental confusion.

He does still have problems with short term memory, and with practical tasks such as computer operations he once knew well. Doesn’t matter how many times I show him, he can’t retain it, and so I just do it for him.

His legs hurt like hell most of the time. He has arthritis and also peripheral neuropathy (painful nerve endings), a side effect of the diabetes. He mostly uses a wheely walker when we’re out, and even sometimes around the house. He can’t do much any more in the way of housework, and odd jobs or gardening are out of the question. Most things fall to me; for some I buy help. We have a brilliant and affordable handyman.

He gets very tired very often and needs a lot more rest.

The doctor monitors him closely. And we’re working with Genome Healing which our friend and teacher, Carol, went to Russia to learn. We did her first course and attend practice sessions most weekends. It’s not an instant cure; you have to persist with it. I find it powerful; Andrew feels the effects too, but for him they don’t last long — yet.

Becoming homebodies

I leave him alone less and less. It depends how he is whether I go out at all. If he’s in bed and I have to duck out to the shops for a quick errand, I set him up with the phone handy and leave my mobile switched on. Longer errands I arrange to do in conjunction with taking him to the doctor or for his regular blood tests. 

We’re waiting on an appointment with the geriatric specialist, the first step in assessing him to see whether we’re eligible for occasional respite care. (The care for him, the respite for me.) Meanwhile, there are friends and neighbours who will come and sit with him if need be.

We don’t go out to the movies any more; much easer to see them at home. How glad I am we lashed out and bought that nice big flat screen digital TV when it was on sale! (Well, big enough for our space.) Yes, we are panting to see the latest Pirates of the Caribbean and Harry Potter movies — but don’t anyone make with the spoilers, please, as we’ll be waiting until they’re on DVD.

We signed up to Austar pay TV. They had a good deal going, and I thought it would be great for those moments when he’s bored and there’s nothing decent on free-to-air telly. It’s been a bit of a disappointment so far. I guess we’re just fussy viewers. But we’re novices yet, and are starting to find interesting programs.

Problems of my own

I had pneumonia while he was in hospital; got over it quick because I was able to focus on me. Put myself to bed, did lots of Reiki, and sent other friends to visit him for a few days until I was better. 

Now it appears I have a hernia: part of the abdomen pushing up into the left lung, causing breathlessness after only mild exertion. I may need an operation, but so far it seems to be responding well to other options. 

All this made me find out what to do about Dear Husband if I should have to go into hospital or something. Probably his daughter could come from interstate to stay awhile, and she would if possible. Otherwise, respite care would be available. 

Summing up

So we’ve had our dramas, but many things have stabilised. There are everyday trials, worries and irritations, but overall we’ve adjusted and learned to cope.

Small Stones and Boomerangs

He writes pieces of memory. He writes ideas. He makes things up. ‘That’s fiction!’ I protest. He says it doesn’t matter.

It doesn’t matter, for the writing. He writes beautifully always. I love his writing. But these things he writes are not ‘small stones’; they don’t come from paying attention to the world around him here and now, from being in the present moment. He is trying to write small stones for this month of July — it was his idea — and for the most part he can’t, no matter how I explain or what I suggest. I begin to think he is unable to pay attention.

His youngest, last visit, yelled at him: ‘Get out of your head! Listen to someone else for a change! I was trying to tell you something important and you didn’t even hear me. You’ve gone straight back to talking about you. I hate the way you do that! I had it all through my childhood, and you still haven’t changed.’

I’ve had it all through my marriage to him. I’ve said much the same to him, often, though with exasperation rather than rage. He is hurt and puzzled by such remarks. He doesn’t know what I’m talking about, just as he couldn’t understand why his son yelled at him that time.

It’s the same when I tell him that a small stone is a moment of paying attention, that it’s about looking (or listening) outside yourself, of finding something to wonder at in the physical world. He just can’t seem to grasp it. I am horrified, thinking that, at 82 years old already, he might go through his whole life without ever experiencing that wonder, without ever letting the wonderful world pour in.

This can’t be true. He watches wildlife programs on television with rapt delight. Every time we go out our door and it’s a clear day, he wants to go back and grab the camera to photograph Mt Warning from the end of our street, even though he knows by now we can’t get a good shot from here because the light is always wrong. He has taken many photos of the mountain from other vantage points. This is not a man impervious to the natural world.

And yet, when I say, ‘Look around. Find something, anything, and just describe it,’ he says he can’t think of anything.

‘It’s not a matter of thinking,’ I say, ‘It’s about seeing. What about those boomerangs on the TV?’ (We are watching an episode of Collectors. A man who collects boomerangs is talking about them and showing them off. Wonderful shapes and colours.)

Inspired, he writes in his notebook, then reads it to me. It’s a memory of watching the boomerang throwers at the Show when he was a little boy. It’s lovely, but he hasn’t even mentioned what he is seeing or hearing on the TV.

‘I love it,’ I say. ‘But it’s something for your memoir. It’s a memory. You need something in the here and now to inspire you.’ I look around the room and see a photo of him and me with our god-daughter Flo, when she was just a new baby. We bend our heads over her, cradling her lovingly. That’ll do it, I think. He adores Flo. ‘Write about this photo.’

He writes. He reads it out. ‘In the photo,’ he begins, ‘I am surrounded by little Aboriginal children. They are holding boomerangs....’