Saturday, December 10, 2011

Breaking the News — Done and Survived


‘I don’t think we need to tell everyone,’ he said.

‘I think I have to tell the family,’ I said. ‘Your kids need to know. I feel a responsibility towards them.’

‘Well OK, but don’t make a big deal of it.’

‘I won’t have to. They already know something’s going on with you. It’s not going to come as any great surprise.’

‘But I don’t know how to explain it to them! What will I say?’

‘That’s all right; I can do it. We just need to say that you’ve been diagnosed with Alzheimer’s, it’s in the ‘mild to moderate’ stage, and you’re now on medication to stop it getting any worse and maybe even make it a bit better. Just the simple facts.’

So that’s what we did, contacting extended family, including some close friends who count as family, by email.

I also put it to him that we need to inform any medical people we deal with. He agreed, so I told the chiropractor when we had our session yesterday. Good move — he informed us that Vitamin B12 can help with this condition. I’ll have to double-check with our doctor that it won’t disrupt the carefully balanced cocktail of tablets which Dear Husband is already taking, but I imagine it will be fine.

DH himself suggested we should tell the writers’ group. When the time came, yesterday afternoon, I asked, ‘Shall I tell them or will you?’ He gave me the job, so I trotted out the same factual statement, in the form of: ‘There’s bad news and good news.’  To the good news I added the fact that the specialist, while advising, ‘Do what’s easy; do what you can’ in regard to writing, also strongly recommended that D H continue to attend the writers’ group. 

‘Oh yes!’ they said. ‘We love you, and we’d miss you if you didn’t.’

I must say, it is a relief to me to have things more out in the open, particularly in that group, which we attend weekly. DH is not obviously ga-ga or anything; to most his condition must seem like the normal mild forgetfulness of ageing. Only I, who live with him, experience all the Mother-and-Son* moments, either farcical or alarming. 

One group member who is a health professional has let me know privately that she is aware of what we’ve been coping with; her quiet understanding has meant much in recent months. Others didn’t really get it when I tried to suggest, discreetly, that DH might not be up to some of the writing they would like to see him do, such as completing an unfinished novel. And when I stepped in to do practical things for him such as opening a document on his laptop instead of leaving him to struggle fruitlessly, I felt (rightly or wrongly) that they thought I was being controlling and over-anxious. Now they can have more realistic expectations. 

Meanwhile he has gone back to using pen and paper, leaving the laptop at home. He actually wrote yesterday, producing a very good response to one of our exercises. This has not happened for quite some time; we got used to him saying, ‘Pass’ instead of reading anything out — because there wasn’t anything to read. Can this revival  be due to the new tablet already? Or is it because of the energy release in no longer withholding something?

*A popular Australian TV sitcom of the eighties and nineties, oft repeated, in which an adult son cares for his mother who suffers early dementia.


Thursday, December 8, 2011

Diagnosis: Alzheimer's

We had our second visit to Dr K, the geriatric specialist, and now have a more specific diagnosis: Alzheimer’s (the most common form of dementia) in the ‘mild to moderate’ stage. Which pretty much confirms what we already thought. Dr K prescribed some medication that slows the progress of the disease; he said it will stop things getting worse, and they may even get somewhat better. In three months we go back so he can check how it’s working.

Meanwhile we have now had visits from the Aged Care Assessment team, an Occupational Therapist, Community Options (for a second time, following up on the first), Tweed Respite Care, and while we were out yesterday there was a phone call from a Community Nurse. So it’s all under way, but the wheels turn slowly, and probably nothing will actually happen until after xmas. Which is fine by us, as we’ll be happily busy with xmas visitors and socialising.

Dr K gave us some documents about the condition, the medication, what resources are available (most of which we already know) and so on. He read out to us a list (‘These would be a recipe for a happy marriage even if you didn’t have Azheimer’s,’ he said):


THE 10 ABSOLUTES OF CAREGIVING FOR ALZHEIMER’S PATIENTS

never ARGUE, instead, AGREE.

never REASON, instead, DIVERT.

never SHAME, instead, DISTRACT.

never LECTURE, instead, REASSURE.

never say, “REMEMBER”, instead, REMINISCE.

never say, “I TOLD YOU”, instead, REPEAT.

never say, “YOU CAN’T”, instead, say, “DO WHAT YOU CAN.”

never COMMAND OR DEMAND, instead, ASK or MODEL.

never CONDESCEND, instead, ENCOURAGE and PRAISE.

never FORCE, instead, REINFORCE.

We had a bit of a giggle as soon as we were alone. We’ve always been able to laugh at ourselves and our interactions. (Now, THAT, if you like, is a big help to a happy marriage.)

‘I do all the things on that list that I shouldn’t,’ I said.

‘Yes,’ he said, ‘I noticed.’ And we giggled some more.

But then we had a look at the written version and agreed that I don’t shame, command, demand, condescend or force. The others ... hmmm. But now that I have a list of what to do and what not to do, it will be simpler. There are times when it’s a wonderful thing to be given instructions.

Anxiety

Some possible symptoms, such as aggressiveness, he simply doesn’t have. He can get a bit frustrated at times and therefore snappy — so can I — but that’s all. Sometimes, though, he does get anxious. One thing the literature mentions in this connection is the need for a familiar environment.

A couple of mornings ago, when we awoke, he told me that he’d had a scary experience in the night, when some strange men knocked on the door and informed him: ‘We’ve come to shift you!’ They were big blokes, he said. He refused and called the police, but the police said, ‘You have to go.’ He didn’t remember how he managed to avoid it, but was relieved to find we were still here and not in some strange new abode. When I said it must have been a dream, he understood that, but for some time kept speaking of it — with horror — as if it had really happened.

That day I had said, in my frustration with our poor internet access, ‘This is ridiculous; we’ll just have to move house.’ Big mistake, obviously. I won’t be saying that again!

(In truth, neither of us wants to move from here. The cats always demand breakfast at 5am. In future I’ll accommodate them, and use the internet in the early mornings when no-one else is overloading the network. It’ll work if I get to bed at a decent hour.)

At present

He has very good days. Many people don’t pick up his condition in conversing with him; if anything, would probably just think him mildly forgetful as with natural ageing. 

His worst frustration is the cognitive memory loss: the need for help with practical things such as computer operations, which he used to know perfectly well. And if he makes a cup of coffee, he’s liable to try and brew it in the cup rather than a plunger. I’ve discreetly taken over most of the practical tasks.

It does bother him that he can’t really organise a piece of writing any more. Oftentimes he deludes himself that he is writing every day. He’s not! At best he’s puddling about and messing up stuff already written. (Don’t worry; I have copies!) He was clear about it, though, when we saw the specialist, and took the opportunity to ask what he should do about it. Dr K said, ‘Do what you can. Do what’s easy for you.’ He added, ‘It’s good to keep up activities and interests like that, which stimulate your mind.’ I’m glad of this clarification myself — it confirms me in continuing to take him to the writers’ group. He seldom does any actual writing there now but can still enjoy the discussions, and his contributions are valued.

Sunday, November 27, 2011

This Saturday He's Not in Hospital!

Last weekend, just after I wrote my Six Word Saturday piece (at my SnakyPoet blog) Himself came to me and said, ‘I think I need to go to the hospital.’ He had been cold all night — a very warm night — and was still cold although the temperature in the house was 28ÂșC. He had what he described as ‘tightness’ in his chest. He was very pale.

I took him to Emergency. They agreed he should be there and hooked him up to monitors. The chest pain came and went intermittently. Eventually they sent him to the High Dependency Unit, where he continued to be monitored constantly.

Our local hospital is only ten minutes away by car, so I popped in twice a day to see him. I took the weekend papers and we sat and read them together, companionably, and chatted. At first he liked the new food and all the attention, and the comfortable room with a lovely view. But then he began to get bored and cranky. A good sign, I thought.

Sure enough, the tests indicated nothing wrong with his heart after all, so they sent him home on Monday. They don’t know what caused his symptoms, but suggested maybe it was a gastric problem.

There have been no further symptoms. Nonetheless it confronted us all over again with the probability that he will die before me. Recently we had documents drawn up to give me power of attorney for him if and when need arises, plus enduring guardianship for such decisions as health matters. Now I’ve left a copy of the latter with our doctor, and I have one to take with me next time he needs to go to hospital (which he has needed several times in the last two years, usually with more serious symptoms). Good to have it on file in both places, I think.

I tend to feel mildly guilty that I often stay up later than him, particularly as it is frequently the only time I can get decent internet access. I think I SHOULD be spending the time with him, as I won’t have him forever, and when he goes I’ll regret all the togetherness we missed out on — though in fact we have an unusually large amount of togetherness, and my greatest need is ‘me time’. The other evening, as he said good night and went happily off to embrace sleep while I got stuck into emails and facebook, it dawned on me that perhaps it’s a good thing that we spend some time apart. (Well, I am always looking to see what are the benefits in our atrocious internet situation!) It occurred to me that, given the approaching separation — not only through inevitable death but perhaps through his increasing dementia, which oftentimes has me feeling lonely even in his company — perhaps the Universe is kindly providing a little advance practice in detachment?

Sunday, October 16, 2011

Geriatric Specialist

On September 28 we saw the geriatric specialist, Dr. K. We were very impressed with what a lovely bloke he is, his respectful attitude towards his patients, and the clear, straightforward way he explained things. He did various tests and confirmed that my darling does have a degree of forgetfulness that suggests dementia. 'Don't be frightened of that word,' he said. 'It's only Latin for imperfect memory. It's not a disease, it's a syndrome.' He ordered further tests to determine what is causing it, i.e. what type of dementia it is. Apparently all types are treatable, Alzheimer's most of all! Those tests have now been performed, but we can't get in for our follow-up consultation until early December — he's very busy! However we now have enough information to schedule a visit from the Aged Care Assessment Team, so that we can then get any services we need. They will be phoning this week for an appointment to come and see us.

I am hugely relieved that Dr K confirmed Dear Husband should definitely not drive now; he would be a serious danger to himself and others. He hasn't driven for at least 12 months, except for a short try of our new car on a quiet road because he wanted to check it out. When our licences recently came up for renewal, at first he said, 'I don't think I'll bother,' then he started thinking he'd like to be able to spontaneously go for short outings on his own. I persuaded him to wait until we could ask Dr K. As I reminded him, it's not only the driving — he needs help getting in and out of the car, and getting his wheely walker in and out. I also explained that it needn't mean the loss of his independence. I'm usually available to drive him places, and if not he has his taxi vouchers. But anyway I'm truly thankful it has turned out like this. Saves all the worrying and wondering.

Since then he has surrendered his licence, and we were pleasantly surprised when the Road Traffic Authority offered him a ‘photo ID’. This serves for all those occasions when we use a driver’s licence to identify ourselves. It looks quite like a licence except for the colour (a nice greeny-blue) but of course doesn’t allow him to drive. I feel it preserves not only convenience but dignity. It seemed to soften the blow of losing that piece of his independence.

Dr K also confirmed what I have been thinking (and acting on) — I can't leave him home alone for long. Even though he hasn't had a fall for some months, he is a fall risk. This is due not only to his arthritis and peripheral neuropathy (nerve condition of the legs) but also poor balance, which may be related to what's going on in his brain. He is very unsteady on his legs. The ACAT people will help organise respite as required, so I can get out of the house when I need to. At present I can duck out for a 20-minute walk or a quick trip to the shops to pick up his medication, staying in touch by mobile phone, but I can foresee a time when even that won’t be possible.

The other news is that an occupational therapist came and looked at our unit and recommended some modifications, and the Housing Department is doing them in about three weeks. (The OT thought it might take them 6 months!) They can't do anything about our front steps, but they can make the back steps easier for him to get in and out of the house that way, and they are putting in some more safety rails in various places.

I recently made sure our Wills, Powers of Attorney and Guardianship were updated. (Basically the same as the previous ones we had, in a bit more detail and with things like home address and spelling of some names corrected.) DH hasn't yet been diagnosed as unfit to manage his affairs, and I don't expect any such diagnosis at this stage. He has some loss of cognitive function (practical tasks) but is perfectly clear on such things as what he wants left to whom (of the vast fortune, you understand!).  However I thought it best to get it all organised while that's still the case. After seeing the specialist, I'm very hopeful it may never stop being the case! We are both feeling very positive now.

He is still very engaged with life, love, and writing. He has another children's story ready to go as soon as his secretary (me!) formats it for ebook publication. He has his adult novel, Salt, nearly finished, and is still compiling material for his autobiography.

Although it was time to get this check-up, and time for clarity about what is going on with him, we haven't given up on him. As well as whatever treatment Dr K might suggest when we see him in December, we are excited by the results we're getting with our new T.E.N.S. machine, and with the Genome Healing techniques we learned earlier in the year.

The machine was a godsend. He had been bed-ridden with pain for some weeks, when, on one of my quick forays to the shops, I walked past a pharmacy and saw the sign: PAIN RELIEF, ENQUIRE WITHIN. So of course I did. We had heard of the T.E.N.S. machine before, but only in a large verson usually bought by institutions. Even at a discount, the price to individuals was $1,000. Now here it was, the size of a mobile phone, for $200. $50 extra bought some special shoes to use with it to help circulation in the legs, which is one of his problems.

‘How can I pay it off and take it home right now?’ I asked.

‘Simple,’ said the shop owner. ‘We’ll open an account for you.’

It hasn’t cured the problem but he is now pain-free for longer periods, and much more mobile than he was. He seldom needs his walker to get around the house now, and can even do without it when we’re out so long as he only needs to go short distances.

He has the occasional weird moment, like asking how to insert the paper into his laptop so as to type on it (!) or deciding — and fortunately forgetting soon afterwards — to start training for the ministry. Mostly he’s lucid, and even quite sharp, just forgetful of names and practical procedures, and needing to be told things a few times. In some ways he’s childlike, but we’ve always enjoyed being childish with each other, so we continue to laugh about it. I do get exasperated and impatient at times, but I’m quick to catch myself and change it.

‘Does he get moody?’ the specialist asked. He does get snappy at times, for no good reason that I can see — but mostly, with age he just gets sweeter.

Saturday, August 13, 2011

Backwards and Forwards

One day recently he kept telling me of his delight that we’re now living together permanently. (We’ve been doing so for eighteen and a half years now.)

Another day his daughter phoned and had a lovely long chat with each of us. Some hours later, he asked, ‘Has C. gone?‘ as if she’d been visiting in person. Shortly afterwards he suggested we ask her to come over one night. She lives a long way away, interstate.

These episodes were not related to high blood sugar. I know, because I monitor his blood sugar twice a day. The doctor says that in that case they’re likely to happen more often.

But he’s taken a turn for the better. So much so that I said to him with a smile, ‘You know, not long ago you were telling me how glad you were that we’re living together now.’

‘So?’ he demanded, unsmiling.

‘Darling,’ I said, ‘We’ve been doing that for 18 years.’

‘Is it really so long?’ he said. So I guess I can’t be sure what he remembers.

This phase is pleasant, though. He has pain sometimes, but we’ve learned how to minimise it as much as possible and he is able to be somewhat more active. And in most ways he’s perfectly lucid. We laugh and talk and love. There is joy and sweetness.

In practical terms, I’m confident to go out for a twenty-minute walk, or a quick drive to the nearest shop, without being too anxious for his safety. He’s even resumed coming to the writers’ group, which means I have too. I was able to buy him a second-hand laptop, because only a couple of weeks ago he was almost bed-ridden. He hasn’t used it in bed yet, but even though he is still learning its peculiarities, he loves being able to take it to writers’ group.

So tomorrow we have a woman from the Council coming to talk to us to see what we need — just at the point when he’s so much better and I’m consequently so much more relaxed. However I don’t wish him back where he was. I’m only too glad for the improvement, and hope it lasts a long time. We are certainly getting all the help we can to make it last, from both orthodox and complementary medicine, as well as prayer.

I was thinking of trying to get respite for five hours a week, or if need be a fortnight, so I could go to writers’ group without him. The group said that if it was fortnightly they’d keep meeting weekly, and take it in turns to act as facilitator on my ‘off’ days. Now we’re back to where we were — there will be odd days when I cancel at short notice, and who takes the group will be the first person I can reach by phone. That’s OK, it’s been working fine for quite a while now. So maybe I’ll think about some other regular ‘time off’ just for me, and about what I might do then. Meet a girlfriend for coffee, perhaps, or go back to Tai Chi.

Friday, July 29, 2011

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!’

Sunday, July 24, 2011

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?'

Monday, July 18, 2011

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.