Wednesday, July 18, 2012

A Recent Excerpt From My Personal Journal

As his carer, I am someone I never dreamed I could be. This is to do with his specific combination of physical and mental impairment, and the point they have reached by now. It was gradual. Bit by bit I have assumed more and more responsibilities. And I've let go of some, such as reminding him how to use his computer. He's pretty much past that now, and it's easier to take dictation and do it for him — easier, but more time-consuming.

Getting him out of the house is like getting a toddler ready for an outing. I have to allow extra time, and sometimes drop or rearrange some plans. If we both manage to arrive places looking vaguely respectable, that'll do. Clean clothes, combed hair....

It surprises me, because in the past I'd have had no faith in my practical abilities to cope.

My desire to look after him, and have his quality of life be as good as possible, has given me the faith that somehow I'd find the ways. And I have.

Now I'm tired, and not as patient as I'd like. I need to be more adaptable, I realised this morning — and instantly understood one reason for my neck pains. I had been thinking 'pain in the neck,' but I suddenly remembered 'stiff-necked', meaning rigid, inflexible, unable to adapt. Aha!

The adaptability needs to be moment by moment. I'm learning! Seeing myself clearly is important too.

He asks me, watching a young Mum dealing with her two lively littlies (we are in doctor's waiting room), 'How would you like to be at that stage again?' At first I say, to this third interruption, 'I just want to write without interruption!' then notice my lack of adaptability in that, and answer his question: 'Not at my time of life; I haven't the energy.' I realise that I have just said something about what is the case, caring for him, but I don't share that with him.

What I have absolute faith in is the depth and strength and certainty of our love for each other no matter what, and despite occasional grumpiness both sides. I know it to my depths; so does he.

Saturday, July 14, 2012

Things Are Getting Better and Better

We had a couple of nightmarish weeks where he had severe shoulder pain (a new one, not the previous bursitis) and was highly delusional. This is much improved due to the following medication tweaks:

1) Risperdal anti-psychotic changed to Olanzapine — no more twisted torso and slurred speech; safe to be used nightly, and does visibly diminish agitation.

2) Lipitor changed to Lipidol — instant cessation of shoulder pain.

3) Lack of shoulder pain removed necessity for Codeine — considerable lessening of delusions.

He still has the occasional mild delusion / confusion such as imagining we're still in the car when we're already in the house; thinking the people we've just visited are staying here with us in another room; believing he must go off to work in an office in town.

Re the latter, he sometimes thinks he must catch a train, as he used to do in Melbourne long ago. (No trains here.) He sometimes suggests that rather than waiting for me to drive him, he'll walk. I have learnt to regard our outdoor steps and his walking difficulties as blessings in disguise — it is not so easy for him to wander off and get lost, as people with Alzheimer's sometimes do.

Mostly, though, he is more like his old self, and quite rational and coherent in most ways. Well, he is not exactly his old self, as I realise when I think back to the dynamic man he used to be, and see how very different our whole lifestyle and interaction have become. The affection and the shared sense of fun are two things still very much present, and the aligned ideas and attitudes on many things. I look back with pleasure to those previous days, yet don't waste time missing them. There are great joys in the present situation too, where we savour the sweetness of small moments and are more assured than ever of our deep love for each other.

He does need a lot of care, however, and my body is feeling the strain. My doctor and chiropractor agree this is a result of stress. If I get sick, we're both in trouble! So we are about to have a little holiday from each other. He is going into a luxurious nursing home called Heritage Lodge, very different from that other place which wasn't right for him. We both went and had a look and talked to the staff, and even sampled the food, and he is quite keen to be there! He will have a room to himself with ensuite, and a fair amount of freedom and autonomy. There's a huge library (as opposed to a tiny one in the other place) and several lounges with TV sets. And again it's only five minutes from home.

Unlike the other, this is a dual high care / low care facility. Although they are aware that he has some physical high care needs, he will be housed in low care, with people he can converse with and activities suitable for him (not entirely mindless!). We were impressed with the level of professionalism, and being treated as equals. Also the fact that the staff didn't appear to be run off their feet.

He will be there a fortnight. The good news is that we're entitled to 63 days (nine weeks) of temporary respite a year without me losing my Carer's Allowance.

I have now found out that his first Aged Care Assessment, authorising the in-home respite we have and the temporary respite he's about to have, is not superseded by the later Assessment authorising permanent residential care. They are concurrent, so both are available to us as needed. That is, we can opt for permanent later if it seems desirable. For now, the present situation answers our needs.

Meanwhile I expect he'll be happy enough at Heritage that I'll be able to have a decent break without feeling I should visit up to three times a day, monitor his medical régime, and be his spokesperson to the nurses!

To be fair, last time he was admitted straight from hospital, barely able to move, into a solely high care facility and, due to a misunderstanding, deemed to be permanent. The staff at Heritage have a much better idea of who he is.

I can and will visit of course, and can even take him on outings, but will also welcome some free time and rest.

The way it's about to be is how everyone urged me to proceed last time — and they were not wrong exactly, but that place just wasn't right for him. As he himself said afterwards, given that it didn't last, it was good to find that out.

It's a nice happenstance that my son David will be visiting from Melbourne for a few days, well timed to assuage any pangs of loneliness I might feel.