The month began with his exhibiting bizarre episodes of confusion between bouts of lucidity. To recap: He became obsessed with an ‘assignment’. I thought he meant completing a story for the WordsFlow Writers’ Group, from which I had actually withdrawn him as it had become far too tiring for him and in any case he was barely participating any more. But he started saying that our unit was too small and we didn’t have the right equipment. I eventually realised from some things he said that he was talking about old-fashioned typesetting and layout prior to the digital age. He used to do that, and in fact was very good at it. I told him that it’s all done on computers nowadays. He snorted with contempt, and said that if ‘they’ wanted it done, they would have to settle for it being done properly.
I asked who ‘they’ were.
‘Oh, you know. Those clowns who ordered this.’
I didn’t pursue that any further. Ask him to explain something and he just gets angry with me for not understanding already. I guess the explanation isn’t there for him to find. It must be frustrating when he goes looking for it.
He had been taking all sorts of papers from his office, spreading them out over the bed and sorting through them — to what purpose I couldn’t discern. He had asked me to buy him some manila folders, which I did, thinking he wanted them so as to sort the stuff into categories. One night after dinner he brought me some cuttings from old news magazines, and laid them out on an open manila folder. He asked how they looked together. They were unrelated in subject matter, but I remarked truthfully that the colours went well together.
‘We’ll have to put the text down there,’ he said, indicating. The conversation was somewhat disjointed, with me piecing it together bit by bit, but I went along with him as best I could, and he ended by saying, 'I think we need to get together about twenty people and hand them each a copy. We need to show them what we can do.’ I realised that in his mind he was to some extent back at Kiplings, the business he founded in Melbourne to produce newsletters for other kinds of businesses. And he was partly here with me as well.
That was the most striking indication that his mental state was deteriorating despite the medication. There were others too. But what kept him pretty much living in the bedroom by then, except for meals and trips to the bathroom, was (a) his extreme tiredness much of the time and (b) the excruciating pain in his legs from the peripheral neuropathy. Nothing we did to relieve that pain was working any more. The doctor — always cautious because he is on so many tablets — finally prescribed yet another drug specifically for the nerves. That seems to be working now but took a little while to show any effects.
He could still have a shower unaided, but I supervised. It got to the stage of needing to help him dry and dress himself. I also began shaving him, and reminding him every day to clean his teeth. He himself noticed in a lucid moment that his bottom teeth had become decayed and discoloured. (His upper teeth are dentures.) He says they aren’t hurting yet, but obviously they will if left unattended. Our doctor is now putting him on the ‘dental care’ scheme.
He was also suffering from a very painful right shoulder, which we thought must be arthritis. But it got so bad, we saw the doctor and got a referral for an ultrasound. This was duly done at the local radiology clinic, and they found bursitis. They made another appointment for him to go back and have a cortisone injection guided by ultrasound. That was to happen on a Friday. I phoned and asked could it be sooner as he was in such pain. They made it for Wednesday.
He was dressed and ready to go; I was in the bathroom combing my hair. Suddenly I heard him yelling for me. I raced out, and found him outside our back door, collapsed on to an outdoor chair which was half collapsed under him, one leg digging far into the ground. He always needs help to get up and down the back steps (though they have been modified for him as much as possible) but he decided this time he could manage on his own instead of waiting for me. Apparently such ‘impulsive’ behaviour is typical of Alzheimer’s, so I have now been told. He had pushed his walker down ahead of him even though I always take it down first and then help him down while he grips the strong rail the Housing Department installed.
I thought he had tripped, but when I went to try and help him stand, he said his legs had given way and he couldn’t make them work.
‘Yes you can!’ I insisted, and somehow pushed and pulled him to his feet. ‘Take your walker and go back into the house.’ He got a few steps, then collapsed again and I couldn’t hold him up. This time a large potplant outside our back door — our jade bush, there for luck — broke his fall. (The pot will never be the same again.) So he didn’t injure himself either time; that’s something.
I don’t know how I got him into the house and onto the bed but somehow I did. Then I called the ambulance. That was Wednesday morning. I did remember to cancel his appointment for the injection, deferring it to the Friday after all.
They ran all sorts of tests and decided it may have been due to his heart racing just before the fall, as it did that in one of the tests. The doctor prescribed some medication for that and he was discharged Thursday evening.
‘How wonderful to be in my own bed in my own home,’ he said.
Meanwhile I had shifted furniture in the unit, so he would be in no danger of grabbing flimsy things that wouldn’t support him. I was always warning him about that. It seemed better to remove the possibility.
Friday morning he felt great. I was tempted to come back to bed with him and read companionably together. But he had a routine chiropractic appointment and decided to keep it as he felt so good. It seemed a sensible thing to do after those falls. That went OK. The chiro actually found me in worse condition (due to stress, he said).
When we came home, instead of parking right outside the garage (which is not used as a garage) so he could go through to the back door, I said, ‘Do you think you could manage this little bit of driveway if I park in front of the house?’ I had some idea that he should exercise his legs. He said yes, but it was obviously a bit of an effort. Then, just outside the back door, his legs gave way again. Somehow, with the help of the rail and his walker, I got him up the steps and in the door. Lucky about that furniture shifting; there was now a firm, low bookshelf inside the door, which I had him lean on while I eased him gently to the floor. Then I put a pillow under his head and called the ambulance again.
This time he stayed there ten days.
The doctor who admitted him for the second time consulted by phone with our GP, then faced me with some confronting ideas. In hindsight I’m glad she did. In essence it was, ‘You’ve done a wonderful job, but he now needs more care than you can give him. It’s dangerous to keep him at home. He could injure himself next time, or you could hurt yourself trying to help him.’
Having him away from home gave me space to realise how much I was doing for him, how exhausted I was, and what a struggle it had become for both of us.
The aged care nurse attached to the hospital assessed him as needing ‘high care’. His daughter came up from down south (interstate, half way across the country) and helped me choose the nursing home. He is there on temporary respite at first, for which he was already authorised. The paperwork is going through to make it permanent. Resources available to help me keep him at home just didn't address the problems any more.
I did eventually have that conversation with him in hospital. He cuddled and comforted me as I cried, saying, “It’ll be all right. You have to do what’s good for you.’ Next night he too was struck with grief, and we both cried — and then laughed at ourselves for it.
Then he was transferred, four days ago, and has mostly hated it ever since, even though I’m there as often as I can be, and it’s a lovely place with wonderful staff.
As for me, it becomes more and more evident to me that I could no longer cope with having him at home, much as I long to.
When I am with him, I take it moment by moment. He is moody, and goes in and out of lucidity. He insists on being taken home, and assures me his legs are strong and the fall risk is ‘bullshit’. Then he complains of tiredness and pain and thinks he’ll go to bed now.
The nursing home is only three minutes’ drive away! Practically just around the corner. I sometimes have meals there with him. We watch a bit of TV. I take my mending. Yesterday morning I took my laptop and we watched a DVD. I try to kid myself it’s ‘homey’.
This massive change in our lives seemed sudden to us, but our doctor tells me that his repeated hospitalisations over the last year or so were a sign of decline.
When I’m at home, I cry a lot.