He Starts Walking in His Sleep

At least I think that’s what just happened.

We want to watch Downton Abbey tonight, and it goes until 10pm. He likes early, early nights these days, and was already tired after lunch, so I suggested a nap. After a couple of hours he emerged, pushing his walker, saying he had to go outside to fix the train.

I’m not sure if he would have tried to start down the steep front stairs, but I diverted him anyway and assured him there was no train here and nothing that needed fixing.

He then thought our unit was the train. I took him through the rooms, indicating that it’s a home. When I mentioned ‘the back garden out there’ he wanted to go out into it so as to fix the train. That’s his usual entrance and exit anyway, so I helped him do so. We went through the garage-which-isn’t-a-garage (used as a library/consulting room/temple) and down the driveway. By now he wanted to get the car fixed. First he spoke of fixing it himself, then of driving to the garage (meaning service station) to get the mechanics to fix it. 

I persuaded him it didn’t need fixing, and that the mechanics would not be there at this time on a Sunday afternoon anyhow. I suggested a walk up and down the street but he veered around and headed back into the house. I had been saying, from time to time, that I thought he’d had a dream that felt real. At last he himself said, ‘I think I had a dream.’

However, when we got inside he made straight for the bedroom, climbed into bed, and told me he was climbing on to the train. He fell back to sleep. I went around and locked all the doors from the inside. 

I do this every night now, in case he should get up while I’m asleep and go outside. 

('What about fire?' asked a friend. We have a smoke alarm, I keep the keys by my bed, and I also have a secret, quick escape route.)

I tell him casually, ‘I deadlock the doors at night now.’ He shrugs, uninterested.

Early this morning, between 5 and 6, he got up while I slept, had a shower and dried and dressed himself perfectly well — except that he got back into his pyjamas and couldn’t see why, later, he should not stay in them to receive our expected visitors. He did change, though, after asking me what clothes I thought he should wear. 

I have been so pleased with his progress since leaving the nursing home! He has been lucid much more often than not. He resumed reading Somerset Maugham and Hemingway with every sign of pleasure and interest. When our visitors did come today, he conversed normally. Last night we even had an amorous interlude, and I have to say he knew what he was doing!

I have been reminding myself, though, that ‘change is the only constant’ in this situation.

I go to bed much earlier too, these days. I sometimes have a short afternoon nap when he has a long one. I have reintroduced meditation to our lives. (He can sustain it only briefly now, but 5 minutes is better than nothing.) I have dropped the commitments that I’m not passionate about. I can give him more of my time and attention; and my plan is to take very good care of myself so as to care for him.

I guess it’s working. I didn’t stress over his ‘train’ episode, just accompanied him and tried to reassure him, calmly and affectionately. I guess you could say I took it in my stride. It was a bit startling, though!

Don't Believe Everything You're Told

When our friend Flip and I arrived to take my Darling Husband out of the nursing home, I was told the Manager would like a few words.

She said she had no problem with me taking him out, but was concerned about what help and support I would have. I said I had asked to get the assistance package restored that I had before. She told me that would not be possible: I would have lost my authorisation for it by the act of putting him into residential care. 

‘I wish you would have spoken to me first,’ she said, ‘And maybe I could have done something. The package is Government funded; you won’t get it if they aren’t paid to provide it.’ 

‘Well, it was Friday night that I made the decision,’ I said. ‘And you’d left for the weekend. I had to take him out today, to still be in the cooling off period of our agreement.’ 

She waved a hand airily. I knew that if I’d missed the cooling off period I only had to give them a week’s notice — but I also knew that, the rate he was going downhill mentally, another week would have been disastrous for him.

‘You won’t believe me,’ she said, ‘But when you’re not here, he’s fine.’ 

I thought of the Nurse We Already Knew (friend of a friend) who works there, telling me, ‘He looks for you.’ I thought of DH himself begging me repeatedly to take him home from 'this awful place', his extreme boredom, and the lost little boy I sometimes encountered there. 

‘He’s a delight,’ said the Manager. ‘No trouble. He gets a little agitated in the afternoons, but not unpleasant or anything.' (I decided not to mention his remark, after I promised to bring him back home: 'Oh good, I'll be able to yell and scream!')

'You’ve been coming in the mornings, and that’s good. But  then you’ve been coming at night too, and that’s his sundown period, and he’s horrible to you.’

‘He’s not,’ I interrupted her. ‘It’s just that I get distressed.’

‘And we see that, the staff, and we’ve been concerned for you. But really he’s perfectly happy when you’re not here. You’re doing this for you, not him.’

‘Oh, I know I’m doing it for me,’ I said. ‘And for him too. He hasn’t stopped saying, “You’ve got to get me out of here.”’

‘You don’t realise,’ she said, ‘But they all say that.’ (I failed to see how that was meant to be reassuring, but didn’t comment.)

She told me again that she was concerned for me. ‘Where’s the rest of the family? Are they supportive? Will they come up from Melbourne?’

I reminded her that my stepdaughter had come to help me choose the nursing home, and told her the others will come as soon as they can, and meanwhile have offered financial help. 

‘It’s the day-to-day support you’ll need,’ she said. ‘Not only have you lost your authorisation for a package, but the Aged Care Assessment Team might not give it back to you. Once he’s been assessed as needing high care, they’ll be reluctant to go backwards.’

‘I have a friend who’s been an aged care nurse,’ I said, ‘And if need be, he’ll help.’ I was going to add that I would be able to hire him for a small fee, which would work out a lot cheaper than the nursing home, but she didn’t wait to hear that bit.

‘Friends might help for a while,’ she said, ‘But it wears very thin. And you’re still going to have heartbreak. You ARE losing him.’

‘I know it won’t be easy,’ I said. ‘You’re the one who told me, “There’s no easy way with this.”’

‘That’s because I know the progress of the disease. I also told you to get psychological support. Did you do that?’ 

‘Not yet,’ I said.

‘Why not?’

‘Well, my psychologist is down at [town half an hour away] ...’

‘You need the Alzheimer’s Support Group! People who have been through it.’

I nodded meekly and thanked her. (I’m sure it is indeed excellent advice, and will be looking to contact them.)

‘Change is disruptive,’ she said. ‘I know, as you don’t, that the more times this happens, the worse for him.' (In my mind I immediately cancelled any thoughts of taking advantage of temporary respite later. I'll find other ways to look after me.)

'You’ll find that going home now will be another setback for him. You’ll be fine — I’m concerned for his wellbeing.’

I gulped and squared my shoulders,  silently vowing that I would MAKE it work. She suddenly relaxed and smiled.

‘Oh, but you’re a gorgeous thing,’ she said, reaching over to pat my fingers with hers. ‘You’ll be fine. I just want you to be aware.’

I thought, but didn’t say, ‘Don’t you realise I’ve been living with him through all this, long before he came here?’

Finally the interview terminated and I went out to where Flip and DH were waiting with his suitcase.

'What kept you?' said DH. ‘Let’s get out of here!’

***

He has been telling people who phoned to welcome him home, ‘I’m so glad we escaped!’

Later he said, having heard me tell Flip I might not be able to get Government assistance any more, 'I didn't like those threats she made to you before we left.' At the time I didn't see them as threats; in reflection I think he may have been spot on — as he so often is, even now. (I expect she did believe things she said. She cited 30 years of experience, which is not to be dismissed. However I feel she is blinkered in her vision, not realising that she herself has been institutionalised for those 30 years. In any case, some things she told me turned out to be wrong.)

Home was a welcome sight to him, and some aspects were briefly unfamiliar. At first he had to be told which door led to the bedroom and which to the bathroom. But in an hour or so it all fell into place for him again. We slept with our arms around each other and the two cats cuddling up.

He was very lucid last night, and again today — much better than he was in the nursing home. I knew I shouldn’t delay any longer in getting him out of there! 

There have been moments of confusion, moments of forgetfulness, moments of apathy, and he just doesn’t have the intellectual grasp of TV shows that he once did, but this is nothing new. We enjoy being playful and loving. Basically he still has perfect awareness of who he is and where he is. 

There is no great problem about him becoming agitated in the afternoons. That's when he has his nap.

So far there has been no 'yelling and screaming' at any time.

As for the assistance package — one phone call was enough to learn that it is classed as the in-home version of residential 'high care', on a par and not a backward step; that the original assessment we received is still current; and that the package can and will be restored.

‘Are you happy?’ I asked DH last night.

‘No,’ he said, ‘I’m ecstatic.’

Me too.

I’ve Decided To Bring Him Home

On Thursday morning there was a special morning tea at the nursing home because the CEO of the Company was visiting. We were seated next to another published author, a lady who had written a memoir of her youth in India — interesting to me because my Mum grew up there. She ended up lending me a copy of her book. My Dear Husband wasn’t interested; just begged, ‘You’ve got to get me out of here!’ I told him the Manager had promised me he’d soon be moving into his own room, where he could have a TV and his laptop.

‘I don’t want my own room,’ he said. I was surprised. 

‘You want to stay in this one?’ (a shared room).

‘I don’t want to be here at all,’ he growled.

He told me of trying to catch a taxi home, ‘but no bugger would let me’.

On Thursday afternoon I went to the Housing Department and told them the situation, and got yet more forms to fill in. A friend drove me; I was afraid of crying too much to be able to drive. She made cheerful conversation, just what I needed, and I didn’t cry, except briefly when talking to the lady from the Department. Then I came home and sobbed my heart out all night. ‘Am I making the greatest mistake of my life?’ I asked on facebook. Friends reassured me I wasn’t.

One friend privately asked me tough questions, to make sure I wasn’t being self-destructive:

‘Do you really think you can care for him? How will his life improve? How long before you resent giving up everything for him?’ I answered:

‘He would be with me and the cats, especially in bed at night. He would have access to the material for his autobiography, and could continue to play with the idea of writing it. He could phone his kids and old friends. He would feel less disempowered than he does now. He would not be surrounded by a whole lot of people with dementia far more advanced than his own, with whom he can't converse. Instead he would have one-on-one in-home respite carers with interesting conversation about books and movies.

Maybe he's more important to me than the other things! I could still write, blog, network, run WordsFlow, read, exercise, watch TV and DVDs, look after my garden, see my friends.’

She said in that case I should go for it. I was still torn and undecided. After all, when everyone tells you that you’re acting for the best....

Yesterday (Friday) I went to the writers’ group. I am the facilitator, so I thought I’d better get back to it after missing the first two of the term. Everyone was affectionate and welcoming, and we had a pleasant afternoon. 

Then I went and had tea with DH at the nursing home. I knew my friends Al and Mo had visited him that morning. I’d asked Mo, a former social worker and palliative care volunteer, to see what she thought about me taking him back home. He told me he’d had a good visit with them, and added, 

‘Mo said she can’t see any reason why I couldn’t go home.’

‘For a visit or for good?’ I asked.

‘For good.’

I knew this was very likely not what she’d said. (I was correct, as I found out later; she meant visits). Nevertheless I felt huge relief and joy. I told him enthusiastically that I’d organise it right away. He stared at me.

‘At last you agree with me!’

I gave him a hug and assured him there was nothing I’d wanted more. Then I went to find the Admissions Officer but she’d left for the weekend; so had the Manager. The Assistant Manager was still there, and the first thing she asked was, ‘But will you be able to manage?’ 

‘I’ll make certain of it!’ I replied.

‘Well,’ she said, ‘It’s your decision. I’m just writing an email to the Manager now, so I’ll add this. You’ll need to contact the Admissions Officer first thing Monday morning and she’ll sort out all the details with you.’ 

I hope I’m not making her sound unsympathetic. Far from that, she was concerned and understanding. She urged me to take advantage of the temporary respite opportunities and I said I would. Then I went back to him, jubilant. Of course he wanted to leave immediately, so I explained that there were a few things to organise and it’d have to be Monday. (I had already made arrangements to take him home for a lunch visit on Monday.) I felt a lot better than I had the previous night.

I announced it on facebook, and all the people who had previously said I was doing the right thing and had no choice now cheered and applauded! (I understand that they were committed to supporting me whichever way I went.)

This morning when I went to see him, he was still in bed in his pyjamas, and had nodded off over a book. He woke a few minutes later when morning tea arrived, saw me and said, 

‘Oh there you are’.

I was surprised to find him somewhat like a lost child mentally — a very soft, sweet child. He told me he had been in another place that was really awful. He sought for words to describe it, but in the end just said, ‘I cant explain’. 

He said, ‘I went to your place but I couldn’t find you. There was a big room with a bed and you weren’t there.’ [The nurses have mentioned that he goes looking for me sometimes.] He asked me very humbly if he could come home for a visit. That wrung my heart. I said he could, but didn’t immediately remind him he’d be coming home to live.

I almost had second thoughts about taking him home for keeps, seeing him so deep in dementia. It seemed as if he might ‘settle’, as they call it, after all. And I became very aware of how much attention he needs now. In the recent past I could go out for a 20-minute walk, or duck down by car to the local general store. Not any more.

‘Where do you go at night?’ he asked. I told him that I go to our home, and asked playfully, ‘Where do you go?’

He looked down at the bed. ‘I guess I’m pretty much here.’ 

‘Where would you like to be? I asked.

‘With you.’

That was enough for me. I promised he would be, and soon.

He brightened up and agreed to go and have a shower, after first saying he didn’t feel like one. When the lovely young South Korean nurse brought him back and started straightening his bed, he began making conversation with her.

I decided to stay for lunch there. It was a staff member's birthday, and one of the others encouraged us all to sing Happy Birthday. After it was over, DH chimed in clearly with, ‘Hip, hip! ...’ and we all cheered.

Then I came home and made phone calls. The lady who administered the EACH package I had (domestic help and in-home respite) answered her mobile, said she’d already discharged us as requested, but thought maybe she could help.‘Leave it with me!’ she said.

Our handyman mate Flip, who used to be an aged care nurse, came round to help me decide what’s needed to make the house safer. I told him I’ll hire him in addition to the EACH package; if he was here two hours a day every day of the week, it’d still be cheaper than the nursing home fees — even their concessional fees. In fact, I won’t need him anywhere near as often as that. He can come in and give DH a shower and shave, and that will give me the maximum hours of in-home respite from the EACH package. The package could include that service too, but it would encroach into the other time.

I am going to have to lock all the doors, just as they do at the nursing home, for his safety. This means I’ll need to install a cat door. I’ll have to ask the Housing Department for permission, but I don’t think it’ll be a problem.

Flip, in his handyman capacity, will build a ramp that will fit over the back steps. As it won’t be a structural alteration, we won’t need to ask permission. And on Monday I’ll go to the palliative care storage sheds in search of a light, folding wheelchair for occasions when the wheely walker isn’t enough. 

It is clear to me that I will not be able to write, read, network etc, as easily as all that. He MUST be my main focus. I will have to drop some activities and rearrange my life. Well, he's worth it!

Tomorrow is Mother’s Day. The nursing home is having a special morning tea to which I’m invited. The next day — home!

One Week In (in the nursing home)

I sit here tonight doing what I have so often done before. It’s a little after 9 pm and I am at my computer, reading poems, while he sleeps. The only difference is that instead of sleeping in the next room, he is sleeping just down the road a little way. 

I am trying to reframe this dreadful ‘separation’ thing that is in my mind. And in his.

He was quite lucid today. So this morning, when I spoke of taking him home some time to see the cats, and he looked at me sceptically, I addressed the subject. 

It was only this morning that I learned I was mistaken in thinking he was initially there as a respite patient while the paperwork to make him permanent was going through. No, it had gone through much faster than I realised, and he was admitted as a permanent resident. So I explained this, as gently as I could, emphasising that once we get settled in the new situation, I’ll be taking him on outings including day visits home; and that he can have 52 overnight visits a year, so one possibility is to come home one night every week.

‘I’m a bit scared to bring you home,’ I admitted, ‘In case you won’t leave again.’

‘But that would be good,’ he said.

So I had the conversation again about how it’s no-one’s fault, but the situation has been forced on us by what’s happening to his body and what’s happening to mine. (Last night I was hatching desperate plots to get him home and make it work somehow, when I was struck by severe arthritic pains in wrist, ankle and neck, and realised, ‘No, I cant manage it.’) 

He understood. We both cried. 

‘I want you to be happy,’ he said.

‘And I want you to be,’ I said. ‘But how can we be?’ 

But I also said, ‘This has been forced on us. The Universe seems to want us to be in this situation.  There must be a reason, and it must be a good reason. So it’s up to us to accept the situation and find ways to be happy in it.’ He agreed.

I really do believe this. As I pointed out to him, we got our Housing Department unit and then he began to decline. We had enough time to settle back into Murwillumbah, find our way to the right doctor and other services, reconnect with old friends here whilst maintaining contact with those from our six years in Pottsville ... it was as if it had all been orchestrated. Even the nursing home. It’s the one his daughter and I unanimously selected — and it just happened that the only other one that was possible for him didn’t have a bed available anyway. Not to mention the fact that the one he’s in is only three minutes’ drive from here. He is where he’s meant to be.

Having discovered it was already a permanent situation, today I went to Centrelink, informed them we are ‘separated due to illness’, and gave them his new address. As of May 1st, the day he went into the nursing home, I am on the Single instead of Couples Age Pension and my Carer’s Allowance is cancelled. The next thing is to inform the Housing Department and get my rent adjusted. 

It feels like a horrible, inexorable inevitability. I can’t believe that, step by step, I am doing this. Part of me wants to scream and rebel, to grab him and bring him back here. But I see how frail he is and how much he now needs the 24-hour support. I see the patience the nurses have with him, which I was getting pretty short of. I can read poetry online peacefully, without anyone calling for me, needing me. (Well, except the cats, but they’re a bit easier to deal with.)

He is just around the corner, cared for and sleeping. Tomorrow someone else will give him his breakfast, his insulin and his tablets, take his blood sugar, feed him, and help him shower and dress. 

Today I reminded him that when we first got together, I was quite happy to have a relationship with him but, having just come out of a marriage that went wrong, I was determined not to jump headfirst into anything. I wasn’t going to share a house with him. In my mind we would keep our autonomy. (That didn’t last long!)

So now we’re back to a courting situation, I told him — and added, ‘But I’m your wife, and don’t you forget it!’ He grinned.

Beginning to Adapt

I told my extended family by email what has befallen us. (The immediate family, of course, has been kept in the picture all along.)  This reply came from a cousin I’ve always felt close to, whose husband — now deceased — got Alzheimer’s decades ago, when she was much younger than I am now:

Hi dear coz,

I think we have all been expecting this, and altho I am so sorry for you both, I can say from experience that it is going to benefit you both.

By the time I moved P into care I had ruined my immune system and had no enjoyment in his company.

Once we both settled down the stress levels decreased and we could enjoy the best parts of the relationship without as much distress. Of course it is heartbreaking and it still upsets me ....but I felt that I could be my best for him once I wasn't the prime carer.

It still hurts me to hear discussions about the Altzheimer's disease and I have recently had to leave a philosophy class in tears because of their total ignorance of my background.

I am so glad you are close by, as I was 66 kms away and couldn't stop myself visiting after work and at week-ends. The worst part was that P's closest long- term friends couldn't handle it, and he kept asking....where are the others?"

I am sure you will get wonderful support from all your friends....and I send my deepest love to you both.

Everyone tells me I have done the right thing. It seems that friends have felt for some time I was taking on too much. And when I look back realistically, or read things I wrote over recent months, I see why they thought so. 

But both he and I are now looking back to the good bits, as one does. I realise we want what was, which had already declined. Instead we must try to find what is good in the now.  When I am able to bring him home for visits, that will surely help.

At first I tried to recreate home at the nursing home, but it didn’t work. For instance, we can’t watch our favourite TV shows without lots of surrounding noise, and interruptions by nurses giving him his medication; it’s hardly worth it. We have both decided to give up on these endeavours. So we talk, sit and read our respective books, have meals together sometimes. But there is a lot of food in the fridge at home, meant for us both, which I can’t let spoil, so sometimes I just have coffee while he eats. (Preparing meals at home, often I still automatically pull out two plates.)

He is nicer to me now, bless him. His pain is being better managed by the professionals than I could. Also I visit in the mornings when he is at his most lucid and therefore most agreeable. It wasn’t that he was not sweet and lovely before — much of the time he was indeed, but there were also those other times when pain and confusion made him frustrated and grumpy. I’m nicer to him as well: my own unremitting stresses already abating.

He is beginning to adapt, although he still longs to come home. The day before yesterday, he remarked, ‘This is quite a nice room.’ Yesterday he said of the nursing home as a whole, ‘This is a very nice little place’. 

He doesn’t remember falling, doesn’t understand why home is dangerous for him now. I explained yesterday that it’s not just our unit, it is also his body — the collapsing legs, and my inability to cope with that. I also told him that I had realised how tired I’d become. He went silent, digesting that. (He never wants me to suffer, and one thing he thinks is that he should be at home looking after me. He used to try to, but I had to discourage him for the last year, because he simply couldn’t manage such thing as cooking or doing dishes any more, either physically or mentally.)

After a while he said, ‘Maybe I could come home for a little while some nights and watch a bit of TV.’  It broke my heart of course. Back home, I sobbed most of the evening. But when I did myself watch a bit of TV, I had vivid recollections of recent times. Him sitting in his armchair, me noticing he didn’t have his hearing aids in, getting them, inserting them, turning them up or down for him when he complained about the volume level. His limited grasp of what was going on, even in old favourite shows. Him deciding to go to bed at 7.30 or 8.30 and me watching on (if there was something to see) alone.

These last months, when he was here, there were times I longed for aloneness and freedom. If he were away for a short holiday, I’d be ecstatic now. It’s the permanence that causes the ache. However, we are in early days. He WILL come home for visits, even overnight stays later on, so I’ll try to look forward to that and have him do so too.

I suppose I too am beginning to adapt.

April Was Indeed the Cruellest Month

Confusion

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.

Pain

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. 

Collapse

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.

Hospital

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. 

Nursing Home

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.