PS — New blog

I do go in for excess when it comes to blogging — anyway have created a new blog, The Widowhood Chronicles, for what comes next.

Reflecting, Summing Up and Signing Off

One of the things I wanted to do with this blog was share the story of living with dementia. It turned out not to be a very typical story though, because it was complicated by my husband's physical ailments. We both experienced them as much worse problems than his mental condition.

Luckily he never progressed beyond 'mild to moderate' Alzheimer's, with the help of medication. The medication had to be monitored and tweaked — as did all his medication for the physical ills — and ironically we had it just about right at the end. But things like infections or high blood sugar would exacerbate his confusion.

Even mild to moderate Alzheimer's can be a problem, of course. Basically I had to live in the moment; things could change suddenly, without warning. He'd be lucid one minute, then in some other reality. I had to be very flexible, responding to whatever was so at the time. I didn't always manage it very well, because there was no way I could anticipate where his mind would take him.

In the end his body broke down in all sorts of ways. His time had come. The doctors think he had a series of tiny strokes, too small to show up on a scan. I think so too.

He never got aggressive with me, never failed to recognise me or other people he cared for, and remained loving and caring right up to the end.

Now I begin the strange journey of widowhood, but that doesn't belong in this blog. I'll probably post on that subject at SnakyPoet. [Later: NO, I created another blog. Details in next (and final) post here.]

I'll leave this blog here as an archive, for whatever use it might be to others.

Thanks for reading!

Completion

My beautiful man passed away today about 3.40 in the afternoon. The nursing home phoned me just after breakfast so I went straight there and our dear friend Maureen joined me there, and we sat with him all day. The nursing home fed us, and we reminisced about him and his life, and talked to him too, and held his hands, knowing he could feel and hear us although he was unable to respond. He was very peaceful and comfortable all day, and went quickly and easily. He did wonderful things in his life, and was a treasured friend and mentor to many. I have been very blessed to have 20 years with this incredibly loving man.

Mostly Comfortable

After 18 days in hospital, he improved enough to be sent to Heritage Lodge nursing home. He is in the 'high care' section, sharing a room with a lovely man who was in the same hospital ward with him — however they don't have much interaction, both needing lots of rest.

He is completely bed-ridden, having lost the use of his legs and the ability to adjust his own body in bed. He can move his arms somewhat, and his head just a little; that's all. The nurses check and turn him every two hours. Since he has been there, he has mostly claimed to have no pain — but when he is moved, it hurts him and he groans or cries out, 'No, no!' and 'That's enough!' Otherwise he says he is comfortable, and he looks peaceful. He still has the catheter. His food is puréed and his liquids thickened to prevent anything going down his airways, because he has lost the ability to trigger his swallow mechanism properly.

I know now that he is not coming home even for a visit. At first I think he knew that too. He knew exactly where he was. Today, five days later, he asked, 'Where am I now?' (It looks different from the room he had before.) I told him, explaining that he is not sick enough to be in hospital any more, but not yet well and strong enough to come home.

His two older children arrived from interstate late on the night before he was transferred to Heritage. The transfer happened in the afternoon. We all went to see him as soon as we got the call to say he had arrived there, and he was delighted to see us, particularly his kids, and fairly talkative although it was obviously something of an effort. (It is as if the thoughts take a long time to reach articulation.) Over the next few days, though, he became more and more sleepy and weak. They felt there was little they could do, and it was very hard for them to see him like that, so they decided to go back home.

That afternoon I went in on my own, and found him dressed and sitting in a recliner chair watching a movie on TV. I sat beside him, and he reached out his hand for me to hold it. It was obvious he enjoyed the movie. Afterwards he nodded off peacefully. Next day he was in bed with his eyes closed, but roused when I spoke to him.

Yesterday, though, he seemed barely conscious. Early in the evening the doctor phoned me to say he was very concerned; the nurses had called him in because they themselves were so concerned. My darling had eaten almost nothing, and was very unresponsive. We had the conversation which I also had earlier, in the hospital: would he want to be kept alive no matter what, or just kept comfortable and allowed to slip away? I know, because we have discussed it in the past, that he would want to be allowed to go. I gave my instructions accordingly. I said that one of his sons was planning to come up in mid-September, and asked if he should come sooner. 'Yes,' said the doctor. I phoned Younger Stepson immediately.

I was there at dinnertime and tried to feed him, but he closed his teeth against the food. The nurses said they wouldn't force him to eat.

Younger Stepson arrived this morning on the first plane. We went straight around to see his father — and found him awake and much brighter. The doctor had said he would stop one medication which had a sedative effect: obviously the right idea. Over the course of the day he has eaten; not much, but a lot more than he did yesterday. He was touched by how many visitors he had in the afternoon: four of us, YS and me and two friends.

'The world's here,' he said, tearful with surprise and delight.

'Dad, we're here because we love you,' said YS.

One of the other visitors is a very good healer who did some work with him, a gentle laying on of hands accompanied by invisible mental/spiritual techniques. She said afterwards that she had put him in a place of peace, joy and love, so that he would be awash with that, and he certainly appeared to be from the expression on his face as he fell gently asleep.

He is also getting ongoing absent healing and prayers from myself and many others. He is being looked after beautifully by the nurses. I watch them in action and could not ask for better.

'Death' my Reiki Master used to say, 'Is the greatest healer.' I believe his time has come, whether he goes soon or lingers. What I want for him is peace and comfort, and the knowledge of how much he is loved and what he has meant to so many people in his life ... and of course to go easily.

Reprieve!

My darling husband has improved so much that today he is being moved to Heritage Lodge, the lovely nursing home which he so recently enjoyed staying in. This time he is going into 'high care' and, at least at first, sharing a room with a very nice gentleman who was in the same hospital ward with him until a few days ago. He will be in the window bed, looking out on a garden.

Yesterday he was in very good spirits, and he has been pain-free for some time. His mind is wandering a bit, which may be due to the infection he has had pushing his blood sugar up high, in which case it should settle down a bit.

I don't think he will ever visit our home again and see our cats whom he loves so much. At present the only way he can be moved from bed to chair is to be hoisted in a sling! It takes two nurses to adjust his position in bed; he himself cannot move his own body so as to get comfortable.

Truthfully, I still believe he is dying, but that he has chosen to do it more gradually and comfortably than at first seemed likely. Much as I was thinking I didn't want him to linger on in a dependent state, now that it is happening I am glad and relieved. This is largely because he is in such excellent spirits, and I know how well looked after he will be.

He has never lost his sense of humour; also he tells me he has a lot of work to do, and sometimes is partly in a dreamland where this is being accomplished. I don't, now, try and bring him back to this reality; I enter into his as much as I can. However he recognises all his friends who have been visiting in the hospital, and is always well aware who I am.

His older son and his daughter arrived late last night. I think the knowledge that they were coming helped him rally as he has done. Now that the matter is not so urgent, his younger son, who has a tricky situation at work, has deferred his visit for a couple of weeks — which is good; it will give my darling something else to look forward to.

It's also an easier adjustment for me to living alone. He'll be only five minutes away and there are no restrictions on visiting hours. Meanwhile, everyone says I look well. I have been through much grief of course — but also life is much more restful now that I don't have all the physical care-taking to do.

My Husband in Hospital

All day he has been by the window, looking out at the hills across the way. This morning he was sitting up, admiring them. This afternoon he was resting. When I asked, 'Are you awake?' he opened his eyes, looked out at the sky, and said with pleasure, 'Oh, it's all bright!'

The Slow Progression

One day he is better, the next worse, the next better ... but even his 'better' is still very ill. I believe that my darling is dying. I can only say this here, not on facebook where his young grand-daughters might read it prematurely. And I need to acknowledge it.

Hospital Visit (Yesterday's journal entry)

My days are punctuated by going to see my Darling Husband in the hospital. It's where I am now, at 3.20pm. He is pretty much asleep, curled up in apparent comfort. When I touched him gently and said his name, he murmured, 'What are you doing back here?' (That's good. He remembers I was here this morning.)

'I've come to visit you,' I said. He murmured even more softly that he was tired, so I stroked his hand and told him that was OK, I'd brought something to read. However, it's been days since I journalled and I don't want to let the practice lapse, so I'm doing this instead.

This morning he was sitting on the veranda, slumped over, but he brightened when I arrived, and I helped get some morning tea into him. The nurse said he'd been asking for me constantly; but after about an hour he got tired and suggested I'd better go. This is the usual time-span for visits. Then he seems to sleep most of the afternoons — which is not unusual at home, either.

He has antibiotics administered by canula, and his urine is still being drained by catheter, which saves a lot of messing around. This morning I took him through his arm and leg exercises and his breathing exercise. He did them all right, though the arms seem weak. It seems little enough to stave off muscle weakness, but I do it every time I'm here.

They say he's getting better, joking and giving cheek, and managing to feed himself. 'Had a busy morning,' they say. It's true, while I was here this morning, he drank his thickened liquid from the cup by himself, rather than me spooning it into him.

He asked several times this morning when he could come home with me. I kept telling him I wish with all my heart he could, I'd like nothing better, but it can't be until he's well enough.

Meanwhile both cats are off their food. Levi got the symptom first, so I took him to the vet on Friday. All tests were OK, so I've been told to feed him little and often, tempt him with his favourite food, and warm it. So far he has had only the tiniest bit even so, and Freya is now the same. I have to take Levi back to the vet tomorrow if he's still not eating by then. I think I'll be taking Freya too! I have prawns to tempt them with tonight. Will also get some little cat treats.

Later:

He woke, and I gave him his afternoon tea and a left-over banana from his lunch, spooning the thickened liquid into his mouth and breaking the food into tiny pieces.

He kept asking to come home, but he is unable even to adjust his body in the bed, and it took two nurses to make him comfortable enough to be able to sit up and have his afternoon tea. At home, recently, he was having great difficulty wriggling his body in bed to get comfortable. When he was in Heritage he complained that the bed wasn't comfortable. I wonder if it was not the bed that was the problem but his inability to make himself comfortable in any bed.

Today I stroked his head — and found a lump on the back. Did this happen when he went wandering that night? He said he had no memory of anything before coming to and finding himself lying in the road. Did he have a fall and knock himself out?

Also I am concerned that his head is usually slumped forward. Even when he straightens it, he seems unable to lie it back very far.

He knows me, and he is now mostly lucid, with very few hallucinations or moments of confusion. But he says little, and spends much time silent and staring into space, or with eyes closed even when he's awake. He seems to have to summon up strength to come back from somewhere in order to answer any questions. Then sometimes he will come out of it a moment and volunteer a remark. When I feed him, we are both fully engaged in those actions, truly living in the present moment.

But this evening when his dinner arrived, he wanted to feed himself, and he was managing OK so I left him to it. The nurses were keeping a close eye on him. Tomorrow I am seeing the doctor. It will be about me, as I haven't completely shaken the bug I had (I am told it can last for weeks, and recur) but it will also be about him and what the prognosis is now. I can see that there is some improvement, but oh, so slow and gradual! I believe I'll be cancelling his next dentist's appointment too (already cancelled one).

He is not the least interested in reading yet, but when I told him what I am reading, he asked if he could borrow it when I'm finished. He yearns towards the normal life we have had, and I don't think he recalls that just being at home had become awkward and uncomfortable of late. I tell him he will come back home soon and see the cats — which he is eager to do — and don't remind him that he will be based elsewhere and coming home only on visits. I don't know how it will go, but I hope he will be able to see it as having two homes. It doesn't appear that it will be very soon.

Be Careful What You Wish For ...

How often have I wished for time to myself, peace, freedom from the myriad practical responsibilities, the space to complete my activities uninterrupted....

Now I have that, and I am mourning the absence of those interruptions and tasks. I want my husband back! [At this point please see previous post, if you haven't already read it.]

I will have him back in various ways, from time to time, but what strikes me most forcibly just now is that we'll miss a lot of the spontaneous, immediate interaction. If he's feeling down for a moment, I won't be there with a hug or a word to make him feel better. I just have to hope that someone else will, and that he'll have the wit to ask. And it's not all one way, you know. Even the very night he went wandering, earlier he was cuddling me and giving me Reiki because I was ill. I do have my own Reiki hands, but the touch of his is very special. 'Best in the business' I always said, and it's still true.

But there is no help for it. I know this, and also I did a detailed Tarot reading just now as to how I should proceed. To sum up: Embrace the new!

At the moment, though, we are still in transition. He's still in hospital, having contracted a urinary tract infection. I'm a lot better, improving each day, but still coughing and worried that I might still be infectious. One more day home, I think, before I visit him.

A week with no contact but frustrating phone calls. He forgets to put his hearing aids in, and the infection has made him confused. No wonder I'm feeling disconnected. When I can give him a hug, we'll both feel better.

... While We're Busy Making Other Plans.

Darling Husband's fortnight in Heritage Lodge went beautifully. He was comfortable and contented, and well looked after. I had lunch with him there a couple of times in the very posh private dining room. When my son was visiting, we took him out to lunch and for a visit to the Art Gallery. Both the Sundays he was there, I arrived in the evening and we watched our favourite TV shows together, just the two of us in the comfortable TV lounge, with supper laid on. I took him from there on visits to the dentist and the chiropractor. I had peace of mind knowing he was contented and well cared for; didn't feel obliged to visit at least once a day or monitor his care (as during his stay at the disastrous previous place). I visited every day or so, and he phoned me now and again. I was able to get a rest.

He had a lot of autonomy. By the time he left, he was getting to know some of the other residents. One lady had complained at dinner of terrible back pain, saying the doctors couldn't find the cause. He did some absent healing on her, and she told him next day it was cured! Her son made a point of thanking him.

He said he was a bit bored. There was an outbreak of gastro. He didn't get it but some of the staff did, so the usual range of activities, for which Heritage is renowned, didn't happen. But they have a good library and he found things to read. Also I had the daily paper delivered to him there. And he did participate in some activities that were still going on. He says now that no, he wasn't bored, so it obviously wasn't an overwhelming impression.

It was all so successful that we agreed to do it more often: one week every couple of months, with the option of making it permanent down the track if that should be required.

He came home, and we had a nice week together. A couple of days of readjustment on both sides, and the usual difficulties of caring for him, but also lots of sweet companionship. I was making all sorts of plans for things we could enjoy together. Then on Sunday night I came down with fluey symptoms. I was coughing fit to choke. I decided not to lock the doors from the inside and hide the keys, as I had been doing. It was beginning to seem like an unnecessary precaution anyway, and I thought, 'What if something happens to me? He could probably manage to phone emergency, but he wouldn't be able to let anyone into the house.'

About three a.m. I stirred, to see him getting out of bed and grabbing his walker. I thought he was on the way to the toilet. I was woken at quarter to five by a call from the local hospital, to say he had been found wandering our street and the person had called the ambulance. He was 'pretty cold' so they were keeping him in overnight. 'He's safe,' they said. 'Go back to bed.' As if I could!

I found the front door wide open. Somehow he must have got himself and his walker down our steep front steps, which normally he doesn't use, without mishap.

I got to the hospital about eight, with some clothes, thinking to take him home from Emergency. Instead he was in the medical ward, in a heat suit, eating breakfast.

'I was hoping you wouldn't come,' he said. 'You need to be at home, resting.' As if!

Our doctor made his rounds shortly afterwards. He and the head nurse agreed that DH must stay in hospital while I'm ill. I have enough to do looking after myself and would be unable to care for him as well. So I went back a little later with pyjamas and toiletries.

I went to the doctor next day about my symptoms, which by then included gastro. I have been ordered lots of rest and lots of water. I was recently prescribed Panadol Osteo for my arthritis; I am to continue taking that regularly. I haven't had any appetite, which is just as well, as even cough mixture comes straight up again. The doctor said it won't hurt me to go without food a few days so long as I drink one-and-a-half to two litres of water daily. And I am forbidden to visit the hospital until I am well. We are surviving on occasional phone calls. The latest is that he seems to have an infection, possibly the same thing I've got.

I have reached the sad conclusion that I can't keep looking after him any more, even when I'm well. So I have arranged with Heritage Lodge that he will go straight from hospital back there. The paperwork is under way to have him made a permanent resident, and if necessary he can be on temporary respite until that is finalised. I haven't yet told him about the permanent bit, only 'a week's temporary respite with the option of longer.' I want to break that news in person.

Once he is permanent, he can come home for overnight visits 63 nights per year, in addition to daytime outings, and I can visit him whenever I like. It's the best possible solution, yet I am sad and weepy. Last time he was away, I often felt as if he was still here, just in another room. This time, I feel lonely.

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.

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.

Will the real Rosemary please stand up?

He's been delusional for days. It does seem to be related to codeine; hopefully the newly re-jigged medication régime will reduce his pain and he will have less and less need for the codeine. It will have to be out of his system a day and a half before its effects stop.

Meanwhile he gets confused about where he is and who I am. Sometimes he has to be told the way to the toilet — in a unit he's lived in two and a half years. Sometimes he goes and lies down on the spare bed, thinking that's where he sleeps. He exclaims how like 'this place' is to where we 'used to live'.

He seems to be in dual realities, as I've mentioned before — sort of knowing he's at home, and yet thinking he's somewhere else. He has a similar confusion about me, at least some of the time. He knows this woman with him is his beloved partner, but sometimes thinks his wife Rosemary is someone else ... or that I am his wife, and yet there is another woman.

After our last visit to the doctor together, he said to me worriedly, 'There's another factor. I've been sleeping with two women: you and my wife, Rosemary.' It took a lot of reassurance to convince him there's only been me and I am his wife, Rosemary.

When I got him clear on the fact that he was living here (at home) with his wife (me), he was jubilant.

'We're re-united!' he said, and wanted to put announcements in the paper and a sign out on the street to tell everyone we were together again and that he could now be found at this address. I persuaded him we could do it by email. Later he said, 'I feel complete.' And he sounded it. I have been treasuring that moment in retrospect ever since.

And there was the time when he was in bed (as he often is these days, with daytime naps as well as long night sleeps) and I wanted to know if he needed anything. He had trouble responding to my suggestions, so I thought to simplify it with a more direct question.

'What do you want?' I asked. He looked up at me bemusedly, thought about it a moment, and said, 'You.'

Then, a couple of nights ago, as he was getting to bed, he asked, 'Could we go down to the other room and say goodnight to Rosemary? She's been through a rough time. It's hurting her too.'

'I'm Rosemary; I'm your wife,' I assured him yet again.

'Yes, I know that,' he said impatiently. 'I mean the real Rosemary.' Then, dreamily, 'She always kisses me goodnight.'

It's true — on the many occasions he goes to bed too early for me, I do help him into bed, tuck him in and kiss him goodnight, like a mum with a child.

I decided to humour him, so we went to the spare room and he could see there was no-one there. He went back to bed. I lay down beside him and gave him a hug.

'We'll get through this,' he said, 'But I want Rosemary to know that I care for her.'

With tears in my eyes, I said, 'She does know.'

I Perceive That He Craves Purpose

He is all the time in alternate realities now — except it's not so straightforward as that, because he is at the same time partly in this reality ... or in parts of this one.

He gets cross with me because I seldom understand the exact details of what he wishes me to do. He tells me he wants me to drive him to go and see 'the boss man of the other mob'. [American readers, 'mob' here doesn't mean gangsters.] He cannot explain to me who the boss man is, let alone his name, nor what the other mob might be. It annoys him that I don't know already and can't carry out his instructions without knowing.

When he said the other mob was, 'You know, over there in Prahran,' and I told him Prahran was in Melbourne and we couldn't drive there in an afternoon but would need to take a plane, he said he was losing patience with my stupidity.

Sometimes he wants to drive himself, then remembers — because I have told him repeatedly — that he doesn't have a licence any more.

Other times he thinks we must throw a big party (tonight — of whatever day he suggests this). And/or we must put me 'on a pedestal' so I can tell people all about 'the whole thing'.

Long, long before I knew him, he had the brainwave to bring an accelerated learning program for teenagers to Australia. He persuaded a friend with appropriate skills to become co-founder, and they launched Discovery, a hugely successful program which was later taken over by others, spread all around the country and I believe is now being presented in New Zealand. Learning of his current state of health, various old friends have contacted him to pay tribute, saying what Discovery meant to them and their children. It was inspirational and life-changing, they tell him. Finally, today, something he said clued me into the fact that he is somehow reliving that experience and wanting to start Discovery anew — or perhaps he thinks it's for the first time. He is clear (today at least) who I am, and who his old friend the co-founder is, but it seems that in some way he is casting me in her role, in his mental visions.

One of his oldest pals recently said in an email, 'My sadness is modified by the knowledge that in whatever moments he has of lucidity he will create new visions and grand plans, and so live those moments with enthusiasm and expectation. That is what he has always been and will forever be.' Very true — but there is less enthusiasm and expectation, more drivenness and frustration. And it is not happening in the moments of lucidity but in those other moments ... which are now about 99% of the time.

Well, the doc prescribed codeine phosphate for his pain, which I am giving as seldom and little as possible without having him be in agony. Guess what, it metabolises into morphine in the body! (But we can't give him anti-inflammatories because he has to take warfarin for his artificial heart valve. And so on and so on. His medications have to be carefully balanced.) He is now on a low-dose anti-psychotic without the Parkinson's-like side effects, and he has begun his Parkinson's medication. Also he has been taken off Lipitor which can cause both joint pain and memory loss (!) and put on Lipidil which does the same job (lowering cholesterol) without those side effects. He has also had blood and urine tests to make sure there is no underlying infection which could be causing added confusion.

Seems to me it's the Alzheimer's which is causing it. The symptoms match with those described in a very good book on Alzheimer's which my stepdaughter got me.

One benefit of the medication changes is that he has a bit more strength in his legs and is not bent or twisted as if from a stroke. And my back, which I temporarily stuffed trying to help him move himself, is getting better with treatment.

All the same, I am finding the delusions hard to cope with. When possible I go along with them a bit, and/or try to distract him. Distractions only work for a little while, though. He has always been a driven man, in his quest to help humanity and the planet. Some activities he would once have enjoyed, he now often says he hasn't time for because he's got to do this other stuff.

The anti-psychotic doesn't make him less delusional, only less agitated concerning the delusions.

Yet without them — without some great cause to work for, whether real or imagined — I realise his life is purposeless. He was never a person who was going to be able to put his feet up in old age, rest on his laurels and enjoy his simple pleasures. And so, it appears to me, his psyche is having him relive and regain his sense of purpose.

There are many things I could do to help — if only I had the time. But it's only me doing the laundry, cooking the meals, washing the car, balancing the budget, giving him his pills and his insulin injections, taking him to umpteen medical appointments, shopping ... and trying to find a little life for me in between, as a writer.

The Fog Thickens

From an email I sent today to some Reiki channels I know, requesting absent healing: 

After having an excellent month since coming home from the nursing home, showing improvement in his Alzheimer's tests and being very lucid, coherent and companionable, he's now gone into some other reality where he keeps wanting to go home! It is hard for him to realise he is at home, even though he recognises our possessions and surroundings and knows me and the cats. The other reality gets obsessive.

Last night he wanted to go down our steep front steps in the dark and wet! And with his wheely walker to boot. He is a high falls risk, so that is never an option any more. (The back steps have been modified so he can go out that way, with help.) He was also talking of driving 'his' car, even though he surrendered his licence last year and our only car is registered in my name. Well, I keep all the doors locked from the inside and the keys on my person, but even so it is difficult. Anything I say in reassurance gets incorporated into the fantasy. E.g. Me: 'You don't have a car any more'. Him: 'I've got to take the car away because I don't own it any more.' And so on. He thinks I'm the mad one.

I am not the best person to work on him — though I do — because of my anxiety about him and about the whole situation. 

This has been going on for a few days now. Perhaps it is a phase that would come to a natural end, but I don't know that and anyway the sooner it ends the better.

He has been diagnosed with Parkinson's and will be starting medication for it soon. We had to get his pain medication for his severe osteo-arthritis (mainly in trapezius muscle, i.e.back of neck and right shoulder) sorted out first. 

I give him a very low-dose anti-psychotic when he gets agitated at night — so that not only he but I can get some sleep. I have to try and look after me, otherwise we're both in trouble. He was briefly on a very strong painkiller prescribed by his geriatrician and started the anti-psychotic a few days later. He turned into a zombie and was also unable to straighten up properly. At first I thought he might have had a mini-stroke, but the symptom gradually wore off in the course of a day, and next day he would be crooked again but in a different direction — listing to the right one day, the left the next, stooped far forward the day after that. Also his speech became slurred, and he seemed more confused. I contacted the geriatrician, who said to take him off the pain medication. Also my stepdaughter found out that that anti-psychotic has Parkinson's-like side effects, so I took him off that too. 

We saw our GP, who said the anti-psychotic was in such a low dose that it ought not to have side effects, but perhaps in combination with the painkiller.... It was obvious that it puzzled him. He said it shouldn't account for increased confusion either, as it was designed to have the opposite effect. I gave him all the tablets, painkiller and anti-psychotic, saying maybe he could use them as samples for patients or something, and he remarked what a good thing I hadn't paid a fortune for them. He told me the very strong painkiller would take five days to 'wash out of the system'. He prescribed a different pain medication which we began immediately, which thankfully is proving successful and doesn't have the side-effects. 

Two nights later, after going peacefully to sleep at his usual time, [DH] woke at midnight — just as I was shutting my computer ready for bed — and emerged into the living-room, looking bright and aware. 'Hello!' I said. He said hello back, and started to say something about setting up a central command. I told him, as I've had occasion to a few times before, that he must have had a dream which still seemed real. In the past he has accepted that and gradually come back to reality. This time, he asked me (not aggressively), 'Who are you, anyway?' Wow, that was a first! (And has not happened again, so far.) I told him, 'I'm your wife, Rosemary.'  'Well,' he said, 'I don't care whose wife you are; we've got work to do!' 

I gradually soothed him down and persuaded him that the work could wait until morning. I burnt lavender oil, which in the past has had a calming effect. We both ended up sleeping soundly the rest of the night. Next morning I asked my neighbour to sit with him a little while, and dashed down to the pharmacy with the repeat prescription for the anti-psychotic. (It was a Saturday and our doctor wasn't working; this seemed the quickest solution.) But then, it was only three days since stopping the strong painkiller, so I didn't dare give it to him yet in case it was indeed the combination of the two that caused the side-effects. Luckily he had two relatively calm and normal nights. Fifth night, this stuff about needing to go home began and he became quite irritated with me. 'Well,' I thought, 'We're about to find out whether the anti-psychotic was the cause of the side-effects,' and gave him one. He did calm down in a little while, in a sad and rather zombie-ish way, and I got him into bed. Not before he became profoundly stooped forward.

Next day (yesterday) I took him out for his routine blood test to monitor his Warfarin dose. He barely managed it, and the getting home, because his legs were so weak. However he wasn't so stooped. He  had lunch, slept half the afternoon, got up and watched a DVD with me, and became even more obsessed with going home, preferably through the front door, and driving the car. He was getting quite agitated. Nothing I said helped; neither did a phone call I made in desperation to his son Adam, though Adam probably thinks it did. (He is getting a sort of childlike cunning, saying what he thinks will get people off his back, then going right back to his obsessions when it's just the two of us again.) So I gave him another tablet, he started falling asleep in front of the TV, and being really 'out of it' in a drugged rather than sleepy way when I roused him. So I put him to bed.

Early this morning when the cats woke us for breakfast, he knew he was at home. We went back to sleep for an hour, after which he was once again on about going home. He put his shoes on, gathered up a couple of books, and was all set. I persuaded him to let me give him his insuiin injection and take his blood sugar (normal — so it wasn't a high blood sugar delirium) and to have breakfast and his morning medication. He realised he was in pyjamas, and said, 'I haven't got any clothes so I can't go out.' (Believe me, I made an instant resolution to keep him in his jimjams all day!) His shoulder was in pain, medication not yet working, so I persuaded him back to bed. At first he said, 'I dont think I can sleep here,' but I showed him the cats on the bed and assured him it was his own bed. I don't think he believed me, but he submitted to being put in it and went to sleep.

'It's his journey,' some people say. I wonder if indeed it is the will of his soul. 

It is and has always been the combination of physical and mental problems that makes things so difficult. Once again I am contemplating a nursing home, in fear I won't be able to cope. When he can't move his body very well, it is hard for me to move it for him; I don't have the strength. I would hopefully not choose the same nursing home again, though. There is another that has both high and low care patients, where he could find more people to converse with. They didn't have a spare bed last time; I think I might have a talk to them and get on a waiting list. I also think about maybe a week there in temporary respite to see how it is in practice. Persuading him might be a problem, though! I also think about taking him for a visit to look the place over, but he'd need to be a bit more in here-and-now reality for that to have any point.

I even wonder if he sometimes thinks 'home' is the nursing home he was in before. Some things he says sound as if that's so. 

Anyway ... there it all is. And I am exhibiting signs of stress! (Funny little nervous habits; difficulty concentrating....) Please spare me a zap or two too, if possible.

There’s Good News and Bad News

Alzheimer’s Improved

We had an appointment with the geriatric specialist at the end of May, only last week. Dear Husband improved by two points on his cognitive test — enough progress to warrant continuing his Alzheimer’s medication. (If it doesn’t prove effective, they stop it — which makes sense, of course.) I was jubilant. Thank goodness I pulled him out of the nursing home when I did.

Arthritis

Meanwhile, his arthritic neck had become very painful. The geriatrician prescribed a strong painkiller, and said I should start him on one tablet a day, maybe increasing to two.  

Parkinson’s

He thought DH’s trembling hands a sign of Parkinson’s and prescribed some medication for that too, but I am not to begin it until he has been having the painkiller for two weeks.

Settling at Night

We followed up with a visit to our GP.  DH was zombie-like on the painkillers after I’d increased the dose to morning and night. It does carry a warning about drowsiness. The GP advised taking it only in the morning. 

‘Wouldn’t it be better at night because of the drowsiness?’ I asked, adding that DH sometimes gets up in the wee small hours and has a shower while I’m sound asleep. Great that he can shower himself; not so great that he tends to leave the water running. Instead the GP prescribed a tablet they’d tried in the nursing home. People with cognitive difficulties can get agitated at night; this drug is not a sedative but it settles them down.

‘Give him this at night and the painkiller in the morning,’ he said. So I have been doing that. 

Side-effects

Yesterday morning I took him breakfast in bed. A short time later I found him slumped to one side, eyes closed, his cereal spilling onto the bed.

‘’Oh what are you doing?’ I cried, grabbing it and starting to mop up. He yelled at me,

‘Well, you shouldn’t force all this stuff on me that I don’t want!’ A startling allegation! But for once I did the right thing and reassured him. His body seemed to be listing to the left for most of the morning, then gradually righted itself.

This morning when I asked him how he was, he said, 'Confused.’ He went back to sleep after having his insulin injection and taking his medication. I woke him for breakfast and he came to the table to have it. He could hardly walk, even with his walker, and his body seemed to be listing to the right. He complained about pain, not in his neck now but in his right shoulder. (Oh no, not again!) When he sat at the table, he kept falling over to the right. Luckily he was sitting in his wheely walker, which has arms, so he didn’t collapse all the way onto the floor. He ate his breakfast in that position, refusing help.

At this point, my friend K rang, to see if she could come over for a coffee. I responded in tears and panic, saying I thought DH might have had a slight stroke. She wondered if she should come; I begged her to. I was considering calling an ambulance, and felt the need of another person’s opinion.

He was annoyed with me for telling her his symptoms. 

‘You always make me out to be such an arse,’ he said. He refused to come and have a shower with me, but went and sat on a chair in the bedroom and told me to shut the door. He was still sitting there an hour later when K arrived.

But he came out to greet her pleasantly enough, unembarrassed at being in his pyjamas. He sat at the table with us for coffee and made conversation, before moving to the armchair. He wasn’t sitting crooked any more. He farewelled her politely when she left.

He slept all afternoon, and I woke him for dinner.  He came out bent double, unable to straighten, shuffling and tottering. I had to prop him up as he ate his dinner because of that list to the right again.  I muscle tested to see if I should give him his ‘settling down’ medication, and got that it was in his best interests to do so. After that he sat in the armchair and we watched some TV, then he decided to go to bed. He was still awake, lying there calmly, when I joined him. We chatted a while, hugged each other, and patted the purring cat, who loves to snuggle between us. But I couldn’t sleep so I asked if he’d be upset if I got up again and came to the computer. He said he wouldn’t, and seemed to mean it.

Yesterday and today he has thought we were somewhere other than home, though he couldn’t seem to say where, nor where he thought home was. He asked if I was going to take the cats ‘back’ with me when I left. Then he suggested they weren’t used to this place yet. When he first went to bed tonight, he asked where I was going to go. It was only when I assured him this was home and I’d be staying here with him that he relaxed. By the time I joined him, he was perfectly well aware of where he was.

It’s Saturday. We’re not due to see the GP again until Friday to check if the medication needs any tweaking. I think on Monday I’ll phone the geriatrician for advice.

The Bursitis Saga

I never did finish recounting that here. To start again at the beginning —

Dear Husband had an ultrasound at the radiology lab in town; they found bursitis and a torn tendon, and made an appointment for him to get a cortisone injection guided by ultrasound. He had some falls on the Wednesday when he was due to have that, and went to hospital instead. He was discharged Thursday and I made a new appointment for Friday for his injection. He fell again on Friday and went to hospital instead. His pain continued; our doctor authorised the hospital to do the injection. They did; he was surprised that his shoulder still hurt.

One day I observed a bandage under his pyjama top, on the left shoulder. But it was always the right shoulder that had been hurting! The head nurse followed it up and found that the radiology lab had examined and reported on the left shoulder, therefore our doctor authorised the injection in that shoulder. The nurse assured me there was bursitis there, otherwise the injection would not have gone ahead. Obviously it must be in both shoulders.

Our doctor was away for a week. His offsider authorised another injection at the hospital, for the right shoulder, but before it could happen, DH was moved to the nursing home. I got a call from the x-ray department at the hospital. When I explained he’d been in pain for weeks by now, the woman who phoned said she would book him in almost immediately. This didn’t happen. The nursing home staff couldn’t find the referral which was supposed to have been sent to them. I kept pushing for something to happen but they couldn’t do much without it. They assured me they were anxious too for his pain to be relieved. I phoned the x-ray department and encountered a different woman, who said the first one had put a note on the file saying it could not go ahead without authorisation from a different doctor. We never did find out why!

On the advice of a nurse at the nursing home, I phoned our doctor's rooms to see if there was a referral letter languishing there somewhere. No, but our doctor then wrote another one. 

Finally a nurse with a bit of initiative phoned the hospital, and was told they couldn’t do it for another two weeks — so she then phoned the radiology lab, and they booked him in the following day. He went from the nursing home by maxi-taxi and wheel chair; I met him there and saw the procedure, ensuring it was the right shoulder this time (in both senses of 'right'). Apparently there was a mistake on the original referral they received; that’s how the wrong one got done. But as he had bursitis in both shoulders, in the end it seemed like a good result.

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.