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.