Wednesday, October 10, 2012

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.

Tuesday, September 18, 2012

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!

Monday, September 3, 2012


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.

Wednesday, August 29, 2012

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.

Monday, August 20, 2012

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.


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.

Saturday, August 11, 2012

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.

Thursday, August 9, 2012

... 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.