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!
Tuesday, September 18, 2012
Monday, September 3, 2012
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.
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.
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.
Friday, August 24, 2012
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.
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.
Tuesday, August 21, 2012
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.
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.
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.
'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.
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