Here we are, almost at the end of January already and next week is our personal ‘D’ Day. Well, one of several, possibly. We’ll see.
Last Monday’s visit didn’t get off to a good start. Leaf was led in stooped and sobbing. Tearlessly sobbing. I took his hands – the nurse didn’t stop me – and tried to get him to lift his head. The nurse left us to it before I could ask her what had troubled him. It took him a few moments before he looked up and saw it was me. I led him over to a table and sat him down muttering that there is nothing to worry about, everything is okay. When I asked him what the matter was, he looked blankly at me. I asked again but he clearly didn’t know or didn’t remember. Then we had a coffee and chocolates and he was fine.
The visit went pretty much the same as previous times – I would witter on and he would sort of listen, distractedly. His attention wandering round and round the room.
During the week I’ve been pondering long and hard and admitting to myself that I have no idea who or how he is now. Having been denied meaningful contact for three months, with very short visits and out of his day-to-day living context, I can only guess how much he’s deteriorated. My guess isn’t encouraging. The man who went into hospital at the beginning of October appears to be a very different person. How he would be away from his current home is anyone’s guess, although I suspect the nursing staff would be able to give me a reasonable idea, if I could to talk to them all. So, me being me, has decided on a course of action.
The appointment with the urologist is on Thursday. How Leaf takes it will be very revealing. How he reacts out of the dementia unit, how he behaves with the doctor and how co-operative he might be, is likely to tell me a lot. It’s not impossible that he will perk up and accompany me to the waiting area without a word. On the other hand …. Will he wear a mask? Who knows? He may well refuse – what then? It’s in the lap of the gods as they say. As is the result of the appointment. What procedure will be recommended, what that will involve and when that might be carried out remain, of course, to be seen. So I can make no plans as yet.
What I can do, depending on the result of the consultation, is let the gerontologist know that I will expect to be able to have time with several of the nurses to ask how he behaves in general. Depending on that, I will be telling her that I wish to bring him home for a short time to see how he adapts, several short times maybe, increasing as we go along. Rehearsal visits, if you like. This will give me an idea of how easily, or not, he will settle and how happily. Plus, of course, what I will have to be coping with. It would be unwise bring him home definitively without trial runs.
This is not new to me. Back in the eighties, when coping with first husband, Terry’s, accident, I persuaded the doctor at the rehab centre to allow me to bring him home for short periods before I committed us to the ultimate move. I remember, and can now chuckle, that I lined up three male friends to be with us when it was time to take Terry back to the centre. Albeit he was brain-damaged as well as physically handicapped, he was not far enough gone as to be unable to recognise that if he didn’t comply, we would have to carry him out to the car and no further visits would be allowed. The doctor didn’t want him to come home but I persuaded him that, if all went well, we would be able to cope. It did go well but with lots of Phews!
Leaf, of course, is brain-damaged in a very different way but I still hold out hope that he has some understanding in amongst all the tangles in his head. The optimist in me says that whatever happens will be for the best, and I am very aware that some difficult stuff could come along to impede a good outcome. I don’t give up easily and, even though I go by my heart and my intuition, there is a realist in there too.
Wish us luck!
doodahtwo.home.blog 
Oh, I do wish you luck sweetheart. You must feel so wrung out after these visits. Still hoping to find a Leaf in there. And maybe sometimes there is, in a different form. It will be such a hard path to follow, though as you say, you are a realist also, apart from the love. May the appointment with the urologist on Thursday bring a positive result. My thoughts very much with you. Chins up old darling.xxxx
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Thanks Alex. The visits are very strange and I often wonder if he remembers them at all or whether when I leave I’m out of sight, out of mind. More than likely, although he always recognises me and is usually happy to see me. I hope tomorrow he’ll be happier than last time.
Roll on Thursday and getting the appointment out of the way – not looking forward to it. Lots of love. xxx
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I suspect you are right, he may not remember your visits. I had a friend who was away with the fairies at the end and in hospital in Lannemezan, it was thick show and dangerous. I decided my life wasn’t worth risking as he almost certainly wouldn’t know if I had been or not. His mind was all over the place. Who knows. But I think your meeting last time must have been so upsetting to see him crying, but not tears. Bewildering. It is all so unknown. Lots of love for Thursday. I look forward to seeing your blog next Monday.xxx
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Alex, how sad for you that your friend had such a horrible time. I imagine he must have died. Do you mean he was dangerous because he had Covid? And did he have AD?
You’re right, it is entirely unknown because no two people are the same. We are all unique and what might be the case for one person is very unlikely to be the exact copy of another’s experience. After all, our brains are wired totally differently. Actually this gives me a kind of hope. I have enormous faith in Leaf even when he’s rambling. Inside is a very astute brain, albeit like an unravelled woolly. My soul-mate is still here but for how much longer, I cannot guess and don’t really want to as that would be unproductive.
Every day presents a new conundrum and thank goodness we can evolve our ideas – well, not all of us do, of course!!! As this current world situation clearly demonstrates. Stasis!
Thank you for your loving support. xxx
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Hello Sue,
We hope that Leaf’s rdv goes well. As you say, it will be a test to see how Leaf reacts away from an environment he has become familiar with. It is very sad to hear that he has deteriorated so much over the last few months and I expect you notice it even more now that you are seeing him once a week. We did notice his rapid deterioration before he was admitted to hospital and it sounds like it has continued. I worry that you may bring him home and his care will be far too demanding for you and you will be faced with having to put him back in to care with the resulting stress to you both.
Good luck for the 28th.
Love Adrienne xxx
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Hello Adrienne,
Yes, his deterioration did happen rapidly which was why I was looking for somewhere temporary where he could stay and give me a break. I don’t believe in blaming outside reasons, but I do squarely put the reason that couldn’t happen down to Covid.
Take another look at what I am thinking is the best plan and that will answer your worry – at least that was the intention as it is my intention to go gradually. Apparently I didn’t make myself clear. Thank you for your good wishes – we will see. xxx
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Hi Sue
Only just read this as my email account was hacked and so I changed my password and then received no more emails til this morning!
I’m very glad to hear Leaf has his long awaited appointment on Thursday and you are allowed to go with him.
I hope your visit to see him yesterday wasn’t so distressing as the weeks before. You have great courage . I am sure Leaf does feel some kind of happiness and comfort seeing you each week even if he doesn’t remember once you’ve left him .
Good luck on Thursday . We will be thinking of you xxx
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Hi Gail, I noticed several weird emails from you which I didn’t open. Hackers are a real bore.
Leaf’s appointment is scheduled for the afternoon on thursday – we’ll see how he copes with it.
He wasn’t distressed today but definitely elsewhere. I had to take my mask down for him to recognise me. He seemed happy to see me but later asked if I had any news of ‘Sue’. I told him it was me and he look relieved.
Roll on Thursday. Am looking forward to getting it out of the way.
See you and Foxy soon I hope. Our lake maybe xxx
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