It’s easy to lose track of the days when you’re retired and even more easy if you’re living with a mountain of paperwork that has to be waded through. Day in, day out, filling in forms, scanning, copying endless documents. Nothing unusual about that – but it has to be the most boring occupation and one of most boring things to go on about. So I won’t.
At the hospital again, after another long meeting with the Assistante Sociale – going through the paperwork of course – I was told Leaf had moved into the dementia wing. Great. I went through to find him walking up and down the corridor. He seemed reasonably perky, was wearing his glasses and his hair was combed. He was happy to see me and took me to his room. It was a tremendous relief to discover he wasn’t restrained and wearing a catheter. This had seriously worried me since my last visit.
His room is very sparsely furnished – a bed and two chairs. No table, no cupboard, nothing else. There is a high shelf for his family photos and a couple of cards. We talked a bit and his voice seemed clearer. Then lunch appeared.
To say it was unappetising is an understatement although it wasn’t all absolutely revolting. I noticed the lack of flavour in the soup and the (bought) hummus. The bread was rather odd – more like cake of some sort. The egg-mayonnaise was fine but the mush on the dinner plate went straight down the loo. I did try it and yuck! Leaf rejected it. There was an orange and a couple of kiwis. I had to peel them for him, he would never have managed. I made sure he was drinking enough water. He complained about the coffee – I don’t blame him. I shall have to monitor the food in future and make sure I take something more nourishing. I hope it won’t be this bad in St. Joseph’s. I know hospitals are notorious for horrendous food.
I gave him a good foot massage, which he enjoyed as usual, and made a list of things to bring in. On the way out, I took the phone number so I can call him for a chat if I want.
It’s a good thing that I’ve had plenty to occupy me, but after several days of working my way through the papers, I found myself exhausted. Then, with time to think, once again I collapsed into floods of tears which refused to stop. After a while I managed to get myself together; crying can be very tiring and I didn’t want to be sobbing into my pillow.
Apart from the practical stuff which seems to go on and on, I have been soul-searching. Some might say that’s never a wise idea! Not me, I need to go through every angle and hopefully satisfy myself that I did my best. Seeing him in his previous room strapped in and wearing that horrible catheter, had brought all sorts of horrible questions to mind. Had I really done the right thing? Is he really okay? What have I condemned him to? Will he be seriously brought down seeing the other bods in the wing? I well remember Terry (husband one) in rehab following his head-injury, refusing to join in group therapy because all the other people were ‘such a bringdown’ and throwing a beach ball round a circle simply wasn’t his thing. It most certainly wasn’t! I hope they don’t try and rope Leaf into some baby games and sing-songs. I can’t see him getting involved, but then I could be quite wrong.
Luckily, my initial feelings of guilt have now gone. I know I’ve done the right thing, the only thing I could do in the circumstances. When your body says ‘NO’, you have to take notice, like it or not. However, if I find for any reason that he’s desperately unhappy, I will have to come up with a Plan ‘B’. I know I cannot get so exhausted again, but I haven’t absolved myself of all responsibility. With any luck, the move to the residential home will come soon, then I can settle him in, see how he reacts and take it from there. He’s wise and stoical, an adaptable man of great fortitude. I believe he still has inner reserves of strength, despite his rather frail appearance. These qualities are still evident; the essential person still tunes in on important levels. Even as his AD progressed, he never allowed himself to sink into depression, his moods, born mainly from frustration, rarely lasted long, thank goodness.
Seeing him apparently unperturbed by the starkness of his room, I have come to think he was totally overwhelmed by our house and all the contents – we are not minimalists. We have masses of memorabilia from all over the place. With Leaf, much is from his travelling days. Naturally he won’t be able to have all his stuff with him, so I’m going to be looking for a small, lockable, glass-fronted cabinet where he can see his Buddhas, statues, pretty stones, photos etc. A collage of photos will be a good idea as well as a couple of his own paintings. But all this will have to wait until he’s moved over to Castelnau.
Talking of his paintings, I’m arranging for Marcha, who has the tea room in Castelnau, to exhibit some of them on her walls. Once that’s done, I will put details on the blog. With the current restrictions, it’s still not possible to hold an expo in the mairie and I am willing to bet it will be a long time before we get back to any kind of normality.
More has happened this past week, but I will report on that anon. Basically because I’m waiting for a satisfactory outcome, so next week’s blog may well be a bit late.
doodahtwo.home.blog 
Hello Sue,
There is no doubt in my mind that you have done the right thing for yourself and Leaf. Now you can spend quality time with him, without having had the stress and strain of all his disruptive behaviour.
I have thought about your original idea of having a “special” person to live in your gite to help take care of Leaf but your account of his deterioration makes me realise that you would still not have been able to relax and regain your strength.
I hope that he will soon be moving to St Joseph’s so that you can arrange his room there for him and he will be nearer to you for visiting.
You did everything you could to make the last few years of his life living with you as best as they could be. Now, once the awful paperwork is completed, you can start to relax and re energise your body for what lies ahead.
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Adrienne, thanks for your endorsement. You’ve been behind me all the way and I do so value that. However, as I said in the blog, if he’s not happy, I will have to re-evaluate. I’m not expecting this to happen, but there’s no guarantee. At the moment he’s fine.
When I cracked up and Doctor Sabatier arranged for Leaf to go straight to the hospital, it was taken out of my hands and rightly so, under the circumstances. But we must remember, he was taken away with no chance to say how HE felt about it. I have suffered over that. It was right for me, but what about him? Poor guy. I’m lucky he hasn’t raised huge objections or accused me of shutting him away. He’s a fantastic man, even when put in this horrible situation and with his failing capabilities.
Roll on the move to Castelnau though. I haven’t been able to go inside there to see the rooms etc. but I can’t believe it won’t be nicer than the hospital.
Anyway, take care and see you soon.
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Your love for Leaf is unquestionable and you have shown remarkable resilience during the traumatic and tragic transformation of your and Leafs lives together. I think you are testiment to real love.xxxx
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Hi dear Gin, For some reason I couldn’t get my reply to you up on the blog last night. My love for Leaf is being tested hugely at the moment. Even though it became impossible, a struggle every day, I miss him a lot. It’s very hard not having him around, Just shows how the good things shine through when love is in the equation. xxxxxx
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Hello again Sue,
Do you think Leaf would ever have chosen to go in to a hospital or care home? If you decide to re evaluate the situation because he’s not happy would that mean he would come back home? How happy was he at home? If he did then he will not be any easier to look after and he could be much worse. Sadly I don’t think that a hospital or care home will ever feel good enough and there will always be an element of guilt for sending him there but you must remember how impossible it was to care for him whilst he was at home Sue. You can visit him regularly, give him hugs, food and foot massages and also continue your life. You have done absolutely the very best you could for him but now you can not do that 24/7.
Lots of love xxx
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I absolutely agree with you, Adrienne, but there is anything element that has come into the equation, which I will explain to you – watch your email inbox. Thank you for being by my side. Lots of love back xxxxxx
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Dear Sue, I hope you manage to keep a life for yourself – you’ve done more than your share of caring. It will be good when Leaf is settled in the dementia hospital and you can get some kind of rhythm behind things again. My mother-in-law (she with the severe dementia) passed away a few days ago from pneumonia, which event relieved Caroline of a dreadful bedside vigil as her mother slowly declined – the saga went on for four or five days. So this has been a release and a relief, Conchita’s life was not worth having any longer; she was 95 and hadn’t even been able to recognise Caroline for a year and never came out of a strange sort of shell. Oh well, we plod through life and it takes us where it wants, not where we want. Stay well darling, stay well,
John
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Hello John, Firstly, my condolences to Caroline and all her family and to you. I can tell it was a blessing but it’s always a shock – Caroline must be feeling exhausted both emotionally and physically. Please give her a big hug from me.
I am doing my best to ‘get my house in order’, despite constant interruptions from some authority or other demanding yet another photocopy of something or other. However, I will get there, I always have weathered the storms and will continue to do so until I have no further useful function. At the moment I would like to be younger and somewhere where I could stand up and be counted. We’re heading into a very dark abyss whether we like it or not and if only people would take their heads out of the sand, we would stand a chance of winning the day. Sorry, strayed off the point but this ‘thing’ hanging over us is affecting Leaf and I badly – more anon. Take care, lots of love. xx
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