Christmas came and went, in a flash like it usually does. I was lucky to have invites from neighbours which lifted my spirits no end. I’m not a great fan of Christmas but am very aware of the pains of separation from family which so many others will be feeling too.
I saw Leaf last tuesday. He was not on form, mainly, I think, because two nurses came into the room with a weighing scales. He struggled to stand on the black pad but was very wobbly and got extremely agitated. He wasn’t wearing his glasses, (I must find out why) and I deduced that he couldn’t understand what he was supposed to be doing. I suggested the nurses leave us to it – I would have another go later. Luckily the no-touching rule appeared to have been relaxed but I think that was because one of the nurses was the most senior and the other more mature than the youngsters I had to contend with the last time. So whilst we were alone we stole a quick hug, better than a nothing one.
I did manage to weigh him by standing astride the gauge and helping him up onto the pad. I let go and in that split second was able to read his weight – 56 kilos. He always was thin and I was glad to see he hadn’t lost loads more.
The rest of the visit was a bit of a wash-out. He wasn’t with me at all, apart from talking rubbish, he kept wandering off down the corridor. In the end I left. At reception I asked about booking another appointment and was told I had to ring the psychiatrist. I did the next morning, to be told she wouldn’t be in until Monday (tomorrow) and that anyway, the ward would closed over Christmas. I suppose that was hardly surprising. The staffing levels were right down and anyway, what would dementia patients know. Poor souls, they are really the bottom of the compassion heap. It’s awful. It’s a godsend that Leaf is so resourceful and adaptable.
So, Christmas is over and now it’s time to summon up enough energy to face the prospect of the months to come as, I imagine, so many others must be. We will have to dig deep into our inner resources to get by and survive what lies ahead. Lots of friends have said they can’t seem to get around to things that need to be done. Along with the apathy the winter brings, we have the lockdowns and restrictions to deal with.
One thing I have been able to do a lot of is read. Where would I be without my books? Where would so many of us be? Those wonderful, solid, actual books and DVDs, CDs, tapes and records. We are now in the Techno age or The Fourth Industrial Revolution as Klaus Schwab – what a horrendous character he is – of the WEF refers to the 21st century. Now, the majority of the population in the so-called ‘developed world’ relies on Kindles, MP3s and Netflix. But if there’s a serious cyber attack and all is lost, what then? (btw this has been predicted) We must back up EVERYTHING we value on our computers. And, luckily, not everyone has done away with their ‘material’ collections of reading matter, music and films. I will be able to play Leaf’s favourite music for him, put on a fun DVD and read aloud to him.
Back to summoning up that elusive energy to tackle what may well lie ahead. It is tempting to lay out what I think, based on my research, but I’m tired of doing that and anyway why should anyone take any notice whatsoever of what I have to say. I’ve met with derision, disbelief, even shock when airing my views in the past and I’m sad that my efforts to put forward other points of view and ideas have fallen on, mostly, stony ground. When we think we see danger ahead, surely we shouldn’t keep silent. Apparently, many would prefer we did.
Having said that, I would like to remind readers there’s masses of information online predicting what we may have to face and it’s a good idea to be prepared. I get the feeling I’ve written about prepping before but it may have been in emails. Whatever, it’s well worth mentioning it again. In these uncertain times, ANYTHING is possible (as the many excellent videos on The Corbett Report will tell us) and we need to be ready for a power outage at the very least. Apart from backing up vital info on our computers …
… here are the household basics:
• foods – dried and tinned, tetrapacks with long sell-by dates and liquids in bottles and jars
• pet food
• loo rolls, soap, toothpaste, cleaning fluids, medicaments and toiletries
• batteries for ….
• …. torches, lamps, radio, cassette player if you have cassettes
• wood for wood-burning stoves
• non-electric forms of heating such as gas bottle stoves + a good supply of full bottles
• a hot water bottle
• a corded telephone
• some form of non-electric cooking
• a stove-top kettle
• a very large pan for boiling water
• water purifying tabs
• at least one book on prepping and surviving in a power outage
• a book on house and garden tips, tricks and recycling
• resourcefulness, ingenuity, determination and optimism
(readers suggestions very welcome of course)
I am aware that prepping has been a source of amusement in the past along with accusations of paranoia, but I well remember neighbours being unable to even have a hot cuppa in one outage. Also, virtually all the above are good to have in the house anyway.
My prepping for Leaf coming home is virtually done with the exception of transporting and installing the hospital armchair on wheels that I rescued from the tip in Galan. I tried it out on site, despite the wet seat and it was really comfortable. I think it will come in very useful. God knows what it would’ve cost if I’d had to buy it.
ps Please overlook lay-out oddities – still battling with the new WordPress editing
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doodahtwo.home.blog 
Hello Sue,
Thank goodness you have been able to see Leaf and give him a hug. Is Leaf still waiting for an operation? I believe you said he needed one before he can come home. Have you decided against St Joseph’s?
Let us hope 2021 will be a whole lot better than 2020 and that you will succeed in getting Leaf to a place where you feel happier for him.
Sending you lots of good luck and positivity.
Adrienne xxx
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Hi Adrienne, Yes, he has to have a procedure before the catheter can be done away with and the earliest preliminary appointment with the urologist is third week in Jan. Whether he goes to St. Joseph’s will depend entirely on Covid. Once he comes home, I will not permit him to be put away anywhere in any danger whatsoever of complete isolation. These confinements are literally torture and the most dispensable are the elderly with AD. Also, they would probably insist on him being vaccinated and you know well how I feel about that! Thank you for your continuing love and support. xxxx
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That chair will be my abiding memory of the end of a stressful few days , a positive sign maybe?
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Hi Jenny, yes one of my abiding memories too which will be augmented by whatever shenanigans are required to get it into the house! Definitely a good sign because it’s something to laugh over in a time of utter frustration. Bon continuation!
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Oh my Su,
I’m afraid I’m in tears again: never mind. I didn’t realise Leaf is going to come home, and I have to ask myself – can you cope? As you know we’ve just lost our last relative – Caroline’s mother – to dementia. What with my father, and Caroline’s parents, dementia has been a serious preoccupation of ours for many years, so I can claim some acquaintance with the condition, and I really, truly, wouldn’t want to try and deal with it at home. Those experienced professionals have been an absolute godsend to us. It’s not just the washing of bums and the constant security and cleaning issues, both of which have at times driven me to distraction, it’s the fact that you don’t have a shift partner at home, or, of course, even another shift – it’s 24 hours and seven days a week with no let-up: you need a full staff for that. If my promised brain condition continues to deteriorate I will make damn sure Caroline doesn’t have to face the issues you will have to.
Of course a lot of it is trust; we were extraordinarily lucky with the accommodation we found for Caroline’s parents, I visited scores of establishments before finding the “Old Vicarage” – whose name says it all really. It really was a home, the only one I came across in those months of searching. They were brilliant and continued to be so for years. To be as content as one can be with such a situation, trust in the caring organisation and individuals is paramount. You sound very wary of the staff at Leaf’s current institution, but of course I have no idea what options are available to you, either financially or politically.
I send you my love (bugger Christmas) and my deepest thanks for looking after my oldest surviving friend in such a loving and careful manner.
Blessings (of the non-religious kind)
John
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My dear John, You and Caroline have probably suffered more than most having cared for parents with AD and therefore know the likely pitfalls. Of course, each patient is different.
The professionals, well, the good and caring ones, are undoubtedly a godsend but, as I said to Adrienne, there is no way I would condemn Leaf to being shut away with no visits in a home, no matter how good it is and that’s what’s playing out into an indeterminate future. Countless old folk shut away in homes have died of loneliness. I know it will be hellishly hard having him here and I will value the help I’m arranging enormously but I have to do what I feel is right for him and, of course, what squares with my integrity.
I have no faith that this virus business will just go away – don’t forget I’m an avid researcher and am very well aware of what’s coming down the pipeline!
Another part of the problem about Leaf going into a home is that they would no doubt insist on a vaccine and we (yes, we) do not wish to be guinea pigs.
So bringing Leaf home and doing my utmost to see him through the rest of his life is now my mission. If I can’t carry it through, then so be it, but it won’t be for want of trying.
Very happy to send you info but I have a feeling you would rather not know!!! Like so many others. Lots of love and blessings of the spiritual kind to you and Caroline xxxxx
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Hi John, I had to ask , you mentioned the old vicarage, is it the residential hame in the Lake District? A friend of mine mother lived there and they were so happy with the care she received.
I can only agree with you how hard it is to look after an AD person. My mother suffered from this dreadful illness, but it was only when mother was moved into a care home We got our mother back, we weren’t the terrible people who tried to make her wash her hair or shower etc we were able to become her daughters again and enjoyed a wonderful relationship again.
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Hello Sue, I will check this out with John as I don’t know if he follows up on comments.
How marvellous for your friend and you and your sisters that you could place your mothers in good care homes. I assume they have now passed on. How lucky for you all that they spent their last years in loving places. In our current world there are thousands who are now virtually imprisoned in homes and, along with their families, must be suffering immensely. Not being allowed to visit your loved one, let alone hold their hand or put your arms around them, is torture for both parties. We have to face up to the fact that we are not in a normal situation and therefore need to think outside the box.
I am so very aware of how difficult caring for a dementia patient can be. We have to change many of our priorities apart from cope with the vagaries of the disease. I may well have an impossible task ahead of me but, in view of the current restrictions, I have to try to the very best of my abilities. We are no longer living in the same world as we were a year ago and are likely to have to deal with circumstances that most of us cannot yet even begin to envisage. We will need to find a way to adapt or go under. Having my beloved husband with me is my first priority and I will take it from there. Thank you for comment.
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I’m glad you got to share Christmas with friends Sue and got a hug at last. Has Pepe come back? Xx
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Thank you Trisha – it was good. No sign of Pepe, it’s so sad. I hope you’re well and happy as far as we can be in these confusing times. Love and strength, xxx
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