Life as a Carer

Himself has been home nearly ten days and my life has changed dramatically. This post is in the nature of a self indulgent telling of what it has been like. I aim not really looking for sympathy but it certainly has been an eye opener into a world that so many people cope with every day. My admiration for those who work as carers is manifold. How they do this job day after day In have non idea. For much of the time, particularly in the daytime, it has been tiring but fairly alright. Himself cannot walk without using a zimmer frame and getting him to the toilet etc is a real challenge unless he has his hearing aids on. He struggles sometimes to understand instructions when I tell him to walk in a certain way etc. Carers come in at the moment to help wash him and get him dressed but the rest of the time we struggle on. He has a good appetite and eats well. Getting him in and out of a chair can sometimes be hard work. He wants to eat at the kitchen table as he always has but this can necessitate a careful walk with a zimmer frame from the dining room where he sleeps through a couple of doorways to the table. Transferring from a zimmer frame to a chair is a complex and lengthy manoeuvre. But the day times are manageable in the main and most of the time he is amenable.

Night times are a whole different kettle of fish. Because he needs the toilet during the night I have a put you up bed in the same room. Himself sleeps on a hospital bed and we have zimmer frames, a commode and urine bottles as well as clothes etc festooned around. He cannot manage his toileting on his own and needs to call me each time he needs to go. Some nights this is just a couple of times and managed easily although I am now beginning to feel the lack of undisturbed sleep. I have been lent a baby monitor that I could set up so that I could sleep upstairs in a bed but when he called that would necessitate me coming down stairs and I am not sure how safe I would be when half asleep on twisting narrow cottage stairs. A tumble down the stairs wouldn’t help. The disturbances of sleep wouldn’t matter so much if when I got into bed my back and knees didn’t ache so much. No doubt the stress of the situation has made the aches and pains very much worse. Some nights the disturbance is much greater and as I write this I am sitting at my kitchen table at nearly eight o’clock and have been up since seven but also over four times in the night with several changes of bed clothes and sheets etc. Everything seems much worse when one is tired. Himself is fast asleep and probably I should be too but the carers might come any time from 7.30 so I need to be around. As I read this, while having a cup of tea, I am aware that it is the story of many others too. I am not alone in this situation but, I suspect, each and everyone of us feels as though we are totally alone. I’m some ways it reminds me of those lonely nights when my children were very small but then I was forty odd years younger!!! Not that that made it any easier as I recall. Then too I often didn’t make it back to bed – I would curl up on the bed room floor wrapped in a duvet.

The washing machine is on constantly and as I type it has come to the end of a wash. I need to put the washing on the line but will Himself wake up and need the loo? Will he try and get out of bed and fall perhaps hitting himself on the metal frame of the hospital bed? I will have to wait. The house has become a camp site with clothes, bedding and aids for the infirm strewn around. We do not have a shower room on the ground floor and Himself has to have a strip wash each day. The small loo is full of a raised toilet seat, a frame around the toilet, sundry piles of wet washing, dry washing and changes of clothes for me and Himself. As regular readers of this blog will know I am not a house proud cleaning fanatic but now I am in danger of becoming one!! Perhaps it is some kind of therapy but the hoover is out almost everyday, perhaps I have some kind of “imposter syndrome” and am trying to prove to myself and others, most notably the carers, that I am up to the job, can keep the house tidy etc. Who knows??

Himself was suffering from confusion and delirium as a result of the very low levels of sodium and while the sodium levels are now at an acceptable level the confusion aspect of the illness is very much lagging behind. It might continue for some months – coming and going dependant upon if he is tired etc. Himself still doesn’t always know who I am, he still thinks that he is in a house that I bought when he was in hospital and he is puzzled as to why he only recognises some of the furniture etc. He can’t work out if he is upstairs or down on occasion and he can’t remember some people and things from the past. On a good day he is lucid and has managed to FaceTime both of our children but on other days he doesn’t know who they are or if I am his mother or his wife. On top of this because he has cataracts and dry macular degeneration he also suffers from a condition called Charles Bonnet syndrome. This, in effect, means that he sees things that aren’t there – hallucinations. He sees people, animals and flowers mostly but some of the hallucinations can be quite scary. By trial and error I have discovered that watching TV causes the confusion and hallucinations to intensify. So no more TV for use for then foreseeable future!!

My greatest joy today has been to take a few minutes in the garden to hang out the washing. The sky is blue, the sun is shining and although it is chilly and there is a heavy dew on the lawn it is a beautiful day. I took a moment to listen to the chorus of bird song and to take in the distant views of the hills and fields. It is truly delightful. Then I remembered the bird recognition app on my phone. In two minutes it recorded the sounds of a Robin, Wren, Crow, Blue Tit, Great Tit, Rook, Goldfinch, Jackdaw, and Green Woodpecker. The other day as I sat at my desk in the window I saw a small “charm” of Goldfinches pecking on the lawn, and this morning a Robin strolled slowly across the gravel drive – so charming and a delight to see. More spectacular and startling was the fox that ambled across the lawn – russet red and sleek he made his way to the field fence and disappeared underneath into the corn. Another day he strolled casually across the drive and out into the lane. Orange tip butterflies are flitting among the flowers and the roses have started to form buds. The Tulips are fading fast now but still give a welcome splash of colour. Bluebells and For get me nots are providing a blanket of blue across the top of the garden. I have only been able to get into the garden to do some weeding etc once or twice since Himself has been home. The weeds are having a field day but if I can do a little each day that should keep it under some sort of control. Thank goodness for the gentleman who comes in once a week now to do the “tough” stuff. I haven’t been for a walk along the lane since Himself came home and therefore haven’t seen the new lambs. I long too take a stroll but am fearful that Himself will take it in to his head to try and walk without the frame and a guiding hand to the loo and that I shall return to him lying on the floor. Am I being the overprotective “carer”? Should I just let him cope for little while? I don’t want him back in hospital, selfishly I don’t want to have to go to and fro the hospital and struggle through the chaos that ensues.

Thank you for wading your way through this tale of woe – and thank you too for the kind messages you have sent me. I have no doubt things will feel a whole lot better if I have a sleep in a while and once I begin to get used to this “new” life – in someways it isa very much like the Covid lockdowns – I am buying loads of stuff from amazon – and yes I know they are “naughty” in some ways but they are also my saving grace when I can’t get out. I haven’t taken any photos lately so here is one of my favourites.