Friday, 24 July 2015

The Yoyo-ing Effect

I feel quite ashamed that I haven't managed to write a new post telling you the latest news. The comments in the last post were so kind and I realise that everyone must be wondering what has happened and how we're getting on because over my years of blogging, I've made some good friends who care about us both and I also feel this connection with you all.

The truth is that we're in a very similar position to the last time I wrote. Harry must have been a very strong person because his body has been trying to move on to better things for well over a year now but something manages to pull him back just as we are all despairing and resigning ourselves to the inevitable.

So the only way I can describe my life really is that I'm yoyo-ing backwards and forwards from one extreme to the other and trying to live in the present and just get on with things.
As Harry's life becomes narrower and narrower, I wonder what pleasures he has left as he's totally bed bound, so cannot now see the beautiful garden with the squirrels and birds that he used to enjoy so much and can only eat pureed food spasmodically and has great difficulty communicating.
However, inside his head, he knows what's going on and can experience all the frustrations of his restricted world just the same as you or I could. He has TV which he sometimes enjoys but probably listens to when he can't find the strength to watch.
I go in to see him for a few hours everyday. Some days he can laugh and is interested in talking and listening but other times he doesn't really know I'm there. I never know what to expect when I go in. Each day is different. Harry doesn't stay on the the same level but swings from near unconsciousness to being alert and I do think of a yoyo because of the extreme of it all.

The local Hospice Specialist Care Nurse comes to see him/me weekly and they do support family as well as the patient.
Unfortunately it is Charity funded and only has 12 beds for the whole of our city and because of his unpredictability has no chance of getting in there. They do wonderful support behind the scenes and I do owe them for their considerable support over the last year or so.

So thats our life in a nutshell. Yes, a yoyo just about describes everything.

Saturday, 27 June 2015

Slipping Away.....

Over the last week, Harry has been slipping away from me, sleeping more and more and not being able to communicate very well at all.
He drinks from a covered beaker and eats a mouthful of soft food most days.
I sit by his side and stroke his hair and talk to him while he is sleeping. Who knows if he can process what I say or not?
Occasionally he opens his eyes and stares into space, other times he smiles and says, Hello.
I am missing him. I miss the conversations we used to have. I long to tell him the little snippets of news that I know he'd be interested in.
I feel I have to visit each day and sit with him but we've had some really lovely sunny days and I feel the summer is slipping away too. 
Somehow I had never envisaged him declining like this at the height of the summer. It would seem more natural on a cold, bleak winter with bugs and flu and viruses to catch...... but not in such perfect conditions as we're having now. 
Am I being silly or not?

Thursday, 18 June 2015

What About Pushy People?

We're almost at the height of our summer now and it's lovely to sit in the shade of a tree out in the open spaces with a book. When I'm in my garden, I seem to always see something that needs attention, something to clip back, weeds invading the flowers, so I often dart about doing all these jobs rather than sitting with a book as planned. I'm not like that indoors though and read away for hours.

As it was a dry, mild day, yesterday, I decided to get a bus to Wells, Somerset, which is about an hours journey from here.
The city is very small and the streets narrow and I'm sure that if it didn't have a magnificent cathedral, then it would be classed as a town.
I knew it would be market day and there would be a lot of people about and I thought it'd be good to wander round and spend a couple of hours before returning home.

I'd not been on the bus very long when a young girl plonked herself down next to me and immediately started to be very gushy with, *How are you today? I like your top. etc.* At first I wondered if she was alright but realised she wasn't British so didn't think she knew we didn't like that kind of approach. Almost immediately after I acknowledged her with a casual remark...... she got out her pamphlets and started to try to get me interested in her religion. All I wanted really, was to sit quietly and look at the lovely countryside around me as it was my precious day off. However, I was jammed in by the window so couldn't escape and I didn't have the heart to dampen her enthusiasm, so I let her pray for Harry and took her pamphlets which I read but later disposed of.
I think as we get older, life is not so black and white as this girl was making out. The smile on her face seemed plastic and I wonder if she'd had to try to convert me for an assignment at the *chapel* she was going to en route. I was relieved when she got out of the bus a good deal earlier than I did.
I thought of all the people who would have been really uncomfortable with this girl's cheeky move. It seems a bit like the Charity muggers (that we call Chuggers* in England.) They jump out at you and say, *Hey.... how are you doing?* as though they are long lost friends and all they want is to get you to sign up with a Direct Debit for their charity. They then try to make you feel quite guilty if you say no. (A 92 year old woman from Bristol recently jumped over a high cliff to her death because she was overwhelmed by begging letters and she tried to give to everyone and got herself into a mess.)

When I arrived in Wells it was drizzling with rain the whole time I was there. It didn't stop me going  for a long walk and I met 2 lovely ladies who asked me if I'd like to go for a cuppa with them (they weren't selling anything, asking for charity or peddling a religion!) I met them in the bus queue in Bristol and talked while we waited for the bus.
Although I cut my visit short because of the rain, I found I had quite enjoyed the trip. The bus journey going home was without incident..... almost boring. The streets were dry in Bristol as it had been sunny all day. 
I had plenty to think about when I got home, recalling the unusual journey to Wells. 
What do others thing about fanatics and chuggers?

Friday, 5 June 2015

Alone But Not Lonely

It seems really strange not to have any artwork on this post but Blogger is not allowing me to put any pictures on here at all.
I've decided to go ahead with it anyway..........devoid of any visual aids.

My life seems a bit mundane right now but as Harry was going to have visitors on Thursday I decided to get on a bus and go to the lovely Roman city of Bath.
It's about one hours journey by bus.
It was a gloriously hot day and after browsing round shops and places of interest, I took out a sunhat and sat in a square surrounded by some beautiful buildings.
There's usually a busker in this square and by the time I sat down, it was the turn of a Spanish guitarist. I think buskers are allowed about half an hour each and they usually are of a very high standard.
I really enjoyed the music while I ate my sandwiches.
It wasn't long before a mother and with her newish baby asked if she could sit next to me and  almost immediately we struck up a conversation. She took what looked like an apron out of her bag and she fastened it around her neck and draped it over her baby and proceeded to feed him. We got onto all sorts of discussions, including the merits of breast feeding. (Strange subject for a woman of 73). Anyway, baby was fed and admired and the mother popped him back in his buggy and said she'd enjoyed our chat very much and off she went.
Almost immediately, an older lady asked if she could share my seat and we started to talk about other things...... the best places to visit by bus, where the nearest and best toilets could be found. and so on. After half an hour or so this lady said she'd enjoyed the conversation and she went on her way.
Both of these ladies, Bath residents, at different stages of their lives, one young and one not so young had crossed with mine somewhat fleetingly and left me with something to think about other than my situation with Harry in the home.
I got to realise that you can be alone but not necessarily be lonely and others can appreciate my company for a while even though I feel I have rather a boring life.
I think a day out definitely did me good.

Wednesday, 13 May 2015

The Softer Side......

Photo Copyright: Maggie May

Although early mornings and late evenings are chilly, we've had some lovely sunny days and my visits to see Harry in the nursing home have been really pleasant. In his room, there is a lovely glass door that opens out onto a grassy garden with bird feeders and tubs of plants. This garden is visited by grey squirrels and many species of birds. Harry can see all the wild life coming and going from his chair.
He was a builder for most of his life and obviously has a tough side to his personality.
However, recently, I've seen his softer side. He amazes me by saying repeatedly, "Look at the lovely way the sun shines on those leaves, isn't it beautiful?" Just look at those birds and the squirrels....... you couldn't have picked a better place for me...... it's all so lovely."
He almost makes me cry as these remarks are more the kind of things I would have said. At one time, if I'd have remarked about the beautiful way the light played on the blossom to him, then he's have probably said, "Oh yes"and got on with whatever he was doing.

Sometimes I take a packed lunch with me and eat it there, maybe in the garden or his room. There is a resident cat, probably left by an elderly who died there years ago, for the cat is very old. He seems to sense that I like him and he comes to be stroked or nursed by me. It's all on his terms though and when he's had enough, he jumps down. He does curl up in a chair in the room if the weather isn't as good and sometimes spends hours at the foot of the bed.
Its good to be able to stroke a cat and not have the responsibility of owning it. I do miss not having a pet but I won't be tempted again.

Whenever I go to see Harry, I never know what I will find. He's on a good run of stability at the moment but it could change so quickly and repeatedly it does. I'm learning to accept what comes and be grateful for it.

Sunday, 26 April 2015

Tinged With Sadness...........

Photo Copyright: Maggie May

The past two weeks have been a time for adjusting to our new situations.
I started off by feeling rested with renewed energy after many months of little sleep because of  the constant demands of being a carer. Harry and I were both accepting of the fact that we now have to live apart as I cannot cope with him unable to walk or stand.
However, I'm now beginning to feel much more sad, as the unrealistic reality of the possibility of him ever coming home or recovering, is setting in.
At first, Harry seemed to be improving and I seriously questioned whether he really needed to be in the care home. It is now apparent, as his illness is taking more and more of him away from me, that he will not be able to manage anywhere else.
He is increasingly tired and wants to spend more and more time in bed sleeping.
I don't think he really needs anything more as the nurses and helpers are giving him excellent care, spoon feeding him when he's too tired to feed himself and keeping him clean etc.
I spend most of my days visiting him and if he wants to sleep then I quietly get on with my knitting or read my book.
Sometimes he doesn't remember anyone going and often misses visits completely, other times, he sits in his chair and talks or watches TV. He's never the same twice and seems to be predictably unpredictable. I think this is the hardest thing for me to cope with as I swing from renewed hope to despair and back in a constant circle.

Yesterday, my brother, Eddie  whose blog many of you follow, managed to drive over to see Harry, together with our cousin Rod. Harry and I were particularly pleased to see long lost cousin but also Eddie, who has been restricted from travelling because of his really horrible leg ulcer, that is now responding quite dramatically to the skill of the district nurses. After we'd seen Rod onto his train to the north west of England, Eddie ran me home and we bought a fish and chip supper and spent some time together before he headed back for home.

On the positive side, I do receive a lot of pleasure from my garden and the spring flowers that are now in full bloom. It is my favourite time of the month, but this year it's tinged with sadness.

Photo Copyright: Maggie May

Saturday, 11 April 2015


It seems ages since I wrote a post but I've been a bit traumatised lately.

Harry got really sick a few weeks ago and I tried to manage him at home but when his legs packed up, I realised that there was no way I could do it. It took two people to get him onto his feet. Anyway, he had a severe infection and was sent to hospital so the situation was really taken out of my hands. For a few days we didn't think he was going to make it but antibiotics helped him to pull through. 
During this time, my brother, Eddiebluelights was in a ward a couple of floors below, with a swollen leg that had ulcerated. I was really worried when I saw the state of it but I was so pleased that I could see him every day. Eddie and Harry were both discharged from hospital on the same day.

I was told that I had absolutely no chance of looking after Harry at home any more as he was too much for me to cope with, so, with a heavy heart I had to find a nursing home for him.
I managed to find one fairly close to where I live and he has a lovely room looking out onto a lawn and he can see robins, blackbirds and squirrels playing out there. There is a black cat who also lives in the home and is free to wander in and out of all the rooms. Harry has a TV and a few personal pictures and things from home. Also, my daughter in law's mother is only two doors away. She had a stroke last summer and cannot look after herself. This makes visiting them both so much easier.
I've experienced many emotions over the last few weeks, which is why blogging has taken a back seat.
However, I'm now realising just how tired and irritable I was all the time I was struggling with Harry at home and now I feel rested and suddenly a weight has lifted from my shoulders. Today he had a whole stream of visitors. 
I won't forget Harry..... I go and see him most days and take him in little treats and tell him all the latest news.
All around me the lovely little flowers of the Forget-me-not are blooming and are scattered in little nooks and crannies of paving slabs and in gardens.
How could I ever forget Harry? We've been together for 53 years.