Is there hope on the horizon?

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I woke up this morning feeling extremely under par. Nothing I could put my finger on, just a general feeling of not being right.

I can probably nail it all down to a really restless night, worry about my brother, guilt that I am unable to ease in any way the unbearable burden his children are having to shoulder, guilt that I really wish I wasn’t looking after the AP. Concern about my own health as well as my seeming inability to lose any weight (I did lose half a pound last week) and just to top it all off, worry that the whole situation is getting the LSO down. He really doesn’t need that as he is still recovering from being so very ill earlier this year.

Nearly forgot, the problem that actually brought all these feelings to the surface, for two days now we have had no heating and no hot water due to a boiler malfunction. This will be put right by this evening but we had a flush of the central heating system booked in for today and that cannot be done now as hot water is needed. That is now booked in for next Tuesday but I felt a great rush of frustration that was totally silly but is all part of the huge emotional trap that being a carer entails. The situation does not improve with time; most days I can ignore the feelings and by compartmentalising keep my sanity but I guess when the resistance drops it’s a bit like a breach in a sea wall and the waves of emotion rush in to drown me.

Is there any help out there? We have a lady whose professional title is a Care Navigator, coming to see the AP and presumably us too on Monday afternoon with, I hope, some suggestions to help break this immense feeling of being trapped and unable to sort our own lives out. Hopefully she will encourage the AP to get out and about but without us, perhaps even suggest respite care but I’m not holding my breath. The AP won’t think any of it is necessary.

The land of limbo.

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It really is a strange place to be and I feel as if I am living in another reality. Since the AP’s unreasonable and totally unwarranted outburst we have had our son and his partner staying for a couple of nights. It gave us all a welcome break from the rather strange calm that fills the house at the moment.

This is partly while we wait for news of my brother who remains heavily sedated. It is early days and we just have to be patient.

The AP is behaving quite rationally at the moment and we are all making an effort to keep the atmosphere light; so far it seems to be working. Perhaps the moment the AP realised we could be serious about her leaving her comfortable haven here and going to live in a Care Home was the catalyst for calm. I don’t suppose we’ll ever know the real truth. Her outburst last week reflected the fact that she confuses time and events continually and when she can’t work something out the AP makes a story up and then believes it. She can be surprisingly sly as well as quite vindictive one minute and then gushingly sweet the next.

I suppose what we are witnessing is the slow degradation of the brain that comes with such extreme old age. It is sad but that knowledge doesn’t make it any easier to deal with and somehow we need to find a solution that is not too painful for either of us. Because she is well looked after and does little except look after her personal care she thinks she can cope with anything. The truth is the opposite.

Meanwhile we will continue doing what we have been doing for the last four years and wait patiently to see what occurs. I do believe that situations can resolve themselves given time and we just need faith that our guardian angels are looking out for us.

Stepping back.

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After the astonishing revelation from the AP that she has never been made welcome here since day one and the worry about my brother, I have been forced for the sake of my sanity to take a step back from everything.

This pause for thought has been an interesting exercise. I am sorry for my mother that she may yet, God forbid, out-live her son but my own emotions about her are now very detached which is the only word I can find that explains how I feel. Its a bit like looking at a stranger with an element of curiosity. I have thought long and hard about this and her attitude generally and know that she certainly was not unwelcome in the beginning but her attitude towards us as time has gone on has become progressively unpleasant and we could never understand why.  We have been at times, very distressed about this but could find no reason or solution to this behaviour. She has been and is extremely well looked after and even she said that she couldn’t fault her care. This did make the LSO and I feel like servants doing her bidding and perhaps that is exactly how she sees us.

Upon reflection I think that when the AP came to live with us she expected to just slot back into a life that was similar to when I lived at home many decades ago; she would be a bit like ‘mother’ again and we would satellite around her along with our friends. But, of course this has never happened and never could as we have long since grown up, lived our lives and had little to do with our own parents in that time other than to visit, telephone and communicate on a very different level. Our lives were very separate and I do believe that this is where the whole problem stems from and why it is probably unresolvable.

She has interpreted our need to have some space without her as that she is not welcome. The AP wants us to gush over her and include her in every aspect of our lives which just cannot happen. She has over time become I think, more and more resentful of our apparent detachment and as a result has become really rather nasty with us. The lies? Well I can only put those down to the confusion of old age and the need to lash out.

I am watching to see what her next move will be. This morning she is pleasant enough, my brother has survived the night so we are praying he has the strength to continue recovering. We did have a rather strange conversation after breakfast about her reading the Kindle last night and not being able to take in a word. This was a bit of her ‘poor me’ attitude appearing and the start of more emotional manipulation but for the time being I will put that down to worry over my brother and not herself. I am aware though that leopards do not change their spots.

We will still look at care homes so that we are prepared.

Can things get any worse.

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I truly cannot believe that everything has escalated so rapidly. One minute I’m thinking things aren’t too bad, well, at least bearable and the next moment the old proverbial has hit the fan and with a vengeance. Am I just so naive that I didn’t see it coming?

Last night, sitting down with the AP to watch TV a trivial incident occurred over her hearing a bell ringing in the house, or so she thought, At that particular time no bells did ring but she insisted they had rung. We knew it wasn’t in the house and suggested that the sound might have been outside or perhaps the cleaners mobile. For some inexplicable reason the AP kept on about this making all kinds of things up. One being that no-one was around at the time which wasn’t true.  The LSO was there and he pointed this out, at which point she turned on him with real venom, told him that he was stupid and to shut up.

Oh dear, not a good thing to have said. No point in going into detail but suffice to say it caused untold damage. The AP did as she usually does in these moments and went upstairs to her room in high dudgeon. We made the decision after our astonished anger died down to talk to her in the morning.

Morning came and she did, surprisingly, apologise but to me not the LSO. A first but sadly too late. We tried to explain that it was unacceptable behaviour but she ended up in complete denial along with a string of lies about what the LSO had said in the past and to cut a long story short that she has never felt welcome anyway since day one. Well that went down like a lead balloon. So we have just wasted four valuable years in the latter part of our lives to look after this ungrateful woman.. I guess that was the final nail in the coffin for me and I realised that she can no longer live here. I have started the search for a suitable care home but feel utterly defeated. We perhaps could have saved the day but for the last comment and now there is no going back.

Can things get worse? Indeed they can. My brother is undergoing emergency surgery today on a leaking aneurysm and has asked that we don’t tell the AP. We are just praying for a good result.

What is the point?

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This is a question I find myself asking more and more these days. Today is my birthday and although at my age it is just another day I suppose I still would like it to be a little special. Well I have my wish, it has become special but not in a way I would have liked. The AP has upset the LSO and the whole situation is trivial but it highlights, once more the growing problem we have looking after the AP.

She asked the LSO to choose and buy a birthday card for her to give to me. This was done by the way, in her presence whilst we were all out on a day trip . Now, I don’t know about anyone else but I always choose cards to suit the person I am sending it to, conveying the right message I would hope. The LSO chose one he knew I would really like and showed the AP who wouldn’t have seen it clearly in the shop but will have pretended to see the image. She was duly given the card but once home it appears that the AP didn’t like the card chosen and told me today she thought it inappropriate and it wasn’t a reflection of her. It was a beautiful painting of a hare and I love hares. What did I get instead, a glittery, sugary Christmas card with a wreath as the illustration, in fact the same card as I got last year. Does it matter that that is how she sees herself or even that it is a Christmas card? No, of course not but the LSO is a little put out and on top of that he got no thanks! What’s new there then?

Yesterday we took the AP to the Shuttleworth Collection at Old Warden and had a lovely lunch in the Hare and Hounds pub in the village. This is all part of our attempting to make life better for all of us and when the birthday card was purchased. It was a good day out, enjoyed by all but getting out of the car I noticed the AP had a small hole in her tights and commented that perhaps she could do with me ordering her some more. Her response was that she couldn’t see a hole, although there was one in the knee apparently but her trousers hid it and then she proceeded to the front door muttering under her breath that I was basically talking rubbish. I am beginning to feel that I am living with the local bag lady and a vinegary one at that but if that is what she wants, so be it.

I must admit I do have trouble equating the vanity displayed by the AP with her refusal to buy a pair of tights. She can’t see herself but resents it when helpful suggestions are made by those who can still see.

Last Monday was the AP’s annual visit to the Health Practitioner at the surgery and it was suggested by the nurse that the AP should have a personal alarm.  Her response to this suggestion was classic; she didn’t need one as she has the LSO and myself and didn’t I agree with that? I certainly did not and pointed out that in nearly four years the LSO and I have been out, on our own, at night twice although that is not counting the 5 weeks a year my cousins have her staying with them. No, just the other approximately 190 weeks and it would be a real treat to just go to the cinema and not have to worry. Leaving her alone for one hour is difficult enough but anything much beyond that is not possible.

It was also suggested that there are various places she can go to meet people and enjoy cakes and biscuits and a chat but that fell on stoney ground as our conversation during the trip home in the car illustrated. But there is a glimmer of light on the horizon, a lady will be coming to visit the AP at some point to explain what is available.

 

Eyes wide open.

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When we are young there is a sense that everything is further away. After Halloween and Guy Fawkes night the next big celebration is Christmas but when you are small that seems to be ages away. When you get older time seems to fold in on itself and fly by.

Except now. Time only flies for the LSO and myself when we are enjoying ourselves and that is when the AP is away. The rest of the time we are constantly aware of this shadow in our midst.

I was dwelling as usual, on the predicament the LSO and I are in and wondering how on earth we allowed this to happen. What seemed like a good idea at the time has become a living hell for us, trapped in our own home and living with a stranger who tries to control and dominate us.

We thought we entered into this with our eyes wide open but we really hadn’t a clue what we were up against and once again it comes back to the fact that we really do not know our parents. I saw my mother as someone I could talk to, lean on when I needed or thought I needed support but where has she gone? Looking back I realise that she was probably a domineering parent when I was a teenager but I was too young to recognise it or to analyse it. After I left home any visits were short and sporadic and there was no time for such a critical attitude.  She can be pleasant to be with when she makes an effort but as soon as she feels thwarted or misinterprets something that is said to her it all changes. This does not make for a comfortable existence as we never know when the tide will turn and this spoilt, demanding, childish and selfish person arrives back in our midst.

I think the worst thing about the whole situation is how she makes us feel so guilty. As if we are not allowed to have any freedom or fun on our own. If she can’t do it why should we seems to be her agenda. The fact that she has had her life and is now pushing 100 years appears to have no bearing on anything. The AP is determined to make us live at her level and sadly we have allowed this to happen. We realise now that should have laid out the parameters in the beginning.

But this must stop now.

We are trying to follow our own advice and not allow her to antagonise us or rather not rise to her baiting. Easier said than done, but so far though things are slightly better and the AP is being kept in her place. Even the LSO is making an effort and not being defensive when the AP has a dig.

Heaven knows how long it will last but we do need to keep this up. More changes are on the way and she will kick a bit but our sanity and quality of life are more important.

 

An uphill struggle.

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The AP has returned and the dear relatives who have looked after her for a month have departed homewards and I feel so down. There are no words to explain this sense of utter despair that has overwhelmed me. As I prepared the dried fruit for my fourth Christmas cake I could have cried.

The AP has not returned in any way nicer it would seem, in her attitude towards the LSO and myself and has already started using the basilisk stare as if she hasn’t heard a word that is being said to her. When she doesn’t respond we explain again to be told with a screwed up face that she has heard everything. This is not easy. Her sweet little old lady pretence slipped at breakfast time in front of the family but a quick recovery was made although her attitude had been observed.

The minute they had gone she headed up to her room. I do not like what this woman has become and am at a loss to know how to deal with this situation. Somehow I must find the mental strength to rise above this terrible feeling of despair and gloom but how on earth do I do this. I have never been someone who wallows in self pity or enjoys being down and depressed. I have always felt that life is worth living and managed, despite difficult times in the past, to pull myself out of being miserable and have found something positive to hang on to.

This time I am really struggling.

I also wonder how much of this extreme emotion is because I have been told I am a Type 2 Diabetic. Maybe some of my reactions are down to the fact that I have just been put on medication to help control the condition as my attempts at dieting have made little difference to my blood sugar levels, in fact the very opposite. I have only been taking these pills for two days so I doubt they are doing much yet and I still have to endeavour to lose weight.

I guess part of the whole problem is the enormity of what I/we are dealing with but if someone else was saying all this to me what would be my reaction? Well, I know I would say two things and one would be to not look at the entire situation as a whole all the time, take small manageable steps in the right direction. Then the other piece of advice would be to take each day as it comes. There is no point in doom and gloom and misery is catching, of that there is no doubt. It is time to man up or in my case woman up and despite the uphill struggle, deal with everything, stop wallowing and follow my own advice.

I have just read through what I have written and actually feel slightly better. What is it about putting down feelings in words that is so cathartic?