November 2017 – Shrinking Horizons

Finding some freedom.

Its a week since I wrote anything in this blog diary but it’s not because I didn’t want to write but mostly that everything is so damned depressing. I really must find a way out of the feeling of doom and gloom that is shrouding the LSO and myself.

Just to put the final touches to these feelings of misery I caught a really violent tummy bug that is still attempting to linger on four days later. The up side to that, if there is one, is that I have lost some weight and the LSO became Captain Dettol!

We really cannot blame the AP although her presence is a big part of the situation but she is not to blame for where we are now, we did that all on our own. We really had no idea what we were doing when we suggested that the AP comes to live with us four years ago.

The AP had always appeared to be a thoroughly social and outgoing person but we soon found out that the reality is exactly the opposite. She is highly critical of others and at times quite malicious about our friends basing everything on what she sees as a slight against herself. My god, who is this person I am writing about, I am shocked and horrified to say it is my mother, heaven forbid that my own children would feel this way about me or the LSO.

She has a better social life than us but that wouldn’t be difficult because, at the moment we don’t have one. The highlight of last week was trip to the bottle bank! Unless we instigate outings with the AP or arrange for her to go anywhere she will do nothing to help herself, just sit in her room watching television or staring into space or nodding off in the chair. That’s all ok and to be expected at 99 years of age but the downside is her attitude and general demeanour when spending time with us. The AP becomes bored and wants entertaining, like a child really. She gets everything mixed up now and is forgetful but is equally insistent that her absolutely wrong statements are true, refusing to accept the correct versions of events even when they are about us and not her. Her own mixed up memories of her life are no problem but it becomes more difficult when she makes incorrect statements to visitors and family about us and others. It’s all very sad really but in the meantime our lives are slipping by in this fog of extremely slow moving boredom.

It’s easy to think that we should snap out of this but it is becoming increasingly difficult. Before her arrival here we never stopped, we went out and explored, socialised, laughed a lot, the LSO did his printmaking, fishing and enjoyed his gardening. I painted in my studio, even selling the odd one, enjoyed my experimental cooking, the joy of living here and of course my bread making and now? Well it’s all too much of an effort.

We are trying so hard not to be resentful but I think we should put our energies into being more determined to change our situation and start going out more. There is a whiff of wallowing that can become habitual and we do need to stop that in its tracks. We have contacted the Careline that supplies the personal alarm and key safe but as yet no-one has come back to us. That should at least give us some peace of mind when (not if) we go out. We must also ignore the inevitable guilt trip the AP will put us on the minute we do it.

Well here’s to at least some guilt free freedom at the end of the rainbow that would be more welcome than a pot of gold.

When the loss of a sibling becomes a memory.

Death touches us all at some time and it is never an easy place to be. We all have our own ways of dealing with the inevitable sadness and grief that the loss brings and all our different ways of coping are equally valid. In my case I cope by putting things into compartments until I am ready to peek under the lid. Up until now I haven’t been able to look at how I really feel about losing my brother. The initial news was inevitably of shock and that creates a kind of numbness. Then there is the empty space between the news and the final farewell. Funerals are strange and for me, stressful events, an odd mixture of pleasure at seeing family and friends and huge shared sadness.

I loved my brother, he was older than me and did everything before me including marrying and having a family. I was never in any rush to have my children and enjoyed the freedom the LSO and I had in those early years. Probably just as well as now we look after the AP, we have no freedom.

But back to my older brother. He was always there somewhere in my life. We never felt the need for constant contact and lived at either end of the country but distance and the passing of time never seemed to matter. When we met up or talked on the telephone it was as if we had just seen each other recently. During the last two years the LSO and I were able to enjoy some quality time with my brother. They had always got on well together and enjoyed each other’s company both having similar interests in fishing, shooting, the countryside and dog walking and for that I am truly grateful. I guess there are regrets but they are not worth dwelling on, the past is the past and should stay there and even looking back there was nothing any of us could have done that would have changed things.

I know that I must treasure the good memories and they will always be with me. I don’t want to hide away nor do I need too much sympathy as that makes me a bit weepy. I don’t believe in wallowing as that can turn into self pity. I have always approached most things in my life in an utterly practical and mostly positive way so I will carry on as I usually do but keeping a special place in my heart for my memories of my brother.

In search of serenity.

I realise now having reflected long and hard about my current state of being that I am in need of finding some inner calm.

Another quote sprang out at me, again author unknown. ‘Peace of mind is not the absence of conflict from life but the ability to cope with it’. How true those words are.

Since the confrontation with the AP and the sad death of my brother I have felt myself withdraw emotionally from everything, falling almost into a state of depression. I feel an enormous loss not just because of my brother having gone but it has highlighted once again the loss of the life the LSO and I should have been leading during the past four years. The freedom we should have had whilst we are still fit and young enough to be able to enjoy so many different things. I feel as if I have and am just existing and really not coping very well with the stresses and strains that looking after a 99 year old brings and this doesn’t even include the acquiring of a metabolic as well as an auto immune disease during this time.

I feel some relief in that although some of the confrontation with the AP a couple of weeks ago was unpleasant, we at least were able to say the things that needed saying without angst on our part.

Generally there has been an improvement in her attitude and behaviour and if that sounds like I am discussing a recalcitrant child you would not be wrong because the AP behaves like one when unable to get her own way. Unfortunately one of the problems of having someone so old living with you is the inevitability of accidents. This time it has been the leaving on of the hot tap in the bathroom and the flooding of that room causing water to pour through the lights in the living room. Water has also seeped out onto the landing and into the bedrooms on either side. The AP hates to admit to being in the wrong and even now is trying to put the blame somewhere else when only she can have done this. It’s an accident and we all know accidents happen but it could have had much worse repercussions and I am just thankful that we were here. I will not be blackmailed with how awful she feels about it, just a simple ‘sorry’ would have been enough not the silly comment that ‘there must be something evil about’.

I now need to put in a coping strategy. One which can help all of us and in particular the LSO who has a long memory for injustice.

When the end comes.

Death is the most inevitable part of life but most of us try to ignore it and even treat it with fear. My brother died last night and although we were prepared it still comes as a shock, someone who has been there all my life has gone. Then of course there is the moment at which the AP has to be told that her son as died and that is a hard one but must be done.

I find no solace in copious weeping because that just leaves me feeling utterly destroyed. My own father died when I was 36 years old and that was hard but death puts things in perspective. I discovered then that the things I thought mattered had little relevance and I was able to reflect then and now on what really does matter.

Perhaps one of the saddest things of all is the fact that we don’t express our true feelings enough during life and these facts are accentuated with death. But in truth these feelings of grief are only for ourselves. We must be true to ourselves, love people for what they are and be honest about our feelings.

I found this wonderful piece of writing that seems to have been around for a long time but no-one knows who wrote it.

‘Every Light Carries the Ray of Hope’

‘Seek to always keep the light of hope lit for yourself. During those difficult times, the sad times, resolve to keep that light on, no matter how dim life tries to make it.

If you are struggling right now, if today you find yourself overwhelmed by life or besieged with doubt and fear, keep hope close. Know that the flame of strength and confidence to overcome anything lies within and is always there just waiting to be lit.

So today, calm your mind, spark your light of hope and embrace the challenge of the day, recognise that you are going to be ok, know it, feel it, believe it.’

Today is a time of great sadness but not a time for regret. It is a time of fond remembrance and reflection. It is just so important to appreciate what is in our lives and realise that life is to be treasured, enjoyed and lived without illusion or recrimination.

Is there hope on the horizon?

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.

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.

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.

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?

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.