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The Start

This is the post excerpt.

Over five years ago we made a decision that was to change our lives completely. We suggested to my then 96 year old mother that she comes to live with us. There were sound reasons behind our decision as she was not looking after herself very well and was looking very weak and wobbly. We also felt that her relationship with us was good and vice versa and we would make this work. We really had no idea what we were doing; what we were taking on or how it would affect us.

An unexpected reaction.

Well, the AP is now officially a resident in the care home. The LSO and myself are hugely relieved for a variety of reasons, not least that we have our freedom back but what I now feel has come as a real surprise. She is well looked after there and seems to be quite settled which is all good.

I thought I might feel an element of guilt because I was so pleased not to have her presence in our home and also to have our space back but instead I realised that the main emotion I was experiencing was anger at having lost more than five years of our lives in such a miserable way. I actively did not want to see the AP and found this a most disturbing feeling. We are still discovering that we can do just about what we want and it struck both the LSO and myself that because we have been so trapped for so long we had actually become institutionalised. But yesterday having discussed how I was feeling with a friend who understood our situation I woke up this morning feeling much more at peace and far less antagonistic towards the AP. That has to be a positive and I am determined that the LSO and myself will make the best of the time we now have.

I have set a deadline for a new eating regime to begin on Monday; we have a friend staying until Sunday and after that I will start to attempt to lose weight in earnest. I have come to the conclusion that because no diet is really sustainable in the long run I will mix and match, starting with the 16:8. I will still do low carb but include on non fast days, a little potato or rice, potatoes because I really miss them and rice only occasionally because it definitely improves the gut function. Not a strict Keto because I will become bored with that and give up. I need to have space to enjoy meals out and to discover my love of cooking again which after the pickiness of the AP took a real battering. A return to swimming is a must as well as walking the dogs now that the stifling temperatures have reduced.

It’s a wonderful feeling to be looking forward to the future and to finally realise that we have reached the light at the end of the tunnel and it isn’t the train hurtling towards us.

A sense of release.

It is impossible to truly express the level of relief that the LSO and I are experiencing now the AP is finally being looked after in a care home. We have a meeting on Tuesday with the manager of the home and hopefully a future plan will be put in place. The AP is very poorly now, the weeks of refusing to eat properly and being sick have taken a massive toll on her both mentally and physically and she has become extremely weak, unwell and struggling mentally. We are just thankful she is where she is because we could not be doing what the assistants in the home are coping with, she can just about walk with the assistance of a frame, is unable to leave her room at the moment and moans continually about how poorly she has been. Am I lacking in sympathy? Perhaps a little, having witnessed the pantomime of the past eight months, her ridiculous desire to have something wrong to get attention and the pressure that has been brought to bear on the LSO and myself. I certainly knew I had reached the end of the road and that changes had to be made.

But it is still sad to see how quickly she has deteriorated although having said that, there is still a spark of spleen in there. We arranged for the chiropodist who has done her hands and feet for the past five years to continue to do so by visiting the home. She doesn’t normally do home visits but agreed to this one. The AP’s response wasn’t ‘how kind of her’ or ‘I and so pleased about it’, no it was a vinegary ‘she will be hoping to get some extra work from the visit’. I certainly don’t miss this unpleasant aspect of the AP’s personality.

But for the LSO and myself it is lovely to have our space and our lives back but after so long being trapped in our own home we are finding it a slow process adjusting to our new found freedom and the fact that we can make spontaneous decisions. We have even booked a short three day week break in October in a holiday home in the Lincolnshire Wolds that allows us to take the two dogs. This is heady stuff!

The other situation I must address is my need to lose weight, the past six weeks have been so difficult that I have done little to keep on track but after this weekend I will start in earnest. I need to reduce my carb intake again, cut down the alcohol because I am no longer in need of the anaesthetic effect and also endeavour to do some fasting. I am at least back to doing some walking with the dogs which is a plus point.

A watershed.

There are few words that can describe the last six weeks. We have somehow weathered the AP’s childish attitude and tantrum that put her in hospital for sixteen days. After numerous blood tests, chest and stomach X-rays and finally a CT scan of her head there was found to be nothing wrong with her other than the fact she is a hundred and one years old and suffers from arthritis. Inevitably there has to be some degradation at her great age.

The vomiting, the inability to eat and finally the ‘EXCRUCIATING’ pain in her leg have all vanished. So what was it all about? Incredibly it would appear to be a perceived lack of attention from us and all in general that created this unstoppable hysteria. Needless to say she has done herself damage both mentally and physically but she seems to be happy enough after her first week in the home, getting lots of attention and with people around her. There have also been friends and family visiting most days which has eased the pressure on the LSO and myself. These are all plus points because the AP will be staying there, she is just too frail for us to care for her now and we need our time and space back.

We are now just starting to come down from what has been five and a half years of misery, of being utterly trapped with no personal space and no privacy. But the most interesting outcome of this whole sad business has been the knee jerk reaction from various ‘friends’. The minute the email went out saying that the AP is now in a care home having spent a couple of weeks in hospital, we had several responses from people wanting to rush over and inevitably expecting us to entertain them in our Irish B&B, they stay, we pay. Where were they all when we really needed help? When the LSO was seriously ill two years ago, did anyone offer to come and get the AP, take her with them for a short holiday to give us a rest and the LSO an opportunity to recuperate? No, of course not. They were all happy to use us as a staging post, an overnighter with full board included and apart from my cousin and his wife in Scotland there were no offers of any real help from anyone else. Now she is in a home and we don’t need help they are wanting to rush here having made little effort for years and all because she might be about to depart this mortal coil. What a sad state of affairs, at her age it could happen at any time.

Fortunately those who have made an effort over the years have given a more measured and thoughtful response. Some have commented on the need for us to find tranquility and others have emphasised the importance of making the most of our freedom and enjoying life together. There has also been the understanding that we have done so much above and beyond what was required and they are thankful we were prepared to do it. Actually sacrifice is more a word I would use since the LSO and myself have lost a large slab of years at a time when we couldn’t afford to lose them.

I probably sound to anyone reading this to be bitter and twisted but at the moment I am tired and emotional, still experiencing anxiety attacks and in need of a real rest and a break. Fortunately time is a great healer.

Hopefully a final solution.

What an emotional and physical rollercoaster ride the LSO and I have had for the past month. The AP’s stay in hospital has continued despite the continual discharge notices being sent to the social services but we have almost reached a final solution. It has been a laborious and painful process with the minimum of assistance from those who are supposed to be in a position to help and constantly maintain they are but I can assure anyone reading this, that it is definitely not the case.

The constant vomiting and apparent lack of desire to eat have left the AP thin to the point of emaciation and weak. She was wobbly before but now is much, much worse. The hospital, occupational therapists and social services wanted to return her to us but since she is now unable to get up or down the stairs she would be isolated in her room with little stimulus and few conversations which had been a small part of the problem before she was admitted.

We have learnt so much in the last few weeks and in particular that the current system does not want to hear from us as the carers and will not do anything to help our situation. They suggested social service carers coming in the morning for an hour and in the evening for an hour for two weeks to assess her situation leaving the other twenty-two hours every day for us to deal with and then we would need to bring in a private care company. The AP is now unable to even shower on her own and has had several falls before going into hospital and we are no longer young or fit enough to cope with this. Anyone planning on taking an ageing parent into their home to care for them, don’t do it. After five and a half lost years we are definitely tired and emotional but we had naively thought there was help out there but if, like the AP who resolutely refused outside help or going into respite care you are really stuck between a rock and a hard place. There really is no proper constructive help out there and as carers in our own home we have no rights. It’s a shocking revelation and it is so very, very wrong.

After much stress and a seventy-three mile trip to the hospital every day I realised I had really had enough but nothing about our situation is simple. We knew that the best solution was for her to go into private respite care for a month at least and then we would see how she was and play it by ear but the AP has to agree to do this otherwise we would have to have her back. We have no support at all even though it is patently obvious that she cannot do anything much for herself at all.

Well, surprisingly, after a care meeting at the hospital she has agreed to it and on Monday will be taken straight to the care home in hospital transport. This is a truly expensive option but she really does need proper care and supervision and we need our lives back.

Hopefully it will be the final solution and she will enjoy the care and attention and we are only six miles away.

A creeping suspicion.

Well, it is just as I suspected, the AP has been pulling the wool over everyone’s eyes and she is being discharged next week from the hospital and will be returning to us. I had my suspicions when we visited a couple of days ago when I realised she was loving all the attention. She kept saying what a dreadful night she had had and how excruciating the pain was but looking at her belied the true situation and a creeping doubt entered my mind that the whole situation had been manufactured by her. Maybe not completely contrived but I think once she realised she had everyone’s undivided attention she began to milk it for all it was worth. We spoke to the consultant yesterday to learn that even at one hundred and one years old there is not much wrong with her apart from arthritis that was now in her knees and some mental degradation. He also said that she was being very economical with the truth and although he understood our situation she did not come under any umbrella that would remove her from our care.

To give the hospital their due they are having her assessed and looking at the possibility of some kind of care package but I don’t think she will be eligible for one which will mean us going down the private care route.

The consultant told us he had suggested to her that a spell in respite care would be good for her as well as give the LSO and myself a break and she refused to even consider the matter saying that she had had extensive discussions with us on the matter. Really! Obviously the LSO and myself weren’t present at these ‘discussions’. So the hysteria, histrionics and dramatic expressions such as ‘this really is the end’ and ‘I know what is coming and I’m ready’ are all just part of the drama queen that is my mother and everything was manufactured just to be the centre of attention. It is devastating to think that my own mother would be so devious, so inconsiderate and so selfish but it has backfired on her. When we visited yesterday I told her the consultant had rung me and then I asked her why she had refused to consider respite care. She completely denied that it was ever even mentioned but her response was too quick and I knew she was lying.

So we had a frank and open chat with her about the fact that the LSO and myself need to have some life before it is too late and after much prevarication, more lies and more excuses with a bit of blackmail and smoke screens thrown in she has reluctantly agreed to let us sort out something that will give us some space and ensure she is looked after. It may not be spontaneous but it will at least allow us to escape occasionally.

Roll on!

Welcome to the machine.

A favourite expression from the LSO regarding hospital stays and he’s had a few of those. Now he’s experiencing the entry to this alternative world as a visitor. Our day pivots around the inevitable hospital visits, the parking problems and the sixty mile round trip.

The AP has been admitted to hospital finally after a series of Doctor callouts, daily visits from Community Nurses as well as the inevitable emergency appointments at our local hospital.

Difficult to know which is worse, the old situation or the present one but I guess the former because we have realised we just cannot deal with the AP’s care any longer especially if it involves twenty four hour care. We are not experienced enough and too old to continue and she may need considered and proper palliative care now.

Having given up five and a half years caring for the AP we are finally reaching the end of the road and need to look after our own welfare if we are to enjoy the time we have left. Does that sound selfish? To some maybe but they have not walked in our shoes. It isn’t an easy decision to make and possibly impossible, the machine doesn’t help carers like us but somehow, for our own sakes, we must stick to our guns and not be pushed around by a system which so far has not helped us at all and in fact has failed us.

The AP was admitted on Friday and has spent the weekend being observed. Hopefully today we will finally find out what, if anything the doctors will do to ascertain what the problems are. There are no obvious pointers but clearly something is going very wrong and it could be that she is simply very old and parts of her body are shutting down.

It is unlikely that much can be done because of the AP’s great age but equally there is no-one out there to help us. We could still end up with the AP back here but if that is the case we will be arranging for care so we can go out and escape this imposed exile.

Who will she be today?

I wake up most mornings now and wonder just who the AP will be today. Will she be a waspish old harridan, will she be feeling off colour, will she be complaining about the cold, the heat, the damp, the greyness or will she be a little ray of sunshine and full of bonhomie. Don’t be silly that behaviour is saved for others, certainly not the LSO and myself; we are the servants, the below stairs staff, the chief cooks and bottle washers, the bed changers and cleaners. We are frequently referred to as ‘he’ or ‘she’ rather than by name. One example of this was when I had washed a very expensive shirt that the AP had managed to drop tartar sauce on during a lunch out with us. The shirt had been a present to her from the LSO and myself and I didn’t want it to be wrecked. When the LSO returned it to her all he got was ‘oh good, SHE has washed it’ no name and no thank you.

Yesterday the AP was taken out for a few hours by a carer we have employed, who will also be helping her with the weekly shower as from next week. Her first words to her on arrival were that she has had a couple of bad days. My first reaction was one of surprise and I explained to our visitor what the problem has been. Lately the AP has complained that her left leg feels cold with sometimes a pain in the calf which appears to possibly be a pulled muscle but is most likely, simply the result of lack of activity and a slowing circulation. Inevitable at one hundred and one years old. Sadly we do make a meal of the least little thing trying to be the centre of attention and apparently wanting to be ill. The AP has no idea what a bad day really is, in health terms she has led a charmed life with very few illnesses and nothing hugely serious.

These small irritations do build up especially when the carer brings the AP back and we are told how marvellous and gracious she is and what a conversationalist. Really! Yes, I know it is to be expected, how could they possibly know the true situation but sometimes I just wish I could put these people in our shoes for a month or two for them to discover just how two-faced and hypocritical she can be. They see her for a few hours, we have her the rest of the time and she makes little effort with us. We are relieved when there is snooker or tennis on as she can only see the television screen in her room and we don’t have her sitting downstairs staring into space. We have heard the same stories over and over again which I suppose to anyone not seeing much of her must sound convincing. But the truth is most are now elaborated on or mixed up and often untrue, just made up to fill a gap in the memory.

During her time out she pretends to be in control and even eats things that she would never touch with us. Yesterday it was a brie and cranberry panini with salad, a panini, a crust with a little bread! Salad is usually looked at with horror and pushed around the plate. She won’t eat anything with us that she considers too chewy, crusts have to be cut off bread, vegetables mashed, she often won’t use her cutlery, picking her food up with her fingers and holds her head in one hand as if it is all too difficult to cope with especially if she has to chew a little. She also hides food in her napkin and rushes to the bin with it after the meal. I am sure she doesn’t do any of this when out with the carer and her husband and thus they have a completely false image of who the AP really is and although they will never know what she is really like it is very galling for us. We just get the rubbish.