being a carer – Shrinking Horizons

The case of the hopeless dieter.

This title sounds like a story from Sherlock Holmes but sadly the problem will not be solved as easily. My body is not responding to the low carb diet, I am not gaining weight but neither am I losing any. My glucose levels aren’t brilliant either so maybe the new drug isn’t working as well as it should or maybe it just needs to be a higher dosage.. it’s early days and my next set of tests are two months away. The LSO sent me the picture above which he called “Skinny Pole’ which is definitely not me. Funny B…. but you have to laugh.

Maybe I need to look at portion control and use a smaller plate for my meals, it’s certainly worth a try. I also am aware that this long, cold and wet winter is not helping. I hate mud so I am not walking the dogs with the LSO which is something I need to address but this little voice in my head says ‘when the weather improves’ but I have been listening to that voice for several months now.

The imposed institutionalisation as a result of being the AP’s carers is difficult to shake off and I am aware that I have become disinterested in a great deal that made my life tick before she came to live with us. Five and a half years of being trapped have taken a heavy toll. Her nastiness, vindictiveness and her cunning controlling ways have left a permanent scar that isn’t going away easily. The fact that we have to visit the AP in the care home has become a necessary chore and something the LSO and myself both dread. We never quite know what we will find when we get there, today she was in bed, in a deep sleep so we left her requested boxes of tissues and came home. There is no point in waking her as we have found to our cost in the past because all we are met with is confusion.

She will be one hundred and two years old on April 30th. Will she make it, who knows? She is just a bag of skin and bone, drifting in and out of a kind of dream world. It’s sad really because although she is well looked after she is just existing, waiting for the inevitable to happen. Being cynical, I guess it’s in the care home’s interest to look after her well as it guarantees another week of fees which are going up in April a mighty 5.9% from £1070 to £1133 a week.

I wish our pensions did the same!

In search of willpower.

Certainly something is needed, a new body would help but unfortunately I know it is in fact just willpower I am lacking and at the moment I am having trouble finding any.

I am loving having our lives back and although I also know it is impossible to have back the past five and a half years I keep wanting to do all the things we couldn’t do then, immediately, especially enjoying meals out. This is definitely not conducive to weight loss and at the moment I haven’t gained any extra pounds but neither have I lost any and I am far too heavy.

This last week we have both been recovering from further bouts of illness with the LSO catching a really nasty and lingering cold. I cannot remember the last time he had one but it seems as if we have both relaxed and perhaps we have allowed ourselves the luxury of being unwell. We decided to have a few days away in the Lincolnshire Wolds, taking the dogs with us, partly because we needed a change of scenery but mostly because we could and it was an extremely pleasant experience. We both relaxed and enjoyed the peace and lack of pressure and have returned home in a much more positive frame of mind.

Unfortunately we did have to visit the AP which is always an effort. We sit there listening to her continual stories and moans trying to make some kind of conversation but it truly is a lost cause. She is utterly wrapped up in herself and has become extremely rude and condescending about the other residents. Even in the home she tries to control us demanding that we get things for her when all she has to do is ask a care assistant. Frustrated that she is now out of the loop she makes ridiculous statements but we just nod sagely and head for the door and freedom.

A friend of mine told me that her cousin, who had been in a similar situation to the LSO and myself, struggled with feelings of guilt when her mother died, but only because she didn’t feel guilty about the loss, just relief. I can relate to that completely and do not want to even visit the AP in the Care Home, I actually feel resentful that this manipulative and divisive woman is still able to steal some more of our time. But those are fruitless thoughts and need to be extinguished, I am not like my mother and do not wish to become anything like her; in fact I can think of nothing worse.

But I do need to be more disciplined with eating and drinking in order to lose weight so its back to the daily tracker for starters.

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 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.

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.

Looking on the bright side.

Things are certainly changing for all of us. The AP is becoming dottier by the day and seems to be retreating into her own little world. We have had her getting ready to go to appointments on days when there are none, mixing up times and places and then making up stories to fill the gaps in her memory. Lately she has started to eat her food with her fingers and holds her head in one hand as if it is too much effort to lift it up all of which infuriates the LSO but she only does it with us. If we have visitors or are out for a meal she uses her knife and fork.

Yesterday she announced that Serena Williams was Venus Williams mother and further more it must be true because they showed pictures on the TV to prove it. We explained they were sisters and far too young to have grown up children but what do we know! I guess all of this is normal in someone of such a great age in fact we are lucky it isn’t worse. Although it is quite difficult to be wholly positive when trapped in this alternative reality both the LSO and myself fight not to become too down or despondent as time slides by at a snail’s pace.

It isn’t all doom and gloom though, the plants in the greenhouses are flourishing and I am making cucumber relish for the first time. Years ago we used to buy a Dutch version of this relish then it just vanished never to be found again so I am hoping that this homemade version will be a good replacement. The warm and sunny weather has encouraged good growth and this year our fig tree is bearing many fruits and those will be a joy to eat. At this point the LSO points out that the lawns and hedges are also growing at speed, but I guess, looking on the bright side, we do have some good things to look forward to.

The importance of gin.

In my youth it was Blue Nun that was considered the height of sophistication and if feeling really extravagant it was a bottle of Vinho Verdi or Chianti in a straw casing that people loved making into table lamps all bought from an Off Licence. Thankfully things have changed in more ways than one and in most cases for the better.

After the LSO has given the dogs their afternoon walk when, weather permitting, I occasionally walk as well, it becomes gin o’clock with the LSO as the ‘Gin Jockey’. I have only recently discovered the huge variety of gins available for the discerning and that was thanks to a cousin who lives on Vancouver Island B.C. On a visit over a year ago she brought me a present of a bottle of Rhubarb and Ginger Gin and it was a revelation. I have not looked back since and look forward to the evening when I will enjoy a delicious Bramley Apple and Rhubarb Gin, with ice and just a hint of tonic.

A slippery slope you may say! Most likely but a much needed anaesthetic to cope with the incessant burbling of the AP whilst we have a visitor staying. In fact I am writing this listening to a constant stream of rubbish, mixed up, made up and generally wrong with a smattering of truth. She’s just announced that she could go back to live in Newcastle if her tenant wasn’t there. At 101 years old, blind, doddery and unable to do anything for herself, she can’t even lift a kettle now and needs help showering and she still thinks she is capable of looking after herself. I find her attitude so utterly insulting, the LSO and I have just given up nearly six years of our lives looking after her and she is so utterly ungrateful and graceless. Will the AP ever accept her limitations, no I guess not but we are going to have to limit the amount of people staying otherwise I will become an alcoholic. It’s not even midday and my mind is thinking gin.

But in the meanwhile I am endeavouring to turn my mind off and keep calm in order to contain my frustration and irritation. We made the choice to have the AP live with us and we must survive the consequences. It is just such a pity that she has never appreciated what we had to offer. I heard her make a comment to our visitor about walking on eggshells but as I hadn’t heard the rest of the conversation I couldn’t be sure of what was meant. If she meant with the LSO and myself she should have thought twice about pushing us around because we stupidly put up with her behaviour for several years unable to comprehend her attitude but not anymore. This has resulted in a very unnatural state of affairs because we have come to dislike her and she feels we don’t want her here, but had she been the person we thought she was, enjoyed life with us, hadn’t tried to dominate and control us, it would have been a very different situation.

Wavering resolve.

Oh dear, my ability to stick to a dieting regime is severely compromised at the moment. I must stop wavering and prevaricating and get on with it. I am sure this must sound familiar to many people who like me, struggle with their weight.

Our trip to Essex was a delight and so was the meal at the restaurant but I am sure it broke all the rules of my diet. Also and much to my surprise the AP was on her best behaviour which was a surprise after the week before but then she has always managed to con this particular grandson and would not want to spoil his belief in his dear, sweet grandmother. Is he conned by her? I really don’t know but my daughter-in-law has few illusions but maybe that is because she is female and more astute. It’s a curious set-up really but one I find myself watching with interest.

Our next onslaught of visitors is this coming week and it is only one ex-colleague of the AP’s coming from Australia who actually married the AP’s boss. She is a particularly pleasant person but those high up in the world of academe have always brought the true snobbery out in the AP and this particular visitor is a Professor Emeritus.

Fortunately the LSO and I really like her and find her pleasant company so we don’t find the ‘below stairs’ activity too onerous but we will only have one lunch out to break up a day of burbling from the AP. I am still feeling a bit bruised and battered from her behaviour during our last set of visitors so have decided to cook. At least it gives me an excuse to be in the kitchen and I would like to think I will have more control over the food I consume. Did I say that? I spend most of my waking day in there, that is, when I’m not writing another blog!

Anyway I shall endeavour to stick to a low carb regime and try to resist the new potatoes grown and harvested daily by a neighbouring farmer although I feel my resolve will waver when I see them coated in a dollop of fresh butter, some sea salt and freshly ground black pepper.

…….a thankless task indeed.

Well, just as we think our situation can’t get much worse or depressing, it does.

My lovely cousins from Scotland have just departed after a four day stay with us and the AP. It should have been a great visit but the weather was awful, wet and chilly but that shouldn’t have made much difference, what did was the complete dominance of the AP. She was determined to be sitting in the living room, receiving as if she was the Queen, her acolytes circling around her whilst she burbled non-stop for three days; most of it was made up, mixed up or just completely incorrect. It was impossible to enjoy anything or even sit for long in the room because she just talked over everything. The LSO and I began to lose the will to live. Fortunately my cousin is a natural comedian and in between these times we did manage to have a good and much needed laugh.

In itself, the AP’s attempted dominance although irritating, shouldn’t have been a problem but when I overheard her saying that I was a bully it hurt. I am not a bully and never have been, the bully is the AP. Yes, I am firm about some things but they are for her benefit not mine and I also cannot allow her to completely wreck our lives although, in truth, she is doing a fine job of it at the moment.

When we went out for dinner last evening the AP called the LSO and I ‘pains’ and proceeded to lie about what she had said but it was in front of my cousin and his wife. Liz has no illusions about how unpleasant the AP can be and has been on the receiving end of it in the past when she has stayed with them but my cousin is never present when those moments have occurred so last night came as a bit of a shock. But enough is enough and I firmly told her what I thought of her comment which was absolutely uncalled for and just typical when she feels she is not getting her own way.

Unsurprisingly there was no remorse but she is cunning and when she came down this morning she was clingy and holding his hand like a child, trying to make a point no doubt but for me it was a case of ‘get me a bucket’. We have a carer coming soon to take her out until 6pm, but sadly it will continue to emphasise the problems for us as she will be fawned over and unnecessarily cosseted. She will play the sweet little old lady which she can manage for that length of time, then return to us and revert to the unpleasant and selfish person she really is.

My cousin has said she needs to go into a home and he is right but I did say we would get through the summer and reassess the situation and I will keep my word. He even suggested to the LSO, a care home in Scotland but I don’t think that he understands the full ramifications of that situation, or maybe he was just being kind. Fortunately his wife does understand and the LSO says there was a firm veto issued. No, if it’s a home it will be here but we will see what the future brings, the AP still has to have the basal cell carcinoma on her nose removed and we are just waiting for the appointment.