Week Forty-Two

I don’t think I ever really knew what she was thinking or feeling,she held her cards close…

Sunday evening I got a message to say that Mum had fallen out of bed and landed on her head. The call came about 8pm, so I have been wondering…If she gets up at 4pm after her post-lunch nap, has her supper and then joins the others in the lounge, how could she be found on the floor of her bedroom before 8pm? Had they not brought her down for supper? Or had she had the accident earlier in the day, but only just reported it? I’m also not sure how she could have fallen out of bed. I usually find her cocooned by pillows, with the ‘cot-sides’ up as well. If she had struggled to get out of that, she must have been left unattended for a very long time. I have not seen Mum make that amount of effort or movement for many months. Apparently she has been checked over and she is okay, but I would like to ask a few questions.

***

I felt deflated today. Mum was in the lounge again, but her eyes were closed and I got no response from her at all. No talking, no walking, only tears.

I was able to stay and feed her her lunch – it seems she only gets pureed food now. I must find out whether that is for ease of the staff feeding her. If it is, I could request proper food on the days that I feed her myself.

I asked about the accident – it seems that they do get her up for supper at 4pm, but then they take her straight back to her room afterwards. That means she spends about 18 hours a day in bed. I don’t think that can be good for her, but I do appreciate that it is difficult for them to manage her if she’s constantly sliding onto the floor. I’m sure there must be some chairs that can support her better and keep her in the land of the living…I hope someone puts her music on for her when she’s in her room for so long…Apparently there is now ‘no way’ that she can fall out of the bed again.

***

Saturdays seem to be the best days for visiting Mum. Today we had success with a walk-about and a certain amount of joy. I found her nearly on the floor when I arrived, but she hardly slipped at all whilst I was there. She does cry a lot. Sometimes with joy, other times with pain, fear, sadness, nostalgia… even some seeming recognition of something provokes a tearful response. It makes me sad when my own words and endearments cause her to sob. In some inexplicable way she seemed to be glad of my company today.

I spoke again with ‘commentary Kate’ who remembered Mum’s arrival. She said how Mum ‘can’t seem to bend in the middle’ and could really do with a different sort of chair. It’s satisfying to be able to say hello to the residents and offer them a smile and company.

***

Kate is right, Mum doesn’t ‘bend in the middle’. She was crying a lot and nearly on the floor again today. Also there were what seemed like cries of pain, but she cannot tell me where the pain is, so I feel quite helpless.

Last week I asked if it was her head that hurt and she said it was. It is so difficult to diagnose anything because she cannot communicate reliably.

I mentioned it to the ward nurse and she said she’d ask the doctor to check her over and maybe leave a prescription for some paracetamol. I asked them to check that she wasn’t sore from the incontinence pads and to check in case of a urinary infection, which she is prone to.

I did get Mum to walk a bit today, but she stopped a couple of times and made as if to sit down. Fortunately on both occasions I was able to pull a chair underneath her just in time. I fed her the pureed meal and blancmange again, whilst looking enviously at Steven’s braised steak and vegetables, followed by apple pie and custard. I really must remember to ask about the food.

Steven and his wife are both over 90 and have been married for 69 years. She comes every day to see him and is so lively and encouraging. It is so much more heart-breaking when the sufferer is aware of the suffering. I am not sure whether Mum is now suffering or not. Whether she suffers in silence, trapped inside her head and body or whether she just exists in each moment oblivious of the last, I’ll never know. But I know she sobs a lot and that makes me sad, because I don’t know how to help.

***

Mum looked particularly pretty, freshly bathed and fluffy, but very grumpy today. I couldn’t get her to walk – I asked and she said no – and seemed to mean it.

I asked staff about the doctor – apparently Mum has nothing obviously wrong, but she still seems to be in discomfort. I also asked about the pureed dinners. The nurse looked through her notes to find that Mum came to Sunny Meadows with instructions from the hospital to have ‘soft’ meals. We talked it through and I requested proper food. Thankfully, I was then able to feed Mum braised steak, carrots, brussels, mash and gravy, followed by rhubarb crumble and custard. Yummy. I could tell she was enjoying each morsel as I named it and put it in her mouth. Some success today!

On my way out I saw the manager, who is clearly aware of all the issues. She said they had tried a beanbag for Mum to sit in, but that it didn’t work. I asked about the harnesses that I remember seeing at Gold Acre. She has never seen them but will look into it. It is a problem that needs solving as it causes Mum and the staff an unnecessary amount of stress. I also managed to manicure Mum’s sharp claws, which do get sort of locked into one’s flesh!

Monica wants to come with me next time. I went to see her today, after seeing Mum. She has her son and his partner staying to look after her, so that is good. She was in some discomfort, which is to be expected after such surgery, but she is much more positive about it all now. She told me lots of stories about my family too – on the Haynes’ side. I know I’ve heard much of this from her before, but I don’t seem to retain the information long enough to absorb it properly. I love Aunty Monica very much.

***

The NHS Involvement Strategy Group do not meet very often, but the aim of the group is, as the name suggests, to ensure greater involvement between all the stakeholders in the NHS service. That should mean making sure that views and opinions of the service users, carers and staff at all levels are heard and taken real note of in the policies and practice that then ensue.

I am still thinking about what a carer shared with me at the last NHS Involvement Strategy meeting – he has been caring for his wife at home throughout her journey into dementia. He had to give up work four years ago to do this properly, but does have the support of other carers coming in to help.

He has been seeking advice on what happens at the end, having understood that with Alzheimer’s, the sufferer loses the ability to swallow. Apparently, life is not prolonged by feeding through a drip or peg, so the person is left to starve to death. He said it takes about nine days. He was asking if, when the time came, he could give his wife something to end her life painlessly and not have to watch her starve to death. He reasoned that if you allowed a dog to starve to death, you would be imprisoned. He didn’t get a favourable reply from the medics and the thought of watching her starve is clearly bothering the poor man.

It is such a tough question though. Can you ever condone putting someone out of their misery/ending their suffering/playing God? Does a dying person get the grace they need to cope? Do they drift into euphoria with the hunger as they approach the gates of heaven? I don’t know. I suspect that dying is not as bad as we fear. I am not afraid to die. I am afraid of unbearable, torturous pain, but not afraid of death. I look forward to the resurrection, to being with God and understanding some of the immense mysteries that life on earth has kept veiled…I’m not in any hurry to leave this life either – it’s such a beautiful world and I love so many precious souls here. I don’t think I’ve yet done as much as I might either. None of us is indispensable, but there is a task just for me and I need to find it and get on with it.