This article was written for Annabel & Grace, which is now part of Rest Less.
Grace is always telling me I talk a lot (or maybe she means too much). Ellie says she loves to phone me ‘cos she knows we will just rattle on for ages and when the call finishes she always feels better. My Dad used to say that I could talk to anyone which he loved, probably because I inherited that characteristic from him!
However I have to tell you that I am, for once, at a loss for words. Or at least I was yesterday as I took my elderly mother (with Alzheimer’s) to have an iron infusion at the local small community hospital. I just want to point out that the NHS is working very well at this level, the staff are caring and happy, the hospital clean and the service very efficient, so please can someone tell Ed Miliband that it is not all broken – just some parts.
Anyway, I digress. I picked my Mum up from her nursing home at crack of dawn in order to get in early to the hospital. She was not feeling at all well, very dizzy and ultimately car sick, so we had to stop a few times. We then got to the hospital and she could not get out of the car. Luckily a nurse came to our rescue and, with a firm but kind manner, she got her out of the car and into her wheelchair. I had to leave her to go and find a parking space, about a 10 minute walk away, which meant that by the time I returned my mother was confused and frightened and so needed much reassuring.
Finding a vein was painful and difficult and by the time the infusion was up and running she was very tired and in a lot of back pain. This is where the talking (or lack of it) kicks in. I tried to talk to her to take her mind off everything, but it is so hard to converse with someone who has no memory and no interest in the future. You can only talk about the here and now and that quickly runs out. Earlier we had driven past a house that she had lived in for 20 years but nothing….
If I tell her about my family her eyes glaze over and I know she has no idea who they are. She has forgotten her own children as, when asked by the nurse how many she has, she said just one daughter. That is probably because I am the one who lives closest and so I see her regularly. I am not sure she remembers my name, just that I am her daughter. I went off in search of some nice coffee for her and found the local garage with a Costa franchise, risked life and limb crossing back to the hospital over 4 lanes of busy road carrying two cups of hot lattes, only to be told by my mother that she couldn’t taste anything.
Should I be taking her for these blood and iron infusions, or is it all too much for her? She returned to the nursing home and I got a call from the head nurse saying she was in a state and could I come over. My mother thought the nursing home had been taken over by people she didn’t know and there was someone living in her room.
I think she just wants to be left alone and not interfered with medically so that her life is prolonged and for what reason? However, who am I to know? I am just her daughter, but I feel as if I am failing her because I am putting her through all of this for no apparent good reason. I wish I knew what she was thinking but I can hardly ask her. When any doctor or nurse asks her if she has any discomfort she says, no. But she is continually wincing with pain and she tells me her back is agony, but that could be the tumour in her bowel which she doesn’t really know about.
There are some good days and we can sit in her room and look out the window at the bowling lawn where other residents play and she can seem very happy. But her world is shrinking very fast and her interest in it at an even faster rate.
There should be someone to talk to, for the family, to know how to handle someone with Alzheimer’s, rather than just learning ‘on the job’ so to speak. No-one tells me whether this is the right or wrong way to be. Sometimes I talk to other family members of the patients on her floor but they too are as confused as I. However the one strong feeling we all have is that people with #Alzheimer’s get very frightened and I can understand why. My mother thinks everyone else is “bonkers” and she is the only sane one. There is one lady who is always trying to escape and tells me she has never been fed! The staff are all exceptionally kind and patient repeating the obvious and reassuring the residents that they are safe and well-looked after.
So all of us – patients, family and nursing staff – all just muddle along and hope that we are doing the best we can for our relative.