It doesn't help that she no longer wears her upper dentures because she can't get to the dentist to have a new mold taken. Yes, the dentist does come to visit, if requested, but, that's another NHS service in which they expect to just be able to turn up, gain access and disappear after saying that they can't do anything apart from clean & scale because she can't get to the office. So, she can't chew as she used to. She also can't hold a fork or a spoon as she used to - forget knives - her right hand has curled in on itself & is, basically, useless now.
Yeah, that was another run in. Trouble is people assume that others know nothing about WAN networks, that no one in the NHS or the local Council is really unconnected these days, so getting a spiel about can't work on one town's client list whilst in another town is a load of tosh.
It used to worry me when Mum refused to eat or drink, she still doesn't drink nearly enough. Apparently that is quite common in the elderly, which in turn leads to increase frequency of cystitis and UTIs. So, I tell Mum to drink more, the doctor tells Mum to drink more but she won't because she doesn't like wearing an incontinence pad and she doesn't like having to ask someone to change her pad, so she just doesn't drink what she should. *sigh*
What's a bod to do? She's an adult, you can't force them to do anything they don't want to do when they know perfectly well why they aren't doing what they are supposed to do.She's not starving. It used to frustrate me, now I no longer have the energy to be frustrated, I just shrug my shoulders & come back downstairs & bin the food.
Incontinence pads - once assessed by the NHS as requiring these you are rationed. Yup, rationed. Maximum ration is 4 day pads and 1 night pad. Boy did I have a fight on my hands with the district nurses about that one! Pads do not prevent infections, if anything they increase the chances of having one. I had a near on screaming match with one DN about that. In the end the arrogant woman threw her hands up & stormed out, I was left with the contact information of the nurse attached to the firm which has the current NHS supply contract. She was the one who explained about the rationing. She was the one who explained about "activating the core" of the pad to ensure maximum absorbency. So, to help prevent recurrent infections, we supplement the NHS supply with Boots own - about £10/£15 a week.
Apparently, though, Mum is lucky in that a) she lives in Scotland where the ration is more generous and b) she doesn't live in a care home/nursing home in England where they are rationed 3 pads a DAY! What a way to treat our older people.
Mum also has days when she just sleeps. If that goes on for more than 24 hours I have to start forcing her awake to get medication down her. If she's got an infection then the sleep isn't restful and she has screaming nightmares - not much fun for her, or us.
I think the hardest part about caring is the lack of information. That's not to say there isn't any information at all but it's a minefield - navigating the GP system, navigating the hospital NHS system, the Social Work system, the care company system, the dental system, the benefits system, the actual information regarding the medical issues each person has - that just serves to highlight the fact that doctors know very little and can only give generalities, but generalities are so broad they don't fit (by definition).
So, while you're trying to keep someone who is semi-hysterical because they can't remember or they can't do what they want or they have to rely on someone else to do everything for them or they have to deal with a progression of strangers staring at them while in a state of undress - you also have to find your way, fight battles you really didn't think you'd have to fight, spend hours on the phone chasing your tail when all you really want to do, because of your own pain, is sit down with a cup of tea and pretend to be on a beach.
I was referred to the Princess Royal Carers Trust. Apparently they support carers. Ah ha. I have no doubt they support some people but I was met by on the one hand a very pleasant easy going person and, on the other, someone who was dictatorial, demanding and outright unpleasant. So much for support.
Social Work say they don't want a carer breakdown situation. I can understand that -I was asked what my main stressors were - lack of time to myself, lack of respite and lack of funds.
Go out for a walk - was the unhelpful reply. I can't walk very far. It ends in pain. Drive somewhere - how do I put fuel in the tank of my car trying to live on £104 a week, when it takes £10 roughly for a return trip anywhere (like the seaside, Edinburgh or up one of the vallies). If I have a break away from my caring duties which leaves less than 35 hours in any week when I care, I have to declare it and I lose money. I can't afford to take a break, lose money, pay for the break and keep living. I mean I live in my overdraft - much to dad's disgust (but then he's always been one for not using an overdraft, yes, it's bloody expensive but if you have a low fixed income how are you supposed to clear it?). I lose £30 a month before even sneezing to overdraft charges, I'm just lucky my bank hasn't demanded that I clear the overdraft.
That said, I have been extremely lucky about a month ago. Dad paid for me to have a short break in a caravan in Glen Nevis with my best pal who managed to find time to get away from his life in the States. Dad also, basically, bankrolled the fuel costs - everything else we had to find a way to pay for. The highpoint, the luxury point of the whole 2 weeks - a 90 minute cruise on Loch Lihnne. Imagine that, a loch cruise is the highlight of your whole holiday.
On the day we returned from Glen Nevis it was straight back into the stress more or less as soon as I walked in the door. Such rapid stress gain, after an almost blissful 4 days, was hellish & did a fair bit of damage. Straight back into caring.
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