Caring at home is a big job but it can be done
I have to say that the stages guides out there, have been more useful to me, not by predicting what's going to happen next, but by just giving me an idea of the kinds of abilities that can be lost. Dad displayed a lot of supposedly last stage symptoms very early on in the piece, so for a while there about 5 years ago I thought he must have been on death's door!
According to the stages guides it was pretty much all over, red rover and I was just expecting him to pop off any minute. But, he's still here. Caring at home gets really hard if the person becomes aggressive or violent, or where the carer doesn't get enough time away so that repetitive requests for impossible things, or paranoia and angry behaviour, or constant day and night care needs wears the carer out. This is why respite is imperative.
Caring at home also becomes hard when the person loses their mobility. I watched a movie yesterday where a kid in it just quickly pulled an unconscious man across a car seat and I said to my partner, that is sooo not true, it is so hard to move a person who cannot help you to move them! My 6ft2in, 90kilo or so father is sooo hard to move, just lifting his leg to put it on the wheelchair foot rest is strenuous work! My family believe he must be made of gold, he is so hard to move. Both myself and my sister were talking the other day about how in the past we have found ourselves standing over Dad, in the bed (!), as it was the only way we could get him in the right position.
However, if the home carer does get access to sufficient respite (because stress really makes caring pretty much impossible), I would even suggest counselling perhaps should go with such respite, because I don't think a person who is constantly emotionally distraught can care for their loved one at home properly either...it is possible to care for a person at home, if you have the right tools.
My mother cares for my father who as I said is technically in last stages but has been so for a while, as he has no abilities at all, aspirates his food etc. She is able to do so despite his size because she has a hoist, a hospital bed, a wheelchair, ramps, a blender (for his meals), an invalids chair (can move it into different positions, but otherwise it is a comfortable lounge type chair), a toilet chair (a chair on wheels that goes over the toilet), shower fittings etc. Sounds like it could be expensive, but a lot of the equipment was donated or is on loan, some she rents but finds the rental costs cheaper than the cost of the care home Dad used to be in. She is also fortunate because Dad can still stand up, and can walk if needed, but there have been times when he couldn't and she still managed.
I guess you can see from all this, that Mum has a full time job, but she does get to go away on holidays (she brings in carers into the home) and she is involved in a community group that also requires her to travel away sometimes, so she is keeping her own life as well. She even had another community group she is involved with as well hold their meeting in her lounge room, because she couldn't get to them that day, so they came to her! Dad sat with them all, and laughed a lot at the big group of women come to visit. We also have family members that can drop in and sit with Dad whilst Mum goes out, and occasionally they cook up a couple of nights meals for Dad, so that Mum can put them in the freezer and serve them up over a few days.
The thing for us, is where we are at, the care at nursing homes is not sufficient and costs more than all the resources required to care for Dad at home. If a person can find a care home where the care is better than they can provide at home, and they can afford it then I guess it would make more sense to avail themselves of this.
Unfortunately for some of us, we have to care at home, because it can be more distressing to see your loved one cared for badly, than the effort required to care at home. I do think governments should pay home carers a much larger allowance than they do at present (I don't know if they get any allowances at all in the UK, they get a small allowance that pretty much only covers mum's expenses in nappies, in Australia...and of course means testing can result in less assistance, which I think is unfair because Mum will be needing her assets after Dad has passed on, she's only 65). Stupid thing was, was that she would have got more assistance had she divorced him. But anyways, my point is, it can be done, not easily, but it is possible.
Best wishes,
