Mind the (funding) gap

This post and Watch the anti-psychotics are both about our views on the care of dementia patients based on recent experiences with our parents. As such they are less light hearted than usual but we’ve written them because they may help if you are facing similar situations.

We mentioned we had to move dad to a new home. In the long run we think this is a positive move as the new home is much more focused on mental stimulation not just physical care, although that seems good as well. Dad says the food is really good and as food is one of his remaining pleasures, it’s very important to him.

In the process of finding a new place for dad, my sister talked to lots of homes and we went to visit a number of them. It was a terrible day. The physical environments ranged from luxurious to dire but the atmosphere and the attitude of the staff varied from a focus on being busy giving only physical care to plainly disinterested.

In one home (which was the most expensive), in the 30 minutes we spent looking round we met numerous carers and not one of them talked to or engaged with the residents.  The head nurse was lovely but their whole focus was on the physical tasks and there was zero engagement. Almost like animals in a zoo – looked after and fed but no one talks to them.

The place we finally settled on was the exception and immediately stood out from the others. What made it stand out was not so much the physical environment but the level of engagement. In the 30 minutes we were there we saw carers sitting with residents, playing cards, doing one-on-one activities, even sitting in the room of one person who was bed ridden and talking to her for the whole time we were there.

I guess there is an argument that if the person has advanced stage dementia they won’t know but the emotional brain still seems to work and loving care and attention is what will register with that part of the brain even if the person can’t articulate it.

We moved dad to this home also because it has nursing care, recognising he may well need that in the not too distant future. We certainly don’t want to move him again.

Within the move process we hit questions about the amount of money we had to resource self-funding. We did look at some homes that also had units funded by the local county council but they were so terrible we just couldn’t bring ourselves to put him there even if he would have been in the self-funding unit until his money runs out.

To get dad into the new home we had to prove he had sufficient funds to self-fund the care home fees for two years plus £23,250.mind-the-funding-gap-dementia

£23,250 is the maximum figure the government insists is in the person’s bank account at the point you can request financial support. We were told that once Dad’s savings reduce to that amount we can then apply to Adult Services who will agree a set amount to be paid towards his care home fees. Any additional funds (top-up) required to fully meet the care home fees, have to come from family. We are told that we cannot pay this top-up from the £23,250 that will be sitting in Dad’s account.

Like us you are probably trying to fund your own pension, help your children onto the property ladder, live your life and find time to manage your parent’s lives! Quite why the £23,250 can’t be used for top-up is a bit of a mystery that we have yet to solve. After all, it is quite a lot of money and would make a difference in the potential length of stay in a decent home.

The other thing to watch out for is that the home is likely to ask you to prove you have the funds for at least a two year stay by providing bank statements.

We found this all very emotionally taxing. What do you do? Go to a cheaper home that has poorer care or a more expensive home which seems to have very good care. (There was also the option of a home with poor care that was also very expensive! Quite how they get away with it, we don’t know!)

In the end we went for the expensive one with good care and frankly we will worry about what happens two years down the line, if and when it happens.

My sister now has a complex spreadsheet listing all dad’s assets and income, like his state pension and personal pension, on the plus side and the weekly cost of the home on the minus side.

There’s a grid that shows the number of weeks and the milestone birthdays indicating how much money dad has and the point at which it will reduce down to £23,250. This is effectively calculating when he needs to die or be so badly affected with Dementia that he really won’t know that he will have to be moved into a lesser Care Home because his family won’t be able to afford to pay the difference between what the Council will pay for his care and the cost of his current Care Home (the top-up).

I can only say it is all horrendous. Government policy must change. Why is there so much focus on life at any cost when there seems little or no regard to quality of life, let alone the quality of mental and emotional, not just physical care?