Build up when not spending

Spoonie_Turtle

Muttleythefrog said:

Perhaps try to think between yourselves what could improve their life quality or provide family oriented breaks in consideration of accrued benefit monies that may be good to spend. The consideration is far from unique as often disabled/sick benefit claimants are in receipt of decent benefit income but struggle to spend it due to having restricted lives.

Just going to highlight this.

Depending on level of severity and equipment he already has, there may be all sorts of things and experiences that could help with quality of life - anything that enables him to save some energy will be helpful, and being able to have a break somewhere that meets your needs as a family (if that's possible) can do wonders.

I have ME and live with my family but my own experiences may or may not be particularly relevant, depending on how his illness affects him.  I'm mostly housebound normally (although my PIP backpay paid for an offroad powered wheelchair for when I am occasionally well enough to go out) but the past several weeks mostly bedbound and I while I'm hoping this is just an extended crash, it's given me an insight into what kinds of things would be helpful and if this carries on I will be considering buying some of them. 

Examples of good budget-priced investments for me are grabbers, and 3M ear defenders; my best expensive investment have been top-of-the-range noise cancelling headphones which have honestly been life-changing.  There have been things I've been able to do and memories made that were only possible because of them reducing the sensory input far better than the ear defenders could ever have done.  And then quite a lot of useful aids around the £30-60 mark too.  Smart switches to turn on my bedroom light from my phone, a sturdy bed table, rolling stool because I don't live in a wheelchair accessible house, decent visco-elastic memory foam cushion, V cushion for sitting up in bed, nice bedding, dimmable touch lamps to regulate visual input, etc. etc.

I'm not a materialistic person and I dislike having to have lots of *stuff* but that's drastically outweighed by the improvement in quality of life from having them.  Aids can be the difference between someone being able to do a thing of not being able to, but they can also be preventative against further deterioration, and they can enable energy saving in some tasks which results in better function for other tasks.  We don't ever need to be ill 'enough' to use aids or equipment, if they make life easier then we should use them!