New to caring Alzeimers and Motor Nueron

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Hi, Just found this forum and glad I did. My husband was recently diagnosed at 42 with motor nueron disease aka ALS. He current works full time most of it from home and has foot drop in both feet so walks very slow with crutches. We are coping and learning something new everyday, its a bit of a minefield as there are so many things to find aid for etc. To add to this my Dad is 84 and has alzeimers and so I am helping my mum also 84 care for him as it's too much for her. I'm self employed and wonder how other full time carers cope financially.
Mariella, hi again - I was wondering whether the mods would unite this post with your others, but they don't seem to have. Definitely 'newbies' gets the biggest traffic, but it can be a bit confiusing, first off, where best to post. By and large most of us just stick to Newbies and All About caring - maybe we are just lazy!

It's definitely 'too much' to cope with a husband with a life-limiting desperately grim disease, and two ailing parents and with Alzheimers in the frame.

You say you are self-employed, but maybe now is the time to sit down with your husband and really talk through finances, and then make plans. It's a dreadful subject, and one I had to go through with my own husband when he was diagnosed with terminal cancer. It was unbearable, but it had to be done. How were we going to cope now, could he still work at all (I'd been made redundant from my part time job the previous year, but had a little self-employed income I was trying to step up, and our son was still at school, etc etc), what was happening about pensions, life insurance (most horrible aspect of all), what about the mortgage, living expenses, medical expenses etc etc. All just ghastly - but we had to do it.

I would say, though, that whatever the situation financially at least with your husband and yourself, when it comes to your parents (and his) NEITHER of you should have ANY financial responsibility or involvement with them! Remember, when it comes to the council providing any care at all, they assess ruthlessly, and it is THEIR finances that are assessed. There is NO point you providing 'free' care for your parents if they are eligible for council care - YOUR time is much better spent either on your husband, or on your own employment. Don't save the council money!

For eligibility, there is a lot of info on this site, and elsewhere, but basically to get care workers coming in an individual (note, individual, not couple) has to have over £23,500 in savings - the value of your parents house or flat is not taken into consideration unless they go into a care home to live (which might yet happen....dementia is almost impossible to look after 'at home' when it gets really bad).

Also, did you know that if one of your parents has dementia, that person is exempt from council tax on their property? So, for a couple, it should be just about halved. Not many people know that!

Increasingly, you will have to think of yourself not as providing CARE for your parents, but as being their 'Care Manager' organising and sorting out things for them - and probably too, grimly, eventually for your husband......

And, as well, keeping your OWN employment going.......

Wasy it certainly won't be....

I wish you all the best possible, in a very, very difficult situation - Jenny
Hi Marella,
welcome to the forum.
I'm sorry to hear about your husband's recent diagnosis, what a terrible shock for you both.

Supporting more than one caree is very hard going.

Re surviving financially, I suggest the Upfront guide is a good place to start to see what you are entitled to https://www.carersuk.org/upfront/ if you follow the link there is also info re his to contact the helpline, which is great at benefit checks and for advice.

Melly1

(Jenny, we did not combine the threads as this one is a general introductory post and the other thread was requesting advice about a specific issue. Both threads were in the right place.)
No probs - I just didn't want to repeat myself (which I tend to do anyway, rather a lot!)