Finally we have help...

[TK-67]

Since my last post a lot has happened.

The care in the new home is so much better and mum is much calmer. Unfortunately since her admission 2 weeks ago her MSA symptoms have come thick and fast - some incontinence, balance problems, UTI infections, and her BP is now all over the place, with 2 instances of it going extremely high. She's also now falling, hurting herself (despite the best efforts of the home) and becoming lethargic for a proportion of every day. We have the support of the local hospice too but the rollercoaster of this horrible disease continues at pace - every day is different and we never know what to expect.

As a family we feel relieved to have found somewhere that can help and to have specialists who can advise but to have to fund this level of care is difficult, we're living in hope that we may get CHC funding due to the complexity of her condition but I know it's going to be a fight, not fair when we have no option and we've already experienced what an inexperienced home cope! So angry about this.

[Keycode]

I am pleased to hear that the new home is better. My mum receives CHC she lives at home with my dad but they have carers who come in 3 times a day. When she first received it, it covered the whole cost of care but unfortunately the carers we had were not meeting mum's needs, the care agency seemed to have such a high turn around of staff and things soon started to deteriote. After a lengthy and stressful process we finally found a care agency who came highly recommended and are fantastic but unfortunately the new care agency charge a lot more than the old carers. Because of this CHC will not fund the total cost of care and we have to top it up ourselves. From what I can understand of CHC they will cover the full cost of care providing it is within their budget. I'm not sure how it works for care homes but from what I can gather they have care agencies which they use and as long as you are using one of them then it is covered. But for us it was more important that we had carers that were experienced to be able to care for my mum who's needs are quite complex. It is a very stressful situation to be in and I personally found the whole process really upsetting. So important to find the best care for our loved ones.

[TK-67 in reply to Keycode]

thank you - mum's already in a nursing home...it's interesting though that you could top up, we can afford to do that. My main concern is keeping her where she is so this may be an option.

[Hidden]

Really glad you are getting somewhere now. Although at such a cost of effort and worry. Care issues often seem to cause more stress than the condition itself. I'm sure it oughtn't to be like that! Hang in there

Kx

[TK-67 in reply to Hidden]

thank you - it really shouldn't be this hard!