My mum is 85, soon 86.
I care for her when I visit weekly, but mainly my dad. He is 81 and also undergoing soon radiotherapy for an inoperable tumour.
My mum is so ill, but nobody is helping manage her illness, in terms of how she feels, her body. Mobility issues worsening, but my dad wants her at home. Discharge Carers sent away as the times they turn up are so sporadic, far too early in the morning when she is feeling unwell, or too early to send her to bed! Completely pointless and unmanageable, caused more stress in the end. She sleeps mostly I day! Ontop of that both suffered a stroke. My dad recovered but tired.
What to do?
I want her in a respite setting.
How to get her in or get a Marie Currie nurse to help out. She falls in between the gap. No respite on offer by McMillan hospice, only if you are 3 days to 2 weeks from death! As they keep saying. No physical visits by cancer specialists Mcmillan nurses, only once si ce March pandemic began, as policy is over phone advice. My mum is not earing, she is so thin. The physical demise is not taken at all into account. Her GP rarely comes out. We cannot often get through on the phone. I wait often nearly 20 minutes, do you honestly think, eldey patients can manage that?
The system is totally not up to scratch. Sporadic and slow. The impact of hospice policy not to give respite is definitely affecting us.
Her cancer symptoms are severe, not the pain as much but all over body itching, as was one of side effects and thus drugs to manage this have been removed since on palliative care plan. In and out of hospital meant constant changes to drugs. Drugs that before hospital admissions had a purpose, but suddenly stopped. Nobkdy actually looks at this in detail.
My parents paid into the NHS all their life, why should they use their savings for more care,when it is there to be used for paying bills, repairs to property etc.
No idea if she even qualifies for any free 24 hr respite care, probably not as they owner a household! STill waiting from doctor for referral for care assessment. I am going to speak to Marie Currie as a last resort. Nobody wants to go through their private finances with strangers, bad enough when discharge carers keep telling my dad about paying for care, have you got more than £23k? You would not tell that to strangers in a street!
I have to say, the amount of time spent on telephone, going over the same issues is staggering! Referrals so slow, some not to date even done like incontinence issues, pads she needs. Huge cost on that for both. My biggest anger is that there is no access to specialist palliative doctors. It is not good enough.
Anyone else experiencing, falling in the gap, where only options are yoy yoing between hospital and home?
The virus impact, has been a disaster for cancer patients.
Hi @4mum,
Sorry to hear about your mum and wish there was a magic wand I could wave. I wonder if it might help you to ring the helpline to see if they could suggest an alternative to you.
Definitely relate to the not wanting to be in and out of hospital - I always know when my wife is really ill when she actually wants to go to the hospital but it is usually not long before she wants to get out again.
Some years ago we had a local community hospital that offered respite care, but then it was closed and sold off. I wonder if the local hospice might know of other options too that you might discuss.
Covid has not made anything easier either.
Hope some of those ideas help, keep posting when you need and I hope you all find the help you need.
<<hugs>>
Steve
