WHO REALLY CARES?

Diane’s social worker visited yesterday and we had a pre-meeting in advance of a full Continuing Health Care (CHC) meeting next week. The time for this funding seems to be up, as it looks like she will no longer tick the necessary boxes.
Diane and I sat down afterward and made our own assessment against the 49 pages of information and qualifying criteria. Anyone who has been through this process will appreciate how complex it can be. Even from a pessimistic standpoint there was no doubting her condition had improved in many areas. A good thing.
The assumption could be though that Diane is now sufficiently well (based on the CHC criteria) that her best interests and future healthcare can be fully achieved without further financial assistance. And this coincides with Government announcements about reviewing and tightening the benefits system. It’s not looking good.
CHC funding has been a lifeline for Diane, literally. It ensured payments for 3 years in the nursing home and, latterly, a care package since she’s been back at home.
On the up-side, the potential loss of CHC funding clearly indicates the significant improvement that Diane has made. On the down-side, we’re nowhere near out of the woods yet (despite Diane’s protestations to the contrary).
And this isn’t just the withdrawal of funding. We may also loose the medical bed, bath hoist and other provided equipment that remains essential for Diane’s day to day living. Things I will need to rent or buy as they remain essential.
Naturally, no one has yet asked me what I feel about the situation, or what impacts this will have on my wellbeing or future life. I don’t expect they will. And even if they do, what difference is that going to make? The whole thing is patient centred and entirely ignores those others involved. So suck that up Butler!
One key issue for Diane from the outset has been the wish to maintain some semblance of dignity and not have me intimately involved in personal care. The care package sort of helps but, as I indicate in the book, this aspiration failed very quickly. Toileting is not a precise science and I am on duty on the ‘poop deck’ many times a day.
After 5 months we found we didn’t need the lunchtime and teatime carer visits. However, the morning visit for washing, dressing and getting Diane ready for the day has been very welcome. Especially as her night-time continence remains inconsistent. This too will now be down to me, unless we privately fund carers. But, I hear you say, there is Carers Allowance for that. Well, no. Because I am at that advanced age where the state pension has kicked in, I would not be eligible as my pension is greater than the Carer’s Allowance thresholds. There is the potential to apply for something called an ‘underlying entitlement’ which may support the need to top up other benefits. I do not and never had claimed any benefits. This situation might also be assisted by Pension Credit. However, this is means tested. We’ve been diligent savers, planning well ahead for our latter years. And because we currently still have a few quid in the bank (not that much, but it’s a low threshold anyway) we wouldn’t qualify for that either.
Diane’s stroke has had a direct impact upon me too. Apart from the obvious mental, social and physical challenges I’ve endured so far, I have had to close my business and end nearly 50 years of professional life. Something I wasn’t intending to do for a few years yet. This means our principal source of income has also stopped. Funding Diane’s future healthcare will now directly deplete our carefully hoarded savings. Savings that we hoped would provide a modest standard of living in retirement.
I have been actively involved in charitable work for the RNLI for 24 years, as Station Chairman, Launching Authority and as an active 24/7-365 crewman. Now that I have to be with Diane 24/7-365, I can no longer attend ‘shouts’ or fulfil other duties, so I have had to stand down from everything. It’s been a huge wrench.
For the same reason, hobbies and interests have ceased completely. I have no time. I grab the odd hour when the physio makes a home call, or Diane has a friend around. But even that time is used to fulfil other necessities.
In an attempt to keep my blood pressure down and address the mental pressures of dealing with Diane’s medical situation, whilst also getting a bit of exercise, I would often go for an early morning walk. Self-imposed mindfulness treatment. I’ve done none of that since Diane came home.
I haven’t had more than a half day off in the last 8 months and nothing in the way of a holiday or personal break for nearly 4 years. As a full-time, unpaid and soon to be unsupported carer, where is the safety net for me? There isn’t one.

This sounds like an unjustifiable moan. I should be thankful that Diane is still alive. But whilst the medical, social and financial processes are naturally patient centred, they seem to completely ignore ‘those who only stand and wait’; and do the personal care, washing, ironing, cleaning and hygiene, shopping, cooking, dispensing medicine, management and personal transport for doctor’s appointments, clinics, physiotherapy sessions and the plethora of day to day’ stuff’ that no one else is there to help with, whilst completely sacrificing their employment, household income, social activities, personal interests and any prospect of having a future life outside of full-time caring.

The sheer weight of mental pressure, angst, worry, frustration and physical exhaustion placed on the home carer is not addressed, nor provided for, at all. Perhaps it will when my system finally fails. Good job I’m still reasonably fit and healthy then.

Such is life.