Yes, she definitely had a period of feeling low but I don’t think that’s the case now. But, as I pointed out earlier, the not eating is a common response to those with ABI’s.
And also yes, we want her home and I imagine, remembering she can’t actually articulate this, that she would like to be home. Am I worried about how I’d cope? I suppose that’s one way to put it as she has multiple medical needs that are beyond me.
Morning Stuart - people respond in different ways. It’s thought more than half of stroke survivors experience low mood and depression. Is she (what is your wife’s name) currently on any antidepressant medication, or would she / you not want this?
You say your wife has limited communication. Is she able to write things down? Has she seen a Speech & Language Therapist?
Eligibility for full CHC funding of someone’s care is based on four factors - the nature of the person’s health and care needs, the intensity, complexity and unpredictability of her/his needs. It’s likely that she would not be eligible for full funding, but would be eligible for what is called Funded Nursing Care if she went into a nursing home as a halfway house to coming home. FNC is not paid in a residential care home or the person’s own home. FNC is currently paid at just over £200 a week in Wales.
Your wife might be eligible for assistance from your local authority with the costs of nursing / residential care home or home-based care subject to a care needs and financial assessments. To qualify in Wales, the person has to have disposable assets in their own right of less than £50k for a care home and less than £24k for care in their own home.
If you haven’t already done so, it might be a good idea to look at the options available to you more locally.
Also, if your wife is fully funding her care, based on her needs, your wife will qualify for higher rate of Attendance Allowance.
Take care.
My wife’s name is Kathryn.
I guess in trying to be brief about “our story” to date I have not included everything.
That includes that she was already on anti-anxiety, etc meds before the stroke but when she was admitted they literally cold-turkey’d her on all meds except her insulin and those they deemed relevant at the time. Since then, and at our urging, they have re-addressed that and yes, she was clearly depressed but the meds and the plan put in place by the psychiatrist are doing what they need to do.
She already has full CHC Funding. I don’t expect that to change anytime soon short of a miracle. When both hospitals talked about the future and care homes, I was very clear at the time that I could not afford their fees. The social worker advising us was also clear that “no decision is final” and we can always look at alternatives, including being at home and having the relevant adaptations. The bottom line without going into full medical history is that as much as I might want it to be different:
Should said miracle occur or at least a vast sea-change in her state then we absolutely will re-address this. Currently, she is in a specialist residential home that deals, but not exclusively, patients that are or have had a PDoC diagnosis.
I don’t know the ins and outs of CHC but to be clear I/we pay nothing. I am well aware that this could change in the future, but for now it is “as it is”. The other thing I know is that
I don’t believe Attendance Allowance will kick in yet as she has not reached state pension age. Secondly I am also of the understanding that it would not be paid as it is deemed all care is being met by the home. What we can get, I’ve been told and still waiting on the DWP for their assessment, is the mobility part of PIP.
I trust this helps answer some of your thoughts.
Hello again - Obviously, if Kathryn did come home in the near to medium term, she is going to need a lot of care support in addition to what you can do. What a local authority will usually fund in such circumstances is four 2-person calls a day, or the option of a direct payment will be offered where a budget is allocated and you are helped to employ carers. The latter is sometimes preferrable because it can offer flexibility over times. The alternative is the local authority finding a care agency - commissioned care.
CHC - for a number of years Health has been reducing its CHC funding. It is very difficult to get full funding now. It’s likely Kathryn’s health needs will be considered as ‘stable’, rather than intense, complex and unpredictable.
If there is a change to Funded Nursing Care, Kathryn will need local authority funding, and it will look at maximise whatever benefits can be claimed, including PIP.
I appreciate the future holds so much uncertainty and worry.
David.
rather than intense, complex and unpredictable
On the contrary, that is precisely what her needs are.
Thanks Bob.
Can I ask what kind of haemorrhagic stroke you had? I’d love to try and find others that have had the same as my wife, or very similar, so that I can ask what worked for them, how long, etc etc…
on that note of what worked, you mention about difficult therapy. Did you have to have any such and how do you define difficult in this instance?
Stuart
Good luck when Kathryn’s CHC Decision Support Tool meeting takes place. As I said, I’m willing to support with this if needed.
I had a near fatal brain haemorrhage and stroke in 1999. The day after it happened, my wife brought our two young children into the hospital to say goodbye to me and I was in a coma on life support for several weeks. It has left me with right side paralysis / weakness and difficulty walking. It took me a year or more to overcome the significant fatigue it caused.
I appreciate the offer David, but at this point in time there is no support required on that side.
Essentially what you describe was our experience with my wife. When the A&E folks finally spoke to me it was with the attitude of “prepare for the worst” and it was very much touch and go for 6 weeks.
Hey all … just a brief update.
As expected the CHC Funding review came and went. The reviewing nurse was kind enough to speak to us and said there are no changes to my wife’s needs therefore the funding continues.
Good to hear that the funding will continue. One less thing for you to worry about for now.