Brian must finish with the Day Centre

[Bristolbelle]

Day care in care homes...

Many "homes" offer (or will if asked) an option for day care. You will have to check them all out and see what activities etc they offer bt you might fond this a better option as it would mean an opportunity for more socil interaction than the one to one of a "sitter"

 

[Nan2seven]

Dear Bristolbelle - Thank you so much for this post. I had not given it a thought and there are a few excellent care homes in this area. I do feel at the moment that Brian would benefit a little more from some social interaction, even if it were for only one morning a week as I know it does make him tired now. But he does enjoy a chat and a change of scene.

Love, Nan XXX

 

[Winnie Kjaer]

NHS health care

Hello Nan
I just wondered how you are progressing with your application for NHS healthcare for your dear husband. Have you heard any news or has your husband still got to be assessed?

I am thrilled to have been informed today, that my husband has been granted the NHS health Care as from today. Naturally I am very sad that we have now reached this stage but happy it has been acknowledged that he needs the NHS care instead of Social Care.

I really really hope you are successful too, if I can help with anything please just ask.

Our wonderful SW who has worked tiredlessly and dedicatedly on this case as well as my late mothers is coming here Thursday morning to finalise the package required at the present time, this can obviously be increased at a later stage as and when required.

I wish you luck too.

Love x

 

[Nan2seven]

Hello, Winnie,

I am so pleased to hear that your application for Continuing Health Care for your husband has been successful. It puts everything on a totally different footing, doesn't it, although of course sad that your dear husband's health has reached this point.

In Brian's case, I didn't make the application myself: I think the wheels began to turn due to a request made by a local care home when he was in for a week's respite care. They thought he had a TIA while there and asked for a further £100 or so, a funded nursing care contribution, or something similar - and before this can be paid to them, the local NHS body had to do an assessment of Brian. I was just sent a letter saying someone would visit to do an assessment, she duly came, and on the scores she wrote down it needed to go to a panel after all the records had been obtained from everyone who has been involved with his care, oncologist, GP, stroke specialist, etc.

I envy you your "wonderful SW" - mine gave me a printout of the eleven "domains" that are covered by the scores A to C and left me to it. When she rang about something else a few days later she asked how I had got on. When I said Brian had scored A under mobility because of his falls (only three, but the last needed an ambulance trip to A & E, stitches in his eyebrow, inability to stop the bleeding, and two and a half days in hospital), she was really surprised. Matters were not helped by the fact that she had forgotten to update the latest Care Plan and it still reads "No history of falls" although when we had gone through it together I told her that this was now wrong.

The "panel", when they have gathered all the files and records, are meeting again here at our house (as opposed to the nurse on her own) on the 3rd August. I am in a bit of a fog just waiting for it all to happen ...

In a bit of a fog because on my last visit to our GP he said I should perhaps be thinking of putting Brian into residential care. It rather stunned me and I still feel ... rather stunned. I have been thinking about what he said and trying to see my days with Brian as an outsider might. He seems to have taken a severe down-turn over the last two or three weeks - since the last lot of respite, in fact. And my blood pressure is now being monitored as it is higher than it should be.

Thank you so much for your kind offer of help. I am feeling just rather bemused by the whole situation, CHC, Brian's deterioration, the Day Centre saying he must stop going (although hopefully that will sort itself out), the suggestion of permanent care by our GP. I have no idea what I should be "bringing to the table" on 3rd August. Should I be making any contribution at all?

Love, Nan XXX

 

[sunray]

Here the word "fall" seems to trigger some kind of "wouldn't he be safer in care" reaction among the medical profession. I know the answer is "no" as I watch Ray like a hawk and he still falls. He has had so many falls, two weeks ago he had had five in a fortnight but since then only one when he didn't hit the ground as I grabbed him as he slipped.

Ray's falls are caused by left side neglect, left side weakness and a dwindling appetite which means he is losing weight again. As he has osteoporosis the body scan showed many areas of damage caused by his many falls although the report called them "incomplete fractures" whatever that means.

I want some more physiotherapy for him as I think that may correct some of his present balance and walking problems. But maybe I am just clutching at straws as usual?

Hope things get better for Brian and for you.

Sue.

 

[Nan2seven]

Hello, Sunray,

Brian has no weakness due to strokes or TIA's and the falls he has had have all happened when I have not been with him - two in local care homes and one when he wandered out of the supermarket we were in and began to walk home without me.

Your Ray does seem to have an incredible number of falls and it is no wonder you watch him like a hawk. Brian has been given exercises to do to improve his balance, but sadly they seem to make very little difference. But that's not to say they won't help Ray.

Love, Nan XXX

 

[Winnie Kjaer]

Hello Nan,
Thank you for your PM sorry I have only just seen it.
You asked me should you prepare something for the panel and my answer would be yes. That said I will explain exactly what happened here.

As I probably told you earlier I needed an assessment due to changes with my husband's financial situation and I thought as we are doing a financial assessment I might as well ask for a NHS assessment too, which I did.

I downloaded the forms plus the assessment tool on the internet and filled it in being as precise and exact as I could be with a lot of facts from my diary.

I called the SW and she interviewed me and made her own notes plus took the paperwork I had done with her.

She then organised every single person my husband had been in contact with to do an updated assessment on him.

Later the SW and the head nurse came back and assessed my husband together themselves and interviewed me again.

The SW then put her application and support tool in place having used all of mine more or less by the word. She added her own rapport and then send it to panel.

Now I was never told when panel was much to my surprise, *even though I was not told with my mother either, but her case was fast tracked and almost guaranteed before commencing).
The panel was this Tuesday just gone and my SW had apparently received a call from one of the panel members asking her if she was willing to come down and present the highly intense case for the panel. This is what they called it. The individual panel members have a chance to study the case before the meet and decide apparently.

The SW who as I mentioned it unique, totally dedicated and so switched on I cannot believe my luck, was pretty confident it would be accepted, but she apparently did a strong presentation, and it was agreed unanimously that my husband would never receive care like he has here in any other setting. If he did not it would be extremely detrimental to him and he would deteriorate extremely fast. She said it was one of the biggest compliments I could ever receive, and I am thrilled.

She told me that even though this of course has to do with finances as well as care, she never mentions finances in her presentations as to her it is the care that is 100% the issue and nothing else.

She has been today to go through the final paperwork, and to explain the above to me. The NHS will now take over and will be writing to me with copies of everything that has been written throughout and the last thing to do is to do a new care package which will include everything we need. Including sitting service and respite. I don't have respite and do not intend to unless I for health reasons need it. Hopefully therefore they will be more generous with the sitting service.

I have made it completely clear that I intend to keep my husband at home till the very end and that has been totally accepted by all parties.

The NHS funding gets reviewed after 3 months and then annually, but obviously in our case there will never be any improvements so therefore no changes for the NHS funding unless it is in our favour.

As for preparing something Nan, If you have not already prepared the application form and the support tool yourself, I would sincerely do so if at all possible. Be specific and even include all the smallest details. The new support tool does not allow you to double score on Severe, you can only have one severe after that it has to be either High, moderate or low.
You never know you may be asked to present the case yourself as it is being held in your house.
I have never heard this being done before and shall be very interested to hear how it goes. Will your husband be present? I hope not, our SW will not even discuss the case within earshot of my husband which I totally agree with.

I will add below the scoring I did and the panels scoring next to it, so you can see both, but of course each case is unique and only YOU know how things really are.

Behaviour: Me Moderate, Panel Moderate
Cognition: Me Severe, panel Severe
Psychological Needs: Me High, panel Moderate
Communication: Me High, panel Moderate
Mobility: Me Severe, panel High, but only because it cannot be double scored
Nutrition: Me High, panel High
Continence: Me High , panel Moderate
Skin: Me No needs, panel Moderate, (My score was with good management)
Breathing: Me Low, panel Low
Medication: Me Severe, panel Moderate
ASC: Me Moderate, panel Moderate

Additional comments : Me: My husband cannot ever be left alone as he is totally dependant for everything and would just be stranded without being able to do anything about it.
Panel: Agreed

Additional info: Me: Everything about his care plan, sitting services and outside support from support meetings which is essential for my well being.
Panel: Agreed

The panel consisted of Chair: Cluster Manager
Health: Professional Leas, NHS cont. Healthcare
Health: Professional Lead NHS cont. Healthcare
Health: Community Nurse Team Matron
A&CS: Practice Manager, different area to ours.

I don't know whether any of all this helps you at all, but if it does I shall be extremely pleased.

I do wish you luck with the application and hope the outcome is as good as ours.


Love and hugs x

 

[Nan2seven]

Dear Winnie,

Thank you so much for all of this information. I had completed the eleven domains support tool before the CHC nurse came ten days or so ago but from what you are saying they go through it all again in perhaps more detail. So I will print another copy from the website and prepare even more detailed answers to each heading. I wonder why they allow only one "severe"? With Brian, it will doubtless be cognition.

(He greeted me yesterday morning with the words "Hello, Mummy" and it continued until he went to the Day Centre. On the way home in the DC 'bus, there had been a hold-up due to an accident and he thought that either his mother (me) or his father had been injured in it. When I opened the door to him and the driver he burst into tears of relief and then kept asking if his dad was all right, had I heard from him, how did I know he had not been injured in the accident? Should I not be ringing the hospital? I reassured him and said we (his mum and dad) were both fine and not to worry any more about it. His mum died 12 years ago and his dad 34 years ago. Tears are welling even as I type this. Just another day of living with dementia.)

Thank you again for your very helpful post.

Love, Nan XXX

 

[Grannie G]

Dear Nan

It sounds as if we are in a similar place and it really is very difficult.
Dhiren greets me so well when I visit him but most of the time he is worried he hasn`t heard from his mother.
At least in the home I know little will happen to throw him off kilter. He sits in the same place all day and even has his meals in his chair as he can no longer sit at the table.
Even so, it`s stressful having these converstaions for a few hours, never mind all day.
I do wish we could all get together.
Love xx

 

[Nan2seven]

Hello, Sylvia, so good to hear from you. Having a bad day. Brian had another TIA yesterday afternoon (after the Day Centre and visit from the District Nurse) - and has had another this lunchtime, after threatening to walk out of the house because it wasn't ours and we should be packing everything and leaving ...

Had to simply walk away in the end and did so, but first having to lock the front, back and conservatory doors. Sat in the shade on the patio. I made lunch presently and when he got up from the table he was leaning so much to his right he could barely walk. Just said he was tired. He slept in until 10.30, so it's the TIA that knocks him out. Am feeling utterly depressed.

Was going to start a new thread, but having found your post here ... have just off-loaded, as you see.

Love, Nan XXX

 

[imac.girll1]

Nan sorry i havent had much chance to answer your post or anyone elses as am out of the country but just wanted to say i am thinking of you both.

Have you heard anything else from the day care centre and are they still ending his place there?

Keep well, and speak soon.

xxx

 

[Helen33]

Dear Nan,

Although I have nothing to offer in terms of useful information, I do want to say that I do know how hard it is sometimes to keep going when faced with 'issues' every day.

Sending love and a (HUG) this morning and hope that today is a little better than yesterday and that those tia's stop occurring.

 

[Nan2seven]

Hello, imac, and thank you for your message. Brian's present Day Centre have said they will continue to have him attend for six weeks and the SW is hoping that by the end of that period a couple of days will come up at the Dementia Centre, which is the only alternative, it seems. She says she is putting all the paperwork in hand. Since there is apparently a waiting list for every day of the week I am not sure how this is going to pan out. Just have to wait and see - but the SW has said I will not lose out over "time off" through the week, which is reassuring.

Hello, Helen, and thank you for your message too. Brian was upright again this morning i.e. not leaning to one side, but his ability to walk has all but left him. He hangs on to everything as though his life depended on it. Also his speech is still a bit slurred. He is not the man he was a week ago. No TIA to-day. But he is so bowed and bent, head down and staring into his lap. All rather heartbreaking.

Love, Nan XXX

 

[Winnie Kjaer]

Nan
Does Brian walk with a frame.
My late mother was just like Brian sounds to me. She refused a frame initially, but soon depended on it until she could not walk at all. I had to hold on to it and move it with her but it was safer and better for my back.

You may of course already be using one.

 

[Nan2seven]

Hello, Winnie - Yes, Brian has now moved on to a Zimmer frame. He used a walking stick for a couple of years (and occasionally two), but for the last few days has been glad of the frame. But it's awkward to use on our narrow landing upstairs and I still lead him to the bathroom at night.

Love, Nan XXX

 

[Grannie G]

Hello Nan

I had grab rails fitted in our narrow hall. They were much easier for Dhiren to use than a zimmer. The OT arranged for them to be fitted.