Update on Alan's progress

[IvyRose64]

Good morning or whatever time of day it you are reading this. I just thought I'd give you a quick update on Alan's currant status. He is still in rehab, I haven't seen him now for 10 weeks. He was originally given a discharge date of 13th but this was extended last week to 30th. They team at the rehab centre have said they have done all they can for him and his progress has not been what we had hoped for. He is pretty much bed confined now although he has been getting out for a few hours day but he finds it very tiring. He is unable to transfer and needs a hoist for this. The OT phoned me last week to say they are applying for a 'Continuing Care Package' as Alan will need quite extensive support at home. I've spent the weekend rearranging our apartment as the only place for the hospital bed to go is the living room, this is an open plan room (Kitchen/dining/living). She said that the carpet in the bedroom would make manoeuvring the hoist difficult it would be easier on the hardwood floor in the living space. So I've rearranged our bedroom to fit some of the living room furniture in as I don't want to get rid of anything. It's a bit tight but at the end of the day I only sleep in the room anyway. So now we just wait to see if they'll agree to assess for the Continuing Care Package, wait for the assessment and then the result. Sometimes it feels like he's never coming home but 30th is only 2 weeks away.

Stay safe people and thanks for the support.

[ChocolatePot]

fingers crossed he is soon home! <<<hugs>>> to you in the meantime

[IvyRose64 in reply to ChocolatePot]

thank you.

[Paul_and_Sue_Wood]

Alans better half

My Sue is also not able to support any movement and we also have a hoist along with a lift to get her in and out of the car.

You will that an Occupational therapist will visit to assess your property for suitability and suggest and organize adaptions required.

The hoist is difficult to manoeuvre on carpet floors.

If you get Continual Health Care package that means Alans care costs with carers is fully covered by the state.

Keep your strength you're on a difficult twisty road.

Paul

[IvyRose64 in reply to Paul_and_Sue_Wood]

Thank you, we've had an assessment and due to carpet in the bedroom the hospital bed and hoist are going in the living room. Just heard he did not meet the criteria for CHC so a Social services assessment has been requested.

[TK-67]

You should be invited to the CHC assessment - you need to make sure that the package supports you as well once you're caring for Alan at home, you should contribute and sign off the initial assessment documentation which may be done by the rehab centre/OT. It can be quite a process and is in the control of your local council. It will cover not just the equipment but any care support you both need. Paul is right, this isn't an easy process and you need to make sure you're fully involved, the lockdown makes this even more difficult. If you need advice do come back here - ask any questions you may have.

We were due to be assessed the day before mum's home went into lockdown but as external visitors couldn't come in it was postponed, 3 months on they are still trying to work out how to do the assessment!

[IvyRose64 in reply to TK-67]

Thank you, for this information, just replied to Paul, Al doesn't meet the criteria of CHC so guess it means we're going to have to pay for his care ourselves, Not quite sure why he does't qualify as when I filled out an checklist myself he met 7 of the 10 critter listed, the OT made the application.

Just got to see what happens next.

[TK-67 in reply to IvyRose64]

You can appeal this. I'd be concerned that the OT completed this - it is worth picking up with your GP/Consultant and maybe even your local hospice to get some help as soon as possible. There are other benefits available so getting some advice here may be a good idea, the hospice can be a great support in sorting so much out. Can I ask - did the OT run the documentation past you before it was submitted?

[IvyRose64 in reply to TK-67]

Hi, no the OT didn't run this past me she just told me she was making the application. I didn't know I could appeal. It's all very confusing and somewhat stressful I will talk it over with Al and perhaps contact his consultant. Thank you.

[TK-67 in reply to IvyRose64]

I'm afraid it's a far from easy process. I would contact your GP too to discuss, even if you do end up having to self-fund (and this may be the only option in the short term) they will be able to help with equipment etc... GP might be quicker than consultant.

I am so sorry that you're having to go through this, it isn't fair when you're already dealing with so much. Please reach out to get some help in co-ordinating what you're going to need. The rehab centre won't and shouldn't discharge him until the right care is in place.

There are also organisations that can give you support as a carer and the GP should be able to help with this too. You may find the rehab centre have already contacted them about discharge.

I always find shouting to get the help you need (and deserve) is a good way of venting the frustrations at how unfair things are!

[IvyRose64 in reply to TK-67]

Thank you.

[Paul_and_Sue_Wood in reply to TK-67]

Hi

My Sue is 50% CHC and 50% social care.

The criteria for initial assessment is usually by social services ( council) who then pass for CHC if you meet their criteria for CHC. You then go through another assessment which in Sues case we had a CHC nurse, OT, carers, hospice nurses and our input.

If the care is medical that is CHC if its social then its council which is mean tested based on the one who needs care and there income and assetts.

Social care is getting up, dressing, washing, drinking, feeding.

Go back to the OT to get to social care at the council.

Paul

[IvyRose64 in reply to Paul_and_Sue_Wood]

Hi Paul, thank you. I've literally just had a call from Social Services. Alan doesn't have any medical needs. She was a very lovely lady and we've worked out what I think we will need support with, she offered me some advice too which was most welcome. I hadn't realise the the mans test would be done on just Alan I thought they'd look at my savings and income too so not quite so stressed about that now. The carers will come in four times a day for between 30-45 minutes depending on time of day. Alan is able to feed himself and has no problems drinking so it's literally getting up and dressed, washing and personal care.

Thank you for the information, it's so nice having someone who understands what I'm going through. I have my family who are all very supportive and lovely but they don't really know what I'm dealing with.

[Paul_and_Sue_Wood in reply to IvyRose64]

Hi, try to get the care plan paid to you direct so you can control payments to the supplier.

I've found this useful so i can control who provides care as council paid carers are lax. you can then build a relationship with a good care company and the staff and pay them prompt... win win.

But keep all reviepts and payments as you do get checked.

Aland plan will take into account his income plus asetts Inc his share of the house if you have one.

Paul

[ChocolatePot in reply to Paul_and_Sue_Wood]

oh the means test is only against one person? Did not know that. Told the lady from social care on the phone we have more than the minium in savings! New plan of action in this case!

[Paul_and_Sue_Wood in reply to ChocolatePot]

If you have savings inc property its usually split.

[Hidden]

I'm glad he has had a chance at rehab. This way you know they have given him every chance to maximise his ability.

(In our experience, community physios sometimes give up too early with msa- always worth pressing for a 2nd opinion/ neurological physio folks).

I hope you've had a chance to get rested and build yourself up over these 10 weeks. Keep us posted! Kx

[IvyRose64 in reply to Hidden]

Thank you, not sure about being fully rested as I've been working from home. Also been getting the apartment ready for Al's home coming. Will let you know how things go, hospital bed being delivered next Monday.

[IvyRose64]

Well just as we got everything sorted out for a much anticipated homecoming next week Al has to stay in now until 7th July. He's developed a pressure sore and they want it healed before he comes home.

With regard to the funding I contacted a charity called Beacon and was informed that Alan's care should be paid for by the Government during the emergency period as it's a new care package from March (forgot the date) and he's been tested positive for Covid-19. I passed this on to our social care worker who wasn't aware, If forwarded the emails I'd received from Beacon onto her.

Roll on 7th July.

[Polesden11]

Can't really offer any words of wisdom except my prayers. My husband has beeb bed bound since Xmas and now I've been the same for 7 weeks. Getting a hist fitted inn my bedroom cos my husband is in the lounge and we can only communicate via the phone. The dog runs back and forth with the odd message but he's more likely to ear it than deliver it!!!!!Hang on inn there. Where are you based by the way?

Sue x

[IvyRose64 in reply to Polesden11]

Dear Sue, this post is three years old, sadly Al passed away on December 31st 2020 after being taken into hospital on Christmas Day with pneumonia.

I’m based in the Medway towns in Kent. He came out of hospital at the end of July after being hospitalised foe 13 weeks after contracting Covid. I live in an apartment and his bed was in the living room, this despite sleeping separately after 35 years of marriage, turned out to be a good thing. He was not stuck in the bedroom by himself but as this all happened during lockdown things were very different anyway. We had carers come in 4 times a day and he was unable to get out of bed without the hoist

Any advice I can give don’t hesitate to ask.

Best wishes

Nikki