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Hi Blue Mermaid
What an enormous relief that must be for you- so pleased to hear you got the CHC funding-at least some people qualify! I ha ve everything crossed dad will get it but my more immediate concern is that he seems set for discharge with no progress on the pain management- nothing seems to be helping so I can see we will be back to square 1 upon his discharge.
Thank you Henrietta. It is an enormous relief as you said. I really hope your dad gets it too. Let's hope you have someone fighting your corner at the full assessment, like the social worker did for us. I think she was genuine in her fight for Mum and wasn't just helping us so the local authority wouldn't have to pay anything towards care. She said herself she is passionate about helping people to get CHC, because so many patients who should get it don't.

I was reading your first reply again. I wonder why they are not doing the full assessment in hospital, (like they did with my mum), rather than waiting until your dad is discharged? Maybe it's because my mum's in rehab hospital, rather than general hospital now and we all know how quickly they like to get patients discharged from general hospitals.

I really empathise with the pain management problem and your fears of being back to square one when your dad is discharged. Has he been seen by the pain management team in the hospital? My mum was seen once at our insistence (they were recommending outpatients). That's when they prescribed the Oramorph but the pain is still uncontrolled and nobody is doing anything about it. I don't see how they expected to get it under control with just one appointment. When I spoke to Mum's GP a while ago, she was talking about the Oramorph patch. Does your dad have that already? Mum has the liquid in hospital.

Maybe you could push for your dad to be seen by the pain management team in the hospital before he's discharged (if he hasn't been seen already)?

Also, is your dad under the care of any hospice nurses? My mum is under the home care team of a local hospice and they were trying to get her pain under control before she was admitted to hospital. They phone the hospital every so often for updates on Mum's discharge, so I think they'll be involved again once Mum is home. I thought they only helped patients at end of life but they help patients at all stages of long term incurable illnesses. The hospice nurses here also have regular meetings at mum's GP surgery to discuss each case.

I really hope someone can come up with something better for your dad.
Henrietta, Its best that you insist on getting him looked at by the pain management dept in the hosp.

Blue mermaid, I'm glad that your mom's under Hospice care. They tend to care a lot. My dad was under hospice care too, until we decided that it was best to move him to an adult assisted living facility here in Montana itself called Prestige Care. The facility looks great too- they've got a picture of it here- http://www.prestigecare.com/assisted.php?id=52 It's been very difficult for me since we moved him there, but we decided that it was best for his health, and he'll also be getting around the clock care. It was getting really difficult with the babies and my job. He didn't qualify for CHC through, but we did try a lot. I'm glad that there are people here who do get CHC.
Hi BlueMermaid and Hilly, thanks both for your replies. I've not been told that he is being dealt with by a specialised pain management clinic. He is on an elderly peoples ward and as far as I know just being dealt with there. efore Dad went to hospital I was advised to get a referrral to the pain management clinic by someone on here and also by the OT who siad I needed GP referral , she spoke to GP or rather left a message and GP rang me back to discuss it and said they would rather deal with it at the surgery than in the pain clinic. I thought perhaps this was due to Dad's long history.
This week I have been given some info about the pain clinic and it seems from first glance not to be that suitable for Dad . It seems to reuire somewhat active participation from the patient, attending group therapy and partaking in physio type self help and brain trining exercises for want of a better description. I can't see my fatehr being up for that in any shape or form. Perhaps I have the wrong end of the stick but it didn't look hopeful.
Before admission Dad was on Dyhydrocodeine, Paracetamol and Oramorph, now he is on Fentanyl (morphine patch) paracetamol and Oxycodone (liquid morphine) . The first cocktail was making his dangerously confused, he now seems more himself but I think they have lowered the dose.
He has also been taken off warfarin permanently which Dad told me tha the Dr had said may have contributed to the pain, although the Dr told me that he wwas coming off that because he had a greater risk of a bleed on the brain than a stroke if he came off it and high risk anyway with Atrial Fibrilation.
Like you Bluemermaid, I also thought hospices were only for "end of life" and nothing on Dad's list of ailments is regarded as terminal so far as I can tell. How did you first get help from hospice? Was it self referral? is it means tested? I had never thought about help from this angle?
Hi Henrietta

It was Mum's gp who referred her to the hospice home team. It's not means tested. The gp referred Mum when I was desperate for sleep, as she thought they did a night sitting service. It turned out they didn't do this but came to the house to do an assessment and wanted to help with Mum's pain management. You can also phone them any time day or night for advice and support (at night, you get through to the actual hospice but there is always someone to give advice and they have doctors there to give medical advice too). They also support carers and have complementary therapies etc that you can go to and counselling. Being ill myself, I haven't been able to get to any of those but I have phoned the nurses for support. So far, they seem like the only people who really care. They phoned regularly and as I said, have been phoning hospital from time to time to check when Mum is coming home.

I have heard what you said about the pain clinic as well and Mum's gp was reluctant to refer her too, as she said there's such a long waiting list. Like your dad, my mum wouldn't be able to cope with the outpatients appointments or the treatments you refer to. The pain management team in the hospital just dealt with the drugs in Mum's case though, so if you could get them to review your dad's medication, maybe they could come up with something better or maybe you could look into your gp referring to the local hospice home team.
Hi Hilly

So sorry to read your dad was refused CHC. You probably already know but you can try again in the future. Unfortunately, it does seem to partly depend on who does the initial checklist and then the full assessment, how well they understand the health issues and whether they are prepared to listen to you. As I said, I was in a meeting with them for 3 1/2 hours and I was listened to in every section of the form.

You might get a completely different result with someone else doing the initial checklist and then different people in the full assessment too.

I can imagine how you must feel since you had to move your dad (I will have a look at the link). I'm dreading that happening to us. I hope he will settle in ok and that your worries will then lesten. It's heartbreaking.
I had the first call from CHC worker today.

She said she's been talking to sister of ward Mum's in and they are recommending 2 carers with 4 visits a day and overnight care. She said, that was going to be too expensive though and would we consider a live-in-carer. Once again, I am amazed.

She said she's going to get some more quotes to compare live-in to the other option.

I spoke to Mum about it and we agreed, we'd have to try the live-in care if that's what they decide. The CHC worker reassured me that if there were any problems, we would be able to change carers.

There's pros and cons to both options.

I asked when we would have to have a bedroom ready for them by and she said Monday or Tuesday of next week! No pressure then! Surely not Monday, as that's the day equipment being delivered. Could be later that day or Tuesday though I guess!

I was already panicking about so much going on and brother's coming over again early on Sunday to remove old profiling beds from upstairs. I had an urgent dentist appt yesterday and I very nearly didn't make it. Had an attack of ibs just as I was getting ready to go and thought I'd have to cancel. Only just made it there in time. Hygienist said I have swollen glands in neck and asked if I'd had a virus. I said no, so she asked if I was run down. I told her I was and why. She was very understanding. I have to go back on Thursday.

I went to visit Mum after the dentist. I'm not coping at all well at the moment. With my illness I can't do too much at once. Need a few days to recover inbetween but that's not possible at the moment. Need to clean the dining room before the equipment arrives as well. I bet brothers will make loads of dust everywhere on Sunday, so then I'll have to clean up after them. In the middle of all the phone calls today, the Stannah man called and asked to come and service the stairlift, so had to say yes to that as well (have been putting him off for weeks). There was something he found that needed fixing, so at least that's one job finished with.
When did you last have a carers assessment? As a poorly carer, someone should be helping you. Why not ask the CHC people if they can provide someone to help you prepare the room, or suggest someone who can help. Maybe get the person who is going to live in to come early on a daily basis? There might be some sort of volunteer service in the area which they can tap into. Every area is different, so I can't be more precise I'm afraid. There doesn't seem to be any consideration of your needs whatsoever. When I was sorting out my mum's house, I explained that I couldn't visit daily, that sorting the house out so it was sold to pay for her fees was top priority. (I also have health problems which make me tire easily). So maybe explain to mum that you need to use the time when you would be visiting to prepare things for her return? Mum's CHC care will be entirely free. Perhaps she would agree to you using some of her money to visit by taxi to save your energy?
Hi BlueMermaid
I'm not sure which the better option is - pairs of regular carers or a live in carer. Would you feel happier knowing someone was around all day just in case? If not then I think I should prefer the first option if the cost can be met of course. Will these carers be helping with meals?
I guess a live in carer would be more help there.
I feel the fact Dad needed 4 meals a day was overlooked by CHC who decided that "daughter sees to that" i have just had an earful from Dad of how awful my meals are and how I can't be bothered to cook properly. I seized the opportunity to tell him I would be ordering the equivalent of "meals on wheels" for him 3 days a week, Saturday which is my mega busy day, Monday which is my day off and Thursday middle of week. He won't like that and was already grumbling about the cost of things this afternoon. I'm afraid the worm has turned and he has no choice anymore.
I had swollen glands in my neck a lot when I worked full time but not had it since I left work. I think the combination of full time job plus hysterectomy plus menopause plus Dad was one stress too many. It certinly sounds as though you have more than enough stress right now so try to see light at the end of the tunnel and focus on not making yourself ill. I think the best way forward is to try and work out which options will make you the least long term work and duties. Then once things are in place you can take a step back . Develop a thick skin in case you get about "can't be bothered!" etc and go for self preservation.
Can't sleep again...a million and one things going around in my head.

I've not had a carer's assessment in the past Bowlingbun. An OT and social worker did tell me I was entitled to one but I never actually asked for one afterwards.

That was the problem in my original post, the hospital OT just expecting me to clear out a room ready to put the bed and equipment in, in the space of a few days and taking no notice when I said I'm not well either. I had no luck finding a volunteer service then. Contacted Age UK but they didn't have a service to move furniture or advise where best to place equipment.

Now, it's the same again. CHC worker just expecting things to be in place for Mum to come home early next week. Not once to do any of them ask you if that's ok and can you be ready in time or do you need any help to get things ready? Doesn't even seem to enter their heads.

Anyway, the carer can have my bedroom for now. Mum was sleeping in there for a few months before, as my bed was the best of a bad lot, comfort wise for her. I've been sleeping in Mum's room, on an inflatable bed I bought a few years ago for temporary use. It's very comfy - one of those that is the same height as a normal bed. Just hope it doesn't get a puncture, as I can't find the puncture kit that came with it!

It's a very small room but will have to do for now. No way, can I clear out the spare bedroom for them and buy a bed in that amount of time, with my limited energy and everything else going on. No idea where she will be able to put her clothes though, apart from a very small rail in the spare room, which would only fit a few items. The small room is not the kind of place she could go and sit in to have her own space. It's only big enough to sleep in. I don't know what facilities we would be expected to provide. They haven't told me anything, apart from she'd need a bedroom. I keep saying "her". It could be a "him" but I hope not.

I'm dreading them using the kitchen and bathroom. I'm very particular in those areas and a bit of a hygiene freak in the kitchen!. It caused some arguments when my brother was living here for a while and it was a relief when he left and I got the kitchen back to myself (Mum couldn't do anything in there anymore).

Mum already pays for me to take a taxi to visit her, as I don't drive. Sometimes, I get a lift with each of my brothers. I don't manage to vist every day, although I wish I could.

Sorry to read you have an illness that makes you tire easily as well. That makes you even more of a superwoman in my eyes, doing all that caring when you weren't feeling well yourself.
80 posts