Lack of mental health support for carers?

All about caring
41

Faye, let me tell you about my mum.

Mum was very ill in hospital, unable to do anything for herself, but mentally OK. The subject of DNR, Do Not Resuscitate, was raised by mum’s consultant.
He explained that resuscitation had risks of further damage.
The alternative was to let nature take it’s course. This was what mum chose. She had suffered enough.

She then had Palliative Care, to keep her as comfortable as possible for the rest of her life.
When normal pain relief wasn’t working, then she had a morphine syringe driver, which kept her pain free. She knew exactly what it was, as dad had one in the hospice when he had prostate cancer.

Faye, I would urge you to ask the hospital to fit one to keep dad pain free. Focus on keeping dad as comfortable as possible.

In my mum’s case, she was transferred to a nursing home, managed by the GP. Months later, the doctor rang me one day to discuss mum, because if they gave her more to keep her pain free, it ran the risk of putting her to sleep.
I reminded the GP that I had Health and Welfare Power of Attorney. The GP must focus on keeping mum pain free, regardless of the consequences.
Mum died peacefully in her sleep a few days later.

Faye, you have to ask yourself if there is any point of giving dad any more treatment to prolong life?
Dad is very, very ill, with no chance of full recovery. Treatments is only going to prolong his suffering, he has no quality of life any more.
Doctors are afraid of being accused of euthanasia of mercy killing and may want very clear guidance from family.
I have never regretted my decision (helped by the fact mum had told me that sometimes she woke up and wished she hadn’t). I have told my son, who already has POA if needed, that when my time comes, I want him to do the same for me.

A few months before mum died, the Care Manager of the care home mum was in, told me that if mum was an animal the
RSPCA would prosecute for ill treatment if she kept one of her dogs alive and prolonging suffering, yet we cannot do the same for people??

Faye, does it help to think about what dad needs, not what you both want? It’s a truly horrible, horrible situation for both of you.
Hospice care is wonderful, I was amazed at the tender loving care dad had in a beautiful room.

Continuing Healthcare, if granted, would FULLY fund a place in a nursing home.

The hospital might be keen to arrange this, as a compromise, so that they got their bed back. You could then know that dad would have his own room and some dignity, knowing that he was well cared for when you were at work, and you could have some quality time with him, with less stress.

42

This is one topic that really gets on my nerves. If I was a drug addict or an alcoholic, there would be so much support out there for me. Because I am a carer, I’m more or less told to foxtrot oscar. Hmm. I’m basing this on what other carers are saying on here. I’ve not approached the NHS about this personally.

I wish there were more charities out there for carers who would provide support, be it mental health or a taxi service for free. I really do. It’s so unfair. I’ve worked with addicts who have people from charities take them to hospital appointments and for food parcels. Why can’t carers have someone who will do this for us?

I am by no means saying drug and alcohol addicts / sufferers are not important. They are and need support but so do carers.

43

Thank you all so very much for all your kind and generous responses.

I know my father is dying - I have googled all the symptoms and he has virtually all of them . Its breaking my heart - I miss him so much already. I need to be strong so I can ensure he gets the end of life care that he needs but I just feel so broken and can’t stop crying. It’s pathetic and I’m annoyed with myself. I need to focus on him but I just want him here for me. I want him to talk to me but he doesn’t even know who I am and can go for days without speaking - I want him to hug me but he can’t move and is in such pain. The drs say they have prescribed pain relief medication (I have asked for a driver ) and just have to ask the nurses but they always say they are coming/are busy. As my father can’t speak they say he is okay but I can tell he is in pain - how he thrashes about in bed and the force in which he holds my hand, how he looks at me etc . They just won’t listen and only spend seconds/minutes with him.

The hospital initially suggested a hospice - I thought it was a good idea and even went to visit it. The Hospice said the Palliative care team in the hospital have to apply on your behalf - you can’t self refer. The palliative care team said no - that he would live for a few more months and that he’s not suitable as his needs could be met by nurses at home (apparently its very hard to get into a hospice and they dont refer many people). I was very disappointed - it had been the hospitals suggestion and now they are saying no. This is why we are now pursuing Fast Track CHC - supposedly so he can get increased care at home but their proposals are ridiculous : just an extra hour per day on what he already had ( two half hour visits ). It won’t work. He needs help with all aspects of personal care - he simply can’t do anything.I challenged the Discharge co-ordinator and she said if im not happy with the proposed care plan I need to come back with a clearer articulation of his needs: normally that wouldn’t be a problem but Im just so exhausted and upset Im fin ding it really hard. I feel under attack form all sides and completely useless.

I feel broken and so desperate - like Im letting him down. I’m sorry but I just hate this life.

44

I’m so sorry Faye and I am thinking about you. The same happened to my Dad. They fitted him with a driver without us having to ask. To be honest, none of us knew what one was. Once they fit it, he won’t be in pain.

Just spend as much time as you can with him.

You are being a wonderful daughter so please don’t think you are letting him down. From what I have read in your posts, you sound like a tremendous person who is loving and caring.

45

Faye

This is so stressful for you.
I notice that the carers uk helpline is open tomorrow between 10 am and 4 pm it may be helpful to phone them for advice too.

I know myself when I am stressed I cannot think straight…the hospital seem to be putting all the onus on you.

46

Thank you. I am actually finding it quite traumatic. Having to look after him when he is so unwell and then come back home alone and read all the paperwork to try and boost his case for more hours when he is clearly so un well. It feels like my heart is going to explode. I dont know why i’m finding it so hard - I know its pathetic but it just feels almost cruel and so, so unfair. Im sorry - hopefully tomorrow will be a better day. Thank you once again.

47

It really is cruel. Don’t blame yourself for any of this. Is your father actually receiving palliative care? I’d keep pressing the palliative care staf if your father continues to be in pain. It’s been almost a month since they told you he’d got three months. They ought to be aware of his changing condition and make sure they keep him painfree with appropriate care.

48

The CHC have finally come back this morning to say that my father is eligible for Fast Track Continuing Health Care. Unfortunately however they have said they will not provide the care that the hospital have recommended that he needs. Their ‘offer’ is actually less than he was receiving from the Council when his needs were less.

I have read lots of the guidance but can’t see how you appeal against such a decision. All the appeal advice seems to be around not being accepted rather than the care being insufficient and none of the appeal procedures seem ‘Fast Track’. Has anyone else ever done this?

Grateful for any advice and a handhold. It is all so terribly difficult doing everything on your own - the chap from the CCG was so rude especially when I asked for the decision in writing. Interestingly what he put in writing was different to what he said on the phone (fortunately I had recorded the conversation). Advice to anyone liaising with the CCG please try to get everything in writing and record calls - you can get an app on your phone that records calls or simply put the call on speaker and try to record (worth practicing beforehand so you know it works).

49

Hi Faye, sorry I haven’t responded sooner. I suspect your dad really need fast track chic palliative care. Is this what’s been offered?

How different is the offered care plan to what he used to have? If it’s considerably less, what is their reasoning? Is palliative care monitoring his condition - important if his health is getting worse. There’s no excuse for him to be in pain.

Just wanted you to know that I have been thinking of you even if not posting. You might consider starting up a new thread here, one named to reflect your current situation. Stay strong. It’s a long tough journey. XXX

50

Dear Rosemary, thank you so much for taking the time to respond and for your kind words - it means such a lot.

We have been told my father will get Fast Track Continuing Health Care- that his application has been successful. However the CCG have said they won’t provide the care that the OT/physio etc in the hospital have assessed him as needing (15 hours less). To be honest I was worried about how we would manage on what the hospital proposed but we definitely could t manage on what the CCG are suggesting - it’s less than what he had before his health declined/ we were told he had three months to live.
I am trying to appeal the decision but the process is very slow and I’m not fully aware of the peak process. Dad has been in hospital since the beginning of December and I’m worried the hospital are just going to try and discharge him. Pals have been no help- I have raised a couple of complaints about how he was treated but the hospital just keep writing to say they are sorry they have missed their deadlines etc.
On Friday they also lost my fathers hearing aid - which he gets from another hospital. That hospital want him to go in person to have a new mould fitted etc but I have no idea how I am going to get him there.

To be honest I feel utterly sedated. I know I need to pull myself together but it’s very hard. I’m not sleeping and am terrified about the future. If we do t get any more care I don’t know what will happen- have to leave my job? I can’t afford the top up fees for a nursing home and the Palliative Care Consultant (who has seen Dad twice ) has said that neither a nursing home not hospice (our preferred choice are suitable)- she thinks he will be best at home with nursing care. That’s fine but even if the CCG accepted. Her proposal (which so far they won’t) Ihe would be on his own for over 18 hours per day. He can’t eat, drink,talk or move in the bed without help. I feel like the pressure is being put on me to give up my job and care for him but, even if I could afford it, the hospital have said he needs double handed care. I am terrified of it being just us at horn and me being unable to meet his needs. I think the hospital will try to force him home soon and whilst I can talk about unsafe discharge I just don’t know what I could actually do to prevent it. I’m so scared.