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[Boots14]

Hi everyone

I'm not really sure what I'm looking for here, other than solidarity, or advice perhaps, as I'm feeling a bit lost right now. I'm 34, and during various stages of life have had bouts of moving home to care for my parents (now in their 70s). Various issues, including alcoholism and liver failure, fractured and compacted discs, pulmonary embolism, cardiomyopathy and breast cancer. Without boring anyone with the very long backstory, I've just taken emergency leave to be at home with mum after a hospital admission for several episodes of loss of consciousness, and I am really struggling to handle it this time. I feel that I can't leave her as she is so independent and self sufficient, she doesn't understand taking it easy and has had another funny turn since I've been here. She is also usually the carer for my dad, and I've been looking after them both so she can try to have proper recovery time. On Monday I have to go back to work, and I am so riddled with anxiety I'm not sure what to do. My mum is the most loving, caring person in the world and would (and does) put herself out to look after others. My dad loves her, but is so used to being looked after he doesn't seem to understand the pressure and worry she and I are under with his own health problems and her own. How do I try an balance everything and does anyone have suggestions for kind, understanding carers who might be able to help in the mornings and evenings? Thank you in advance (and apologies for the essay!)

[Hidden]

Sorry to read about issues strain under ... help boils down to finances in lot of cases

There are two routes private funding or council

Guess you need to know what there financial position is and if on benefits.

I know lot of people own there own houses 🏠 so organise care between family members SO no charges are levid on estates

I would talk to Citizens Advice or AgeUK about options as internet is not place really to talk about financial maters of any description.

ageuk.org.uk/information-ad...

[Boots14 in reply to Hidden]

Thank you so much for your advice-they aren't on benefits, so I know I'd need to go down an alternative route but it's just a bit overwhelming emotionally and in terms of where to start. I really appreciate your suggestions, and thank you for your response

[Hidden in reply to Boots14]

Guess it all depends on Needs IF medical you could say district nurses need to call more BUT they usaly follow hospital discharge stuff.

I know from talking to my dad’s carers lot of people who do not have council funding get adhoc service from private carers firms

A single call is £27 for one carer for 45 mins a think from most care angancy AND this nothing stoping you calling one off own back and hammering out deal BUT like a say it’s all down to finances pensions etc

[Bella395]

First of all, accept that you cannot do this alone - you need help. Are you in the UK? If so, the first step is to ask social services for an urgent carers assessment. Your parents need assistance but you don’t have to give it on a daily basis. Make a list of their needs and how these can be met. You should tell the social worker about your anxiety because it will help to formulate a suitable care plan. You cannot continue to care when you are ill yourself.

Your mum is a lovely, giving person by the sound of it and the temptation might be to give up work to return her kindness. It is your decision but I would advise you not to do this if possible and to become the care manager for your parents rather than the care giver. Many people give up work but find themselves in serious hardship when caring comes to an end.

Have you applied for all relevant allowances such as Attendance Allowance? If they are awarded middle or higher rate someone else (not you) could claim carers allowance for them which would further relieve you of the burden of care.

[sassy59]

Hello Boots14 and welcome to this kind and caring forum. You have an awful lot to deal with and must feel totally drained.

Help is out there and you can find lots of good carers in your parents area online. Obviously you need to speak with them and arrange a meeting.

You’ve had some good replies and I hope you can get some much needed help. Wishing you well. Xxx

[Bella395]

Boots14 - I forgot to ask if your parents own their own home and if they have savings. If so, it is possible that should residential care become necessary, they might have to pay for it. They wouldn’t have to pay if they qualify for Continuing Health Care funding. You can ask the social worker for an assessment. If your father goes into care the home is disregarded because your mum is over 60 years of age.

Bear in mind that with this level of need, even with carers it will be difficult. Sheltered housing or a care home would make things easier for you. You do need to take care of yourself or you won’t be able to help your parents.

A carer and needs assessment is the first step.

[Hidden]

Hi Boots14 and welcome to our Care Community. I hope you'll find what you are looking for here.

This is a difficult and sudden change for you, and I think the first thing you might do is to try not to worry about everything all at once, and to understand that you can't instantly cure all your parents' problems.

Secondly, although it sounds contra-intuitive, you should take care of your own situation first with regard to work and your own domestic situation. Because if you don't build a firm foundation, any care you try to put in place for your parents might well fail.

It's never been harder, through health and social cuts to get a proper care package arranged for your parents, but one of the most useful things is to decide what you can and can't do. That way you won't start out with external agencies simply assuming you can, or will, take on their entire burden.

Next the guilt. Don't do it! Easy to say and not so easy to carry through, but you can't solve all of their problems. You sound like a caring and helpful person and you want to help as much as you can. I'm sure you'll find a way in which you can, and doubtless should, but guilt at their situation isn't constructive for them or helpful for you.

I see you've already received some great advice from our group members, JeffAjaxSmith, Bella395, and sassy59, and I would think between them they've given you the most practical advice for a way forward.

So with nothing more to add myself, welcome again, and please never apologise for posting an 'essay'. That's what we are all here for; to listen and to offer our support and personal knowledge, which has mostly been gained from experience.

Hope to hear from you again with an update as to how it's going.

Very best wishes.

[Boots14]

I don't know what to say. I am absolutely floored by the sensitivity, kindness and thoughtfulness of your responses. I came here hoping to find a little understanding and the empathy and compassion you've all shown is a little overwhelming. Thank you all so much x

I wanted to respond to you all because since my last (and first!) post there have been quite a few changes, which is why I haven't been on here to respond and thank you individually. I know you said not to apologise for the essays @callendersgal, but this might be a long one!

I initially wrote that I was supposed to be back at work yesterday after caring for mum after she was discharged following on from her falls, but she had another collapse and blackout on the Sunday night, and this time she really injured herself. Luckily I was there and got to her seconds after she fell, but when we got her seen in A&E she had fractured her collarbone, knocked out a tooth, smacked her head (she's on warfarin) and was in serious shock. Long story short, when she was finally seen they immediately rushed her into resuscitation as her heartbeat was so slow (34). She has cardiomyopathy (long term) and a left branch block. Apparently, she had suffered a full block, which hadn't been picked up when she was admitted the previous week for the blackouts, so they rushed her to another hospital with a specialist heart unit. During this time, my dad also fell at home (my sister and I were at the hospital with mum so he was home alone) and although he seemed ok initially, a few hours later he was finding it hard to breathe and was in so much pain he couldn't move. The paramedics assessed him and took him in Monday night/yesterday morning, and it turns out he had five fractured ribs and an internal bleed, couldn't walk or speak and was so out of it and confused he couldn't hold a conversation. The A&E doctors told him he was an extremely ill man and they needed to work out what was causing the bleed, and he was sent to a ward. That was yesterday. Today, the doctor in charge of the ward tried to release him. When my sister and I rushed down to the hospital to speak to them, whilst they were sympathetic they explained that it was an urgent care ward and he seemed stable-his pain was being managed by them and the bleed seemed contained and wasn't getting any bigger. We told them there was no care package in place yet and asked who they thought they were discharging him to the care of, when he had no house keys, no shoes, his usual carer (our mum) was in hospital herself and my sister and I wouldn't have known he was being discharged had he not called us. We begged them to reconsider and to assess him properly, and a junior doctor reported that his last xray had shown that the bleed had increased. Significantly. He was dismissed, as were our concerns, although they agreed to keep him in one more night to appease our fears and give us time to get some emergency care. An hour later the doctor called me to tell me he was being rushed to the cardio-thoracic unit of a specialist hospital, because they had re-assessed his xray and his bleed HAD spread and was potentially very dangerous. Dad had a drain inserted within minutes of his arrival at the other hospital, and was put on oxygen because the bleed was putting pressure on his lungs and making it hard for him to breathe.

Ironically, both parents have ended up at the same hospital, which is a plus! My concern and anxiety about the whole thing is this-I asked you all for advice when they were unwell and needed assistance, and you came back with advice, practical suggestions, specific bodies I could contact and support. The hospital (and I don't blame them, they are magnificent but chronically understaffed and underfunded and in desperate need of beds) brushed off our fears and worries, and were prepared to release clearly unwell people without any questions about what would happen at home. I cannot fault the care they have both received, or the consideration and kindness they have been shown, but there is a massive issue here, and with many other departments too.

When we spoke to care agencies, they explained that as both the adults requiring care were currently in hospital, to progress with a care package the hospital had a responsibility to carry out an assessment, the results of which would then be used going forward. This did not happen. At all. I'm not sure who is right here or what we do now, but as they are both going to need a high level of care initially, we are going to self fund and then reassess a little later down the line. Has anyone experienced anything similar?

I want to thank you all so much for being so kind to me, and taking the time to read and respond to my call for help. I felt very alone and lost and without direction, and you have all helped more than you know JeffAjaxSmith, Bella395, and sassy59 x

[Hidden]

Thanks so much for taking time to respond to us all at what is clearly a really difficult point in yours and your parents' lives. Once again, no matter how long your post is, please don't feel diffident about posting. We are here to listen and to help where and whenever we can.

Further thanks for your positive response to our help. The responses that come from this group have been built up through personal experience, sometimes bitter, because of the huge failings in the whole of the Care system (or more often lack of an effective system).,

And so sorry that you are finding out at the sharp end how difficult and frustrating it is to get some sorely needed assistance and funding.

I'll leave others with better experience to answer your further questions but just wanted to say 'thanks' and also to ask you to let us know what your experiences are on your journey with your parents' ongoing care. It all helps to build up a good knowledge base that helps us to help more effectively in future.

Very best wishes and hoping for a positive outcome for both of your parents. This must be such a worrying and stressful time for you.

[Bella395]

Hello Boots14. What a stressful time for your family. The hospital should have a safe discharge policy and the staff were wrong to try to send your father home without support. Your parents may be entitled to free care for a period of time - it might be 12 weeks. However, before discharge you should make enquiries about them both having a Continuing Health Care Assessment. This can be done in hospital and would entitle them to NHS funded care if their needs meet the requirements.

This is a complex situation and it might be helpful if you sought further advice. CarersUK or AgeUK might be able to guide you through this traumatic time.

I hope that your parents make a recovery and you can find them a suitable care home placement. Thank you for posting an update.

[lell1]

Hi boots14. And so the fight continues! Have ur parents got a contact with adult services, within social services? There should be a social worker involved with each parent in organising safe release to ensure the right help is in place before they are released! Getting chc is an uphill struggle, but the basics have to be in place before vulnerable patients are released. There has to be one medical professional and one social worker, and each parent/parent and advocate, must review the situation together. You should also have carers assessment completed by local carers uk, they can help you and your sister and possibly put you on to any charities that could support both carers and ur parents?