New member - struggling with new caring role

[Loobers_212]

Hi I'm so pleased to find this forum and to hopefully get some advice on my situation. My dad has advanced Parkinson's. Two years ago he had a lengthy hospital stay following a fall. Tragically my mum died unexpectedly during that stay. My dad was subsequently discharged to a care home and then covid happened so he was basically stuck there. To cut a long story short myself and my husband made the massive decision to relocate 200 miles to look after him at home. I gave up my job and my husband got a new job locally. After a lot of preparation, including OT/ social worker assesments he came out of care in November. We realised straight away that we underestimated how hard it would be & that we weren't told the whole story re his needs. I am up multiple times a night with dad and I'm unable to leave him at all so I'm pretty much housebound (except for dashing out to walk the dog when the carer comes to shower dad) I'm exhausted and struggling to find any joy at the moment. My husband and I have no time alone or real privacy. At the moment I don't feel like I'm being the best daughter I can be to dad due to how I feel. I don't think he realises the impact caring for him 24/7 is having on us especially the lack of/broken sleep. I feel guilty as it's only been a month but it already feels unsustainable. If anyone can offer any words of wisdom I'd be very grateful. I love my dad so much. I feel sorry for what he has to contend with but I'm also worried about the health of my husband and myself physically and mentally.

[bowlingbun]

Welcome to the forum. I'm afraid there are a number of people in your sort of situation.
Apologies in advance for all the following questions.
Your answers will help us work out work out where to go from here.

Is it realistic to continue caring for him?
Would more support help?
What is dads financial situation?
Does he own or rent his home?
Have over £23,000 in savings.
Are you an only child?

[Loobers_212]

Thanks for your response. Dad owns property and has savings over £23k so he is self funding. We don't think continuing to care for him long term is realistic judging by how the past month has gone Night sits aren't feasible as we are also staying in the property and the cost is pretty prohibitive. I have a brother locally and he has stayed the odd night to give is a break but the lion's share is falling to us. I can see this causing resentment. Perhaps it would have been kinder to leave dad in the care home rather than give him this taste of home life. We wanted to give it a go but we were probably a bit naive about it all.

[bowlingbun]

Before you make any final decisions ask the GP to arrange an NHS Continuing Healthcare Assessment. IF he qualifies his care would be entirely Free. Look up CHC Framework for full details. Dad is exempt from Council Tax, the claim can be backdated. Also entitled to Attendance Allowance.
Write a list of everything you are having to do, keep a diary of how much time it is taking. Also consider filming difficult behaviour as clear evidence of need.

[Loobers_212]

Thanks for your response. Dad's entitlements benefits/council tax etc are sorted. The Continuing Healthcare Assessment wouldn't apply as it's for nursing care and wouldn't apply to dad (when he was in the home he was assessed as residential only). I'm interested in hearing other people's experiences of taking on a caring role and what to do when it isn't working out. The feelings of guilt are horrendous.

[bowlingbun]

I'm not sure what you mean by saying "dad was assessed as residential only"?
Continuing Healthcare is available for care depending only on needs, whether in a care home or your own home.
If he owns a house, then he should be paying for the care he needs in your home.
It's really important to get the " ground rules" right.
However you also need to be realistic about what you can manage long term.
His care needs, especially at night, are so high, that you might not be able to manage even with more help.
I supported my mum in her own home for many years, but in the end she won't her last year in residential care, with her agreement. She was too frail to live without a team of carers available day and night.

[Loobers_212]

Thanks for your response. What I meant was when dad was in a care home it was for residential care not nursing care so a continuing healthcare assessment wasn't appropriate. After another horrendously disturbed night last night we are going to have discussions about where we go from here. I truly hadn't realised how hard it would be. It was difficult to set the ground rules as such as dad had been in a care home for such a long time. We were reliant on the information the home and dad gave us about his needs which weren't the whole picture unfortunately.

[Flipflopdancer]

Hi Loobers

Our situation very similar, Dad living with my husband and I for past 4 years. Tomorrow my sister and I are visiting a nearby residential home for a chat/tea with Dad with a view for respite care. The guilt is horrendous, but I have a cancer op coming up (it’s a big one) and will be away from home for a few weeks and just want to eventually come home and be myself to rest up and wander around in my PJ’s!

I hope you are able to come to a decision about your Dad’s future care soon. I hope to be able to resume a good dad/daughter relationship, rather than a stressed carer with disturbed nights. I know he will be well looked after, meals on time and all his needs met, he is 94. My husband and I spent the summer apart to cope, then my diagnosis, if you could turn back time eh!

You could try some respite nursing care to see how it goes? All the very best to you and your family.

[bowlingbun]

Please be sure to look up the Continuing Healthcare Checklist Assessment, to see if parents pass this test, as far as you are concerned. If so, then request a proper assessment. If someone needs a lot of help, then that is nursing care, not social care.

[Loobers_212]

Hi Loobers

Our situation very similar, Dad living with my husband and I for past 4 years. Tomorrow my sister and I are visiting a nearby residential home for a chat/tea with Dad with a view for respite care. The guilt is horrendous, but I have a cancer op coming up (it’s a big one) and will be away from home for a few weeks and just want to eventually come home and be myself to rest up and wander around in my PJ’s!

I hope you are able to come to a decision about your Dad’s future care soon. I hope to be able to resume a good dad/daughter relationship, rather than a stressed carer with disturbed nights. I know he will be well looked after, meals on time and all his needs met, he is 94. My husband and I spent the summer apart to cope, then my diagnosis, if you could turn back time eh!

You could try some respite nursing care to see how it goes? All the very best to you and your family.

Thank you for your reply. You've done such an amazing thing looking after your dad for so long. I am struggling after such a short time! I do think the role is undertaken at the expense of your own needs and relationships. I wish you all the very best with your treatment and I hope you get the rest you deserve to recuperate.