I’m completely new here and looking for some advice, please.
My dad was diagnosed with Parkinson’s around 12 years ago. He’s been managing with medication and has been mostly self-sufficient until about eight months ago, when he was hospitalized due to kidney failure. I don’t know how much time he has left, and now he’s struggling more with mobility. He doesn’t sleep well and tries to sleep in his recliner, as he can’t get in and out of his low-rise hospital bed easily. Last week, he had a reaction to his flu vaccination, and I ended up staying overnight because he was unable to walk. He’s recovered now, but I noticed he’s really struggling to walk, even with his frame.
I work full-time, often away from home, and I’m the only one caring for my dad. I’ve talked with him before about independent living options, especially since he’s had two falls in the past that led to hospital admissions. However, he’s a proud and stubborn man, so it’s been hard to get him to consider it. After a sleepless weekend, which included lifting him back into his chair when he was too weak to do it himself (safe for him but not for my back!), I think it’s time to revisit this conversation.
He currently has three care visits a day during regular hours. He doesn’t have any savings, but there’s a residential home nearby with independent living options and 24/7 carers available if needed. My question is, would he be able to receive funding for this?
My dad lives in Newmarket, Suffolk. I’d really appreciate any advice, as I’m struggling to balance caring for him with my full-time job, and it’s just me looking out for him. Thank you in advance.
Hi and welcome to our forum, Donnie. We have a very friendly and supportive group here and they will be along soon, I’m sure, to share their own experiences with you.
I understand how incredibly conflicted you are faced with this challenge. Many carers struggle with the same dilemma, their heads and hearts in different places. Have you discussed these issues with your dad’s doctor or Parkinson’s nurse at all? They will be good sounding boards and will know about the resources available to you.
The question of where to get care is discussed here: Home care and care homes | Parkinson's UK Of course your dad wants to stay in his own home but you also have needs and know your limitations. The page may help you look at what’s out there.
Hi Donnie,
Welcome to the forum. I think many carers will relate to your post. As was suggested already, there are pages within the website and the helpline staff are also great. You mention the area where your dad lives and if you have a look at the Suffolk County Council website, there is a section there for Adult Social Care. You can even enter approximate details online and apparently get an indication of funding (not sure how accurate that would be).
Obviously you will need to chat with your dad to see where you go from here. Would he consider going to a Day Care Centre once a week (usually a bus collects), just to get used to the idea? If you were to go away for a few days holiday, would he consider respite? Can your dad discuss medication changes on his next Neurologist appointment to improve mobility? Could any improvements be made around the home to make it safer or try a new walking aid (usually a Falls Team or Occupational Therapy Team can organise a home visit)? Could the GP make a referral to a Physiotherapist, just in case there are muscle issues?
In relation to the care home locally, you would need to apply to your Council for an assessment and see what comes out of that. They may be able to increase the carer visits to four per day or provide CHC funding for extra care hours. For now this may or may not be enough to make living at home for longer more managable? If they will fund the care home, your dad will probably have to make a substantial contribution from his own income/benefits etc (he might already be doing this for existing carer visits). Depending on what that home accepts, some only take private patients, some take a combination of CHC funded/with top up, some take council funded (probably the council funded is a lower market value for homes). You should be able to check that home on the carehome.co.uk website for the funding they accept and input your postcode for alternatives if applicable. It may also depend on your dads needs and whether the home can meet those and whether there is a place if and when he needs it.
The independent/sheltered living you describe, i think is referred to as extra care housing. There are rental and purchase options and your Council will have details of them locally, waiting lists tend to be long as typically people would stay there for a good amount of time, meaning places might not come up very often.
In the assessment please do let them know about the heavy lifting etc that sounds very tough on your back. I think if your dad agrees to the assessment, apply ASAP as it can take a while.
Thank you so much, its the first time I’ve reached out for support. I will definitely look into yours and anyone elses advice, its so nice to not to feel so alone for once.
My job takes me across the country so Im already up to my eyeballs manic and overwhelmed.
Thank you so much, I will look into these things asap for sure.
Ive actually just had a conversation on the phone to my Dad. Ive told him Im really struggling and I cant emotionally cope anymore. I said it calmly and told him just to think about what I’ve said for a few day’s. Fingers crossed
I really appreciate you taking the time to respond to my post. Its very reassuring.
Dads parkinsons nurse has discharged him and told him she cant do anymore for his trembers. I think shes discharged him due to a recent diagnosis of kidney failure despite him not showing signs. Hes declined dialysis so not sure how long his has left bless him.
I will definitely go through your advice asap so thank you for that
