eed Advice: Support for My Dad When I Have Limited Capacity

Living with Parkinson's Carers, friends and family
1

Hi everyone, I’m looking for advice about what ongoing support exists in the UK for someone with Parkinson’s.

My dad often messages me saying he’s unwell or that his symptoms/medication aren’t working, and it’s getting worse. He won’t proactively reach out for help himself. He won’t contact the Parkinson’s nurse or sort things unless someone else pushes him, or does it for him (usually the latter).

I currently have my own health conditions and medication I’m struggling to keep on top of, and I have very limited capacity right now.

I’m capable of organising things and would love to be in a position to do more consistently, but I need to prioritise my own health so I can get better. I just don’t have the bandwidth to take on everything I would ideally want to do for him and feel he needs, which I feel guilty about.

I’m trying to find out what support exists that can regularly check in on him and help with things like:

asking how he’s doing

noticing when symptoms or medication might need review

encouraging or reminding him when to contact the nurse or GP

general wellbeing support

He struggles to initiate things himself (like me), and I really need other people involved so it’s not all falling on me. I’m neurodivergent and suspect he might be too.

I’ve encouraged him to contact Parkinson’s services and to get involved with groups, but he’s very reluctant. I think he would benefit from meeting others going through it, as he often asks me questions I can’t answer, even though I try my best.

Any advice on services through Parkinson’s nurses, NHS teams, social care, or community support would be really appreciated.

2

Good afternoon .. Gosh your Dad does seem to want you involved [more] in his life. Perhaps a bit of emotional blackmail from him. From what you say he can manage but cant be bothered to do things for himself.

Most here are lucky if they see a Parkinson’s nurse once a year and a neurologist nearly never.

If he has money he could easily pay for help. Maybe get married or get an understanding girlfriend.

There is a free helpline here, the nurses here are excellent, perhaps give them a ring and see what advice they have. 0808 800 0303.

I am 71, live alone, have Parkinson’s and other conditions. I see it as my responsibility to look after myself.

Perhaps contact his GP and voice your concerns.

An assessment for an elderly man who cannot look after himself typically involves evaluating his physical, mental, and social needs to determine appropriate care options.

Best wishes

Steve2

Physical Health Evaluation

  • Assess mobility, strength, and balance.

  • Check for chronic conditions (e.g., diabetes, heart disease).

  • Evaluate nutritional status and dietary needs.

Cognitive Assessment

  • Conduct tests for memory, reasoning, and decision-making abilities.

  • Screen for signs of dementia or other cognitive impairments.

Emotional and Mental Health

  • Evaluate mood and emotional well-being.

  • Identify signs of depression or anxiety.

Social Support and Environment

  • Review living conditions for safety and accessibility.

  • Assess the availability of family support or community resources.

Care Needs Determination

  • Identify daily living activities the individual struggles with (e.g., bathing, dressing, cooking).

  • Consider potential interventions, such as in-home care, assisted living, or nursing facilities.

Professional Involvement

  • Engage healthcare professionals, such as geriatricians, social workers, or occupational therapists, for comprehensive assessments.

  • Utilize standardized assessment tools (e.g., Katz Index of Independence in Activities of Daily Living).

This assessment helps in creating a tailored care plan that addresses the individual’s specific needs and preferences.

1 Like
3

Thank you for sharing this. It sounds like you are doing everything you can for your dad while managing a lot yourself, and it is completely understandable to feel stretched. You should not have to carry this alone and there is support available.

Your dad’s Parkinson’s nurse is usually the best first point of ongoing support. They can review symptoms and medication, help spot when things need adjusting, and link him into other services. If he finds it hard to initiate contact, you can let the nurse know what is happening and ask if they can reach out to him proactively.

Local groups can be a lifeline for people who find it hard to reach out themselves. If he is reluctant to attend in person, some areas offer online groups or gentle introductions which can make things feel less overwhelming.

If you would like to talk things through or get help finding the right local support for him, you can always reach us on 0808 800 0303 or [email protected]. We are here for both of you.

Parkinson’s UK Moderation Team