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Elderly parents
Original poster

Phantom pain

11 replies

bluebells34 · 01/12/2025 13:19

My father has dementia. I have been a carer for at last 6 years. He refuses to go into a care home and has carers 4 x a day. Lives in a large 5 bed cottage but confined to one room with a hospital bed and commode.
I have had sleepless nights with the life line going off, hospital admissions, people in the village contacting me when he has wandered etc
When I visit I feel physically ill. I have arthritis and the pain is so much worse when I visit him. Has anyone else experienced this? I almost 'morph' into being like him with poor mobility. I feel like I am having a panic attack and can only stay for a short time as I want to rush out of the cottage (PTSD maybe as my mother was so ill when she was living there and passed away)

OP posts:
Coffeeishot · 01/12/2025 13:23

Your body is physically reacting to trauma, and stress I have a physical disability also, and symptoms can exasubate if im in a stressful situation. Have you had counselling do you have a sibling to share the load,

Original poster
bluebells34 · 01/12/2025 13:32

I have a sister but the caring role falls mainly on myself as I live closer to my dad. I have not had any counselling but aware it is getting worse. I have tried breathing techniques but nothing works. I don't want to be his carer - never had a good relationship with him. I feel trauma every time I walk into the cottage

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Coffeeishot · 01/12/2025 13:43

Ok i think you probably need to see a Dr and adult SS concerning him. He might need to go to a care home, you don't have to be his carer, but adult social services mighy help you.

Coffeeishot · 01/12/2025 13:44

The Dr for you. Go to your gp ask if there is a mental health nurse at the surgery.

PermanentTemporary · 01/12/2025 15:36

I feel for you so much, places are difficult and hold a lot of emotion.

I wonder if you can step back from going there?

If other people contact you about him, either you or they could call the police or an ambulance? Tell them the truth, that you are too unwell to go there at the moment.

Talk to your GP about some bereavement counselling.

Original poster
bluebells34 · 01/12/2025 15:53

He is reliant on me to do his food shopping. Sister will do this some weekends but will message me asking how my visit went with dad as her expectation is I should visit at the weekends. She leaves notes in the kitchen asking me to chase up medications etc A family friend visited yesterday and has not seen him for years. We sat on kitchen chairs in his living room with no space. I felt claustraphobic and panic. He has double incontinence and the inevitable happened - there was a vile smell and I have never seen anyone make an excuse to leave so fast even though she had driven 2 hours and only been there an hour. I felt so embarassed and guilty. Others will want to visit over Christmas but I am not putting myself through it again as selfish as that sounds.

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Lookingforthejoy · 01/12/2025 16:00

If he is wandering then he isn’t safe. You need to ask SS for a needs assessment.

BlueLegume · 01/12/2025 16:02

@bluebells34 firstly please look after yourself. Secondly what your father wants and what he needs are very different things. He sounds like he needs a nursing facility rather than a care one. Could you engage with SS? Tell them you are not able to continue and could they suggest a respite package for him in a nursing facility. It may then give you time to heal.

Original poster
bluebells34 · 01/12/2025 16:11

I work in social care. His social worker has deemed he has capacity. When I said it was making me poorly and I can not carry on she said its not about me it is what my father wants ands his best interest which is to stay at home. He has no savings and social care do not have the budget to fund care - I know of cases where people are hoisted with 2 carers 4 x a day - wander the streets and still remain at home. He refused to go into respite over Christmas stating he felt un wanted

OP posts:
Lookingforthejoy · 01/12/2025 16:26

bluebells34 · 01/12/2025 16:11

I work in social care. His social worker has deemed he has capacity. When I said it was making me poorly and I can not carry on she said its not about me it is what my father wants ands his best interest which is to stay at home. He has no savings and social care do not have the budget to fund care - I know of cases where people are hoisted with 2 carers 4 x a day - wander the streets and still remain at home. He refused to go into respite over Christmas stating he felt un wanted

Was he deemed to have capacity before or after the wandering?

Original poster
bluebells34 · 01/12/2025 16:31

After the wandering. Recent re assessment of capacity and deemed to have the capacity to decide he wants to remain in his home

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