Rights?

r3nu4l

I have a parent with a terminal degenerative neurological condition that is progressing rapidly. She insists on climbing the stairs despite it taking 15 minutes to do so and tiring her dramatically. She has not seen her occupational therapist in over 10 months and keeps putting it off. At the moment she is becoming a danger to herself and only two days ago I had to help her down the last five stairs because her legs started to go from underneath her. I am home on holiday at the moment and live in another country.

I have tried to talk to her about getting the OT back to assess her and help her with getting a stairlift installed but she is putting this off. What are my rights in relation to this as a concerned relative? Can I call the OT myself and inform him/her that I am concerned about my mother's welfare?

Azures

r3nu4l wrote: »

I have a parent with a terminal degenerative neurological condition that is progressing rapidly. She insists on climbing the stairs despite it taking 15 minutes to do so and tiring her dramatically. She has not seen her occupational therapist in over 10 months and keeps putting it off. At the moment she is becoming a danger to herself and only two days ago I had to help her down the last five stairs because her legs started to go from underneath her. I am home on holiday at the moment and live in another country.

I have tried to talk to her about getting the OT back to assess her and help her with getting a stairlift installed but she is putting this off. What are my rights in relation to this as a concerned relative? Can I call the OT myself and inform him/her that I am concerned about my mother's welfare?

Can you set a room up downstairs as a bedroom? Or can you set an upstairs room up as a sitting room? That reduces using the stairs. It sounds like a stairlift might not be appropriate now- she might struggle to get on/off it and councils sometimes decline to put stairlifts in for neurological deteriorating patients, as they can be risky. Stairlifts don't solve everything. ( obviously it depends on the diagnoses too - im generalising)
I don't think you have any rights to force your parent to see any health professional. You could probably talk to the OT yourself though.
Is there another relative or friend that could talk to her? Just to take the heat of the situation? Or, take a deep breath and ask your mum what she wants to do about the problem with the stairs 'when she gets to a stage she cannot manage them anymore' . She seems to think she can still do it. Then listen, don't jump in and tell her your opinion- give her a chance to come up with the solution herself.
I would also refer her for a homecare assessment.

r3nu4l

Thanks Azures. She refuses to convert any rooms to make things easier. She has refused all offers of help from any relatives other than my Dad. However, she is not okay using the stairs any more. Only two days ago I had to help her down the last five steps because her legs went from under her. It was purely by accident that I found her coming down the stairs because she told no one that she was coming down.

Even after recognising that she wasn't able to get all the way down the other day, she then went up and down again and refused help. She was okay this time but I'mworried that my Dad will be in the garden one day when she decides to come down and then she gets stuck and falls.

I've had an Aunt call me from Ireland to ask me what I'm doing about the situation because they are both refusing all offers of help, have refused home help and my Dad wants her to get a stairlift but my Mam is saying 'no'.

Interesting to hear that stairlifts aren't always approved. Good to know. It looks like she may eventually have to stay on one floor for the most part. As it happens my Gran lives in a granny flat on the side of the house and has her own loo but my Mam refuses to even use that, instead using all her energy to get up and down the stairs.

I'll try calling the OT today if I can prise his/her name out of my Mam. My Mum's condition is so rare that there is no patient association in the country and no specialist nurses either. She has a neurologist but my Mum has flat out refused to allow me to speak to him.

RainyDay

Honestly, I wouldn't worry too much about your rights in dealing with the OT - just call them. They'll be well used to these situations, and they'll have their own ethical code about how they handle them.

Eph1958

Hi, seem like your mam is in complete denial of her condition and the associated risks. If you had a family doctor I would approach him/her about the situation and perhaps "have a word with her". Single-minded people (a bike like myself!!) tend to take a bit more notice when someone in authority, that we know and respect, gives us advice. Best of luck.

Ephraim.

Azures

The OT should be within a primary care team, the nurse or GP should be able to give his details. It does sound like she is in a lot of emotional distress, and so not able to make a decision herself right now. Not managing the stairs can be a very big moment, a realisation she is getting worse, and then a denial. Is there a counselling service available? Just to help work through these things? even the local priest might help, and listen, if she is that way inclined... All the best, it's tough- you might need a counsellor too!