Hello this is my second post this evening.
My mother who has Parkinson's disease and Lewy Body Dementia has been bed bound since an unnecessary stay in Hospital in 2016. She has now been bed bound since March 2016. All my efforts to get her walking - private physio etc have not helped.
I find it upsetting seeing her lying in her bed day in day out. When she came out of hospital she was never seen by an OT although she did get a couple of visits by one in hospital who said that she would need four double handed calls a day and a hospital bed. A social services risk assessor came around to see her and said that a hoist wouldn't be an option for her - among other things it would frighten her.
Several weeks ago she had some lucid moments and said is this it now - lying in bed day in day out, never going out again. I might as well be dead.
I was very upset and decided to take action. I booked an appointment with a private OT and she did a report. I paid several hundred pounds for this.
She said that my mother would be suitable for a ceiling hoist and a special riser recliner that dips in the middle. I was told that the riser recliner that she had downstairs would not be suitable in her bedroom but this OT informed me that the chair actually came in separate pieces so that it could have been dismantled and taken upstairs - but no one suggested this. The OT also informed of special slide sheets that actually stay on the bed and can be washed, a turner that goes on the bed, a wedge that props her up - she should be turned four times a day and apart from me struggling myself to turn her, this isn't done by her carers.
The hoist would cost about £2500 which the OT said that the local council should provide. I gave her care manager at social services the report and when I phoned him to see if he had received it. He said yes that he had filed it in her paperwork. I said I didn't want it filed I wanted it acted on. I asked why an OT never came and saw her when she was discharged from hospital and he said that there was no recent OT input until now because there had not been a referral to community OT. People should also have Occupational Therapy assessments in hospital and if at the time of discharge they are below their pre-morbid level of function (ie not as able as they were on admission) then the hospital OT should assess prior to discharge.
He has escalated this and yet another financial assessment will be coming my mother's way. The council have said that it takes time for an OT to come out and what with the assessment, it could be at least three months before anything is done and I might like to purchase the equipment privately instead. (I did buy my mother a stairlift a couple of years ago as social services would not give me anything towards one as my mother had dementia).
I discussed this with my mother's social services carers (she has a couple of private ones as well) and they said she was too far gone to hoist and if it was one I paid for myself then they could not use it as it would contravene health and safety. (Think they must be in a union now).
I have given you all this as background because what I really want to know is, is it worth it? My mother is 88 now and is getting worse. Should I just take the advice of these carers, although my friends and the private OT think differently. Should I just accept my mother's demise and keep her in her bed? Would it be a really awful thing to do, to hoist her into a chair, and have her dressed in her day clothes instead of a nightie? Do I want to do it so that the guilt I have about seeing what she has become is alleviated somewhat? Or is it a good thing to do, even if she only experiences it for a few months or so? Is it worth me buying one, just to give her a better quality of life? So many questions sorry. (By the way she lives with me in my house)
My mother who has Parkinson's disease and Lewy Body Dementia has been bed bound since an unnecessary stay in Hospital in 2016. She has now been bed bound since March 2016. All my efforts to get her walking - private physio etc have not helped.
I find it upsetting seeing her lying in her bed day in day out. When she came out of hospital she was never seen by an OT although she did get a couple of visits by one in hospital who said that she would need four double handed calls a day and a hospital bed. A social services risk assessor came around to see her and said that a hoist wouldn't be an option for her - among other things it would frighten her.
Several weeks ago she had some lucid moments and said is this it now - lying in bed day in day out, never going out again. I might as well be dead.
I was very upset and decided to take action. I booked an appointment with a private OT and she did a report. I paid several hundred pounds for this.
She said that my mother would be suitable for a ceiling hoist and a special riser recliner that dips in the middle. I was told that the riser recliner that she had downstairs would not be suitable in her bedroom but this OT informed me that the chair actually came in separate pieces so that it could have been dismantled and taken upstairs - but no one suggested this. The OT also informed of special slide sheets that actually stay on the bed and can be washed, a turner that goes on the bed, a wedge that props her up - she should be turned four times a day and apart from me struggling myself to turn her, this isn't done by her carers.
The hoist would cost about £2500 which the OT said that the local council should provide. I gave her care manager at social services the report and when I phoned him to see if he had received it. He said yes that he had filed it in her paperwork. I said I didn't want it filed I wanted it acted on. I asked why an OT never came and saw her when she was discharged from hospital and he said that there was no recent OT input until now because there had not been a referral to community OT. People should also have Occupational Therapy assessments in hospital and if at the time of discharge they are below their pre-morbid level of function (ie not as able as they were on admission) then the hospital OT should assess prior to discharge.
He has escalated this and yet another financial assessment will be coming my mother's way. The council have said that it takes time for an OT to come out and what with the assessment, it could be at least three months before anything is done and I might like to purchase the equipment privately instead. (I did buy my mother a stairlift a couple of years ago as social services would not give me anything towards one as my mother had dementia).
I discussed this with my mother's social services carers (she has a couple of private ones as well) and they said she was too far gone to hoist and if it was one I paid for myself then they could not use it as it would contravene health and safety. (Think they must be in a union now).
I have given you all this as background because what I really want to know is, is it worth it? My mother is 88 now and is getting worse. Should I just take the advice of these carers, although my friends and the private OT think differently. Should I just accept my mother's demise and keep her in her bed? Would it be a really awful thing to do, to hoist her into a chair, and have her dressed in her day clothes instead of a nightie? Do I want to do it so that the guilt I have about seeing what she has become is alleviated somewhat? Or is it a good thing to do, even if she only experiences it for a few months or so? Is it worth me buying one, just to give her a better quality of life? So many questions sorry. (By the way she lives with me in my house)
