Partner is in care

[Phideaux]

My partner has been in care for 6 years now with vascular dementia. I have read the five year mortality rate from diagnosis is 61% so has already beaten that.
For the first two years in care he could still call me from the phone in his room; for the next two years he could still answer his phone; another two years on the home has said he shouldn't now go out any more.
He still knows who I am and who he is and can still manage to walk around the home albeit quite slowly. When I visited last he had refused to get up until I arrived at 2pm but got up pretty quick then. His food intake is right down and he has lost some weight- he is now back down to something like what his weight was when he first went into care having put on a couple of stones. Left to his own devices he does not eat much.
Is it normal to say people with dementia should not go out- even in a car with their own partner. This policy sounds very weird to me.
I would not yet describe his current condition as an 'end of life' state. How would anyone else describe the 'end of life' state?

 

[loveahug]

It's very sad, but a regular occurrence, that people with dementia do not want to leave the surroundings which represent safety to them. Even though she always insist we should take her home my mum won't even leave her CH to go out for a cup of coffee

 

[Grannie G]

My plan when my husband went into residential care was to take him out in his wheelchair for a walk by the sea and afternoon tea.

It never happened. Within six months I would say he was institutionalised . I couldn`t even get him to attend the home`s Garden Party. We took him out and he lasted five minutes then said `I want to go in. I don`t feel safe.`

 

[Witzend]

If you feel confident about managing him, I don't see why you shouldn't take him out. I don't see that it's the care home's decision, although they may feel they want to advise this or that.

I took my mother out nearly every visit when it was warm enough, even after she became pretty wobbly after breaking a hip at over 90. Nobody at the CH ever suggested that I shouldn't - they seemed to think it was nice for her. But she would stay in the car - except for getting to the car I didn't expect her to walk anywhere. I would bring a flask of tea and cake, or buy her an ice cream. However quite suddenly she forgot how to get in and out of a car - did not know what to do with her arms and legs any more and would become frightened if you tried to steer her in backwards. So I could no longer take her out.

My personal feeling is, take them out while you can, because you don't know when it may no longer be possible.
My mother is nearly 97, BTW, and will have been in her CH for 8 years in August

 

[CollegeGirl]

It sounds like an odd 'policy' to me, too, if that's what it is. Have they told you why they've reached this conclusion? If they can't give an explanation that satisfies you, then I don't see why you shouldn't take him out as long as you are both happy to go. If he doesn't like it, then that's a different matter of course. Be guided by him and your own instincts.

 

[Feline]

My partner has been in care for 6 years now with vascular dementia. I have read the five year mortality rate from diagnosis is 61% so has already beaten that.
For the first two years in care he could still call me from the phone in his room; for the next two years he could still answer his phone; another two years on the home has said he shouldn't now go out any more.
He still knows who I am and who he is and can still manage to walk around the home albeit quite slowly. When I visited last he had refused to get up until I arrived at 2pm but got up pretty quick then. His food intake is right down and he has lost some weight- he is now back down to something like what his weight was when he first went into care having put on a couple of stones. Left to his own devices he does not eat much.
Is it normal to say people with dementia should not go out- even in a car with their own partner. This policy sounds very weird to me.
I would not yet describe his current condition as an 'end of life' state. How would anyone else describe the 'end of life' state?

I agree with you, it doesn't sound like "end of life" especially if he can get up "pretty quick" when you visit. In my opinion if you feel confident to take him out then they should agree to it, unless there's some reasoning behind their decision. In which case they need to tell you.

 

[daisydi]

It's reassuring to know other peoples loved ones dont want to go out. I had visions of taking my mum out, bringing her back to my house, going to coffee but she doesn't want to do any of it. The care home are encouraging and are quite surprised that she doesn't want to come. We have taken her out to lunch twice since January, the first was for my birthday and she really enjoyed it, the last time was a nightmare. It's her birthday tomorrow so we are taking her out for lunch, well that's the plan then the home are having a birthday tea for her so should be a nice day for her. Finger's crossed!