Cruel to be kind?

[eden]

After a rapid daily deterioration over last month, a medical consultant was called out from the hospital to see mum and had her admitted yesterday for potentially a few weeks. On Saturday she had a whole day of umpteen different doctors and nurses doing very invasive test and procedures, all of which have severely distressed her. I was on the other side of the ward and it was horrendous listening to her begging them to stop. Everytime anyone touches her - even just to adjust her pillow - she goes rigid and fights against it.

She just won't/can't settle at all, she has been severely agitated all day today. They put a catheter in (as she has not been able to walk for the past few days) which seems to be upsetting her the most and she keeps trying to tug it out. Shes disconnected the drips many times and even bit through one yesterday. I admire the fight she still has left in her but I just don't know how to help her relax ... She last went in hospital 2 years ago where they didnt watch her and she got lost in the corridors - she manages to remember that all the time and how frightened she was, goodness knows what trauma this is going to leave in her head. I want to take her home, I can't bear this. How can you leave someone you love in this situation when they are is begging you to make it stop?

 

[thompsonsom]

Hi Eden

My heart goes out to you and what you must be feeling at this difficult time. You have not gone into details as to why the doctors are testing your mum, but i would be asking them if the tests are really necessary and if so, why arent they giving your mum something to relax her. I do think sometimes that some medical professions think that just because you have alzheimers your feelings are cut off. I know they have to do tests to find out what the problem is but they can at least ensure that your mum is not getting further distressed, far better to be doped up and out of it if thats what it takes.
Let us know how you go on.

janice

 

[janey]

Dear Eden
I would ask them if there's another reason why your Mum needs a catheter (eg are they measuring her fluid intake and output?). If not, I would suggest that she be taken to the toilet in a wheelchair, or a commode brought to her bedside. My Mum had a similar experience of getting lost (during the night) in hospital. It was only thanks to the eagle eyes of a fellow patient (who also told us about this incident) that she was found downstairs in the lift before she got out of the building. After that, Dad and I insisted that we be allowed to stay with her, and we did the same thing when she was admitted again last year. We had to spend the night in a chair, but were at least able to take it in turns. I don't know if its possible for you or yours to do the same? Last time the ward sister actually thanked us for staying and admitted they wouldn't have been able to cope without our being there. As others have already said, its an utter nightmare for you and your loved one when they go into hospital, and there seems to be no prospect of things improving. The level of ignorance about dementia among hospital staff is mind-boggling (I know - I used to be a nurse). You might have to get annoying and educate them a bit, for the good of your Mum and yourself.
Thinking of you, Jane

 

[Brucie]

What was the nature of her deterioration? I'd tend to agree with the view that unless tests are absolutely vital, that it might be best not to attempt them, but there are some situations where the medical staff are trying to identify something - and for which a host of tests are needed.

For dementia patients anything out of the ordinary is scary.

It is all a balance of risk. If they don't do tests, then they may not be able to sort out something that is ailing her. If they do the tests, she may become so agitated that the agitation is worse than the origibnal complaint.

Another situation where one just can't win!

You need to play it by ear. As Janey says, assume the medical staff are as ignorant of dementia as the next person in the bus queue.

 

[eden]

Don't get me wrong...

Actually, I have no complaints about the nursing staff at all, they appear to be treating her with great gentleness and understanding.

She was taken in a) because lack of food and drink has resulted in general weakness and rapid weight loss; b) she stopped using her legs last week, cant take her own weight (she has a neuropathy disability anyway and normally walks supported with a stick plus a person) and c) completely freaks when anyone tries to move her - screams, says 'I can't" constantly and begs them to stop (took FOUR paramedics plus my dad to transfer her to an ambulance on Saturday and shes only about 8 stone).

I don't think any of the tests have been unreasonable under the circumstances. The catheter is possibly to measure urine, but mainly because of this total freaking everytime anyone tries to move her. I suspect its a new stress strategy she has developed (does it sound familiar to anyone????), but I guess we have to be sure.

Last night they did sedate her because of it all and although she had a fractious afternoon, this evening she was more relaxed. At least it wasn't so hard leaving her behind tonight.