My father (80), who has multiple disabilities as a result of previous brain
surgery, is in the advanced stages of Alzheimer's. On a good day, his
reality and ours overlap by about 5%. He's started forgetting who my mother
is although that's only an occasional happening at present.
My father is heavily dependant on my mother for nearly everything. Whilst
he could feed himself and drink, he needed constant attention and
intermittent help without which he would starve and dehydrate. His walking
was very poor but that didn't stop him trying to rise many times at night to
"go to work". He could use a toilet unaided most of the time but not
always.
My mother (and the rest of the family) have always been keen that he should
be cared for at home if at all possible, with as much outside help as
required (money fortunately isn't a problem).
My mother was coping (just) until last week when he fell and broke his hip.
He's had it pinned and is currently languishing on an acute orthopaedic ward
when the standard of nursing care for someone with his dependencies is
lamentable. There seems to be no appreciation of his pre-existing problems.
Drinks are left to go cold and undrunk as no-one is free to help him drink.
Every day when my mother visits him he's dehydrated and thirsty. In
addition his confusion and restlessness have worsened and yet they put him
in a bed where he can't be seen from the nurses station. My mother found
him stark naked the other day on the ward, no one having checked on him for
some time. (His restlessness causes to pull at his clothes). His oral
hygiene is terrible and it doesn't look like he's received any oral care at
all. My mother feels guilty for not preventing the accident (which was
always going to happen sooner or later as he falls frequently) and as an
ex-nurse, is finding this terribly terribly stressful.
Local rules about lifting patients (basically, nurses aren't allowed to lift
a patient manually in any way, not even if they've slumped down the bed)
means that they seem to almost employing a complete "no touch" technique.
The less touching and involvement the better would seem to be the rule of
the day.
All being well, he'll be coming home on Monday with support from the local
social services. We know that the time will come (probably sooner rather
than later) that care at home may not be possible but our experiences of
modern nursing have not been good to say the least. He would, IMO, be
better off dead than going to a hospital to die through neglect.
I know he's a difficult nursing problem but the level of neglect seems
inexcusable. I sincerely hope this is not the level of care that one gets
in most hospitals in the UK these days. If he has to go back into hospital,
I can only pray that he develops an overwhelming chest infection quickly.
Sorry for going on so long but it's been a tough week.
Evelyn Ruut - 18 Mar 2005 16:18 GMT
> My father (80), who has multiple disabilities as a result of previous
> brain
[quoted text clipped - 58 lines]
>
> Sorry for going on so long but it's been a tough week.
Hi Tim,
I am not in the UK, but I sympathize deeply with the situation you have
outlined for us. Perhaps one of our UK list members will reply later, but
in the meantime, I just wanted to let you know I understand and hope the
situation improves for you all.

Signature
Regards,
Evelyn
(to reply to me personally, remove 'sox")
J - 18 Mar 2005 16:23 GMT
No need to apologize! That's what we're here for. Sometimes is just
helps to get things off your chest.....
Florence A - 18 Mar 2005 17:46 GMT
Tim--
I am curious---is it against some hospital or gov. rule in the UK for
the family to bring in & pay for outside help to care for their LO.
while hospitalized.?
I take care of my AD husband who seems to be at about the same stage as
your DAD ...Still continent makes it to toilet on unsteady legs..I've
emptied all drawers in his room so he can't get up in the night to get
dressed for anything his
reality fancies...Knows I"m someone in his life "the nice lady"-- who
keeps him "hydrated" & fed...
Meanwhile, I've finally admitted, its too much for me...It's been one of
my toughest decisions, cried lots in the night...
My children, their spouses, & my brother (his best friend) all finally
spoke out---
knowing I don't bow to advice gracefully,
wondering when I'd say "enough already"
Please give your mother this permission..but give it gracefully, One
can't make these statements of absolutely no NH care until you have
walked the path. & how much further the road might go on.
I am trying to say this as gently & kindly as I can---or am I absolving
myself?
Florence
.
Gwen Love - 18 Mar 2005 22:50 GMT
Florence, you have no need to absolve yourself. You are just facing reality
and dealing with it the best way you can.
Gwen
> Tim--
> I am curious---is it against some hospital or gov. rule in the UK for
[quoted text clipped - 27 lines]
> Florence
> .
T - 18 Mar 2005 23:21 GMT
> Tim--
> I am curious---is it against some hospital or gov. rule in the UK for
[quoted text clipped - 10 lines]
> Meanwhile, I've finally admitted, its too much for me...It's been one
> of my toughest decisions, cried lots in the night...
Florence, it sounds like you're just a bit farther down the road that many
carers have to take and my spouting off about nursing care was certainly not
what you needed to hear just now when you probably still agonising about
your decision.
Every AD sufferer is different and you can only do what you can do. Making
that decision must be one of the hardest things anyone has to do. I'm sure
that there is good care out there and I'm sure you didn't take the decision
lightly.
> Please give your mother this permission..but give it gracefully, One
> can't make these statements of absolutely no NH care until you have
> walked the path. & how much further the road might go on.
My mother already knows that'll we'll stand by any decision that she has to
make, she's the one bearing the greatest burden. I'm sure your children
don't think that you've failed in any way, nor should you.
I'm not a religious person but right now I'm raging against whatever/whoever
caused AD to exist. I'm sorry you got caught in the crossfire.
Take care.
Dennis P. Harris - 19 Mar 2005 04:22 GMT
> My mother feels guilty for not preventing the accident (which was
> always going to happen sooner or later as he falls frequently) and as an
> ex-nurse, is finding this terribly terribly stressful.
tell your mother that SHE IS NOT ALLOWED TO FEEL GUILTY. there
is probably NO WAY should could have prevented an eventual
accident. she is NOT reponsible for what his previous injuries
or AD have done to him, so she should never feel guilty! if
she's having a lot of problems with guilty feelings for not being
able to cope, try to get her into counseling or into a
caregiver's support group.
Dennis P. Harris - 19 Mar 2005 04:26 GMT
> Sorry for going on so long but it's been a tough week.
have you filed a complaint with the proper authorities?
contacted your MP about the substandard care or failure to plan
for care of demented patients?
if i were you, i'd start looking NOW for the facility you already
need, even if you're not ready to send him there yet. best to
get him on the waiting list for facility you would prefer than to
have to try to place him in a crisis situation.
it sounds like caring for him may already be beyond your mother's
capability. if it is, it may be time for a family meeting to
discuss it. she needs to have more time for herself --- if she
gets ill, she won't be able to do him any good.
Ronny TX - 19 Mar 2005 09:50 GMT
Tim,I'm so sorry to hear your Dad fell and broke his hip and about the
not so good care he's been getting after that! :-(
BTW,always remember that this is a good place to let off steam,vent or
whatever a person calls it. The way I see it,that's one big reason this
place is here! :-)