22% loss in body weight over six months.....

[nelliewops]

Hi everyone,

Having just got through my dad's passing away after fighting Vascular Dementia last month, we are now faced with a dilemma over my mum's care and in particular her nutritional intake.

During a routine checklist for the DST she was discovered to have lost a staggering 22% of her body weight over the past six months. As we live a fair distance (90 minutes drive) from the nursing home, we only get to visit fortnightly and were aware she had got extremely thin, and that staff were having issues with getting her to eat, but she was always slender & somewhat delicate - having a 22" waist for much of her life - and has been a picky eater for as long as I can remember, however we weren't aware that things had got so serious.

The care plan we agreed with the nursing home said that we wanted minimal intervention for both my parents and as long ago as last year staff said she was too frail to survive CPR as her ribs would be in danger of being broken. When my dad was discharged from hospital back to the nursing home in April after his last stroke we discussed IV feeding, but all concerned (us, his GP and hospital/nursing home staff) agreed it was better not to go down that route.

However, whilst mum is in the later stages of Alzheimer's (unlike my dad who had VD and exhibited extremely challenging behaviour as well as suffering several strokes that left him bed-ridden), she is still able to be dressed and led (with the aid of staff and a frame) to a chair in the lounge and on the face of it is nowhere near the end. She is doubly incontinent though and has severe cognitive issues.

When we visit we always try to tempt her with soft, mousse-like treats that are easier to swallow, but she spits everything out and staff say she does the same at many meal times, with them often resorting to offering her one alternative after another to no avail.

Up till now no-one at the home has suggested alternative methods of getting her food and fluid intake up, although they have put her on a supplement that she also refuses to take

Regardless of whether the DST (set for 9th July) concludes she is eligible for CHC, she appears to be in danger of just fading away......although as cruel as that sounds, DH and I think that's what she herself would prefer were she in possession of her faculties still, especially if she fully understood that her beloved husband of 61 years has passed away

So what do we do......and if she is awarded CHC funding will the decision be taken out of our hands as she will no longer be self funding? I hate the idea of her having to be PEG-fed, but in such cases of extreme weight loss is that the only real option?

Help please.....x

 

[Lottie134]

Hi Nelliwops
I could positively be writing this about MIL. FIL passed away last Nov & since then MIL has seemed to eat less & less. The NH are getting concerned about her as she also seems to be fading away. She has been diabetic for years & has always had excellent control but now she has lost all awareness that she has the disease & tends to only fancy sweet things. Her GP has told the NH to let her eat whatever she fancying & when we go to visit we arrive ladened with crisps, trifles, scones etc all the things she's taken to eating in order to tempt her. No one as yet has mentioned any supplements but that may come further down the line. We have discussed with the GP a DNR & both OH & myself would definately fight against PEG feeding, she wouldn't tolerate it.
Sorry this isn't much help for you but I just wanted to kept you know you are not alone.

 

[garnuft]

I don't think any doctor would suggest peg feeding.

Though I must confess, when my mother was in what turned out to be the last weeks of her life, I silently wished they would suggest it...where there's life there's hope...even if it goes in the face of common sense, emotions will seep out, even if it's just a thought in your own mind, never vocalised.

I respected the Consultant who said to me, when I said Mam was dying of hunger and thirst...'Yes, you are right but age and illness is part of it too, if we put your Mam on an IV for fluid at some stage we will have to make a decision to withdraw that treatment'.

It made me think.

It's a dreadful time of questions and worries.

Strength and peace to you and Mum. x

 

[cragmaid]

Your Mum - my Mum...twins.

The only thing Mum eats readily is two quarters of a bacon sandwich...the rest she just picks at, a bite here - a spoonful there. She has lost over 4 stones in 2 years.

She is 87,blind, very frail, rollater or wheelchair is the only way she can move. If she drinks one full beaker of fluid per day, that'll be all. intermittant double incontinence ( sometimes manages the loo for a morning sit-down!!)

We have a DNR, we have an ECHP ( emergency care health plan...only trips to hospital for a trauma ) I have said no to peg feeding. I believe there is a time when enough is enough. I've applied for CHC but I doubt she'll get it, but they would not persue the peg path as I also have LPA and an understanding GP.

 

[nelliewops]

Thanks Lottie, Garnuft & Cragmaid and sorry to hear I'm not the only one with a mum in this situation

Cragmaid - my mum was flagged up for the DST after *scoring* 2 x A, 1 x B and 7 x C on the preliminary screening (checklist) they do annually in her area.

I personally don't think she'll get it, but they do - quite rightly - seem very concerned about her lack of nutritional intake and I read somewhere that someone who has lost more than 10% of their body weight over a three to six month period (and my mum has lost 22% ) should be categorised as *high* in the relevant domain. She also scored 4 on the MUST test where a score of 2+ is considered high risk......

We also didn't think my dad would be eligible - although it did come rather too late for him - but he did, which leads me to think it's still a postcode lottery when you hear such disparate cases of those who have and haven't been successful.

I wish you well with it