Would appreciate anyone else's experience

[Cliff]

Would appreciate sharing anyone else's similar experience please.

For the last weeks at home my wife, Dee ate very little but her intake of very sweet things kept her going somehow.

Dee is now in a Nursing Home and seems settled and accepting the change. She smiles and recognises my face every day when I visit.

Now she is eating so little that she is weak and losing weight. The NH is involving a doctor and a nutritionist. Nutritious drinks and personal one to one coaxing at mealtimes using a toddler's spoon seem the only way forward.

I have watched her decline day by day and believe Dee has decided she has had enough.

I believe that nasal feeding - or worse - is not practiced on people with dementia these days.

If it is and my consent was asked, I feel that I should not allow it as I believe this is what Dee would want.

There seems no end to the cruelty of this disease.

 

[BeckyJan]

Hello Cliff

I feel for you if you are making the decision re 'resucitation or not'. I was asked this even when David went into respite and I did say 'no' to resuc. I know that is what David wants and I would for myself. What else can we do?

My thoughts are with you Cliff, as you see this decline in Dee's health. Keep in touch. Lots of love Jan

 

[Skye]

Dear Cliff

I'm sorry Dee is declining so quickly. I'm sure the NH will do everything in its power to get nourishment into her, and your visits will help.

It's still very early days, though, Dee hasn't been there long yet, and though she seems happy, the move is bound to have been upsetting for her.

Most people do lose weight when they first go into care, John lost 8kg in his first month at the home, and they were very worried, but he has stabilised, and hasn't lost any more.

Also, I've seen residents in John's home refuse food, sometimes for days and weeks, for no apparent reason, and then start eating again.

I'm not saying don't worry, of course you're worried. I'm just saying that things might not be as bad as you fear.

If the worst comes to the worst, I'd agree with you that a naso-gastric tube would not be a good idea, and a PEG an even worse one. It's as well to have thought things through in advance, but it will still be a hard decision for you to make, should it come to that.

I do hope Dee picks up, and I send you both my love and prayers.

Love,

 

[Grannie G]

Dear Cliff

I haven`t any experience of this very distressing situation but I was so sorry to read of it.

It could be the change of environment, it could be the different style of cooking, it could be that Dee doesn`t have access to the sweet foods she prefered or it could be that Dee has given up.

Only time will tell and My thoughts are with you, It was all going so well.

Love xx

 

[connie]

Dear Cliff, my thoughts are with you at this time.

I am inclined to your way of thinking also. Look after yourself.

 

[DeborahBlythe]

Dear Cliff, Hazel's thoughts are spot on. People CAN pick up especially if, as you say a nutritionist is involved. And it will help if you can be around at, say, one mealtime to help with the feeding. Or if not, try to find something to tempt Dee with when you are able to visit. Try not to worry too much and take one day at a time. Also, try to ensure that Dee manages to take enough fluids as these are almost more important than the food, I sometimes think. Does Dee have a favourite drink? My mum's tastes have all changed almost totally to sweet things now but she never refuses or fails to understand the offer of a cup of tea ( sweetened of course!)
Best wishes
PS, I made the mistake, at one point, of agreeing to nasal tube feeding. My mum hated the insertion of the tube and only tolerated it a few hours before pulling it out. I can't even say I am glad that we tried. A mistake on my part driven by the desire to save my mum's life at a point when I thought nothing else would work. She lives on two years after this episode and still has some quality of life, some enjoyable times, though much reduced from earlier. Never used artificial means again.

 

[CraigC]

Dear Cliff,

My mums had quite a different illness but we did get to the stage of considering PEG feeding and other posibilities, she just lost her appetite due to the type of illness (COPD) and it was painful to watch diet attribute to her decline. I asked a similar question to yours on this site and realised that it was intrusive and not the way to go. It was different as mum understood the situation and had the ultimate choice. The last two weeks she stopped eating completely and I tortured myself trying to get her to eat - the penny took a long time to drop.

HOWEVER, if there is a sudden change in appetite it could be many things and, if it was me, I'd want to be sure that the change in appetite was not related to something else - another condition. I appreciate this is difficult with dementia but there is no harm asking the doctor or nutritional specialist if this is possible.

If your instinct is telling you that Dee is letting go then I agree it would be wrong to prolong things with something as intrusive as nasal or PEG feeding. When I mentioned this to one of the staff at mum's home (it was someone close to mum) she just looked at me and said 'no no' and I realised that it was going to be for me not mum.

Such difficult decisions at difficult times and I hope my experience does not complicate things.

Take care of yourself
Craig

 

[jude1950]

Dear Cliff,

When Jim went into care he refused to eat at first .He told them he was vegetarian (Not true) then said he was diabetic (Not true) He lost a lot of weight and it was so drastic we worried about him just as you worry about Dee. Eventually he started to eat and has slowly regained the weight I think Hunger got the winning hand! He has developed a sweet tooth since having dementia particularly Liquorice allsorts often I use this as a bribe eat your dinner and you can have sweets afterwards I know it may not be the best thing to give him sweets but if it gives him pleasure so what.

Take care

Judith

 

[ginger]

Dear Jim
In the last months of my dear mothers life she ate very little and slept most of the time. Her last illness I took the decision that all the medical care she would receive was palative care - the staff that cared for her in the nursing home were wonderful. All I wanted for her was comfort love and to be free from any pain. It was a very hard decision, but it is a decision I have never regretted -my mum had suffered enough through the ravages of AD.
Take Care
Ginger

 

[Tender Face]

Dear Cliff, my heart breaks for you .... knowing what my mum has just gone through .... and I am pleased for you that a nutritionist and a doctor are involved and so you can be assured they will investigate any physical reasons for this loss of appetite .... which may well have some chance of remedy .......

I know before mum was first moved to an NH and subsequently other care the one thing she could enjoy was a bowl of custard - and if she only ever enjoyed custard it was something ....

Just a thought - I know many hospitals/ NHs etc are often reluctant to allow visitors at mealtimes (protected mealtimes and all that) .... but maybe some don't realise the benefit of a loved one visiting at precisely that time to assist (I know other TPers have had that same challenge). I discovered only this last week that mum - on a diet of mostly mashed potato and other semi-solids - was able to enjoy food if it was well seasoned - but of course doesn't have the capacity to ask the staff for extra seasoning (and low sodium diet etc is well out of the ball game of course!) ..... so my stubborn insistence that I was NOT in the way by visiting at lunchtimes etc helped get a few more calories down ......

For people with limited appetitie the idea of having meals 'three times a day' must be daunting .... small and frequent far better to tempt them - is there a fridge available to you where you can keep sweet /soft treats (mini trifles/yoghurts etc) .... or allowed to have a mini-fridge in Dee's room?

Cliff, I applaud you:

If it is and my consent was asked, I feel that I should not allow it as I believe this is what Dee would want.

This is the most heart wrenching of all isn't it? Knowing what we want for ourselves and having the courage to step outside that box and dare think what our loved ones would want for themselves ......... well done you for being so brave,

Love, Karen, x

 

[Cliff]

Thank you all for your posts.

You have given me a lot to think about and to enquire about in the coming days.

There is so much kindness and helpfulness here at TP.

Again, thank you and love to all,

 

[Bristolbelle]

Embarassment?

Just a thought but as it is so difficult for us to know how much AD sufferers can understand etc, might Dee just feel uncomfortable about eating in a group? Is she allowed food in her room? If so maybe you could use the time you visit her to take in some sugary hi-calorie foods which she might accept more easily from you. I also know that when my Dad was ill (he had cancer) and lost his appetite he found the special milkshakes a bit "gloopy", we ove4rcame this by freezing it as ice lollies and he ate a lot more like that, Maybe you could try that?
Good luck, I hope Dee improves soon

 

[heartbroken]

Hi Cliff

Edna eats chocolate most of the time if you give her a meal she will only eat veg and only a bit somedays more than others her basic diet is the chocolate and in my view if she is happy so what, her happyness is everything and her life is nearing the end so if she wants to live on chocolate then be it. I too would say no to tube feeding
my daughter (7) has food fobias, she has been everywhere to try and get her to eat but the hospital has said she is not ill, in fact it is rare she is, so not to worry.

keep up the good work

 

[Tender Face]

in my view if she is happy so what

Perfectly put, heartbroken. Sorry Cliff, but came back to this thread with another couple of thoughts ..... which heartbroken has probably summed up. I am maybe wrong trying to 'coax' mum into eating more than she perhaps wants .... I am all for trying to 'get calories in' .... and am trying to take in the 're-education' by her care team that it is not so much the eating for eating's sake which is important but mum's enjoyment of whatever she can manage .... i.e. I want to see her eat a bowl of trifle - if she just enjoys the taste of one mouthful I should be happy that she is happy ...

Sorry, late night, sleepless ramblings ......

Love, Karen, x