Dimentia and Food

[Brotherman]

Hello, I have a serious problem. My step-father is diagnosed with the final stage of dementia. He lost his ability to swallow and they said he will aspirate if given anything by mouth. He has been in the hospital for the last two weeks. When he went in he had some infection plus pneumonia. They successfully treated those but now he is lying in the hospital for two weeks without food, getting only some saline solution. The doctors said his dementia has advanced beyond the stage where he recognizes hunger and a feeding tube was discussed and considered in a meeting but the doctors claim it will not do much and considering his age and stage of dementia it would not make much difference. My problem is that he cant talk but I am troubled if he is not suffering from hunger. Last night he was sleeping and the nurse gave him and injection and he cried out. He can't talk but responds to stimuli. If you flash your hand across his eyes his eyelids closed spontaneously. When you hold his hand he knows and he looks at you as if he wants to say something. When you sing his favorite hymns you know he hears you. He was to go to be discharged to a hospice but but my mother prefers him home, so he will be discharged back to home tomorrow where he will be getting home care plus hospice facilities and help.
My question is,"Is it likely that he is starving to death? What is the possibility that he knows and feels hunger? Is it a big risk if we try to give him small amounts of liquid foods by mouth? We just can't sit there and have him starve to death? Although he will be still getting the saline treatment - that is not food. This is a big concern for us. I'd like some feedback from the community and if possible some professional advice too. Thank you!

 

[lunar]

Hello
Firstly let me say how sorry I am for your situation. It must be so difficult for you and your family at the moment. My advice would be that if the hospital tell you that your step-father is at risk of aspiration if he drinks or eats then I would listen to the their advice. There will probably have been a swallow assessment that led them to that conclusion. I am a nurse and I have cared for many people in this stage of their illness. I have nursed people who had the ability to swallow but genuinely did not want to eat as they appeared not to be hungry. The trouble is we attribute caring with providing warmth, comfort and nourishment and when we cant provide one of those things it distresses us. What I would suggest is that you keep you fathers lips moist with some lip salve or some special oral hygiene sponges (only if the Dr's say this is okay). You could also try some hand cream for his feet and hands as this often reassures and comforts people. But lastly, don't ever think that you are not doing anything by just being there. Stay strong x

 

[Pigeon11]

Hello Brotherman. I'm really sorry to hear about this. It must be very hard for you.

I'm not a medical professional but my father has quite serious swallowing problems and so I have sought advice from his GP and done some reading on the subject. I don't profess to be an expert by any means but I understand that as people reach this stage in their illness there are some natural chemical changes that stop the feelings of hunger and thirst.

When my Aunt died recently she stopped eating shortly before and we had to give her water on a moistened sponge and use special mouth-care swabs to moisten her lips and tongue.

I hope you get the support you need to get you through this difficult time. xx

 

[zeeeb]

I guess the decision needs to be made whether or not to tube feed him. It sounds like he'll aspirate from any food given by mouth, so the only other option is to tube feed.

So you need to decide to try and prolong his life with artificial feeding or not.

That all comes down to the familys personal preferences. Many people these days put on their medical directives that they don't want to be kept alive by artificial means including tube feeding. You, as a family need to decide whether you want to allow his pain and sufferring to end, or whether to fight on.

He is no doubt suffering from many discomforts at this stage, and hunger may or may not be one of the discomforts, but is hunger worse than the other types of suffering he will go through if kept alive artificially? It's a question that there is no right or wrong answer to, so long as you (as a family) believe you are doing the right thing for his interests, and keep in mind what you think he would have wanted if he had the choice to make his own decisions. Some people prefer to fight to the bitter end, some people prefer to allow someone to slip away to end the battle.

 

[meme]

he is coming home with hospice facilities...that will take care of any pain and he will be with his loved ones and kept comfortable...that is the very best you can do for him, and I would see the not eating as a natural progression/choice of his..

 

[zigandzag]

Hi Brotherman - I am sorry you are here.

My mom is at the same stage as your step father. She too is in hospital, has difficult swallowing and is aspirating - she got over one dose of pneumonia, but its only a matter of time before the next bout strikes.

Like many others I did not consider peg feeding to be appropriate (neither did the doctors). She is now being "fed at risk" and we agreed with that decision. My mom is extremely aggressive and agitated so a drip is out of the question for her - the last one was ripped out in minutes.

Like your step father she doesn't eat or drink much these days - but all of her drinks are thickened and she is only given pureed or soft food. I am sure the hospice people will able to give you some help and advice.

Sending you prayers at this dreadful time. x

 

[Resigned]

Hi brotherman

I am sorry that you have got to this point with your step-father. My mother is in the same position, having broken her hip a couple of weeks ago, she is still in hospital as she has stopped eating. She had trouble swallowing and was put on a soft diet with thickened drinks. My siblings and I have agreed we do not want her force-fed so whilst she is encouraged to eat and drink, she will not be forced if she doesn't want to eat.

Our feeling is that this may be the last thing she has any control over and has decided enough is enough. I have read extensively on this subject and it seems that it is in fact starvation which is hard to accept. Many people on TP have been through this and written about it.

You will need to decide as a family whether you want any intervention for your step-father on this and what possible benefit it would be to him at his stage of dementia. Its a very hard decision to make but it has to be whatever is best for him, in the end.

I feel for you and all of us who are at this stage in the journey. Keep posting and let us know how your step-father is doing.

R