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I need help making a decision about supplementing food intake in late stage 6 DH

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My DH is in late stage 6 dementia. He is almost non-verbal, double incontinent, in a wheelchair and unable to do anything for himself without assistance. He has been moved from a MC facility to skilled nursing because he requires so much help. He has to be fed, but he eats well and taps his finger when he is ready for another bite. In spite of all of this, he has been steadily losing weight, and has lost around 30 lbs. in the last three months. The doctor wants him to be given Ensure twice a day to get his weight back up. I don't want this done. What are we saving him for? He is only 79, but has lost all of his muscle tone, and is so frail. I will not do feeding tubes, no intubation, DRN, and no more hospital trips. What would you do? I promised him that there would be no extraordinary measures taken to save his life, but am I right to just say no and let him continue to lose weight? Thank you all so much. I thought I knew what to do, but now I am second guessing myself. This is SO HARD!!!!

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  • JulietteBee
    JulietteBee Member Posts: 129
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    @Palmetto Peg

    I am so sorry you have to now decide what is best for your hubby. I am not trying to be dismissive when I tell you that you will know what you need to do. Trust your gut! 🫂

    Prior to my dad's death, he had not stated his wishes. On the morning of his death, he had slipped into a coma. My mom came into his room and clearly voiced that she did not want them to do anything else for him.

  • harshedbuzz
    harshedbuzz Member Posts: 5,434
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    @Palmetto Peg

    I am sorry you have reached this place with your DH. This kind of weight loss is not unusual in the later stages of dementia and indicate he may have moved onto stage 7 rather than 6.

    My dad lost a tremendous amount of weight in his final months; over 20 lbs. in his final 6 weeks to the point that whole body shape shifted and his gender wasn't obvious. He probably lost close to 50 lbs. that last year. This was despite us plying him with treats daily. Ice cream and cookies, milk shakes, fast food nuggets and fries, donuts— anything palatable that he could self-feed and enjoy. I was told by his geriatric specialist that his digestive system was no longer absorbing nutrients/calories from his food.

    My aunt also lost a great deal of weight in the final year of her life. Like your DH, she needed to be hand fed. Her guardian-sister visited daily at lunch (her best time of day) to make sure auntie could take as much time as she needed to complete a full meal at least once daily. Auntie was in a quality SNF, but feeding was allotted 30 minutes on the schedule and she ate slowly. Are you feeding your DH or is staff doing that?

    To your question, IMO, Ensure is not an extraordinary measure. It's a sweet drink that he may enjoy. It may not help him gain back lost weight or even stabilize him where he is now, but it is a common strategy to maintain weight. There are reasons beyond extending life for attempting to keep weight on a PWD. Sometimes when a person is wasting, they will have pain from nerves which are no longer cushioned against organs and bones. Bedsores can be an especial risk to people with wasting.

    HB

  • H1235
    H1235 Member Posts: 1,021
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    There is a thread in the caring for a spouse titled “tests and medication” that discusses the moral dilemma of when to let go. You may find it interesting. So sorry you are faced with this gut wrenching decision. Don’t let the doctor make you feel guilty. Do what you think your DH would want.

  • Quilting brings calm
    Quilting brings calm Member Posts: 2,866
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    I don’t think giving him Ensure is a life saving or extending measure. It’s not going to fix whatever is causing him to lose weight - especially since he is eating well. If the reason for him to be losing weight is ‘not absorbing the nutrients and calories’ from food that he is eating, he’s not going to absorb those from Ensure either. All it will really do is give him something different to taste.

    Since he is eating well, there is most likely another reason he is losing weight. It could be a disease or it could just be end of life time. My thought is that the weight loss will continue without some invasive medical intervention well beyond drinking Ensure.

    My step-father started losing weight about six months before he died. He saw his PCP about six weeks before he died. Complained of a pain in his side but refused an x-ray. He went on hospice three weeks later. He drank Ensure for another few days and then pretty much quit eating. Our guess is that either his thyroid cancer nodules in his lungs started growing, or some other cancer happened. No idea because he went on hospice a week before his scheduled annual CT scan with his oncologist to check for that.

  • cdgbdr
    cdgbdr Member Posts: 198
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    At this point, I would not see the supplement as extraordinary. If he enjoys it, he may want to drink it. Is he receiving hospice care? If not, perhaps consider that type of care. I am sorry that you and your husband are going through this.

  • Palmetto Peg
    Palmetto Peg Member Posts: 269
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    Thank you all so much! Your advice has helped me think more clearly, and I am going to go with the recommendation for the Ensure. Since he still eats, he may enjoy a different, sweet taste. He is hand fed either by me, his companion, or one of the aides, and he does seem to like to eat. You are right - if his digestive system isn't taking nutrients from regular food, it isn't going to take it from Ensure, either. I'm so relieved - so many decisions have to be made, but now this is one I can make with a clear conscience! He probably is more likely in Stage 7, and I will take a closer look at what that means. Blessings to all of you!

  • SDianeL
    SDianeL Member Posts: 1,834
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    praying for you and your DH. 🙏💜

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more