Losing Weight, Looking for Advice

anhhht · January 7

Hi there - New Here
This is my first post so forgive me if there are any formatting errors and length. I am one of the caregivers for my great aunt, late 70s, who I believe has end middle to late stage. We placed her in MC back in August because she lived alone and it was just becoming too much for her. Since entering the home, she has rapidly declined and we seem to be running into issues. She would go to the activities, talk to people, eat the meals, but now we are basically bed ridden and begging her to eat. Her weight on arrival was 116, currently at 85.6. If someone is there to eat with her, she will slowly pick through her food, but even then, it’s a battle. Some days she’ll eat sweets, and others, nothing. She sleeps through 75% of meal times and just nibbles the rest. I am at a loss on what to do or how to get to eat. She is still able to walk to the restroom, dress herself when needed, and talk to us just fine. However, I am terrified that her nutrition will inevitably be the downfall of her. Today while visiting, I ended up having to go ask the cafeteria for her lunch because they just point blank forgot hers. My gut is telling me this isn’t the first time this has happened, only the first time someone else has been around to catch it. Now we’re on high alert, but it still doesn’t change the pressing issue that we need her to eat and gain weight.

I appreciate any advice anyone has.

Thanks!

MN Chickadee · January 7

Dementia in later stages begins to affect all bodily processes, including digestion. Swallowing becomes more difficult, appetite decreases, and the body seems to get less nutrients out of the food they do consume. It's hard to watch but pretty normal in the trajectory. A natural process usually. I would focus on foods she likes. Does not need to be a balanced diet at this point, just whatever is appealing and that she can handle. You might try Ensure protein shakes to boost her calories a little, or ice cream shakes or whatever she accepts. Expecting her to know what to do with a sandwich, or large piece of meat that needs to be cut etc won't work. She needs assistance with eating. You might ask for a care conference with the facility nursing staff to look at how her needs have changed around eating and see if you can get something in her care plan for it. Also might consider a hospice consult. The weight loss alone would qualify her, and they can help make her remaining days as comfortable as possible and they are an added layer of services, visits, and resources for her and the rest of the family.

fesk · January 7

In addition to the advice above, are you aware of any medication changes that have occurred since she entered the MC? If a review of her medicine has not been done recently, I would ask the MC what she is being given.

Arrowhead · January 8

My wife is in stage 7 and, although she needs to be fed, she still has a very healthy appetite. She's always ready to eat and will eat everything that is given to her. She's also bedridden, yet she still lost a lot of weight. From what I've read and what I've experienced, giving your aunt supplements may not reverse the process. For many patients it's just part of the journey.

Quilting brings calm · January 9

It’s possible that her weight loss is due to a physical illness that hasn’t been identified. One that you may not be able to have treated because she wouldn’t understand or tolerate the treatment. Or because, quite frankly, you don’t want to to be treated just so she can continue to deteriorate in dementia. Call hospice - they have different eligibility rules for dementia patients, based on difficulties in doing ADLs, weight loss etc. Hospice will be extra sets of eyes on her supervising her care. Paid for by Medicare

anhhht · January 9

Thank you all for the insight and tips. We did end up calling hospice and getting things set up with them. We are trying to navigate this weird time and learn what is best for her & what we can do to best guide her. She does still eat certain things so at this time, pb&j and grilled cheese is what we’ll do!

anhhht · January 9

https://alzconnected.org/discussion/comment/262907#Comment_262907

They had placed her on three anti-depressants, so we requested she be taken off of those. Our family is all for medication when there is a place for it, however, we genuinely feel like it was putting her in a more sedative state than she already naturally is. Hospice was super understanding of our wishes and while there might be a time that we need to make her comfortable, her natural sleep schedule was just fine unmediated.

fesk · January 9

https://alzconnected.org/discussion/comment/263121#Comment_263121

That definitely could be impacting a number of things. Hopefully, you will find the right balance for her. Best of luck. Keep us posted.

persevere · January 10

I am experiencing a similar issue with my DW. She is I would say in stage 6-7. She has lost close to 30 lbs over the last year or so and is averaging about a 1lb loss every week or so. It's very hard to get her interested in food. The morning seems to be the best time. I have to feed her because she can't do it herself. It's frustrating and it's scary. I hear her stomach growling in bed. I have hospice on board. Because of her agitation she burns more calories than she takes in. I am at a loss. Every time you think you've experienced something unfathomable there is something else lurking.

anhhht · January 10

https://alzconnected.org/discussion/comment/263141#Comment_263141

I’m so sorry to hear that. Out of all the battles, the eating has been the biggest struggle for us. Mostly because I know how quickly things can change if we don’t keep ahead of it. Please get us updated, I’ll be thinking of your situation. These forums have been a bit of peace for me, a sense of community that I haven’t found anywhere else.

Losing Weight, Looking for Advice

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