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My 86 yo mom with dementia lives with us. She has run of the house and can help herself to anything. We leave nutrition bars and fruit out since she likes them, and nutrition drinks are in the fridge all the time at her doctor's direction. However, unless we bring food to her, she doesn't eat. No matter how enticing the meal, she says constantly she isn't hungry. And she is cranky about it, like we are forcing her to do something inconvenient - like eating. Is this dementia-related, end of life related, depression, "drama" - or maybe a combo of everything? She takes anti anxiety meds but maybe it's time for something to increase her appetite? We're at a loss with this because she always had a great love of food.

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Well, Mama's long battle with Alzheimers is over. She passed at 11:35pm on the 5th of January. Mama was diagnosed over 8 years ago (but she had started getting paranoid long before that). My dad and I just feel hollow and waiting for the other shoe to drop. Thankfully we were able to make our peace with her awhile ago and each in our own way, so there was no unfinished business. Blessing to all of you. Linda
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Oh, I hope if this is her time she goes gently. Warm hugs to you.
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Well today mama has refused everything, even liquids. We had been feeding her with a syringe (home-made smoothies) but today she just let it run out of her mouth. No response at all....I'm thinking she is starting to pass over. Truthfully, I didn't think she would make it to the new year. My dad and I are pretty sure this is her time now. She is warm, comfortable, being given pain meds as needed. Thankfully the morphine is absorbed through her mucous membranes, so even if she cannot swallow some of the medicine is taking effect. I guess we just wait now...sigh....Linda
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Even without dementia, there comes a point in the process where eating doesn't happen. My dad's last month we could not get him to eat; I even recall singing a Jello commercial in the hopes of getting at least that into him.
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Oh, Linda, thank you! Your experiences remind me of my mom's recent hospitalization for pneumonia. We brought her into the ER because she was too weak to get up from using the toilet. In the ER the nurses asked her if she fell - to which she answered, "Yes". They didn't ask her WHEN she fell - so she was referring to a bad fall she took over a year ago that has planted itself in her memory. Then they asked ME if she hit her head when she "fell" because she was acting confused. Ummmmm, she has dementia and a fever, so, YES, she is confused! Oh, and her heart is racing. Well, her heart is racing because she is sick. It was all I could do to simply not say to them, "FOCUS here!". We knew she was sick because she had had a cough, was weak, and more confused than usual. But they kept treating her like she was cognitively fine. The kicker was the ER staff kept asking about the meds she takes - this is the hospital her PCP works from and where all of her medical records are kept. My mom is 86 with moderate dementia which should have been in her records. Geesh!
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Dementia is a tricky thing and it often stops them from feeling hunger or thirst. We did not ask mom, we would just come in with food or drink, and something for us and then we would feed her. We knew she was serious when she would clamp her mouth shut, lips pressed tightly together and glaring at us. So then we would take everything of hers away (without any reaction on our part) and continue to eat in front of her, then wait about 5-10 minutes and start over and then she would usually eat or drink something. I think the lack of any response to her behavior really helped, think of it as ignoring a child's tantrum. Remember that a person with dementia does not think or respond the way we do. Many do try to control what they can (and really who can blame them when everything is changing so much for them and they don't understand any of it). My mom used to be really stubborn! and if you asked her a question more than once she would scream at you. Mind you, that at this time she was in the moderate stage of ALZ, totally deaf in one ear, very hard of hearing in the other (and always losing her hearing aid or refusing it - physically sometimes). So we ignored her bad behavior...not that easy to do but very necessary. But when she was at her doctors all smiles and nods (of course she heard/understood next to nothing that was being told/asked of her) so there was manipulation going on....my dad and I always went with her into the appointment as well, me mostly because my dad doesn't hear well either and won't ask people to repeat themselves. What really would astound me is the number of doctors and nurses who have no/nada/zero understanding of Alzheimer's! We would tell them beforehand and not in front of Mama that she had moderate Alz, was for the most part deaf and could not reliably answer questions, and yet we have had those same people sit and question mama about her health etc, high level questions at that and become annoyed at us for helping with the answers! So let's see, you just asked her what are your symptoms and how long have you had them? She cannot hear, english is her second language and she is rapidly losing that and going back to her original language (German) and she has moderate to severe ALZ with no sense of time or reasoning ability and you don't want me to help with the answer...Okay...we won't be back....How can they expect to get a 'real' answer? Woops sorry starting to vent....Hugs to all, Linda
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Good for you, Rascal! I hope this is a step in the right direction. Don't expect an overnight transformation, but stick with it!
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So we now have a plan to get her to a senior center three days a week (at least at first) while we are at work and our son is back at school. There is nursing staff there and activities if she wants to join in. She doesn't want to go, but we have no choice at this point. My hope is her level of engagement and contentment will increase if she is with others her age who share similar life experiences.

She continues to say she is not hungry before every meal, regardless of the menu, but we have come to the conclusion she just says that, like it's a habit now. We ask if she wants this snack or that, and she declines every time. She cannot remember what she has had to eat or drink but will insist she has had a protein drink even when we know that is not the case (the drink is sitting on the counter). I do know she resents very much having food and drink brought to her unless SHE decides she wants it - which never happens. My dad had dementia as well but his behavior was very different. He was usually easy going and compliant. My mom has been ubercontrolling all of her life, and I can see that trait is continuing (at least about sustenance) while she has been living with us.

I do wonder if she would be like this if she was in a different living arrangement - where she would probably be on her best behavior, like she does whenever we are with others who don't know her very well. Sigh.....
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Rascal, no elder that I've ever known jumps up and says SEND ME TO ASSISTED LIVING! It's an unknown thing that warrants exploration. Go for visits, lunches. She may like what she sees!
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I don't ask any more, I just come in with cups and straws, put one in her hand and sip and talk. (If I ask she'll say she's not thirsty.) People are more motivated to eat and drink if someone else is eating in their presence. Check the side effects of meds, one my mother was on made everything taste like metal or sand, taking the joy out of eating. An Ayurvedic method is to give pudding or ice cream or a little light sweet, 1/2 hour before a meal to "light the fires of digestion." Even if you have to be at work, when you come home, have a variety of drinks to give while you socialize with her -- give in tiny tea cups or shot glasses: protein drinks, smoothies, bouillon, blended soups, fizzy juice, fresh vegetable juices...herbal tea. Some herbs and spices stimulate appetite, like cinnamon. Homeopathy can alleviate imbalances which cause the lack of awareness of being dehydrated (when they don't know they are thirsty). At their age the emotional symptom-picture is to be strongly considered when choosing the remedy. For example, the "crankiness" could be treated with Bryonia (the "grumpy bear" remedy. Or with Pulsatilla if it is a whiney "poor me" crankiness.
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Our mom said the same thing, didn't want to be around those old people. Son of a gun, she met people from high school at the ALF. Then it was OK. Take her on tours, go for the free lunch or an open event. Most facilities have an open party of some sort once a month.
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And I have wondered if my mom is lonelier than she lets on. I have asked many times if she would like to live somewhere where others her age live, and each time she said she didn't want to live in that type of housing.
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I have noticed that since Mom moved to assisted living, she has gained weight. Maybe it's the collective company of other peers that enhances her appetite? Meals are a social event, for sure.
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Yes, I agree, and have an appt with her doctor this week. We do have a son home for the next couple of months (in between college semesters), but I want someone who will socialize with her and really make sure she is OK. The funny thing is when she is at the doctor's office, she is "on", and, unless you knew her, you would never suspect she has cognitive and other issues.

I plan on asking for referrals for someone to come into our home for the late morning hours (lunch!) until 3 or 4PM, since there are no senior day care program in or near our rural community.
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You say "unless we bring food to her, she doesn't eat." Seems simple enough. Bring food to her. Ah ... you both work all day.

Persons with dementia really cannot live alone, and most of them reach a point where they cannot spend a day alone. (And often, not even an hour.) It sounds like your mom is at that point.

I think it is time for
1) a swallowing test (you don't think it is a problem, but ...)
2) a medical exam and evaluation of all her meds, if that has not happened recently
3) in-home care for her while you are at work (someone to keep her company and bring her food and fuss over her, perhaps 11 to 3 or 4)
4) as an alternative to in-home care, consider an adult day-care program for her while you work. She'd have interactions with other adults and be given lunch, maybe breakfast, and be offered a beverage often.
5) begin looking at care centers so you'll be ready when she needs more than in-home care

She may not recognize her own hunger/thirst signals. She may forget to eat. (Yes, really.) She may have problems swallowing or chewing. There could be lots of reasons, but whatever the reasons she is now at a point where she cannot stay by herself all day. That is the first thing to fix, in my opinion.
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Check to see that her teeth and gums are in good shape for someone her age. A painful tooth could make someone not want to eat. Or maybe stomach gets upset after she eats. Since she doesn't like being fussed over, maybe she just doesn't to burden you with these things. Will she answer you if you bring up the subject?
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Thank you for your responses and helpful suggestions. I don't believe swallowing is an issue - yet. Most of the food we serve her is soft, and what isn't is finely cut up. However, I am beginning to think she can't recognize hunger or thirst anymore. If we let her, she would go all day with no water or food. She tells me, "You don't have to wait on me. I can get things myself." To which I respond," I believe you, Mom. But you don't get things, so I need to, to make sure you are getting your xyz."

She does like being fussed over, but we simply don't have time, unfortunately, since we both work full time.

If we can't resolve these issues, I'm afraid I am going to have to look into nursing care at a local home which makes me sad.
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I understand your concern. My mom has lost 40 lbs. this year. She has refused to wear her dentures since she got them 13 yrs. ago and is now to tired/weak to chew. So we give her severely cut up and mashed foods. The meds she was on I also found out had a side affect of weight loss. She is now off of Paxil and on Mirtazapine which has weight gain as a side effect. What the doctors have NOT told me over the years could fill a library, but the damage is done and it may be too late now. This year has been a nightmare, but suffice to say her drastic decline started when I hired a caregiver agency to dispense her meds and give her showers. God will judge.
I have been told that my mom may have "given up" & "is just too tired" at 94. She has also been very pleasant lately which is totally out of character for her. She now needs to be hand fed and the Residential Adult Home she lives at now encourage her and care for her exceptionally well but she is still not taking in enough food to sustain her and her diabetic meds have been all but removed.
Bottom line: If the difficulty is chewing then mash/shred/grid the food for her. Dementia is complicated and she may not know her own pangs of hunger or remember to eat. We cannot force feed but can continue to encourage and offer the favorites often. Some people just enjoy being fussed over while others do not. As has been noted, swallowing is also a huge issue. You know your mother better than anyone but Dementia changes an individual's character altogether. We do what we can while we can.
May God grant us peace and favor in our caregiving experience, that it not debilitate or destroy us.
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Has she been seen by a speech pathologist to assess her swallowing? Dementia patients are not able to analyze and tell you accurately what is wrong. My father in law, post stroke, simply said, I can't eat. Everyone brought tantalizing food. Finally, a speech path evaluated him and saw that his swallow reflex was severely impaired.
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