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Mom has has memory loss for several years. It's not Alzheimers so she knows who she is but she doesn't remember how to do much. She got sick in September and was in the hospital twice with uti. The first time the doctors didn't know if she would make it through the night. When she recovered she went to a NH for rehab. We moved them out of their apartment before she came home from the NH. She was in the hospital and nursing home again until December 1, 2011. She was refusing to eat most of her food from September until right before Christmas. Her regular Dr said if it was the dementia that if she was reminded to eat that she would respond by eating. He said because she was refusing to eat (and she lost 50+ lbs from Sept to Dec 1) that she was letting go. He suggested that I ask for the Dr on her case in the NH to make a referral for hospice eval, she was admitted to hospice immediately based on the diagnosis of debility, meaning she wasn't able to care for herself and especially get out of bed without help.
She started eating again but mostly deserts about the end of Dec. She has still been picky but I asked her once a while ago if she was enjoying her dinner, 2 hours after she started eating and she shyly shook her head no. I told her she didn't have to eat it and she said "I don't?" I have been telling her regularly since then as I give her her meal that she doesn't have to eat all of it. I try to give her a small portion but not too small because she won't ask for more when she's done. Afterwards she almost always lights up and says yes to desert. I always have many choices for her since she gets bored easily. She isn't demanding and she has a hard time expressing herself unless she has choices offered to her. She loves desert.
Monday she was up in the wheelchair for a few hours. Hospice ordered a lift that allowed me to get her up in the wheelchair without help. We've been painting a birdhouse and we finished it that day. I asked if she was tired and she said no. She wanted to stay up and I had someone coming over to show me something. She ended up sitting watching us and I thought she was feeling excluded but she didn't say anything. I told my friends I need to end our meeting and take care of mom and when they left she wanted to go to bed and didn't want desert. She seemed quieter than normal, not responding like usual to joking. She had wet while in the wheelchair and when I got her back to bed I changed her and she wanted to go to bed earlier than usual.
Yesterday she started refusing food and desert again. Today she ate breakfast and lunch okay but at dinner she didn't eat well and refused desert.
I don't know if this is just momentary or if she is letting go. I guess I panic. I want to know I am doing all I can to help her enjoy the time she has. I don't want her to think I don't want to care for her. She has always been the one to take care of everyone else, without complaint. It's her turn to be cared for. I don't have the trauma that so many others have told about here on this site. Mom is a dream to care for.
I don't always know what to do to help her enjoy life since she isn't able to do most anything she used to do. I tried to have her rip out a seem on a blouse I want to alter today and she couldn't remember she wasn't sewing. She kept trying to go somewhere and sew the blouse. Mom and I used to sew together when my kids were small. Now she plays with her sheet and comforter as if she's sewing. I go along with it mostly but sometimes I need to move them to do something like getting her ready for bed.
I know I've been rambling. I don't even have a question. I'm just not sure what to expect. It's probably nothing she'll probably be back to normal soon. We'll see soon I guess.

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Hello all; I am very new to this. I have been reading everyone's stories, and I am in the same boat. My difference is that my 83 yr. old mother-in-law who has TEN ADULT CHILDREN (she lives with me and my sister-in law). We coordinate between her and I for my MIL(mother-in-law for short) to stay with me for 2 weeks at a time. SHE SPEAKS NO ENGLISH only Spanish, and I am not of Spanish decent, but I learned it a long time ago to be able to communicate with her. She is in Stage 6 of Dementia that runs in her side of the family. My hubby is the youngest of 10, and is one of the 10 most sweet and loving to her. Unfortunately he works in his office and I work from home in mine. We are lucky and have a caretaker for her that speak fluent Spanish and is from the same town as my MIL, but my MIL is on a mission to get ride of her. In her mind she IS FINE and does not want the help. She does not know what she wants, and is not capable of making a decisions on her own. She is not able to bath properly, or be left alone. I pray to GOD everyday to give me the strength and patience for her condition, but I will not lie to you IT IS SO HARD. Today is a very bad day for her. It is my turn to have her and my sister-in -law is visiting her family away, and is on break from my MIL. So today she woke up with a wet bed, with THREE PANTIES, two hand towels shoved in her crotch. She WILL NOT ADMIT TO her accident, but blames the caretaker that she did it!!!!!!!!!!!!!! I told her if she wears the pull-ups she won't have an accident, but in her mind she feels that she is not a baby and doesn't need PAMPERS! I am on my last straw with her. I have known this woman for 27 years, but in the last 10 yrs since her hubby passed her dementia little by little kicked in. She has very high anxieties, get nervous when her daughter is not around, sleeps but poorly, REFUSES to eat, REFUSES to drink water, fights with the aide, curses the aide, yells at the aide, distracts me from my work, etc, etc. We almost lost her in the winter due to kidney stones that made he septic. That was literally a hair close to death, but by the strength of God she survived. I can go on and on. I have 2 teenagers, and a 5th grader, and I have my own business to run, a household, and all school activities to deal with; this is getting too much for me. I know if I refuse her in my house I will look like the selfish one. It really ANGERS me that the other siblings all have (legitimate reasons) other obligations. She is not my obligation, she is theirs. I don't want to think of loosing my mind with her, and i don't want to resent her, i love her, but she is a PILL! She has three daughters and seven sons, and my house and daughter's house is the only feasible place for. Three sons live in Florida, one daughter lives in Cali, one step daughter has her mother in full blown alzheimer's, one son travels 85% of the year, one son lives close but takes her for a day (because she refuses to sleep in his house due to stairs), one son lives solo in a town close by but works nites, one son lives with his life with peace and DOES NOT WANT THE RESPONSIBILITY TO WATCH HER, and then there is the youngest son my hubby who works in the day as I do. OI!!!!! I am so sorry i rambled on, but my cup runneth over! Did I forget to mention I have a 77 yr old father, and a 69 yr. old mother who I don't see often? They at least are healthy in mind with some health issues, but live their lives. I needed a place to vent, but it seems that is all I can do. I don't know how much of this I can deal with; it is already 5 yrs long and it is not getting better. Thank you for your ears.
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My grandmother used to act the same way before we shifted her to Luvida Memory Care. The caretakers help her in day to day activities, they take special care of her dining and amenities.
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Have her seen by the dentist and the speech therapist.
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Mum has lived in a residential home for several years. She wears dentures. She has recently started refusing meals, saying her mouth hurts what can be done about this,
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mrsribit, to help with constipation, what I give for mom (bedridden) is the Benefiber with Calcium. You just sprinkle 1 spoonful in her drink or food. It's white powder and not visible if you blend it with the food. For myself, I went and bought the grinded FlaxSeed which has holes on the top that I can sprinkle on my food. This too, you can try for your mom. But with any fiber source, best to just use once a day (no matter what the instruction is.) When my mom hasn't had bowel movement, I will use the Benefiber (1 tsp only- even though instruction says Tablespoon) in the smaller dosage since mom is not moving. By day 2 or 3, she has watery bowel but this is better than No Bowel. Last time she was constipated, we didn't notice it. It backflowed up into her stomach, etc...When we suctioned her trache, black goo was coming out. Black goo was also coming out of her stomach tube. We called 911 and took her to the ER. She ended up with blood poisoning (due to the backflow of her pooh) and was hospitalized for a month. Now, I keep track of her bowel movement. So far, Benefiber works.
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Bookworm, I just finished typing and hit the wrong with my clumsiness and lost it. thanks, I'll have to try some of these. It turns out that mom's having trouble with constipation and I've been treating it for the last two days more vigorously, with the help of the hospice nurse. I've had some success since yesterday and will keep on it til I feel it's back to normal. She doesn't have false teeth but has many broken teeth that she refuses to get fixed. No infection so no urgency to fix. And at her age the nurse says it's common to lose the sense of taste for much other than sweet, which is why she will willingly eat sweets most of the time except recently with the constipation. It's funny but I tried putting sugar on her food a few times recently after her nurse suggested it and it worked. She gets bored with the same foods over and over though so I can't count on giving the same thing too often.
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Mrsribit, this is my 5th time to re-do this. It keeps disappearing.
I got out my Caregiver Assistance Newsletter on Boosting Appetite.
1.Dentures on correctly and eye glass sitting correctly. (I don't know about the eye glass. I can eat a meal while reading my book.)
2. Make meals that promote bowel movement and normal flow urine.
3. Liquid with meals but too much liquid can cause elderly to lose appetite.
4. Increase flavors by using dressings, spices, vinegar & salt (if no restrictions)
- my dad complains that the food has no taste but it does! So, I get him pickled food that he mixes with his food (like sauerkraut or pickled asparagus.)
- he also likes lemon seasoning that he sprinkles on his food.
- now he likes to put tomato catsup on All his food (gross!)
- he won't finish his food if the it's hard.
But it works because he finishes his food. The one time I was too tired to get up and get the catsup in the fridge, he didn't finish his food. So, I've learned my lesson.
5. Offer frequent smaller meal and also when they are most hungry. (I guess don't restrict them on a fixed schedule. If they're hungry now, then feed them.)
6. Encourage the person to eat the food with their fingers if it increases intake.
(I tried this with dad. But, he doesn't like to use his fingers when eating.)

There's more but it's midnight now and I'm getting very sleepy. So the shorter version of 7-12:
Cold? Flu? stomach bug? new medication affecting appetite?
Constipation? - can cause loss of appetite.
mouth discomfort, sore gums, sore teeth?
memory loss/confusion that makes eating confusing?
depress?

Mrsribit, when she's having loss of appetite, can you try spicing up her food? What may be gross to us, would actually be tasteful to them? I mean, that pickled asparagus was Very Sour! But my dad loved it. He ate it with every meal. The same with catsup (which is sweet) so it also added flavor to his meal. He even likes the cereal Lucky Charms. He said it's soft enough for his teeth and it's sweet. Maybe your mom's appetite works fine but most times it's out-of-whack.

Give it try! And let me know..I'm curious if she's like my dad.
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It's more humane but for those that don't agree I understand their reason. They don't want to withhold food. It seems more inhumane not to feed someone but it's only because they don't understand all about the condition yet. I feel for anyone who doesn't have the ability to make this decision. Either way it's done with love. Thanks for the idea about the milk in the jello. I'll try it.
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Mrsribit, I totally agree with you about the feeding tube. Yes, mom also hid her food in the napkin, or wherever it was convenient for her! When mom started her decline in eating, the home hospice care nurse explained that she will be forgetting to swallow. That this is normal since her body is slowly shutting down. I think your decision is the much more humane way for a person to "go in peace." I recall mom loved jello. We would put milk on it so that it's not so dry when she eats it.
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bookworm I'm sorry for what ytou're going through. I'm not there yet. Mom is able to feed herself and she can eat things that aren't too tough. I don't give her chunks of meat anymore but she eats sandwiches and other soft foods. She just refuses to eat some things. She also plays with her food. She'll put some of her food in her napkin or on the towel I use for a bib. But I will not have a feeding tube put in. I've thought this through for a while. If she doesn't want to eat I won't make her. Plus she would just pull it out anyway. She did with the urinary catheter. Caused trauma to the urethra because the balloon came out intact and full of fluid, 30ml. I can't let that happen with a feeding tube. Plus I know it isn't painful not to eat. The body produces its own pain killer at this point. It is euphoric.
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Mrsribit, I remember when mom started losing her appetite. Actually, we had to change from solid food to pureed food when she kept choking on the regular food. She had pureed food for months - but we had to hand feed her since she lost her motor movement. As long as she opens her mouth when we bring the spoon up, we continue to feed her. Then, it took longer and longer for her to open her mouth. Finally, one cup of pureed food took 2 hours to finish. At then, 3 hours, etc.. Dad then got her a stomach feeding tube. So, that is the progress of the dementia person with regards to eating. Poor mom is now bedridden and not able to move at all. All she does is lie there, day after day...what a lousy life she's having....
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Docketer, I'm sorry for the sadness you have with caring for your mom. It's sad to have to care for someone that is hurtful. I hope things get better.
Jean thanks for the support. You're right. It's harde to know when they can't tell us what they're thinking. When mom talks she doesn't really make sense so I just have to go on how she behaves. It's hard when she wants to participate with us but she can't do what she thinks she can. So she's bored. How does anyone not give up when there's nothing to do but watch the boob tube? I would go out of my mind. I hate for her to be in this condition.
I am trying to be kind to myself. I get stuck on the computer like now. I should be in bed and I'm still up. Recently I got wood and my husband is going to help me make shelves. I'm really excited but with the hot weather he doesn't want to go outside, and I don't blame him. So I will wait. I do figure that when the shelves are built it will give me something else for mom and me to paint.
As for the link above, I believe the first several items fit mom. She doesn't smell anything, and she only enjoys sweets and soft foods. I tried a salad with pureed meat tonight and she didn't want it. I got her a chicken salad sandwich and she ate about 1/3 of a sandwich and some chips. She also had lemonade. So she's eating a little better. Have a good night all.
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Mrsribit, the statement I latch on to is this: "I don't know if this is just momentary or if she is letting go." My husband is in his 10th year of Lewy Body Dementia -- and that is longer than the so-called average duration of this disease. He is still with relatively mild symptoms. But everytime his appetitie is off for a few days, or he is less alert in the daytime or sleeps more, I wonder, "Is this the beginning of the final decline?"

Our loved ones have terminal conditions they are not going to recover from. I think it is natural to panic a little at what appears to be downturn. We want to do the absolute best for them, and to provide constant opportunities for their happiness. And we also know that at some point that will not be within our control and we'll have to let go. I worry about whether I'll recognize the time when it comes.

I think that all we can do -- both you and I -- is to take each day as it comes, and make our decisions in love. There is no guarantee that we'll always be right. Maybe we'll let go too soon, while there was still opportunity for happiness, or maybe we'll hang on too long, creating some unintended suffering. Ultimately it is out of our hands. What will be will be.

Do your best. Be kind to yourself, as well as to your mother.
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my gosh to have a mother with dementia WHO IS A DREAM TO CARE for is such a blessing., Mine was a nagger, complainer, critical of everything I did - was always cold even when 100 degrees outside not wanting fans on - on and on. Argued even when you gave her meds that she'd already had them. I know, I know it's the disease talking but it's turning me into a nervous wreck.

Finally afer a year I put her in a nursing home hoping she may feel a moment or two of happiness every now and then there for at home with me and my son her only caregives she doesn't ever seem satisfied or happy - NOT FOR A SECOND - bless her heart and my sons and may I forgive myself for putting her someplace instead of continuing this horror story.
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mrsribit,

I am sorry that you have to go through this with your mom. Unfortunately, this is a common issue among elders.

Here is an article on Ten Reasons Why Your Aging Parent May Not Be Eating Properly:
https://www.agingcare.com/articles/Ten-Reasons-Why-Your-Aging-Parent-May-Not-Be-Eating-Properly-And-What-You-Can-Do-About-It-133239.htm

This might give you some insight to why your grandparent isn't eating and what to do about it.

Hope this helps,
Karie H.
AgingCare.com Team
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