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Oatmeal, I'm so glad that you are going to be "boots on the ground".

Getting someone in from a Hospice organization may be the easiest way to have this conversation with mom and the rest of the family. This is not their first rodeo, like it is for the rest of us
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They are saying that liquids are a aspiration choking hazard now so they don’t do ensure or boost or anything like that with Parkinson’s patients if they are having problems swallowing. They will do a soft serve ice cream with the patients I’ve seen. They are not offering it to my mother though so not sure why not. Will arrive today in time for lunch to see what’s going on. I do believe it’s just taking her too long to eat now, the food is puréed and dries out fast and they don’t have the staff to sit there and feed her one on one so she sits there for hours. We can afford to hire someone to feed her IF THATS WHAT SHE WANTS? That is the question the sibs are hung up on now. Does she want to eat anymore and will she be honest with us!

thanks for all the input from everyone here.
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annemculver Nov 2019
You’ve had helpful suggestions here.But I am infuriated at your siblings, who seem to not want to be bothered! If Mom eats when fed, she should be fed! Staff needs to know what temperatures are suitable and, if necessary, hire someone who will follow your suggestions as to what she needs. And your siblings need a good whacking - wait until they’re at that stage!! My main point is : never let yourself be the ONLY person doing anything for her. This is a burden not to be borne by just one!!
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When my mom was in a nursing home for rehab I met a lovely volunteer who fed a woman who could not feed herself. God bless that wonderful woman because the nursing home was understaffed and the resident did not have any family nearby.

Do you know of an organization that would send a volunteer if you or your brother are not available to be there?

This is so sad. My mom has Parkinson’s disease too. I can empathize with you. Hugs!
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Oatmeal55 Nov 2019
We can afford to hire someone to feed her. But sibs are divided on whether SHE wants to eat or not. Only one lives close enough. The rest of us are scattered. I will be arriving today.
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I think that getting a Hospice evaluation is a good idea at this point; Hospice can often solve problems that the rest of us can't figure out!
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cwinter Nov 2019
In my experience with hospice... they do not stay very long. We got a twice a week nurse to evaluate, then a body washer/groomer once or twice a week... that was it for body service. They had other visitors, like a chaplain, and some "singers" which I declined. The type of time intensive care such as feeding, was not part of the program.
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I forgot to add. If she is still having trouble swallowing solid food, you can give her a small amount of some lemon Italian ice. The lemon causes the saliva and the sweet taste will induce the swallowing.

We've been doing this for four years. Another thing I would add is that drinks have to be kept cool or she won't be able to swallow. The staff is letting food sit and deteriorate into a condition that can't be handled by your mom. Food dries up breaks apart, which can't be held together in the mouth. Drinks warm up and the throat muscles will not move to allow her to swallow. I have a neighbor who has Parkinson's without a sign of mental decline. She uses the same techniques.

The problem is that the medical staff doesn't have the time since staffing is kept to a minimum. I would also be very wary of non-medical opinions such as she refuses to eat or has forgotten to eat. It may very simply be that she is refusing food or liquid because they served it to her in a condition that is difficult to hold in her mouth and wait for the swallow. In a word, she is afraid that they will give it to her in a form that cause her to choke. When you work with her, always ask her if the food was okay for her to eat, whether it's too dried out or too thin to hold together, and whether a drink is too warm. You may have to go back to the kitchen and bring back something else in better condition to be eaten.
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Oatmeal55 Nov 2019
Thank you for this advice on the lemon ice! I will try this today once I arrive. Awaiting my plane now.

all of what you say is true: understaffed, dried out pureed food, long feeding time etc.

question between sibs is does she want to stop eating, is she really hungry or just can’t stand to eat that food anymore or does it take too long. Mom will never tell us the truth. She doesn’t want to be a burden. We can afford to hire someone to feed her but is that what she would want, is the burning question here. I guess I’m the only hold out among my sibs right now on that. I think we should. That’s why I’m going early to see for myself.
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There is a part of the brain called the motor cortex that controls voluntary movement. If it is impaired by dementia, it can affect the ability to move utensils with her hand to her mouth to feed herself, to swallow solids and liquids, and the ability to speak as well as other actions. If you bring the food to her mouth, she will chew and wait for the glands to salivate and for the throat muscles to allow her swallow the food. You may have to use a food processor to prepare the food to be smooth and soft enough for her to chew and swallow. A clear thickener might also be needed to allow her to drink fluids by holding them in her mouth while she waits to swallow. The aides may screw it up by allowing food to dry up which will make them fall apart in her mouth and make them difficult to hold in place.
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Pepita48 Nov 2019
Thank you for the ideas you present here; my mother (who lives with me and is pretty much bed-bound) is having the same problems in eating on her own now, can't manage hand to mouth co-ordination very well. I let her do what she can on her own, and then help her with the rest. She will often push her plate away when half-way through her meal, but if I leave it there for a while, she starts eating again and sort of wanders through it while her mind is occupied in watching TV. She won't drink her tea until it is almost cold - now I know why. The thickener is a good idea to help with swallowing liquids, as is the Carnation Instant (she's not at all keen on Ensure, so I'll try anything that might get some more nourishment into her). Thanks again - whatever problems I encounter, I always know that I'll find some great solutions to try on this site!
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Have the occupational therapists done an assessment to see if adaptive utensils might help? Utensils with built up rubberized handles made a huge difference in my mom being to feed herself.
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Oatmeal55 Nov 2019
She’s way past that point now. Combination of arthritis in her hands plus the Parkinson’s.
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I work as a front desk receptionist in a Memory Care community which houses dementia residents, Alzheimer's and Parkinson's sufferers as well. We have a woman who's in the advanced stages of the disease, and 3 of her children alternate coming in to help feed her lunch & dinner every day, as she's forgotten how to eat. Like your mom, she will eat if fed, but not otherwise. If you're unable to go in to the SNF physically to help your mom eat every day, you can consider hiring someone for that express purpose. I think with Ensure or Boost, again, she'd have to be helped and/or encouraged to drink it, right? Unless she's okay drinking on her own.........and then you can certainly bring in a case or two of those products.

Have you had a hospice evaluation yet? If not, you may want to do that so you can get their opinion on how to proceed down this difficult path.

I'm sorry you are facing such a tough situation; my heart hurts for you. All the best to you.
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Oatmeal55 Nov 2019
She hasn’t forgotten how to eat. Her dementia is not that bad! She can still track her favorite sports team and most of the time knows who we are. She just can’t hold the utensils and bring anything to her mouth because of the Parkinson’s. Plus swallowing is slow. So small mouthfuls are needed. but I guess she is saying she’s not hungry sometimes but eats when it’s offered. Will tell you when she’s had enough.
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I would go myself and see what the situation is.

If mom eats when fed, I think that it is cruel to withhold food and just not feed her.
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Oatmeal55 Nov 2019
Yes I’ve rearranged my schedule to go now instead of Thanksgiving. I was there on October and she ate just fine.
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