Hello, I have a grandmother who is in her 80s with severe Parkinson’s disease. She can no longer move on her own and has a lot of trouble eating. It has gotten to the point where she can no longer swallow any of the foods we give her (she can only take a few sips of Ensure). I have no idea what else to do, she says she’s hungry but can’t swallow anything. I am desperate for any sort of advice/tips/suggestions, I just can’t bear seeing her in this state.

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Hi Isabella2323 - Been there! AM there right now! Please do get a medical evaluation of her swallowing and more than likely she is also eligible for Medicare Voice Therapy rehab. And yes, Voice Therapy (VT) provides therapy for swallowing. My LO with Parkinsonisms hit the same "wall" and I was absolutely amazed at what the VT could do. That along with proper textures for the food. As an immediate thing to try WHILE you schedule appointments for this, suggest mixing a bit of Ensure into pureed foods. Make sure the texture is NOT sticky. In my own LO situation, it also can't be "heavy" or have "particles" in it. So smooth and light weight. If LO perceives it heavy it just sits on tongue and LO can't move it to the right place in mouth to swallow. These are the things the VT can help figure out for your grandmother. It's very individualized. Also changing temperature helped with my LO. Nectar Thick (that's a level of thickness) and COLD apple juice he can swallow more easily than room temp. VT thinks the temperature change "wakes up" his senses. I can't encourage you enough, though, to quickly get help and an Rx for VT. VT is expensive but for my LO his Medicare covered. IT WORKED. After having lost 15 pounds in 2.5 weeks, and being told he likely wouldn't live longer than weeks, my LO has gained all that back, is stable, is swallowing more easily. It was a long way back. Lots of little scoops throughout the day as he tired to eat a whole meal at one time. Essentially you have to think about how to make EACH scoop count (nutrition wise) because there is definitely a tiredness factor with just the activity of swallowing. Please do call and get help from VT. In the meantime, Nectar thickened drinks, puree food (no particles, fluffy, not sticky, not too dense and heavy on spoon) may help. Also for our LO, a plastic spoon and no distractions while eating (no music, visual activity in background, talking, TV, etc.) and verbal CUEing from the person who is feeding. In the beginning I would offer food on spoon into mouth, say "take it, now move it around, now swallow". Very repetitious. And would make sure to watch neck to see if swallow before offering more. Again, based on our experience I think a VT can help tremendously. You really can't go this one alone. And get that medical evaluation. As others have said, aspiration and choking are real "things" for Parkinsons, so having that guidance from experts is HUGE. Prayers for you both! You will find the right path for you and your LO!
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Grandma1954 Sep 2021
this is great info.
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In the immediate term you can puree her food , offering small spoonfuls; however, she needs to have a swallow assessment done asap. It may be that she will need a feeding tube. Aspiration is a huge risk in Parkinson's patients. Liquids should be thickened as well.
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I am assuming that the consistency of food is puree now, and that there is no swallow reflex remaining that is adequate for oral intake. These evaluations are ordered by the doctor and done either by MD, radiologist or OT personnel in hospital setting.
If this is the case your question is now for family and doctor who will have decisions to make. If she is hungry she should be fed. That would mean the placement of a PEG, the insertion of a tube and tube feedings UNLESS your grandmother has stipulated that she will not accept the administration of any feedings by NG, PEG or total parenteral nutrition (as I myself have). This would mean a transfer to Hospice care with the acceptance that your grandmother now is looking at end of life care and comfort care. If none of these decisions were made by your grandmother prior to this inevitability, and she is expressing hunger, then she should have feedings. Any attempts to feed by mouth could and almost certain would result in choking, and of food entering the lungs and causing pneumonia, which is deadly.
I hope the your grandmother's doctor, and her POA are in contact now with one another as to deciding next step decisions. Wishing you good luck.
Helpful Answer (11)

Has she had a swallow study from a speech language pathologist? Ask her doctor to order one.

They have lots of tips and tricks they can show you and advise on the correct texture of her food.
Helpful Answer (7)

Hi, in June finally had PEG tube placed on my 87 yr old mom with vascular dementia, it has been a godsend!!
She can be fed and given water, and medications via tube, it's fanatastic!!
Wish we had done it sooner!
We had to do it or she would have starved to death, she also could not swallow.
Once the tube is placed, the only trick is take your time feeding, inject the food slowly ..we started at 2ml ever 5 seconds, and now we're up to 10ml/10sec....these patients with esophageal motility issues frequently have lax esophageal sphinctures so going slow allows the stomach to expand easier, and helps to keep the food from travelling up the esophagus. Also start with smaller feedings more frequently, we feed mom every 2-3 hrs, 5x per day, but she is a tiny woman 89lbs, 5ft2in, we originally began with 6x day.
We have been using an excellent product, called Kate's Milk, it is a complete meal, with REAL ingredients, NOT just chemicals, also importantly for us it is vegan.
We have gone to vegan diet to help with her cholesterol and it has worked amazingly!
Good luck!
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Cover99 Sep 2021
So she has this tube, what is her quality of life, now?

My mom had one in her early 80s, with no dementia, She still passed less then 2 months of having it.

All it was was a money maker for the GI doc, since he still billed for his services, even when she was in ICU and the tube feeding had been stopped.
It's time to talk with the doctor about a feeding tube asap. Sadly, it will get to a point that they could choke on their on saliva and a tracheotomy will also have to be performed. A lot of decisions will need to be made. I just went through this with my 77 year old husband with stage 4+ Parkinson's (originally diagnosed in 1999). There are no easy answers or right or wrong decisions. He had never wanted to sign a DNR. However, he finally made the decision - enough was enough - and opted not to have the procedures as he could no longer swallow. He was aspirating and got pneumonia. I agreed with his decision. Over the years we did every type of therapy possible - to make it as good as it could be. There finally comes a time when there isn't much more that can be done. He was in the hospital and was moved to a hospice facility. Fortunately, he did go quickly and peacefully.
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Medicare pays for a Speech PT. I know they call it a speech therapist, but they treat swallowing.
There are many conditions that can cause dysphagia, or difficulty swallowing foods and liquids, such as Parkinson’s Disease, etc. These difficulties in swallowing can cause coughing/choking during eating and drinking, unintentional weight loss, reduced quality of life, and possible respiratory infections, such as aspiration pneumonia.
I had treatment (86 years old) because I have trouble swallowing certain foods. The physical therapist was excellent. not only did she help to get the muscles stronger, but tips on swallowing, like jello, mashed potato etc. I would give it a try.
Best of luck
Helpful Answer (5)

Isabella2323 - one other quick thought. If part of your dilemma is how to get grandmother to medical evaluation, search online for in home physicians. There are visiting doctors in many areas. Possibly also check if your grandmother has any medigap insurance, like through AARP perhaps, which may offer telehealth where you can at least talk to a medical representative to define a path. Those experts could get you started on a successful path. This is not easy stuff. Everyone in this forum "gets it". Stand strong! Prayers for you (and all in this forum).
Helpful Answer (4)

Feeding tube, but they take a lot of care. My mom had one and she did great with it but it is a LOT of care. You will have to hospitalize her for this but the procedure only takes a few minutes.
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We went through the same thing with my 90 year old mom. Puréed foods really helped and also the reminder to swallow what is in her mouth first before giving more. She did not want a feeding tube. She did have a voice therapist but in her case her Parkinson’s had advanced so much that there was not much to be done. Her hospice nurse was so patient with her and really helped the family along the way to understand her condition and how to support her. Not sure yet if your loved one qualifies for hospice yet. I can not say enough good things about getting your loved one on hospice as they have so much experience in this and can really help the family out. This is the third time for us using hospice for a parent and I have never regretted it. Enjoy your loved one while they are still with you and always remind them how much you love them.
Best wishes in this difficult time.
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