Grandmother with severe Parkinson’s can’t swallow, don’t know what else to do. Any tips?

Moukie and others who may be tempted to comment, this thread is from September.    There's been no update by the OP since then.

Hello,
I am hopeful that my experience in taking care of my mother who was 93 at the time may be of some value. She had severe dementia and was recovering from a series of mini strokes at the time.
At one point my mother refused to drink even a sip of water from a cup after she choked making several earlier attempts. As time passed she only seemed to become more resolute in her decision. In her mind I'm sure that cup looked like an ocean and one sip felt like she was drowning in it. Who wouldn't rather sit on the shoreline? But with the clock ticking we knew we had to do something.
To bridge the gap we decided to try a small baby bottle that is used to feed small birds, etc. and holds about an ounce of fluid. These are readily available at almost all pet stores. Starting with just a few drops at a time it truly was just like feeding a baby bird. But with a lot of patience (3 hours worth), a few drops turned into a kitten suckling a bottle. Water was quickly exchanged for milk.
With time, the increased intake meant enlarging the tiny hole in the bottle which reduced the feeding times. The one ounce bottle became a four ounce bottle and finally an eight ounce bottle. It should be noted that the hole size should lag behind the persons ability to swallow as a safety margin.
Since my mother was also bedridden, it was also necessary to elevate her bed at an angle and turn her head/body to the side to prevent aspiration. I hypothesized that she lost her fear of drinking because she could control the volume (albeit slightly restricted) and had to have confidence only in herself. Over time, my mothers swallowing ability improved to the point where she could even eat pureed foods but she never regained the confidence to drink from a glass. She simply refused.
I am not going to speculate on how many others this may or may not be able to help. But I do know that one of the happiest days of my life was when my mother began to drink from that one ounce bottle that led to another five years of life. Yes it is a lot of work, time consuming, etc., but if you can get through the first six months I would have gladly done it forever. As to whether my mother appreciated the effort I can only leave you with this one last thought:
My mother told me she loved me more in the last year of her life than in the first 97 years put together.

It is time to call Hospice.

NO FEEDING TUBE

Try to work on her swallowing.

Sorry for her and you.

See her doctor. It may be time to have a feeding tube inserted. They are not difficult to learn to use.

So sorry your grandmother is going through this.

This all depends on the choices made by her and your family.

After my mom stroke she couldn’t swallow and had to have a feeding tube put in until she regained hers while working with a speech therapist.

You need to call her doctor and get a swallow study done to see if she is at risk of aspiration and have them evaluate. They can clear her for certain safer foods as well as suggest products to thicken things that helps with swallowing issue. I took my mom for her swallow study but I did hear of a mobile swallow study in my area (you could ask her doctor or home health about a mobile one) in your area. Speech may be able to help strength her swallow with exercises and teach the family etc.

But you need to make sure she is sitting up properly while eating or drinking (water is best right now as if she has signs of aspiration as it’s less harmful) and call her drs first thing in the morning. Praying for you and your family.

Isabella2323: Imho, most food products can be put in a blender to make it easier for your grandmother to swallow. However, it would be advisable for her specialist(s) to make assessments. There is one longtime poster, earlybird, on the forum who purees her mother's food and has a special chef, right earlybird?

Do you already have a home health agency assisting? If not, call her doctor and ask for help immediately. Medicare pays for it. Discuss swallowing problem with dr so he understands the urgency. If you already have an agency - talk to them right away. There are people who can help you and her with this problem

Try to puree diet. You can use a straw to feed her. Just season it to give a little flavor. It's hard to get them to eat food without flavor. You can add applesauce to sweeten it. Also make sure she's sitting up when feeding her. Dont want her to strangle and aspirate. Hope that helps.

either you place her somewhere and let them know the situation OR you hire someone to show you how to mix up stuff (thickener) to help her swallow or therapy to re-teach her. it will only get worse and the better of the options would be to place her. they know how to handle that kind of stuff. wishing you luck.

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

My 97 uear old Dad has been on a sift and liquid diet for 2 yrs.
Enurse
Milk
Juice
Aplease sauce
Yogurt
Masked Avocado
Masked Bananas
Mash Potatoes
Masked Sweet Potatoes
Soup
Ritz soft Crackers
Ice Cream
Pudding
Shakes

Mare everything soft and no chewing

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.

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.

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).

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!

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!

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.

Can you consult a speech pathologist, to help with swallowing? Consult doctor for advice on this.

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.

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.

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.