My mom has Dementia and Parkinson's and has started holding food in her mouth and not swallowing. Her caretaker feeds her, but eventually has to pull food out of mom's mouth. When dad feeds mom, if she holds food, he just quits feeding her and he says she "eventually" will swallow. I have discussed this with my mom's hospice nurse and she has told my dad and I that we need to start pureeing her food. Dad unfortunately is not wanting to do that yet, he says she will eventually swallow. I am afraid of my mom choking on her food, I am stuck between a rock and a hard place. My dad is still very much "in charge" when it comes to making decisions for my mom and is starting to create tension between he and the sitter, even to the point where she has mentioned leaving, which in my mind, is NOT an option.
We just made some adjustments to his meal. Cut meal into tiny tiny bites, used gravy a lot, lots of jello, ice cream, pudding, Ensure milkshakes, etc.
His Doctor said to remember that Any Calorie Is A Good Calorie once they start having trouble swallowing. If desserts go down easier, then desserts it is. Weight loss is very detrimental.
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I added a portion to this post that I had pasted and re=posted. Yes, it is important..
my lo had a test after a stroke...... it was all for safety.......
Hospice will never tell you how to do this, but I learned myself. Here it goes.
(1) You will have to REVOKE hospice. All that takes is signing a piece of paper.
(2) Once you revoked hospice, her mom's regular Medicare will pay for the hospitalization and tube feed placement. The surgery is fast only takes a few minutes (the paper work takes more time)--once they make sure she tolerates the tube feeding, she's back home.
(3) REINSTATE HOSPICE. Very simple to do. Choose which hospice you want and sign the paper. YOU DO NOT need a doctor's order because once on hospice, that's that. Reinstate hospice prior to leaving the hospital -- a social worker will organize all of that. Transport will be paid for by hospice, and they give you all of those supplies for free including tube feedings, feeding pump, tubings, diapers, and so on and keep her on a strict bowel schedule.
Doing it this way makes the feeding tube PRE-EXISTING so they will pay for the supplies!
I did not use that abdominal binder. I went on amazon and bought some "tube tops" that concealed the feeding tube. These tube tops were very comfortable for mum. Mom never bothered with the tube, but when I turned her to clean her, this prevented the tube from being yanked by the covers.
I put mom on tube feedings because death by dehydration can take two weeks or longer. Mom never had a problem with her tube feedings; in fact, she got healthier. However, mom was also insulin-dependent diabetic and decades of that gave her kidney and liver disease--she did not die of Alzheimer's disease but kidney and liver issues. Hey she lived to be 90..I'm completely satisfied with that, and mum died at home surrounded by love. Not once did hospice ever have to give her any narcotics or psychotropics. Mom's death was the most painfree and peaceful imaginable--and at home. Mum was on hospice a total of 2 years.
If you can bring her favorite foods deserts. treats. or meats, veggies, etc... in a form she can swallow,,, that would be great.. You may need to bring it in soup form or soft food... it is ok if she accepts and likes it.... THAT IS ALL THAT MATTERS.
When hospice is on board.. it is to keep patient comfortable to the max...
Please understand that this time NOW... is her new BASE LINE... This base line is the where her new life line begins... from this point... so please love and give her the most fun you can...and the most enjoyable food she wants to salivate. It is okay :)
this will give your family a true test of her swallowing capabilities.
HOnestly,.... the home she is in, can make her anything tasty in the form of a splendid blend of soup, and anything she can swallow without choking to death.
The foods they make my LO smells good and tastes good too. ;)
Yes, you may taste the food.. It is the same without the "choking hazards" :)
A step up from baby food.
If she likes yogurt,,, (kifir) no worries, mom will not starve to death... just blend it so she can swallow.... It Is Ok...
GEt a nurse or doctor in to give her the SWALLOW TEST .... It does help
Since your mother is already on hospice, I wouldn't recommend the speech pathologist or swallow testing. Sure, it can help show dad, but that's a lot to put mom through. You already know she has difficulty swallowing. The test person can make recommendations, but so can a decent hospice nurse. Sounds like you already know there should be transition to pureed or semi-pureed foods, but need help with convincing dad.
You said the hospice nurse has tried to explain to dad. Well, I would have that hospice nurse explain it every time s/he is there!
Getting information online (hopefully a brief description will be enough, as if it's too lengthy, he may choose not to read it) or even better a video demonstration you can show to him might help.
Give props to the caretaker. Make sure the person isn't feeling pressured by dad - if she's feeding mom, keep dad occupied and out of her hair!
Found videos on YouTube that shows both normal and aspiration swallowing images (note the first, normal swallow, is only has about 40 seconds of video, not 1 1/2 min, but it's enough. The second, aspiration, is closer to 1 min, not 8 min (the rest of both is just black screen!) Not sure how much seeing these will help him, but here they are:
https://dysphagiadiagnostex.com/pages/mbss-video-examples
Also, Marysd suggested "Maybe tell your dad you want to try it on a trial basis and see how she does with it." If you can get him to read the information you find AND demonstrate that mom does better on the pureed foods, perhaps he will come around. Seeing is believing...
Hoping for the best for you (and ignore Rusty2166)
AND her dad IS NOT a monster. If anyone is, you are.
I'm concerned that your father feeds her and "quits leaving food in her mouth." I suspect his frustration stems from thinking she is just being stubborn. Yes, she definitely may choke but additionally that means she isn't getting the nutrition and liquid she needs. Every effort should be made to keep your mother hydrated as well as serving foods that have a liquid content and/or are easy to swallow. Since he won't allow puree try slippery canned fruits, yogurt, jello, pudding, Ensure, mashed potatoes with gravy, smash the cooked vegetables before giving them to her, etc. She should be reminded to chew and swallow after each bite. This can be done verbally as well as demonstrating with exaggerated chewing and stroking the neck.
You didn't mention if she is bedridden or eats at the table so she may be past this point but try reducing mealtime stress and make it more enjoyable with a cheerful attitude, comments about how good it smells, music, conversation in between bites etc. If they eat together involve both of them in the conversation.
The fact that your father feeds her when the nurse isn't there makes me wonder how often there is outside help and what other personal care your father has to provide such as toileting, showering, etc. It may be too much for him to handle both mentally and physically. I hope you and your father will work with her doctor and/or home/health/hospice agency for guidance. After a lifetime together, he deserves to love and share her final time as her husband instead of a stressed caregiver. You both deserve to help her cross over in peace knowing you have done the best you could.
Good luck
https://my.momsmeals.com/members/Order.aspx?af=pureed
I agree that he doesn't want to admit she is leaving.
It is really hard to deal with.