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It sounds like my mother is in the same stage as your mother-she won't eat very much and can only drink from a straw, non-verbal and sleeps most of the time. If she has her eyes open-it doesn't look like she is really looking at anything.
I thicken some of her food only to make it easier for me to hand feed her. I do not thicken her liquids. I back off if she won't open her mouth and so she has lost 10 pounds in 2 months, She is down to 90 pounds now. My thought is I rather have her stop eating on her own than for me to feed a wisp of a contracted body who cannot see or understand a word, and whose only respite from confusion or mindlessness is to be asleep and dream.
We all will die-and I want my mother to die with dignity- but I will never stop feeding her as long as she opens her mouth to eat. I make sure everything she eats is tasty and something I would eat, too. But when she doesn't want to eat-I stop.
Thank you so much - and yes it sounds like right now we are leading parallel lives. I'll keep you and your mother in my thoughts and prayers.
Coughing while eating/drinking, holding on to food or drink in her mouth, using a straw - those are big risk factors. The issue with thickened liquids is - well, take a taste of thickened water. If the patient isn't enthusiastic about staying hydrated, thickened liquids will reduce that enthusiasm more.
You might want to try the thickened liquids and see how she responds. If she is resistant or won't drink, that might be your decision. I'm not sure getting her to switch if she doesn't like it is worth fretting over - often a swallowing study would be recommended but I would assume not on hospice. Similarly, you might just let nature take it's course. Might be worth talking to hospice about.
Good luck. Watching someone slow down is difficult.
Welcome to the boards Star26,
I am sorry you are on this journey with your father. You will receive lots of support here. I just wanted to thank you for your very informative post. Your experience as a speech pathologist/swallowing expert will be of great value to many here.
I really tried to observe this morning at breakfast. Mom no longer has solids ...hasn't for a couple of months. Everything is pureed. I sometimes find she likes those Odwalla protein drinks but then again, some days not. Today I did get her to eat about 50% of her eggs and she drank a cup of orange juice. She isn't doing great taking things from a cup...actually seems better with a straw...but now I get what you are are saying about it perhaps being problematic. There are one or two CNA's that I know sometimes just put all the pureed food in a cup, mix it with milk and have her drink it from the cup. I cringe some because I feel it's somewhat forced (shouting her awake and sort of forcing her lips apart to start sipping it). I mentioned to the hospice person today that I am noting it takes longer for her to swallow or that she holds things in her mouth. To me her swallowing is louder or more pronounced if that makes sense at all. Hospice says she has not observed it but will try to. (I'll be honest, she's a very sweet aide but I'm not feeling she's of tremendous help ..yet??). Mom gets 1 hour of hospice a day. I think for the most part it is super early in the morning and she gets mom up, lotioned, dressed and her bed stripped and made up fresh. Other than that I don't think there is much. She did offer the same tip about pinching off the straw a few weeks ago when I noticed some issues.
We talked a bit this morning about thickened liquids. Perhaps it's time to try those. I just want to be sure that what I'm doing is for my mother's comfort/safety and not taking measures that feel forced. As I've said before, she's 93 and I just want her to feel peace.
Thank you again so very very much.
Tellas33, remember that you're in charge. If you don't want them waking your mom loudly up to eat, then tell them not to. If you want them to wait until she wakes up naturally, and then bring her food, tell them that. If mornings don't work best for your mom, ask hospice to change it.
You are the best person to plan out how your mom's transition to go. I agree with you - she's a person, she deserves accommodation and dignity in her last days.
Sounds like you're doing great.
Welcome to Star & it's good to hear from a speech pathologist on here.
My sister needed thickened liquids long before her dementia got bad because of throat issues. I found the "gel thickener" that Star referred to worked the best for my sister. It is called Simply Thick. Yes, it's more expensive than the powdered thickeners, but it does not have an after taste & once mixed into liquid, it ALWAYS stays thickened. Powdered thickeners eventually settle to the bottom of the glass; and yes, they are gritty & don't have a pleasant taste to them.
I'd recommend using the thickener to try to avert getting aspiration pneumonia. My sister had aspiration pneumonia many times, and not only would it be the thing that would possibly take your loved one at this stage, it's very painful for them, too.
Best of luck to you in finding the best & most comfortable way for your mom to get through to the end of her journey.
My father lost some of his swallowing capacity and ended up with pneumonia and sepsis about 4 monthsago. He was on life support for nearly a week. That hospitalization took away so much. He returned to the nursing home and has continued to decline. When he first returned, he had puréed food and honey thickened liquids. He was able to go back to solid (non crunchy) foods but liquids still need to be thickened. He’s not wild about it but does okay, though he’s now in hospice and is refusing more meals as we enter this final stage.
I wish you and your mother much peace and comfort. It’s definitely not easy to adjust to their changing physiology and condition.