This was new - swallowing

May flowers

So, my FIL can still chew and swallow food but had been choking on liquids so we started thickening them a few weeks ago. So far it has worked well but tonight he did something odd. He drank two cups of water with no problem, but then at dinner he got a mouthful of drink, and swished for what seemed like forever, then spit it out. Then he did it again, but it was scary because he wouldn’t swallow or spit, was just swishing the liquid (thickened) around in his mouth - and then he needed to cough too. This went on a long time. He eventually swallowed, but boy were we scared. I leaned him forward and was going to try open his mouth to get him to spit out the drink but DH (smartly) stopped me saying I was going to get my finger bit off!

How to handle this in the future?

All this after an amazing day - very alert, communicative, and enjoying his new Geri chair. This chair works so much better than the high back chair - he was sliding out of the high back chair even over the pommel (waste of money). When I reclined the high back chair to slide him up, the chair tilted back and almost dumped him on his head. The nurse saw this happening and said she would go to bat for us for the Geri chair and we got it today. God bless that nurse!

He is still sliding way down but not out, and he can use his tray to push himself back up. He seems much more comfortable.

Battlebuddy

That is exactly what my husband does . He will suddenly start swishing his drink- not swallowing and not spitting it. I’m told it’s part of them forgetting how to swallow. It’s gone on for a while, and I mean hours. I’ve tried pulling on his check or lip to one side and down. To release some fluid. Sometimes offering food works to kind of reset the swallowing. Mostly you just have to wait till his brain remembers how to swallow again. It happened once a week and then became more frequent. It comes and goes right now at our house.

abc123

I'm sorry this is happening to both of you, Mayflowers and BattleBuddy. My LO started just this past week. Our hospice nurse told me its because mom's brain no longer remembers how to swallow. She was holding the food in her mouth.  We have switched to baby food only. She sometimes can use a straw, not very often though. We are using a syringe to give her water and juice, a 10 ml syringe. Daytime nurse requested a very large syringe, hospice nurse came over and demonstrated why we shouldn't use a larger size. She made a great point. The larger the syringe, the less control you have over the amount of fluid our LO's get, we could actually cause them to choke! The nurse told me that no matter how much experience the hired sitters have, they do not know as much as they think they know. Before any changes are made to mom's care, I discuss it with the hospice nurse first. I took care of my husband for two years. I lost him to cancer. Caring for mom is 100% different than taking care of my husband. Mom has also lost control of her trunk. She can't sit up anymore. She was leaning forward way too much. So no wheelchairs at this point. She is confined to bed 24/7. We are turning her every two hours. I pray she doesn't get bed sores. If she lives much longer, she will probably get them due to her skin breaking down. We give her 15cc's of lactulose every morning to prevent constipation and it's working. We started with a very small dose. She has lost so much weight very quickly. I can see her hip and shoulder bones. That upsets me a lot. She sleeps most of the time now. Hospice nurse said let her sleep. Do not wake her up or try to stimulate her into waking up. Don't rub on her, don't brush her hair, etc. Nurse said she will wake up when she is hungry/thirsty! At that point we can offer food and drink. Mom woke up twice today and ate a jar of baby food both times and drank a little water and juice. We switched to a new medicine in a topical form for terminal agitation at the end of life. I must wear gloves to apply it to a spot where no one else will touch her. She has had two doses with no side effects. I hope that I have shared something that will help someone else. I thought I was prepared for stage 7 and I'm not. Not at all. It's an entire list of new and different things to watch out for and worry about. Sending you peace.

Jo C.

Those swallow issues can be can be confounding.  Our way with intake was to start low and go very slow using thickeners and pureed foods that still tasted good.  Retaining food or fluid can be an issue and I worried so about aspiration, but somehow that was avoided.  Early on, we did have a swallow test performed and it gave us the guide for what was happening and what was to come; the speech therapist who performs swallow tests gave us much specific information which was helpful     .  It does sound as though your LO may or may not benefit from a swallow test by this point.

 ABC, you are doing such an excellent job of caring for your dear mother.  As for the skin breakdown, it may be very helpful to have Hospice order an alternating air mattress for under your mother; it may well help her skin integrity as well as her comfort.

If there is time and if it is appropriate, a "guerney chair" can be provided.  This is what worked for my mother at the end of her life.  It simple folds flat, goes to bed height and we could slide mother from bed to chair. Once on the flat chair, we could put the top back of the chair up and the bottom of the chair down for her legs . . . it was all quite adjustable.  we got to the point in which legs were kept flat instead of down as would be in a regular chair. The chair also had special headrests if the head was not steady to be held up.  Since the back of the chair could be adjusted in many ways, that also sufficed to keep her comfortable and from sliding.  She would be in the chair once a day and seemed to be comforted by that.

Only one person's experience, it may be that your mother would no longer be served by such a chair, but the alternating air mattress may be, as said, helpful for her skin integrity and comfort.

Let us know how it is going, we are thinking of you.

J.

Finding Joy

Thank you for sharing this. I feel like I am heading into this with my Aunt. I have taken care of her for 5 years now. Things have made a different turn, not walking, not eating, keeps eyes closed most of the time. All you said if very interesting and helpful to me thank you. I am having hospice come in to evaluate her but also looking into a Memory Care facility. I have learned a lot about this disease than I ever thought I would. I continue to second guess everything and if I am doing the right thing. But she is at a level of care that is beyond me. Blessings to you and your family. Prayers for your mom.