Swallowing problems in Alz.

I’m not there yet with my DH. All these decisions we have to make is so hard! I’m sure you’ll get some good feedback, and I’ll keep you in my prayers.

I'm not there with yet with DW, looking forward to seeing some good input on this thread.

All of the disease is difficult. I put my husbands meds in pudding after I crush them up. This has been going on for a year. He is also given an ensure if he doesn't eat much, twice a day. He has lost weight. Unfortunately, that is just 1 of the symptoms of the disease. May God bless you & take a deep breath. There is nothing easy about this disease, except the love...

@SBL83 said: For those of you who have had experience with your loved ones having swallowing problems, how did it start, and did it continue to get worse?

My dad had swallowing problems, but they weren't especially obvious beyond occasionally spluttering on liquids like water or coffee. The bigger issue was silent aspiration as the result of a sluggish epiglottis or dysfunctional digestive process. Not only is silent aspiration difficult to detect, but it also doesn't always involve food-- a PWD can aspirate on saliva or reflux.

Dad was in a MCF. The DON and I were concerned about dad's significant weight loss in general and specifically since his admission 6 weeks before. Mom and I brought him high calorie foods daily in addition to the 3 meals and snacks served at the facility, yet he lost about 25lbs. His geriatrician explained that his digestive track was no longer getting reliable signals from his damaging brain and that much of what he ate was "going right through him".

The MCF brought in an SLP to do a swallow evaluation. I was there when she came and made recommendations for safe feeding for dad which was super helpful as they were counterintuitive to information I got from other caregivers. We decided against mechanically processed food or thickened liquids, but she said dad should only be allowed to eat sitting up (he liked to lay in his bed and snack), that he shouldn't drink from straws or sports bottles and that mixed texture foods (unpureed soups and cereal with milk) weren't safe for him.

Based on her eval, we decided to order a hospice evaluation for the next morning. Dad died from what was likely complications of aspiration pneumonia later that night based on an X-ray and bloodwork done that afternoon.

HB

@SBL83 I agree with the above wisdom and experience. My DH's swallowing issues were a bit different in that he first just seemed to forget to swallow. It shows up on the Tam Cummings stage 7 description as "squirreling" or pocketing his food (in his jaw, for us). But he would keep spooning it in, then fall asleep, wake up, breathe in and choke --because he was inhaling food that he hadn't swallowed before. Just asking for aspiration pneumonia which is a fast track to end of life for PWDs. I've performed the Heimlich twice on him successfully- once more than a year ago, and once last month. Because I can't just stand aside and watch someone I love suffocate to death.

So, in a sense, switching him to pureed foods, and alleviating the chewing reflex -- (plus we've been crushing his meds since Stage 5 or 6 to make it easy to get them down) -- it just adds to his comfort, my peace of mind, and more likely helps him have a better quality of life (maybe even longer life vs. a sudden choking death or aspiration pneumonia.) Longer life at this point is not a goal for us, but I'm not rushing him out of here either.

I hear your sadness and fear that this is progression and you're right, it is. That is inevitable. But adjusting to the progression with things that make it easier to get nutrition, meds, etc. in him in a comfortable way -- that doesn't cause him to die or decline faster. I hope that makes sense. Honestly, DH gets more nutrition via only pureed foods and protein shakes because he had started chewing his soft mechanical meals for hours, not swallowing, and was suddenly losing weight visibly.

I hand feed most foods to my husband because he eats slowly these days but he swallows most foods other than things that are really dry without any obvious problems. I can relate to the slow chewing. He doesn’t hold food in his mouth but he chews each mouthful many many times. Butterfly, you mention feeding your husband puréed foods and I fear it won’t be long before I’m doing the same here. Do you buy special foods already puréed, or just purée them yourself in a blender or food processor?

I also live in fear of aspiration. I understand this can happen without the obvious signs of coughing or choking. How can you tell of someone has food in their lungs without an X-Ray? Anyone who has listened to his lungs with a stethoscope so far has said they sound clear. Would they actually be able to tell? I purchased a stethoscope for this reason but my hearing isn’t as good as it used to be and I can only vaguely hear even a heartbeat. Plus I’m not exactly sure what I’d be listening for. Perhaps a $20 stethoscope isn’t good enough.

@ButterflyWings thank you so much for your detailed and reassuring reply. I could do that. Like you mentioned, you’re also in control of the nutritional value and quantity of what he’s eating and not just the calories and a bunch of chemical additives and added vitamins of a manufactured purée.

My husband takes Respiradone which seems to be the the cause of some drooling before bedtime and first thing in the morning. It’s been good at keeping him calm without making him groggy. (Alz/FTD diagnosis) He doesn’t drool at other times. He sleeps in a hospital bed that I rented for him that I can adjust to keep his head raised. I’ll read that article when I get back from errands that I do while the caregiver is here.

SBL83,

What you are describing is end stage dementia. I think the hospice folks are spot on with their 6-12 month prediction. I am sorry you and your husband are going through this.