Swallowing problems in Alz.

SBL83

I mentioned this in my question about hospice timing, but still have questions someone might be able to answer. To recap, my husband is 71 and was diagnosed with Early Onset Alzheimer’s and vascular dementia about 8 years ago. He also has diabetes and some other things.

He is mostly stage 6 now, and has lots of confusion, weight loss, trouble walking, trouble with ADL’s etc. , and the recent decline has been pretty significant. He has also started having trouble swallowing pills for the last month or more and complains they get stuck and gag him etc. He definitely eats less than he used to, and doesn’t want meat etc, but he can eat.

Because of all of this his Dr. recommended a hospice evaluation 2 weeks ago. He was evaluated and approved and hospice has begun. The problem is, I’m still confused what this means. Sometimes he seems to swallow just fine. I know the concern is aspiration pneumonia , malnutrition etc. 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? Hospice is already talking about withdrawing some of his meds and not continuing to treat some of his conditions, and yet sometimes, when he swallows fine, I’m so confused if the swallowing problem definitely means things are heading downhill.

thank you in advance for any insight you can give,

SBL83

jsps139_

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.

SSHarkey

I would suggest you speak with the hospice nurse and ask about those things that concern you. The nurse will have the experience to discern what is happening and what to expect.

FTDCaregiver1

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

DCCEPEK

@SBL83 , MIL drooling started for a couple weeks along with other other symptoms you described. Swallowing decline was a sign that the end was near. She passed about 4 weeks later. Hang in, prayers

Life Matters

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

https://alzconnected.org/discussion/comment/202565#Comment_202565

Thank you so much for your input. It is helpful. I’m sorry for your loss.

SBL83

https://alzconnected.org/discussion/comment/202583#Comment_202583

Thank you so much for the information. Yes, it is difficult, but the love is easy, as you said. When your husband feels like eating, can he still swallow some foods, or are the swallowing problems mostly with the pills?

Phoenix1966

Swallowing issues were the beginning of the end for my grandmother. It started in an intermittent fashion before becoming an ongoing issue. It never cleared up.

SBL83

https://alzconnected.org/discussion/comment/202598#Comment_202598

Thank you for the information. I’m sorry about your grandmother.

Phoenix1966

Thank you.

It’s very common for hospice to start withdrawing medication at this point, since the focus will be comfort care and not “curing” his disease. With my grandmother, her blood pressure medication was discontinued along with what she took for Afib.

Although the criteria for hospice approval is that the patient has six months or less to live, it is sometimes a little looser for dementia patients. Several members here have talked about the re-certification process in 3-6 months and having their LO on hospice for a year or more.

I’m sorry you had to find your way here, but your husband is lucky to have you advocating for him.

White Crane

Have you tried puréed foods for your husband? Meat is very hard to swallow for someone with swallowing difficulties. Bread can also be difficult to swallow. Try keeping everything soft and very moist. As someone else mentioned, crush his pills, and put them in applesauce, or pudding. I’m sorry you and your dear husband are having to go through this.

SBL83

https://alzconnected.org/discussion/comment/202614#Comment_202614

Thanks for that information. His blood pressure has been lower lately anyways, so imagine the blood pressure meds will be gone soon. I’m hesitant to remove insulin and Metformin at this point. He has several more meds that I worry will cause discomfort if we remove, but I guess time and hospice and his doctors will help navigate that. I am hearing many ppl say that the rules for dementia patients to qualify for hospice are a little looser, and that many people with Alzheimer’s on hospice stay on it for a year or more. I guess my fear is that since we started hospice fairly soon after the swallowing problems started, that by stopping some meds etc we will hasten his death. When I mention to the hospice nurse that since he is only having difficulty swallowing pills sometimes and only having trouble with some foods, should I still crush pills and move to soft foods, or could I wait til it gets worse. She says it’s best to use thickener, soft foods and crushed pills now. Then I wonder if his swallowing problems are related to Alzheimer’s since they don’t happen all the time. My mind and brain are all over the place on this. He does have urinary incontinence and is confused a lot with delusions and hallucinations, though the seroquel has helped calm him some. He sleeps a lot and prefers to lay down all day and watch tv, but he has done this for a while. The swallowing pills problem did start with this most recent , significant decline that started a couple of months ago. Thank you for listening and for sharing your experience with your grandmother. That’s very helpful.

SBL83

White Crane,

i tried to reply directly to your message, but it wouldn’t let me. Thank you for your helpful suggestions. I will try the puréed foods and try crushing the pills in pudding again. I was hoping he would eat applesauce , but no go. Maybe I need to put less pills in the pudding at a time so it’s not so bitter. I will also try to keep things moist . When he has tried to swallow pills, he has mentioned that he tries to get them moist to help with swallowing.

thank you and take care.

Cecil Jones

My wife also has problems swallowing pills but seems to eat ok. She was evaluated for hospice 6 weeks ago and was accepted. She has no problem eating most things. I have to watch her when swallowing pills. Sometimes she'll drink a glass of water and yet the pills are still in her mouth. I go with step by step...I give her the water in her right hand, then the pill in her left-hand and tell her to swallow the pills and drink water. Most times this works, if altered in any way I'll get this confused look and she might put the pill in the glass of water. (For now) I think my wife is forgetting how to swallow because it's a two step process? I'm sure things will change, it's just a darn mess!

Added: Oh, almost forgot. One pill at a time does better than multiple pills.

harshedbuzz

@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

housefinch

Any difficulty swallowing and weight loss, in addition to the other decline you’re describing, are usually signs a person with dementia is declining toward late/end stage. @M1 may also have some professional experience to share. Agree that you may be seeing only the tip of the iceberg of swallowing/aspiration issues. Sadly, I suspect the overall disease progression won’t be affected much by whether he continues the diabetes medicines, but I’ll let your hospice nurse and @@M1 comment if they can. Sending you hugs and comfort.

ButterflyWings

@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.

SBL83

Thank you all so much for all of your responses. Everyone is so kind to take the time and effort to share your knowledge and experiences. All of this information is so helpful. It really is. Hugs and prayers for all of you. I wish you all luck in caring for your loved ones and sympathy to those of you who’s loved ones have passed away. This is a long, hard journey for us caregivers, but I can only imagine how much harder it is for my husband. I want to do as much as possible to give him good quality of life for the time he has left.

thanks again for all of the good information and advice..

ImMaggieMae

https://alzconnected.org/discussion/comment/202693#Comment_202693

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

@ImMaggieMae said "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 just blend everything myself. It is less costly plus its the only way I could try to get the same quantity of food in him, and correct range of nutrition. He lost weight when pocketing and chewing those weeks and then we both caught a bad cold or flu from one of the aides aargh...so I was afraid this pureeing stage would be a rapid end and I would really feel I'd failed in meeting his needs, if so. I've figured it out better now. The preparation takes more time than before, but that's the hazard of dementia progression. I think, if not this, it would just be something else.

For example, I make his bowl of cold cereal with fresh strawberries, blueberries, bananas, and almond milk and then dump it in the blender - puree it and feed it to him. Every plate of dinner food (pull the chicken off the bone first of course) or lunch (even a whole tuna salad sandwich) gets a little broth or water to moisten it and then into the blender to become a thick soup. Or something the texture of hummus, bean dip, or whatever. The beauty right now is, he will still eat anything.

Once I got over it in my mind, it is fine now. I have a blender and also one of those bar mixer type handheld blenders, and am constantly using and washing one or the other. We always had a breakfast smoothie in the morning, so I load it up with anything healthy now -- even adding canned fruit, peanut butter, cranberry sauce, baked sweet potato, you name it. Giving applesauce or oatmeal, I will add a mashed banana. I think if these concoctions existed in a store it would be too expensive for me to buy. So far he's regained 5 lbs. Still terminal, but not starving without accommodations for his chewing/swallowing issues.

**Aspiration - I think there would eventually be some coughing (to clear your DH's lungs) and a fever due to infection because of the foreign object in lungs and the body's trying to reject it. Even if just inhaling his own saliva. HERE is an article on this. It mentions some meds causing sedation may slow the swallowing reflex and I know many of our LOs take something for behaviors that can also cause some sedation. It also says hoarseness or gurgling noise after swallowing, is a symptom of aspiration.

So many ways this disease takes its toll. I am just wanting not to drop the ball on my DH, with something like this. So, I've adjusted. Even our St. Pat's day boiled dinner went in the blender - corned beef, cabbage, potatoes, and carrots went on my plate as usual and his plate went in to the blender. He loved his bowl of terra cotta colored thick pureed soup 🙃

https://hign.org/consultgeri/try-this-series/preventing-aspiration-older-adults-dysphagia

ImMaggieMae

@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

@ButterflyWings ,@ImMaggieMae ,

Thank you both so much for the helpful information and suggestions. I’m thinking I need to go ahead and get a blender, and try to see if he will drink some nutritional smoothies , as well as be prepared for when I need to purée his foods. The hospice NP and nurse were here again yesterday. They really seem to think he will continue to decline and only has 6-12 months. I’m still very much struggling with accepting that because I don’t know how they can predict that. He is mostly stage 6 I think, and he sleeps a lot , but then has long awake times , he has urinary incontinence, trouble walking, lots of confusion etc, but does still talk. Though most of what he says is incorrect and confusing, he does talk and you can understand what he says, even though it’s not accurate or relevant etc. They said his speech will probably be impacted soon, making it hard for him to talk. He has definitely lost weight. I guess I’m stuck in the mindset that occasional swallowing problems, slow chewing, eating less , not wanting to take his pills etc. aren’t quite signs of “ the end “. So hard to know and to know what to tell our adult children, family, friends etc. In the meantime, I’m keeping him on the meds that matter most, getting them down as best I can, feeding him as best I can, and hoping for as much quality time left as possible.

if anyone has any experiences with how all of this has played out for them, especially if hospice gave them a timeline, I would appreciate any information you want to share.

Thanks everyone for all of the good information and advice. Sending hugs and prayers to everyone as you care for your loved ones.

SBL83

midge333

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.

SBL83

@midge333 Thank you so much. I appreciate your response and sympathy.