Stage 7 - Difficulty Swallowing & Diet Modifications

Nita I’m very sorry. This creates tough decisions.

When someone swallows and things in back of throat area of don’t work as they should the food enters the airway and that causes you to cough. The food eventually is probably going to wind up in the lungs. This then will lead to pneumonia. So I guess my thought process is you’re really not changing his diet. You’re just fixing it in a manner that hopefully it won’t go into his lungs and cause pneumonia. If your husband would get aspiration pneumonia and you don’t treat it, they’re going to become very short of breath, and that leads to other decisions regarding antibiotics, etc. from what you wrote, I gather you probably would not want that either. Sometimes things get bad enough that that thickening the food etc. doesn’t help and so then it sounds like that your husband’s already made the decision that he doesn’t want a feeding tube which would be what the answer would be for that situation.

As I say, sometimes, there is no right or wrong answer. It’s just sort of whatever you’re the most comfortable with.

As far as I can tell you did not mention if he is on hospice. If he is not on hospice, something that you could think about is getting him on hospice if possible, and they’re usually very good at helping you with these kinds of decisions because they deal with it all the time, just a thought.

What a difficult place to be. I am so sorry.

If they are willing, a conversation with the hospice folks could be helpful to you. When my FIL reached this stage, his family decided to stop feeding him and giving him water and to simply make him as comfortable as they could until he passed. They were at peace with this decision, which I think is likely the most important part of any of these difficult decisions. Can you find the one where you feel at most peace?

They already knew, btw, that his passing from lack of food and liquids would not be terribly painful for him. One of their aunts had ALS and she asked her doctor how she could hasten her own death. He told her to stop eating and drinking water, which she did. She passed away about 10 days later.

My FIL had dementia. He ended up in the hospital with a UTI in 2003. When he quit eating from the tray that was brought, we hand fed him. After a few days he would not open his mouth. He was transferred to rehab. I knew he liked milk shakes, so I brought them for a few meals. I put the straw in his mouth, and he eat all, then some, and finally would not take the shake. We quit feeding him. I think he passed in a week. I don't think there was any knowledge about all of the feeding options back then. No one mentioned aspiration and pneumonia. I took him turning his head away when I tried to feed him as his wish to stop food. I do agree that whatever decision you make, it needs to be one you are at peace with.

My father was in MC for two years. In his final weeks, he ceased eating. His mind could no longer instruct the body how to taken in or digest food. At that stage, hunger and thirst are not felt. He passed peacefully and quietly.

Similar to @2parents/brain change 's FIL, my 92 yo husband has dysphagia in addition to ALZ (Stage 6), congestive heart failure, repeated UTIs, and a stroke last summer affecting speech/language and swallowing. He was in hospital/rehab most of November due to a serious fall resulting in broken ribs, internal bleeding and fluid around the lungs, and fought off pneumonia and an entrenched drug-resistant UTI. He is currently in AL. His food is pureed, and he eats very little. Despite precautions he aspirates liquids, including his own saliva and nasal drainage. He will eventually become unable to swallow. His advance directive specifies no feeding tube. He is in hospice care and will not be hospitalized if at all possible. He will be allowed to leave this world as peacefully as possible when his time comes.

@2parents/brain change , should your FIL return to MC, ask the staff to not allow any outside food to be brought in. If your FIL is not already under hospice care, I respectfully ask that you and your family consider it.

@Nita K It sound like your DH should already be on pureed foods to prevent the coughing and aspirating that are occurring. You are not prolonging his suffering, you are providing for his comfort. I have found that hospice personnel can be a great help in explaining the process that your DH is going through and can help guide you through this and other difficult upcoming decisions.

We went through this with my MIL. Discussions with hospice led us to giving her water only. She had stopped eating even when attempting to spoon feed. It was a good decision for the family.

There are a lot of moving pieces to your question. But no easy answers.

I consider changing the texture of food and drink to be akin to any other safety measure. I mean, we probably could have skipped all of stage 6 if we'd allowed dad to drive or manage his own medication. My dad was able to self-feed until the end with very little accommodation surrounding food. He had an SLP come to the MCF and do a feeding evaluation and we agreed to take steps to mitigate the risks for aspiration while balancing dad's enjoyment of food. She banned eating lying down, straws for unthickened liquids, sippy cups, sports bottles, mixed textures (chunky soups, cereal & milk, etc) and encouraged us/caregivers to prompt swallowing when he developed a "rattle". She also warned me that however careful caregivers are with feeding, a PWD can aspirate silently their own saliva and develop pneumonia.

Dad died hours after we saw the SLP. The next day and X-ray and bloodwork came back confirming aspiration pneumonia as a primary cause of death along with Alzheimer's. I had spent a couple hours with him that day as he got his X-ray and saw the SLP. I brought him Chik-Fil-A. He told me all about a visit he'd had from my (late) sister and extracted a promise to bring a car he could use from me. The discussion of my sister spooked me, but however sick dad was he didn't appear to be in much distress. I don't know if that is typical of aspiration pneumonia, but for dad it seemed an answer to our prayers that he did not live to suffer contractures and bedsores as my sister did.

When dad had dementia, my favorite auntie did as well. They seemed to be the yin and yang of the dementia experience. She stayed happy and pleasant right up until she passed while dad was something else entirely. While dad ate fairly normally right up until the end, my aunt went through all the steps of chopped, pureed, thickened and supplemental drinks like Ensure. She was hand fed for at least 2 years. My nutty aunt was her guardian and usually came at lunchtime to feed her; when she couldn't make it, she hired someone so that auntie would have at least one unrushed meal a day. Auntie had had a stroke just before she went into MC which made self-feeding a bit challenging for her. Most of the time, she ate well but slowly. She enjoyed certain foods and could sometimes self-feed a cookie.

She did have 4 episodes over a period of 18 months in which she refused food brought to her mouth. Behavior is communication-- does your DH accept food offered? It was very obvious when feeding auntie whether she was eating because she was hungry or really enjoying something. Her episodes tended to last about a week and then she'd go back to business as usual. During these times, whoever was feeding would offer known favorites but not force it. This was really difficult as family because you'd mentally prepare yourself to lose her while hoping she'd return to her baseline as she had in the past. The last time she didn't eat or drink for about 10 days before passing.

The experience of hand-feeding so traumatized my aunt, that she has included "no hand feeding under any circumstances" in her MOLST (even though she's not terminally ill) and her Advanced Directive. Every time I talk to her, she reminds me of this fact and makes me promise to follow it through even thought I don't believe I am a primary agent.

HB

In my opinion, once a PWD needs help to eat, provision of nutrition (and hydration) becomes a medical intervention. Families have the right to refuse medical interventions. In my opinion, hand feeding a PWD is simply prolonging suffering. I would be conflicted, however, if the patient seemed hungry or appeared to really enjoy the food.

Nita, it sounds like your DH is near the end. I would consult with the hospice providers regarding stopping feeding your DH. Good thoughts to you and your DH.

This is a difficult subject for me. My DW is somewhere in Stage 7, on hospice, and the progression of her dementia (Semantic Dementia) has been very rapid. She is being hand fed, and has been for nearly a year. At first it was just hand feeding her regular food, but has moved through "minced and moist" to puréed, with thickened liquids.

My DW made it very clear, even before our marriage, almost 50 years ago, that she abhorred the idea of being elderly and debilitated, a strong opinion for someone in their early twenties. This makes it hard for me because I know she would hate being like this if she were cognizant of her state. Yet she is only 72, and the medical professionals tell me, seemingly without irony, that despite her dementia she is "otherwise healthy", good heart, lungs, even muscle strength (but little muscle control), this of course is absurd to me.

So her advanced directive is clear that there will be no forced nutrition, defined as intubation. But I do not consider hand feeding forced nutrition, nor does the hospice or her doctor. She readily accepts the food offered to her and eats most or all of it. I do not think that the lack of her ability to understand or maneuver eating utensils should constitute her death sentence, despite the fact that it prolongs her condition. We never discussed such possibilities as it just never occurred to us, we had no one in either of our families that came to this state. So I'll never know if this is the "right" thing to do, but it feels right to me, but hard nonetheless.

I do expect the time will come soon when she will have less and less interest in food, as she sleeps a great deal now. But until she actually declines food that is offered her, I will support her hand feeding.

Thanks everyone. what a confusing time it is and how I appreciate having a space where I can be honest. Out of sorts all day, and now that I have read and responded I can understand why I feel this way.

2parents/brain change

Please forgive me if I sounded uncaring or like I was trying to advocate stopping hand feeding anyone. I would not want people to think I meant that! I only meant that, in my own life only, I would not want someone to feed me if I had lost the ability to feed myself. I do not want to imply that anyone else should choose that path for their loved one. I am incredibly sorry if what I posted caused anyone distress. I value everyone on these boards and know everyone makes the best choices for themselves and their beloved family members. Sending everyone comfort and strength.

Vitruvius. Thank you for this. I agree completely with you and this is the course I will take with my DW.

Housefinch, thank you for making it real. It's what we face.

@RickM Your last comment is so touching. Your wife has been lucky to have you.

In my opinion, if your LO is in hospice, you have the right to curtail or limit hand feeding, especially if they are at risk of aspiration. Further, if you know your LO would not want hand feeding, aren't we under oblIgation to respect their wishes? I would recommend speaking with the hospice providers. I readily accept that I may be wrong.

Re feeding tubes. There is no difference in life expectancy if you chose a feed g tube versus a soft diet.