Stage 7 - Difficulty Swallowing & Diet Modifications
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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.
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That's a tough one and I'm not in that position yet but will be at some point. Very difficult decision and I hope you find the answer but in the end it's what "you" think is best. Dying from pneumonia would be very hard I think but I don't know.
Anyway, I hope you can to a decision that you are at the most peace with if there is any peace at all.
It's dmd if you do and dmd if you don't scenerio it seems.
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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.
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As I have mentioned here many times, my mother was clear to me that she did not want to be ‘fed like a baby’…it horrified her. When she was unable to feed herself, (falling asleep while ‘eating’, putting food in her mouth but not chewing + swallowing etc). I told her facility to quit waking her for meals..to let her sleep. I also said if she is not picking up food to eat, NOT to feed her. Hospice agreed with my decision.
The facility was not being cooperative with me + the family made a plan to move her to one of our homes + I moved into her room til the move was to be made to monitor the situation. Some aides were grumbling that I was ‘starving her to death’. I and hospice kept her clean + comfortable + I wet her mouth with hospice instructions. She died a couple days before the moving day came. I was there about 10 days.
I watched them hand feed a couple of residents there for months, if not years. I was not going to allow that, especially since mom could not stay alert longer than a few minutes at a table in front of a plate of food. I feel I did what I had to to honor my mother’s wishes + my determination to NOT artificially extend her life beyond the time she had any quality of life.
Every situation is unique, but I am at peace with how my mom’s life ended
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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.
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My father in law with dementia, 95 years old, was just taken from Memory Care to Hospital. The memory care center sent him due to a fall. He claims he slid out of bed. At any rate the doctor on call found fluid in the lungs.
Further testing showed the fluid was in Dad's chest cavity pushing on one lung. He has 1 quart of fluid in his chest. He now has congestive heart failure, urinary tract infection and pnemonia.
His memory care does not provide direct nursing service. He went into MC with dysphagia (swallowing disorder), The family was anxious for him to have 'real food' again and I wonder if they pushed it too fast.
Cousins would bring him milk shakes, which as the director explained to family, melt and get too thin.
I feel like I am watching a train wreck in slow motion.
😓
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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.
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Nita, I am sorry you are facing this difficult decision. My DW was in stage 6 for several years, and I always hoped she would be spared the physical ravages of stage 7.
My DW lost the ability to feed herself fairly early in her AD journey, and we hand fed her for several years. We did so because she seemed to enjoy food even if she could no longer use cutlery. It grieved me greatly to see her so infantilized, but so did lots of other losses grieve me greatly.
Last summer, she did develop aspiration pneumonia. That was a somewhat traumatic event—my DW was very short of breath, frightened, and didn’t understand what was happening. She was treated in the hospital, and after she was released she was approved for hospice. A speech therapist conducted a swallow test, and my DW was able again to eat solid food. But I talked with hospice about how we would treat pneumonia if DW contracted it again, and they assured me she could be treated at home and made comfortable.
If puréed food and thickened liquids were recommended, I would have done that. Not to extend her life but to make what life is left as comfortable and pain free as possible. Coughing and choking are uncomfortable of course and I didn’t want my DW to suffer like that.
I did, however, draw the line at a feeding tube, which I would not have done had it come to that
That said, it’s a very individual, personal decision, and given your DH’s indication he didn’t want to live in his current condition you could certainly reach a different conclusion. One thought to guide you is to consider how you will feel when you look back on your decision—as best as you can figure out, what choice will you be able to live with best?
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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.
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Wow! I am going through this same decision with my wife now. She is in MC and was eating regular food but chewing for a very long time before swallowing. She wasn't eating very much. I had read about the problem with aspiration pneumonia, talked with hospice, and we decided to try pureed foods. She continued to eat very little and continued to chew for very long periods of time. I couldn't see much difference in her food intake. The one exception was that she would always eat most of her dessert 😀 which wasn't pureed. Since she has never coughed and still swallows liquids well, and since the pureed food looks and tastes pretty gross I switched the order to mechanically altered food. This hasn't brought about much change either. Yikes! What a dilemma.
I am in the same situation as some of you are or were in. Having assisted with my parents who suffered from dementia my wife and I had talked about at what point we would like to be done (since both of my parents had dementia we figured she would be making this decision for me!). My wife is not on any medications, seems to be comfortable, but is mostly non responsive and does not speak and shows no emotion. She spends most of her time in bed with about 6 hours a day in a reclining wheelchair. Her MC is walking distance from my home and I see her nearly daily. I've "beaten around the bush" a few times telling MC and hospice that we're at that point but haven't reached the point where I've said: "liquids only". She is hand fed, mostly. I've asked them not to pump her up with Ensure. I see others at her MC that have been in a similar state for the entire 8 months my wife has been there. One woman comes in each night to hand feed her mother. I've got friends who's loved ones have spent up to 2 years in a similar state.
This is so hard. I guess all we can do is work with hospice and MC, if you're loved one is there, and try to keep he/she comfortable while honoring their original wishes.
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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
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I had no idea until reading this board that hand feeding even happened in dementia. I completely respect that it’s a personal decision each family must make. I feel strongly that, if I ever get dementia, I don’t want to be hand fed, and will be getting a document signed saying that.
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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.
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I’m pretty sure that I cannot request that the care staff stop hand feeding my DW. She did not specifically mention this in her advance directive. Not sure if they could ethically stop hand feeding even if she had it in AD due to it possibly being considered withholding care. ??
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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.
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All of these experiences with dysphagia are helpful. My FIL two main caretakers are oldest son and oldest daughter. Daughter is most involved, sometimes at the cost of her own marriage and other relationships. FIL recently fell, was taken to ER from MC. Doctor found fluid in lungs. Long story short daughter is reporting FIL had 1 quart of liquid in chest, pushing on lung. Testing revealed congestive heart failure and pneumonia and UTI. FIL was given a choice between food being pureed and tube feeding, and he chose pureed food, so is eligible to go back to MC. Here's the thing, FIL was put on pureed diet months ago when he entered MC. He supposedly 'got better' and went back on food and thickened liquids. ( Family lives on some other planet than reality. ) Daughter reports doctor says the pneumonia was not aspiration pneumonia. This seems totally absurd to me. I am not convinced that is the true situation. But really does it even matter what I think?
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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
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That's kind of where I land. Offering food to an advanced stage PWD is kind of like changing their incontinence products-- care-- something you'd do for a dependent child. This is very different than a feeding tube (which doesn't increase longevity in dementia)which is a medical intervention.
HB
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The user and all related content has been deleted.3
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I believe this is the most fundamental question for PWD at the very end. Many patients die of other causes before reaching this point. But some of us are caught in this dilemma.
Is the PWD capable of understanding their misery at some level, wishing it would end but unable to effectuate it?
I personally think it is more likely the PWD is beyond any cognition of their state. If this is the case, they are by definition not suffering. They are surviving in a “retrogenesis” state as discussed in another thread. Essentially like an infant. In this case, we, their LO, are the only one suffering watching them in a state we know they would hate. But is that a sufficient reason for us to take action to end their life? My personal answer is no, I will wait for the regression to complete its cycle.
Each of us must make their own extremely difficult decision about this. I pity us all.
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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.
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housefinch, I assure you that I took no offense and in return I also hope I offended no one. I was trashing out my rationale for a very difficult decision. I value everyone’s perspective here and hope important issues like this continue to be discussed.
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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.
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One more comment but a little bit "off thread".
I'm thinking that we're at the point where we had talked about being beyond maintaining a "quality of life". Yet I go to see her, put on some music, and just sit in her room, hold her hand and end up being thankful that I can still do that.
What a crazy journey this is.
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@RickM Your last comment is so touching. Your wife has been lucky to have you.
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All I can do is tell you my experiences with my late mother and husband. Mom had brain cancer. It wasn't dissimilar to a fast acting type of dementia. She lapsed into a coma following surgery that was ultimately unsuccessful. The doctor wanted to insert a feeding tube. When she was healthy, she specifically asked NOT to have a tube, but the doctors insisted that she would come out of the coma. She did wake up after three weeks, but she was never the same again. The tube kept her alive for the remaining four months of her life. The alternative would have been to watch her slowly starve to death. I didn't think that was a humane thing to do. After she woke up, she was able to feed herself some food, but they supplemented that with liquid nutrition through the tube. The tube did extend her life for awhile, but most of the time, she was aware and able to talk with us. She didn't start suffering until the cancer grew too big. By then, she was back in a coma due to the brain damage. During those final six weeks, all of her nutrition was through the tube. One day, I was with her and I noticed that some of the liquid was leaking out of her mouth and nose. She wasn't even laying down, she was sitting up. At that point, they began to slowly decrease the amount of liquids that they put through her tube because her stomach wasn't able to absorb it anymore. The final 10 days, she wasn't getting any food or water because her stomach just couldn't take it anymore.
My hubby had EOAD. About three months before he died, he began to have some swallowing issues. It was really weird to me. He was able to swallow perfectly well, he just forget that he should. One morning, he was chewing some scrambled eggs. He kept chewing and chewing, but not swallowing. I finally got him to swallow it by offering him some juice. After that, I pureed all of his food. That worked better because he did swallow it. Just two days before his death, I tried to feed him breakfast and he turned his head away. He did the same when I offered him water. He never ate or drank again.
It appears to me that the body knows when death is near. If a person with severe dementia is still able to eat and drink, then I believe that they should be fed. To do otherwise is inhumane, I believe.
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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.
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I also am in this situation. New to Stage 7, recently moved to pureed food and hand feeding because DH overfills his mouth, then starts choking, coughing and aspirating. I agree that each situation and decision is unique, just as every PWD is different.
To me, hand feeding is not forced nutrition. I am confident that given my DH's anosognosia, he has not comprehended his condition for years. We have clear evidence of that. So, with his significant decline I am sure he has not suddenly gained the capacity to know and regret his current limitations. Just as I would not leave him to sit in a soiled or soaking Depends, being responsive to his need for help when eating, is compassionate and humane.
This all is so hard on the caregivers, and as a spouse/caregiver my heart is being ripped in little pieces with each day that passes. I can only hope to provide him as much comfort as possible. And as he takes in less food naturally, continues to lose the weight that has dropped quickly with the new swallowing and choking issues -- well this nightmare will be over in due time. I'm not rushing it nor delaying it by providing for his minimum daily needs that he can't manage himself (meds, hygiene, nutrition, etc. as other posters have said before.)
I agree with so many here on these points. Care needs still drive my decision making. I didn't let him wander, drive, or cook after it was unsafe and no one argued that it was inappropriate for me to provide the necessary interventions and support. But if you disagree, it is your business and your call for your LO, if you're the POA. No judgement here. To each his own.
Wishing us all and our poor LOs with dementia, some peace in this hellish storm. We are doing the best we can.
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Re feeding tubes. There is no difference in life expectancy if you chose a feed g tube versus a soft diet.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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