hand feed DH or not

Marie58

This is hard, but posting my real thoughts and feelings and struggles. No judgement please on me or other posters.

DH and I never discussed hand feeding. Who knew when we were young, healthy and able to have a conversation about it, that it was in our future. Artificial feeding by tube? Yeah, we discussed that and won't be going there.

A little background: DH has been bedbound for a year this month. He's in MC and on hospice. He has a DNR and comfort measures only on his POLST. He hasn't spoken for about 3 years. He's late stage 7. Since being bedbound he's been hand fed. He doesn't hold any food or utensils. He doesn't hold a cup but will drink through a straw when it's offered. He has slightly thickened liquids as of a couple months ago as he was coughing on water, juice, etc. He chews and swallows fine for the most part, although we've adjusted his diet and cut things up really small. He's definitely eating less and sometimes barely opens his mouth. We watch for signs that he's done, and never offer food if his eyes are closed, and we stop when we see signs that he's done. 

So, what's the right thing to do here. I can't imagine not feeding him but on the other hand, he's not eating on his own and by his choice, if that makes sense. He's just existing, with others doing everything for him. I'm a wreck having watched him like this for a full year. I'm just starting to question what we're doing for him. I know he wouldn't want to live like this, but here we are. You can bet I'm putting my wishes in writing so I don't end up like this, putting my kids through it. Fortunately, our son and DIL have discussed this while they can but sad they're watching it with DH.

I need advice, thoughts, stories of experience...thanks in advance.

dayn2nite2

I think what you’re doing (letting him give the signals) is absolutely appropriate.  Not force-feeding, but offering and if he accepts okay and if he doesn’t, that is okay too.  I also think closed eyes wouldn’t signal to me that he’s hungry.  It all sounds fine.

zauberflote

Marie, zero judgements here!!  I too think you are doing the right thing. He can still let you know he's interested in the food. My mom was in a MC which had a large table of hand-fed residents. Some of the helped out, some of them couldn't help but ate plenty-- the caregivers were like octopi with multiple spoons going at once. Toward the end, when I'd visit Mom, I'd feed her. Sometimes she'd try sooooo hard to get a utensil to the food, but would miss the mark by just an inch every time, so accepted help easily. MIL had the same problem-- she would be wanting to eat but missed that food by an inch every time. I thought it was her severe macular degeneration, but when Mom did it too.....

So I expect I'd want hand feeding if I simply couldn't do the food actions. Both of my mothers made very clear when food was no longer wanted. 

Marie58

zauberflote, what were some of the signs? Sometimes I think he opens his mouth as a reflex vs hunger.

Ed1937

I think hand feeding is fine if he wants it. When my MIL was in late stage, she just refused to eat, essentially starving herself to death. She was on hospice.

Jo C.

We also did the same with oral feedings; in fact, Hospice supported hand feeding to be done the patient wanted to eat food and to not force it if it was refused in one way or another.

You are doing the right thing as evidenced by your LO continuing to eat at times when food is offered.   You are not forcing the food, so you are on the right path with this.

J.

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Jeff86

Judgment free zone here!

My DW is ‘only’ late stage 6 but has needed to be hand fed for three years now.   She never expresses a desire for food, and has lost a lot of weight, but receives/eats food that’s offered—mostly.  At times, she doesn’t open her mouth very much, and tries to sip whatever is on the fork or spoon…so food is cut up very small or soups/liquids are substituted.  

Sometimes when we are feeding her, she closes her eyes.  Sometimes it means she’s done, sometimes not—it’s just a pause.  (Sometimes she closes her eyes when we are talking, and my sense is it’s just become too much for her to process.).  Needless to say, it’s a really slow process—a significant part of waking hours are spent on feeding.

I appreciate well that your DH’s life is reduced to so little.  I agree with other comments that hand feeding him when he is still accepting food makes sense to do/continue.   When/if he refuses, it’s a different story.

June45

Marie,

My experience: When my husband became bed bound this past April after breaking his hip, I had to hand him soft foods. He readily ate the food for a couple of months and then at about the second week of June he began to pocket the food in his mouth and would often spit it out.  If he swallowed, he would cough a lot which meant that he was probably aspirating his food. Shortly after that, he started to reject food completely. The hospice advised me to stop feeding him because it was doing more harm than good. I then used mouth sponges to get a little moisture in his mouth until I saw that was creating problems with aspiration. Not long after that he passed on June 21

Check with your hospice nurse/doctor but this is what I was told:  If your loved one is taking in food without any of the signs that I described above, he would starve if you stopped food and that could be painful.  But when the body starts to shut down, and food is refused, it can cause some pain/discomfort to force food.

ThisLife

No judgement here. My H and I cared for FIL for nearly three years, most of the time in AL The hand feeding issue came on very quickly and ended rapidly in 2002. Dementia diagnosis, independent ADLs, and conversational. He developed UTI and was hospiltialized on Dec 24, 2001.  After two days I noticed he was not eating the food that was provided. I went twice a day to feed him. He opened his mouth and ate. Then started eating less and less, turning his head away. I brought milkshakes which he liked. That lasted a few days and then they were refused. 

He was moved to rehab. Staff there tried to feed him. Turned his head away. After three days the recommendation was to move him to hospice and comfort care. He was gone by Jan 9th. His progression was saying no, to grunting displeasure, to turning his head away, to not being aware. 

My preference for myself is no hand feeding unless I ask for or indicate interest in food. I don't want to continually be offered food in the hopes I might eat. However, just one person's desire.

elainechem

I don't think that hand feeding constitutes an extraordinary measure. I know people with physical disabilities who cannot feed themselves, but that doesn't mean it's time for them to die. 

When people are starting the dying process, they generally begin to have trouble swallowing food and drink. That's a clear sign that it's nearing the time. My hubby began to turn his head away when I offered him a drink or pureed food. That is also very common in people who are near death. 

My mother died of cancer. She had a g-tube inserted six months prior to her death because she wasn't able to eat enough, but she was still hungry. As she came closer to death, they would put liquid nutrition into her tube, but it started to come up out of her mouth, so they had to continually reduce the amount that they fed her. At the very end, they only gave her a little water with her meds. Her stomach just became less able to digest nutrients. Her body was clearly saying that her end was near. 

So, basically, I think that, if they are still able to eat and drink, then it would be inhumane to withhold it. He will signal when he can no longer do it. 

harshedbuzz

Marie-

I am so sorry for the place in which you and your DH find yourselves.

What I know about handfeeding comes as the result of my auntie whose end-of-life sounds very similar. She was in late stage 7 for a few years and would go through periods where she would refuse food for a week or so and then go back to taking something by mouth. The routine was to continue to offer so long as she was conscious and still swallowing. Her SNF did not consider this an extraordinary measure and had a table of similar residents in their gerichairs being fed at each meal. My auntie's guardian (her younger sister) came (or hired someone to come) at lunchtime to make sure she had the time to eat as much as she would consume as auntie could take an hour to feed even a small portion of something she liked. 

Or all of the aspects of caregiving and responsibilities of POA, this handfeeding responsibility was the most difficult part of the journey. I feel like my aunt suffered real trauma around it. It bothered her so much, that when she re-wrote her own advanced directives, she specifically included "no handfeeding" under any circumstances. She told me that her CELA told her it had to be included by her in order to absolve those acting on her behalf of any wrongdoing. I am the backup agent on my aunt's POA/HCD, and she routinely reminds me about this when we speak. 

HB

toolbeltexpert

This is definitely a tough topic. No judgement here.

I am greatful Marie for starting it, and I am greatful for everyone's experiences. I won't know what I'll do till I am there. My dw is a dnr with a few measures, such as an iv for fluid on her polst. I had originally said just comfort measures, I guess I am not ready to let go.

We had a lady from our church who was elderly decide she had had enough. So she stopped eating and drinking. She had visitors, I believe someone was using those moisture sponges but nothing else, i believe it ook around to weeks for her to pass, but nobody who visited thought she was in any pain. 

I did not visit as I was not in the area but I an giving what I have been told by my church family members who did visit.

Stewart sorry about my edit

Paris20

Marie, this is such a difficult and personal decision. My husband is in a skilled nursing facility. He is paralyzed on his right side after suffering a stroke but he can feed himself. He is beyond mid stage AD. During one of my visits he said he didn’t feel like eating so I hand fed him. Later that day I got a phone call telling me DH had Covid. He survived. I never caught it (fully vaccinated and boosted).

Clearly, my husband is not at the stage of your DH. Reading your post, though, started my thinking. What would I do? I honestly don’t know. My guess is I’d do it for awhile, giving me time to think about whether I believe it’s the right thing to do. It is such a complicated situation that a DNR order doesn’t clarify. Your values…religious, cultural, familial…need to play a part but no one else should tell you what is right or wrong because there really is no answer.

zauberflote

Marie58 wrote:

zauberflote, what were some of the signs? Sometimes I think he opens his mouth as a reflex vs hunger.

Marie, Mom was taking food until her last 3 days, and able to communicate with words and expressions. So, if we were in her room and snacking, I'd try to have a finger snack that she could grab one way or another and get a bite out of. With those foods, if it got in her hand it could get close to her mouth. In the last month or so her right arm/hand developed a wild "intentional" tremor, so I could switch the food to the left hand. This didn't work with typical dining room fare, and she was so strongly right-handed that the left may as well have been on Venus in those last times. So in the dining room, we'd sit together, and I'd ask her if she'd like me to help. She'd say or express yes please, and we'd carry on until she said or expressed no thank you. (Yes, her manners never left her-- kudos to my grandparents!) 

She had an episode one Sunday or Monday which could easily have been a stroke, and went to bed soon after. She died that Thursday noontime. No eating during that time-- it was feared she'd choke, as she developed a nasty respiratory something. So her period of not eating before death was very short. 

terei

My mother was clear to me about never wanting to be hand fed.  The last few months of her life, she refused all meds, which we stopped.  The last few weeks, when she was taken to meals, she would fall asleep right into her food.  I told them to let her sleep + not wake her for meals.

About 3 weeks before she died, the MC told me they were going to hand feed her + I was clear that I did not want that to happen because of her wishes.  They were adamant + I worked with hospice on a plan to move my mom to my daughter’s which was about a mile away.  A week before she died, she was sleeping more than 20 hours a day.  I moved in with her at the MC to oversee her care.  I offered her water when she was awake.  I did not offer food.   She was not walking or attempting to leave her bed.

The day before she was to be moved to my daughter’s, she died.

There were employees at the MC who thought that I ‘starved my mom to death’.   Tough.  I knew what she wanted + I watched too many residents there in wheelchairs being hand fed to keep them alive even though they did not have any awareness of their surroundings + could barely sit upright.  My mom did not want to be kept alive with zero quality of life + I followed her wishes.   I also have instructions in my own POLST that specifically refuse hand feeding if I cannot feed myself.  

Marie58

Thanks everyone for your replies. I appreciate the support and it gives me a lot to think about. We have a meeting tomorrow with hospice and the MC staff to talk about this. The hospice social worker already mentioned in passing that not feeding him at this point could be considered neglect, and I get that. I don't want to hasten DH's death, but I don't want to prolong things either.

Another thing I'm going to bring up is pureed food. I know some of your LOs had/have that. I'm curious where that falls on the spectrum of complete independent eating through tube feeding. I haven't made a decision about that yet, and I'm going to see if not pureeing food is even an option. I have told MC staff that I don't want them to do that without talking to me first. Tough stuff for sure.

Blessings everyone.

Battlebuddy

   Marie, I think our husbands are in very similar spots. And I definitely feel for you and all your going through. My husband has been bedbound and hand fed for a year and 3 months. I found that first year anniversary made me question what we are doing now. Very hard emotionally. There was no one around to explain to me what a year of Hospice does to one. I spend a whole year thinking death was eminent and feeling all the emotions of that

   The questions you are asking , and the things you are thinking about, are things I’m thinking about here.  My husband has been sleeping pretty much around the clock and only wakes to eat. His only “ activity” is eating. He still eats well, but like you I wonder if it’s a reflex. He does enjoy the food I think but doesn’t say anything about it. He does open his mouth when the food comes near his mouth, and I take that as interest. 

   He has lost weight in the last couple months. He now sleeps through lunch. So he is eating two good meals a day. But I no longer wake him to eat. The Hospice nurse said “He is choosing sleep over food” Im not sure if the weight loss is from dropping lunch or just progression. 

  As far as what I’m feeding him , it would be considered soft foods. If I make soup I even mash it some so it’s soft. The food looks and tastes the same. I’ve thought about pureeing his food, and don’t want to do it. I think if he looses the ability to eat solid food I don’t want to replace it with a liquid diet. He has a directive that says no feeding tube. I’ve been told endure is basically what they put in feeding tubes. So I can understand you bringing up that question. I will try not to have him kept alive just on ensure. But I’m not there yet so let’s see what happens. 

   I’m sorry you are in this part of the journey. Im right there with you 

     

    

jfkoc

Also check out baby food...it has come a long way toward tasty.

Lills

My DH died 6 months ago and I remember every minute of his illness...

He was bedbound, couldn't hold utensils, couldn't talk, couldn't eat solid foods, etc.  I gave him baby food for about 3 months.  He could still drink through a straw until about a week before he died. Mornings he drank a lot but by evening, he didn't seem to understand HOW to use a straw.  I spoon fed him juice as much as I could.  

He was the one who decided not to eat or drink--and I didn't push it on him.  I knew it was the end.  

JoseyWales

I honestly had never thought of NOT hand feeding once we got there. This thread has been very thought provoking for me.

DH hasn't really been able to feed himself for 6-7 months. But he enjoys eating, and usually eats his entire meal. He can still chew, and we're not on soft foods yet. 

There's a whole table of residents at my husband's MC that get fed by staff.