(Vent) feeding her!

oehlsena

For the past two months or so I've been handfeeding LO every meal because she has gotten to where she just can't seem to feed herself and does not drink anything herself either. She has actually been totally still the majority of the time almost as though she is paralyzed but she can walk slowly with assistance. This was a very abrupt change and I can't pinpoint exactly when it happened but it is very noticeable. 

So, what I wanted to vent about to you guys and gals is that feeding her has just become a chore. I have been doing mostly wet and soft foods now but she used to eat a wider range of food when she was still feeding herself. It is very satisfying when she will eat her meals and it is very unsatisfying when she will not. Eggs and omelets in the morning she seems to really like.... but it can all be a struggle. It feels as though I have to tell her 100 times every meal to open her mouth. Then there is the issue where she opens her mouth a little bit but not enough to put food in. She sometimes spits it out and it also can be difficult to get her to drink water. For the past three or four days I've tried using a finger to open her mouth wider to put food in but she either doesn't notice it  hates it. Sometimes she just sits there with the food in her mouth and I press upward on her jaw to try to get her going on chewing... For me it is just sketchy territory. I mean opening her mouth for her? Helping her chew her food? What's next? Besides that, it feels like I do EVERYTHING for her. I mean, bathe her, wipe her butt, make her food, change her diapers... I just feel like I'm really losing her and I'm not sure whether I'm more concerned about losing her or her hanging on to life! Sad to admit!

Like having a life sized doll! I love her but man this is really pushing the limits for me! Not sure how to proceed from here because I've sure got a life outside of taking care of her and I can never tell if meals will take 20 minutes to feed her or if for her next meal she will be totally unable to swallow (hasn't happened yet). I don't want to see her lose any weight either. She barely weighed 100 pounds (103) at her last appointment and she used to look as though she weighed 200 (the weight loss happened before she was in my care). 

I don't know how to set boundaries and maybe there isn't any way to do in this situation. I never thought we would be ones to go on hospice (she and her son have both been health fanatics). I thought she would slip away in her sleep or maybe fall and break something too important to break. Now I see her slipping away every day, at every meal that I can't get her to eat. I can't hardly express the rage, yes rage, frustration, and hurt I feel when I can't get her to open her mouth or even her eyes for a meal. 

I know you guys understand! Much love and peace! 

mommyandme (m&m)

I do understand! I’m sorry for these struggles for you.  

My mom still wants to eat yet we’re to the point of finger foods.  I want her to do as much as she can herself for as long as she can.  The utensils seem to be foreign to her most of the time now.  I leave a fork or spoon (not both, that’s way beyond her) on her plate but lately I often just take it away because she’s confused by it.  I do have to offer her water and more than not she opens her mouth in such a weird way that I can’t give her the drink.  I just set the cup down and move on. It is frustrating.  

Hospice could be very helpful, even if the CNA comes in a couple of times a week at meal times to give you a break with the worry and frustration.  I’ve got to have help because I get very depressed hanging out with her all the time, being her activity and meal planner, besides her personal hygiene manager.  It is very hard to watch the daily decline.  One of our helpers asked me the other afternoon “what’s for dinner?”  She knows what is in the kitchen for mom and I said “that’s one reason you’re here, so I don’t have to think about that right now”.  

If your mom’s evaluated by hospice and they admit her, take advantage of all the services they offer.  If nothing else,  they’ll provide the diaper supplies.  Since my mom is “stable” …”not terminal” right now they’ve discharged her.  She has declined since they left, with the finger food issue but its practical care that’s needed, not medical care.  Give hospice a call, it can’t hurt.  

Thanks for sharing your trials, I hope you can feel some peace today.  

terei

My family is very open with each other how we want to ‘end’.  One thing we have discussed is what happens when you cant feed yourself any longer.

My mom was clear with me that if she could not feed herself, she did not want to be fed like a baby.  (I have a ‘no hand feeding’ in my own medical directive)

Mom was sleeping many hours, taking no meds(she had started refusing them all) + on hospice. The facility was waking her up at mealtimes, taking her to meals in a wheelchair (

where she would fall asleep into her plate half the time) She was mostly nonverbal + stopped picking up food with her hands to eat.

I met with the management + told them to quit waking her up + let her sleep.  They told me they were going to start hand feeding her + I said ‘NO YOU ARE NOT’.  Hospice agreed with me, but the facility would not agree not to hand feed.  I moved into her room + was making arrangements to have her transferred to my daughter’s home where she would be treated in the manner she expressed to me. She died the day before she was to be moved

In years past, it was not uncommon to treat PWD with feeding tubes.  This has shown to be ineffective.   I think ‘hand feeding’ will go they way of this also.  If a person is clear they want to eat, that is one thing, but it is my opinion hand feeding is (in most cases) extending a very poor quality of life that the PWD would not want for themselves or their families.

May flowers

 oehlsena, I am sorry you are going through this. We are in the same boat with hand feeding as well as the other tasks, except my FIL can no longer walk or support any weight (his legs have contracted) He can sometimes feed himself a few bites of finger foods, about once a day, but it is going away more and more. I totally get what you are saying about a life sized doll, especially when they become a dead weight and are communicating less and less. 

When we feed him, it is difficult to get him to open his mouth. Much of the time, he tries to suck on the food instead of opening his mouth. Then we have to remind him to chew, then swallow. Offering him sips of water or tea (thickened) every few bites seems to keep him focused on eating, and reminds him to swallow. Sometimes, I will put his hand on top of mine, the one holding the spoon, and then he raises his hand with mine to his mouth. For a while, it kind of jumpstarted the eating routine for him (muscle memory?) and sometimes he would take over by bringing my hand with the spoon to his mouth. 

It takes us at least an hour to get through a small meal (all soft foods)

We never try to pry or force food into his mouth. When he clinches his teeth or lips shut, or won’t open his mouth after asking a few times, we take it as a sign that he doesn’t want to eat and to leave it alone. We wait and offer again later. If they can’t or won’t open their mouth, they are likely to refuse or forget how to swallow, and then you run a risk of aspiration pneumonia.  

My caregivers really have a hard time with this - I have told them to offer food but if he refuses then leave it. They seem to feel they are not doing their job if he’s not eating.  

What it boils down to is he is losing the concept of eating/chewing/swallowing. My FIL is losing a ton of weight right now too. I have wished for a while now for an easier means of transitioning than something like this. I feel like I am fighting a losing battle, and it is hard to know what the line is between pushing food and offering food. I really don’t know. 

I do know that we no longer wake him to eat. We just offer as much nutrition as he seems interested in when he is awake. 

Do you have hospice involved? They are an amazing support during all this. They get exactly where you are in this. 

harshedbuzz

oehlsena-

I am really worried about this situation. Worried for your LO? Yes. But more so for you. 

As I recall, this person is not a relative of yours with whom you have lifelong connection-- is she the mother of a boyfriend? And you are her sole care provider? You sound dangerously burned out.

Some thoughts. 

I'm not sure what you mean about the notion of boundaries in this situation. I do hope you aren't referring to the PWD. Trying to institute boundaries with someone whose brain is as compromised as hers is nonsense. If there are to be boundaries, they should be with her family members stepping in to cover at least one meal daily and/or all meals on their day off.

Stop trying to open her mouth. At best you are going to be bitten, at worst you could damage teeth, dislocate her jaw or fracture an old brittle jaw. You really don't want to be in the ER answering questions about how this happened.

It sounds like she's reached a point where her swallow reflex is unreliable. I would strong urge you to bring in a SLP trained in feeding to assess her and make recommendations. Putting food in the mouth of a person who cannot swallow is dangerous because it can lead to aspiration pneumonia which can be fatal. My dad was silently aspirating-- maybe food, maybe even saliva. We became concerned (he was in a facility: "we" was me and his daily caregivers), got the SLP assessment, bloodwork and X-ray completed same day and he was dead before midnight. 

I would also consider bringing in hospice today. I don't know why you think you would avoid hospice based on healthy choices or why avoiding hospice would be a positive thing. Dementia is a fatal condition. It only ever ends one way.

The nurses from hospice can offer tips on managing feeding/liquids during this time as well as ways to keep her comfortable. They can also provide supplies, equipment, education and bed baths to make your task easier. 

Please take care of yourself.

HB

oehlsena

Harshedbuzz

I really appreciate your concern because it has felt like a lonely battle at times! I really think that is good advice. I have never been in a situation like this and it is overwhelming to me which I'm not so good at communicating to those around me. I feel like extended family is detaching from the situation. My husband leaves mostly all of the hands on care to me and I THOUGHT that I could handle it. Little did I know how mentally and emotionally draining it can be especially with condition going downhill. Always wondering if I do enough. We had an issue with our medicaid application when we moved states and have been pushing to get accepted for medicaid all summer. We finally got notification of accepted this past week and immediately got our referral to home based care services. Now I have just been trying to get thru to them but no answer so far. One missed call back. We definitely need some help from someone with experience with this because to be honest I know this situation is scary for both of us.... but as of the moment I will definitely stop pushing food at her, opening her mouth, and watch out for asphyxiation on  food. Thank you for your reply!