My Mom refuses to eat, drink, ANYTHING

cejayb

Tim, My mum [yes I'm a Kiwi/Pom!] moved from a facility where she was very happy to a hospital care situation when she deteriorated and needed the extra care. She did not want to eat...or be bothered with anyone really...and a month later she died in her sleep. I was with her during that last day and she had tried to eat something for me, she did not know me but would react to my name, but I really felt that I was trying to get her to do something that she didn't want. I believed that she had decided that enough was enough. For me...feeding tubes etc...never. I would not have put her through that. Stay strong.
Ce

kenbob71

Tim, sorry to hear about your Mum.

The choking and coughing is normal toward the end right before their bodies just don't even know what to do with food / water. It's a sign that their body is starting to shut down.

It's not pretty, and you don't want them to suffer but it's just part of something you cannot change or stop.

I congratulate you for your no feeding tube decision. It's a very difficult personal decision, and it's a very hard thing to come to terms with, (however, I do respect those who WANT to do the tubes.) Thankfully, my wife and I had had that discussion several years ago, before she had any signs of illness (she died last March at 53 years of age). So I had peace with what I knew she wanted done. And it really would not have added much time in her case, and absolutely NO quality of life. We just kept her comfortable and hydrated as best we could, and let her go peacefully. And I am a peace with that decision.

Best of luck, and please keep coming here for support. This is a great group. K

TC08

Welcome Tim so sorry for all that you are facing. I also applaud how you and your siblings are handling these difficult end of life choices. I've been bedside with two grandparents at their passing - one where IVs and feeding tubes were given, one where they were not. I'll never forget the doctor on rounds at the hospital pulling my sister and I aside and asking us to make a decision about our grandfather. He just flat out told us that the feeding tube wasn't doing any good and that it was actually making it harder for our grandfather to pass more easily.

My sister and I looked at eachother and reached for the phone to call our stepdad and mom to get them to the hospital to make that decision. I always believe that life is our teacher. Going through that with my grandparents has prepared me for going through this process with my folks. Now it's my stepdad who is ill (frontal temporal lobe dementia), I am the durable POA, I had to fill out the forms like DGab, and I'll be the one to make that call when and if that call needs to be made.

Hope you'll stay with us here on this board Tim. I have found such support here it's really quite remarkable. Nothing like being able to share with those who are walking (or have walked) a mile in those mocassins

Martha H

My family also opted out of feeding tubes in accordance with my Mom's own wishes expressed years earlier.

She began to have problems swallowing 9 months before death. She choked on food or water. The nursing home gave her pureed food and thickened liquids to make it easier to swallow without aspirating food into her lungs. It helped some. Eventually she lost all interest in eating and drinking. She lost a lot of weight; in the end she weighed 75 pounds and looked terribly gaunt. Her normal weight had been 120.

I still think it was right not to force a feeding tube into her. Mom never seemed distressed or hungry or thirsty. As Ken said, her body slowy shut down as it prepared itself for death.

You are dong the right thing for your Mum!

Love,

Martha

polina

Tim
About a year prior to my mom passing away her appetite change a lot. My dad used to try to force her to eat like he ate. I had to repeatdly tell him dad she does not want it... she cannot eat like you or I do anymore. She seemed to like cereal oatmeal omelettes soft bland things. Meanwhile my dad wanted her to be eating things like a big hearty steak.....

When she was in the facility 4 months prior to her death she mostly only ate a good breaksfast everyday. Once again it was the cereal scrambled egg oatmeal type of foods she wanted.

About a month before she passed she wasn't eating hardly anything. I would go in and try to feed her. When I noticed about two weeks prior to her death she no longer was even eating her breakfast the cereal scrambled eggs etc I knew her body was shutting down and it turned out I was right as she passed away shortly after.

love pauline

Tim280471

Deb, Cejay, Tc, Ken, Polina thank you all so much for taking the trouble to reply to/comment on my post, your opinions are all a source of comfort at this time.

Went to see Mum today (4th Jan), another major effort to get even 170mls of thickened liquid/puree into her during my 3 and a half hour visit. It is a real cruel situation to be put in. Do I continue on making the effort to get her to intake as long as she swallows, hoping something else may grant a quick merciful end, or slowly watch her dehydrate to death of her own accord?

What a choice eh?

To be honest, the only way one could get enough fluids to be considered properly adequate into Mum's body would be to be at her bedside 24/7. Which is probably impossible for most people of course. As I've said previously, she is averaging 200-300mls total intake at the moment, though she had a comparatively good day at the weekend when she took in (a whopping) 700mls. Me and my sister are visiting seperately & daily.

It doesnt help your own conscience though when, in spite of being recorded as being "awake in bed" since 9am, only 40mls of fluid has been put in by the NH staff by the time you visit at 1pm. Then again, you also similarly recognise that you are ultimately fighting a futile battle that you or the nursing home arent going to win in any case, maybe only prolong.

She was in pain last Friday (1st Jan) clutching her top left hand side and she actually yelled out "Somebody kill me". But then she yelled out not long after "I dont want to die" (or what sounded very much like this to me) So, after alerting the nurses to her pain, I decided to seize upon what I perceived to be a (now) very rare moment of lucidity from Mum:

I looked straight into her eyes and I asked loudly and very clearly: "Do you want to die? Are you in pain? Do you want to die?" ..and in typically defiant fashion, she replied "YOU DO NOT!"

..which one of course would take as meaning "no I dont want to die". But can one really be 100% sure at this stage?

In any case, for the sake of my own conscience, ill plod on for now, raising a glass to her lips for the three hours a day I am there, until its completely obvious (even to me) that she's had enough, whilst hoping and praying for a merciful end when it comes.

Once again, thank you all for your responses & a happy 2010 to all

meg1230

Tim..

I am so sorry for what you are dealing with..it is an awful situation. I hope I have the courage in the end when it is my turn to do what my mom would want. You think you know what to do then you start to second guess your self. It is hard to let them go.

I will keep you in my prayers.

Love, Meg

kenbob71

Tim, my friend. You are doing the best you can in a no-win battle. Sounds like her body is shutting down, and I'm sure a lot of what she says is from past memory. I doubt that she is really having any conscious / meaningful thoughts. I know that doesn't make it any easier on you to hear her saying things like that. Actually, I'm shocked that she is still saying anything at all.

I pray peace for you and your family and your mom. And just know when she is gone, that you did your best for her. And you should have no guilt or regrets.

Keep in touch. K

Gabriel

Tim, even if she had a lucid moment she might have just been mimicking what you said to her. The fact that she used "YOU" instead of "I" would indicate such. Amazingly 170 ml will sustain for a while. It doesn't take a lot of food to sustain.... if the body is processing. And as said before it is the liquid that is necessary and that she is getting in the puree. She will last longer than you expect on a minimal amount of food.

As long as she is not aspirating then continue to do what you must. There is nobody you have to answer to in the end... but yourself. So do whatever is right for you.

You also need to think about the fact that not only do you take more one on one time with Mom to make sure she take in food.... she may take it from you before she will others. You are a familiar face that she knows. Her brain may not give her your name or relationship but it tells her this is somebody that cares about her and loves her.... so the effort she makes may be more for you than staff members. The last two days Dad refused to get up for staff members but the minute I walked he got up

Hang in there I am praying for an easy quiet end for the both of you...

Love, deb

Martha H

My thoughts and prayers are with you too, Tim. Lost my Mom the same way 2 years ago.

Love,

Martha

texaslily

Tim you and I are in the same boat. My MIL is hardly eating or drinking. One of the things I've been doing is when she is awake and laying there put my finger over the straw telling her to take a drink then let the liquid in the straw very slowly out into her mouth. It is so hard to see someone that use to REALLy love food go to this. My thoughts and prayers go out to you.

Tim280471

Thank you all once again for your kind words

Hi Texaslily, thats an interesting technique. I myself have been using food pouches (with nozzles) and squirting pureed liquids/juices into Mum's mouth every so often. Managed to get 245ml into mum today in three hours, she also had a couple of spoons of dinner and ten teaspoons of melted ice cream off a spoon. Amazing by recent standards. At this rate, I think I will have to buy her a bigger nightdress

---------------------------

Mum had 605mls yesterday in total according to the NH log sheets, so I think my fears about the home staff not being very keen to prompt intake are maybe - at least in part - unwarranted which is good news & very reassuring for me in my absence.

Mum is obviously not in a good way at the moment, but did smile and laugh & make eye contact on brief occassions today and also "talked" on and off for an hour or so (with the very odd word/phrase in English) and as a result I am fast coming to the conclusion the doctor was a little bit too keen to totally write her off within two weeks when he saw her on Christmas Day.

In fairness, when the Doctor saw her at the NH & gave his prognosis, she had only been out of Hospital for 24 hours having spent 4 days in there on IV's and according to the NH manageress, it has since transpired Hospital had discharged her having declared her "fit" when this evidently wasnt the case.

So, anyway, I went along with the Doctors prognosis, when he visited on Christmas Day evening he looked at Mum's catheter bag and there was absolutely nothing in it, and she didnt look too good either to be fair at that point, so he must have concluded that total dehydration was imminent. He actually checked her hydration at the time and said "she's slightly dehydrated" so why did hospital discharge her 24 hours previously if that was still the case? Yes, the British National Health Service is a wonderful institution, but they possibly discriminate against patients with Dementia as lost causes, so do the absolute minimum required for them it seems, to free up beds

I know this much, she will NOT be going back to Hospital, we are keeping her in the relative serenity of her room at the NH & concentrating on giving her plenty of TLC and keeping her relatively hydrated/nutrified solely via oral intake during this final phase.

Regards & peace to all

Tim

Gabriel

I am sure you are pleased that she seems to have rallied It sounds like you have a good nursing staff taking care of your Mom and that can make a huge difference. Hang in there and know we are all with you...

Love, deb