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Mom is late stage(hospice evalutated her at stage 7A) dementia. She is now on Hospice. She no longer walks, barely speaks words other than "yeah" and now no longer able to eat. Mom is hungry but she can't seem to figure out how to open mouth up to get me to shove some baby food in her. She locks down her teeth and won't let food in. I try my best to push food in around her gums with either my finger or a tsp but then I gotta fight to get her to swallow. Its sad when mom says "Hun, Hun" ,but no matter what I do she won't allow her jaws to open. Which in turn I get upset and than that makes her upset.
I have always been against feeding tubes. But seeing her hungry and can't eat really gets to you day in and out and makes one question.
If anyone has some suggestions or has dealt with this let me know. I am the lone caregiver making these decisions with mom, no help from siblings. I have always thought I had things under control with mom and when the end came I would know what to do. But now seeing her at the end I am lost. I think reality is hitting hard and I am trying to hold on super tight to her. When I know in my heart she needs to go home to the Lord and be with my dad(her jusband of 44 years) in heaven where she won't suffer no more.

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Luvmom, I have been with mom for a little over 2 years 24/7. We was never close so it was a struggle at first helping her. As time went on I realized all though years of resentment meant nothing. It was time I put aside feelings and stepped up as a daughter. I was the only one ,my siblings are worthless and have never been there(but thats another long story)
Since Jan of this year mom has had UTI periodically. 3months ago she started "holding" her bladder. I really don't know how to explain it. She would drink water all day long and maybe only urinate once in 24/hr period. I had to rush her to ER many of times to be cathed cause her bladder was full and she couldn't go on her own. 5 weeks ago when she went ER with a full bladder she was in beginning stages of sepsis cause of urine retension. During ER's testing doctor was concerned mom might have menigitis. I left them do a Spinal Tap on mom. I swear if the spinal tap was done wrong and this led to her instant inmobility, I will never forgive myself. During hospital stay and moms condition was rapidly progressing, thats how Hospice came into play. Other than that my husband thought maybe mom had stroke but tests came back negative? But thats not to say that she couldn't have had one after testing. She has "drop foot" in both feet now. She she showing temors and extreme tightness to left side. Her hand curls in and I can barely straighten it out. Thats why we are so stunned with the progression. It happened so fast.
I will keep in touch. Hopefully, my experience when help guide someone else through such a difficult time. Thanks for caring!!
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This is breaking my heart reading. I am so glad you got food into her and that your husband is helping. My husband is so good to my Mom too and loves her. My Mom signed forms she doesnt want artificial means of nutrition years ago and I wonder what will happen if she wants to eat but cant now. I prefer she be sedated and not know what is going on if it comes to that point, Oh I feel for you, bless you and good luck, please keep us informed how you handle this to help us all and to support you as much as we can. Can I ask how long your Moms been with you and why she went into the hospital? Did she has anethesia? HUGS 2U
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YF, first, how awesome that you figured something out.... what a loving daughter you are. You KNEW she was hungry... sometimes we have to go against things we are being told and follow our heart and gut... happy to hear she is resting better, super hugs to you...
The poem was beautiful. I am going to copy it if you don't mind... it spoke to me about Ruth... hugs to you...
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Jeeeesh Yellow - my spirit is soooo with you! Take care of yourself and I wish you, mom and your husband peace.
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Yellow, that is an ingenious solution you came up with. It brings two devices to mind, that might be easier, since you feel that feeding your mother is appropriate. One is called a haberman feeder. I used something very like it to feed my infant with a cleft palate. Look it up with google -- you could order one and have it overnight shipped. Something else you might be able to find in the local grocery store is an inexpensive food decorating kit. The plastic tube that you fill with frosting and push a plunger to squirt it out onto the cake could hold baby food to be squirted into Mother's mouth.

May your efforts to give comfort be successful.
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I found a poem online which was like a aha moment for me and wanted to share with others:
"God Saw You Getting Tired"

God saw you getting tired,
When a cure was not to be.
So He wrapped his arms around you,
and whispered, "come to me."
You didn't deserve what you went through,
So He gave you rest.
God's garden must be beautiful,
He only takes the best
And when I saw you sleeping,
So peaceful and free from pain
I could not wish you back
To suffer that again.

- Frances and Kathleen Coelho
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I contacted moms hospice and asked about any type of artifical nutrition that Hospice will cover. Unfortunately, thats a touchy question for them. Thats prolonging life when hospice is about end of life. The situation would be different maybe if mom just refused to eat, but all day she whimpers and keeeps saying "hun" meaning she is hungery. Which in turn I sit and cry. My husband came up with an idea about an 2hrs ago: Put a straw in baby food jar, I suck up some food in straw, place straw in her mouth wherever I can get in fully and I will slowly blow the food in straw into her mouth. Well, we tried it and it worked I managed to get a whole jar in her. Its a long slow process, but the look on her face was priceless. She is now resting comfortably. So I guess for time being that will work.
Luvmom, this stage of moms dementia came on practically overnight. 5 weeks ago mom was still walking(with assistance) eating semi solid food(with assistance) and eating soft cookies all by herself holding the cookie to her mouth. She went into hospital, 3 days later she was a different person. THAT FAST!!!! My husband and I has watched her progression go in about 3 month or so intervals, will slow decline. This was so fast, that 5weeks later we still can't comprehend what happened. And as the days go by now the worse she gets.
Hospice likes their Morphine but I told them up front ONLY as needed I will give it to her. Mom is Opiod tolerant so she requires more than normal dose of Morphine to comfort her. I don't want her sediated but comfortable.
My husband has never been emotionally attached to my mom. But now, I see all this is even affecting him emotionally. He is worrying himself about how to get her to eat.
I am lost for words. ....
I feel for any caregiver who did or is going thru it.!!
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luvmom- caregivers 'always' hv a choice but typically when you elect to involve hospice you are also electing to keep them at home and allow hospice to make them comfortable when they get to their 'transitional' stage. That's my understanding but didn't realize the sheer reality of it until Yellowfeever"s experience.
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I am so sorry to read these stories and my heart goes out to you. My stomach is flipflopping thinking of this stage. I was told by a co worker when they do not eat, that they go to the hospital and they are given moprhine to keep comfortable and will pass in a few days. As I read this, its not true in all cases and it scares the heck out of me. What stages do they get into when the end is coming, its so hard to think of this. I am so sorry for you all in this stage.
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My heart really goes out to you. Now you've given me a dose of reality since hospice is now involved with me and my mom. The advice above is all that I can think of as well but I would hope that there is someone from hospice that would take more time with you and comfort you a little more or spend more time with your mom. I'm headed for this too and it's already breaking my heart. Every now and then she will close her mouth and I thought she was being stubborn! I use a straw in water bottles for her and she'll forget how to suck - so I put the bottle to her mouth without the straw and she forms her mouth properly and takes a little drink. This rewires her brain and when I give her the straw again she sips it. I also thought maybe your mom is worried about you when she's gone and "she' can't bring herself to leave. Pray about it. Ask God to give you the courage and strength to let her go. And maybe once you are truly ready she'll let go. I know what you mean though. As difficult and draining as this is 'almost' every morning I can't wait to go into her room and give her a big hug-before I even go to the bathroom!! I'll miss her terribly-I'm noticing also as strong and competent as I thought I was I'm not. You don't know what you don't know. When their body begins to fail and they aren't responding ( you've made me realize) as they always have and there is nothing you can do - is a reality unknown until you are there. Thanks for sharing - you've helped me even though the reality totally scares me. I'm sorry none of this seems helpful to you but I think she may be ready my dear -- you will be in my thoughts and prayers.
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Yellow, my mother died about 6 weeks ago of cancer. We had hospice only about a week before she died. The cancer was the root cause, but she basically died of malnutrition. She could no longer suck on a straw, or even suck on the little sponge on a stick anymore. It was the hardest thing to watch my mom starve to death and being helpless to do anything about it. I thank God that she only lasted a day or so in that condition though. I can't imagine how it must be for you to also see your mom starve, and it sounds like she's lasting much longer in that condition then my mom. Are there any drugs they can give her to relax her muscles maybe? Not knock her out, just relax her enough that maybe her jaw would also relax and you could stick a straw or a spoon in her mouth. I am so sorry about your mom. I get it.
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J,
Jeanne and Ladee are aware, caring ladies, friends around you here. Try not to think, just get in touch on spiritual level and have a talk. You relax, give Mom your blessing to go when she needs to. These are the mysteries of life, which someday we will understand. You are a loving, devoted daughter. Don't fight anything, my friend. Big Hugs, Christina
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There is no way you are giving up on her by allowing things to follow the course they are destined to follow.. you are a very loving daughter and she KNOWS that... and sometimes we just don't know what keeps them hanging on. Isn't God's time yet? She is waiting to hear something, maybe permission to go on? Her light isn't done shining yet? I wish we did know, it would be easier for everyone involved.. but never doubt that with our permission or not, when the time comes, there will nothing we can do to stop it.. I recently had a very good friend (on this sight) remind me that I had done everything I could possibly do and that I would not want Ruth back here suffering any more.. She also had last stage Alz. I really do know what you are feeling right now, and Ruth was not my Mom, but I know now she is happy, she is whole, she is with loved ones that passed before her.. No, there is nothing easy about any of it... be kind to yourself, your mom would want you to accept that, she loves you as you love her, and when that time came for Ruth, I just sat by her bed, and talked and talked and talked.. about any and everything.. I think she knew that was for me... but I patted on her, gave her lots of kisses, there was nothing else I could do but love her till the end... You are in my thoughts and prayers... hugs to you..
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Yes, you will be lost when she passes.But if you are healthy, you will soon find yourself again. Your husband and kids will take their rightful place in your life. You will build a life of your own.

But whether you are ready or not, this will happen. Your mom will pass on. You are doing your best. You can take satisfaction in that. Even your best will not prevent your mother's death. That is coming. You feel like you need to do more. Perhaps you need to assure her that she is leaving you in good shape. That you will carry on and be fine. You will miss her but she will always be part of you. That she can leave when she is ready.

Hugs to you.
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Mom will say "hun" thats our word for hungry. Its like she tries but her mouth won't work with her. Hospice says" whatever you can get in her your doing your best". But for me, I think I can do better. But I know you can't force one to eat cause the more they resist the more you get nothing accomplished.
I should be used to this, I worked in home health for years and seen ones pass on. But when its your parent or loved one its a whole new ballgame. I just feel like I need to do more. I am struggling with giving her over to God. I need to accept things for what they are now. But I feel like that means I will be giving up on her. I have became so overprotective of her and have put her first above husband and kids. I will be lost when she passes.
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I just recently went thru this with Ruth. Have Hospice explain to you what is going on. They gave us a pamphlet to read that explains what the body starts going thru at this time . It helped me so much and explained in a way I could understand... Ruth's body was taking care of itself, just as God intended.. giving them food or water when they are refusing can cause them to aspirate,and that is very very painful for them.. As jeanne says please ask Hospice what to do if anything.. I know this is very very difficult to stand by and watch... but please also get them to explain the pros and cons of a feeding tube.... If she is unable to speak, how do you know she is hungry?? I kept having to explain this to the family... please get Hospice to fill you in... my heart goes out to you, it is difficult, hugs to you...
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Oh, this is very, very sad. My heart goes out to you. What does Hospice advise? They have seen this situations many times.

If she is in the final stage, on Hospice, she is dying. That is a hard reality to accept, I imagine. Getting her to eat might prolong her living, but it will not improve her quality of life and won't prevent her from dying in the near future. I understand that at the end many people stop wanting to eat and may refuse to open their mouths to accept food. Since your mom has dementia it is hard to know whether that is what she is doing, or if she wants to eat and just doesn't know how to accomplish that.

Again, what does Hospice say? Hugs to you as you face this incredibly difficult journey to the end.
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