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I need your help regarding my very frail mother
TessC
Posted: Saturday, October 5, 2019 3:46 PM
Joined: 4/1/2014
Posts: 5202


I need your opinions. I am ashamed to ask you good people who have lost a LO, but I don't know who else to turn to. I asked our hospice nurse, but she has not been helpful-leaving me to wonder if I am thinking right.

  My mother is very weak-cannot stand or keep her head upright, losing so much weight that she is skeletal now, sleeping all the time, moaning when I move her to clean or change diapers. She will drink Ensure from a straw reluctantly with prompting. I pray that she will be taken at night but she hangs on because she has/or at least had no other illnesses expect a DX of Alz. Family members want me to stop her feedings because they feel she is suffering, but I just can't seem to do it.When I feed her she always coughs and I feel so guilty, but her lungs have remained clear.

I know this a personal question and it you rather make me a Connection and send me an email, that is fine, but can anyone who withheld food tell me what made you decided to do it and what then transpired?  I am afraid, I am sad, but I know this is not about me, but about my mother and I want to do what is best for her.  Thank you



MPSunshine
Posted: Saturday, October 5, 2019 5:29 PM
Joined: 5/21/2016
Posts: 2010


Hi, Tess, I’m so sorry you’re going through this, and also that your mom is going through this. In our case, my mom voluntarily rejected food two days before she died, with my dad it was one full day. They let you know when they refuse to swallow. I know there are others but this is what happened with my two parents, there was just a point when they were done and they let me know by refusing to swallow. It was hard for me, but in retrospect it was pretty simple and they were ready in their own way, both at their own time.
MissHer
Posted: Saturday, October 5, 2019 6:20 PM
Joined: 11/13/2014
Posts: 2368


Oh Tess this is so hard. I am so sorry. That must be awful for both of you. My mom never made it to that late stage and I'm thankful for that. 

 My mom also refused to eat but she would drink some. . It took two months of her denying food. I begged and pleaded and tried feeding her but she got angry and turned her head. I don't know why, but, she went into a coma and passed on late that night. Maybe she had a stroke.  

Sending up prayers for a peacful passing. 


ladyzetta
Posted: Saturday, October 5, 2019 6:36 PM
Joined: 2/16/2017
Posts: 1501


Dear Tess,

My DH was on hospice for the last 3 months he was alive. As you know their body will start to shut down and I feel that is something you need to listen to. My DH slowly stopped eating and wanting nothing  to drink. That is when hospice told me it was time to let his body shut down. There was no pain with this process he passed away 3 days later and it was fast. The last day he was on morphine I was with him till he passed and I know the morphine kept him totally relaxed. 

I know how bad you must feel you have been a angel to your Mother and have giver her a lot of loving care but you have to do now what you feel it right for your Mother.

My sister had cancer and she passed away at home and the hospice nurse gave her girls the morphine to use as needed and it also was a peaceful passing. 

Please feel free if you want to connect with me, you know we are all here for you. Hugs Zetta 


jfkoc
Posted: Sunday, October 6, 2019 3:06 PM
Joined: 12/4/2011
Posts: 20105


My advice would be to have a talk with the Hospice Chaplin, not the nurse.

Clearly your mother is dying. All of had a loved one who was dying. It is truly overwhelming.

Our Hospice was frantic when they saw up using a straw so we stopped immediately. Seems it often leads to choking.

I, until very near the end, thought nutrition was vital if he were going to get better...then it was vital for him to live. I put protein powder on orange sherbet!

I did not accept the fact that he was going to die until 9 hours before he did.

I ran around trying to figure out what he would eat when I could have just offered something he would have enjoyed and let him decide if he wanted a bite or not. I would have let go of all of the encouragement and let his body do what it needed to do.

Please keep us in the loop.....


Dahlke
Posted: Sunday, October 6, 2019 10:13 PM
Joined: 7/6/2014
Posts: 1350


Dearest Tess,

I had to deal with this very same issue a year ago.  For years I took comfort from your loving and heartfelt posts.  My spouse slowly faded from his life ,especially the last 3.5 years. . He was alive but not living in any sense of the word. It is an agonizing decision for the caregiver, but I think that in their own way, the lack of interest in food and decreased appetite is their way of saying, "I'm tired and I am ready to go."  

WE  THINK WE ARE NOT BE READY TO FACE THAT. 

Our instinct says: I need to keep on trying. Their  body gets tired, the soul fades and death is part of life's cycle. You have been a stunning example of love for a parent.  You will always love your Mom, and have done all  that you could to guarantee her a quality of life to the very end.  Let her leave and rest.

Keeping you in my thoughts, Tess.

Cynthia (Dahlke)


Tink4495
Posted: Monday, October 7, 2019 12:00 AM
Joined: 5/2/2014
Posts: 761


Tess, I am so sorry you are at this point with your mom. You have done an amazing job caring for her. This stage is so hard and having to make this decision is hard. My mom started losing interest in eating a week before she passed. I would offer her food and she would take 1 bite and then shake her head and tell me no more. She refused ensure and boost long ago. She even at the end did not want ice cream which was always the one thing she loved to eat. She still drank her coffee and when she no longer wanted that, I knew she was telling me in her own way that she was done. Hospice provided the kit and we used morphine as needed which helped keep her calm. She went into a deep sleep or coma as some call it. I used the sponge swabs to wet her lips as needed. I was fortunate that both my parents made their wishes clear long ago and both believed in quality of life vs. quantity of life and wanted no extreme measures taken. I had to respect their wishes even though I wanted them to hang on. Our hospice had provided a couple of books on the dying process and they were very helpful. If she is coughing when feeding her, this could be due to her losing  her ability to swallow which is part of this disease and it can lead to aspiration which is not good and can be creating more stress on her weaken body. I will pray for you and your mother and that you find guidance in making your decision.

Sending love and hugs from one daughter to another


Jo C.
Posted: Monday, October 7, 2019 7:11 AM
Joined: 12/9/2011
Posts: 11988


Dearest Tess, I have followed your Posts from the very beginning; you are someone I respect and admire very much.  You have been an inspiration and a teacher to all of us.

The care and devotion you have provided to your mother  has been such a blessing; no detail went unaddressed. 

For me, this was the most difficult part of the journey through dementia with my dear mother.  The time came when my mother could not sit up; neither her trunk could hold her up nor could she hold her head up even in a Geri Chair with supports; she could no longer use her limbs, she had lost speech, her swallow was not good.  Yet, at some level I think she knew I was there - she may not have known who I specifically was, but she somehow sensed I was a kind and caring face when she was at times able to focus on my being there at the bedside.

I wanted to provide her with comfort which included liquids at intervals and felt that was something needed - why, I do not know except she was "mother," and I was her carer and I so deeply cared.

What I needed to remember was that aspiration can be silent and I was putting some risk into encouraging liquid intake into a body that could no longer really process to benefit from such feedings any longer and which she most times turned away from.  It would not stave off the inevitable and could make things a bit more difficult.

Here I am, a Masters Degreed RN who cared for many, but this was somehow different.  Hospice was on but not much guidance there.   I worried about thirst; didn't care if some writings say that a person in that condition does not feel thirst, I was concerned that she would.  Once again, logic and emotion did not live on the same plane of existence.

I offered water, but she reached a point she did not want it any longer.  I needed to stop myself from pushing and accept that she was leaving; yet, there I was.

What was done was to make every attempt for comfort.  Weather was soft spring and softly warm. I opened the window near the bed so she could feel the soft breeze on her face and perhaps smell the wonderful spring air making sure she was warm enough.  Lotioned, turned, comforted as best could.

One day, she seemed to abruptly rally a bit, she became suddenly a bit more alert, she actually smiled; I wondered if she had somehow turned a corner.  Denial was still strongly within me.

The very next morning came and her breathing had changed.  She was now deeply unaware of anything around her.   Her face began to perspire; I knew what was happening and it was so deeply, deeply sad.

I do not usually tell people this, but when I walked into the room and instantly saw the immediate inevitable, I suddenly said with great feeling, "Oh, Mommy!"  I had not called my mother, "Mommy," since I was a young child; it just uexpectedly erupted right out of me. 

We opened the window as stated above, I sat next to her and held her hand; I used a cool moist cloth on her perspiring forehead.  I said "I love you Mother."  And I waited.  It meant everything to me that she was not alone. 

She soon began to have "Cheyne-Stokes Breathing," where she would breathe a few breaths and then stop and then start again.  It was only some minutes before she stopped breathing entirely and slipped away from this earth without struggle or strife.  I have tears in my eyes writing this; it is still a heartfelt memory.

She had been with me as I was born onto this earth; it felt right and I also felt deeply honored to be with her as she left this earth.

My mother.

There comes a time when we must realistically put down the implements of trying to hold onto life and provide all best comfort measures as we lovingly provide as much comfort as possible as our dear Mothers slip away from us to become part of what is waiting. 

We are SO used to "doing," it is hard to let go of that and of course we do question and second guess ourselves.

You must do what you feel is the right thing, but I think you pretty much know what that is as difficult as it seems to let go of the "doing," and simply being there for her as she spends her final moments with her dearest daughter.

I send you my warmest thoughts and will be thinking of you; this comes from the heart from one daughter to another who has made this sad journey.

Soft hugs to a valiant woman and also with affection,

J.


w/e
Posted: Monday, October 7, 2019 12:39 PM
Joined: 3/7/2012
Posts: 1752


My husband died during the adv. symptoms of dementia of the Alzheimer's type. He was 68 y/o when he died. He had a 10+ yr odyssey with Alzheimer's.

Five years ago, I became his widow. Five years ago, I had to give voice to the directions to be given to the medical community and to our family about my immortal beloved's officially written (legal) living mandate. The mandate about what kind(s) of medical interventions, the manner of his death, his cremation, his ashes. So on and so forth.

Oh, fateful morning! It was the most difficult moment in my life. But I knew I had to carry my beloved on my shoulders all the way to the mountain top. He knew me well. He knew that I had the strength to do what I needed to do. When. How. And why.

He died peacefully nestled in my arms. He died serenely. He died looking at me. He died loving me. For I had taken good care of him from beginning to end and he was proud of me.

Be at peace, Tess. Try to find the strength you need deep inside of you. Do what is best in your situation. And all shall be well.

Soft hugs for you, your family, your friends. For this is an intimate moment. This is a sacred moment. This is a moment of grace.


TessC
Posted: Monday, October 7, 2019 3:30 PM
Joined: 4/1/2014
Posts: 5202


Thank you to everyone who replied and to the 2 people who sent me emails. All your responses have been so kind, thoughtful, sincere and helpful. I have read each message over and over and I hope the answer that is right for me and my mother will become clear as a bell-but so far it has not. I feel like I am being thrown around on crashing waves and feel sea sick. Hopefully I will soon know what course I must take and then be content and at peace with my choice. I can't seem to move forward without that clarity.

Many thanks to you all who have shared their feelings and opinions with me. It means more to me than I can say.


Jo C.
Posted: Tuesday, October 8, 2019 9:01 AM
Joined: 12/9/2011
Posts: 11988


Dearest Tess, you are in the process of internally processing all that is at hand; you will know when the moment is right for you to step back.  

It is also a possibility that your mother's body is not getting value from the Ensure and that she may pass despite the small feedings of liquids.

This nurturing is your last gift in love to her; and that is understandable.

Let us know how you are, we truly do care,

J.


Eric L
Posted: Thursday, October 10, 2019 11:10 AM
Joined: 12/5/2014
Posts: 1286


Tess,

I know this is a terrible spot for you. Our family was in this situation for the last few weeks. When MIL started to cough after taking liquids from a straw, the hospice nurse told us that we should stop using straws and that all of her liquids should be thickened from there on out. A short time after that (a week or two) we were told that we should no longer offer her any food or drink. A couple of days later, she passed.

Even when she was still eating, she still was losing weight at a very rapid rate. I still struggle with the ethics of it all. We were feeding her to help her or did we feed her to help us? At a certain point, her body wasn't using it anymore. Granted, it still hurt like heck after she was gone. I think we did alright by her.
TessC
Posted: Thursday, October 10, 2019 2:21 PM
Joined: 4/1/2014
Posts: 5202


Thanks Eric L, thank you everyone. Our hospice nurse hasn't say that to us. They keep saying her body will "tell" me when it is time to end feedings because the body just won't take it up. Plus, I think they know better then to tell me what to do, lol! We have been with them for 2 years!

Mother's heart rate has been twice the normal rate for the past 5 days. O2 levels are in the 70's. Did you see these kinds of changes in your MIL the days before she passed?


Jo C.
Posted: Friday, October 11, 2019 8:31 AM
Joined: 12/9/2011
Posts: 11988


As her body is declining, the O2 level is low and the heart is pumping extra fast and hard to try and oxygenate the organs and all tissue.

This was part of the process of leaving with my mother.   It is so deeply sad, all we can do is make our dear LO as comfortable as possible and to let them know by deed and by voice how much we love them.

How are you feeling Tess?   I come to look for you each day to see how you are.  From one daughter to another, I send my understanding and care.

J.

 


Eric L
Posted: Friday, October 11, 2019 1:12 PM
Joined: 12/5/2014
Posts: 1286


Tess - If I remember correctly, MILs heart rate actually fluctuated quite a bit during her last few days. I do know that her blood pressure was much lower than it had been. I'm not even sure if they let us know what her o2 level was. She had been on an oxygen concentrator since May, so I'm not sure how often they were actually checking that stuff. Just looking back on the text message I received from her case manager a couple of days before she passed, her concerns were more based on the lack of appetite, that she had noticeably lost weight from her visit the previous week, and that her agitation levels were much lower than they usually were during visits. She also said that she was concerned that her mouth was open all the time, even when she was awake.
TessC
Posted: Friday, October 11, 2019 2:23 PM
Joined: 4/1/2014
Posts: 5202


Mother has been place on our hospice's "journey's end" protocol and we will be getting a RN visit daily, unless they see a need for more continuous care. I have elected not to use oxygen at this time and there will be no more feedings unless mother has a miraculous rally.

It's all very sad and family will soon be showing up to say their good byes, ie, more tears. I know she will soon be surrounded by the blissful Love of our Heavenly Father and I am grateful for God's many gifts throughout mother's life. Until then, please keep my mother Terry in your prayers.


Eric L
Posted: Friday, October 11, 2019 2:34 PM
Joined: 12/5/2014
Posts: 1286


Tess - I'm so sorry to hear the news. I wish I had some wonderful words and advice, but all I can say is that you've been an excellent caregiver and her loss will deeply affect everyone.

ps - We elected to use oxygen because our RN explained that it was a comfort measure and that it wasn't used to extend life.
ladyzetta
Posted: Friday, October 11, 2019 3:40 PM
Joined: 2/16/2017
Posts: 1501


(((((( Terry & Tess )))))))) Your in my prayers.
Caring4two
Posted: Friday, October 11, 2019 5:04 PM
Joined: 7/6/2014
Posts: 668


TessC asked:

Mother's heart rate has been twice the normal rate for the past 5 days. O2 levels are in the 70's. Did you see these kinds of changes 

Yes to both. It took my husband seven days to pass. He started with the labored breathing about day 3. I used the morphine generously to keep him comfortable. I did use the oxygen just to help with the labored breathing, again as a comfort measure.

He’s been gone over two years now but his final day on earth is etched forever in my memory. 


jfkoc
Posted: Friday, October 11, 2019 6:08 PM
Joined: 12/4/2011
Posts: 20105


My heart is with you .....my arms holding you tight....
Wgonzo
Posted: Friday, October 11, 2019 7:43 PM
Joined: 1/8/2016
Posts: 365


Dear Tess,

My prayers are with you, your mom and family. Your kind words and support have always been so helpful and positive on this board. Know I'm holding you up during this part of her journey. God bless you.

Wendy


Tink4495
Posted: Saturday, October 12, 2019 12:43 AM
Joined: 5/2/2014
Posts: 761


I am so sorry Tess. This is one of the hardest things to go through. I will be praying for you all and that her journey is a peaceful one. Sending soft hugs.
MPSunshine
Posted: Saturday, October 12, 2019 8:12 AM
Joined: 5/21/2016
Posts: 2010


Hi, Tess, I'm keeping your mom Terry, in my thoughts and prayers, also you and your family, as you go through these last few hard days. It's the most devastating feeling -- you know she will be free, but it's the process to get there, it's very difficult, heart-rending. Holding you all up in prayer.
MissHer
Posted: Sunday, October 13, 2019 2:18 PM
Joined: 11/13/2014
Posts: 2368


Tess, I'm so sorry and will be praying for Terry and you. I was with my mom when she passed on to our Heavenly Father. It was sooooo hard and I didn't want to let go anyway, 

Deb


Dahlke
Posted: Monday, October 14, 2019 5:01 AM
Joined: 7/6/2014
Posts: 1350


Still praying for you Tess.  We all are.

Cynthia (Dahlke)


TessC
Posted: Monday, October 14, 2019 9:03 AM
Joined: 4/1/2014
Posts: 5202


Thank you all for your kind words and prayers. Mother is still with us, but unresponsive. I'm glad she does not appear to be scared or in pain, but that horrible breathing pattern-it follows you all over the house. It reminds me of the breathing pattern my father had when he was hooked up to a ventilator. At first her breathing was very loud, but now it is more shallow and subdued. I cannot get a reliable O2 stat or hr on her with my finger monitor. Both must be very low. 

 It is difficult to get the liquid pain meds into her, but was taught to put her on her side and let it just pool up in her cheek.

I treat every entrance into her room as if it was the first time of the day-the same words and habits I have followed for years. Maybe that will bring her comfort. This is my life now, checking up on her, giving her meds, cleaning up, reading to her, telling her what a great mother she is, thanking her and telling her how much I love her. I took pictures of her hands last night-she still has beautiful hands and nails.

It's been good to have my siblings coming over. There are more laughs than tears. Mother raised us with a lot of love and so it's only naturally there to be so many good/funny stories to share. 

Thanks for your support, friends.


Eric L
Posted: Monday, October 14, 2019 12:31 PM
Joined: 12/5/2014
Posts: 1286


Oh Tess, my thoughts are with you. It sounds like where we were at  couple weeks ago. It's agonizing.
Jo C.
Posted: Monday, October 14, 2019 2:33 PM
Joined: 12/9/2011
Posts: 11988


Dearest Tess, you are your mother's sweet angel, my heart and thoughts continue to be with you.

If meds are an issue, Hospice can provide both Ativan and pain meds in cream or patches which eliminates the swallowing issue.

May peace be with you, your mother and your family,

J.


MPSunshine
Posted: Monday, October 14, 2019 2:52 PM
Joined: 5/21/2016
Posts: 2010


Oh, dear, I have read this, Tess, and there are tears in my eyes remembering both my dad's and mom's end of life times. Yes, this is the circle of life. This is the way it is supposed to be. Yes, the breathing is hard. I can share my essay about that when you are ready. Ask for atropine, which will dry up some of the secretions.

Much hugs and support to you right now. This is the most difficult time. I'm glad your siblings are with you.

 


Tink4495
Posted: Tuesday, October 15, 2019 12:00 AM
Joined: 5/2/2014
Posts: 761


My heart is breaking for you. My mom had very labored breathing and that is a sound I never want to hear again. Continuing to send prayers and soft hugs to you all during this difficult time.
Skittles412
Posted: Tuesday, October 15, 2019 7:57 AM
Joined: 5/14/2018
Posts: 259


 Dear Tess:   

I’m crying now after reading your last post.  You’re explaining exactly what happened with my siblings and I when my mom was nearing the end. My heart goes out to you, it’s just so difficult. I did just as you are doing…..talking to her, singing and playing her music…..telling her how loved she is.  Trust that she is in no pain, she is slowly transitioning to the other side.  All you can do is hold her hand and tell her how much you love her.  Lifting you, your siblings and especially your mom up in prayer.  God bless you all.

Lots of love

Xoxoxox -Kat