How to stay strong as mom begins to state she doesn't want to live?

Thanks for all of the feedback. We accept that her life is pretty icky right now and that feeling crappy full time is no way to live. I am peaceful with the decision, I really am. I wish that I had a magic wand so that everything could go her way, she'd feel happy in spite of how she physically feels and people would visit every day. But I can't change those things.

Mom isn't peaceful about the decision, so I've spoken with her a bit, learned that she fears it is suicide and thus taking God's will into her own hands. I believe that I've found a woman who can help her make sense out of surrender and that surrender isn't the same as taking on God's will.

Thanks for the guidance.

I had an Uncle who was dying of end stage liver cancer and my Aunt did not want to give him another 1/2 tab of codeine because she was afraid he would become "addicted." He died an hour later.

FlaPorter- beautifully written, exactly how I feel.

Dear Kgirl-

My father died earlier this year, and a few months later, my brother (only in his 50s).

In both cases, although their ailments were quite different, there was NO chance that either of them were going to "bounce back" to a life they felt was worth living. Too much water under the bridge, too many choices that led to consequences that could not be reversed, too much progression of disease.

Also in both cases, there were relatives who wanted my father and brother to live at all costs. My father and brother were very stoic about their condition and complained little, which fed the notion that they *should* want to live longer, they *should* be motivated to do what their doctors told them. I don't think any of us understood what they were really going through, and I don't think they wanted us to know. My mother was freaked out about my father becoming an "addict" from his dilaudid (the only Rx that cut his cancer pain), so he "miraculously" reported less and less pain. I think in truth, he was in agony. My brother, who suffered from COPD, T2D, immobility due to a botched knee replacement, profound obesity and edema (and more) felt like he was drowning, had lymph seeping from his skin which was stretched to splitting. He was so sick, intubated so many times, lost so much cognitive function. My mother thought all he had to do was to lose weight.

I believe that our loved ones do not want to hurt us by dying, and it takes a tremendous amount of suffering and will to be relieved at last to bring up the topic of dying with the loved ones who want us to miraculously get better, or just not die.

Apart from people who are genuinely malingering or being dramatic for attention, I believe that we should not put pressure on our elders to press on no matter what. We have not walked in their shoes. We should not second guess what they say they feel, and write it off as "depression." Depression can be co-morbid with an intolerable state of physical health, and does not "disquallify" a person's expressed, reasoned desire to stop living when there is no real hope of improvement.

I think our own lives should be the laboratory for our hypotheses about when and how to disregard the will to end one's own suffering. If we do not wish such desires to be respected if we ever express them, we should write to that effect in our health care proxies. But would you do that? Would you allow your younger healthier self to prevent your future, elder self from changing your mind when your conditions change? I wouldn't.

I whole heartedly agree that it is a balm to ask about the past, and very healing emotionally to our elders to tell their story and for us to hear and memorialize (I'd use video or audio tape) their story. It helps us all to recognize how much they accomplished, how far they came, how rich their lives have been. And it helps future generations to know where they came from.

Finally, just one comment about something that always rankles me: the notion of giving someone "permission" to die. I have been with people at their death. I agree it is very good to tell them that they have left nothing undone, and that all worldly affairs will be handled well, and that there is no need to fear letting go on account of the living.

I urge them to have no fear, that religion aside, physics has proven that information never "dies," that matter never disappears, it only changes form, and that we know there are dimensions that exist outside our perception. I believe that consciousness is information that never dies, too. We know we are all made of stardust, constituted of the same elements that make up the multiverse. I urge them to know that they will be loved and never forgotten, so they have no reason not to embrace the new state of being just moments away. To dive in with trust and abandon to whatever is next.

No one has the authority to give to, or withhold from, an individual the "permission" to die. Giving "permission" says, "I'M ready for YOU to die," which of course is irrelevant. We need to help the dying give *themselves* permission to die--nobody else's opinion matters because our bodies and our lives belong to us alone.

Consider her gifts to you of strength, wisdom and love and draw on them to guide you...

Correction, moms current health problems ARE being managed and we aren't running from Dr. to dr. Any longer.

My mother has lost two husbands to death, one in 1988 and one this past Feb.
She had to be placed in a retirement home because she was having a mental breakdown. I had to take care of getting her things from her home, sorting and asking what to keep and what to sell or give away. She could barely understand what I was asking. We saved the precious things like old family photos, things from her mom and her grandmother which grandma had handed down to her last surviving daughter. It was an emotional time because I knew they will be mine some day. For about 4 months or more mom was a different person. There was no joy in her life. She had to leave her home, lost over half her income, couldn't drive so I bought her car and put the money in her small savings account. At first she was inconsolable, angry, depressed, lonely, stopped eating and drinking, (and she only has one kidney which I keep reminding her to take care of. She lost over 6 of her 126 lbs and we were begging her to go to the dining room and eat. As she improved I became more demanding that she eat, hungry or not.
She will now go out with me occasionally to eat and go to church. Her improved attitude has gotten more friends and relatives to visit and she is improving.
I found a diary from 1991 when she had to sell the house my dad built for her and the depression was more than I could have endured. Had I read it then I might have had her hospitalized. She had been talking the same way with this change in her life. She took her night meds in the morning for DAYS and slept most of the day. I finally found a dispenser that would only let her take the right meds and we both were grateful for that. (I wondered if she was deliberately trying to hurt herself, but think now that she was actually trying SOO hard she get confused in spite of the notes, phone calls etc. trying to help her.
She cannot be through grieving if your dad died in March! I was widowed in 1988 and for the better part of 3 years I hid in my bedroom. I was 60 and widowed, and angry that my 62, almost 63 yr old husband refused to see a doctor and had a massive heart attack and died in the night. My mom has been hospitalized years ago for depression and I sat in hospital with her then. It is so hard to keep encouraging them that things will get better. I'm so glad I spent the time and effort to love her back to the reality that MANY people love her and want to help her come back to a full life, in spite of the onset of dementia. She is sometimes in denial about her memory loss, but I keep trying to help her see that she will be in this retirement home until she goes to a nursing home. She is better but not able to live on her own and It is my worst nightmare thinking I would have to go through getting her into another home AGAIN later! My mom has few health problems that aren't managed right now, but her dementia is keeping me on my toes as it is. Good luck and God Bless. I surely believe in prayer.
Donna

Oh, gosh, dialysis is no picnic, and plenty of patients have quit it. If it is overdone, you will feel like a bad hangover. If that is how she feels after a treatment, she may be dehydrated, and a little Gatorade may help or some ice tea with a pinch of Morton's Lite Salt, which has balanced electrolytes and not just sodium chloride.

My father was always the happy go lucky person who honestly never met a stranger. He became friends with everyone in our neighborhood as he would stop and speak to anyone he saw. His quick walks around the block became longer as he met more people and they would sit and converse about everything under the sun.

My father had been a smoker since he was about 12 and quit in his 50's when the surgeon general told everyone it caused cancer. By then he had done enough damage to his lungs that we knew he would eventually have emphysema. As a child he was also exposed to TB by his mother who had it so it created "Swiss cheese lungs" as his doctor explained it.

In 2006 when he died, he was so tired of being sick and the incessant coughing that he looked me square in the face, told me he wanted to talk to his doctor and said, "This is it, I don't want to go on anymore" at the same time he was motioning that he wanted an injection to end it all. We were all heartbroken, but we knew what he had gone through that year and although we wanted to keep him with us, we knew we had to let him go....it was time. Within minutes of them removing his CPAP mask he was gone. He has been greatly missed but we are confident that he is in a better place and without pain or illness.

I can honestly see why your Mom feels the way she does, she was probably married to your father longer than she was ever single, he was her life and reason for living. She is faced with illness and struggles each day and is probably in some discomfort if not pain. I believe you said she was retaining some water in her lungs, you realize that this gives the feeling of suffocation or drowning right? It is frightening, my asthma is frightening so I can seriously feel your Mom's pain.

I know this is hard for you and the possibility of losing two parents in one year is heartbreaking, but just think about the fact that you are releasing her to a life free of pain and illness, and where she can once again be reunited with your father.

I hope and pray that you will both find peace. God Bless you on your journey!

I liked MrsDrLaMar's comment. Give it the old college try one more time to see if more attention and better physical care can make her feel more like living. If it doesn't change anything, you have your answer.

My mother told me she would never want to be resuscitated. She was elderly but not especially ill at the time. I told her, "Mom, we have to try the first time, because you might survive and have 5 more good years. After that, we can let you go." She accepted that, and several years later, had an attack. Resuscitation failed, and she was gone within hours of the first sign of trouble. She didn't want to die, but she really didn't want to linger, so she got that wish.

My mom is not on dialysis but is 82 with COPD and CHF, diabetes, legally blind, hard of hearing and tired of living. Her quality of life is none. I love my mother to death. She prays for God to take her. At first this was so depressing to me and my siblings. Being my mom's primary taker for a while makes you aware of how hard living day to day is for her. She sleeps most of the day and then showers and eats and sleeps again. My mom used to be so outgoing but after her strokes and all her ailments compounding, it has left her a frail elderly woman with no hopes of seeing tomorrow. I now pray for God to do his will and when he does take her to please make it a peaceful and painless transition. My mom know how much we love her because we tell her all the time. We all must get old and die, just the natural cycle. The day my mom passes will be so sad but also a relief to know that she is in a better place where she won't suffer any more. God be with you and your mother. Look to God for answers. Your mom is still here for a reason and only He knows. Hugs. Carmen

My heart is with you but it's probably one of the hardest decisions to make... Giving your loved one permission to go. I knew my Dad was tired of hanging in there for us and now being the only surviving child I had to make some of the toughest decisions regarding my Parents life, health and welfare. But after watching Dad languish for so long, I gently said to him Daddy, youre a great Dad and Husband I love you but if you're tired and ready to go its ok. It brought me to my knees but I knew I was fighting for him to live, harder than he was. Letting go is a hard thing to do but it's the loving thing to do.
I wish peace and clarity in all of your decision makings.

Thanks everyone. We do have all of the paperwork in order. Not long after dad died I knew that I needed to be able to be a part of making healthcare decisions. I'm not sure mom will make the choice to stop dialysis. Its hard to imagine what life would have to be like for her to decide that. She still seems fearful of death. She always follows up statements of fear with looking forward to being in Heaven, being with dad and my brother, her mom etc. I've found that if I think to far ahead I begin to feel too overwhelmed, so I plan for the next week so I can keep my cool. Boy living in limbo ain't something I like very well. Sigh.

After my FIL died my MIL (86) didn't really want to keep going either. A stupid dr. told her that when a long time spouse dies the remaining spouse usually only lives 18 months. When 17 months were up she told my husband that she only had 30 more days to go so I decided to put her to work. She came out to our business 3 mornings a week for 2 hours and put brochure packets together for us. She was so proud of helping us that she told all her friends. We got another 18 months with her but when she went into kidney failure she didn't want anything done. As hard as it was, we respected and supported her right to make that decision even tho it made us very sad and we knew we would miss her terribly. We had her for 10 days after that and she died in our arms in her own bed with dignity. People should have that right. When we are worn out and no longer have any purpose for our lives what is wrong with saying enough is enough. I hope and pray that my family will let me go when am ready.

Western societies seem to have a much harder time with death. Not sure why, probably because we all live in a state of denial that we will live forever. I think your Mother is actually showing an acceptance - I am sure it is very difficult for you but it is her life and she has a right to decide on how to end it. None of us get out alive.

I totally agree with the idea AND practice of acceptance. I talk to my 83yr old Mom, who lives with me, & is in terrible shape, about dying everyday. But only if/when SHE brings it up. I never disagree or try to change subject, just listen to her. The tendency is to try to stop them from speaking about it, because it makes US uncomfortable. However, we are the caregiver, not the dying person & it NOT about us. I also agree with the idea of NOT making a person "eat better or more"
Part of the making them "comfortable", is letting them make those decisions.

Thinking about it, isn't it natural that your mother at this stage would welcome an end to the suffering which her life has become? If you could accept this and be at peace with it, perhaps things would be more pleasant for both of you.

Under the circumstances, I am amazed her doctor would try to motivate her to take better care of herself in order to live longer. Rather, the focus now should be on her having the best quality of life possible for however long she has left.

You've been given excellent advice in some of the answers and I pray you can use it to make plans which will be a blessing to you both.

@Veronica- Hospice called it comfort measures because she was being given medications for pain and kept in a hospice room, she was only on a trache because it would have made her choke to death to have it removed. I did not say I agreed with the terminology, and if I could have cut it off myself without legal or moral repercussions I would have. It was the medical team's terminology, not mine. Which is maybe where I went wrong in my answer... she had a DNR and proxy and everything, but that was the only way for it to happen. There was no artificial nutrition, and the dialysis was discontinued, therefore considered comfort measures due to the medications. It was not a pretty process, and took more of her comfort than it gave. I apologize for the confusion.

Some wonderful sensitive answers here, but get the paperwork in order so that you can follow the wishes of the patient. lorrianns GM was not, I hate to disagree. on "comfort care" if she was unable to speak or move and hooked up to machines.. Comfort care means keeping the patient pain free and dealing with other symptoms but NOT hooking them up to machines to keep them alive.
If someone is on dialysis and it takes you all day to get them to the dialysis center, get the treatment, and bring them home only to have them collapse exhausted. What part of that includes quality of life I call it torture. It is not a sin or a crime to stop the dialysis and keep the patient comfortable at home. You can expect them to pass in 10-14 days with peace and dignity. If there is a purpose of dialysis such as waiting for a kidney transplant that is another story.

kgirl870, deeply sorry for the loss of your father, as well as the current condition your mother is living. We all know it's not unusual that any elder couple that have spent their lives together one dies the other goes soon after. My mother and father have been together since they were young teens, they've been married 66 years. I would say to you, acceptance practice the acceptance of your mother's choices at this late stage. I find it hard to watch my mother not eat as she should to promote her bodies best health, I still try to sneak in proteins veggies and fruit, but she won't eat them always I'm not going to fight with her about this because it ends in tension. At this stage all I can do is hope she is comfortable, you can listen and share the grieving process together on the loss of your father it will help you both. End of life issues are the hardest always in every single way. I just pray for my situation and yours it will be a good death, that everything needed to be said was communicated shared. That any hard feeling and God knows there hard feeling in my house hold will be resolved forgiven and forgotten. God Bless you in your journey, mostly prayer helps me when I can pray, doing what I can without frustration which lately has been hard. I want to look back and be able to know I honored them, best I could. At this stage acceptances doctors tend to want to extend the inevitable in the elderly, we are living longer not better. Acceptances.....

We went through this with my Gran. She was a dialysis patient, was completely with it mentally and so independent, but had gone through several strokes. Grandpa died 20 years ago, and she never even thought about anyone else, so she missed him terribly. She lived for her children and grandchildren, but after her 2nd to last stroke and the ESRD, she was just so tired, and sad, and uncomfortable, that she kept saying she wanted to Go Home and be with grandpa. Mom and I offered comfort, while a lot of relatives gave the "don't talk that way" speech. I didn't like hearing it, and didn't want her to go, but telling her that would have only increased her feeling of being a burden and having a poor quality of life, and given her a feeling of obligation to stick around for others, rather than for herself. This past spring she had a massive stroke, and ended up in hospice for almost 2 months, hooked up to machines, on comfort measures, unable to speak or move. But her mind was still there. It was her worst fear and the thing she did not want. All you can do is hold mom and tell her you know, you understand, you don't want to lose her but you know she is not happy. Sometimes giving them the permission to rest is all they need to be comfortable, and may even give them a renewed reason to fight a little longer, knowing that their loved ones "get it," aren't forcing them to fight, and to just enjoy her life as she can.
((((hug)))

Sometimes the only thing we can do is respect our parent's wishes. However, I would ask her to write down what she wants, have a lawyer or minister discuss it with her, have it witnessed, and keep several copies. Make HER give the copy of it to her doctor. This will either help your mother rethink her feelings or it will help you know that she wants you to let go of her. I spend over 8 months nursing my father who had specific, legal instructions regarding any illness. My mother and older brother ( a physician who can no longer practice) hid the living will. My mother trotted around with it in her little purse as she entered him into 8 care centers. In the end, Dad was at the hospital my brother practiced at for 40 years. I was approached by a group of his friends with the request to make him back off before he went in front of an ethics committee. My father ,who was functioning with normal intelligence ,asked me to stop the rescues from Code Blue situations and to allow him to die. He was an 84 WWII vet. As the youngest, I did not think I had any power. Actually the other medical staff became appalled by Dad's horrible quality of life, Dad and I agreed with them, and I was the only family member with him when he died holding my hand. I think I gave him the greatest gift I could. If you have siblings, talk to them and make your mom talk to them. I will be praying for each of you. Rebecca

Sometimes just letting our loved one talk and tell us how they feel can help, especially if their feelings are validated by the one listening. I would suggest an anti-depressant, perhaps a grief counselor for your mom may help. You can't give someone the will to live, but we can listen for the small cries for help that tell us they still have living left to do. Your mom is surely missing your dad and life seems really hard for her now. I wish you luck as you navigate this time in your mom's life.

Does your mom know that she has the right to terminate dialysis and use hospice to make her comfortable for her last days? If she chooses this, you can ease her end of life decisions by gathering family, making her environment pleasant with things she enjoys and reminiscing with her about the happiest times of her life. With our pets, you always hear that "they'll let you know when they're ready to go"--people are the same, but we don't want to hear their wishes.

Ask her stories of her childhood and write them down; ask for names on old family pictures so you don't lose that information when she passes; Do you have siblings? If so, let them know what she has told you, so if they have anything they want to say or ask, to do so; ask her if there are any family members she wants to talk to/visit with/etc.; Does she have a DNR in place? Does she have any burial wishes she wants made clear? In other words, help her (and you) prepare for what you both know is coming. Maybe once you start asking, she'll realize she doesn't want to die as much as she thought...or maybe it will give her some peace to let go. The doctors are there to "prolong life" at all costs, but at some point you have to ask if they are truly acting in the best interest of their patient or their own record. Prolonging life is not always the best option when the patient knows their own body - sometime letting nature take it's course is the best option. If your mother is ready there isn't going to be anyone on this earth that will keep her here when your Dad comes calling for her. ((hugs))

The end of life is such a sad, stressful time. We want to fix things to make them better, but sometimes we have to let the person who is dying be our coach. I wish I had some words of wisdom, but I don't. My mother often talks about wanting to die. With her I ask her if she wants to die today, and the answer is usually no, though sometimes she says she wouldn't mind. I am not being cruel when I ask her, but I know that the idea of death at a future time is not the same as the idea of immediate death. Since your mother is on dialysis, though, the question of dying today might be too relevant. Perhaps, though, you could see if you could help her to enjoy the day and put off dying until later. I wish that there was some way to help her enjoy the time she has left. It is hard to know what to do.