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I posted earlier this week that we had found a new normal, but I was waiting for the other shoe to drop. Well, the shoe quietly dropped. Mom as I mentioned her breathing is getting worse. Its nothing too dramatic, just retaining water and its begun to build in her lungs a bit. From not monitoring water intake for a dialysis patient is a no-no. The doctor gently told her that she needed to improve her self care. She told him that she felt that she is nearing the end of her life and she sometimes felt that she deserved to eat and drink what she wants. He told her she could prolong her life if she did a few things differently.

On the ride home she indicated that on a scale of 1-10 with 1 being not wanting to live and 10 being willingness to do whatever she could to continue to live, she said she was only a 3. She was tired of her life being hard. She misses my dad who died in March and that she didn't want to tell me because it makes me sad.

I guess I was right to contact palliative care. Her health is bad, but I suspect depression. She feels crappy most of the time and she is lonely and grieving.

I am depressed and grieving too. I'm okay, but it's wearing on me. I'm looking forward to some peace.

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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.
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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))
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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.
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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)))
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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.
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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.
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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
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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.
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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!
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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.
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