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marmmy Posted October 2008

I need some motivation. I think my mother-in-law is giving up on life.

I just left the hospital where my mother in law is in. It seems to my husband and myself she is giving up on life. She won't eat and barely drinks any water. She has quit communicating with me. How can I inspire her to live. Am I being selfish, if it is her wish to die, should I just let her go. I watch her get weaker everyday and I am getting to the point I really do not want to go, but I am her caregiver at home. I believe it comforts her that I am there. Please help me.

sunshinecaregiver Nov 2008
Troubled, may your Father rest in peace and may you find peace as you attempt to move forward in your life. May you find the wisdom you will need to decide what it is you wish to do in distributing the inheritance. Blessings and peace to you for doing the right thing by your Father when he was most vulnerable.

sunshinecaregiver Nov 2008
I just posted it under the title of "Caregiver Sunshine." I hope it is visible in the window of posts? It should be under Stress Relief grouping. Just finished!

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MrEldercare Nov 2008
Good point! Let us know where you post it so we can follow it there.

sunshinecaregiver Nov 2008
Wow, great questions. I will gladly answer, but may do so in a separate blog post to start a new discussion thread and avoid bogging this one down with a new topic.

MrEldercare Nov 2008
Thanks, Sunshine. Your heartfelt views are therapeutic and uplifting to overstressed caregivers. How do you keep that sunshine in your world when you've carried the caregiving load? Is it a natural disposition or something you developed within you over time?

Elizabeth Blackwell's study on the cellular impact of stress (She's at the University of California San Diego I think) shows it's not the stress of caregiving per se but how a caregiver views the demands causes the harm.

Sharing how you keep yourself motivated could unlock the door to a better life for others on this board.

sunshinecaregiver Nov 2008
Thank you, Martin. I speak from the heart, albeit a heart that is heavy from day-to-day. Still, there is tremendous sunshine in my world, for which I am grateful. Your words are very healing to my Spirit and I needed to hear those words. You are so right about viewing failure and weakness where there is none and when such a step is "way later than it should be." It is my pleasure to share from my heart and learn from others as well as my own online support group.

MrEldercare Nov 2008
Sunshine- Thanks for sharing your insight. The essence of caregiving IMHO is precisely as you stated - yo be a top notch health care advocate for a loved one. The health care system is not an easy one to navigate. Everyone's health needs are always slightly different. Even those suffering from the same disease will have different needs and respond to treatment in different ways.

You share a wonderful thought when you comment about the importance of listening and understanding our loved ones needs. To do otherwise is self-centered and selfish. Sometimes in a morbid way.

Some caregiving situation are so severe you will reach the point where providing the hands on care is too much to bear.

Making the decision to call in hired hands is not a sign of weakness or failure. Too often it's viewed that way. Typically, it's precisely the right step. Inevitably, it's taken way later than it should be.

You can only do as much as you can do.There is no law that says you must sacrifice yourself to prove your compassion.

The key as you so eloquently point out actively listening to the person we care for and help them live the best life they can under the circumstances. You've brought great wisdom to this exchange.

Martin

beachwalker Nov 2008
Dear Blondie, I really empathize with you about your sister's interference. That she wants to "pry" into your parent's finances is outrageous, unless your sister is homeless or facing dire medical bills for her children. And thinking she is OWED anything even worse. But if that is her truth, then you probably cannot change her. But you can protect your own self by not falling into her guilt trip trap.

You are doing the best you can, no one can ask more. Hopefully by you setting such a great example, your sis will realize her way is selfish and hurtful But don't hold your breath. I had a sister-in-law you kept telling me that she knew better than I what my late husband needed when he was slowly ( tho not painfully) dying of lymphoma. My sanity was saved by my minister and by our doctor who totally understood the situation and was supportive of me as the weeks went by.

I tried to maintain my cool and eventually s-i-l ( who thought she knew better than I because she had been a nurse long ago) stopped calling and went on to "advise" one of her neighbors.

Keep chatting with all of us here and venting, if need be, about your situation.

By the way, "sunshine" can anyone join your caregiver's support online group?
Sounds as if it would be helpful.
Beachwalker

sunshinecaregiver Nov 2008
It is therapeutic for me and very enlightening to read everyone's posts in this particular discussion thread. What comes to mind in all of this is that some of us caregivers choose, or sometimes learn, that the best caregiving to a loved one is simply to be the best patient advocate we can be. To me only, what that means is to always be active in listening and seeking to understand how our loved ones choose to live their lives. Once we make it to that place of acceptance, we then need to accept whatever our loved ones decide, regardless of how difficult it may be to watch. I look at it in terms of myself. I love my considerable freedoms and cannot imagine someone taking those away from me simply because I have become frail, ill, or weak in mind and/or body. In its less advanced stages, dementia robs some, not all cognitive capacity, which means that there are some freedoms which remain that I would never want to kill in my loved one's spirit. For some individuals, whether they are paid to be caregivers or not, like the pastor, for example, the caregiving experience becomes too much to observe because it is heartbreaking. Who wants to be on standby while watching a loved one, or anyone else suffer, for that matter? Years ago, a friend of mine and I were visiting one of our mutual friends who was hospitalized with multiple clots and indescribable pain that caused her to scream out loud each time the pain hit in spite of heavy prescription painkillers administered by hospital staff. Each time our friend screamed, my friend who stood next to me as a visitor in the room, literally froze and physically pulled back, eyes wide open, in a distant place. She did not do that because she did not care about our mutual friend. She did that because watching our friend suffer and scream was way more than she could handle. I understand that. A pastor is merely human like the rest of us and it sounds like the pastor needs a career change. I can't imagine paying a pastor to visit my loved one when there are so many pastors who make rounds to visit the sick and dying at no cost, as well they should given their calling.

The reality in all of this to me is that there comes a time when, if seeing what we are seeing and/or experiencing what we are experiencing in providing our tender loving care becomes too much for us to bear as individuals, whether in our hearts or our daily comings and goings, or in our dealings with our loved onesand other relatives, then we may be at that fork in the road where we need to accept that we have done all that we can and run to seek help from those who are paid to provide long-term care to others. Caregiving is incredibly complicated as everyone's posts establish. About a year ago, I started a small caregivers support group online and it helps to be able to share our thoughts and feelings on the common feelings and situations we share, just as I also do on this website. May God bless you, marmmy, blondie, and all of my fellow caregivers. Our journey is not for the fainthearted.

blondie97 Nov 2008
Hi all,
my dad went to the doctor yesterday, finally. He said we need to get the lifeline for him. My dad said no because when he goes he just wants to go. To make matters worse my sister is causing major problems and putting so much strain on the family. I ended up changing all my screen names and will have no contact with her at all. All she wants is what she thinks is OWED to her from Mom and Dad. She wants to know all about their finances and I told her they would tell her if they wanted to. I have to deal with this besides all the pain my father is going through.

Jessie Nov 2008
When my father apologized and said he was so tired there was really nothing I could do but understand. He was tired of pain, and laying in a bed day after day without mobility. You want to keep your loved one with you and the guilty feelings are normal, I felt them because I didn't want to be alone. Cancer is very painful, and I cant imagine having constant pain such as this. My only comfort is that he is no longer in pain. I let go, but not in my heart or mind, I see him all the time.

Jessie

EXPERT Carol Bradley Bursack, CDSGF Oct 2008
Once a person stops eating and drinking, organs shut down and they aren't hungry. We look at them and think they must be, but they are not. It's a peaceful way to go, sometimes avoiding worse pain, such as Beachwalker's mother. Her death was inevitable. Pancreatic cancer is horrible, and hopefully, she avoided prolonged physical pain.
Blessings,
Carol

beachwalker Oct 2008
Dear Janet, you are in a difficult position and only those of us who have gone through it ( or are still) can begin to understand how torn apart you must feel sometimes. It is exhausting physically and mentally to cope with your kind of situation! My personal experience caring for loved ones who are in their final months, weeks or days of life is that when the pain gets to be too much he/she wants to die and soon just to get away from the pain. My mother told me that she was only planning to stay alive long enough to care for her husband ( my dear step-father). As soon as he died she went to bed and refused everything except water and ice. She had pancreatic cancer and it progressed very rapidly after that. She had been a tough - meaning resilient resourceful smart lady and understood her options. It was very hard to watch her seem to just fade away to a shadow of her former self, but she had a tiny smile on her lips most of the time and at the end she just sighed and let go.
My thought for you are to be watchful and listen as much as you can without becoming exhausted yourself. Know that all rivers flow to the sea eventually ( that's how my Mother's minister phrased it and she loved that notion). Be peaceful and calm and hug those babies and little ones who affirm life just by romping around, and stroke the hands and lotion the feet of those who no longer romp.
We all just "carry on"... Beachwalker

EXPERT Carol Bradley Bursack, CDSGF Oct 2008
Welcome to the forum, Mr. Eldercare! Folks, Mr. Eldercare has a very good radio show (I've been honored to be a guest before, and will be on his show again on Nov. 1. It's internet accessible, so many of you could listen if you have time. He has a wide variety of helpful people on, and it is archived.

Carol

MrEldercare Oct 2008
Marmmy, I see your post is about 4 days old now. How you and your mother-in-law doing? You didn't mention your mom's age or health issues, but
from what see you care about her a lot.

You're fortunate to have a mother-in-law you truly care about.
Most are not so lucky.

You asked for motivation and state you "are getting to a point you don't want to go". Watching someone die is very difficult. No one can blame you for
not wanting to go to witness it.

You've received some excellent responses to you post. As Carol points
out dying is part of life. American's have become insulated from it. Modern medicine has learned how to defeat and manage so many diseases it's easy to
view is a miraculously mender.

It's not.

It can only do so much. And so can you.

Visit with the chaplain. If you haven't done so already visit with hospice as well. It's a remarkable service that can make you life and the final days of your
mother-in-law as comfortable as possible

I wish you the very best.

EXPERT Carol Bradley Bursack, CDSGF Oct 2008
It doesn't sound mean. You are being realistic. Often elders feel that it is their time to go. Our medical system is trained to keep people alive, and that's great. But many people live with a low quality of life that they find unacceptable. If a person is at that point, and they ask their loved ones to just "let them go," it may not be depression. It may be exactly how they feel.

My mother wanted to go long before her body allowed it. She'd even say, "Can't you just give me a little black pill, so this will be over?" I would have to tell her that we'll do all we can to make her comfortable. But I never told her "not to talk that way." That was how she felt. I tried to bring her everything she needed and worked with staff to manage her pain, but she was never truly in a good place until she was ready for hospice. Then things improved for her, as her pain was managed better. But she was still ready to go (by then my dad had died, and I believe she wanted to follow."

We all need to realize that death is part of the life cycle. Our society struggles so to deny that fact. Sometimes people have lived a full life and are ready to move on. This can be especially true for those who believe in a spiritual life after the physical life has ended. We need to do everything we can to make their physical life worth living, but they have a right to their thoughts, as well.

No guilt need be felt by the caregiver, if this is where the situation happens to be. If there is potential for quality of life and the person is depressed, obviously medical intervention and an antidepressant could be in order. I'm talking about someone whose quality of life is very poor and there's no medical way to make it better.
Carol

southie97 Oct 2008
For Marmmy,
I know I will be in your position someday and I have thought of this many times. I know this may sound mean but if that was my fathers wish i think i would let him go. He was always a strong, proud, independent man. Now he just sits all day and is afraid to go out because he doesn't want to fall. He has lost all independance. He can not drive or go anywhere by himself. My mother and he have been married over 55 years and they are still very much in love as I hear them tell each other all the time. As I said I would respect my Dads wishes and grieve in private while being there for him.

EXPERT Carol Bradley Bursack, CDSGF Oct 2008
Hi Janet,
You've got a big heart and are making the best of a tough situation. Please try to take care of yourself, and know we'll be here to listen.
Carol

southie97 Oct 2008
I could never put them in assisted living. my mom would never last without the family with her. My daughter, her husband and my grandson also live here and the only time my dad smiles is when he sees the baby. He adores him and the baby just goes crazy over them too!! I can't say it's always bad. We do have fun times, but my Dad is lonely. Almost all of his friends have passed away and he doesn't understand why he's still around. he has terrible pain and the doctors will not operate because of the shape he is in. I got laid off 6 weeks ago and I know my mother loved me being home. I have a new job and start work on Wednesday. It will be hard for her all over again. She gets the worst of it and I'm glad we are here to support her as she has MS and does everything for him. Thank you for listening Janet

EXPERT Carol Bradley Bursack, CDSGF Oct 2008
The priest is unbelievable! Can you find another? They are human, too, and this one can't deal with the situation.

For your own sake, you may have to sell the house and move them into assisted living or something. You can only take so much. Bless the brother who supports you. Keep coming back here. We can't change it for you, but we can listen.
Carol

southie97 Oct 2008
You hit it well! When he does go to the doctor's we have strict orders to not say anything even if the doctor asks me or my mother. I get the doctor outside but he has caught on to that too! We did have someone come in from visiting nurses but as you say all is fine when they are here. Even my sister has been fooled by him. She said I choose to take care of them so now i have to live with the chose although she always puts her opinion into everything she never comes over except for holidays for dinner. My brother does have sympathy but with 4 kids and he is the only one working he does come over and call. My sister is very bitter because we moved into a house that is pretty big to be suitable for my Mom and Dad. I had the priest coming over but he said all my father talks about is dying so he doesn't like coming here! Can you believe it!! My Mom gives him $25 everytime he comes and he said that! My dad said he is only here because of my Mom and if she goes before him he does not want to live with me. I am to put him in a nursing home. Thank you for your letter

EXPERT Carol Bradley Bursack, CDSGF Oct 2008
If you could get him to see a doctor, an antidepressant may help. He's obviously giving up on life. The fact that he apologizes after being verbally abusive shows that some cognitive ability is there, but he's angry and takes it out on those closest to him.

You and your mother would do better by telling him you won't be treated like that, and walking away (easier for you than your mother - maybe she could have an open invitation to go to your house?).

His pain, physical and mental, is making his life seem not worth living. If the pain and depression were controlled, he may feel differently. Is there a spritual leader or a good friend who could talk him into seeing a doctor?

The guilt isn't yours or your mother's, if he won't go and just withers away. If he doesn't eat and doesn't drink fluids, his body will eventually start shutting down. He must be getting enough to keep living, if only marginally so.

Since he is nice to others, that also shows some control over his behavior (many with dementia are wonderful to their "guests" and even to doctors, and then the caregivers are judged as being "bad." That's very common). So, dementia of some type is still possible, even with some control over how he behaves. If he thinks you and your mother will stop being his whipping posts, he may shape up for a little while. The whole thing would have to be repeated as old habits die hard.

If you can find someone outside the family to talk with him and get him medical help, that would be ideal. He won't likely listen to you or your mother. That way he has someone to blame.

Blessings to you. You are trying to help them. Some people just won't be helped. You could try a welfare check - having the social services people come and evaluate him, or even the Alzheimer's Assosciation in your area, but he may not allow that, and if your mother covers for him (a habit), they won't get a true picture, anyway. He'll act charming, the house will be fine, and they may not be able to do anything.

Again, I encourage you to try a trusted (by him) friend or professional. That's probably your best hope.
Carol

southie97 Oct 2008
My father and mother live in an in-law apartment. My father calls it the cellar, he has asked me several times to find someone to tell him how to die. He doesn't go out and the only time my Mom goes out is either with me or to the doctors. He is verbally cruel to me and my mother but nice to everyone else. He barely eats and is in constant pain. He needs an operation on his heart and shoulder but the doctors said at 80 years old he would not make it through. He is He knows he is verbally abusive and apoligizes after he says such cruel things. My dad said he is only here for mom and she won't let him"leave". I guess what i'm trying to say is my Dad wants to go too and I sometimes wonder how long this depression will be in control?

EXPERT Carol Bradley Bursack, CDSGF Oct 2008
Please understand that some people are ready to give up. It's their choice. When my grandmother was dying, she told my mother, "I've done all I want to do. I've had a long life. Please just let me go."

I don't have enough information about her history to be too helpful, but these are some thoughts from my experience:

If your mother-in-law can be encouraged to eat and drink, she may get stronger. However, she may be doing as she wishes. Do you know what her wishes have been all along? Before she got sick? Did she want life-saving measures taken if she was in this condition, at this age? That's a huge help for the caregiver. That is why we all need to make out a living will or better yet, a health directive, and give it to our families and to our health providers.

It sounds like you don't have this. Think back on conversations you've had with her through the years. What has she said about friends or relatives when they've reached similar situations? Try hard to think what she would want and abide by that. If she would want life-saving measures, and coaching and encouraging her to eat and drink don't work, you will want to tell the doctor that.

If she would have wanted to go "when she was ready," she will not be uncomfortable as her body shuts down. That is natural for the body. If the organs can't do their work, food and even water can be negative and prolong her dying process. Keeping her mouth moist with swabs and a few ice chips if she seems to like that, can be helpful. Just talking with hospice at this time could help you greatly. They will understand what is happening to her.

Blessings to you in this difficult time. It's horribly hard to watch them slip away. But the final moments can be beautiful, especially if you know she is "going home" and that is her choice. I encourage you to talk with hospice right away. Their chaplain could help you a lot right now, and their medical knowledge will help you make the right decision.

Carol

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