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i was told sheis slowly dieing and hospice is here but this disease pd is horrible it has been very hard to watch andave advanced stages of pd im so lost now thats it no more family i feel like a orphan but mostly i feel so sorry for my mom this is the hardest thing i have ever done oplease someone did anyones parent h

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My heart goes out to you. No doubt this is the hardest thing you have ever done. In the natural course of things children outlive their parents, so most people experience the death of one or both parents. That it is universal does not make it less painful. And watching the progression of a debilitating disease at the end is especially painful. Take advantage of the experienced hospice staff. They have helped people through this many times, and have a sense of what you are going through.

You have had your mother in your life for many years, and that is a blessing. Hard as it is on you, it is also a blessing to be able to be there for her in this last part of her life's journey.

Hang in there. You will get past this. You need time to heal.
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You just did, by venting it. You should call her doctor or your hospital and ask if they have support groups for you to attend. Sometimes support groups help. Your mother is very lucky to have someone like you to take care of her. I take care of my mother and she has dementia. I have people come in and stay with mom while my sister and me get out of the house twice a week, it's not easy to watch your love one change or think it would happen to her. But somehow we all get thru it and go on. Your not alone in this, we all are here because we have someone who have medical problems and we need to support each other to get thru our own problems.
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ANN:

As my Dad faded, it became more difficult to keep him comfortable and keep myself from unraveling. Running on fumes, my sons became my Higher Power. For me, then, family support was key. Months before he passed on, I don't know how many times I went through the Stages of Grief.

It wasn't until the last day when I finally accepted his life had come full circle. I was relieved ... for him.

This family will be here 24-7. Just holler okay?
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Hospice has wonderful counselors/socialworkers. The nurse comes to see my Mother at our home and the counselor comes to see me. She has been a tremendous help. And so is reading this website.
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I am very sorry that you have to go through this but your mom is so lucky that you are there, my mom lives with me and has many diseases including copd and diabetes and I know the day will come when I will have to do what you are doing, I think about it all the time and have done my share of crying and praying that God will keep me strong and get me through this because my mom needs me, lots of hugs and I will keep you in my prayers
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((((Sandra)))) The ladies have had excellent advice, hospice was there when Mom passed, they offer grief counseling, it helps to be able to talk about it, and share with someone who understands.. That is how I found this site, needing someone who understood what it was I was going through.. Big Hugs my friend, and know that we are here if you need to talk.
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I don't think you can ever COMPLETELY get over it. However, in time the pain will become less aND LESS UNBEARABLE AND BECOME MORE TOLERABLE. mY HEART GOES OUT TO YOU DEAR, IT REALLY DOES. i'M SADDENED BY YOUR LOSS. w
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I just lost my Mom in the same way. She began slowing down, stopped eating/drinking and eventually became bed bound. Hospice was there to guide us through the transition my Mom was going through. To be honest with you, we grieved. It is hard to watch your loved one go through something like this and you probably feel helpless and uncertain. I know I did. There is nothing wrong with how you are feeling and you should feel those feelings. You will get over it. It is different for everyone. Talk to the Social Worker or Chaplin that are assigned to your hospice. They are there to get you through this and know how to help you. And ask the Hospice people questions, any questions, they are there to help you too. You might also try writing down your feelings in a journal. This helped me too. Good luck to you, and know that this forum is a wonderful place to get inspiration and help.
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Sandra, please take comfort in the fact that you are able to be there for your Mom. For various reasons, not everyone is able to do what you are doing. I'm sure your mom is taking much comfort in the fact that you are there overseeing things, caring for her and making her transition as easy as it can possibly be. I will pray the Lord will give you the strength needed to get through this with your Mom. Take care and God Bless.
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I am grieving the lost of my uncle who died in his home Aug 1 and it's hard. I have to try and take care of my mother with the big help from my sister. My uncle survived colon cancer. He was like a father to us kids. The only "dad" I've ever known.
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These are all very sad stories indeed. Each very touching in their own way. W
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It is very hard, and my heart goes out to you. Although it was decades ago, I lost my mother after a long, slow battle with cancer, and my father after a long struggle following a stroke. I too felt like an orphan.
But to the excellent advice here, may I add some perspective that comes from time? It will get better. Not today, nor tomorrow, but eventually. My best advice is not to isolate yourself, even if you feel too bad to be in company. Accept help from hospice and others, gratefully. Surround yourself with family and friends who love you. And realize that we are all mortal, and many people understand and have been through what you are going through, even if some express themselves awkwardly. Involve yourself as much as possible with the world outside your door, and give as much of yourself as you can to everyone, not just your mother. Accept whatever love and support comes your way. Years from now, when the grief has subsided, you will honor her memory by living joyfully and fully. It is what she wants for you.
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Sandraann,
Prolonged grieving, the type of grieving that so many of us caregivers must endure, is very different from the standard grieving process that most people must face at the loss of a loved one.
Because the usual process of grieving can be interrupted by the length of time we must watch our parents die, and the various stages of grief are not able to proceed in the usual steps and tend to get all mixed up, we can suffer from some trauma that the standard process would help us to avoid.
I agree that you should speak to the Hospice folks and for some help for yourself to cope with this difficult time AND for when you must face the true grieving after her passing.
Stay strong.
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Praying to God to accept what is happening helps me. We cannot change the progression of disease and a lot of stress goes away when we accept things as they are. Guilt and fear are great destroyers. Just know that you have done all that you could do and that you are there to comfort your mom. It is in God's hands and you should take your troubles and hand them over to him...I wish you peace and comfort and brighter days ahead.
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As I read your question my heart went out to you. Last November 11, my father
passed and that was the hardest experience I have ever faced. He had lived
in my home for 14 years after my monther passed. He was active and gardened
and the last 4 years were so difficult, I stopped working and stayed with him with
some outside help. I was not prepared for the emotional loss at the end.
But I wanted to share with you that I immediately started teaching art classes
at the local Art Center ( I am a former art teacher) I found by getting out and
continuning in something that I loved helped with the emotional pain. I also
stated taking Yoga, and have focused on taking care of me....this 9 months
after and I have days of tears and emotional "fall-out" I really try to remember
the Great times we had not the last few months....although at first I had dreams
that disturbed my sleep. I am better now and miss him everyday but I am doing
things that I have always wanted even if I don't want to. When I teach I realize I
cannot focus on anyone except the students and find joy in their Joy of learning.
Please Honor YOURSELF if you want to cry or sit or walk ....Do what you need
and Know if you did not LOVE so deeply you would not hurt so deeply...and for
that I would not trade for anything....I was there because I loved and gave what
I had until the end...and I have peace in that. May you find blessings in this day.
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My dad has been bedridden for so long and my husband and I just moved in with my mother to help with him because she is so frail and tired from years of caring for him, I know that when the time comes for him to go, its going to hurt so bad and I will miss him, but I also know that lying in bed all the time is not living, and the pain he bares has to be horrible, his mind has been right for so long that I think he is getting dementia right now and its almost a blessing because he doesn't complain of pain anymore, its heartbreaking for him to be in so much pain and I'm not able to make him comfortable, and he would moan for hours even on medication....we will never be ready for our loved ones to go, but them being relieved of the pain and suffering is the true blessing, thats what I feel, i will certainly cry, and miss him terribly but use the time to let them know u love them and its ok to go home, we have no control over this, we have to learn that we have to think of them and how they feel and their pain and not ours...GOD will get us al thru it and all of us on this site can comfort each other....love u and GOD bless you and ur family....
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As other have said take advantage of hospice services. They are wonderful and can help you deal with your feelings. I have been there, it is one of the hardest things you'll ever face. Take care of yourself and don't feel guilty for taking time for yourself.
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Sand - I am going through the same thing !!! Hospice has been involved for a couple months now but just about 3 days ago my mom decided or can't eat or drink. Her meds have to be liquid (as you know prob) with a dropper. When we had to open the "comfort kit' and just couldn't handle it!!! Giving her morphine for the first time signaled I'm 'really' losing her - and just broke. I'm alone in caring for her outside of hospice here and there, and family every other week for a day.....so this transition is me leaning on my higher power for guidance and tuning into her needs before passing. Sometimes I don't even want to walk into her room for fear she passed......it's scary, confusing and breaking my heart. But 'we' will survive and better for it. You will be in my thoughts - stay soft and loving.
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All of the people who have commented on this are great folks with good insight and ideas for you. I can only offer that each of us needs to find our own path through this process. I am currently caring for my Father who is dealing with Dementia and just lost his license. I lost my wife to cancer after 32 years of marriage and it was a 3.5 year battle ending in hospice helping us. There are many resources that you can and should explore to help you get through this and the Hospice folks should be able to give you a few pointers and ideas. This web site is also very helpful and there are lots of people that want to help each other so please use this as a resource and open up and vent as much as you need to.
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I am not sure if u are an only or if u r the one doing the caring with hospice and others may be in denial....at any case, it is not easy. My mom passed two years ago, My dad passed 5 months ago tonight. I am an only. I fill orphaned, as well, we all do whether we have an abundance of siblings or just us. We all carry the grief differently. It is very hard. My dad went in for a colonscopy and never came out. his heart could not take it. He was in for 4 weeks, the first two, he was himself, writing checks, etc., we even ate all his favor foods. the day of the colonsyp. they found cancer, but the cancer did not do him in, 88 and heart did. He knew he was dying before he went down as he told me God will take real good care of you baby......he had premonition. It is hard to allow them to go....when it is time....I was so afraid, and alone, even with family...when they said it was near time, I went in by myself and went over our lives together from him and mom meeting, marrying, having me, our lives, etc., I told him I could not help him, and he missed mom ever so much....that when it was time and God wanted him I had to give him up to God, and yes, I cried. It was the toughest thing I did besides give up my mom from a stroke, two years before.....Just know that if your are keeping your mom's wishes alive and on the front burner, and doing all u can, in the end, when u look back, the regrets will be so few. GOD BLESS YOU.
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Bless you. I am so sorry for what you are going through. I also had to watch my mother die. It was awful. Now, my dad is fading as well and I don't have any sibblings to support me, so pretty much on my own as well. It just will take a lot of time to get better and it's right what others have said...what a gift that you were there for her and she knew that you have loved her whole-heartedly. I can't think of any greater gift. Take some time for yourself too. You are also important.
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I agree with 47 Hospice was a God-send to me and my family as my mom was in the dying process. Ask them to come be with her and talk to them yourself, ask them questions, they will quieten your process of going thru this.
Been there, done that.
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I just lost my mom to ALS at 4:25 a.m this morning. My sister and I were with her and it was so peaceful as she simply took one more breath and just died. It was wonderful to see how mom's poor, useless arms were not stiff anymore but was the hardest to see them take her away. I wouldn't let them zip her up and kissed her one last time on that sweet spot between chin and collar bone. It was a horrible disease that took my dear precious mother and I knew she was ready to die but I still feel selfish and want to take care of her for just a few more days
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I'm so sorry to hear of your Mom' passing, Karen. May God be your comfort, hope and strength. God Bless.
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Of course, we all know this day is coming. If we're lucky we have kept our parents, or one of them, longer than those of some of our friends, and we have witnessed the struggle from the sidelines..but then, it wasn't us. Now it's our turn.
A whole new set of feelings, and a situation we cannot resolve for the good of everyone. But then, I try to see it from the other side, and realize that it's selfish to try to shield myself from the pain of the situation, when she has given me her all and she is truly ready to be finished with her life. I want that for her, because she is tired. She has had to give up her "things" that she enjoyed having around her. She has stretched her funds as far as they would go and she now needs services from agencies, with people who don't really know her. She is beyond the ability to choose her place, her time, her daily life. These things are all planned without her input. She is fragile, isolated, and has outlived all her friends and family, as well as her eyesight and her hearing. I cannot give her these things back. All I can really do is insist that she be regarded as a valuable, beloved and respected woman with a powerful spirit, and try to comfort her and see to her needs as best I can, knowing her time is short and praying she feels no pain.
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Dear SandraAnn,
My name is Marianne. I took care of my mother physically by myself from 2004 to 2009 following her stroke and have watched closely as almost all of her faculties have slowly diminished. Yes, taking care of a parent we love and watching them go downhill is certainly one of the most difficult things we will ever do or experience--especially when we love our parents and family members. So much of what happens in the dying process, especially with cancer is difficult to face. There is no answer to "why"... But there are ways you can get through this better-- First, you need to enlist some help so that you can take a break-- while that may sound self-indulgent, it isn't, you need to take a step back during the day (maybe a couple of times) so you can respond to your mom's needs lovingly and with a clear head. In a sense, you (and your siblings?) are now "the parent" and are "in charge". If you have siblings who can help, that's great. I did not. My one sibling lives far away and could not "physically" be here to help me and before I nearly broke down under the emotional strain of caring for my mom fulltime. It happens and you need to be aware of that. So I finally began looking for and found others to help me--that is not always easy either. The folks from a local nursing home, hospital and hospice could point you to some in-home care "agencies" in your area and there are still others, perhaps a visiting nurses program from your local hospital where the nurse comes to your mother to change dressings, ets (?). Social Services (in our area) has been helpful. I don't know what kind of community you live in but if there is a church, synagogue, mosque or other organization, sometimes you can call a pastor or religious community leader(s) to ask for people-help...they are usually the ones who hear of the needs first and often have the resources to search out responsible people and community organizations who can help you--often, free of charge. Also organizations like Kiwanis and Rotary often help by sending volunteers to just simply sit with your loved one to give you a break, so that you can take a walk or simply get some sleep. There is something you may want to do and that is, get some grief counseling. It's not bad--and it doesn't hurt. It's hard to displace the feelings you are experiencing--I know it was awful for me. My mother is 102. When she was 99, I finally had to surrender her care to a nursing home and, because I could not physically see it thru to the end, I felt extremely guilty. I go now to her nursing home every day-- and interact with the nursing home personnel and there are a different set of problems. Your parent's pain is something I did not have to deal with, my mother was not in much pain (just emotional pain not being able to talk, etc.)-- but you might consult her physician to help her have relief for the physical pain. And you may want to consult your own physician to make sure you are maintaining your health and emotional balance while going thru this very, very tough time. It's not easy, especially for a person who has deep feelings for their parent. We may be societal "throw-backs" (someone once told me) because we want to care for our parents--I took on the job and I am not sorry. Sometimes it's very hard to admit that we are not completely capable of doing it all. After 7 years of trying, I know I am not completely capable. I did the best I could (most of the time). But I felt very badly when I had to "give up" 100% of her care--, and while I gave up most of the physical one-on-one care, I did not give up. I volunteer at her nursing home and go every evening to feed, diaper, and put her to bed. It is now what I can do for her. So my recommendation is, first, get some rest, then take a step back--assess your situation (vis a vis getting additional help in), do what you can do for your mom and enlist the help of others-- this is when you need to lean on others (maybe people you don't know yet, even!) for support. We will keep you and your dear mom in our thoughts.
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I did the same thing some years ago. I cried and prayed for her and the loss of her. I still have some teary moments, but would not exchange the time taking care of her for anything.
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My mother came to live with me last January. She was diagnosed with osteoporosis and multiple myeloma and I took her to chemo every Friday. I took 2 months of work with FMLA and every Friday for chemo. She went to the hospital in June and in July for blood transfusions. She was getting better but weak. On a Sat. I went in the morning and in the afternoon but ran errands instead of going back to the hospital Sat. night. She passed away in the night before I could get there. I feel horrible, guilty and sick about it. I wish I would have gone back. I wish I would have hugged her more. I didn't have a day off for 7 months and in the end went out to pull weeds a lot because I needed to get away. She noticed and mentioned it and now I feel horrible. I am angry at myself for not making my brother and sister help me. I asked several times but they were always too busy. I think if I would have had a break I could have taken better care of her (although I waited on her hand/foot and spoiled her) when I had her. Now I just despise myself. I am a single mother of four and the kids just don't understand. Love her and hug her lots while you have her!
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Forgive yourself. You did the best you can. Everyone needs breaks, you didn't take too many. And besides it sounds like you took incredible care of your mother.

The nursing home my aunt and father-in-law were in, said in their experience many older people go right after loved ones leave them for the day, perhaps wanting to spare them that part of death. Don't know if that was true but we were told my aunt could die at any moment. I told her brother was coming to see her one last time. He was 2 hours away. HE got there and spent some time with her. Then he left and told her he was getting something to eat but would return before he had to go home for the day. He came back and said good-bye and had to leave, as his ride had to go. She passed on right after we all left the nursing home. My father-in-law did the same thing.
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I just lost my mom recently and was also blessed to be there for here when it was her time. A lot of things just hit me still, missing the way she used to be, her house the way she kept it, all that. It is hard this way, because you are mourning losses and impending losses and caring for the person who is very much still here at the same time. Sure, some of the grieving and the giving up of things is done in advance - like selling the house - I think that was absolutely thye hardest part for me. I don't know that I will ever be over it. I keep trying to find ways to memorialize and find more meaning in all of it. Losing my Dad was hard too, but with him we had said all the good things that needed to be said and we didn't have so much unfinished business - Mom right up til the last days was still very much expecting everything to get better. And I even managed to be shocked when the end came very suddenly one morning in hospice, we had actually been making arrangements for longer-term residential care because she'd been a little more stable. I'm sure more time will help, but they are starting up a support group and I will definitely want to go. Staying on here just to share more of how we coped, what hurt so much, and what helped a little has been a plus for me. SO, hugs, and stay in touch - it really is very sad, sometimes you just have to let yourself be sad and cry a little, or a lot...God bless...
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