Mom is steadily getting weaker from ALS

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dldred

Senior member
Joined
Mar 31, 2009
Messages
531
Reason
Lost a loved one
Diagnosis
03/2009
Country
US
State
NY
City
Chateaugay
My mom is steadily getting weaker now, and I know I have to face the horrible reality of losing her. I am feeling guilty because in some way it will be a relief. She will no longer be trapped in a body that can't move or function. My father (her only caregiver, by their choice) will have time for himself and not have to be at home every day. I feel really awful for thinking this way and wonder if I am the only one to think like this. Thanks for taking time to read this, I hope it doesn't sound as nasty as I think it does.

Dana
 
Re: Feeling Guilty

I hope my children will feel relief when I am gone my husband is also my caregiver and I hope he will have the time to do some travelling after I am gone.. Sure I want them to think of me once in awhile but don't feel bad because I will be in a better place. If you could ask your mom I bet she wouldn't want to come back for the life she was living. When my mother died it was a relief and she didn't have als but she was in the nursing home. So don't feel bad just enjoy the memories you have of her that is my wish for my family.
 
Re: Feeling Guilty

There was a really good thread on this a couple years ago. I'm going to cheat and use my response I wrote then I also included the link to it, there was some really good discussion in it. Although I'm sure there are lots of people in here today that want to share their feelings with you because they are experiencing the same things as you are. You have NO reason to feel guilty it is very normal and I think we all have/had those feelings at one point or another..

Copy----
-----What a roller coaster thread. While I'm sure every caregiver will readily acknowledge they are in a better position than the person with als, that doesn't mean being a caregiver isn't the hardest jobs they will ever have. It also comes with a range of emotions that are just indescribable. It is heartbreaking to watch a person you love with all your heart deteriorate in front of your eyes.

I was my mother's primary caregiver. I have never considered or tried to portray myself as a martyr, I have however shared with close friends and my sister feelings of resentment that built up over time. Those feelings were immediately followed by guilt. I knew my mom wasn't intentionally causing me such heartache. I knew mom NEVER wanted to become a burden. I use the word burden but I didn't always feel burdeoned, but there were days when I hadn't had a break for over a week and had not slept more than 45 consecutive minutes where sleep deprivation takes over and you feel so worn out that those types of feelings are just natural.

I would say overwhelmed is probably a much better description than burdened. I am not a nurse, I have no training in health care and there were many times when it got just plain scary for me. I laid in bed at night listening to my mom choke and gasp and moan. I would run down stairs to her aid 10-20 times every night sometimes for no reason, sometimes to find her genuinely choking or unable to breathe. The range of emotions from seeing someone you love in that state are indescribable. The feeling of helplessness after trying everything you know how is just plain scary.

Feeling resentment even for a brief moment does not mean we don't love our PALS, does not mean our hearts don't break for what they are going through, and certainly doesn't mean we lose sight of how hard it must be for them.

Burden and resentment are two words that I was scared to say out loud because they sounded so awful. They are things I felt but only for short periods. If a PALS feels insulted or irritated by them let me tell you a few more words. Love, commitment, dedication, and did I mention love? Because those are the words and feelings that I felt most often and the feelings I have now that she has passed.



Original Thread: https://www.alsforums.com/forum/als-caregiver-support/7857-caregiver-resentment.html
 
Re: Feeling Guilty

Thank you for understanding, I cried when I read your post because I know my mom would not want to live this way again. She told me before she is not afraid to die and knows there is something better waiting for her. That does help her and us to deal with all of this. Thanks again for your help caldona, you don't know what that means to me.

Dana
 
Re: Feeling Guilty

I feel the same way. I feel selfish for feeling this way too. My husband thinks he wants to keep me as long as he possibly can but I know it will be good for him to get on with his life. The rest of my family too. And me! I do not want to linger.

Don't feel guilty Dear.

Much love and God's comfort to you and your family
 
Re: Feeling Guilty

I remember having a long talk with our hospice nurse, saying that even though we knew what it meant, we were ready for it to be over. (Even though none of us is ever really ready) I told her I felt awful for feeling that way. She said that feeling of relief was actually a good thing... that if we wanted to go the way we were indefinitly .. or wanting Glen to go on that way... would have worried her much more. Most of us have those feelings somewhere on this road... it's ok.
 
Re: Feeling Guilty

Thank you all for your help, it is nice to know I can come on here and find people who understand how I feel. I would love to keep my mom with me forever but that is just selfish of me. I can't ask her to keep fighting just because I want her to. She is growing more and more tired everyday and when she is ready to go I will accept that and try to deal with it the best I can and keep the good memories with me forever.

Dana
 
Re: Feeling Guilty

I'm thankful for reading your post, Dana and the posts of those who responded. My sister-in-law noticed I was in a pissy mood (she was spot on) and asked me about it. I told her that everything is hard and I'm overwhelmed. She basically told me to buck up. It hurt me so badly. I am struggling with being too hard on myself, always doubting myself as a mother and wife then to hear what she was saying - well I wanted to throw up. She said its hard on everyone and that I should put myself in his shoes. How would I react if I were the one dying? There was no winning with her so I just sat there quietly, crying of course, as she went on and on. She is here almost every morning to help me with the boys- get them off to school/daycare and then she helps with showering Josh before she hits the gym. She is not here 24/7 like I am. And don't get me wrong- I want to be here with my husband but I'm only human. She even had suggestions on how to deal with the boys. URGH! She is ten years younger than Josh and doesn't have kids-nor I don't think she ever will so of course its easy for her to discipline and suggest what I can do differently so the boys mind better. Man oh man! it was a tough morning.
 
Re: Feeling Guilty

Yes, it is hard on everyone. You, him, her, the kids, the dogs and cats, everyone that cares. In reality all we all can do is "buck up" but you were due some sympathy at that moment rather than her stern tone. A hug would have been nice, eh? I too almost wish I could get this over with. But I'm going to fight to survive until I just can't do it anymore. May God give us all strength and comfort during this journey home.
 
Re: Feeling Guilty

Maybe you should set some ground rules for your sister-in-law tell her you really appreciate her help but you know what you think is best and none of us is perfect in raising our kids we just do our best.
 
Re: Feeling Guilty

I learned a long time ago serving in the military, there is a difference between quantity of life and quality of life. Don't feel guilty. I know that through this journey for me it is going to be difficult both physically and mentally, but for my loved ones it is going to be both for a much longer time. The only thing that I look forward to, and hopefully as far down the road as possible, is that my wife and kids who take care of me have a sense of relief and try to get back to normal. There is nothing to feel guilty about it is natural. I know this is hard but that is why sissy's don't get ALS or become Caregivers.
 
Re: Feeling Guilty

Thank you for posting. You are not alone. When my grandmother was in her last days I just wished for her suffering to be over. She didn't have ALS, but my husband does, and I think of my grandmother's discomfort and realize that I don't want my husband to suffer. He is only just diagnosed in May 2011, however I think of what is ahead and I find myself asking God for a long time together (even a miracle and take this away), but when the horrible last effects of the disease begin, I ask God to take him to end his suffering and find peace in heaven.
 
Re: Feeling Guilty

Thank you everyone for your help, I know I can always find someone here who understands exactly how I feel. You don't realize how helpful and comforting it is to be able to come here and talk to people who are going through the same things as we are.
Thanks again for the comforting words.

Dana
 
Re: Feeling Guilty

I think we have a different way of thinking or feeling when we are dealing with the way of losing someone we love. I don´t want to judge anyone but would you think this way if this was your son or your daughter who had this sickness. I just wanted to share the story of my best friend that became a mother of a very sick boy when she was only 22 years old.
When the boy was only 1 month old he start having epileptic attacks. The doctors tried every drug known to man to stop them,but nothing helped. with every attack his brain got more and more damage. we both had sons at the same time so we could see the difference in there devolvement. He never held his head, started to inhale his food and had to be inserted a feeding tube. He stop breathing many, many time but always brought back. He could not talk or walk or do anything but watch, listen and sometimes his mom got a smile from him,but she never knew if that was really coming from him or just some reflection that his body did. Many, many people judge her and said that she was selfish to keep him alive,but she always sad that at least he had his mothers love and she would never give up on him. She never slept, had little help. Then this brave girl had cancer that she bravely fought and won. But the story of her little boy ended when he was 11 years old in a airplane coming home from Florida where he went to Disneyland with his parents, he went to sleep and never woke up. His mother is sure that this was his way to tell her that he did not wanted to be saved this time. High up in the sky. My friend was always sure that his mind was fully working and he was a prisoner of his body,very much like people with ALS. My friend never complained or said why me and she has told me many times she never thought to give up. I just know that we are all different and have a different look at life and what life is.My best friends live was her son.
 
Re: Feeling Guilty

Island, you are correct about the mother/child bond. I was 19 years old when my oldest child was diagnosed with leukemia. It was a very long road, (2 years of treacherous treatments, twice). I never asked why, nor was there any question I'd do anything under the sun for him. Taking on the care of my mother, whom I love very much, is just different. There is no comparison, really.
 
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