nightmares

[hopealive]

Hello to my CAL friends.

I am up late, was awoken again by a horrible nightmare. I wasn't sure if I should even share this but, was hoping that someone might have some words of encouragement that this too shall pass.

My mother passed away February 28,2009 she has bulbar onset ALS for a little over 3 years. She was doing really, really well up until about November of 08' things seemed to decline rapidly from there. In her final weeks she was having what she called " panic attacks" or anxiety, having trouble catching her breath. My mother was not an anxious person so I knew, this was all part of the respiratory failure. So, hospice was called and we began the regimen of giving her morphine to help with those episodes. Such a sick feeling I have right now, I am so glad that morphine took away that sensation but, really she was just unable to breathe. Watching her go through this was horrendous. Mom never complained but at times just a single tear would trickle down her cheeck, she was scared and struggling. Just a trip to the bathroom would leave her panting.

Mom had a rough night her last night on this earth. Our caregiver was up with her most of the evening, having several breathless episodes and giving more and more morphine. This was the very first time mom wasn't able to walk to the bathroom, she had to be carried by my father and our caregiver. Mom finally settled in to sleep around 5am with her bi-pap on, and about 10am our caregiver who was sleeping at the foot of mom's bed was awoken by the machine making the strange noise it makes when a breath is not being taken.

As far as everything we know about morphine, respiratory failure, CO2 levels there really is no reason to believe that mom had any struggle right there at the end. I however cannot stop thinking and dreaming that there was a struggle and our caregiver just didn't hear it.

I have had so many horrible dreams that she is in pain, agony, cannot move or speak to let us know. I have dreams of giving her shots to make the pain stop, to make the struggle end. I have dreams of her just crying out over and over.

It is strange in the first weeks after she passed, I actually felt a sense of joy, for her that the struggle was over. Now, I just cannot stop re-living those last weeks, I just am not able to see how witnessing that isn't going to haunt me forever.

I am feeling angrier now than I ever was during the whole illness. Why did she have to suffer? Why am I feeling so helpless now? Why now that the battle is over?

Thank you for your support.

Love,
Holly
Daughter of PAL. passed 2/28/09

 

[judylyne]

I have had dreams of trying to save my husband from dangers. So have my children. Special dates such as his birthday and fathers day make them more common. It is distessing but try to believe she didn't suffer because I worked as a hospice nurse and I don't think she suffered. Judy

 

[mare]

Holly,
I am so sorry you are struggling like this; but I agree with Judylyne. I was an RN in an ICU, and had many patients in end stages of respiratory failure. Patients would quietly and peacefully "slip-away". There was no struggle for them.

I think this could be part of the stages of grief. Perhaps you can check to see if there is a bereavement group in your area, sponsored by the clinic where she went. If not, maybe the clinic had a mental health counselor you could contact. I believe they usually follow-up with families.

I wish I had the words to comfort you at this time. I'll remember you and your family in my prayers.
mare

 

[Zaphoon]

Holly,

I'm very sorry your mother suffered with ALS. The pain of losing a loved one has a tendency to take a while to get over.

I agree with Mare. It would be very beneficial to speak with a grief counselor.

Please be encouraged with the thought that you, the caregiver and all else who helped care for your mom did the best they could to keep her as comfortable as possible.

Her suffering is over now and I'm sure she appreciates everything you did for her.

Zaphoon

 

[brooksea]

Holly,

I'm very sorry you are having such dreams. Your mother was blessed to have a wonderful loving daughter and I'm sure she would want you to think of her with happy thoughts.

I agree with mare about getting with a counselor to help you sort through these feelings so you will be able to be at peace.

 

[abbas child]

Holly, I'm so sorry for the loss of your mother. I very much agree that this is a stage of grief that you're going through. It's clear that you took very good care of her, and also clear that she needed the morphine which she was given. I've read elsewhere that often a patient waits until no one is present to die. I assume this is possible, and may be what your mother chose.

One thing about having this disease or being the caregiving loved one, in my opinion, is that there is a terrible ease of feeling guilty no matter what choice we make. I've been a caregiver, tried to be as good and loving as possible, and while there was a sense of wonderful peace shortly after death, knowing she was a believer and in heaven, later I did remember and question some things. Finally, now having ALS and being the one sick, I see the other side--a case can always be made for feeling guilt. Please give yourself grace and remember how much suffering your mother has left behind.

 

[hope_faith]

Hi Holly, I'm so sorry for the loss of your mother and that you're having these nightmares. Please try not to torture yourself with wondering if your mom struggled before she died. I agree with what the others have said before me, that this is one of the stages of grief, and think maybe a bereavement support group might help, or talking with a grief counselor. I believe Hospice usually provides this.

Keeping you in my prayers~

 

[Jeannie]

Dear Holly~
I am so sorry for the loss of your Mom. I agree with the others that your feelings are part of the grief process. There are so many organizations out there that help people deal with their grief and work through the whole process. You are in my thoughts and prayers. Your mom was lucky to have you
In friendship
Jeannie

 

[hopealive]

Thank you all so much for your encouragement. I suppose this is part of the greiving process, just not a very good part.
Mare, I appreciate knowing that as an RN you feel that she just slipped away. I so pray this was the case. It would be exactly like her to wait until all eyes were off of her to slip away. That was just her way, she was strong and had such a quiet dignity. Oh man how I miss her!
Abbas Child, it is interesting to hear your perspective and I thank you for sharing. I pray you are not enduring too much suffering and that God is giving you the grace you need for each day.
I have been to a hospice support group, however perhaps I went too soon. It was so sad, everyone experiencing deep loss, one big cry fest. I may be ready now to do some individual counseling. Thanks for the encouragment.
If I have learned anything from ALS it is that we as a group of people are so much stronger than this disease ever could be.
Thank YOU!

 

[kylisa]

Oh, my God! This is what I am facing right now, my mother is experiencing what you have described. I hope that I do not start dreaming about her once the Lord takes her. I already dream of her but not of her being in the shape she is. I hope you find peace soon.

Hello to my CAL friends.

I am up late, was awoken again by a horrible nightmare. I wasn't sure if I should even share this but, was hoping that someone might have some words of encouragement that this too shall pass.

My mother passed away February 28,2009 she has bulbar onset ALS for a little over 3 years. She was doing really, really well up until about November of 08' things seemed to decline rapidly from there. In her final weeks she was having what she called " panic attacks" or anxiety, having trouble catching her breath. My mother was not an anxious person so I knew, this was all part of the respiratory failure. So, hospice was called and we began the regimen of giving her morphine to help with those episodes. Such a sick feeling I have right now, I am so glad that morphine took away that sensation but, really she was just unable to breathe. Watching her go through this was horrendous. Mom never complained but at times just a single tear would trickle down her cheeck, she was scared and struggling. Just a trip to the bathroom would leave her panting.

Mom had a rough night her last night on this earth. Our caregiver was up with her most of the evening, having several breathless episodes and giving more and more morphine. This was the very first time mom wasn't able to walk to the bathroom, she had to be carried by my father and our caregiver. Mom finally settled in to sleep around 5am with her bi-pap on, and about 10am our caregiver who was sleeping at the foot of mom's bed was awoken by the machine making the strange noise it makes when a breath is not being taken.

As far as everything we know about morphine, respiratory failure, CO2 levels there really is no reason to believe that mom had any struggle right there at the end. I however cannot stop thinking and dreaming that there was a struggle and our caregiver just didn't hear it.

I have had so many horrible dreams that she is in pain, agony, cannot move or speak to let us know. I have dreams of giving her shots to make the pain stop, to make the struggle end. I have dreams of her just crying out over and over.

It is strange in the first weeks after she passed, I actually felt a sense of joy, for her that the struggle was over. Now, I just cannot stop re-living those last weeks, I just am not able to see how witnessing that isn't going to haunt me forever.

I am feeling angrier now than I ever was during the whole illness. Why did she have to suffer? Why am I feeling so helpless now? Why now that the battle is over?

Thank you for your support.

Love,
Holly
Daughter of PAL. passed 2/28/09

 

[hopealive]

Oh Kylisa, I am so sorry.

If you have any questions or just want to talk feel free to get a hold of me o.k.? I am thinking and praying for you and your mother.

Love,
Holly

 

[waterdreamer]

I am so sorry about everyone's stories here. For years, I kept having dreams about my mother, when she was "normal". It was tormenting me. I had these dreams where she is talking normally and walking and everything, but it is present day. Right now she's going through a really rough time and, I strangely, I haven't had those dreams lately.