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Dec 3, 2006
Loved one DX
Lake Orion
I don't know if this is a good place to put this, but I don't know of any other places that people have discussed this kind of thing. As some of you know, my father passed away 5 weeks ago today from ALS (3 years fight with Bulbar ALS). For those that have lost a loved one with this horrible disease, how did you cope with it? I'm still having a lot of trouble. I'm back to school (and have been for about 3 weeks now), but I still get overwhelmed a lot. It's been very difficult to concentrate on things. I toss and turn all night (it's hard to get a good night's sleep). Many times when I close my eyes all I can see is him from the night he died, looking pale and cold.

Mom is also not doing well. She's been very difficult to deal with. She has taken a lot of her grief out on me and it hurts a lot. She's done this the past three years (aka throughout the whole ordeal).

I've had some very negative and non-reasonable thoughts. I just need to know if other people have felt like this and how you got through it. I have a loving husband, but I feel like maybe he's even getting sick of hearing how sad I am and seeing me cry....

Please, just tell me how you coped with this loss.
Hello Buf,
I lost my husband to ALS and I know how you feel. It is very difficult, I also have a hard time sleeping. There are some books that helped me a lot, like "we do not die". I am also part of a support group because I found I needed to talk to people that were going trough the same experience of loosing a loved one.

Take good care and asking for help and support during this very difficult time of your life is very important.
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Hi buf68. Are there any grief counselling groups nearby that you could attend. If your dad was registered with ALSA/MDA they may have groups that can help you and your mom work through this difficult time. Also the funeral homes may have contacts for groups. A lot of people need help dealing with these issues and it is nothing to be shy or embarrassed about talking about.
Hi Buf68,

Grief counseling could be very helpful for you. I also want to say, though, that what you are going through is absolutely normal. You have suffered an enormous loss, and it takes time to regain strength and balance. The ways people cope with death are as different as the ways people are... Here are some of the ways I have coped with the deaths of loved ones:

I prayed a lot, still do, for the soul of he/she whom had died, but also for myself and for everyone else who also lost that person. I also talk to that person, sending him/her all of my love and I try to be open to receiving their love in return.

Reading things like what are on the links Sunny sent -- I needed assurance that death is not the final goodbye. I was also open to and looked for signs that the spirits of those I love are still with me.

I cried...and cried and cried and cried. I laughed at good memories. I, um, had a little too much to drink once in awhile. I talked to people who understood and who could empathize (much like you have done with your post).

I got a massage and took walks in nature. I tried to have fun. I tried to let go of any guilt I was harboring. I tried to express, then release, any anger I was feeling.

I tried my best to keep my faith that I would get through my grief. I tried my best to acknowledge and appreciate the love, goodness and beauty that is still in my life. And, as time went on, I have rest assured (usually) that love really does not die, and that my relationships with those who have passed, although changed, are still very much real and even able to still grow. But, before I was able to rest, I had to go through the pain. And it still hurts at times.

This was a very good place to put your post. Have patience and be good to yourself. It's only been five weeks, that is not very much time at all. You are in my prayers.

I would like to recommend a book "Who dies?" By Stephen Levine. It has helped me and my husband a great deal and contains meditations for working with grief.


Hi Buf68. I am so sorry this is happening to you and your mother. You did the right thing to reach out. Please understand that, although you feel alone and awful right now, you will feel better as time passes. It is a process.

Come to us anytime you need to reach out. If you decide to get face-to-face support, let us know who it goes. We are with you!:) regards, Cindy
Dear Buff68, It is still so soon for you. 5 weeks is almost no time at all. You may have felt numb at first and the grief is washing over and through you more now than even it was at first. This is not unusual. I am thinking of you and hope that your relationship with your mother becomes easier as she works through her own grief. It sounds like she is displacing anger about her loss onto you. This would be very hard to deal with, especially when you are feeling so vulnerable. All the suggestions from people in previous posts about how to get emotional support are right on. I am continually grateful for the wisdom and care of the people here.

There is a message close to home for me in your post, that I must look at honestly. Since my dad died, I have been very hard on my son, trying to make him do better in school. I think I am trying to make him be like my dad, who was an incredibly intelligent and dedicated person. My son is a kind of dreamer, not very much like my dad though they enjoyed playing chess together. He just about gave up and retreated into his books and games, doing no homework for a month after my dad died. I didn't figure it out until a teacher called to tell me he was failing her class. I didn't deal with it well. He is still struggling. I need to find more effective ways to help him than just cracking down. My grief about my dad is all mixed up with my pain at seeing my son fail.
Holly-don;t be too hard on yourself. You are all in grief right now. I admire your resolve to look at your actions honestly. If we all did that more often we'd be better for it. take care and thank you for sharing. Cindy
Thanks everyone. I'm having a very emotional week all around. I've had a lot of little things lately and money issues personally so the stress isn't helping much. I have a huge "exam" next week that I have to pass to continue my PhD program, so I'm really on edge. I'm just not sure yet that I want to talk to a counselor or anything. I feel kinda odd sharing with people who i've never met and who don't really know what went on. We talked about the night he died last night with a friend that came over and i think it made me not able to sleep last night and depressed today....I guess it's just a day at a time....
You are right about the "one day at a time" thing. And don't discount the stess, either. When dealing with grief you have to take extra care of yourself and on top of it all you have a heavy load on your plate. Get extra rest, cut down on caffine and alcohol (Did I say that?:-D ) and do something special for yourself. Regards, Cindy
delayed grief

i lost a husband 12 years ago to lukemia and was just numb for months afterwards. i lived in a town where i had no relatives, and all of our 'couple' friends suddenly disappeared. no one came to visit or called to invite me to eat with them or go places with them as they had when he was alive. i was so lonely and it was not until six months after he died, and i had come back home after a month-long visit with a sister in IL., and walked into a cold, dark house with no one there, that the grief set in.

i would look at his picture and pray that the lord would come get me too. this lasted 18 months, and finally i sold the house and moved where my son and grandkids lived.

grieving is a long process, and a lonely one. six years after he died, i became reacquainted with a high school friend, and now we have been happily married for six years. and.... you guessed it. he has als. he was the healthies man i'd ever known, and then one day he noticed he was very tired, and it went downhill from there.

this time, i am grieving before he dies. i cry a lot, have lost weight, and i come to this forum with friends i have never officially met, and know that i am among friends. friends sent from God, and i am so grateful for them.

don't give up. the lord promises never to forsake us.

Coping with Your Loss

Hello Buf (Greetings from the Windy City -- Chicago):

First, I am deeply sorry for the recent loss of your Father. I am sure he was a very special man who meant a great deal to you and your family.

Second, have you looked into support groups in your area?

Sometimes a local church will offer a weekly support group, and oftentimes, these groups meet for "free." By joining a support group or support system, it can be a wonderful way to receive the emotional support you may be yearning at this time. It will also help to ease the pain when we are grieving the loss of a loved one.

Third, I recommend prayer. When we go through a tough time in our life, it is amazing how powerful this can be for most, if not all, people. It can fill you with peace and comfort. I highly recommend prayer!

Finally, if you are unable to sleep and have lost many hours of sleep, please speak with your family physician. He (or She) may be able to assist you in this area. You may or may not be suffering for depression. Of course, only your Doctor can diagnose the problem, and recommend a solution for your specific situation. I am not making a diagnosis. I am simply recommending that you speak with your Doctor as soon as possible.

Again, I am deeply sorry about your loss (your Dad) and hope the above suggestions will bring peace and comfort to you.
coping with ALS death

I am new to this site and my Mom died on April 6, 2009 of ALS. The disease took everything away from her that she loved to do and at the end it was very sad. A vibrant and wonderful person reduced to a level she hated. Her last day was one where she was subdued and not herself - she just gave up. I guess the CO2 level was gaining and she simply went in her sleep - bittersweet.

I do not know how to cope except that time will make it a duller pain and I keep a notebook to record little things that are memories. I had a recording of my Mom's voicemails made so I could remember her voice. She couldn't speak for several months and I want to hear her on my sad days and not remember her loss of voice. She was a good photographer and I have photos but what is really hard is that I want her back. There is a place in my heart that is simply empty. My link to childhood and good times is gone and that is very hard to deal with. I know she didn't want to go but the ALS got her even though she fought it for 4 years. I think she really went downhill once the diagnosis was made - she knew the result.

I will also write down all of the little tricks we came up with to help her with mobility and eating. I want to get that out to as many people who could benefit from it. Maybe that will help another so they do not have to suffer as much. We need a cure - no one should have to endure this disease.
Lillian's daughter,
I am so sorry you lost your Mom. Your love for her is clear from your post. My heart goes out to you. If it would help to share more about your mother, there are very supportive people on this board who understand.

I for one would appreciate any tricks or tips you are willing to share that you learned as you took this journey with your mother. You have much to offer those of us who are learning as we go.

With my sympathy,
Hi Buf

My Mum died 3 months ago and am still struggling , to the point that I can't talk to those people who mean the most to me ( you included Thelma313 - sorry).

I thought I was doing ok but now have many moments when I still think I can ring Mum for advice. Fortunately my employer offers a great telephone counselling service , so I rang them to make sure I wasn't going mad.

Take a look at the advice offered above and know that you are still in the raw stages.

Hugs and kind regards

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