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Active member
Aug 20, 2006
Friend was DX
Hello. My friend and her husband found out about his diagnosis (bulbar onset ALS) last August. Six months later, my dear friend is not doing very well as far as coping with this tragedy. She takes care of her husband very well - tending to his needs. But she is still so devastated. Uncontrollable sobs mixed in with day to day living. How long can a person take such heavy grief ? They have sought out grief counseling, but the ALS association contact still hasn't gotten back to them. (not sure what's up with that).

I don't even know why I'm posting this here except to vent - it is so very hard to watch. I think he (the patient) is doing better than she is. He has even told me he doesn't know how to help her with her grief (and she has told me, that she has heard that the worst thing a person can do is to expect the one who is suffering to ease the caregiver's pain.) I don't know that that is true. Ideal, maybe, but we live in an imperfect world and aren't these experiences so that everyone in them can learn?
Hi Pearl,

Some people need time and your friend obviously is one of those people who needs just that. Some people take years to get over grief and adjust to a new situation... others... only weeks.

Having said that, she needs counselling to help her with her feelings of devastation. There are many grief counselling clinics around and a few phone calls might just find such a place. Alternatively, a psychologist specialising in this area could also help. If the ALS Clinic is not forthcoming then seek alternatives.

Hope your friend finds what she needs soon.

Hi Pearl. Have I given you the link before? It is a Georgia based group run by a gentleman who has ALS and his family. There may be something on there that you could use to get your friend some help.
Hi Pearl,

You're a great friend! Personally, I think that her expression of grief is far better than holding it in. There's a kind of grief called anticipatory grief, which is often experienced when loss is inevitable and relatively imminent. I think it is normal and it enables a person to gradually be able to deal with the death of a loved one. I hope she is able to find some help, counseling, to guide her through that pain. She is lucky to have such a devoted and caring friend. Sharon
Thank you all. Some days are better than others for her. I've heard that some family and ALS patients grieve in reverse (that the worst comes in the beginning) - don't know if that is true, or wishful thinking. I suppose it is diferent for everybody.
pearl - this is uncanny - it's my story

when i read your post about your friend's grief over her husband's onset of bulbar symptoms, my heart just went out to you and them. you, for caring and wanting to help, him for having this horrible disease knowing his days are numbered, and hers for her early grief, and inability to control it.

i am my husband's caregiver also. he has limbset symptoms, not bulbar. and i take good care of his daily needs also, trying to always smile and be as cheerful as possible; but like your friend, i break down on a daily basis almost. ever since he was officially diagnosed two months ago, i started crying every time i thought of losing him. then, last week i read in this forum that 90% of all als patients die in their sleep - that they 'just stop breathing'.

that pretty much did it for me. i wrote Al and asked if this was true, and he wrote back saying unfortunately it was true. ever since then, i wake up from awful, disturbing dreams every night and reach over to touch him to make sure he's breathing.

also, i can cry at the drop of a hat for no reason at all. it reminds me of many years ago being young and dealing with pms. i'm not being facitious (sp) here, but it's true. my hands shake, i choke up when i try and talk, and it is my husband that tries to help me feel better. i know that 's not the way it is supposed to be, but that's the way it is at my house.

i sit in church, and when we are included in the opening and closing prayers, i just start crying and can hardly stop.

please know your friend is not alone in this. everyone reading this can relate in some way. this forum is therapy for me. and others too i am sure.
Jackie. I am so sorry that you are having bad dreams and are disturbed by what I have told you. I try to be compassionate when I talk to people about ALS but there is no real way to sugar coat the facts and statistics. They are cold and hard as is this disease. It was, and is never my intention to upset anyone on this forum and I am sorry if that has happened. I am sure that I have told you as well that your husband may be in the group that is outside the normal or usual group. You are a lady of faith and you have to keep the faith and not dwell on the bad. There is some good in all things. I am not sure where it is in this situation but people of faith believe in it.
Jackie - I know what you mean about bad dreams. I have them myself when I think about the realities of what this disease can mean. I don't know much about the subconsious but I bet this is our mind's way of trying to come to terms with the facts.

Al- you're good about giving the truth. People need it, that's why we ask. If you give more information than we can handle we will find a way to ignore the answer. :-D
saska said:
Hi Pearl,
... There's a kind of grief called anticipatory grief, which is often experienced when loss is inevitable and relatively imminent. I think it is normal and it enables a person to gradually be able to deal with the death of a loved one. ... Sharon

No kidding. It's like a grief marathon. Years of knowing what is to come and seeing it slowly arriving. It's exhausting.
I think that the role of the caregiver is twofold. The caregiving is from necessity focused quite often on physical needs, and the person with ALS is increasingly dependent for basic survival. The emotional caregiving, though, is not a one way street. This is an area where the person with ALS can often take care just as much of his or her family as they do of him or her.
My dad wanted us to be honest with him about our feelings, and he wanted to be there for us to help us sort them through. There were times that I did hide from him the depth of my grief, thinking foolishly that I should put on a happy face to keep him upbeat. I found that this just separated us emotionally at a time when we needed to be closer together. When he told me, "I want to know what you are thinking, and tell me the truth" I broke through that and let him know my deep sadness that he would die and I would miss him terribly. I hold in my heart the time we shared crying and holding each other. Later we did some happier things together, and were able to laugh together too. I think the laughter was happier and more genuine because we shared the grief before it.
hboyajian -

As a person with ALS, I couldn't agree more about the ways that you say caregiving is a two way street. I wouldn't have it any other way. If I were to be cut out of the emotional give and take that is part of being a wife and mom, then I would be devastated. It stinks that nobody can stop this disease from eventually taking my life, but there is no reason to let it take my relationships. I feel you are an example of a strong and healthy caregiver and hope you will keep posting.

Thanks for all your contributions,

Hello everyone!
It is always so lovely to read your caring messages and to see how we are taking care of each other without even know who we are, where we are and what we look like!
I was my husband care giver and I know and understand deeply the different feelings you all have. Daniel died while he was asleep, and most of my friends and family were surprise about how shocked and devastated I was. Yes, you know you loved one is going to die if they have ALS but you are never ready for it - NEVER. I can only tell you this, as long as your loved one is alive do not let the grieve take over. Enjoy the time you have, control your mind to stay in the moment. A doctor told Daniel once that there is no hope for ALS - that made me so mad! THERE IS ALWAYS HOPE. There is hope for one more day with a loved one, hope for a day without falls, hope for many more smiles and kisses ......... Nobody knows when they will die, not even the best ALS doctor in the world can tell you that.
My husband has als and I take care of him. He helps me every day with my feelings of grief. It is okay for the one who is ill to help the one who is the caregiver if it is a loved one. My husband and I know that the with this disease we are both always feeling the lossess. When my husband can no longer hug me, I felt so much pain also because he could not hug and I could not recieve a hug like we used to do. We do hug each other though just in a different way now, we hug with our hearts. It is so important for people to remember that this disease effects the family and friends. Everyone is suffering and we have been able to help each other. One day I may have a hard time and my husband will help me with my grief and then I at the same time will be helping him with his grief and his difficulties. I truly believe that when you love someone you share the grief, the pain and the joy in life together. We have found a balance where when one is up the other helps the one who is not.

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