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Children of patients

bschaeler
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My husband was diagnosed with ALS almost a year ago; he has bulbar als, so his progression has been very rapid. I fear he is at the end of this journey as he is exhibiting signs of getting ready to 'let go'. My question is, should my children be there at the end? I have a 16, 14 and 5 year old daughter and this whole experience has been very hard on all of us. Hospice is involved, and the kids have started counseling. I plan on meeting the counselor for advice, but I was wondering if there is anyone out there that has had this experience and if so, what would be your advice?

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Counseling ALS

3 replies

spinningdr

I also have ALS. My children are grown and married and it took my son over 4 months to come and see me. I was thankful that he did and he was too. I told him that I am still the same person, as of today I have lost only the use of my legs but I "walk" with God and my wife and a group of hundreds supporting me. When I am at the end of this journey I will want all those who love me to be near. They need to know that there are many ways to pass on and none of them are very pretty. How many of us chose our way to die? I used to kid my wife that I would like to die running, playing golf or fooling around. I cannot do the previous two and barely the third but I am close to the lord and I hope that you and your family are too. Those who do not see loved ones pass usually regret it. God Bless you and your family. God Speed. Wayne

bschaeler

Thank you for your comment and courage. My dear husband passed away on July 5th, and per your advice, was surrounded with family. Not only me and our children, but extended family as well. I agree that it was important for the children to be there at the end, and his death was peaceful. We are very close to the Lord, and we take peace in knowing that he is home and well again. I have explained to the children that it is our loss we are mourning, not their Dad, because he is happy now. Thanks to God, and the wonderful support of the counselor's at our hospice, we are all doing well; although we miss him terribly.
Thanks again, your advice was right on. God Bless.

nancy777

I am not sure if you are still in this group or not but I am a child who lost their mother to ALS. We are christians as well and believe that she is in heaven where she will never be sick again, never feel sorrow again or have health issues. Is this any easier being a child without their parent not really, but I trust in God and although I do not understand why, why she had ALS or why she died I will continue to trust Him. My mom was cared for at home by her daughters and it was one of my greatest joys in life. My Dad was there as well and although she could not speak or hardly move you could still see the love in her eyes and the sound she would make when she would smile at him and that is what I believe true love is. That is what I looked for when I got married to my husband the person that would be with me though anything. Your children will see that and although they will have a hard time to remember their Dad before ALS the memories will come back and they will be treasured
Praying that God will give you comfort and strength

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