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hkohlman

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Hi I am sad tonight. My mom just gave me both her and dads FIVE WISHES! My dads wishes are to not be put on any type of breathing machine, including oxygen and he does not want any cpr or feeding tubes. He wants to just be kept confortable until he dies. This scares me because I am not ready to lose him. His ALS seems to be progressing at a pretty quick rate. I am not sure how to deal with these emotions right now so please bear with me posting things that may not alway sound correct. I will try to keep everyone updated on his condition.

Heather:cry:
 

Al

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Hi Heather. What sounds correct? What you feel in your heart is what is correct. You are going through a lot of different emotions right now that you did not think you would have to go through yet. No one can prepare you for what is going to happen. We can offer support and advice but you are the one going through it. Don't feel guilty for your feelings. We all have them and deal with them in different ways. Just try to take it a day at a time and focus on the good things that are still happening. Take care. AL.
 

CindyM

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Good morning Heather. I hope today finds you in a better place emotionally. We all know that this disease affects everyone in the family and my heart goes out to those who try to cope with everything that the disease does to their loved one while trying to sort out their own feelings at the same time. Not an easy job! Regards, Cindy.
 

hkohlman

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thanks Al and Cindy

I am doing a little better today. Thanks for your support. My biggest scare is that I am going to have to tell my two young daughters that Grandpa has this disease and We are not sure how long we will have with him. We just went through a death on my husbands side a year and 3 months ago. My children were very close to Auntie Pug. They watched her die slowly in a hospice home. We were the only family that lived close by so we had to visit all the time. She lived 9 mths longer than expected. To this day they still talk about nana pug . I am afraid to have to put my kids through this type of grief again so soon, they are still very young only 8 and 10 and are Grandpa's little girls. Thanks again for the support sorry for my babbling on's.
I think I am going to go to a flee market today maybe that will take my mind off of this for a while!:p
 

CindyM

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Great idea, Heather. Hope you find some great bargains! As for your children, don't underestimate the strength and resilience they are learning from you. Grief is hard on children but with a great Mom like you, they'll do better. Cindy
 

hboyajian

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Dear Heather, I understand your concern for the emotional impact losing people they love will have on your children. Grief of this kind is with us always, but when shared with our family brings us closer together and stronger in our love of each other. Your children feel your love of them as they also feel the loss. I'm sure their nana greatly appreciated their company (maybe why she lived longer than originally thought). Children are often quite observant, and your girls may already be concerned about their grandpa as his health declines. It is sometimes hard to explain in a way that helps children understand without overwhelming them. My sister and I also struggled with this as our father was clearly getting worse. We decided to tell our children at the same time so the older cousins wouldn't blurt something out that the others would be suddenly shocked by. My 8 year old nephew (as well as the teenagers) was present as his grandfather passed away. He cried hard, but he was with all of us. He picked one of the last songs we sang together. Letting the grief out seemed easier for him than for all the older people there because it was so pure, not muddied with adult regrets and concerns. His happy moments are more wholly happy also because he is so much in the moment.
When my son was 6, we lost a close family friend who was like another grandfather to him. We went to visit the family at the hospital, but he was too young to go into the ICU to see our friend. He had a hard time quite believing that he had died later on and it took several years for him to understand he was never able to see him again. I know it must be hard to see any positives in your fathers choices when you so much want to keep him with you. But with this choice, he will likely be at home, not in a hospital setting and the children will be able to be more naturally a part of his passing when the time comes if you should choose this. Until then, I hope you can have some good times with him that you and your children can keep in your hearts.
 

hkohlman

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Thanks, for the input. Me and my sister are planning on doing the same. Unfortunalty my brother is being a butthead and needs to grow up He decided last may to disown me, and my mom and dad. So he does not even know dad is dying. My dads wishes are for him to be out of the family right now which was his choice not ours i decided. So until then we will tell a 10yr, 8yr, 4yr, 3yr, and 1yr old that Grandpa is not doing well. This will be when my children the two older ones start asking questions. Until then we will live day by day. Take care, Heather
 

hkohlman

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Thanks AL

Thanks for the information. I will be checking it out shortly.

Heather
 

hboyajian

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That website was very helpful in understanding my teenage son's reactions. His teenage moodiness was exacerbated during his grandfather's illness. He swung between sadness that grandpa couldn't easily play chess with him anymore, anger that was not very understandable over little things, and escape reading the same books over and over. After a while, he found that it was easier for grandpa to do other things with him, and took slow walks with him, helping out with his walker pillow. Later, at the hospital my son was wonderful playing with his younger cousin and helping carry bags of food and heaps of coats and other belongings around. I think he felt more secure having simple, clear things he could do. even though he couldn't change the ALS.
 

Teej

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Our children have all dealt with it differently. As I have said before, we have four daughters. My youngest has always been daddy's little girl, and they gardened together, played games together (my husband has invented several games, but PDQ is his game that's published and he has won several awards for it!). I remember the first time I realized the pain my then 10 year old was in... She sat at our back window right about the time the garden should be planted and just stared out at the empty dirt ..... In that moment, I realized how much she had lost. Every day when he got home from work, they would plan their next project, their next planting session, or which game they would play. Now, at night she crawls into his hospital bed. He is unable to hug her, he just pats her head, but she lays with her head on his shoulder and tries to make him laugh. It touches me deeply. God gives children a special measure of grace, I suppose. My oldest has written a song for him that she is having published, chronicling all he has meant to her and what he is going through now...she is performing it at school (she is a vocal performance major), and dedicating the last portion of her recital to ALS research. We all search for the best way to handle things, but day by day is truly the best. Cherish the moments, and find joy in the opportunities to express love. Fight for your life every day, and cherish it for the gift it is....My husband also videotaped a blessing for each of our girls, and now that speech is becoming difficult, I am so grateful for that. He wanted them to always be able to hear his voice telling them how proud he was of them, and what he believed was possible for them. It's an incredible gift that they will always have... Anyway, I don't mean to ramble. Thank you for letting me share... Much love and many prayers to everyone who is facing this head on every day, Teej
 

hkohlman

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thanks teej

Thanks for sharing teej. I don't mind the rambleing at all ! Have a good day.

Heather

ps we picked up my dads special walker yesterday. Now he can get out and about more!:-D
 

CindyM

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Good news about the wlaker, Heather. Let us know how it wroks out! Cindy
 
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