Travel Plans

[EGBAR]

Well this Thursday I am off to Ohio to tell my parents of my recent diagnosis of ALS. It has been a very hard decision to even tell them. They are 78 years old, and the last thing I want to do is make them worry and fret over me when there is nothing they can do. I live 800 miles away and that will make them worry even more, even though my wife takes very good care of me. I have debated not telling them hoping that this will be slow progressing, but I feel like I am lying to them. Has anyone else on here dealt with this issue of whether to tell them or not? If I decide not to tell them I will just go up and have a nice weekend with them and my brothers and sisters. Your thoughts?

 

[asantiago]

We were in that boat with my mom and her father. He was in the hospital with heart problems he was 87 at the time. Our instinct was to not tell him. But after we thought about it decided that was not fair to him. He was after all her father and really deserved to know. I think all parents deserve to know and not be kept in the dark. I know if it were my child I would absolutely want to know.

You will want them for support and there will most likely come a point in the next couple years where you will be forced to tell them. ALS is not something you can hide for very long. I think its important to tell them while you are in the early stages and let them make some decisions like possibly spending more time with you.

Sadly, my grandfather is still alive at 89 but my mom is no longer with us.

 

[maryhahnward]

My husband's mom is 82 years old and lives in CT and we are in NC. He has not told her and I do not believe he will. I have shared with him that as a mom I would want to know but it is his decision and I respect it. He feels that for now the disease is a slow progression, and this was confirmed again by the neuro, and he will very likely outlive her so there is no reason to add any burdens in her life. We all know our parents and family best so you have to do what you think is best for all of you.

 

[AKjo]

Gary is choosing to not tell his 93 year old dad about his diagnosis. It took him 7 months to tell his three brothers, and has told just a few other people. Our plan is to travel to California over Thanksgiving as all his brothers and dad will be together at that time. He has one AFO now, and I'm not sure what his ambulatory status will in November, so what then? He did break his back 5 years ago, so can always blame his new problems on that - which everybody finds easy to accept as an explanation. His dad has had prostate cancer for years, and can't see very well due to macular degeneration, but his mind is pretty sharp, and they talk on the phone every day. EGBAR, as your parents are much younger it will be harder to make the call. Good luck with your decision.

 

[caldona]

My mother was in the nursing home and I didn't want to tell her well guess what someone else in the family told her. She wanted to know if the doctor's couldn't do something. Thankfully she didn't live to see me getting to the stage were I am now. But if it was my child I would be very upset with my child and their spouse.

 

[ScarlettK]

Egbar,

This may sound strange, but I have thought about it a lot since my sister's diagnosis in May 2011.

She has been given a specific time table that most of us do not have. She now can make right situations that she may have waited to resolve. In some ways it is a gift. There are thoughts that I know she wants to share with certain family members. She will not leave unsaid these thoughts. This also allows her family and friends to let her know thoughts and feelings. So much can be resolved and planned NOW. There is no procrastination.
Time is fleeting.

So my thoughts are the same for you in your situation. I know how hurtful this diagnosis is for everyone especially our loved ones. I live it daily with everyone here, but I am so thrilled to be more open and honest about my feelings for my sister. I share them now while I can.

May God continue to bless you Edgar.

Kaye

 

[LizT]

That is a really tough one. This really isnt something you'd want your parents to hear from someone else- is it a possibility that someone else would tell them? If so, I think they ought to hear it from you.