First Family Gathering since Diagnoses

[tawill]

I did not think I was concerned about getting together with all my siblings until this last day or so. This will be the first time I have seen most of them in person since my diagnosed in late September. I sent emails and websites for them to learn about if they were interested. I have six brothers and a sister and many have children with children. I just happen to be the "matriarch" since my Mother died 16 yrs ago. I am the second oldest with all in 9 yrs. My onset is Bulbar, and my speech seems to be deteriorating faster than I expected. Of course it is worse when I am tired. Any one else have these apprehensive feelings in the begining? Don't want to miss the gathering, but don't want to be talking about me the whole time. Let alone repeating myself constantly. :-?

 

[gooseberry]

I think you did a great thing sending out an email so everyone good learn if they choose to take the time. Our experience has been that some will have difficulty talking with you at all just because they are uncomfortable knowing you are sick. Others may never leave your side. The reactions and engagement of family seems to be varied. Most seem to ask how you are doing but few want details. If you have a particular sibling you are close to, it might be good to talk to them and they can answer the questions of the rest of the family.

I wish you a happy and joyous family gathering. We have been taking pictures of ours especially when the kids are there. They are treasures. Steph

 

[affected]

No doubt this will be difficult. But I think the first time is the hardest and probably your siblings are feeling some anxiety about it all too.

You will find a range of reactions to being with you, try to brace yourself for that. Some people find it very difficult to cope with bulbar onset in particular. Some find their way through that over a few visits, so try to be patient and let them find their own way.

I know what you mean that you don't want it all to be about you, yet you do realise it won't be that simple either.

I hope you find that amongst all the concerns and the hard parts of the day that you have a wonderful time wrapped in family.

Please let us know how it goes and know we will celebrate with you and understand that bad bits with you xx

 

[Janie H]

I am looking at the same thing on Christmas, can't speak at all, my mom is still around so I am the second oldest in my family, the kids just don't understand.

Janie

 

[gooseberry]

Can you win them over with technology Janie? Can you still text? Kids love the technology.

 

[mpnatx]

I think you did a great thing sending out an email so everyone good learn if they choose to take the time. Our experience has been that some will have difficulty talking with you at all just because they are uncomfortable knowing you are sick. Others may never leave your side. The reactions and engagement of family seems to be varied. Most seem to ask how you are doing but few want details. If you have a particular sibling you are close to, it might be good to talk to them and they can answer the questions of the rest of the family.

I wish you a happy and joyous family gathering. We have been taking pictures of ours especially when the kids are there. They are treasures. Steph

How true! I've been experiencing uncomfortable friends and acquaintances since learning of my diagnosis.

And, my kids who call me everyday to ask me how I am.
It is varied and takes time for others to accept or learn about ALS, if they choose
Happy holidays to all!

Marty

 

[Janie H]

I have a IPAD, will see if I can get a funny voice. The robot voice does nothing.

Janie

 

[DreamsEnd]

My PALS loves to talk about himself! �� But he also always asks others about themselves. Many of our friends - we're older - have medical issues themselves or others just interesting activities so turning the focus to them is good.
It's interesting because he comes from a family where it was considered rude or prying to ask personal questions but I'm from the opposite, I ask if it appears to be well received and if not I drop it.
ALS is something that happens to you, not who you are and we find most people are interested and learning if my PALS is open about it. Some just don't know how to approach it.

Sherry

 

[Graybeard]

I've found wifey, both sons and the daughter-in-law have all done better in the last year since I was diagnosed. I congratulated each of them in turn at dinner last night, but was cut short by my tears.

They're still stepping into the void I'm leaving as Mr. Fixit and paperwork processor.

 

[lgelb]

Janie, re making it more fun for the kids: I know for apps like VoiceDream, there are like 150 voices available, but since I don't know what app(s) you use for speech, at the least you can go into Settings/General/Language and Region and change the language to something more fun like Australian English.

 

[Janie H]

Christmas went well, I couldn't eat with everybody else, but I held babies and got hugs from everyone, we do gag gifts and I drooled when I went to pick my gift, everybody was sweet and I got tickets to Nascar Hall of Fame, got home and straight to the shower.
I'm going to check out Voicedream.
Janie

 

[cheerleader]

Graybeard, re: your comment about your family stepping up to fill the "mr. fixit" void- Know that was one of the most difficult things for my husband- feeling like he wasn't useful and fulfilling his"manly role". Ironically, as our family gathered this past week and relived happier memories when Joe was here with us, both daughters and son in law commented about how glad they were that they could do for their dad what he had always done! Operating the leaf blower, pouring those 40 pound bags of salt in the water softener, changing the light bulbs, etc. there was great pride in stepping up to fill that void- and a gift they felt like they could give their dad. Sure your family is feeling the same way- so you can sit back and be proud that your family loves you that much! Enjoy the love. Hugs. Donna

 

[Janie H]

Donna you were lucky to have Joe in your life, I was never able to find any man that I could count on.

Janie

 

[cheerleader]

Janie, it sounds like you still have much love in your life! You've raised a caring son who is there for you. That is success!

 

[tawill]

Well.......It came and went. Just as Tillie predicted, most just sort of gave me that first hello hug and then avoided conversation with me. Ok though since I don't converse very clearly anyway. My two closest siblings did spend time with me, but I knew they would since we have talked often since DX. Even one of the younger generation (20's)really wanted to know what was happening. Lots of fun just watching and loving the 40 plus family members present. Not even as big of a deal as I thought. Now for the New year and living with this MND.