Hi, I'm new...

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letty

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Joined
Jun 27, 2008
Messages
13
Reason
CALS
Diagnosis
06/2008
Country
US
State
Pa.
City
Philadelphia
And I'm so grateful to have found this site!

My husband has been diagnosed with the bulbar form after having progressive symptoms for 9 months. I must say I'm in total grief and sadness about this but am trying to remain strong. We have 3 kids in their mid-late 20's, one is married and lives locally, the other 2 are 2 hrs. and 3 hrs. away and are single. Would it be reasonable for me to expect help from our adult kids at a later date? Or would this be unreasonable? Thanks, Letty:twisted::mrgreen:
 

msde302

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Joined
Jan 5, 2008
Messages
77
Reason
CALS
Country
US
State
MN
City
St. Paul
I'm sorry to hear about your husband, though I'm glad you found us here.

I lived in California when my mom started having symptoms. I moved back home to Minnesota to care for her when I was 32. I'm a teacher, so I've got a bit of a "portable" job which made it easier. I was a bit older than your children, but don't underestimate the love a child has for a parent.:-D

It's not what you imagine doing at our age, caring for a parent who is living with a terminal disease. And I know that I fell short as a caregiver from time to time (we could get on each others' nerves, I got frustrated, etc.). But I am sooo blessed to have had those two years with my mom. She passed away last Tuesday. I think as your husband progresses, I think the best thing for you to tell your children is that even though the process is painful, they won't regret a moment, a sacrifice, a long drive, a job deferred. And to be forgiving if it doesn't work out the way you had hoped, knowing that it breaks our hearts to see our strong parents get weak.

Kaija
 

fiddleplayer51

Distinguished member
Joined
Mar 24, 2008
Messages
337
Diagnosis
03/2008
Country
US
State
VA
City
Harrisonburg
Hello Letty and welcome. It's great you found this site but sad that you have to join us. I think it's perfectly reasonable to expect help from your adult kids. They are going to need a way to deal with grief. There is so much about this disease that we can't do anything about, but we can do something about making sure our PALS' needs are met, that they don't feel isolated and alone, that they feel valued and appreciated. Having your kids participate in the caregiver role will help them deal with their grief by providing them with this most critical aspect where they have some control over what's going on. They need to be included both for their sense of well-being now as well as years down the road when they think back to their father's illness. They're going to need to have the feeling that they were there for their dad and they were able to give comfort and care.
Your situation and mine are similar in that my husband was just diagnosed in March with bulbar-onset ALS, we have three grown children who live on their own (ours are 30, 28, 26 all girls).
I hope you'll post whenever you need to. Say whatever is on your mind. You'll find that people really understand you here. That initial grief and sadness at first diagnosis is unbelievably painful. It's such a shock and leaves you feeling weak and unable to move forward or take action.
Soon you will be able to come to terms with it somewhat and gather strength. The grief and sadness come and go, but you learn that you can go on.
I'm so sorry this is happening to your PALS and your family. I will keep you all in my thoughts.
Be strong and take courage.
Jane
 

CindyM

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3,543
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New England
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Hello Letty. I also want to welcome you! As it seems more and more likely that I will be joining the ranks of our PALS, I have often wondered about your question. I certainly do not want to be a burden on anybody but I think Jane has the right idea. Our adult children need a chance to come to terms with this disease. Maybe they should not have to put their lives on hold but they should be encouraged to be involved.

I say this from this perspective: my Mom is in the final stages of Alzheimer's and I help her caregivers whenever I can. It gives us a chance to bond, something that my sisters have not had as they declined the opportunity.
 

letty

Member
Joined
Jun 27, 2008
Messages
13
Reason
CALS
Diagnosis
06/2008
Country
US
State
Pa.
City
Philadelphia
Thanks!

Thank you so much for your posts; your kindnesses have brought me relief. One of my sons (the one 2 hrs. away) will try to come back to stay a couple of days a week and work from here. God Bless you all. Letty:)
 

fiddleplayer51

Distinguished member
Joined
Mar 24, 2008
Messages
337
Diagnosis
03/2008
Country
US
State
VA
City
Harrisonburg
Blessings to you too, Letty,
Your children will never regret the time they spent helping in the care of their father. It's great your son will try be there and that he can work from there.
All the best to your family. Again, welcome and keep us posted.
Jane
 

fiddleplayer51

Distinguished member
Joined
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Messages
337
Diagnosis
03/2008
Country
US
State
VA
City
Harrisonburg
Cindy, I just want to say that it's good that you're maybe finally arriving at a diagnosis, but I'm unbelivably sorry that this is happening to you, that you may be joining the ranks of the PALS. I hope that you finally have your BiPAP and are finding that it helps you to feel better.
Your sisters are missing out on a golden opportunity that you alone will reap the harvest of in caring for your mom. She's so lucky to have you. I wish you both well.
Peace to you and your family,
Jane
 

CindyM

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Joined
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Thank you Jane. You are right about my sisters. At first I was resentful and would not even give them information about how she is doing. I felt like, if they wanted to know, they should go see her. Plus she has been deteriorating for so long now, since before I joined this forum.

They have so many reasons why they cannot go see her, but anyone who hangs out around here knows that sometimes life can get really difficult but you do not abandon your loved ones.

I've gotten over that attitude now, though. I cannot figure out why they do not see this as an opportunity, but so be it. I only know that caring for her has enriched my life. And you are right- I probably will not realize all the ways until years from now.

As for my own health- or lack thereof- :-D we must keep an open mind. It could turn out to be something treatable, like MS or MG. Of course I had a spinal tap last year that ruled out those things but maybe...

Anyway I appreciate you good wishes. Lee, my DH, read the last report from the pulmonary doctor and asked what should we do. We are not a religious family, but I told him the only thing I could think of. I said, "If you want to pray, now would be a good time."

I have a personal philosophy. I call it "If not now, when?" It is too long to describe in a post so I'll make a new thread...
 

anneinma

Active member
Joined
Aug 6, 2007
Messages
66
Reason
PALS
Country
US
State
MA
City
barnstable
I am sorry for you and your husband.

I think it is very important that your kids at least visit. My husband was the oldest of 8 kids and all of his siblings (who are scattered) made an efffort to visit with him. Some who lived closer tried to help based on their challenging schedules.

Our own daughter (17) enjoyed sitting with her Dad and talking about her days, his life experience. When people are sick they usually become much more intropsective which my husband did. Sadly, my husband passed away less than a year after his diagnosis when our daughter was in Europe with her school trip. She is having a hard time about "not saying goodby". Encourage your kids to share some time with their Dad. It may not be "convenient" but they will cherish that time forever.
 

letty

Member
Joined
Jun 27, 2008
Messages
13
Reason
CALS
Diagnosis
06/2008
Country
US
State
Pa.
City
Philadelphia
Thanks and my thoughts

Thanks again Anneinma and everyone else for your kinf words. I was thinking that in other countries, it would be taken for granted that family would be nearby and of course they would gather around to help family members in crisis. here, everyone is scattered and is expected to be independent.

Jane, are you a violinist? I'm a cellist. Love to you all, Letty:)
 

fiddleplayer51

Distinguished member
Joined
Mar 24, 2008
Messages
337
Diagnosis
03/2008
Country
US
State
VA
City
Harrisonburg
You're right, Letty. People in this country are scattered and independence is valued, although I think that trend is becoming more and more so in other countries as well. And we live in a particularly large country, so when we're scattered, the distances between us can be much greater than in other countries. I guess you and I are lucky in that our children didn't move so far away from us.
Yes, I play the fiddle (started with classical very briefly so I used to call it a violin, but I don't read music well and much prefer playing traditional music by ear with friends in jams and sessions.) It cheers up my PALS and he often asks me to play. It makes us both feel better.
I hope your PALS enjoys it as well. The cello is so beautiful.
Peace and all good wishes,
Jane
 
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