ALS diagnosis

[jimh1953]

I have not lost my wife but it is eminent.April 30 will be our 46th anniversary. Yesterday we got the news that she has ALS. I may not be posting in the appropriate forum but I'm sure those of you here can relate.

[KayC]

I am so sorry.  I've been taking care of my sister with dementia...it's hard not to look at the future, but I can't handle it, I have to take one day at a time, something I learned when my husband died 16 1/2 years ago.  My heart goes out to you both.

I had a friend from my church that died of ALS.  His family was not there for him.  Our small church stepped in, taking care of him and providing meals, laundry, everything!  

You are in my thoughts and prayers as you make your way through this.  I hope you'll contact social services and get some help when needed.  Please come here any time, cry/vent!  We're here to listen and care.

[foreverhis]

I'm so sorry that you find yourself here with us.  Yes, you are more than welcome to post here. 

What you are likely beginning to experience now is called pre-grief.  That's when you and your love know the time will draw near and there's nothing you can do to stop it--though you would give anything, do anything, pay anything to change it.

I had never heard of pre-grief, also called anticipatory grief, until my wonderful sister-in-law told me about it.  She had been through dementia with parents and now leads a support group for caregivers and partners.  Suddenly, I could make better sense of everything that I was feeling, thinking, and doing.  I would literally beg and plead, out loud and often, for my husband to recover from his aggressive cancer.  I'd offer myself up in "trade."  And on and on, even though I knew it was foolish.

You didn't ask for advice and normally I "keep my trap shut" in that regard, but I'm going to give you a little anyway.  There will be times that you are angry and sometimes that anger may spill over onto your wife.  You won't mean for it to and you know it's not her fault; it's just human nature.  The same will likely be true of her.  And then, because you clearly have the kind of cell-deep love my husband and I did, you will forgive each other instantly.  There will be times when you are so exhausted from caregiving that you have to take a break and you may feel guilty about that.  Please try not to.  You need to have the strength and resilience to be there when she needs you.  I'm a terrible example of not following that advice and there were times I simply collapsed.  Have a notebook or binder to keep track of doctors/hospital/lab appointments, what was said, what advice was given, what's next.  And make a list of questions you and your wife have in advance of appointments so you are less likely to "miss" something important.  And finally, just love each other; take the good times whenever they come, laugh, find joy now, embrace each other.  We here know how fragile and precious life can be.  We also know how deep love can be and what it "costs" when we lose it.

Please come here any time to talk, rant, question, read, and even "scream" if you need it.  We'll try our best to help you through this difficult time and beyond.

Here are a couple of articles you might find helpful:

Understanding pre-grief

Preparing for the loss of our loved one

 

[Gail 8588]

Jimh1953, 

I am so sorry you and your wife are dealing with ALS.  I have a close friend who lost her husband to ALS. 

Please feel free to come here to vent as you feel the need. You are welcome to be here.

Gail