Knowing the right thing to say...

[CoachMeg]

Yesterday marked another step in this whole process for my husband. He will be working from home from now on. He also notified his boss and team members that he will be retiring soon. He had a really rough, emotional night.

I felt in a bind as I had pushed for him to start working from home and looking at disability retirement. I know in my heart that it is right for him so that he can have more energy for the kids and I. I feel somewhat guilty that he is giving up one more piece of his independence. I cannot imagine the struggle to want to provide for your family, but knowing you can't actively work. As a side note, there were lots of stairs at his building and his leg weakness continues to get worse. Not to mention the 30 minute drive to and from work.

I feel like just another poster who is here whining about how much ALS SUCKS! Well, it does and I am. I am also scared to death. Not knowing what to expect or when. I want to provide him with as much mobility and activity as I can. We have always said "I love you" to each other and the kids, a lot. I just wish that was enough to make it all better.

Sorry for the long, weary post. I have never been much of a writer, but definitely find it cathartic to post here.
Thank you for providing an avenue of communication to discuss and describe what is happening as a caregiver and as a PALS.
Love and light
Meg

 

[Katie C]

Don't apologize for whining hon. You definitly entitled.

 

[Gusflower]

This disease sucks so much Coach Meg.

This forum confirms that a lot of people are suffering and that a cure must be found.

 

[Jason's Dream]

Don't apologize. It really does suck. Feel free to post and vent anytime.

One thing, no one likes to think about, but my husband was worried about us after he is gone and wanting to take care of us, so our pastor suggested pre-planning his funeral with what he wanted, while he could still communicate his wishes. He stated that with this already planned and in place, that it would be easier on me and the kids when the time came, knowing I wouldn't have to make those kinds of decisions at that hard time in our lives. It was hard to do, but it has made my husband feel better, knowing that he has made that part a little easier when the time comes.

Also, ALS for everyone progresses at different rates, but we didn't want to waste time working jobs. My husband's ALS is progressing at a fast pace, and so we quit school, I quit my job, we moved in with my parents, and started traveling. Jason had never seen the ocean, and he wanted to take his son to see Thomas the Train, to the Children's Museum, the Zoo, etc. If your husband can still travel, I'd ask him what he wants to do with his time, where he wants to go.

So we live on his disability. I worry more about what will make his life better, as I know the bills will still be there when he is gone.

He is a reader, and his ALS has progressed to where he has hardly any use out of his hands, so I got an e-reader and sat it on a tripod on his hospital bed so he could still read his books. When he can't do that anymore then I will get audio books and get him new books and read to him.

I also got a mp3 player and loaded up all his music, so that he can sit there and look outside or close his eyes and rest.

He has also typed out letters to our kids and myself, we made videos of him playing with his son, and daughter. As well as videos he talked to our kids.

Get to where you and him have your own language. Because all too soon, I love you won't even sound like I love you anymore.

Get the equipment earlier then later. You don't want him waiting for something he needs. Get the papers in order.. the power of attorney, last and living wills .. while he can still communicate what he wants.

Doing these things seems to have relieved my husband, knowing that I and the kids are taken care of and his wishes will be carried out.

I'm so sorry to hear you are going through this. I wish I could make things easier for you and your family.

~ Becca

 

[halfin]

I worked (from home) until the last possible minute - I only stopped last month, and I'm pretty far along, with hospital bed, wheelchair, assisted transfers, feeding tube, and mostly incomprehensible voice. Also down to one finger typing, very tiring. Now that I've retired, I wish I'd done it sooner, when I was strong enough to do more things. I could have travelled, visited far-flung relatives, seen some sights.

When I was working, it all seemed so important. But now, after a month off, my interests have totally turned elsewhere. I have pretty decent disability, although there's a lot of paperwork. The financial hit will hopefully be tolerable.

If I had it to do over, I'd quit work as soon as I was diagnosed and spend the next year and a half really enjoying life.

 

[brooksea]

Sooner is better to "retire!"

 

[CoachMeg]

Thank you all for the support. Today was a holiday so he was able to enjoy being home, watching all the baseball he wanted, reading and playing with the dog. So, he is more rested and I think more at an even keel. one day, one step at a time.
All of your comments and insight are much appreciated.
Love and light
Meg

 

[Katie C]

Another thing to throw in the mix about "retiring"... We were able to keep Glen working long enough that he was vested in the reitrement program at his company. (The company he'd worked for for 26 years shut down several years ago.) Becaluse he retired, I am classified as a "surviving spouse" and still receive his pension and while I pay for my health insurance, it is through the company so the rates are reduced.

And yes Meg.. it's all about the baby steps.

 

[jmaycavagnol]

Hi----I am caring for my Mom so I don't know how it feels to support & care for your husband through ALS but I can say this....when I was married my ex-husband was laid off not once but twice and for men it is such a blow to the ego to not work and provide for their family. I made it a point to always thank him and express my aprreciation for all of the other things that he did for our family that had nothing to do with working. I had to find other ways to make him feel needed and valuable. (His being laid-off and etc etc had nothing to do with us being divorced--lots of other issues---I know that he felt much better about not working because he truly felt appreciated for the many many other things he did that contributed to our family) I know your husband was not laid off but a "forced" retirement in his mind might be a similar feeling to being laid off.

And then on top of him retiring is the ALS....you are right ALS SUCKS BIG TIME! Remind him that his profession nor his ALS define him.....who he is and his family are the only things that matter.

I know I sound like I am trying to be overly positive but I really believe that people have so much more to offer the world than what we do for a living and this horrible disease and on the hard days if we can focus on those other things then maybe just maybe we can get through all of this pain loving each other and showing our kids and others around us that love and support are the most important things in life.

By the way...have I mentioned that ALS SUCKS!

 

[howerstephanie]

I agree with everybody! ALS DOES SUCK!

I am having a hard time coming to grips with my dad having ALS. He was officially diagnosed Aug. 2010. Some days are better than others. I don't know if anyone feels the same way I do, but while I'm at work, all I can think about is this disease. It's hard to "act" happy at work and laugh at peoples jokes etc. because I may appear "happy" but deep down I'm not. I don't want to come across as sounding callous or that I'm feeling sorry for myself...it's my dad and everyone else who has ALS I feel soooooo sorry for :-( The day we found out he had this disease our lives changed.

My family and I are excited to do the Walk To Defeat ALS in Hershey PA. on June 4th. It will be our first walk. Anyone else doing the same walk in Hershey?

Well, thanks for listening. I'm probably not posting this in the right spot, but I wanted to comment on what CoachMeg and everyone else had to say.

By the way, my dad might need a wheel chair for the 2 mile walk in June. Do you know where we could get one for him? Thank you in advance.

Stephanie

 

[pudge44]

meg as you know you and I are at the same stage in the process, my husband just had the disability papers faxed to his neuro so the neuro can state he is no longer is able to work, now things will happen fast, my whole thing is after how I felt yesterday I have no one to call and talk to, to share with, believe you me I am grateful for this forum and grateful for certain people who have basically saved our lives by keeping a decent roof over our heads but I need desperately human contact, am I the only one? I am willing to share my cell phone number with people who are experienced in bulbar onset als or have PALS who are at the same stage in their illness, caregivers and loved ones feel everything too!.

 

[KC2U2]

I agree with everybody! ALS DOES SUCK!


By the way, my dad might need a wheel chair for the 2 mile walk in June. Do you know where we could get one for him? Thank you in advance.

Stephanie

I used a loaner power chair from the ALS Association for our walk last November, check with your rep they should be able to set something up

 

[Jason's Dream]

I used a loaner power chair from the ALS Association for our walk last November, check with your rep they should be able to set something up

Last year, my husband was using a rollater at the time and 2 miles was too long for him. I was also in my 3rd trimester of a high risk pregnancy. You should be able to call a phone number and ask to reserve a wheel chair. Or call the equipment facility or thier ALSA loan closet. It wasn't a problem and both my husband and myself were pushed the 2 miles.

 

[heymom05]

The best thing I heard our dr say is "you have worked long enough and hard enough for enough years, now retire. Your health is your job!" Kev retired in Dec. And yes, the struggle while waiting for SSDI is painful, we are learning to ask for help when we need it, but we are in this together and that makes it easier.

Yell when you need to vent...we are all here with you!

 

[howerstephanie]

I'm sorry it has taken me awhile to respond back...Thank you KC2U2 and Jason's Dream for giving me answers to where I can find a wheel chair for the ALS walk this year. I appreciate your help!

Stephanie