To work or not to work...that is the question?

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catcaniac

Distinguished member
Joined
Dec 11, 2010
Messages
189
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
North Carolina
City
Sneads Ferry
Although I am waiting to make a decision until we complete our evaluation at the ALS clinic, I am beginning to wonder if staying home with my husband is the best option right now. I obviously only have a certain amount of leave days but can have leave also donated by others to me. I guess my question is for other spouses on how they handled staying home but keeping their job and insurance going. We are so new to all of this.
 
Hi, I work full time and so does my partner. We work at the same place so I provide some support at lunch times. If he was to medically retire I would still want to work, work time is important to me. I'm in the uk so can't comment on the insurance. Good luck, Dani
 
I continued to work full time during my husband's illness. He went on short term disability/sick leave for 6 months (as allowed by our employer) then was switched to LTD (and SSDI) in January 2010. I was worried about everything financial. He carried his insurance separately and I carried myself and the kids - I never really found out if the kids and I would go on Medicare with him if I were to quit.

Saying that handling everything was difficult is an understatement (in retrospect). Most of the problems stemmed from the home health care(less) aides. In the 16 months we used them, there were at least 30 occurrences where they didn't show, someone called off and the agency couldn't find coverage, blah blah blah. Oftentimes, I didn't know until I arrived at work. Then I got to turn right around and go home.

To do over again, I would still have decided to work. My kids are only 12 and 8, insurance and financial stability are important. If it were just "me", I don't think I would have been as concerned with finances.

Another part of what made it so difficult was to be around some of the people at work; one woman was so "upset and stressed" that her cleaning people weren't coming on the "right" day that week. Are you kidding me? I don't think she would understand stress until it shot her right between the eyes. To sit there and listen to stories about vacations and happy times when we were going through the crisis of a lifetime - well, I spent many hours in the bathroom, my car, the stairwell... crying. It was hard.

I guess the thought of being a fulltime, 24/7 caregiver was too much for me. Work, although stressful in itself, was my escape for a few hours a day.

My advice.... if you are going to continue to work, make sure your hired help are good. If they aren't, it's week after week of heartache.
 
https://www.alsforums.com/forum/als-caregiver-support/13692-working-home.html

Here is a thread that I started some time ago... I am still working in a public school although things are gradually deteriorating. I resolved I am going to take the issues as they develop and I am not worried about it anymore. I will eventually quit working if I feel that's what I should do so because it's just my husband and myself so I don't have the added responsibility of taking care of a child. My husband does not have ALS so this could end up being years on a vent.... and possibly on welfare if I can't find work from home that provides health insurance... which is OK with me. I have made sure we have no debts and live on an absolute minimum. I hope you can find peace in the midst of this!
 
I had the unbelievable good fortune of both having a job that allowed me to work from home and an employer that was willing to bend over backwards to support me in any way necessary. It's a double edged sword though. Officially, my wife had a full time caregiver, i.e. me, so we didn't qualify for any in home care at all through either my insurance or through Medicare. I had to work too, because all of our health insurance was through my employer. We turned Medicare down for the simple reason that I didn't want to fight the battles about who would pay for what. My insurance was pretty much equivalent to Medicare anyway so it was a simple decision to make.

Medicare DOESN'T cover the spouse or children of a disabled person. I have four kids also, so I had the indescribable joy of being Mom, Dad, Caregiver, Employee and chief cook and bottlewasher for our household until the day I hired a private home health aid/nurse. Even Hospice wouldn't provide more than a couple of hours a week of care. Also, due to me being classified as a full time caregiver. If I had it to do all over again? I would have preferred to have a full time caregiver, but no insurance pays for that. So I guess I would have done the same thing but I would have insisted on more help from Hospice. They may call it no-cost, but my insurance paid $550/wk for essentially no services beyond medications. I paid almost the same out of pocket for my private nurse, but she provided way more service to both my family and especially Liz, who absolutely loved her. I know the whole experience left me a mere shell of human. People tell me now that I walked around that whole last year with sunken eyes and looked half dead myself. I don't doubt it one bit. A promise is a promise though, I couldn't have lived with myself if I had done any less.

Dick
 
Bless you Dick! You are shining example of one who has honored their marriage vows. No one said it was going to be easy but I have nothing but respect for you and all the other CALS who have done the same!

God Bless all of you!
 
My son, who is 18 years old and a senior, Facebooked me last night after I went to bed. It was the sweetest thing. Although Eric is his step-dad, he said that he had been thinking about graduating early in January and staying home next semester to be Eric's caregiver. It really surprised me. He said, that way I could work the rest of the semester and he could look into starting community college. I don't really thinks he understands what he is offering but his heart is in the right place. We have a wonderful family to be thankful for.
 
darylwlenka- I am confused by your statement. You said your husband doesnt have ALS so this could be years on a vent...
Once on a vent, PALS can live indefinately so I am just wondering what you mean.
 
Liz,

my husband has a very rare genetic immune deficiency (40 published cases in the world), this resulted in frequent infections that he had a very hard time fighting off which started when he was 2.5 years old. As a result of a bad pneumonia parts of his lungs were cut off in order to save his life. He was on so many steroids that his spine became disfigured and has osteoporosis as a result. Because of all these medications he has been on all his life he has a very hard time digesting anything and we have been through it all... MTC oil, supplements, shakes, diets, probiotics, glutamine.. you name it we have done it with no result. Now he is down to 80 lbs at 5'7". Because of all the pulmonary infections he developed COPD, asthma, and bronchiectasis. His lungs are getting weaker and weaker, now he is at 4 lpm continuous flow. He has other serious diagnoses as well and I am not going to bore you with the list. Last time he saw his doctor he did say that should there be another emergency it may mean the vent and a long term situation... There is really no support forum for people like my husband so I am here because his needs resemble the needs of a person with ALS, he is also on a CPAP, has reduced mobility, etc. so that's why I am here. There is a COPD forum but the people there generally don't tend to have the issues we are dealing with and it's not as active as this forum. Also, here I find people try to resolve way more issues about grief, relationships, etc. than on the other forums. Not to get off topic here...LOL
 
Darylwlenka- Im sorry if you took my post as me questioning why you were here. I didnt mean it like that one bit.
What you have explained sounds truely horrible and i am so sorry that you and your husband are going through this!
I was confused by your statement because to me it sounded like you were saying that there is still a short life expectancy for a PALS after they get on a vent, and your husbands would be long term. Thats where I got confused because a vent isnt a short term thing with PALS either (usually).
Im glad you are here and again, im sorry if you felt like i was questioning why you are here.
 
Liz,
not to worry. I did not understand it like that at all. I was just trying to explain myself. If I say he has COPD nobody will understand the real scope of his issues that's why the lengthy post. Sorry for how I made you feel. Sometimes it's hard with posting on a forum, you never know how people take it, it all depends on their situation, experience with disease etc. etc. etc. Don't you worry one bit and thanks for answering!
 
Ok then friend. No worries.
 
LizT,

When you say that PALS with a vent can live indefinitely, could you explain a bit what that looks like. I mean what condition would the person be in? Would everything else continue to degrade? I am thinking the person would have a feeding tube and just basically be able to lay and stare. Would just like more information as my PALS is progressing so quickly.
 
Catcaniac- sure i can tell you about my experience.
My PALS was diagnosed 8 years ago. He was given the usual 2-5 year prognosis. And if he hadnt gone on the vent, he wouldve passed during that time. I met him 3 years ago, and he was already locked in. This meaning that speech and movement were gone. He still can move his eyes (this is how he communicates), make some facial expressions, and smile. Everything else is gone.
Going on a vent will not stop or slow the progression. Your hubby could end up like my PALS, or he could have years of being on a vent and still have the ability to move a bit. It all depends on his rate of progression.
Its a very personal decision that the PALS needs to make. Some would think that they dont want to live like that. My PALS is glad he made the decision and he has been without movement for 5 years. Of course he has his moments where he is tired of it all, but usually this only happens when he's not feeling well for an extended period of time.
Oh- the feeding tube- yes, he has one, as he isnt able to swallow. I beleive it is still possible to eat after having a trach put in- as long as the ability is still there. Joel would know a little more about that.
Please let me know if there is anything else that you'd like to know about.
 
I am in about the same condition as Liz's PALS and look at what I can still do with specialty devices and programs.
I could still eat and talk for about 2 years after getting my trache and vent. That all changed about 6 months ago.

Life is what you make it. Most people who are in the same condition as me stay in bed and give up trying to use their computer, etc. I am different that way, someone gets me out of bed every day and parks me in front of my computer. So, here I am.

According to my doctors I have been dead for 4 years now. I refused to believe that and here I am.
 
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