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Topic Quitting work Go to previous topic Go to next topic Go to higher level

By mylove On 2012.02.08 23:47
My spouse is feeling increasingly more and more tired on a day to day basis. He asked me what I thought about him quitting work entirely. As of right now, he doesn't have a plan on what to do after he quits. It's not the money issue; it's what to do with his time.

I've seen conflicting views on the how-long-to-continue-working issue. Some say it's the best thing for people, because it keeps you going, gives you stimulation, and something to get out of bed for. Others say it's just too hard to continue getting up and going on a schedule. Has anyone else crossed this bridge? It's a final decision if he makes it. I'm very afraid of making the wrong one and not being able to change our mind. And of course I'm afraid of him suddenly losing ground. I don't know what to think.

By lurkingforacure On 2012.02.09 07:53
mylove, to me, this question faces everyone. It's just a matter of when. If your spouse doesn't quit now, he will have to next year, the year after that, etc. The decision of what to do after he quits is inevitable, and to me, the biggest one.

My husband recently went to part time, not by choice. The fatigue was unbearable, not to mention the pain. The amount of stress at the small company was overwhelming for many reasons I need not go into here. The meds were too unpredictable, symptoms flaring up whenever, not to mention no one would leave him alone and every ten seconds someone was popping their head into his office "just for a sec". Everyone knows he has PD, but no one seems to understand what it means for him (or they do, but are selfish pricks and don't care as long as they get what they need from him).

At any rate, the thought was he would gradually move his office home and do some remote work, which is possible....but our house is tiny, he has no dedicated office (a space in our bedroom is NOT working!) our kids are loud, there is construction and dogs barking and all sorts of noises that make that very hard. We didn't think about that.

What I am seeing is he is getting depressed, as he no longer has the distraction of the goings-on of the office. He is also depending on me more and more to be his "reason", and it is, well, let's just say it is very very hard. I asked him what he would like to spend time on and he has no idea.

I would definitely think about exactly what and how your spouse will be spending his time once he leaves the office. And again, this is a question we all face, really, PD or not. At some point everyone quits work and has to decide how they will spend their time. It is disastrous to have no plan: my mom left her job and less than two years later she died. Granted, she had medical issues, and they were significant, but nothing I didn't think we could not handle. But I didn't factor in her sitting at home all day, not working and feeling without purposes (depression-era baby, worked all her life, how could she not be working or doing something productive?) She just could not wrap her head around it and I think as her medical issues got worse she just mentally gave in. It is very common, actually.

So if your loved one is having a harder and harder time getting to work and getting the work done, you have to weigh whether the progression from all of that is the lesser of two evils. And plan for when he comes home, because that is inevitable. I hope this helps.

By packerman On 2012.02.09 11:48
my hubby retired 5 years ago at 50 due to some of the same reasons you mention. he "works from home" selling things on e-bay. he also helps me with a ministry we co-coordinate. could your husband find a hobby he could turn into a small business that he could work on when he has time and energy to do it? is there some ministry or project that he has wanted to do and now it could fill his days? granted there are days when mine is too fatigued, or his meds are not working when he sits and watches t.v. for hours, but then when he has energy, he feels fulfilled with his "at home" work.
good luck on this.

By seawench On 2012.02.09 18:28
My Hubby retired last year @ 57, we are resident managers of a ministorage so I was able to take over the Mgr position, but only after I had to resign from my job outside the home. So as a result both of us had to quit our jobs and it was a sad day for both of us and it was very emotional moment when we handed in his resignation. To make it through this transition we focused on all the benefits this change would give us. I am still in the workforce but I still get to be at home with him all day. He was an areospace computer tech before he became ill so he fixes and repairs other people's computers. He can do this in his own time and do a complete job without the pressure to "Turn out". People understand that they are contributing to his therapy and helping keep his cognitive juices flowing and they in turn get a great and inexpensive tech (He works for Ribs- Yum!) It's not just about keeping busy but feeling relevant. He is able to help others who in turn help him.
This is a big step to take and hopefully you will come up with some ideas to help recreate your daily life that will accomodate his good and bad days. With a little planning you can hope that down the road you wished you had done it sooner- Good Luck!

By mylove On 2012.02.10 00:52
Lurking, the work situation you described sounds so much like what mine is going through. They all know, but because he looks so 'good' they take him for granted. They use, abuse, and stretch him to the absolute 'nth degree, until by the time we go home at night it takes five hours alone in the garage with the quiet for him to wind down enough to spend some time with me (outside of dinner). I don't begrudge him that time, but it makes me angry that work takes more of my husband than I get. And they don't seem to care. I have been seeing a counselor for a long time, with whom I discussed the work issue. I mentioned that I felt like marching in there (because we work for the same company in different departments) and talking to his supervisor about running some interference for him so he can at least complete a task without the constant petty interruptions and people who stop by to drop 'oh, just one more favor, pretty PLEASE' on him at the last minute so he can't get *anything* done. I told him I hadn't done that because I don't want him to feel marginalized, or that I'm interfering. But - he won't tell anyone no. I watch them suck the lifeblood out of him like so many emotional vampires, and I can't do anything but comfort him when he gets home. Worse, often *I* have to come to him and ask for things that my department needs, so I'm adding to his burdens. I totally understand his need and desire to pare that situation down.

His thoughts are similar to all of your husbands' - that he will work as a consultant from home in his normal field. It's true that he's made several contacts outside our agency that he could probably pursue. The only problem with that is that they are for the most part finite jobs; once those leads are completed, then those jobs are done, with the exception of data updates, etc. He has several hobbies, most of which I share (we refinish furniture, fish, garden, etc), which he could keep busy at. But we are in the suburbs with no outside friends. I'm afraid that even though he doesn't socialize much at work, it's still more than what he would get with just me. And I'm not retirement age - I'm only 43, so I'm obligated to be gone 8 hours a day 5 days a week, leaving him alone with the dogs and cats which drive him crazy. I had held out a crazy hope that I'd have sold a manuscript by now that would allow me to be home with him full time when he chose to retire, but so far my writing and art hasn't grown to be able to support us.

Seawench and Pat, thank you for those good ideas to help keep him engaged. That's what I hope we can do. One of his biggest reasons for keeping going was the fear that if he sat down or stopped, then he was stopped forever. After many years of listening to him say that, I've come to believe that myself.

I told him tonight that whatever he decided to do, keep working, go part time, or quit, that I would support him 100%. One of the things I asked him to do, though, is to have a clear plan for how he is going to do it and what he plans to do with his time. I think he needs to plan for how he is going to get out and socialize as well. We have no network to speak of. We have acquaintances at work, and four family members in the immediate area, but we don't belong to churches, support groups or service groups. I sometimes wonder if we are poorly set up for what the future holds, because most of the time we are our own little island here in this house, and we like it that way. But when the chips fall, maybe that's not the best way to be.

I'll keep you posted on what he decides. He found out today that it only takes the neuro's recommendation and an acknowledgement from his employer for him to drop to half time or quit entirely and go on disability (his claim has been preapproved for years). That makes this an uncomfortably quick process should he decide to make it. I think the emotional transition might take a bit longer.

By LOHENGR1N On 2012.02.10 16:34
I've been reading this thread as it grows along. I can't tell anyone what to do work or no. I can tell you it does take time to adjust to not working. I used to fish a lot, catch and release them until after a few years I was on a first name basis with most of the fish in the county! Dang Fred you must have grown two inches since last year etc, etc. Fears of not working are fears of the unknown. What do I do now or today or this week? Fears of working are can I do it now? Today? or the whole week? Both fear of the unknown. Add to that the fear of our disease.....will it worsen today? When I wake will it have progressed to a point that I won't be able to work tomorrow? All fear of our unknown and a real fear it is. For all involved it is fearsome. If I keep working do I work until I'm forced to stop and have nothing in my tank for life after the job ends? When should I stop? When I find myself saying I can make it through the day or till lunch at least or from break time to break time? What will I do with my time if I stop working? What's my plan to occupy my time? All these are personal questions and as so each person has to decide. Deciding involves each persons work ethic and back ground, also the profession involved. As I said I am sorry I can't say work or not. All I can do is give my experience of this.

I was forced by Parkinson's to stop working. I didn't plan it, I had another 30 or years to make up my mind of retiring or not in my future or so I thought. But that wasn't in the cards so to speak. To me here viewing in hindsight if this question is arising then it might be time to seriously consider a change of "plans". I put "plans" in quotes because while taking about them, really, they are an illusion in my disease riddled mind. Mostly this topic arose because now there might have to be a change in "plans" because of Parkinson's Disease. How many times do plans change because of Parkinson's? If We think about it , couldn't make a function because, had to leave early because, almost made it there but, our lives (everyone involved with our lives) are in a constant state of flux because Parkinson's Disease seems to thrive on making us change "plans"! My only advice I can give realistically is if you decide to stop work be prepared for any "plans" to change. Do what you can when you can, take it one day, hour or minute at a time. Don't beat yourself up because something isn't going as you "planned" it. Try to enjoy as much as you are able even if you have to enjoy it in a different way than you had "planned". Take care, best of luck and hang in there.

By shakydog On 2012.02.10 20:01
Thank you my friend for your perspective. You always seem to see clearly the heart of the problem and can gently remind us of our responsibility to ourselves and our loved ones to live our lives to the fullest.

I have been playing the mind game you describe - I can make it another couple hours - starting at 5:30 every morning and lasting until after dinner. I don't think I am doing myself or mylove any favors by proving I can keep going by strength of will alone.

The best laid plans of mice and men -
aft gang agley.

By shakydog On 2012.02.10 21:34
Ladies, I am grateful for your input and support. This is a trying time and it shows the concern you have for us that you take the time to offer your help and suggestions. Thank you

By lurkingforacure On 2012.02.11 15:04

I gotta reply as your situation is very similar to ours. I wonder sometimes about our lack of a stable network of support but what I have read and seen is that so many times, a large portion of that network you thought you had disappears when things get tough. Just reading this forum has shown me that many people simply cannot deal with having a friend with PD (or any illness, really, it's not just PD) and will bail on you. Not that it makes me feel better, things are what they are, but I no longer think that not having fifty "friends" around you necessarily translates into the support network you need down the road.

I also totally know what you mean about work vampires. My husband is and always has been the "step up to the plate" guy who knows everything, and everyone knows it. While he gets a lot of respect, which is nice but really, big damn deal when you have PD, it also means that everyone comes to him and they refuse to acknowledge his limitations because of the PD. I would also add in here that these vampires come in the family form, as well, which still shocks me that family would continue to suck the life out of a sibling they know has PD.

I know this probably doesn't really help you any, just know that you are not alone and others out here are dealing with many of the same issues.

By moonswife On 2012.02.11 16:41
Two cents worth.....My DH worked for a major metropolitan newspaper from the time he was delivering on a bike at 10 until his PD forced him to stop, finally ending up a Circulation Manager. The day he was to turn in his keys the stress triggered a seizure. That was in 2008. He was 62 years old. He only had one more seizure, 4 hours later when he was hooked up to EEG equipment. None since. He shook 24-7 at that time. He had lost a lot of weight because he was never still. After the gauntlet of tests our HMO, Kaiser, put him thru, he qualified for DBS. Kaiser does VERY FEW of these surgeries. You must be an ideal candidate. He had his surgery in Jan of 2009. What a difference. He could have gone on working after the surgery, but 50 years of getting up at 1:00 am to make sure papers are all delivered by 6 am was enough. (We still have never met another manager that had the work ethic to get up when the troops that deliver papers did.)

Was adjusting to retirement hard? No, because he has beaucoup hobbies, including designing and building teardrop trailers. He is working on one today. Has he declined. Sure. Clumsy? Sure. Tires easily? Sure. 35 pills of different kinds, colors, & shapes a day. without missing a dose.

Too much to do, too little time. He got a recumbent exercycle for Christmas. He is riding across America from So Calif to Maine. 10 minutes at a time. 6 times a day. After doses of Sinemet CR. Have his work folks stopped calling? Most have. But he has made new pals though his hobbies. Mylove, I have decided that spousing is tough. He may or not get the privilege of making the choice. PD might make it for him. If it does he may not be quite as easy to live with. When I feel like grouching, I try to think of how he feels. Life seems like it did when we had our babies, up all night and not much rest during the day. Make the most of those days. The loneliness ahead of you and I will be much worse, I am sure.

By karolinakitty On 2012.02.13 10:53
Just my one cents .....but I don't know how we could handle working with the schedule we keep just wouldn't fit

By mylove On 2012.02.13 13:02
There too, is the rub. Guess how much of our vacation/sick leave is spent on appointments of one sort or another? At least this would give him an extra couple days a week to schedule those. Bright lights in the darkness....gotta grab em! :)

By mylove On 2012.02.14 01:46
And now the fight really begins.

Now that he's told them he needs some accomodations for his disability, they've played their trump card - if he takes a reduction in hours then they no longer consider him a 'full time employee' - which means he forfeits his health insurance. After all these years of giving them his heart and soul, to the point where giving to work was taking from his years of health - this is their first comment. Not "How are you?" or "How can we help make it better so you can stay in the job you love?"

Even better, this is the place I owe the rest of my work career to, until I retire. It tastes pretty bad in my mouth today. Let's hope they reconsider when they've had time to think about what it would mean for him to leave on the drop of a hat with no one to replace him.

Trying to figure out what our rights are in conjunction with disabilities in the workplace. So far it seems like they can't do that when he's asking for an accomodation in order to remain working....

By lurkingforacure On 2012.02.14 08:42

I don't know what your rights are, either, but I will say this. When I was working, I saw a lot of companies basing decisions not necessarily on what would be best in a situation if that were the only situation that would ever exist, the precedent the decision would set.

In other words, your spouse's employer MAY want to give your husband what he wants/needs, but it can't, because it will open the floodgates to every Tom Dick and Harry who will try to exploit the generosity. I have seen it several times, and it is very sad that the few greedy SOB's out there ruin things for everyone else.

The company may also have attorneys telling them they shouldn't do this or that for this very reason. You have to look down the road and see all the ramifications of the decisions you make on behalf of a company, good and bad.

If it looks like this is an issue in your husband's situation, I would consider going to management and seeing what could be worked out, taking these concerns into consideration. The size of the company will make a difference: it seems like there is more leeway in smaller outfits, for obvious reasons. So sorry you are in this situation, particularly having to continue working there yourself.

By mylove On 2012.02.14 09:26
I totally understand that concept. I'm in enforcement myself, so I deal with the issue of working with people for compliance vs setting bad precedents frequently. I understand, for example, why they won't let me use my sick leave for his appointments when we're not actually married, because we had a few people who took days off on the clock and lied about them.

However, I also saw HR hold a woman who had 30 years of loyal work with the company at her desk while her husband lay in the CCU at the big city hospital they flew him to after his stroke. She sat at her desk and cried, because it didn't look like he was going to make it and she'd run out of vacation time. Company policy says that in extremis, fellow employees can donate their vacation time to someone that has run out. Several of us offered, but she wasn't given that option. Precedents work on both sides of the equation. I see those things. I also see that we have a brand new building that somehow politicked through the cracks and didn't have to put in ANY handicapped spaces around it, so anyone needing one has to park in the rear lot behind the building and walk to the back door to get in. I don't hold a lot of hope, but then again, we have to have faith. His department (the whole company, actually) loves him and what he does for them. Hopefully they'll go to bat for him and be able to work something out. Like I said, this is the first salvo, so hopefully there is a middle ground to settle in.

By the way, for anyone who may be going through or soon to be going through this sort of thing, Shakydog is the King of Research. He found this link, which might be interesting: It has info on accomodations in the workplace specific to PD.

(BTW, I LOVE your term: work vampires. That's exactly what we have!)

By moonswife On 2012.02.14 22:16
I think I would be looking for ADA advocate in your town. They love the challenge.

By LOHENGR1N On 2012.02.15 08:48
The Americans with Disabilities Act, looks good on paper however in action it can at times be lacking. There are many gray areas in it. Depending on the size of a company many improvements or accommodations might not have to be made. As an example a large company would bear less of a financial burden making some changes than a smaller company so if a company can claim financial hardship if those accommodations are met they might not have to make them. Each work place is different as is each situation and have to be looked at individually. Even then it can leave you scratching your head asking what the?

A simple case in point. Many years ago when I got my first service dog the state of Massachusetts exempted fees for licensing Seeing eye dogs and hearing dogs. They charged no fee for your dog if you were blind or deaf. I'm disabled too and need my dog to get around. Simple right? I called the ADA, related my problem to them figuring I'd hear we'll get on it and correct this discrimination against you and others who rely upon service dogs in state to aide them. Nope, I got a we're not going to touch that one! Their reason was "We are hear to make a level playing field between disabled and non disabled. The state went above and beyond in exempting those dogs. If they were charging you more because you are disabled then we'd get involved but since they are not we won't. Visiting my state senator and rep we submitted change to include any service dog trained to assist disabled in quality of life and living be exempted four and one half years later the law was changed to include other service dogs.

I hope all goes well with your changes. As we know everything doesn't work peachy just because it looks good on paper. Best of luck and give'm hell. Don't give up keep at it because you CAN change things. Take care, best of luck and hang in there.

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