For Better or Worse

[jriva]

 

Hi Everyone,

 

A conversation in chat is inspiring what I hope will generate a dialogue on the message board. We were talking about survivors who used to work and who now have to let their spouses be the sole bread winner. What kind of stress is unique with this scenario? What kind of guilt, if any, goes with the territory? If you are the survivor, have you had to learn any new skills to help out at home? Do you help out where ever you can? Do you feel as if you

[tdehaas]

Hi JR

 

I have been meaning to get back to this topic for a few days but have been busy.

 

I recall the evening in chat that I was discussing these issues. My wife and i have had talks about this subject over the past year and a half since my stroke.

 

I was reading a comment in a blog that put the topic in a nutshell for me. Thanks Karen

 

" My husband and I both lost our choice to work. He now can't work, and I now have to work."

 

Except the shoe's on the other foot in my case. She is the major breadwinner, and I don't think she was thinking that was what was going to happen when we got married twelve years ago. So i have some guilt feelings in these regards.

 

The upside is that although i 'm disabled to the point of qualifying for my SSDI, I'm fairly independent and i have the ability and plan to try and return to fulltime work in the future, even if it's back to my sideline business.

 

Irrespective of that i still feel bad for her, being forced into the breadwinner role. I know she would be working, stroke or not, it's just the lack of the option that

bothers me. Must be the chauvinist in me.

 

I have joked with her and others about being a "kept man', but i sure deep down it's not all that funny to her. Many men would love being in this spot, but I think i'm too old fashion and proud to really get into it.

 

I expect things to be diffrent in these matters next year. hopefully

 

Would love to hear from others familiar with or in similar circumstances.

 

There's been a lot of discussion here lately on role reversals and pre/post stroke lifestyle changes in relationships.. Must be the season or the weather..

 

As i recall part of that same chat conversation concerned the uniqueness of your's and Don's situation. A la. .. you married Don after the stroke....directly opposed to many others here... Hard for you to say that you didn't know what you were getting in to .. like folks here who comment just the opposite. i find that interesting myself.

Maybe i should save this for another thread..

 

 

Tom

[bstockman]

I was not the sole bread winner, but I had the "steady income" and carried our health insurace. My husband is self employed. Business is pretty good some months and other months on the "lean" side. He has been in his current location several years and has expanded the business from copy & fax machine sales & service to also have a small self service copy center with some printing of business cards, etc. He is also getting some local businesses that are having monthly print jobs.

 

I felt guilty/sad I could not return to work, because of the health insurance and income, but I also loved my job and I highly respected the Dr. I worked for..we were a good team had worked together over 6 yrs and knew it would put a strain on her also. I knew exactly what she wanted and how to set up for her procedures, etc. Of course the stroke hit suddenly and I did not have the opportunity to train a replacement for her. I did have index cards for each procedure etc. but not quite the same as teaching someone.

 

I am thankful I can walk, and though have some cognitive deficits. I can cook, do laundry etc. I do at times feel guility that I can not help around the property ...we had bought unimproved 5 acres and there is still much to be done.

Bonnie

[Kj mcmeekin]

Hi Everyone:

 

My husband was the "bread winner" of this family. Yes I did work - but in no way did I make the money he did at his job. I felt useful because I said that my wages would always put food on the table and would be our "crazy" money to do special things and I would put my wages away for X-mas.

 

Well, now that has all changed. Chris is on disability, but as we all know - it barely is enough. So my role has changed to "bread winner." No I'm not angry - I do work alot of hours - more than before - but we make ends meet. I do know that Chris is angry and constantly feeling sorry for me because of how hard I do have to work now. I do my best to try to get him to understand that this is O.K.

 

I do definitely believe in the phrase "for better or for worse." Chris is still Chris - even tho this has happened. My love for him has in no way changed - and I feel that my love for him has deepened. Just because right now we are living the "worse" doesn't mean that you throw everything away.

 

I really think that you need to think about - How committed are you in your relationship with the survivor?

 

My husband has brain damage now which has really changed things - he cannot stand - walk - he cannot take care of himself - BUT, he is still my husband and we will be together until the day God takes one of us!!!!!

 

Of course this is just my opinion of my own marriage and everyone must do what is best for there own situation - but I would hope that no-one would throw away a relationship just because of an illness.

 

Kim

[jriva]

 

Tom,

 

Even though it took a stroke for us to officially get married, Don and I have been in a committed relationship since 1970. He often joked to people that we were married on the weekends and we've always thought that our relationship---even though we lived a mile apart all those years---was better than most of the married couples we knew. We certainly spent more time together than most married couples. I don't view myself as any different than any other caregiver on this site who stays with their survivors out of love and doing the right thing for the right reasons. Fortunately, we were at an age where we could retire after the stroke, so the bread-winner/role reversals that have been hotly discussed in the blogs has not been an issue with us. But I'll accept one of those prizes for making the most post stroke lifestyle changes.

 

I don't doubt that the chauvinist thing enters into your feelings on your wife working. You're younger than me but still in the age bracket where kids were brought up thinking of a household as "man brings meat home, woman cooks it." However, I also think that Karen's blog comment about neither person in the post-stroke couple having a choice about working or not is a bigger issue. Strokes take away so many choices for all of us, survivor and caregiver alike and acceptance of that fact is a hard pill to swallow.

 

Jean

[tdehaas]

I think Sandy hit two birds with one stone:

 

Lots of sexism in our society which affects our discussion as well as the demographic/psychographics of the site active membership and participation,

 

Tom

 

PS wish I had a Reservation

[markus29]

I just read this post and I had to respond as my situation is a bit different but still the same. When I had my stroke in Sept of this year I was engaged. He and his 2 boys had just moved into my house and we had only lived together for almost a month. Being a VERY independant mother of 3 boys it was that much more diffuculton me. I had to give up not just the independance of making my own money and providing for my own children but also had to have so many things done for me. My fiance couldn't understand why I couldn't just let him do it all for me. It made it even more difficult starting to adapt to a new family but to have everything taken OMG it was and still is hard. I had to leave my job so I went from paying my own bills to having to ask someone for money to buy a soda. I knew starting a family again would be hard but never thought of doing it this way. My fiance' and I have had many problems but I give him so much credit for not just throwing in the towel and walking away from all of it. That is TRUE love. Yes I understand when you are married you can still walk away bt this is a bit different as we had not made it legal yet and there was really nothing holding him to me. He not only helps with things around the house but also gives up his paycheck every week for the household bills and MY bills I had before I even met him. I can honestly say I must be very lucky. Right now we are going thru a very dificult time and I firmly belive part of it is because of the way I have changed since the stroke, but I will not blame our problems on this stroke as it is a small amount of it. This gives the saying for better or worse a whole new meaning. It also goes with richer or poorer and hopefully till death do you part. I count my blessings everyday as things could be so much worse.

 

Ruth

[calendulady]

When I had my stroke, I was the main breadwinner in the house. My husband is a musician (solo singer/songwriter) and worked several evenings a week. He is still performing and recording, but my stroke and need for 24 hour care has put a real damper on his availabilty for touring. And his recording of CD #4 has been all but squashed for the time being. We have gone through every bit of money we had and have also tapped out any resource that could possibly lend us anything.

 

But still Doug (my husband) starts each day supportive and optimistic. He tells me that my health is what matters - the rest will fall into place.

 

Have a good evening.

 

Debbie

Stroke Survivor 9/11/05

[kkholt]

 

He who has the gold, makes the rules

 

-Karen

 

 

[swilkinson]

In 1999 Ray and I went on what was to be ten days holiday. He had two major strokes and we were both "retired" me in June, he in December when his sick leave ran out. We are lucky here as we both get pensions, he gets Disability and I get Carer's because he requires 24 hour care.

 

After his first stroke in 1990 I had retrained to go back to work full-time thinking that that was what would happen, he would have another minor stroke and I would take over as breadwinner to give him time to recover. I didn't realise that a couple of major strokes would mean the end of working for both of us.

 

I guess each couple has to adjust to the breadwinner/caregiver situation as best they can. It is not a choice but it works out better if each partner accepts the other's new role.Pride shouldn't come into it. We just each do what we have to do.

 

Sue.

[spokangie]

Hello,,Before my husband's stroke we both worked, I 3 days a week in a Dr's office, long days, he as a engineer for the US government..That changed when he had his stroke. I took a leave of absence to be by his side while he recuperated in the hospital. That turned out to be almost 6weeks, but my job was there when I was able to return..His stroke was major and left him no choice but to go on SSD and retire from the job..I thougth that once he got home I would be able to return to work so at least we could have a income small as it was..I did return for a month while he was in rehab only half days..Once I realised that he will need 24/7 care I had to leave my job..It was very hard for me, it felt like I was leaving my second family..That took care of the extra little we were getting, so now we became dependend on the retirement and SSD..I tried to get assistance caregivers pay, but in our State the only thing that is available is DSHS and that you have to be under a income guideline..I did not qualify for unemployment because I was not available to search for work, there went 18months of paying into it .I joke now that my retirement came early, but given the chance to be honest I would rather work outside of home..I have thought of finding work from home but then I look at all the times, I start something and he calls for me..That just wouldn't work, he still requires my attention, besides I would rather focus on him and make sure that we work at his recovery..So far our income has carried us, but it still makes me feel worried about our future. Neither of us thougth of extra coverage for senior care and now it is too late, at least for him, but expensive even for me..

I guess you could still say that he is still the primary breadwiner as he brings in more. I have a small pension that helps out a little..What I bring to this household can not be measured in dollars, just like any other caregiver that has had to leave her job and exchange it for another one, one that pays in love not money..I'll settle for that for now, I still keep hoping that some miracle will happen and he will be a little more independent..that maybe one day I can find something that would suit my experience and allow me a few days a week, to supplement our income..

 

Good topic,,

Happy New Year all.

Angie

[Keepongoing]

When Rod had his stroke the friday before memorial day weekend 2003, he was in the process of help his company close their doors. Because he was working as a subcontractor he had lost all of his insurance. I was laid off a couple of weeks later which was just as well. I spent the rest of the year working with him full time on his rehab and luckly he made enough recovery to be left alone during the day while I work. We were able to get him on Soc. Sec. disability which helps. The job I got in my field forced us to move away 6 hours from family. It has it up's and downs. We spend a lot of time together and we have a really good relationship. He was really down before the SS came in, it finally made him feel like he was contributing. I have always been a bread winner in our family so I don't think that bothered him just that he wanted to do his part. He has learned to do laundry and dishes which is a big help. My job is flexible enough so I can be there for him and it's 10 mins from home. We are still going to try and find something closer to family. If I had not had to go back to work I would have stayed home. I have summers off and I find Rod does so much better when we have constant time together. We just make each day count the best we can.

Lynn

[HostAsha]

Jean:

 

I was not primary bread winner but was good contributor in our earnings, so when it became zero that did hurt my self esteem that I m worthless now and burden to household, but my hubby's love and patience and LTD checks gave me good confidence that there is good side to this damn stroke that I m stay at home mom who also gets paid, and I try to do lot of household work such that his title is sole breadwinner, though I m not there yet but getting there slowly with speed of turtle of becoming good 1950 housewife

 

Asha

 

[Deenie]

 

i know what you mean in life changing... My hubby is still getting better and his attitude has changed for the better... we used to do every thing together and he was the one more suited to the type of work we did,, I sort of followed directiions and didn't pay as much attention as I should have as to how things were done....now when we go to do the same tasks we run into different ways to do the job ...as he gets some things reversed sometimes.... I am hoping that this will change soon as it's very hard to get anyone to help....we are lucky that we had other income to fall back on and don't have to worry about some one to look after us...I pray every day that I will stay well enough to look after his needs as he still can't make the decisions one needs to to carry on with every day living..... hope some more myofascialrelease therapy will help , so for now and always I will be his caregiver and partner and hope he will be able to respond to his care and therapy in a positive way..this is the greatest site and you all are great and very supportive...... must learn to blog....