These were my questions in the early years of my time at home with Ray as a full-time caregiver. Who am I if I am not a worker? was the basic one. I had a responsible job and there is no way I could have continued with it. I did look into affordable care for Ray so I could have continued working but but my whole wage would have been absorbed as he was 24/7 due to his balance issues and his recklessness (inability to discern if something he wanted to do was beyond his current ability). .

I wondered about at home jobs like consultant for??? but never really worried about it. I knew Ray was my 24/7 job and that was it. What I did do was get absorbed in other things, church, Lions Club, stroke support groups, dementia groups, the last initially because of Mum and then of course Ray was diagnosed with vascular dementia. In self-help and supported groups you do get to do some socialising as well and if Ray complained I would say: "i am doing this for you remember? So we can lead a better life." and his objections subsided.

Now is a good time to look to the future and see how you can have a life where you do get some of what you are looking for. If you can't find a group that meets your needs start one, even if it is four stroke caregivers and a once a month meet up over coffee it will fill the need. You have to get what you can out of life, the stats say that the caregiver often dies before the one cared for so use the time you have to get the life you want, within the limitations you have.

Sue.

I agree with Sue but Nancy you have so much more to deal with than I do. Loss of friends, loss of purpose, other than caregiving, and even loss of family life. It would be good for you to start a caregiving group and meet others who have similar issues. You would be a good advocate for them and make new friends as well. You are lucky to have such a good family support but I understand you need more as you are yet so young.

Best wishes and hope the new year is good to you all.

JulieI

Nancy: I chose to go back to work part time for those exact reasons. "Debbie" was being absorbed and while that would have been OK if Bruce did not recover as well as he did and continues to.

And yes, I have a wonderful deal doing what I love. But you have to keep in mind that I can leave whenever I need to - I am not responsible to the Patients. I do a Stroke Caregiver's inservice when we have a Patient who is ready for discharge and I wrote the protocols for discharging a Stroke Patient. I am saying this only to show you that there are so many avenues that I never considered when I decided to go back to work.

Yes, Bruce is cognitively more recovered than Dan. He accepts that I am out of the house and looks forward to me coming home and sharing my day. So it is therapeutic for him as well. Like Sting's Happy Hour, this was so much a part of our life before stroke and I really think it brings Bruce back to reality, daily normal life. At least for a small amount of time. Initially my paycheck went to the carers I had to hire for Bruce, but within 2 years, look where we are now? Can I not say my going back to work was an incentive to him to become more independent?

Put some feelers out honey - network with some of your work buds and do chat with Dan's nurses and staff - one never knows. Debbie

Nancy: you know you will accomplish what it is you need to do, the hardest part is to find out what the right thing is at this point. And unfortunately I don't think it's what you did before, that would be too easy. Life isn't about what we thought it was a few years ago. You out of everyone will be the one that can turn it all upside down! You've been like that from the start, while the rest of us sat around feeling sorry for ourselves.

I miss my old job(s) too but block it out of my mind, figure at least I had it while I could. I am also learning to block out some people that aren't contributing anything to our life, it's too short to waste time on them. I often wonder why was I basing my worth on a job, working for a boss? We're just hitting the time of recovery where things are leveling off and we can finally think "what if?" What if this never happened? Where would we be? It was like the world was spinning around and we got knocked into outer space, and now the orbit is allowing us to re-enter earth's atmosphere. Here we are again world! Let's give it another try. Let's forget all the bad stuff.

It's just growing pains,we're going to be OK. I really think so!

Hi Nancy, just wanted to tell you, you be okay. I think the job you are doing is wonderful. I keep on saying this, I have never though about caregivers, till I came on strokenet. Now Nancy, you have the time to think about you. It will come Nancy.

When I was told no more work I felt worthless, society puts our worth on our work life . It has taken me three years, but I feel good now. I keep myself busy, and now sign up for fitness classes. Really me and work is done. I would like to get involved in some volutary work , not because I have lots of money, but it be good for my soul.

Yvonne

I do tend to do things a bit unorthodox -- LOL -- only i ( i am sure others somewhere to) would decide "black jack " and gambeling is therapeutic---- it is - he has to socialize, be appropriate ( or quiet) , not spill someones drink, not fall off the chair, play the cards hopefully the multitasking pays off... my next plan and I AM NOT A POKER PLAYER -- at all... is to work on video poker with him- a bit more "thinking" but with it being video, no pressure while relearning... I doubt it will be as engaging there is a certain socializing aspect that goes with his black jack playing... and he is a celebrity of sorts in the bar we play in most often... he is kinda like "norm" from cheers..... and man do the regulars "take care of him" and i believe they would run a "meanie" off if one tried to "pick on Dan" but i am about 4 feet away and someone would get knocked on their a-- if anyone got mouthy or over rude.... we dont do the table if we don't know the players , ( we usually do) and if a newbie comes it is on them to see and accept dans playing style --- he is not a team blackjacker - his goal 21 .....

So i will need to put thought into who , what , where and most important IF... i can do anything constructive.......... right now my most immediate goal - let the dog out ( lol) --- good nite all-- and thanks for caring enough for the feed back !! we will get there - or at the very least eventually summer will come and i will have yard work ....

This time of year is so depressing, that's probably all it is. I'm starting to plan my garden and that helps a little bit. The other yard work, well I'm not looking forward to that quite as much!

Nancy, I've re-read your post about half dozen times, trying to think of a response that was useful. I don't guess I have one, I can only share my own lifestyle, which is opposite, so no help, at all. I have had a couple of jobs that I loved the people I worked with, and they thought I was the best at what I did. Those kinds of jobs are really fulfilling. But they were not 20-40 year jobs that felt like 'this is my life'. I think the most was 5 years, maybe. I think that matters, because it does feel like 'who you are', if it was what you always did. I basically worked because I didn't have a child and so what was I supposed to do with my life. When I had one, I stopped working. Then and now, even though I really enjoyed at least 2 of my jobs, there were some others where the supervisors/people loved to make everyone miserable. While raising son and now with Bob's stroke, I've always felt immensely blessed that we had enough disability that I didn't have to spend my life pleasing someone else, but could spend it taking care of my own family.

But yea, I saw Bob suffer from loss of his 'identity'. Day to day, he didn't suffer, as his brain didn't have enough working parts to think on it all the time. BUT, the day we went and cleaned out his office, was hard on him. The next day he woke up saying, "I'm Bob, I'm Bob, I'm Bob". Me: I know that.... Him: I'm Bob, I'm Bob, I'm Bob". Me: I know, why do you keep saying that? Him: I'm Bob, I''m Bob, I'm Bob.... when people look at me, do they still see that? or just some old guy??? He lost his image of who he was, and was trying to reclaim it in expressing, "I'm Bob". Thank God he doesn't think to dwell on it everyday.

I've had people comment, my whole life, that I was so smart, but it was being wasted because I wasn't working. I always thought I was so smart because I wasn't under someone else's thumb!

Anyway, minus the job, I do often wonder what we'd be doing right now, what our lives would be like, if this hadn't happened. The only way I can let it go is to think of the people I know who were out living their lives and were killed. We think we'd be living better lives, but maybe not, maybe we'd been killed in an accident like the 4 other couples I know. Then I'm able to sigh and just think, "oh well, we never really know if we'd be better off or not..."

I'm also a bit of a loaner, and like being on my own, so don't miss others. I'm sorry you are feeling that old empty feeling and hope you can get something going that feels better. Are there still things like online jobs? I do think you are highly skilled and do fantastic 'work' every single day, but true, no exchange with others. I don't know how you do so much now!

Just thought of something... I've always thought of my home as my vocation. It takes a lot to run one... cleaning, bill paying, shopping, cooking, washing... and now, gutter cleaning, grass mowing, blah, blah, blah.... So, this HAS actually been my job / vocation for 40 years, I guess it does define who I am and how I see myself... so I still have my 'job' (identity)! I just can't figure out if I've been promoted or demoted!

Nancy :

I struggled first 2 years after my stroke with who I am if I am not Asha software Engineer who made big bucks, then who am I till I realize I survived for a reason & still got chance to make difference in my family's life, even though some days I struggle with not feeling appreciated with all right things I do in the house & get criticized for things which did not go according to plan. problem is even though family will not notice I am usually so hard on myself with criticisim chatter in my head. Anyway for me volunteering at the places I care about & ofcourse chatting & blogging all has helped me deal with my depression. I have found exercise & routine has helped me recenter & enjoy my life again. you need to maybe look into volunteering position which ,might get you out of the house & some interaction with people without any pressure & you will be able to find something that captures your interest.

Asha

Hey I am not a caregiver but I do admire your strength. I wish I had someone who cared about me as much as you do your family. You are so strong and caring. Your blog caught my attention in the beginning because I miss work sometimes too. I was so great at school and being a student so after I graduated it was like well what do I do now? I understand how you feel about work too. With all of my doctor appointments and therapy sessions I just could not work up to my fullest potential as an employee. I miss my team of co-workers. I didnt love my job but I loved being able to say I had one. I miss the jokes and life lessons I learned from co-workers and regular customers. I have a degree in criminal justice but I definitely cant do any law enforcement work so once I decided I didnt want to pursue higher education my 4.0 gpa in criminal justice and sociology pretty much became useless. Its easy to say just go volunteer or pick up a new hobby but I understand how you feel when you're so busy you cant commit to volunteering and you have to have the free time and passion to start a new hobby. Well just want to say again you are strong and really appreciated. I guess your purpose right now is to be a caregiver and homemaker instead of employee.

caged bird---- you enjoyed being a student how about "auditing classes" where you basically sit in for no cost in the class ( if there is a seat available).......... our local college does this but of course other colleges may not, just a thought since you are a student... of course my advice ( for lack of a better term could apply to myself as well lol) but being a student isent my " cup of tea" but with your grades ( wow) if it is a option it might be a thought...