self-compassion

[annabanana]

I am my husband's caregiver...and I feel as if I live and breath his illness. My friends/family tell me I need time for myself, etc., and I know this is true, but it's hard...esp. when I fear that when I get home, Randy will be really sick or worse...
I guess I relate EVERYTHING back to Randy's illness, because friends tell me I need to separate my needs from this situation. But how to do that??? What I NEED is my husband to be okay.
Annabanana 

[Ohio Buckeye]

I'm sure many of the caregivers here for their husbands feel just as you do.

[mysty]

You know Ana.. I was my grandmother's caregiver while she slowly dealt with the cancer that wouldnt let her go.. Her two sons.. my dad and my uncle.. couldnt cope.  My mom and my aunt..still had younger kids and jobs.. and so did I..
But I did it.. and I guilted my sister into helping me.  I had to guilt her because she doesnt deal with with things like that.
My kids were 5 and 6. I worked and still took care of her rarely seeing my kids.  I got to the point where I was going to implode.
Thats why I enlisted my sis (Dad and Uncle were going thru their own mental pity and there was no time for that!)..

So finally my sis and I set up a schedule so we could both be with our families and still take care of grandma. 

Possibly.. there is a brother or sister of his.. a cousin.. anyone in your family.. that could possiibly at the very least give you off a nite or two a week..
You need this.. if you don't take care of you, you won't be able to take care of him.. at some point.. something will give in some way.

Just offering you a possibility.. someone you trust to assist you.

hugs... mysty

[The Wife]

It is important to take care of yourself, however, I know we can't just stop caring, especially when there's no one else around to do the job.  I don't know if this is your case or not, but if it is, you have to find something that regenerates you.  Sometimes its as simple as a short walk around the block to admire flowers or trees with falling leaves. 

Hugs...

[okarol]

For me it's been hard because I want to cure a disease that is incurable. And it's happening to someone I love dearly.

You need your own time so you aren't consumed by being a caregiver. If you figure out how to do that please let me know!

Jenna is stable now, since her transplant. Now I can take a look at myself and see that I am so far behind in many areas of my life, my office was unorganized (I got rid of lots stuff now) - I was out of shape (I started exercising and watching my food) - my closet is full of clothes I never wear (I am tackling that next) - my house was looking worn and tired (I spackled and painted my livingroom and foyer this week!) and my garden looks abandoned (another project I am ready to begin.) This is all after nearly 7 years of stress since Jenna's diagnosis, beginning dialysis, getting a transplant and one year of follow-up. 

There were some very lonely times and I made some mistakes. I did what I could to cope. I don't know how I could have done differently, because I just did what felt right at the time. I have some very dear girlfriends that got me out of the house. Thank God for them, and for my kids, who kept me busy enough that I couldn't get caught up in the fear that lies under the surface when someone you love is ill.

I guess I just want to say that I know you will be okay. Do what you need to do, and try to find as much joy in your life as you can.
 

[willieandwinnie]

Annabanana, I right there with you. It's been over 7 years for me and it's not getting any easier. I'm scared to death to go very far and most of my friends have given up up me. They call occasionally, to see how things are going, but no girls day out, shopping, lunches, or getting nails done. I just want to spend every minute with Len, because I never know if it will be the last. Just know that we as a group will always be here for you. Day or night, just a keyboard away. I'll be thinking of you.

[annabanana]

There is no one but me to help Randy because he is very private...also such a "real man" kinda guy that he denies needing help, etc. His sister would instantly help, but he doesn't like the idea at all. I know when things get worse, she will be a big help to me, though.

There are 2 things I've been doing lately. One is walking. A friend and I walk for 30 min. almost every day. It's wonderful. But I rush home. 
The other thing I do is go out on "Girls Night Out" twice a month. Sometimes I feel just as strongly about this as I do about being with Randy!
It's a time of "forgetting"...if that's possible. Then, of course, I feel bad for not being with Randy.   

I've only been going through this for a very short while compared to some of you. You are all amazing, and I thank you so very much for all your good words.
A.

[mysty]

Don't think of it as forgetting.. think of it as re-energizing...it improves your emational basis... and your thought patterns..how you see things.. sometimes... you have to step back and take a breath.. then continue..
and you'll always get a hug from me when ever you want or need.. or.. just because..

[annabanana]

that's good, mysty...re-energizing. That IS a lot better and more positive than "forgetting".

[The Wife]

My spouse started dialysis in October 06 but was quite ill with Hep C since April 05 and I am his only caregiver.  (He doesn't want anyone else either.)  Anyway, through all of this, I've learned the importance of taking care of myself.  I also like to walk and sometimes I just walk around in the grocery store reading labels.  Believe it or not, I like doing that.  Another thing that has really helped has been my community center.  One of the things I do that brings me a lot of joy is volunteer with children under the age of four by singing songs once a week for half an hour.  These kids always lift my spirits and I just love being a kid around them.  We also play ring a round a rosie and all fall down.  (I also have a sixteen- month old grandson who completely takes me out of the worry mode and gets me to laugh and play.)  Since the community center is aware of what is going on in my life, they are very supportive, and if I can't make it, they understand.  I also come here.

[annabanana]

I have a grandson. too, who just turned 4 yrs old. He is a real joy.
I laughed when you wrote about reading labels in the grocery store. Yes, i do that, too, a LOT.
It is a great thing just to be able to GO to the store!
Yes, this site has become a life-line for me. Tonight I told a friend, "They really really understand!"

[The Wife]

Reading labels is a great past time, especially when the grocery store is just across the street.  And having the ability to just go the store is something I no longer take for granted.  Having a spouse who is ill has brought me to a place of gratitude for so many things, the biggest one of all, life.

It is great to have others who truly understand what this is like, isn't it?  Not only do others understand, they bring information that has helped in so many ways. 

And grandsons, oh what energy and joy they bring!  My grandson is the one who inspired me into playing music with other kids and I'm glad he did.

That's what I love about this site.  We can talk about our worries, the medical stuff, our emotions in regards to being caregivers, and our joys.  We can share our lives freely here and I for one, am so grateful.

Hugs to everyone on IHD.  You're the best!

[petey]

annabanana --
I know exactly how you feel.  My Marvin has been battling ESRD and dialysis for 13 years.  While we were always a "close" couple before he got sick, I have now become consumed and obsessed with him, his life, his care, his treatments, his meds, his doctors' appointments, etc. etc. etc.  He is literally my entire life.

I know I need some "me" time so I won't burn out, but I haven't figured out yet how to do that.  (The first one to figure this out, please let me know!)  The only time I'm away from Marvin is when I absolutely, no-other-choice have to be.  And, I want to be with him every second of every minute of every hour of every day.  If I'm away from him, I worry that he might need me.

I have found that IHD gives me an outlet, but yet I'm still right here with Marvin.  It has been so good to come here and "talk" to people who know exactly what you're talking about and exactly what you're feeling.

I agree with willieandwinnie -- it's not getting any easier for me, either.

And, I agree with okarol -- Just do what you need to do and find as much joy as you can in your life.

I think that we caregivers have a very important and rewarding "job."  We are helping another human being on this difficult path they're on, and we are helping make their lives better, easier, happier.  Even though I hover over Marvin (dare I say "smother"?), I wouldn't want to be anywhere else doing anything else with anyone else.

[mysty]

Although I would love to be with him that often... I have to work.. got another 7 more years to retire..
Dont see a way around it.. and I really don't have much of a choice..

[annabanana]

yes, petey...I know how you feel. I would not want to be anywhere else either. There are many times that I look at my husband in total AWE because of the way he handles his life now. If it were me, I really don't know if I would be as elegant and strong. He does get depressed at times (and sometimes fights me about the diet restrictions!) but mostly he is this Big Giant Beautiful Person facing something so unexpected, with such tremendous grace.

I feel honored to have this important and rewarding job.

IHD is a fantastic outlet!
And I want to say many many gold stars to you for 13 years of caregiving! wow!  

[petey]

If it were me, I really don't know if I would be as elegant and strong.   

annabanana -- I have said many times that if I had been the one struck with ESRD, I would have given up a long, long time ago.  My Marvin just keeps going, and I have to go along with him!

[annabanana]

petey, I hope Randy keeps going as long as your Marvin!

mysty, I know...it's so hard to be at work and wonder how he's doing.
We're self-employed so it's a little easier, but we still have to work.
We talk on the phone a LOT when at work!