Caregivers Sharing thread # 14

Marie,

  Thanks for the comforting words. Week didn't get better.  Two of my horses coliced and one died from it.  Broke my heart. I've been really sick with a nasty cold and flu and we have wind of 40-60 mph.  Aaagh. 

  I wish wish wish I was more empathetic to my hubby.  He is trying so hard to help around the place, but I see my horses don't get the care and attention because I am busy taking care of him and I'm angry (at myself I guess) that I can't do a better job at everything.  Feels like I'm not doing anything well, just struggling to get the very basic things done. (Food bought, untilities on, clean up, meds, Dr. appt and do it all again.)

   I wish I wasn't so critical of what he does help with, but lots of times it doesn't seem to make sense and makes a lot more work for me. Wish I could see things from your perspective and feel like I want to do all these things, instead of them being just a crushing chore.

  Reread this and I do sound like a whiner tonight..I guess all the emotions just won't quell.  Hurt, anger, pain, loneliness, crushing amount of work.  My husband seems to be handling this much better than me at this point.  I need to do something to help me be a better caregiver.

  Thinking of you and hope you are finding comfort.

Angie1953 

Angie,

I feel so bad for you.

He is suffering from a terminal illness, declining a bit each day. Though it seems he has some good days and weeks just now. Which is tough for him...though I am not quiet sure how introspective he may be about that just now.

Mike was so unreasonble and unpleasant during his decline, but after transplant, he isn't sorry he was mean. He doesn't remember it like that. He remembers that he was sick and not much else...detail wise.

I think what you need to do, in addition to following Connie's advice about letting some things go, is to try to find some way NOT to be reacting to him...because you are reacting to AIR. He doesn't know he is upsetting you, likely doesn't care, but certainly isn't annoying you on purpose.

I went to the doc and got some meds for ME when it got too much...I call them my "Don't BITE Mike pills." They call them anti anxiety meds...and I resent (a bit) that I'M the one taking the pills...as he gets to acting up, not me. But this is where it was. And actually is again to some degree.

Since transplant, he has been better, but if he's having a bad day or a bad week...he can be a real jerk.

One day he'll be all up and dressed and organizing the pills and emptying the dishwasher before breakfast and the next day he'll be wretching in the bathroom and going back to bed for the morning, even if we have to be somewhere...period, the mule is back!

The key is to take yourself mentally out of the equation. No one is doing anything TO you TO HURT you or be MEAN to you. A sick man lives at your house and sometimes he misbehaves.

If it gets to be too much, well, you can't have him home. But you are not going to change him by force of will...he is sick. If the property and animals are too much, well some decisions will hve to be made...what would you do if YOU were suddenly physically disabled...feed/water/brush/and exercise the horses on your wheelchair???

And I wish you both the best with this MESS. I'm sorry this is happening.

Hugs,

Carol

Angie, who will look after this crazy person while you are working? No telling what he might do on his own.

Hugs,
Connie

Angie,

I remember a day last summer, we had a really hot day, and I had left a tarp over the pen some of my chickens were in. Well, 100 degrees and no air circulation, I came home to 7 dead birds. I felt awful. Not only could I not take care of my husband very well, I killed my chickens though carelessness. Talk about feeling like a failure. I guess I could cry about the birds, because I knew I would be able to stop eventually. But I am still afraid to really cry about losing Craig, because I don't know if I will never be able to stop.

I think about you everyday, whether I post or not. I wish I could be some help to you. Good luck with your interview. I hope it is a great job and helps to distract you a little.

Hang in there,

Marie

Gosh, I really feel for you Angie, and all you other caretakers going through this. I can relate to everything that's been said lately. Especially when you said how you felt like you were just "waiting for him to die". That was very brave of you to verbalize that. I have felt like that at times, more so recently, and then felt so guilty for feeling that way. Most days I don't feel like I'm living my own life, but just going through the motions to maintain everyone else's comfort, and then there's nothing left for me. Seems like when I get one thing fixed, two more things break. My day today was this: work 8 hours; trip to car dealership so they can look at my broken hatch back and order parts; run to vet to pick up cat meds; run to pharmacy to pick up husbands meds; get home, picked up garbage left all over the kitchen by husband, listen to 15 voice mails on phone (mostly junk calls), discovered that new curtain rod had broken, tried to read a little on here, had to jump up when husband poured his own bowel of cereal for dinner and spilt milk all over the rug when walking back to the sofa. I'm amazed I got through writing this whole reply. Have to get off soon. Got more to do, have to pay some bills, give cat her meds, give hubby his meds, and prepare med doses for tomorrow. It's exhausting. I've been at this for almost four years and often wonder how long I can keep this up. Hardly get a good nights sleep. Husband wakes several times during the night, turns on lights, outages around and sometimes falls and then bleeds all over the place. Fun to clean up at 3 in the morning. And have to take special precautions because of the hep c. Sorry to spill all this out. It's just nice to have a place where everyone understands.

CreativeSoul,
Oh my gosh, I had to gasp when I read that you have been doing this for 4 years!! I can't imagine!! I have been at it for 20 months, and I am toasted. I have been lucky that up until now my Mom has helped me out financially, so that I was able to work only part time. But she has helped all she can afford to, so back to work full time.

I know what you mean about not being able to live your own life. I was a very independent happy person with an interesting life and I had in mind a wonderful retirement working with horses and showing riding horses, but I am virtually someone else's handmaiden, leaving absolutely no time or life for myself. I am horrified that this has become my life.

CreativeSoul, I feel like all the goodness has been rung out of me, and my life is about food, medicine, blood, crap and trash. I used to be able to emotionally help lift up my family members and friends, and now I need to stay away from them, as they are tired of hearing about what my life has become. (I don't blame them.)

Thanks for sharing your day. As I read it, I swore that I had written it in the middle of the night. My husband roams the house at night, leaves all the lights on, lets the rooster out, lets the dog out and wanders out to the horses. He hasn't turned them loose yet, but I won't be surprised.

The latest surprise for me, was when he got up in the middle of the night, dipped the drain cleaner out of the sink and put it in a bucket with a small hole in the bottom and then walked the bucket all around the carpet. So now, my carpet has streamers of drain cleaner stain all over it (like a Jack Pollack painting). Yesterday I smelled this horrible stink in my coffee cabinet and upon getting on a chair and searching for the stink, I find hubby has "stored" a plastic baggie of ham up there. It had to be a couple of weeks old as it had liquified and even though it was in a plastic bag, stunk to high heaven.

I really do wish this was all over and he could move on to whatever is in store for him for the next life. We have talked it over and we are both ready for this to end. He wants to travel and can't, wants to hang out with his buddies and can't (they are all traveling, working etc) and his daughters are struggling with their own illnesses (cancer). I do have to be careful in the community, as I don't hesitate to say we are ready for him to go. And lots of people really don't understand that. And yes, there are days that I feel really guilty feeling that way. We both feel we are at the end of our story together.....and the last two pages of the book are stuck together and we are struggling to finish the book with less pain and a little more dignity.
Angie1953

PS: Connie: Woman, I don't know how you do all this yourself without a caregiver. I think of you often. You must be one of the toughest women on the planet. Thanks for all your help and guidence for those of us caregiving and those ill.

Don't feel bad about burning out as a caregiver. My domestic partner of 15 years asked me to move out of our home when I began to get sick. At least you've stuck around. My dp said she didn't want to be a nurse, and I didn't need her to be. I went through 3 years of ESLD and a transplant with minimal help, other than my mother helping me out for 10 days after I was released from MGH after the transplant. I came home 3 weeks after the transplant and did what I had to do to survive. Friends helped by driving me to the docs and grocery store for a month, but after that, I drove myself. Again, don't feel you're letting your partner down, some of us got zero from ours.

I, like David, had minimal help. I did get some post-transplant transportation to Mayo from neighbors. Yesterday, one of them went to the biopsy with me. They required someone to be with me. She doesn't drive and neither do I, so we took a cab there and back. I have someone taking me to the store or she will take my list and shop for me--for a price. It costs me $50 a mo. or so, but well worth it. I also have a cleaning lady come once a month to thoroughly clean the bathroom and vacuum the wall-to-wall carpeting--also for a price, of course.

I think I've been able to handle everything on my own is because I've always had to. Even during my 2 marriages, I didn't get help beyond the minimum. Since I've never had anyone I could count on, it's been a necessity to do it myself.

David and I are both Aries--a very strong sign. We are action oriented.

Hugs,
Connie

Pam, Hospice also provides respite care. It wouldn't be for a solid month, but you could ask for this in order to go to a movie or visit friends, or whatever will take you out of the house.

Hugs,
Connie

Hello my Dear Friends!! I stop in frequently to read posts and check up on everyone!! I just wanted to give an update on my brother LJ.Still drinking with any dollar he can get.Still homeless living with his so called friends.I have full custody of his son now.He just took the easy way out and handed it over in court.It was best in the long run but I know he didn't want to follow orders the court would have handed him.Sad.No hospital stays lately but I know eventually there will be again.I don't carry guilt any longer of not doing enough to help him.I still try and I offer him help when I can see him.I wonder if he dreads seeing me come.I take him food items on occasion.Share my smokes but I will not give him money.He asks but always the same reply"I don't have any to give you".His belly is tight swollen ,he lost a front lower tooth,and he looks like hell.Intoxicated is the only way I have found him lately.Sleeping and having to be awakened when I get to where he is.Shakey even with his alcohol.I really dread the day I see yellow.His eyes are to an extent but he carries a gray look and an alcohol smell about him.Al-anon has helped but the meetings are few and far between close by.I found a noon group on Mondays and have attended often.There is no one there dealing with endstage but we all share in the chaos our loved one has brought about.As a sister I still worry and dread the end result of his decision but I,although hard to accept,leave the decisions to him.Help or homeless.I grieve daily as if he was already gone but I know it will worsen in the end.I keep busy so as not to have to much free mind time.This helps alot.I am tired at bedtime and fall off to sleep before I finish my prayer many times.I was on an unstable highs and lows for a while but knew if I didn't get a grip it would make me sick and I wouldn't be able to take care of my nephew.So I took to painting the house and got some work painting for a neighbor and have leveled back out Thankfully.I never know what each day will bring for my brother but I know I am not in charge and as hard as it is at times I still have a life that I must focus on for the sake of myself and others.Sending Love and Prayers to all of you!!!

AM, sorry your brother continues on his destructive path. To answer your question, yes, he probably does dread seeing you--out of embarrassment and not wanting to be lectured (as he perceives it.) When I was into heavy drugs, I had no contact with my family for 18 mos. The same when my alcoholism was at its worse.

I'm very glad to hear that you are taking care of yourself and are now on an even keel. As we say in AA, "Detach with love."

As Carol said, your nephew is at high risk of also becoming alcoholic. When he reaches his teens, you will probably see more than normal acting out. He likely has a ton of feelings regarding all this, but may not be able to verbalize them until much later. But his actions will be saying it for him. The very best thing you can do is to give him a feeling of security and a sense of how much you care. I'm saying all this from personal experience. My mother was an alcoholic and I was shuffled around as a child, back and forth to my grandmother (a good woman, but never showed emotion.) I never knew when the rug would be pulled out from under me and I'd be moving again.

Bless you for being a loving aunt. I had one of those myself, who was my saving grace.

Hugs,
Connie

I have not gotten him involved yet with Al-ateen.But I did change his counseling to after school,once a week at another other than school base therapy.This is consistent and he needs this now.I will use any and all benefits he has through his insurance.He and I grow closer as time goes by.It is my goal to let him see that alcohol does not have to be a part of his life.Only 8,he has seen too much and had such heart break.We hug each other more.This is something he has been doing more recently.He didn't in the beginning.I take him to see his Mom when he asks because if it were left up to me he wouldn't see her often enough.He gets depressed and acts out after a visit with either of them.Hopefully his new counseling will help him to release his hurt and frustration in other forms as time goes by.
I hated drinkers growing up because of my Mom and her brothers drank all the time and too much.I swore I would never drink because of my Mom being drunk when I needed her most. I became an alcoholic in my late 30's.Maybe I always was,just didn't participate early on.I will always be an alcoholic but I don't have to be an active one!!And I don't want the same for my nephew.To see or to be influenced in this manner.I am trying to enstill good things to out weigh the hardship he has been through.As I have said I don't know how to be a mother but I can be a good Aunt and role model!!It may be a long learning process but one that will pay off in the end.Love and Prayers!!

I suppose that even for those of us caregivers dealing with End Stage Liver Failure, the 3 c's still apply. I did not cause this, I cannot control this and I can't cure it. I will try to remember this. I often rail against this disease and want to CURE it...or CONTROL it, etc.

Can one detach with love...even if the ill one is not dealing with addiction issues? Perhaps this would be helpful to me, as I have been so angry and distraught lately. Makes life more miserable for both of us.
Angie1953