Dr one of the regular posters here sent me this email yesterday:
"Please send prayers and good thoughts to my s-i-l's mom and my brother and s-i-l. Rosie had some problems and Alice went to PA last week to be with her for her colonoscopy. They found what my brother will only refer to as "problems," including a polyp too large to be removed, but apparently what they did remove raised concerns. She has clearance from her pulminary and cardio specs, but the plan is to do surgery the end of this week and decide where to go from there. Until she had a nasty bout of flu and infection that landed her in the hospital about a year ago, Rosie has enjoyed excellent health (she's 88), so this is all a bit of a jolt for everyone involved. You're a powerful bunch and Lake knows I'm asking my prayer chains to keep them in their thougts and is so grateful. I'll keep you posted as I learn more. Right now, it's a waiting game."
DR certainly has mine. The power is with us to help her. Please send out all your prayers, good thoughts, good vibes in DR's relatives directions!
Now today's post. Do you ever feel like you are running in neurtal? That you are stuck on the treadmill at the same speed and can't get off? Today really should be called "Bill is going to bitch again day." I was hoping that after April 15 that I would be able to get a little bit of rest. It just wasn't in the cards. The caregiver is sick again. She is sick so often that I offered to pay for a physical for her. She refused. Of course caregiver being sick translates into bill stopping his life, canceling any plans he might have had, and putting everything in his life on hold. Lately I have been feeling both underappreciated and frustrated. I know mom appreciates me being there for her and enjoys the time I spend at her house but I don't think she really respects my schedule. When I try to talk to her about it she changes the subject. I don't think once in the eight or nine years that I have been caregiving that Mom has ever called and said "Susan is sick and won't be here tomorrow. Can you be here that night?" Instead she just assumes I will be there even though often I don't find out that I am supposed to be there until minutes or hours before I am to be there. I tried asking her has she ever given any consideration to what would happen if she couldn't get a hold me at the last minute. The question is either ignored, the subject is changed, or I get "I'd just stay alone." Yeah, right, and someday I'm going to wake up and look like Robert Redford. I also don't think once in the eight or nine years that I have been a caregiver that mom has ever called and said "Susan isn't feeling well, do you have any plans for tonight, tomorrow or whenever." She just assumes that I either don't have plans or will change the plans on a moment's notice. Again when I try to explain to her how that makes me feel, the conversation is ignored, the subject is changed, or I get "you won't be happy until I have someone here seven days a week." Guilt squared. I truly believe that my feelings and my schedule aren't all that important to Mom. As long as she is taken care of that is all that matters to her. It really makes me want to be rebellious, take off on a trip, or put her in a position that if she trys to get a hold of me at the last minute that she will have to really give some thought to me not always being there to bail her out.
This brings me to a oonversation that I had with a friend yesterday. She said that maybe I was playing the role of a victim. That I had it in my power to change things. She may be right. But I don't see it. I see any solution as one that hurts someone I love.
In your caregiving duties do you ever feel like you are stuck in neutral? Do you ever think you are playing the role of a victim? If you are not a caregiver do you ever think you are stuck in neutral? Where you would like to move ahead with your life but there are no left or or right turn signs in front of you and there is that big red stop sign in front of you?
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10 comments:
First off to Ladydr, My thoughts & prayers are certainly with you and your family.
Now to Bill and your "bitch" day. After reading this "Yeah, right, and someday I'm going to wake up and look like Robert Redford." I see you still have your sense of humor and therefore assume you will continue doing as you have done before. Just like most of us here.
(I loved that by the way.)
Now I have to wonder...are you sure the caregiver is really sick? Or taking a bit advantage by taking the time off for herself? (Since declining the offer for a physical.)
So maybe is there a possibility of finding someone new and more reliable?
As for these 2 questions....."In your caregiving duties do you ever feel like you are stuck in neutral? Do you ever think you are playing the role of a victim?"
For me the answers are Yes and YES! I think with the time you have put into it, it is just a given to feel both.
I agree with you on the solution part...I have been told that all too often too, and by some who are caregivers as well as those who are not, I also know I have an option but know all too well who it will hurt.
Oh well, its a dirty job you know...but someone has to do it....might as well be us!
:)
DR, you know your family has all the white light and good vibes I can muster.
Bill, I can answer your questions as Dona did: YES and YES! I know I've kind of made my own bed and that I could slack off on some things without any repercussions besides feeling guilty. But so far I don't change anything, and can't blame anyone but myself.
I feel totally stuck in neutral. Even more, I feel semi-immobilized. I don't take the time that's available to me to do things that need doing for myself. I watch the days go by, so fast, and suddenly another week is gone and I haven't accomplished anything. I see my life floating by in a sea of, if not nothingness, at least not-muchness, and I feel powerless to change anything.
While I'm not under the same pressures you are, Bill, I sure understand your feelings. I think we've talked before about how inner-directed people seem to be when they reach an age of helplessness. Are some still teachable that you can't drop everything at a moment's notice? I don't know, but I think in your case it's worth a try.
I'm also suspicious that the caregiver just wants time off. Would you be better off cutting her to half-time and hiring another one half-time? They might both appreciate having a job at all, and might even be competitive as to who's the more valuable. Just a thought.
Hi Dona
Can't lose your humor, if you lose that you lose everthing.
Yes, the caregiver is really sick. She just doesn't take care of herself. She also is kind of a religious freak where she has to save everyone. So when she is not at mom's she is up all hours of the night bailing people out of jams. She just doesn't take very good care of herself.
Trying to find a reliable caregiver is really difficult. The pool is really filled with a unique personalities and often people who aren't that responsible. Boy could I tell stories about the caregivers we have had for dad and mom. And I am going to start looking for new ones without mom knowing it.
I'm glad I'm not alone in my feelings. I'm glad we have each other.
Bill
Bill, thank you for posting the prayer request. I left out two important words -- they have TO GET clearance from the docs, before proceding with the surgery. Thanks to Pat and Dona for the prayers and to those who haven't yet responded. As always, it's the waiting and not knowing that are hardest.
Now, as to your post. I'm so glad to see a healthy vent and the questions you raised. Like the others, my answers are yes and yes and it's almost like it starts simply, you taking care of one issue, and suddenly your life is no longer your own.
Yes, I'm stuck in neutral. For five years, except the few weeks Mom's in AZ, any plans are tentative. "Yes, I'd like to do that, unless..." So, you kind of stop making plans, because a single doctor's visit may lead to several weeks of some sort of medical treatment, regarding going someplace. Or a problem crops up and daily visiting and/or monitoring are required. And while Mom does express appreciation, it doesn't change the demands or the expectations that whatever comes up, I'll handle it. Now.
Yes I sometimes feel like a victim and, yes, I realize that this is my perspective and mindset, but it's very hard to not feel that way, when you feel your life isn't your own. I've been working on that for the past many months. Some days I make progress, some days not. Put the two together and, as Pat says, you end up not doing things for yourself, because you put Mom first and are afraid to plan in advance. And that puts you in a rut (or it puts me in a rut, at least). I do my editorial work, I do my domestic stuff (more or less), I take care of Mom and her domestic stuff and errands and such. The only thing I insist on is trying to get in my exercise in the pool or line dance five days a week, which is critical to my mental/emotional wellbeing. It doesn't always happen, but often enough. However, why do I not play the guitar, get out pen and ink or paints, dig in the garden more often? The same reason you guys aren't doing similar things for yourselves, I suspect. You're tired! Even if you're not physically there, you're either listening to complaints or concerns via telephone or you're wondering if all is well when you're away. In your case, it's become a case of always wondering if the caregiver is going to show up or you're going to be on last-minute call.
I agree with Pat that our parents are pretty much self-directed, maybe self-centered, and when they need someone or something, they want it now. We've allowed them to become dependent, they need to be independent, but they resent being independent, so their attitude often leaves something to be desired. In addition, they have no jobs, outside interests, places to go (except doctors and whatever excursions we may take them on), so I rationalize they don't realize we have lives beyond their needs. And discussions that interfere with that, they don't want to hear. When parents are adept at using guilt, which has been a long established pattern, we do become victims, to some degree, at least. I've heard the same things about the "victim" status you have. Years ago, when my sisters adopted this status, due to different circumstances in their lives, I vowed I'd not do that. So I guess I'd have to say I don't have to be a victim, but I feel like one because, like you, I've not found changes I can make that won't hurt someone.
I dunno. Maybe we should have an assignment this week: In your weekend report, come up with one thing, however small, you can do to change your status and to do something that's outside the neutral gear?
As to the caregiver, I'm with Dona and Pat. It seems to me she's missing a lot of work over the last few months. I know finding a good home caregiver is an absolute nightmare (heck, we couldn't even find a reliable home health service to come in twice a month!), but Pat's suggestion about two caregivers might work (although you had a problem with that earlier, didn't you?) How I wish things had worked out for your mom at the assisted living facility or with your sister and b-i-l moving up.
Obviosuly, I have no answers, but a lot of empathy. Mom's due back on Friday and I'm already trying to set up doc app'ts and this week will be cleaning the apt and finishing the laundry (started) and making up beds and putting back the stuff I removed for the extermination and we should be off and running early, since she has a doctor's app't Monday and needs to see a dermo and has other app'ts already scheduled and there's her birthday and the reception to deal with. And then there's the move issue -- if it's going to happen. Uh, I may be next up on the bitch list!
Hi Pat
Well, I'm glad that I am not the only one with the feelings. It always amazes when I post something about how I am feeling I worry about be judged instead I get a lot of caring folks that understand. The support is great.
I actually feel semi-immobilized too. I never thought about until you mentioned it but it is a great way to describe my feelings.
I really would like a caregiver. But two problems finding caregivers is the type of person available and how hard mom is to please.
Bill
Hi Dr
I will post prayer and good thoughts request anytime for anyone!
So that makes the whole group stuck in neurtral!
I think it is normal for caregivers to make progress some days and I think it is normal for us to regress some days.
I think there is no doubt that the parents become selfish as they get older. I also think they become blind to how their actions effect everyone around them.
I like the idea of an assignment of coming up with one small thing we can do to change our status and I will incorporate that into the Update Day message.
Your mom is coming back Friday? Did they find out what was causing the sinus infection?
And I want to hear all about the birthday celebration!
Bill
Yup, Mom's due in Friday. Decided she preferred to keep her app't with the MD specialist here on Monday, rather than see the guy in AZ again. Deb's driving her back, then turning around and returning to AZ on Sunday. So, it's put the apartment back together (remember the exterminator fiasco?), make up the spare room bed and do a bit of cleaning. Laundry I finished last night, except for ironing.
They cleared up the sinus infection and it appears they've pretty much cleared out the sinus cavities, thank goodness. Sinus doc says she really needs to see an allergist. Deb wasn't able to find one, so that's on my list. I'm calling daily for a cancellation slot with my dermo, as Mom's had a horribly itchy rash for almost three weeks and they've not been able to do anything with OTC salves or sprays. Gotta call Comm on Blind and make arrangements for them to deliver all the magnifying equipment and such next week. Ahyup, looks like we're up and running and back to normal around here (wry s).
Hi Dr
Interesting decision on your Mom's part about wanting to see the old doctor. I can't help but wonder if that isn't an excuse to come home because she misses you and her surroundings.
I'm glad they got the sinus infection cleared up. Looking for an allergist sounds like good advise.
Looks like your schedule is going to be as bad as mine was!
Bill
Yup, scheduling is likely to get back to a little crazy, I suppose. Still, I was prepared for this and tried to schedule other things accordingly. Yes, interesting she wants to see the retina specialist here, since she's going to be dealing with the one in AZ in the future. As to getting back to "home" and me, I don't think she's ever considered SC really home. I do think, now she's made the decision to move, she wants to come home and get that all in motion and done with, but I could be wrong.
I did get a lead on an allergist, but I'm still not sure it's good to start with one here, then have to find another one out in Phoenix. I'll call the guy Marilyn recommended and see if I can get some idea of what the testing and monitoring involve. Let's see... that gives us two app'ts with Renfro, one with the internist (after blood tests), the dentist, the podiatrist, the dermatologist, maybe the allergist, while getting her ready to move, doing the reception, celebrating Mom's Day and her birthday. And I now discover Deb mentioned to Tim (her neighbor) Mom might be moving in with one of us at some point, so I'm being questioned as to whether Mom's returning "for good" or just to pack up and lying through my teeth about not knowing. I do hope God understands about fibs for good reason, as I seem to do a lot of that lately, including pretending to be her to get certain things accomplished, like the recert and getting cable back up and running and such (wry s).
Hi DR
If your mom never really considered SC home then the adjustment to Arizona should be easier for her.
Yea for the lead on an allergist.
To bad you aren't going to be busy the next few weeks!
Gosh I hope your mom decides not to move in with you but if she does that may make it easier on you in some ways if she decides to stay there.
Bill
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