Y’all! I am SO tired. I hate to write this and I may not even post it, but I’ve got to express it somehow. They say, “writing crystallizes thought.” Maybe in getting this onto cyber-paper I’ll discover an answer which I haven’t yet considered.

I know I need a break. I’m teary from the time I awaken in the morning until I tuck Mom back into bed at night. You might think I’d be relieved then, but instead, I tiptoe around and shush people until I go to sleep because I’m so afraid that she might wake up again. “Afraid”…that really is just about what it is.

I feel so sorry for Mom because she is so anxious. She needs my attention constantly. If she can’t see me and she hasn’t gotten me running in three directions at once—she’s not happy. Well, she’s not happy anyway, but at least this way she knows I’m around and it seems to be the only way she knows how to cope.

…and I’m not kidding you about it being constant either. She is often calling my name for the fifth time, almost like a chant, while I have yet to get three steps away from her in attending to her last request. I have even begun to hear her call my name when I am in the grocery store!

If I need to talk on the phone, I have to hide-out in the garage or the bathroom. Then, when I come back into the house poor Mom is often frantic, and I feel SO guilty.

Most days, and for long periods of time, I sort of imagined myself as doing a “survival float” (any other old lifeguards out there?). …just sort of bobbing along, trying to conserve energy, biding my time until the Coast Guard arrives…or until I unwittingly am carried by some current (time?) into sight of land. …I didn’t need to see the light at the end of the tunnel; I only needed to know that I could hang on. But now I don’t feel like I can hang on much longer.

I just don’t know what to do. But I’m feeling more and more certain that I cannot continue like this. I feel depressed. I feel my health is failing. There is no sense of joy.

My immediate support circle are my husband and children. Unfortunately, my husband is out of town on business at least half of the time, and my older children have moved away and are (rightly so) getting on with their young lives. My younger ones need more attention than I have time and energy to give them (and they are not demanding).

I feel isolated; maybe even imprisoned. I have even started taking milk delivery because it is so difficult to get away! On the rare occasion when my hubby is home and I can run out to do errands, there is still no relief. I somehow feel something is broken inside. I cannot relax. I feel I have to rush to get back home—everything is a rush. Urgent. I live in urgent mode.

Now, I think it all seems very unfair of me to be saying all of this stuff, because we have had good periods. And we have had periods when bobbing along was “good enough”. And I don’t think it’s unreasonable to expect that things will get better again, in time. “So why all the whining and complaining?” I ask myself. I don’t know. It just doesn’t feel like it will ever end, I guess. I’m just so tired.

Being concerned about being unable to continue caring for her for some reason is why I've tried to put it all in writing and have someone extra that we don't really need who knows her.
I don't want her to suffer anymore than she had to if For some reason I haad to leave the scene, and want my Bro to have a starting point for continuingher care, if he has to become Team Captain, someday.

I am not by nature an organized person, or a captain type person. For me, that is the hardest part., being something I'm not.
You really need some sort of help, hope you find someone soon. Good luck.

Bobcat, you always have something helpful to say!

I love the "Team Momma" concept. That's what I need! ...you are so organized and seem to have every angle covered. I'm truly impressed by how you have put such a well oiled machine together!

Thanks for going into detail about how you introduced your mom to the various caregivers. This is much what I had imagined I would do, but you really fleshed it out for me. With any luck, one day soon I'll be able to put it into practice. I really am hoping, though, that we will have the great grace of needing only one or two of the same folks helping out. The last thing my mom needs is a parade of new folks waltzing in and out of her life! ...in fact, that's probably about the last thing I need, as well!

BG, sounds like you and your hubby have a good relationship. There certainly seems to be a good sense of humor between you. Congrats!

...and you are right about my control issues. I'm a perfectionistic-control-freak to the bone! ...good suggestion on the hand-outs, too. If ever it comes to that, I will certainly remember that this is an option, and hopefully be ready.

The thing I'm trying hardest to come to terms with, and the thing I'm trying hardest to avoid, is the possibility that I may one day be incapacitated---then what!? So, I need to prepare for that now so that no one would be caught off balance. If I can get my ducks in a row, and take a load off once in a while; chances are better that I will stay well and it will remain a non-issue. (GO, me! ) ...right...well, wish me luck, anyway

Oh Baby dont worry about a thing this has been a busy week...heck a busy month.
Well on a good note hunny recognizes his shortcomings...could be from the little comment I made about me me me and if I dont get a break yelling is gonna be the least of his worries... There was a little joke about throwin me in the can if I smack him upside his head...funnier still was when I said Ok lemme give it a try
Believe me I get what you mean about the testing in my head when I sleep through a night that is a break to me, I just never think it may be different for others. Come to think about it when I get to drive my truck THATS a break for me
The how of it...well thats all about letting the balls fall cant keep them up in the air forever, every once in a while you have to say to yourself this is all Im capable of everything else will have to wait...I know sweetie tell that to us caregivers in the midst of all this, we do have a tendency to try and control every little aspect of care...
I remember a while back someone said they kept a printout of issues dealing with their LO when they put them in the hospital they would either hand them out to the personnel and/or clip it to their LO's clip board. (Kudos to them)

Lets hope your new agency find works well with you and Mom. You have a great weekend Maria see ya on the flip side

Mariabee, I've been following this thread, but haven't spoken up, as I really didn't know anything helpful to say ( never stopped me before, so why this time?) I think I just respect you all so much.

I fully understand how having Mom out of the home and the work of arranging for a break can be more exhausting than just sticking to routine. With each of the CG's that now are on "Team Momma", I stayed with them the first day, introduced them to Mom as my new friend who heard so many good things about her that they wanted to spend time with her too. I make sure they know where all the phone #s are, all the supplies, see how they handle things, gradually back off, leaving them with a photo album to go over with Mom , or helping her go over the daily paper, while I tell Mom the bird feeder needs filling, or whatever, and if all is going well, tell her I need to run to the store, real quick but "Mary" will be there if she needs anything and has my cell phone number, I may or may not actually leave the house, but I do leave them alone for at least a half hour, and come back asking if you girls had a good time while I was gone. Then while Mom naps, I give the CG a chance to ask more Qs about anything Mom said or did. Before they even meet Mom, they have been filled in about her arthritis, hearing and vision problems, Memory slips, etc., then if they can handle that, they meet her. Read the CG notebook I have made, including now, the print outs on preventing falls, what to do in case of a fall, the daily routine, her favorite foods and recipes, her medicine schedule, and the shopping lists of must haves, and where they come from. Another copy of all phone #s.

None of these people currently work for agencies, but all have experience of some sort. 2 of us are full time, 3 are part time, but will fill in for others in a pinch. 3 of us are well past 50 and 2 are younger. Mom is still in her own home. She is able to understand that she needs help 24/7, but I have my own home too. That is a big plus, that not everyone has. But she knows she has to accept these new "friends" of mine to stay there. I believe that that approach can work in the home of the primary CG as well, but maybe not. These ladies on the team understand the agitation a client may experience, I show them ways to refocus her, reassure her. But I'm still on call 24/7, even if H and I go out of town for a few days.I never feel like I am off duty.

Hey there, BG
I'm sorry it has taken me a while to get back to you. I've been sort of out-of-pocket with family stuff for the past couple of days.

I guess you may have misunderstood my question about inpatient testing. I realize that it is a doable thing, it's just that it doesn't sound like a "break" to me. I couldn't leave my mom in the hospital and relax. I'd have to get the staff all on the same page about her conditions, etc.(2-3 days). I'd want to be there when the doc is visiting in order to communicate with him. While I would be at the hospital I'd be wondering how soon I could get back home to see about my little people. And in between, I would be spending a lot of precious time on the road running back and forth. Anyway, that's what I meant by the HOW!? part.

Now, you have another thing altogether going on over there. I really imagine that if I were taking care of my mother-in-law, as opposed to my mother, that I would expect my hubby to be slightly more of a team player. I think you have every reason to make sure that he understands you need support---on multiple levels. And if my hubby and I could not come to a comfortable, loving, working relationship...well, I think I'd have to ask him to decide which alternative mode of care he'd like to pursue...and then tell HIM to GO for it!

My husband is gone a tremendous amount of time because of his work. I understand that. Sometimes I even need a couple of days of that kind of distance. Also, when he is not working he sometimes spends a good bit of time riding his motorcycle. But I figure that everyone needs a break to do things they enjoy. Just because I can't go with him, is no reason for me to resent the fact that he's enjoying something that he really loves and that he may not be able to do later in his life.

Now, a "vacation," at least as I use the word, is a whole'nuther ball o' wax. If my husband went on vacations without me, content in the knowledge that I'd be holding down the fort and his mother to-boot(!)...well, I'd say that would be grounds for resentment in this humble abode!

I understand your frustrations and teariness on all the other accounts. I certainly HAVE thought of installing a punching bag in the garage---if my shoulder joints weren't so flakey, I'd have had one installed and worn it out by now!

But it seems to me that you and hubby are really not at all on the same page at this point. It sounds like you are more frustrated and feeling let down by him than by any of the other stuff. Have you guys had a good talk lately? A sweet one? Telling him how much you need his strength and support. Have you told him how he is in a unique position to make a huge difference for you, his mom, and in the quality of your marital relationship?

In my experience guys really need to be needed---and they really like to FIX things. Maybe if you could outline for him some "Things that would make life easier" he'd jump at the chance to be the HERO and pick a couple things off the list to improve the situation. I know that my hubby likes to help--he often just doesn't know what to do.

On the other hand, I know that if I was simply complaining to my husband about how hard things are, or about how I don't know how I'm going to deal with such-and-such, he'd quickly want to disappear (vacate ). He hates to see me upset when he sees no solution in sight. If he can't FIX it he really doesn't want to hear much about it...ya know? (...anyway...that's my experience for whatever it might be worth.)

...on to the caregiver help.
On this point, I obviously have been completely unclear. Sorry. I mostly have found no professional help because the folks that I would have hired have prior commitments and are generally unable to help WHEN I need it (not to mention that they are horribly expensive).

When I've asked my mother's sisters if she might spend a day with them, they've said yes but flaked out at the last minute (that's worse than if they had told me, "H*ll No!")

So, when I'm in a pinch I'm down to asking the fiance of one of my middle sons to help out a little around the house when I'm here, or to watch mom if I need to run to the store---but she is rather immature. She really doesn't want to work (and I AM paying)--she'd really rather be playing with my youngsters or watching anime!

And of course, interviewing is another can of worms. How does one carve out the time and space to interview when Mom is physically attached to your elbow? I can't interview here because she'd want to know, "What's going on!?!?", and of course, she doesn't want anyone tending to her but me. And getting away to interview...well, there is that catch-22 again: How do I get away ?

On a brighter note, however, I recently have found an agency that I think I may be able to work with. They have offices all over the place, (85 offices in 17 states, Mexico, and South Korea!) and so far I'm impressed by what I've seen. Their website is GriswoldSpecialCare.com and their corporate number is (888) 777-7630.

I sure hope things improve soon, BG. I know it's hard, but we are all in this with you!

maria

This message has been edited. Last edited by: mariabee,

How do you get them the doctors to admit her for tests...Ask him, be honest just tell him you need a break they can arrange for this when its needed. Im about to take up my MIL's doctor on this very thing because if I dont get a break I will break.
The more I think about what has happened here in this last year and a half the more I get mad at my husbands *help* he has taken 2 yes 2 vacations as well as gone out to shows movies and such while I stay behind, whos fault is this, well its mine and I wont make an excuse for it but its time I stood up and got counted here I pretty much told him that this last Sunday to back off of the "me me me" routine if he didnt want to see me blow. I know its big I tear up just reading a simple line out of here...so not a good thing, tears and anger go hand in hand for me...why? I hate letting people see tears if they see the sadness they feel they have to touch me which in turn starts the waterworks I cant control. Hows that for unreasonable?
Whining? Naaaa its pressure release...
Im thinkin of installing a punching bag what you think?!

Maria what is wrong with some of these in home CG's you are interviewing? Maybe your being a little too hard here? Dont take it wrong but from what you are saying you are responding to mom when you shouldnt be you know what I mean? Reinforce that whatever she needs while you are at home will have to be dealt with by the CG and not you, only respond if its an emergency.
This is something Im trying to teach my husband right now otherwise MIL is calling out all day and night for him if he is here. Something she will not do with me simply because I have put my foot down on this.

Thank you, Maria! I feel much better now too!
Maybe it was good to get those negative feelings out and start again on a new page so to speak!

Thanks so much, Mae. You are so sweet and so wise.

I'm doing so much better now. I guess I just had to admit to myself that things are rough lately. I generally do try to keep that "happy face" on all the time. I guess I figure that if I pretend happiness then I can make it so.

But every once in a while it all catches up with me, and when I crash---BOY oh BOY! I have a MAJOR crash! (as everyone has now witnessed )

Anyway, I think I'm back on track again, and I'll certainly try to be more realisitic from now on!

Hugs to everyone,
maria

The best thing you can do is share your feelings.Honest feelings that are not sugar coated.Honest feelings.We seem to feel we have to put on a good face all the time.Life is not always a good face.You have to remember you, me and others are humans with human emotions and limitations.,
These feelings have nothing to do with the person we are caring for.It has to do with the daily demands placed on everyone.I think we read so many storeis written bt folk who only write the heart warming story.Too me that has not always been fair because life in general is not always great .Then you add more stress and the body cannot deal with it witout a break or help.You who opened up to everyone have done others a great justice.If you read back post you will see that everyone who is honest has experienced what you are feeling.You loose control over life as you once knew it.No longer able to be spontaneous.Always rushing around like a chicken with their head cut off.The worst thing you can do is hold these feelings in.If anything sharing and having your feelings being acknowledged is a release.

Dear Maria,
Sending you blessings,hopes for better day tommorrow
and words once sent from a good friend of mine.

"It is not the critic that counts; not the man who points out how the strong man stumbles.
Or where the doer of deeds could have done better.
The credit belongs to the man who is actually in the arena,
whose face is marred by dust and sweat and blood;
who strives valiantly; who errs, and comes short again and again,
because there is not effort without error and shortcoming;
who knows the great enthusiasms, the great devotions;
who spends himself in a worthy cause;
who at best knows in the end the triumph of high achievement.
And at worst, if he fails, at least fails while daring greatly,
so that his place shall never be with those cold and timid souls
who know neither victory nor defeat."
--Paris, 1910--Roosevelt

Oh Dochka! You really know how I feel
You know, we actually have had many times already when Mom doesn't exactly "know" me or the children...but she must have me answering and tending to her--she always recognises my face and voice; although she sometimes has lapses placing the face and voice with my name (which, of course she will never forget ). ...well, that's crazy sounding isn't it!?

The thing that I now suspect might be our next surprise is something you mentioned though! My mother has always professed to knowing ZERO French. However, I know very well that she speaks and understands French beautifully. At the time she began her schooling, French was forbidden in the schools around here and the children who spoke French in this area were made to feel inferior (to say the very least). As a result of some of that, I was never taught the French language at home, as my parents figured they would save me some grief. ...but wouldn't that be the darnedest thing if my Mom suddenly starts spouting off French and nothing else!? I know for certain that it was my father's first language...it might well have been her's, too.

Before I sign off I must mention that I have always so much admired the Ukranian families I've known; especially for how they have cherished and maintained their beautiful cultural and religious traditions. I am so happy for you and your mom that you still have that great bond!

God bless you!
maria

Dear Mariabee, HAVE YOU BEEN READING MY MIND!

EVERYTHING you wrote fits my feelings and my life exactly. Worse yet, my mother doesn't speak English anymore, she can understand it a bit,so forget about respite care at this stage she's too aware that I'm not around. I was laughing at the shushing part when she's sleeping, noone "gets it" that I'm FREE then at least in the confines of my home/prison.
Thank you dearly for writing this, I also hate to look at the negative side, but sometimes I just feel pushed to the limit with no end in sight, except when the time comes that she doesn't recognize me anymore,(Now isn't that a horrible thing to think!) you wanna talk about guilt? Don't hold back those tears, we have every right to cry with this job!

quote:

Gawd Maria! THANK YOU FOR THIS!!!!
THIS is REAL

Yeah, BG, it is real.

Unfortunately, it’s only the tip of the iceberg. If I were to write just about my thoughts and feelings of today, alone, it wouldn’t require any padding to fill an entire book.

Mostly I try to be upbeat, both here at ECO, and at home. If I can find the rainbow in a situation or if I can distract myself with more upbeat thoughts I do it. Besides, I figure, “what good does it do to give too much air-time to the negative aspects or how I feel about anything?” But I think I have gotten so good at this ploy that I’ve been hiding the truth from myself—about how I feel, and about dang near everything else, too.

I am afraid that I have been running around in such a miserable condition for so long that I may even be harming my children’s sense of how to live and how to cope in a healthy manner. I don’t think I look like a trouper and a survivor and an advocate anymore. I’m afraid that I look like a holey old worn out dish cloth—not good for anything but the trash, but still making the motions of scrubbing pots anyway.

They see me avoiding. They see me hiding. They see that sad face that I catch in the mirror once in a while when I glance up on my way through the bathroom. They see plans being postponed—(forever?) When they ask to go for a swim or to the park it seems like I can almost never make it happen...is this breaking their spirits? Am I teaching them to be defeatists?

I keep looking for respite… In this area, our daycare choices are very limited and when we have tried it Mom was supremely un-cooperative, and I spent all of my “free” time on the road dropping her off and retrieving her .

I’ve thought a bit about getting Mom in for testing for a few days…but, how could I do that? It seems that I’d have to be there to oversee things, you know? I mean, there is no one else to do it. I can’t imagine simply dropping her off at the hospital for a few days…it takes at least a few days just to get the nurses up to snuff on her conditions. (Okay, I know this is part of my problem, but I AM responsible for her. And, as you well know, all kinds of sh*t happens when there’s nobody there takin’ names.)

…then there is the in-home type help… I keep searching for the right fit on this one. It seems I’m just going round and round in circles. This does work for when I REALLY have to get out of the house for some reason, but it has not helped at all when I need to be seeing about things inside the house. If I’m home Mom wants ME. Period. Oh, gawd, don’t I sound like a whiny baby now!!?!?!

I guess I just feel like I need a big and complete break. …and then maybe I could jump back in to the fray refreshed. My brain has turned to mush and I just can’t even think straight anymore.

Anyway, thanks so much for reading and responding. I guess I’m better now. I’ve cried a few rare tears…and maybe that’s all I really needed After all, runnin’ around stuffing tears and really crying are entirely two different things, aren’t they?

This message has been edited. Last edited by: mariabee,

Gawd Maria! THANK YOU FOR THIS!!!!
THIS is REAL this is what I like to see (dont take it wrong)Im not saying I like to see you like this but telling truth gives others insight to this, that its not a picnic..And let me tell you Im right there with you with my own MIL its constant here too all the yelling and screaming and banging late nights no sleep.
There is not thing one you can do when they are like this frustration for them rules the roost. Feeling guilty absolutely not! Do not feel guilty this is an unreasonable disease sweetie you cant make this better no matter what you try and Lord knows we have tried, we do the best we can with what we have until we cant any longer.
Sweetie what do you think you can really do?
This is your mother she is who you define yourself by is it any wonder you are feeling a little helpless right now.
Can you ask her PCP for a little respite? Maybe he can arrange something for your mom, tests anything just to get a breather.