The Caregiver & Dysfunctional Families: How are you doing?

Just wanted to say Thank You in a very sincere way to all who have answered and commented to what I wrote. This has made a huge difference for me in moving forward. Many wonderful and to the point ideas which I intend to use to better my care for Mother. I try not to listen to negative comments from acquaintances and my surrounding, saying that it does not have to be this way and hints about that I should not have taken this task upon myself. I refuse to be rude, but wish people would be kinder and more considerate about how it is in reality...the hardship is not in the feeding, changing, the routine so much, but watching this formerly very strong, willful, independent person, who although emotionally closed to everyone was the first to help anyone with kind words, prayers and money, when she had very little herself...how many times she would help me out in a gentle and quiet way...even getting into horrific debt, which I discovered going through her papers, and now not able to put two words together at times in a logical way...remembered everyone's birthdays, feasts, etc...just watching her wasting away....much of it because she refused people's presence and companionship and dug deeper and deeper into work to keep afloat with the perfectionist attitude and various other things which were instilled in her from childhood...Her Mother instilled in her that she was a piano prodigy and nothing else...then all disappeared on her 16th Birthday when she saw her Mother torn to pieces...then in America as a young immigrant with two little kids and a crippled Father and no English becomes a widow very early...rest is history of living in poverty, hard work, but giving her girls a European education at the least... Anyway, I am venting now and am very sad...but THANK YOU all for letting me let out some steam...my family feels that I should have 'put' her away, as our life has changed!

Tamma, when I read your story it brought me to life I relate so much. I haven’t a clue what is real, but have been able to frame my experience (people dying violently in war and others sacrificing so much they ate the dung-coated rotten apples of farm animals because that is all that could be eaten). My little girl friends were awakened at 3 a.m. and fed, their parents having both been in concentration camps. My husband sleep-walking, his father sleep walking with a rifle to protect the family in California during the War. The frugality and self sacrificing of my dear, damaged mother. No matter how much I read that I matter and my life should matter, how can you matter when your mother was someone who went through what your mother went through? I want to thank you for making me cry, when I was feeling “pretty darn dead.” My mother was a tormenter for a good reason, perhaps. I so need to believe that the BPDs, the malicious narcissists, the apparent cold – they are loaded with buried, seething feelings that WE took on. We knew, they taught us to know. Not allowed to speak of any of it. Like my parents and the parents of the kids I grew up with – “Don’t speak of that.” Now baring the shame of not having the mature insanity they took to their grave. My heart bleeding that as each year goes by after Mom’s death, I knew so little of what she endured. I could never be her friend, or someone who truly loved her, as her wounds were too deep. Not sure I’ll ever sleep again, and she’s been gone five years. How do you live with such knowledge?

50's Child do not be hard on yourself-my mother was a narcistic person which I learned about on AC and for many years I blamed myself for our relationship but near the end of her life before she became very ill I realized that her words no longer had the power to hurt me and that alone was freeing for me.

Brinoz – sorry to hear about your son and his wife. I hope they work it out. You actually sound pretty depressed even now. Are you being treated for that? I am glad your husband and daughter are helping with your mum. It gives you a break and there is nothing wrong with taking the easy way out when the job still gets done. I am seriously considering that too. Sometimes we have to get what looks like selfish but is really self-care. What I have found through various disasters is that life does go on even when bad stuff happens. My youngest son was killed at age 23 over 12 years ago. Life went on – not the same as before but it does go on.

Sandwich – I like your idea for a funeral and send off. :-D

Alison! Wow - that sounds a whole lot better!!! It would be great if both g tube and catheter could be removed and your dad could live more independently, Woo hoo! Also sounds like you have developed a good coping mechanism. We have to let off steam somewhere. A nice text from bro. Another Wow! You got it about not spending time with those with whom you have hurtful relationships. Makes life a lot easier. Have you got the rescue pup yet? I do hope that your Christmas is a good one. Fresh food or home cooked is the way to go. G is big on lemon juice.

Book – I am glad you have one sib that is sympathetic and who can say he loves you. I know that meant a lot to you. Somewhere else you wrote about crying long after your mum’s funeral. I think it is a protective thing. We hold ourselves together until it is safe to let go. Often something can trigger a flood of feelings. It could happen again. I found that after my father died and, of course, after Gordie.

Tamma –what a story! We have no idea how we would cope with life under similar circumstances. Of course ,everyone/family is dysfunctional to a degree. None are perfect. I have no doubt that she has PTSD with all she has been through. Let us know how you make out with an evaluation. Sounds like your mother is an amazing person. Re “putting her away” or other recommendations from family. You are the one in the trenches, so to speak, and you know what you can deal with. At the same time I will say that it is very important to care for yourself. The total care of another individual is very draining. There can come a point where they need professional care. My mother, for several reasons, is in a facility –soon to be moved to a more appropriate one. There is absolutely no way that I could cope with her in my home. She is 102 and I am 77 and that is reason enough though there are others. The latest figures are that about 40% of caregivers die before the person they look after. So please make sure to look after you! Sometimes a facility with professional staff can do more for an ill person than family in a home setting.

50schild – you do matter - doesn’t matter what your mother went through. That was her life and her lot to cope with it. You are a separate person and have your own life to live. How do you live with it? You have to let it go. It is the past. You don’t lose the lessons from it, or the sensitivity to others that you have developed, but the horrors you need to let lie in the past. Great compassion can come from great pain. Each day is a new one and a new opportunity to live and love in the life you have been given. You couldn’t love your mother, then love someone else. After my son was killed I found a poem – “Give what is left of me away.” I will paste it to a separate post.

Austin – always good to read your message

This speaks to me so much of my son. He was a very generous person.

Give What's Left Of Me Away

Now that I'm gone, remember me with a smile and laughter.
And if you need to cry, cry with your brother or sister
Who walks in grief beside you.

And when you need me, put your arms around anyone
and give to them what you need to give to me.
There are so many who need so much.

I want to leave you something.
Something much better than words or sounds.
Look for me in the people I've known and loved or helped in some special way.

Let me live in your heart as well as your mind.
You can love me most by letting your love reach out to our loved ones.
By embracing them and living in their love.

Love does not die, people do.
So, when all that's left of me is love, give me away as best you can

Author Unknown

Emjo what a beautiful Christmas memorializing poem. For those of us on this thread, who are grappling with the PTSD-type flashbacks of trauma and trying to blend that all with the goodness that is also begging for air, your son has really led you to share this and touch so many. I always read your wisdoms and BELIEVE them. I guess I need LOTS of reminders because it is so very easy to get pulled back into the Pit, with the generations of violent dysfunction that are now grappling with their own lives, the famous dysfunction Gift That Goes On Giving. Sometimes I think of you as a Joan of Arc that stands up and answers folks no matter what they have witnessed and shared. Everyone, keep warm and joyful for the gifts we see here. I'm in tears to be able to read and write to people who understand with depths that take my breath away. And you're all here in this one place, wow!

Emjo that was a wonderful tribute to your careing and sharing.
Just hope you don't end up like Joan of Arc!!!!!!!!!!!!

50'sChild,

Listen........most people have war stories, immigration stories, of our parents, grandparents of the suffering endured in the past. I have some of these too!
But we must be mindful of allowing ourselves shall I say to become so emotionally involved in their pasts, so that we can't figure out other aspects of people's lives and how they've influenced our own, especially when it comes to our own self esteem.

My mom is from the Depression Era. She worked hard too, for which I'm grateful. However, this caused her some heavy emotional detachment as how she dealt with her family, and my dad. She basically alienated my feelings towards my own father, (now deceased). Sure I may have felt in the past that I didn't matter, in the picture of my family of origin. But now I look at this soooooo differently!
Anyway, I truly encourage you to remember that you do matter, and do whatever re-programming you need to do about that. Yes, it takes some work, but the power it gives you, is amazing!

You matter, and don't let anyone ever tell you or make you think that you don't!

Much Love & Llight! Margeaux

Light Bearer Margeaux and Emjo of Arc, and others, you reached out and touched me in ways you probably didn't expect, but your candles are really, really good (with the brandy I'm having right now to celebrate something). Emjo, I never meant to mean that you are martyred, quite the contrary. I should have said that you remind me of a sane, sensible and highly advanced Joan of Arc who lights the way for others, not one who gets engulfed in flames. A brave soul of near-Arctic, boiling bones and igniting others. I am about to leave my husband (with his encouragement though pending heart surgery) to do the postponed Thanksgiving, and visit Dad, with both violent nephews and my squashed 261 pound, 4'11" sister who carries on no matter what. Last time I saw #1 (chronological) nephew he drove the car 120 mph and threatened suicide (never again in a car with him). #2, tatooed all over but cries if you look at him in a way that makes eye contact, throws things and oh so abusive to my sister. Sister has finally stood up and with the help of county mental health, given #2 three options: 1. Police-assisted eviction from her home, 2. Simple possessions put curbside, all of them with locks changed, 3. Go to county mental health counseling. No. 2 is a manipulator, so of course chose option three. And he'll get by. What he doesn't know is that sis is serious this time. She admits making threats to him for 10 years while indulging him (like James Holme's mother) because she felt so guilty about divorce and her working two full-time jobs -- was not working. This was quite a breakthrough for her. So though she doesn't write here, she, like I, have had guns held to their heads. And I hope that you will pray for her during the coming months as her kids pull out all the stops. I am prepared to call Dad's local police if it gets nasty. I will NOT tolerate their abusiveness. I bought sis way too many gifts -- that is sooooo wrong. But for her, it's the only proof that somebody loves her. Thanks for listening again and again.

Tonight I give the gift of love to my oldest grandson. I am taking him to supper and we will have a chat about family stuff. There is stress between him and his mother.Through Gordie's death and other hard things I have learned to be bolder in speaking from my heart.

Veronica I won't crash and burn - freeze more likely in this climate. ;P Hope you are doing OK with the procedure.

50s - thank you for kind words and prayers for your sis and all. She is making the right moves. I didn't think you meant martyred. My image of Joan of Arc is with the banner leading the troops, not in the fire, though I have been through many "fires" of the soul. We all need daily uplifts. It is so easy to forget the blessings. I am glad you are standing firm beside your sis. That is the best gift of all.

Margeaux my mother was a depression child too. She said they didn't ask for seconds as there were none. My father fought in WW1 on the front lines. People carry it with them. How can they not?

Love and hugs to all.

To all my new friends - may this holiday Season be of great joy and love to all! Celebrate life, the good times with the loved ones we are still caring for and those who have left us in body only! Merry Christmas and Happy New year and let us all remember one another and keep sharing our thoughts, ideas and pains, but be forgiving and loving at the same time!

I have a long time girlfriend, who just loves to give gifts. When she has given me something, it's not like one blouse, it's usually about the same one 4X's, literally.
She gives me gifts for my birthday, then on Christmas here it comes again.

I'm at odds with this gesture, since I don't like for her to spend so much money,
and I'd be fine with just one item. She always seems to make a big deal, by announcing the forthcoming gifts, too. Anyway, she's called me recently, and wanted to get together some time this week, as she says, to deliver my gift.
I don't have this extra money to be giving her a Christmas gift, since I already have the obligatory few gifts for my mom, sister, and sis's 3 grankkids, then even though my husband and me are fine not making a big deal out of gift exchange for Christmas, many times I've not given him something of more value, because I'm stretched financially getting those other people gifts. Boy oh boy, so my gf, calls me and starts to say, that she'd been to a couple of Christmas parities w/some old friends and they exchanged gifts. She also said, this: "I guess people don't know what to give me, they keep giving me green tea." HAAH! I was almost going to get her just that, but now that I know this, have to think of something else. Anyway,
I'm just wondering if by she saying this, complaining about what her friends have given her, she is having some expectations of gifts received. I find this interesting, because she also said to me today, that she gets such a thrill giving gifts to people, so that it's done for her own joy. The part I'm not liking though, is that I feel somewhat pressured with her. Oh well! She's just going to have to be happy w/whatever little economical idea I dream up.

She told me recently, that she had something like a $500.00 budget for gift giving,
and she even gives things to people she really doesn't know, like some neighbors in her trailer park. What's wrong with her?

Much Love & Light! Margeaux

I guess it's Bahhhhh Humbug time again!! HAAH!

Much Love & Light!! Margeaux

Margeaux - that does not sit well with me either. Sounds like she has low self esteem and is trying to buy love or attention. I think I would be up front with her and tell her that you don't give big gifts and would prefer she not give you much or even that you cannot exchange gifts with her any more. I would feel pressured too. It is a pretty uncomfortable situation, but only you can change it. Good luck

Margeaux I would not worry about the value of the gift you get for her-even cookies made from a box are good -there is frosting for cookies you could put on-she has the money to spend and I feel gifts come from the heart and it is not the cost-I am lucky I only give to my son and grandchildren and daughter and her husband unless I am out at my sister's during the holiday and a gift to my boyfriend-but we both are frugal and get a small gift or last year we did not get gifts and I do not want to spend 5 dollars on a card when we can tell each other how we feel

Margeaux, give her some little Chinese tea cups. You can get them for a song, and even the most inexpensive ones can still be so pretty.

Competitive gift lists… oo nasty one. I've learned - mainly through being extremely broke! - to get over feeling shame-faced when I hand over the best I can do and dread that someone else's present to me will be wildly more expensive. People who are doing it for oneupmanship will soon stop if you don't play. People who carry on must just like giving you nice things. Some people do take enormous pleasure in choosing things for others - you can let that be part of your gift to them, I suppose?

My mother's still at it (I almost hope will be again) - she sees an advertisement for Tattersall shirts or something and say "do you think So-and-So would like those?" I narrow my eyes and say "Why, do you ask?" It's almost never anyone who would actually expect something from her.

Bah humbug. I have found that people are relieved when they hear there is no gift exchange. Many people are financially pressed, so buying the extra gifts is a burden. I buy token gifts for family members to give them when they come for dinner. It is usually candy (box or homemade) or nuts. Those are always a hit and don't break the bank terribly. I bought nuts this year from me and candy from my mother. My mother also gives a little money, but not enough to really be worthwhile.

Cm - how is your mother? Is she any better?

Update on mother - I ought to be in bed but last night couldn't get my eyes to stay shut so I need to get more tired - very frightening 24 hours. The worst of it was that she'd been admitted to the ward, settled in nicely, many symptoms were wearing off with just some residual left side weakness, the worst of it in her hand, she was making little droll remarks, the nurses and young intern had all been brilliant, the geriatrician had come specially to see her, I was about to head home to get some sleep and was chatting to the lovely nurse in charge. Mother chipped in to the conversation, and the nurse and I turned our heads to her as one - it was just a slurred noise, not speech. Her face collapsed, her eyes were rolling. The nurse said quietly, very matter of fact: "we have an event." The next hour was a bit of a blur of observations and rearrangements and highly competent nursing procedures with me mainly dodging out of the way. It had been so sudden that I didn't want to chance leaving. Then the ward sister appeared and ordered me home. I considered mutiny but agreed on condition that I'd be back in three hours. If I hadn't trusted their promise to call me if there were more changes I don't think I could have left.

What scared me most was that they had done everything right. Everything. And still she stroked, in hospital, on the right meds, with all the right treatment, and with nothing to see on the scans. Not fair. I went back in the evening and held mother's hand until Sister's shadow loomed in the doorway, then home again with my tail between my legs.

They did a second urgent CT scan last night after I'd left and found the clot. At least that takes some uncertainty away (I'd still like to know where it came from). Today she's looking better but this is going to be a long haul, and of course now I'm scared it'll happen again.

Oh, and a little kicker that will amuse you. I'd texted just my sister and daughter with the news and left them to pass on the message to their respective siblings. In the evening, my sister told me she'd spoken to my brother and he'd told her he would ring the hospital himself to see how she was and send his love.

I mentioned this to mother's nurse today, that mother would have been pleased that he'd rung. She gave me an anxious look, and explained that they couldn't give out information to people who called up claiming to be relatives, but she did think my other sister had rung. My other sister? Ah. "You mean M___? She's my sister in law. There are one or two issues there."

What in the name of heaven is his problem? This is all he had to do. He ends the call to my sister. He picks up the phone and dials the number she's just given him. He says a total of, what, forty or fifty pleasant words to a nice human being at the other end, and that's the job done: the nurse tells mother her son sends his love, mother is happy. Where, where oh where, is the ordeal in this that is so terrible that his wife has to do it for him?

Sorry Emjo - too busy typing to see your post - thank you so much for asking. It's "hope for the best, prepare for the worst" really; but I'm less worried for her than I was 24 hours ago.

After his blistering email to you, I hope he feels some chagrin. It would be to his credit. Too bad he didn't call.

That must have been very scary for you and for your mum, and must still be. (((((hugs))))). I am glad that the ward sister sent you home to bed. You must get sleep. Your mum needs more care now.

I am reading your pain, about your mom, and bureaucratic BS about your family trying to get in touch with each other and get permissions. You are going through the unspeakable. What can I do (I can research and get you most legal of info). Let me help, retired librarian. I send you love and support. You are in Canada. The calls you are fielding are a mess. Trust your instincts, there is no hurry with anyone, especially if they haven't been known for 12 months or more, forget them til you can sanely call. Til then, you do what your heart says. You get sleep and hold Mom's hand. She may be fading, and though she may not know, you are there and you will do what you must do. Just trust your heart, and for the rest of it, have a little piece of paper you write names down on. Answer all calls when you can, promise nothing, take nothing on except for what your heart tells you. If you doubt your heart, call your best friend and talk it over. Get sleep as you can, which you can't. But sleep as Mom allows, or would have allowed when well. You are stewarding her end, and you could not be a better person, ever. Or I am wrong about the end, but it sounds like that. I am awake with you.

As a nurse I am a firm believer of just holding their hands-you do not even have to talk-I was so glad when we got DNR orders because when family was not present I could just hold their hands. A funny story about giving out info on ts. we had to be very careful we had a lot of famous people cross out path in my hospital-one day I got a call from a young women asking about a pt. saying she was his mother I gave the spell we could not confirm weather a certain pt. was in the hospital-when I reported this to the young man he said if it was my mother the call was long distance Mom is in heaven. My husband played games even in his last days he would respond to everyone one but me.

Emjo, she wants to come home. First intelligible thing she said: "I don't like being in hospital." If she improves enough for it to be responsible, I'll arrange it - her GP is wonderful, I know he'll do the arguing for us if the hospital puts up a fight. Or, if anyone says she is dying, ditto. If she's dying, why not let her do it in her own comfortable bed at her own pace in peace and quiet? I really don't think the hospital would contest that, based on the attitude I've heard from all the staff there on this occasion. Such a relief to feel so much compassion from insanely busy people.

Must stop being morbid: she's not dead yet!

I was wondering what my brother might have to say for himself, but you know what? I'm tired of thinking about it. He can sort out his own problems, and if he wants to blame me for them I honestly couldn't give a toss.

CM my thoughts are with you do not waste any thoughts on your brother -he is not there for you-that is his problem not yours-I am glad the staff is supportive my husbands last admission to the hospital was awful when I got to the ER a nurse ran down the hall to me insisting I sign a DNR telling me I had to-I said no way I had not even seen him yet-I and my kids waited until we were assured they was no hope for a recovery-she even said out load to us and people from my church that night-he was aware some of the time-that he really was not alive they were just keeping him alive-I was too distraught at the time to pursue it at the time-when I got home the NH he had been in had left me a message about paying his bed hold-I did call and gave them a piece of my mind.

Austin, you know that famous picture "The Scream"? That's my face reading your post. Horrific. What goes through these people's heads, for heaven's sake?

Emjo,

You don't know how many times I've tried very carefully to hint to her that she really doesn't need to do this, for Christmas. But it seems to fall on deaf ears.

You said it Emjo, she does have some self esteem issues.
She comes from a super dysfunctional family and has distanced herself from them, but she just can't seem to manage after being away from them to manage her emotions about it. Maybe she needs to fill up that space by the gift giving?

Much Love & Light! Margeaux

Austin,

Thanks. I am thinking of making some cookies.
Yes, I know I shouldn't focus on this. I know it was bugging me, since she kept talking about how she's been playing Ms. Santa all week long. I almost felt as if she was bragging. She is quite childish in this respect.

My husband and me are quite frugal also. But this year, I'm planning to get him something a bit more special, because last few......he's been like the last guy on the totem pole, since I get burned out getting other's (obligatorie's) gifts.
I think he deserves better. It's not even going to be anything outlandish, he needs another pair of sweat pants. So thought that would be good! I am making some special foods the next few days, so I know he'll love that.

Much Love & Light! Margeaux

Bingo.....Emjo you've said something that I hadn't connected!!
My mother employed this. She was very emotionally detached, but used gift giving as a means of buying love. No wonder this bugs me sooooooo much!!!!!!
Wow!! Thanks.

Much Love & Light! Margeaux

Countrymouse,

I like the idea about the tea cups.
I went to a thrift store close by my house just the other day.
I found a small brand new never been used little Cuisinart food processor.
It was only 3.00, maybe I'll stop by there, and see if it's still on the shelf.
I would have bought it, although I was just doing my walking, and stopped in, didn't have my wallet! Thanks Countrymouse.

Much Love & Light! Margeaux