it's getting worse

[daylilyasguest]

Hi everybody.

After doing really well for a while, and having very good holidays, my mother fell off a cliff, medically speaking, the day after New Year's.  She's been in and out of the hospital, has had severe pneumonia with serious complications, and and has had fluid drained out of her head.  Her mental status has come and gone.  We were told she might very likely die last week, but she survived.

Now she is reentering acute rehabiliation, but I don't think anything much will come of it.  I was there yesterday to handle the transfer between hospitals.  She was pretty good when I got there, but by the time I got to her room at the rehab hospital (a 15-minute van ride away), she had changed into a completely different person.  The next three hours were probably the hardest since this whole thing began last September.  She cried, she screamed, she threatened.  And she insulted me with all the cunning at her disposal.  She kept saying I owe her $40,000 for my college education.  When I made up my mind to leave, I told her that I love her, which I have done every time I've seen her since this started.  She sneered at me and said, "Get out of here, slime.  You don't know the meaning of the word."

I know a lot of people would say that this is her illness talking, not her.  Brain-injured or senile people can get very mean.  But I wonder, too, if this isn't her "real" personality being released from social inhibitions.  She knows exactly how to hurt me, and she didn't hesitate.  How come she retains that mental function but not others?

I feel very bad today.  Throughout this ordeal, I've tried to believe that I have to behave by my own code.  I have to treat her with love and respect.  I have to act in her best interest, and stand up to my family if I believe that interest is threatened.  I've put 18,000 miles on my car driving to visit her.  I've lost thousands of dollars in income by taking unpaid leave and spent thousands on tolls, gas, and her bills.  I've spent countless hours planning different care and financial scenarios, talking to experts (including experts I have paid), visiting facilities, etc.  I am exhausted.  I cry very easily.  And right now, I feel that it's all for nothing.  My mother is probably right.  I'm a failure at everything, including love.

I don't want to spiral down into a serious depression, but I am wondering why I'm alive.

Sorry for the downer message.

daylily

[Hopalong]

((((((((((((Daylily))))))))))))))))

I am so sorry. Being called "slime" when you have worked so hard, with such crushing responsibility, to care for her.

It really doesn't matter if her dementia is causing psychotic blurts, or if as you fear, a toxic self is emerging now that her dementia is wearing away the mask.

Either way that comment and the way she's reacting has to be horrendously painful for you.

I relate, a lot. The sheer physical and nervous exhaustion of caring for a selfish elder is compounded by a lot of hurt. Knowing your efforts aren't truly appreciated.

All I can say is venting and posting is good,
taking care of yourself, really NURTURING care, is vital.

If you have to withdraw from it for a while so be it.

From my recent episodes with a very old NMom, I can just say:
There Is Only So Much Stress a Caretaker Can Take.

Don't sacrifice your life for this. This is her chapter to endure, and likely die from. You can't stop nature and it's very important that you not join her in the illness.

You are a good daughter. She is incapable of gratitude but you have integrity and you will have to thank yourself.

I am so sorry. You are not alone.

Hopalong

[write]

I work with dementia patients and it is not unknown for aggressive outbursts even in people with no previous history. Usually they are medicated. The families and caregivers are obviously shocked and upset even knowing their relative could not help it.

However when there is a history of such behaviour in the past, not only are you contending with a new trauma but awakening all the old ones.

You handled it very well and you are alive because the person who lives by her own code and is able to show compassion has a great deal to share with the world.

(((((((((((((((((((((((((((((((((((((((((((((((((((((())))))))))))))))))))))))))))))))))))))))))))))))))))))))))))

[write]

ps H is right- self care is really important for you right now.

Which might mean talking a break from visiting if it's making YOU sick.

[Sugarbear]

(((Daylily)))

I'm so sorry!!

No advice, just wanted to give some hugs...

[Sela]

Dear Daylily:

Your mother is lying.

Calling you a false name and accusing you of something that isn't true.

Slimey people don't worry about anyone else but themselves.  they give nothing to anyone.  They let their mothers die alone, without wasting a single moment worrying about them.  You can't hurt a slimey person with words.  Words slide off of them.  They are the ones who know how to hurt with words.  Slimey people don't have a code they behave by.  They behave however they feel like behaving, regardless of how it effects others.

People who don't love or know what love is...don't bother to put themselves out for anyone else.  They don't drive for miles or spend their time and money trying to make some one else comfortable or safe nor do those who don't know love care about the care of any one else.  People who don't know how to love let others suffer alone and never give it another thought.  People who don't know how to love, don't know how to respect and certainly do not care or bother to worry about treating any one with respect.

You're not one of those people, Daylily, and you are not one of those people who do not know how to love.

Please don't let her lack of appreciation, her hurtful words, her sickness, her unconscious bs.....any of it....penetrate any further.

You're a good person and you have been a very good daughter.  More than she deserves.  You have shown great love and compassion and respect and have treated her by your very admirable code of conduct.....with dignity and concern.

Please hug yourself.  Please forget failure and look at your successes.  You've succeeded in keeping a human, warmth, regardless of her attempts to squash it.  You've empathized when she only vomits bile.  You've managed to be charitable in the face of robbery (she's robbing you of your self-esteem....with a few measley...worthless..untrue words!!).

Call the securtiy guard!!  Bring out the sirens!!  Stop letting this theft continue!!

Take back what's yours, Daylily.  Be bold and hold your head high.

You have NOTHING........to be ashamed of in regard to how you have shown love or acted toward her.

She......on the other hand.......will need a thousand souls praying for her!!

Sela

[Marta]

Daylily,

It appears to me that you are not caught in any cycle -- you share a good and healthy relationship with your own family and the world at large. In every post that you have made, I've seen no wavering over the decision you made to care for your mother, although plenty of anguish and agony associated with the process. This kind of solid resolve and inner strength does not come from a sense of duty, or playing the role we were taught to play as N offsprings, but out of a genuine sense of love for your mother and your own values. Although I myself would not be able to do this, I think the choice you have made for yourself is the right one. You are different from the rest of us in this respect.

It is really easy to be washed over by strong feelings of others, especially when that Other is your own mother. Simply because feelings of hurt expressed by others are intense, intensely expressed, does not make them right. There is not a soul who will say, by yardstick of the normal world, that you are not a loving person.

It may be that your sense of failure comes from having failed to win love of your mother, not attaining the unattainable. In due course, you will have to deal with these feelings. You will have to deal with who your mother is, and it may be very difficult period for you, bring with it all kinds of questions about who you are and how you've lived your life. I think that the same inner strength that saw you through all these years will also see you through this period.

Love, Marta

 

[Hopalong]

Dear Daylily,

I love my Nmother but I do not like her, and never will.
I am caring for her out of all the same good reasons you are. I also have some resentment and moments of entitlement. I am not Florence Nightingale but I am still a good person.

When I blew up at her so shockingly two weeks ago I roared, I am a good daughter, and I am not ashamed of what kind of a daughter I am!

I realized later that I was really saying that to myself. The list of what I've done for my parents is similar to yours. And when it all began I didn't resent it for a nanosecond (I never resented one moment of caring for my father before he died. But he was a sweet, kind, appreciative person. He called me an angel for helping him. My mother is an N, and calls me neglectful, though I've lived with her and taken GOOD care of her for 7 years.)

That's the difference.

Let yourself off the hook. Let it go, let her go. Heal yourself. You will grieve but you will be done with it. Life will go on.

Love,
Hops

[Gail]

I'm so sorry, Daylily, for what you are going through.  Even if there's some medical reason contributing to her outbursts, that doesn't make them any easier to deal with.   It must be especially difficult when you are paying such a high price to care for her.  You are a strong, courageous, loving person who is doing her best.  Hang on to that.

Gail

[Hopalong]

Daylily,
Thanks to Miss Piggy's recommendation I just got the book Doing the Right Thing: Taking Care of Your Elderly Parents Even When They Didn't Take Care of You. I ordered it for one reason (my NMom took care of me with great zeal so it wasn't the subtitle, it was the excerpt...the first page makes it clear this book offers understanding for caregivers' fatigue and resentment).A few pages in there's a WONDERFUL discussion of how the culture demands that we sentimentaly love our aging parents and how hugely unfair that is. Sometimes we don't like them and the demand is pernicious to our health. It's also about setting limits about your care and how to do that without guilt.

I am excited to be reading it (got it in perfect new condition for $2.50--I always buy from the used book sellers). Just thought you might like to read it now too. I think it would comfort you a lot.

Hugs,

Hopalong

[mcginnis40]

Hi everybody:

I seem to have two different user names (depending on which computer I'm on), but this is Daylily.

I haven't had time to respond adequately to your messages, but I wanted to thank you.  There's a lot I'd like to say, but for now, all I can do is tell you that your understanding makes a huge difference to me.

More soon, if at all possible.

[mum]

((((((daylily)))))))) lots of love and light to you........

[Plucky]

Daylily, this is very hard and you don't deserve to be attacked.
You know that you have done everything you can, and you did it according to the type of person you are, not in order to satisfy your mother, as we know would be impossible.
It is very hard on an emotional level, but I hope you can separate your feelings from her words and just rely on your own knowledge of the facts.  Can you imagine anything you could do to earn her love and respect?  What more could you have done?

Not a thing.  You have done it all, much more than many would ever do, much much more than she ever deserved.   You know that you have done the best for her.  Those around you, husband, friends, know it also. 

You just have to disconnect your heart from her.  This is her last go round to hurt you.  For this once, make it not work.  If you can do it, it will help you heal from all the other times she hurt you.

My mother did the same, with some medical provocation.  She called me a liar, crazy, whatever.  I knew that she thought these things about herself, not about me.    Herself.

Your mother is the slime.  Just look at her behaviour.  Your mother cannot love.  Just look at her life.    It is all her, all about her, not about you.  She does not even see you, what you've done, who you are.  Let her take her empty shell to the grave.  Don't let her suck the life out of you.   Once she is gone....won't life be better?
a wicked
Plucky