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    LYNNGINN1   68,864
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In my shoes

Tuesday, March 12, 2013

My God! - day after day you look out through the "prison" bars (I know it's a terrible way to think about it when talking about family ... but like they say, if it looks like a duck and sounds like a duck ... lol). Anyway, you look out to see the sun shining down on people - people going about their day to day lives, making plans/ doing things without a thought, even complaining because they have to jump in the car to go get something and they don't even realize or appreciate how lucky they are to be able to do these things.

Meanwhile, back in the "prison" your day (everyday) consists of endless repetitive conversations, complaints, tantrums, schedules etc. that with each passing day eats away at your sanity.

You long for freedom, long for all the things that others take for granted! Just to be able to go to the bathroom, eat a meal or have a conversation with your spouse(or anyone) uninterrupted would be like a dream come true! Oh and how WONDERFUL it would be to be able to go ... just go anywhere, without first having to come up with some kind of a battle plan! Dreams, dreams of such ordinary things that seem so out of reach.

The problem is that you know what needs to be done to attain your dreams and you dread the thought of it, it seems like such a BETRAYAL! After all, it's not like they're doing this to you on purpose, it's not like they can help it! You think of how they used to be, you think of all the things they have done for others - including yourself, you say to yourself, how can I do this to them?, how can I leave right when they need me the most?!

On the other hand, you see your chance for life passing you by - days turn into weeks, weeks into years. You find you have grown old beyond your years, that you are a mere shell of the person you used to be - your sanity challenged, emotionally distraught almost destroyed and physically worn to the point of total exhaustion - all you want is for it to be OVER! The MOMENT that thought crosses your mind, the guilt begins again ... and round and round it goes.

There comes a time however when you finally have to make a choice ... I don't like the choice I'm making, I take absolutely no pleasure in what I HAVE to do, but for my own survival and for the health and well being of my family, including my Mother, I have decided that I cannot go on the way I am. I have to face the fact that my mom now needs more than I am able to give.

I have to say these things to myself (out loud) many times a day to try and drive the facts home (that's a big reason why I wrote this in the first place ). It's amazing the way even just a few minutes of Mom being "good" is enough to over power hours and hours of Hell and make me question my decision ... but I can't afford to waver this time, there is too much at stake!

My advice to anyone reading this, that knows they are going to be facing a similar situation in the future, is to get things started early. Just because you have things in place doesn't mean your going to have to implement them right away. One of the biggest mistakes I have made (and I think this is true for the majority of caregivers out there) is that I waited way to long to get things started. I waited until I was at the absolute end of my rope, all because I didn't want to give up - give in - admit I couldn't take care of my own on my own. Now I'm at a point where I want/need things to happen RIGHT NOW and here's a shocker ... it doesn't work that way! There are meetings and appointments, testing and paperwork and they all take time - not to mention the waiting lists that you get on after all the other stuff is done.
So please remember, although it may feel like it at the time, being prepared is NOT giving up on your loved one!


Member Comments About This Blog Post:
SNOWANGELDIVA 4/26/2013 9:56AM

    True strength comes when you realize that you're not afraid to carry the world, but, that you shouldn't.

emoticon You are strong.


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ISAVEDME80 3/15/2013 10:50AM

    I know exactly how you feel my grandma has the same as your mom as we have shared with each other. my grandma has been living with me since 2007 and i feel so much like you do. I was only 25 when I started doing this and now I feel like I'm 80.
I was once happy and had a life where I didn't have to worry 24/7..
Now I'm 32 going on 80 *baby-sitting* someone who I love and I tell myself I can do it because I just couldn't image someone being cruel to her.
My mom made me promise to never put her in a home and then my mom died so i lost what little emotional help i had with dealing with it.

your smart for accepting you cant do it alone. its very hard and God only knows how i survive but I do and thank god for that.

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MMAZZIE 3/14/2013 9:54PM

    emoticon emoticon emoticon

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PEARLAP 3/14/2013 4:36PM

So proud of you for letting this out. For sharing with others what is so difficult, simply to help them. You are an amazing women. I'm so proud of YOU and so THANKFUL that we are family. Though I'm miles away, I'm right here and supporting your every move. Close your eyes, feel my hugs, and know I'm sending you my strength every minute of every hour, every day.

I love you,

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DRKEYEZ820 3/14/2013 12:52PM

I feel like that ,being a mom and wife. I think many feel like that, we just don't know it. lol
But your mom doesn't expect you to give up your life for hers. She gave birth to u , and the one thing she has ALWAYS wanted was for YOU to BE HAPPY. She knows your not betraying her, she knows your human and can only handle so much.
I admire you, for so many things, this blog just happens to be one of them. You will always be a good daughter, and just because your fighting for your life doesn't make u a bad one. ALWAYS KNOW THAT!

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QUEENMOXIE 3/14/2013 11:39AM

    Lynn, your words touched me. I know how difficult this decision is, and I know that you are doing the right thing. I always believe that if what I am doing is a constant struggle, than maybe the path I am on is not the correct one. I am praying for you. You are in my thoughts. emoticon emoticon

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JULIAMOONCHILD 3/14/2013 11:31AM

    Just reread this again. Wow!
If there is an Alzheimer's Association in your area, and even if you are not able to attend any of their support group meetings, I would ask you to consider sending them a copy of this blog. Seriously!
To have it read out loud, or passed out to others attending those meetings (and I been there, myself) would be like a lifeline to many. I have sat in support group meetings where someone is describing the caretaker role as only a 'blessing' - and I am sitting there thinking, "what the heck! -what is wrong with me!" ... And then, fearful of sounding too harsh in describing my own reality, I have, from time to time, censored every thing I had to say - And that is an injustice to the stark reality that so many of us face. It truly is. And I would wager that if one digs deeper into the facts of those who call it only a blessing, it is usually discovered that they had"shared help" on a regular basis in care-taking and/or the person they cared for did not manifest all of the more wretched symptoms that most dementia patients eventually have ... OR ... the person they cared for was, early on, in a Nursing Home or some like situation, where they visited them on a day-to-day basis, perhaps, yet they still had a private life.

Nonetheless, regardless of the "blessing" circumstances, and I surely to not condemn anyone who has had that wonderful experience, it is not the norm. And for normal people going through this hell, I think they deserve to hear from others, like them, just how wretched the real norm can be, how life robbing it can be, how horribly unhealthy it can be, and that they are not alone in their feelings. Removing the guilt is what needs to be focused on - and your words go right to the heart of that need.

I hope I am not driving you crazy (I mean even more crazy) ;-) ... but knowing how much this means to me right now, I have to think of how much it would have meant a few years ago, when sitting there at one those Blessed meetings, thinking of myself as some deplorable human being for not also considering it a blessing, and the GUILT that was heaped, because of that, on my already guilt ridden heart, and I think .....there are so many others thinking the exact same thing, but this could liberate them from such utter nonsense.

OK, done tormenting you (for today)
Love ya! emoticon

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PICKIE98 3/13/2013 5:10PM

    Blessedly, Dad died before we had to make that decision, but mom did not take proper care of him; let everybody else do it.. now the shoe is on her foot and I learned from my mistakes and she is happy and does NOT want to go back home from assisted living..
If she was diabetic and you no longer could provide her with her meds and diet, would you continue to keep her with you? Of course not. The gut instinct tells us when it is right.

Actually, I have had those shoes for years,, first my Grandma, then an aunt, then an uncle, then my dad, now mom.. I am pretty sure I am next and DD will be wearing the shoes,, God help her..

Comment edited on: 3/15/2013 12:30:26 PM

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ADAGIO_CON_BRIO 3/13/2013 12:39PM

    I can identify with what you have written very much. I have been in your shoes and am no longer there. When I was in your shoes I went from being a woman of 130 pounds who had free time, hobbies, pleasures, and a reasonable amount of self-respect to (flash forward some years) to--to a woman who weighed 250 pounts, whose only pleasure was swift dates with Ben and Jerry's ice cream, whose only hobby was planning to buy and then to eat food, and who had no self-respect. I was always on the brink of contemplating a murder/suicide or just plain a suicide.

I almost cannot remember how bad it felt. And it still feels bad to look at it. Sitting around and waiting for the years to pass by is no longer an option, I think, for you.

It would be a greater betrayal, I think, of all that parents want for their adult children to continue to live in this prison. Nobody wants to believe it can happen but it happens all too often and I think that your mother, or any parent, would want you to live your own life, free from any shackles and figuring out how to free yourself from whatever manacles keep you down.

I cannot tell you how strongly I believe this. I wish you the very best.

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MZLADY77 3/13/2013 12:20PM

    Thank you very much for sharing this blog! Somthing to think about. What you are saying is true and God bless you. emoticon

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63KEEPONGOING 3/13/2013 11:55AM

  My precious, precious friend only the Lord truly knows what you are going through and how your tender heart cares soooo much for your mom. My mother was my best friend and there was no way I could take care of her need at home. I had to let her go to the Nursing Home. This was not giving up on her; I coontinued to keep a good eye on her care there. I even fixed brownies for her new caregivers on her behalf. They loved her so much and did everything they could for her.

YEs, you do have a life and responsiblities to the rest of your family. You must do what is best for all around and not brow beat yourself for the decisions you make.

I will keep you in my prayers. Bless you my friend. May God give you the insight as to what to do and the courage to do what that may be. emoticon

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JULIAMOONCHILD 3/12/2013 10:32PM

God love you!
I love you!
Thank you so much for writing this!
You have just written the masterpiece of what it is like in all fronts of this life of being a caregiver. Every single word that you have written here, I live and breathe daily, but could never capture all that it encompasses in trying to describe it to others. You have done just that, however, and have spoken my heart and the hearts of so many others perfectly. All that a person feels about the life that is passing them by. Feeling Old before our time ... The tears, the guilt and how one good day, even one good moment can, as you say, "is enough to over power hours and hours of Hell and make me question my decision" .

I am floored by this blog and the timing of it. It is uncanny ... coming at such a moment in my own decision making process and right after speaking today (again) with a nursing home and getting on the "waiting list" after advisement yesterday from an attorney, who very much gave the same advice that you give here about not waiting any longer (since I am already shell-shocked and nearly one foot in the grave). And even as I pondered today, my decision, it just kept going back to that wretched feeling of guilt ... yet ... I can't go on like this ... and like you, I want and NEED things RIGHT now! Things - like a life of my own again.

This blog has me in tears. It speaks a truth that has touched me to the core of my being. Making me understand all over again that my truth and your truth are not born out of selfish wants and needs, but out of a desperation to survive. It is within every human being survival instinct and we have for so long now disregarded our own right to not only have life but to also live it. That is not a selfish need - It is simply a human must.

I am moving forward, too, and in some way I feel that I am moving forward right along with you. Still many things to take care of and the thought of how long it all takes can overwhelm the mind, but we will get through this because we have to.

Thank you from the bottom of my heart for writing this and expressing for so many of us EXACTLY what this is all about.

You are in my thoughts every day and I pray for you and your family.

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HEY_STEVE 3/12/2013 4:02PM

    Wow Lynn. You have eloquently put into words what you're going through. I am so proud of you facing this situation and for the decisions you're making. We will make it! I know how long it has taken you to write this blog and I'm so glad you've put what you've learned into writing. I'm sure this will help someone!!! I love you.

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