I am a reluctant caregiver

guilt_carry-man

No pity. But this has been me for the last 9 years.

Again it is BlogapaloozHour here at ChicagoNow.  Once a month, if we so-choose, we have an hour to create and publish a coherent post.

This month, we are to choose from amongst the 50+ topics that have been covered since the exercise’s September, 2013 inception.

I have been a writer here since September, 2015, and so chose a topic from before my time:

“Write about a great challenge faced by you or someone else.”

I chose this topic because I’m currently going through the most challenging phase in my life. I am my mother’s main caregiver. And I am failing the challenge.

Mom is 88 and has Parkinson’s Disease (PD).  She was diagnosed over five years ago and her condition has remained static until recently.

I am no expert, but here is a short primer on Parkinson’s.  It affects motor skills, muscle movement and can affect mental function.  It is progressive and has no cure (although God knows, they are working on it).  There is no clear-cut cause, but it involves a lack (or leeching) of dopamine in the brain.

Here is a link to more cohesive info on the disease, from the Parkinson’s Disease Foundation.

Actor Michael J. Fox, himself a sufferer, also has a fine foundation for Parkinson’s research.

With proper medication, PD can remain static for years, but it always eventually progresses.

My mom was diagnosed with PD (shitty irony – those are also her initials) in her early 80’s, after my dad died, although we suspected it earlier, as she took a few unexplained falls while Dad was still alive.  She eventually stopped driving, going out by herself and walking without aid of a walker. Last year we sold her house, and she now lives in assisted living near me.

In addition to her physical symptoms, she is beginning to experience Parkinson’s dementia, which is difficult for all involved.

So why do I say I am her main caretaker if she does not live with me?  Because in her mind, I am.  She counts on me for absolutely everything.  Even with the scads of money she pays every month to assisted living, even with the in-house nurses and aides – I am still her go-to.  It is as she wants it.

In her pre-PD life, Mom was pretty strong and not particularly needy. Certainly not a burden.  But as her PD has progressed, things have changed. And I am alone – my only sibling and father are dead, and I’m single.  And I work full-time.  Every week it’s something else with Mom, through absolutely no fault of her own.  But I’ve been taking care of her for nine years now, since Dad died.  I have her healthcare and financial powers of attorney, I pay all her bills and make all of her decisions.

And I am losing it.

In the past three weeks, Mom broke her hip and then her wrist (two separate falls).  Her arm is in a splint and she’ll probably have to undergo hip repair surgery in the coming week.  I’ve been crying on and off for weeks. Surgery at 88!  Scares the shit out of me. I hate seeing her in pain, with this shitty disease, when all I can be is a bumbling bystander.

Yet I also find myself angry and resentful.  Mom’s care fell to me by default.  It was just a given, expected.  I’m alone, holding up the family flag of our own personal Iwo Jima, and letting it drop is not an option.

My own life has pretty much gone to hell, because the one thing I’ve learned is that you can’t live two lives simultaneously, you just can’t.  And Mom’s takes precedence.  Period.  It’s all I can do to get to work and back again, then see Mom, she what she needs today, learn my next assignment.

I used to think I was a good person, but all I am now is a reluctant caretaker.  The guilt is unbearable.

My Mom deserves so much better.  She is such a brave soldier.  She never complains.  I do enough of that for the both of us.

I wish I was more calm, a better “soother,” a better person.  But I’m not.  This kind of thing just doesn’t come naturally to me.  I work hard for her, I try like hell, and I don’t show negative emotion to Mom, because God knows, she’s got way too much crap to deal with every minute of every day.

But every minute of every day, I wish I didn’t have to do this.

It’s a challenge I have no way of winning.

To those of you in the same shoes, Godspeed.


 

 

 

Filed under: Life lessons

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  • I'm so sorry you have all this burden on you! I can kind of imagine how daunting it must be only from having helped my dad take care of my mom at her most needy for all of one week. I also have a good friend who is in a similar situation. Having to shoulder all of the fiscal and emotional burden takes a huge toll! You ARE NOT FAILING though. You can't fail when you show up and do your best. Not in this case. You need support too and if there's no one there to give it to you you're going to have to be your own best friend and stop tearing yourself down. Would love to have a cup of coffee with you and let you unload all this so you don't have to beat yourself up.

  • In reply to Angela Soriano:

    Thank you, Angela. I just needed to selfishly vent, because I can't to Mom. It's just been a shit-vortex of a month. (And I'm down for coffee! Or better still, gin and tonics.)

  • In reply to Michelle Babicz:

    The stronger the better. Sounds great! All we need is a time and place!

  • In reply to Angela Soriano:

    Will include cell phone and email in FB post.

  • In reply to Angela Soriano:

    I saw it; thank you, Angela. Will be in touch.

  • I am so sorry to hear what you have been going through all this time, Michelle. It's good to vent, but venting doesn't take away the toll it's taking on you. There are caregiver support groups out there. And remember the sage advice, you have to take care of YOU before you can take care of anyone else. I adore you.

  • In reply to Very Terry:

    My dear, you are very kind. I actually have been looking for a support group; it's just a matter of finding time to go. So much has hit the fan of late.

    It's not my nature to vent like this in public, and I'm actually very uncomfortable with the post. The only reason I'm leaving it up is the off-chance it might help another similarly-situated not feel alone.

  • In reply to Michelle Babicz:

    I am confident your post has helped many, many others. I hope it's also helped you somehow. Know that you are never alone. And it's OK to take some time for yourself. In fact, it's called survival.

  • You are a good person and this is a lot for someone to have put upon them. You're been dealt a terrible hand of unfortunate events and are doing your best.

    Always remember, there is a reason they tell the parent to put the oxygen mask on first before attempting to save their child....it increases the odds of success for both

  • In reply to Michael Messinger:

    Thank you, Michael. But it's not me who's been dealt the bad hand, it's my mother. I just feel so damned badly for her. It's one health thing after another.

    I'll have to find an oxygen mask. Good advice.

  • I went through the same thing with my mother and my uncle. It destroyed my finances and my life and almost ruined my health.

    The only thing I can say is do not take guilt upon yourself. And... there are organizations that will have somebody step in to "spell" you for a few hours or a day. I forget their names. I never used them because I believed it was my duty to be on call and ready for duty 24/7.

    You must think of yourself and your own health and welfare first. That is the lesson that I think your mother would insist up. I know both relatives did for me, but yet they needed help....always, constantly, immediately. It fell to me by default, too.

    My suggestion is not to hide this problem but to blog about it, talk about it, and, yes, complain about it. To those who will listen and even those who won't. You need to vent. Your own health and welfare depend upon it. Believe me.

  • Do not hide or bury your anger, either. It is a natural reaction.

  • Thank you for your words of experience, RD. Very sorry to hear what you went through, as well. It's such a common occurrence, yet has no map by which to navigate. I'm just now learning not to bottle it up, which is my usual M.O. I just don't ever want to get to a place where I take it out on Mom. She's such a trouper with this awful thing and its adjuct issues. I found a good resource this week online called caregiver.org, which had a great piece on the emotional side of caregiving. We are not Superman and we all need help through this kind of thing. Be well, and thanks again.

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