My mom has Parkinson's disease and I'm scared

Miscellaneous and Personal Stuff I Must Share
1

I knew something had to be wrong. Mind you, something is always wrong with my mother. She has heart disease, diabeties, bursitis, has had surgery upon surgery since I was a child. But this is killing me. I live on the opposite coast as she does so I haven’t seen her all that much…I see her about once a year and she looks like she is getting worse every year. She drops little hints on the phone about how sick she is, as in my blood sugar was over 500 a few days ago because I had to get a CAT scan. OK, even I know that sugar that high can put you in a coma, stroke you out and kill you. So she says these 2 whammies, doesn’t tell me why she’s going for a CAT scan and then changes the subject.

She refuses to talk about it. I know nothing about this disease. I am terrified. This is the first true hereditary disease that may effect me in my own life. Most of her other conditions were caused by her chronic obesity and her general approach to life. I’m tired of having to deal with her health issues. They have sucked the life out of me. I couldn’t do anything as a kid because I had to take care of her. I refuse to do that to anyone I love. And now here is the one thing I cannot control.

Anyway, I wrote this poem about my mom a few years ago, which pretty much sums up my feelings.

Fleeting Images of My Makeshift Mother

standing outside the Y Lounge
and smoking through
your junkstore ivory holder.
The busdriver wasn’t sure
if he should let me off.

(I don’t know the month or even the year,
but you were wearing a polyester blouse
with balloons on it—I would have forgotten that, too
except you still wear it when you paint
those drippy, fuzzy water colors.)

You ordered a Manhattan and a Shirley Temple
and rushed me to the bathroom in the back
like a secret.

That day, at the Y. One day.
The hollow sound of the piano key.
One key pressed gingerly.
You told me not to touch it.
That’s your motto.

Your licked crusty tissues against my chin.
A dab of your lipstick massaged into my cheeks.
Picking dirt out of my fingernails with your fingernails.
Menthol Chapstick worked into my cuticles and knuckles.

“Stop squirming. A girl must always be a lady.”

2

You don’t know me, so I wouldn’t presume to actually give you any advice. All I can say is that it appears to me that you have a lot of resentment toward your mom, and apparently that resentment has a valid base.

Now she is ill with a disease that ( I think) has a very strong genetic component, and once again it looks like your mom has “shafted” you…albeit…this time it is not her fault.

I don’t know what I would do in your situation. All I can do is tell you that my mom is gone, and I wish with every fiber of my being that she was still here with me. Now, my mom was wonderful and I KNEW it, but there were still things…things that I now look back upon with disbelief that I got so “het up” about…that I look back on with shame and regret. Shame that I didn’t have a little more love, a little more tolerance. A WHOLE lot less impatience. Regret that I didn’t recognize or appreciate her strength and her “life gifts” to me as much as I do now before she got ill…and then, dying. Times that I look back on and wish I had listened a lot more and shut my mouth.

I think , for me, the truth is that I DID appreciate these things…but I never truly thought my mom would ever leave me…so I didn’t have to tell her. Or nurture her as much as I wish I had before she got cancer. Oh, she knew I loved her. And when she got cancer, I took care of her and I made sure she knew I loved her. But I mourn the lost time beFORE that. The times when she said “honey, come look at this fabric…do you think THIS one would be better with this OTHER one, or do you think I should use THIS one?” [sub]making a quilt[/sub] And I said “sheesh, mom, you don’t need ME to tell you that…do whatever YOU think would work best.” And to my shame, I said that with impatience and your basic :rolleyes: attitude. When all she wanted was to SHARE things with me. What would it have cost me to participate in her life…even if I didn’t really CARE what fabric she used? It mattered to HER…and I wish I had made THAT more important than the fact that it didn’t matter to ME.

I regret these kind of things VERY MUCH.

I am NOT saying that this is true for you, I am just relating my own experience. Of course, I have no idea of the relationship you have with your own mom.

I am so sorry that you are going through this, and I hope that you and your mom will be able to come to a place of peace together.

But mostly what I am saying is that for yourself I pray that you will be able to forgive your mom and give what you can to her so that when she is gone you will be able to feel that you did all you could.

“I wish I had…” are, I think, the saddest words EVER.

Sending you love and prayers, both for you and your mom. And for healing.

My Love,

Cheri

3

First, sj2, I’m really sorry about your mom being so sick, especially with all your churned-up mixed feelings that clearly are involved in your relationship. And I can understand a bit of what you’re feeling right now.

But I’m here to assure you that Parkinson’s is a disease that can be lived with. For a long time. My dad was diagnosed with it in about 1980, and until a couple years before his death in 1998 was still quite active and involved in the community, and only spent the last few months needing full-time nursing home care – interestingly, because he’d had prostate surgery and that apparently kicked his Parkinson’s into high gear. Up until that point, he did quite well.

These days, there are excellent medications that help reduce the rigidity and loss of movement brought on by Parkinson’s, and also a brain surgery, called a pallidotomy, that can reduce the larger tremors that can sometimes develop. By the time they developed the surgery, my dad had been ill for long enough that it probably didn’t provide as many more years of activity as it could have if he’d been able to have it earlier in the progress of his disease. But he still had it, and it made him far more comfortable the last few years.

It’s a scary disease, but it’s also far, far rarer in women than men. I believe the stats are that only about 10% of Parkinson’s patients are women. So I refuse to worry about it. If I get it, welll, Michael J. Fox is out there bringing it into the foreground of the research front, and they’ll probably have figured out a way to get the nerves functioning properly again. But I don’t think I’m going to get it, even though both my dad and his dad had it, because of my sex.

You might want to talk to your mother’s neurologist, learn about her medication schedule. It’s important to use as little medication as possible, because once a tolerance is built up there’s no going back. And it’s very, VERY important to stick to an EXACT timing schedule on medication delivery. My mom used to carry around a little pill bottle that had a built-in timer so she’d know exactly when my dad was due his next dose. It made all the difference in maximizing his functionality.

Does your mom have people there who are helping her with her physical care? I hope so, because it sounds like you’re already drained and not in a really good position to help her out. But if she doesn’t have someone, you need to make provisions NOW for her future care. And get her to sign a living will and durable power of attorney if she hasn’t already, because dementia is a factor in the later stages of Parkinson’s and she will NOT be able to make good decisions for herself at the point where she may most need to.

If there’s any other questions I can answer, please don’t hesitate to email me. Believe me, I know how you’re feeling, but I also have learned a LOT about this disease from living with it with my dad for so many years. And the unknown is often the scariest part of the whole thing.

4

Thanks for the kind words. For the first time in a long time, I went to a bar and had a few drinks. There is no one I can discuss this with so I’m in an utter abyss. And reading your posts, this is the first time I’ve actually shed a tear. All my life, I just wished she would go away. I know she has had mental issues. She is a living child. She is perhaps one of the most vile, self-centered people in the world. She dictates, she shuns people that don’t appease her every whim. This is what I grew up with. I know nothing of her family. It isn’t “discussed”. My grandmother killed herself by throwing herself down a flight of stairs. She did this with brutal irony as she did the same to my grandfather when she found out that he had abused my mom. I guess it’s too hard for her, but she propagates all this pain onto her children. We, as a group, have cared for her her entire life. I’ve never been hugged, loved, nurtured. I am, in essence, lucky to be alive. I’m scarred with this performace-based anxiety which plaques me to this day. I did everything for her. I wiped her ass. I made her diet shakes. I went on diets at 11 to appease her. I exercised for hours in front of her…ended up with a feeding tube down my throat because her obesity translated into her starving me and I ended up an anorexic at 12. I screamed out for help. When I was a young lass I wrote the following from words I found in Hansel and Gretal by brother’s grimm…the only refuge I had was books:

Thin

I’ll push you,
Help you be,
Acceptable to me.

The Rest left puzzled,
The American vanity of
Kill, knead, cook, bake and grill.
All eat elaborate feasts,
You wicked animals, you lazy beasts.

Examine your cheeks, bones, chest.
Feel Fat for hours, no rest.

I’ll lure you, teach you,
All my expectations—
Repeatedly sleeping, slinking, swimming, weeping,
All acceptable to me.

Women, boys, girls, well-educated, poor!
Heaven is locked in me, crawl more!

I kissed their hunger
As they danced with scrawny hands,
Small heads built my
House of expectations,
Making me Master–in
My power—full of me.
Screaming, seized, slaughtered.
No more than
Duck-Duck-Goose.
So Scotticher, I appreciate your words, I do. The problem is, this woman, my mother is mentally unstable. She forgets things. Not by accident by choice. She forgets what she has done to all of us. She has chosen to forget her first son who died. She lives within her own fairy tale. She taught me nothing. She riddled me with guilt when I left the state for college. She sent me letters detailing how my abandonment effected her. That she no longer had anyone to take care of her even though she has 3 other children that chose to live a mile away from her. I lived under her thumb for 18 years. I saw a mentally disturbed, morbidly obese woman who lived through hell and chose to instill those values on her children. It’s been ten years, and even still, she tries to draw me back in. As an example of her wretched behavior, my sister in law had to work and forgot to call her before she left for a trip. As punishment for such a “crime” she refused to talk to my sis-in-law’s daughter, the mom’s 5 year old grand-daughter for 2 weeks. It’s not easy having this as a mother. I’m not getting up on the cross about it. I’ve survived. I’m doing OK. Thank you Zoloft and Cowboy Junkies.

Ugh, I’m messed up in the head. It is so hard to make sense of all of this. I haven’t had to deal with her tete-a-tete in years and all this is bubbling up to the surface…

5

So I’m not a total downer…Here is something I wrote from my dad’s perspective…even though he’s got ghosts of his own:

The Key

For years, my wife paperclipped the key to a fifty dollar bill and kept it in her coupon folder.

The key to our middle drawer, it separated our socks, our nightclothes, keeping her custom-ordered underthings from hooking onto the handkerchiefs she embroidered for me while pregnant with our first son.

Though I never heard her in there, rustling or arranging or reconfirming, I often imagined her doing so during her days at home while I worked confirming others’ checks and balances.

It was during the summer of 1974 that I found the key, not expecting to find it nor to experience the thrill it gave me.

My wife was at bridge with the other ladies. Earlier, I’d cut ends off toast and helped her place cucumber slices on the triangles covered with dilled sour cream.

In the bedroom, I had to lift the lace doily that almost covered the keyhole.

Sweating in the Louisiana heat, I opened my drawer on the left to have a fresh handkerchief, half hoping I had the wrong key.

Old eyeglasses kept for no good reason, the cat’s eye frames that accentuated her cheekbones on our first date. Hard contacts in a case, dried out and cracked, shattered. All left over from a time when she was young and our children younger.

A mysterious engraved compact, a familiar perfume I couldn’t place. The good scissors she used to cut my hair, when I had hair. Pictures of our children as babies, their weights and lengths scrawled in her pen but blurred.

Undisturbed, I clipped the key back to her money. I opened the icebox to find the meatloaf sandwiches made for me.

She was a bit shocked that night when I grabbed her and danced to an unheard song. The drawer isn’t locked anymore. If I could only remember if I was the one who left the drawer unlocked or if it was my wife.

6

On the other hand, I wrote this too:

            Symptoms

Last time I was here
(sixteen years ago)
Jamie was born.

Like last time,
Jamie is alone
in a room
with my wife,
who is carefully
stroking her hand.

She’s frailer now.

Last time I was here
in this hospital
it was the 4th floor
Maternity Wing.
You could smoke there
in the lounge
with the other
fathers-to-be
but not here
and not now.

Now it’s the 8th floor.
The Psych Ward
and Jamie’s got
a feeding tube
up her nose.

There aren’t a lot of fathers here on 8.
The ones that are
aren’t handing out
any cigars.

Back then my wife
was embarrassed
to breast feed
in front of me.
Now feeding tubes of
some white-gray matter
are fed into my daughter,
up her nose and
down her throat.

My wife blames me
for all of this.
Over the past year
I’ve heard it all
–be home more
–drink less
–talk more
–smoke less
–hug more
If I’d listened
I’d more or less
be a better father

and my daughter
would never
have stuck
a toothbrush
down her throat
to clear away
my wife’s
home-made
meatloaf and
cold pea salad.

It burns me to look at either of them.

Jamie’s eyes
are the ones
you see
in glossy
magazines

For only a dollar a day you can save a child!!

We used to go to McDonalds.
Just the two of us.
My wife’s idea.
Happy Meals.

Now she counts grapes.
Is escorted to the bathroom.
And finds me revolting.

ANOREXIA NERVOSA
who doesn’t get nervous?
BULIMIA
a third world country?
FOOD DISORDERS
like runny eggs
COMPULSIVE PERSONALITY
she’d make a good writer.

Knowing I can’t go in there.
I find myself back on the 4th floor
gazing at fat, healthy babies.
Daddy’s girls.
Removed name at the request of the author - CF

7

Hey, sj2, I tried to respond to your email but it bounced. Hang in there! Get online and educate yourself about Parkinson’s, and educate your siblings who live nearer your mom, if you’re still in touch with them (I understand that some families are not). See if you can work out a family plan how to deal with all of this. And if your mom isn’t capable of taking care of herself, which with Parkinson’s she may not be, it may be time to find a comfortable assisted living or nursing home for her. Good luck, and keep me posted. And keep writing poetry, it’s a great way to exorcise demons!

8

Hi sj2.

My dad was diagnosed with Parkinsons in about '85, and died from it in '97. The following is only my opinion.

It frequently happens that when there is a crisis in the family, the family either comes together or fragments. It also seems that one person becomes the primary caregiver. Because of the complex and conflicted relationship you have with your mother, and the physical distance between you, it seems like you will not become the primary caregiver (unless your siblings are males and/or married with kids while you are single and thus ‘free’, in which case they may encourage you to come home). If you don’t become the caregiver, I urge you to provide full support for the person who gets the job- it can be a very, very difficult job in the best of circumstances. There is truly nothing worse than having distant and non assisting siblings pop up with tons of advice and or criticism about how you can be doing a better job of taking care of so-and-so, while they are waving goodbye to you from their car window.

That said, you mom can do quite well for a long time- my dad didn’t become really debilitated until the last three years of his life or so. He did need some of assistance until that point, though. We built a small handicap-equipped apartment for him downstairs (converted the den to include a toilet, sink, and shower to keep him off the stairs, replaced the carpeting with smooth flooring to reduce trip hazards, bought a hospital style bed, etc) and I moved home to care for him. Later my brother (hi Coco) moved home also.

There will be financial considerations in you mom’s future too (hopefully the Far future!) . It’s quite likely she has too much income to qualify for assistance and not enough to pay for nursing care or a nursing home situation whether she is working or retired. We applied for a “Millers Trust” (this may be a ‘Texas thing’)so that medicaid would pay the difference. Not to get too complicated, but have a look at you moms state of health, income and state medicaid requirements earlier so that these things don’t catch you by surprise later on (medicaid in Texas reviews the applicants finances to the past 30 months IIRC).

Anyway, I wish you the best. Post again as things develop- I’m sure there are lots of people here who can offer great ideas.

9

I’m so sorry, honey.

I was very lucky, and clearly you weren’t. I hope very much that you are able to work out what will be the best thing for you to do for your mom, so you can find peace. What your mom did or didn’t do is what SHE did or didn’t do. You will have to live with whatever YOU decide to do…or not do. Sometimes people have to cut off contact with toxic parents for their own sanity. Other times, people choose to treat their toxic parent the way they WISH they had been treated. I think that you need to decide what is best for YOU and do it. And no one else has the right to judge you for whatever you decide…I certainly won’t, and I don’t think anyone else here will either. My heart aches for you…I just cannot even begin to understand the kind of pain you must be in.

My thoughts and prayers are with you.

My Love,

Cheri

10

sj2 you’ve had such a hard time and I can see how your mom’s new illness can upset you in the way that it has. I just wanted to let you know I’m thinking of you, offering a prayer, and hoping you can see your way through this. Take care.

11

My grandfather is the parallel to your mother. Destructive, abusive, controlling, oblivious. He has Asperger’s Syndrome, so he doesn’t understand the relationships he destroyed. He also has Parkinson’s. He is 95, and still hanging on, though in the last year he has gone from living on his own to not being able to swallow his own saliva (his meds stopped working).

He is dying. He is cared for. Carefully, and completely. But not loved.

The problem here is not just the fear of the disease, it is the grief unprocessed. You’ve got a lot of loss in your relationship to your mother - primarily the loss of the mother you should have had, deserved, and never got.

I deserved a better grandfather. One who didn’t obtain sexual gratification from his children, nieces, and grand-daughters. I did not deserve what I got, nor did I deserve the destruction of my mother, and the things she passed on to us, from her own history.

And yet I’m still okay. It took a long time of work, both alone and with a therapist (or two), but I’m free. There is a healed, a ‘better’, and a done. It never seems like it when you are in the middle of the labyrinth, just struggling to put one foot in front of another in the darkness, and hoping not to hit any walls. But if you went in, you can come out. You just need to keep moving.

You can check out my essays on healing. They might be one bit of light for your path.

Keep going. You’ll get there.

12

sj2,

I’m sorry to hear about your mom’s illness, and I wish there were some words of advice I could offer. I can only say you have my heartfelt good wishes and prayers. It sounds like your mother has a lot of problems, both physically and mentally. Others have offered sage advice and comfort, and I can only second them. Be strong and be well.

13

There are times in your life when you just have to say, “Fuck It.” Whether for your own self-preservation, or to feel just a tad bit stronger in the end. That’s my advice. You could be hit by a truck tomorrow and all that jazz. Why worry what’s going to happen to you in a few decades. You are young. You were strong enough to get away. Honey, just stay away. Clearly, there is no need for you to further poison your future with this woman.

And, cutie, no matter what people say about the effects of their dying, KNOW that it is what it is your heart that matters. The next time someone says you will regret these feelings when so-and-so is dead, just give them a private f-u in your head and nod sadly. For they have not had the chance to know you or your situation. I wish you the best. Take your vitamins and realize that most people that hear your thoughts are just waiting for a chance to tell their own tales of regret.