Is God Testing Me....Hope I Pass

by SezAnnie
(Staten Island, New York)

My 78 yr. old mother has LBD. She is now the child and I the parent. She had been diagnosed in 2007 w/ depression & dementia, but I knew it was something more. It wasn't just plain dementia and depression as her doctors concluded after a battery of tests that found her physically healthy.

So off they went. Quick to dispense anti-depressants that just seemed to leave her in a catatonic state. She lost huge amounts of weight, lost interest in people and activities and never left her bed. She started repeating herself constantly and always in a state of anxiety. She asks permission to go to the bathroom (that means being asked every hour).

My father couldn't handle it. He ended up having a heart attack in his bed and on his birthday. I was left stepping into his shoes. I was already being challenged as I was going through a very bad divorce and going in and out of both family and supreme court. I have looked up to the heavens and asked God "Is this a test...hope I pass".

I started looking up her symptoms on the internet. I already knew that mental illness ran on her side of the family. Her mother (Alzheimer's disease) and two sisters (severe depression & bipolar). Her symptoms of stiffness of the joints, the Parkinson stare, the shuffling in her walk (I call it the Geisha walk) and constant repeating of questions over and over and over (you feel like your going mad), the mood swings including severe anxiety especially around 5:00 p.m (sun downing they call it) and the increasing aggression. This includes verbal abuse and death threats.

The disease actually had a name. It was called Lewy Body Dementia. A real down spiraling disease that has the same aspects of Parkinson's and Alzheimer's. Sort of a double whammy. It's been three years now and my life has changed yet again. I won in both family court and supreme court, I lost my job due to all the stress, Mom is getting slowly worse. I am now trying to raise my 14 year old son and keep positivity in the home despite my Mom's constant negativity and anxiety.

I am trying to hold on to my sanity as I cannot institutionalize her as my father's estate including the home I am living in is under her
name and that would mean a huge loss. I was not able to put her assets under my name as her estate attorney wanted me to do for reasons I cannot go into. Like I said previously it was a very bad divorce. So, I go about each day doing the best I can not to lose it myself. I manage her medications, take her to doctor appointments, feed her and bath her. Mom and I never really had a good relationship and that makes things harder.

I feel trapped, alone and feel so guilty when I lock the door and run out each day for several hours so I can feel normal. Mom can get so nasty and she constantly complains. She constantly asks the same question over and over and over. When I wake her in the morning she asks for permission to go to the bathroom, permission to get dressed, permission to go downstairs, permission to sit on the sofa.

At this point I'm already thinking of a stiff martini and its far from midday. She puts on every light in the house when I'm not there. She's always in the bathroom obsessing with her dentures. Fixodent and toothpaste are constantly left on the towels and walls. I'm thinking of painting the bathroom pink and white. Hey, it could be worse. She's not incontinent...yet. I haven't dated since the divorce(8 yrs). I don't know if it's because of the trauma of the divorce or because taking care of Mom makes me feel un-date able. Perhaps both.

This disease will eventually leave her in a vegetated state. I pray she passes peacefully in her sleep before that happens. I know she doesn't want to live now because she is so miserable. I know I need to hire a caregiver and go find work again. I'm afraid that I'm so messed up that it will effect any position I get.

The previous caregiver had quit after a year because she claimed she had her own health issues. I knew better, Mom was driving her crazy. So what's a girl to do? Ride it out, hope for the best and prepare for the worst I guess. I am determined to stay strong and not let this beat me. I know there is a another chapter not yet opened in my life.....but first I must pass the test.

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Dear It's Hard by Anonymous
by: Anonymous

It's good to know your not alone, isn't it?. I've learned every situation is different but the bottom line is one cannot expect to sacrifice one's own life, especially at 26 year's old when your suppose to be starting your own.

Yes, my parents sacrificed for me. But, they also had my Grandmother helping them to raise me and I became independent by 9 years old. They were able to enjoy there lives when they weren't working because someone else was taking care of me. When Grandma was diagnosed with Alzheimer's later on, Mom and Dad passed on sharing the responsibility of taking care of her with mom's other younger sister because Dad said it was impossible with them working 5 days a week and coming home at 6pm.

They knew they could've taken Grandma every other weekend but they weren't willing to make that sacrifice. Not when they knew darn well that Mom's sister was already doing most of the care taking.

So now here I am taking care of Mom. I don't know how much longer I can keep it up but I have gone ahead and opened up an Irrevocable Trust to protect the house and some assets. There is a 5 year Medicaid look back and I need to make sure that if I can no longer take care of mom in five years I can have the option of putting her in a proper home without losing the house.

You need to talk to an estate attorney if Mom does has assets to protect them. If there are no assets then you must tell your siblings they must either circulate taking are of mom or she will have to go into a home. Your not deserting her.

A home will make sure that she has other people her age to talk/or complain to. They will have activities to keep her alert. And you will be visiting her routinely. If she has no assets, medicaid will take care of her. Medicaid can also help you get a caretaker for several hours a day at home if she qualifies. You must start now to think of how you can continue your life.

There should be no guilt. Everyone deserves to live their life. If your siblings give you a hassle, they are dead wrong. Period. No one know what it feels like until they walk in your shoes. Start now. Educate yourself around the web about our options and you'll feel better knowing your doing something for your future.

It's Hard
by: Anonymous

Wow, I'm glad I found this page. I'm 26 years old and am the only caregiver for my 60 year old mother. Reading your story makes me feel that I'm not alone on this. It's very hard to deal with a situation like this. I can't even mention that one day soon I'll marry or move out of the house because my mom will have a fit and start crying and calling my other siblings telling them what an ungrateful brat I am.

No one else is responsible for her. They have their own lives to deal with. I've been finding myself resenting my mother for this. Why do I have to stay home all the time. I'm about to go crazy and I feel you when you say you are thinking about a martini before midday. Not like I can take one at home where my mother is constantly watching me.

by: lisamac

Your story is so like mine except my mom had breast cancer at the age of 86. Everything you say is just like my mom.....can't make move, always somethings hurt try to tell her to move around so she could feel better but no go. Her way of thinking is so negative thanks for your post it made feel a little better good luck.....Lisa

Thank you.
by: SezAnnie

Thank you for your kind comments. I am one of millions and growing as we live longer now who are in this sandwich generation.

God's Plan?
by: Anonymous

I can't even imagine what you're going through but you sound like a really strong lady. I hope your son can see what strength and commitment are all about. Good luck to you. Kris

Sounds like my Mom
by: Doug in Newberry fl

This sounds just like my mom. Thanks for the info and will be chatting with her Doctor about it. Mom is now in a nursing home. Trying to get the best care for her. Thanks Doug

The Test...
by: bklynj

You earned extra credit on your test and will graduate with honors, love God

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