Who is She?……. Words From a Neighbor’s Daughter

When I was 10, we moved to Los Alamos, NM. A year later, a family from Argentina moved down the street from us—good old 39th Street. Their eldest daughter, Barbara, was 9 and spoke no English. Her lovely mom, Liliana spoke some English and was incredibly social and vibrant….. naturally, my mom was thrilled to have Spanish speakers living right down the street…………. Barbara and I became fast chums, she learned English in 3 (yes 3, maybe less) months and I learned new Argentine phrases (REY BIEN!!!!!! or CHE!!!!!!!!!!)………. Today, Barbara is a lawyer in Argentina and a mother to a gorgeous little girl. Her mother passed away from cancer.

My mom does not remember the Bolmaro family. Barbara remembers her.

Here are her memories of my mom:

I remember a woman who welcomed us with immense generosity into her life. Who was always smiling and was very polite. Who was amused by my city-kid distrust of people. I remember a woman who helped my mother get a job. Who cared for my grandparents qhen they came to visit, who played “canasta” with us. She was always very kind and generous and I´ll always remember her fondly.

A Series… A Struggle… A Black Hole

I don’t know what it is or why, but I am having a terrible time coping with everything that has happened to me and my family. The last couple of years are maybe now finally hitting me… the move, the end of a six-and-half-year relationship, the disease. When I moved to Phoenix in January, I felt a tremendous amount of relief: I had done it. I was here and ready to help my parents get through this—I wanted to be the hero. I wanted to save my dad and give him peace. I wanted to protect my mom and find her the care that she deserved.3509199828_22e65ca353

Nearly six months later, and I feel like a reactive child. I don’t know who I am. I feel insecure about my life-choices. I cannot say what I want or need to make me happy. I am a disappointment. I feel lost and utterly alone. I am ANGRY. My breaking point came Friday night. Nothing was satisfying me. Not 30 Rock, not a book, not the heat, nothing.

The only thing that came naturally to me were my tears… it was the first time in a very long time that I just balled.

I am finding it increasingly difficult to do anything. I don’t want to do anything. I am completely uninspired. Unfortunately, no one will rescue me. I am my own savior. Fuck. I can’t escape myself no matter how much I want to run away.

You know what’s wrong with you, Miss Whoever-you-are? You’re chicken, you’ve got no guts. You’re afraid to stick out your chin and say, “Okay, life’s a fact, people do fall in love, people do belong to each other, because that’s the only chance anybody’s got for real happiness.” You call yourself a free spirit, a “wild thing,” and you’re terrified somebody’s gonna stick you in a cage. Well baby, you’re already in that cage. You built it yourself. And it’s not bounded in the west by Tulip, Texas, or in the east by Somali-land. It’s wherever you go. Because no matter where you run, you just end up running into yourself. ~ Paul Varjack,
Breakfast at Tiffany’s:

I keep running into myself no matter what I do. I need to be alone. I know it’s selfish and terrible, but I can’t do more for her (or anyone else) if I can get my head on straight.

2650112070_4d7f89da05I am tired.

I am angry.

Reactive.

Illogical.

My actions and inability to feel in control makes me want to puke in my mouth.

I hate not feeling in charge of my life.

I am being driven to the brink by a disease whose face resembles my own mom’s.

How do you reconcile that love and that hate?

Who is she?

I don’t remember much of my mom before her disease took over her mind and body. I have been asking friend’s to tell me who she is and what she was like. This is my new series: “Who Is She?”

Below, my girlfriend Chanette from high school (now a mom and wife) shares her memories of my the woman I call mom:

“I will always remember Kathy’s mom as the devoted Catholic who was sweet, soft spoken and cared for others. As teenagers I loved to go over to Kathy’s house because it was so different from the environment that I lived in. I had 5 brothers and sisters and never any “quiet” time. Going over to Kathy’s house was like going to Disneyland for me. I always envied that she was an only child who received her parents undivided attention, had her own room and all the “quiet time” that her little heart desired! Whenever I would be over at Kathy’s house studying or even just hanging out her mom would “stop by” wherever we were to see if we needed anything to drink or eat. Like any teenage daughter Kathy would grumble that we were fine and busy. Kathy’s mom seemed to take no offense to her teen daughter’s response and would come back by 15 minutes later to ask the same thing. I thought, “Wow, you are so lucky to have a mom who dotes on you like that.”

Not saying my mother was any less. The fact was that my mother had five other kids vying for her attention besides me and so no one got the doting that most only children receive. None the less, I was envious of Kathy at the time.

To me, Kathy’s parents were always so different in their personalities. Her father was more of the quiet, reserved type that I was always afraid of disturbing when I was in their home visiting. Whereas her mother just made you feel welcome from the time that you set foot into their home. She was a very open and warm hearted woman who made you feel comfortable. Always asking me how my family was and how school was going showed me how much she cared. My grandmother attends the same church as Kathy’s mother and was on the prayer line with her for several years. When I asked my grandmother what she remembered about Kathy’s mother the first thing she said was “she always had a smile on her face and was friendly to everyone she met.”

As I have grown into an adult I have learned to appreciate my large family for what they are and what they provide me with, a huge support system. Yes, I never had my own room growing up and yes, there was never a quiet moment in our house other than the middle of the night. But if my mother was diagnosed with dementia or any other disease I would not have to deal with it by myself. It saddens me to see Kathy going through this alone. She has no one else other than her father to share the heartache of losing her mother emotionally with, which I know is hard for her. Hopefully one day, Kathy will remember the wonderful woman that her mother once was and all of the good times that she shared with her.”

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>>Caged: http://www.flickr.com/photos/36041246@N00/

>>klaus kinski saviour III: http://www.flickr.com/photos/annamalina/

Tips from the Others

Yes, it has been a while since my last entry, but for good reason… well, you know, it’s a balancing act and I am sorry. But here’s the skinny on me and my demented mom: I was settling into life in Phoenix, starting a new job and working to get my mom access to Arizona’s version of Medicaid, otherwise known as ALTCS. The good news: we got it and will soon have more help! Thank you Larry Shafer!

A huge relief for my dad and I — he was reaching his breaking point, it was so painfully clear. He suffers from the effects of caregiving… as most caregivers do: sadness, shaky hands, more gray hairs. This disease destroys many lives. I mostly struggle with my emotional detachment from my this demented woman. I am trying. I try to think about the fact that my time is limited. I try to hug her and hold her hands. My mom has her moments. They seem to be getting worse. Her challenging behavior tests my patience and I struggle to hold my tongue. I hate that part. I hate being that person and becoming cross with her because she can’t help it.

That said…

One thing I’ve learned about coping with this disease is that you need help — and a bottle of wine. I’ve asked some of my friends to give me their tips for coping with a demented parent. Out of respect, I won’t name names, but I hope you find these bits of wisdom to be helpful — and of course, if you have any nuggets of information you’d like to share please post a comment!

>Immediately make sure that their belongings are in a trust or in your name. That way Medicare & Medicaid can’t take it from you/them. See an elder care lawyer. Find out what you can do together with the person while they can still make some decisions. Massachusetts has a 5 year law. Some are only 3.

>I wish my mom had gotten into a support group for herself. Not really her thing, but I wish she had.

>I wish I had not been in so much denial myself. I did a lot of “Well that is so far off”, “My mom isn’t like that”, “She is fine and will be for a long time”. Now I feel like I am under the gun. I didn’t deal with the future for her. I just led my life as if I only had a short amount of time to live and in a way everything suffered. I put pressure on my career and relationships because I needed them to be secure before my mom got bad and in the end I think I appeared desperate (because without realizing it I was) and that is never attractive to anyone, be that a relationship or an employer

>Figure out all the stake-holders- everyone that could help out, get in the way, or try to help out but end up getting in the way.

>Figure out a good candidate for Power of Attorney as early as possible, and make sure that the people in #1 are cool with #2.

>Go see an elder care lawyer. This is not something that most people are equipped to do, and is generally worth the expense. Assets require protection, and an elder care lawyer is generally prepared with many shelters to help make the transition to Medicare easier.

>Seek care for yourself, either in the form of a support group, or therapy, or both, but you covered that.

>Start coordinating your loved one’s life in such a way that he/she no longer needs a car. The sooner this happens, the safer everyone is.

>Start EARLY on baby-proofing your loved-one’s living area. Anything endangering to him/her or others needs to be gotten out of there BEFORE he/she is in a state where it really becomes an issue. This is a lengthy, unhappy process, but well worth it.

Thanks guys. You’re amazing and I miss you!

The Tragic Toll…

Caregivers of Spouses with Dementia Enjoy Life Less.

ScienceDaily: Spouses of husbands and wives with dementia pay an emotional toll as they care for their ailing spouse. This has prompted a call for new interventions and strategies

Caregivers Of Spouses With Dementia Enjoy Life Less

to assist caregivers in coping with the demands of this difficult time, according to a study from Case Western Reserve University’s Mandel School of Applied Social Sciences.

I rarely write about my dad. I think for him, the weight of caring for my mom and watching her deteriorate takes a toll on a daily basis. It’s easy to judge other people for their inability to cope the way you’d like them to. Thing is, you can’t. Unless you’ve watched your partner go from wife to child, it’s impossible to say how you’d feel, let alone react. My dad and I struggle to stay emotionally afloat. I love my dad so much and it’s devastating as his child to see him have to go through this when my folks should be enjoying their golden years.

Although My Demented Mom is aimed at young adult children of demented parents, I think you have to remember that in many cases, it’s the spouse who also pays dearly. I know for me, it’s tough to support your other healthy parent when you’re in your own dark pit. So, here’s where it’s up to friends and other family to step in and lend a shoulder to cry on.

Dementia does NOT affect just one individual, it affects everyone around us. Just ask my friends.