Out of the Blue

Oh, boy. 

It has been a while since I have posted. I've realized that I cannot write when I am 'in the process.' I need time and space to heal, reflect and finally accept. 

Just after my last post in July of 2012, my mother stopped being able to walk and was fitted for a wheelchair.  

I started to recover from that in about November, but then she stopped being able to eat or chew solid food. 

I started to recover from that in February, but then she started sobbing (lucidly) every time she was bathed. 

I stared to recover from that in April, but then she stopped being able to speak. 

I started to recover from that in June, but then she started drooling (and not being able to move the saliva in her mouth). 

I stared to recover from that in July, and then he started having problems swallowing pureed food.

It's heartwrechingly painful. All my cries, all my sobs, do nothing to stop this gutwrenching disease from taking over my mother. She is shrinking like a jawbreaker. Slowly and evenly way all the way, layer by layer down through to her core.

Her disease is relentless. It is like a truck that plows through your house without mercy, breaking, shredding and tearing everything up until there is just a path of destruction in its wake.

I pick up what is left, and dust myself off.

So, what is left?  

Sometimes there is a little smile here and there. Sometimes she will reach for my necklace or bracelet and try to form a word, "Wh" - she will get out. Then she will lose her concentration. I know she is asking "where did you get this?" I tell her who it's from.  

But every time, multiple times (no joke - over 25 times per visit) she will reach out and pull whatever she can get her hands on, my hair, my jacket, my cheek to get my face close enough to hers so she can kiss me. 

And this little gesture means everything. I just kiss her over, and over, and over and over again. I smother myself in the love she has for me, and try to hold onto the moment of bliss.  

I know it won't be long before the truck is back taking that away too. 

PS: She is much, MUCH happier to see me than she appears in this photo! 

Leave me alone or I’ll bite you!

These are the words my mother repeated screaming over and over again when I visited last week. 

I had taken her for a pedicure and brought her home later in the afternoon. I was nearly out the door of the Villa when I realized I still had her socks in my purse. All her clothing is name tagged, and I didn’t want her to be without socks. So I went back to her room to drop them off.  

This is where I heard my mother screaming from the bathroom, the door was slightly ajar. Two care aides on either side of her, one holding her hands firmly in their grip, the other gently (but quickly) cleaning her with a warm cloth. 

When I kneeled on the floor in the bathroom in front of her, my mom’s face immediately calmed. It changed from angry to accepting. I reassured her they were keeping her clean, and she would be in bed shortly. I rubbed her very small, and very soft hands. I helped put her with her nighty, and then helped get her into bed.

When my mother was screaming at the care aides, they were cleaning her for the evening. Washing her off, applying lotion (so her skin doesn’t crack), putting on her nightgown, brushing her teeth. All good things - things she needs done. 

I am the first to admit, my mother receives extraordinary care at the Villa. I would almost venture to say it is one of the best facilities in the province. I know each of the care aides - and I like them all. Many of them have been there for years (one has been there for 12). I see them on a regular basis, I hear about them from other families. I know they are the best of the best, and treat all the residents with care, dignity, love and respect. I truly have no doubt about this. 

Still, for the past week I have been upset about it. I am still trying to work through how I feel.

My mother trusts that I would never do her harm, or put her in a harmful situation. For this am I grateful. But I am tormented over what happens during the nightly cleaning routine. Does my mom get this upset every night? Then is the cleaning that necessary? Is this just the way of facilities (even great ones?). I can imagine everyone needs to be cleaned - but at what cost? All the studies I have read have said try not to upset persons with Alzheimer's Dementia.

I never want to see my mom upset. It makes me want to be there every night to put her to bed, but obviously I can't. 

How do I accept that she gets this upset ever night? The thought breaks my heart. If you have any personal experience with this issue, please share it with me. I am looking for ways to get through this. 

Sex Drive ~ Part 6: Meet John (the conclusion)

My mother has given me a grocery list of the most extraordinary kind.

You’re never going to believe what I need you to help me with. I yell out to Kristina “Okay, she's says laughing - but we need to make sure the guy is bonded”  

I look through the Yellow Pages for a company. “Hi, this is a strange request, I'm calling on behalf of my mother, she would like a man.” “Oh sweetie” the woman says, “I get calls like this all the time...” And somehow, the woman at the male escort service has made me feel better. 

I tell the woman I will call her back.  I want to make sure this is really what my mom wants.

A few days later:

“I don’t want sex with a man I don't know,” my mom says.

Immediately I'm relieved. She has come to her senses, she knows it was a crazy idea. I feel a sense of happiness, my mother is back. “I want a man who I can have coffee with, go to the movies, have dinner and have sex!”

My mother has just decided now, after an Alzheimer's diagnosis, is the right time for a relationship. And somehow I’m the one that is supposed find this for her. Suddenly finding a sex partner seems much easier. People have sex for the sake of sex, or payment. How am I supposed to find a man who wants to take on a newly diagnosed partner with Alzheimer's/Dementia?

Impossible.  

A few days later I decide I have to believe anything is possible, so I put an ad on Craig's List:

"Daughter looking for partner for her mother: someone to have coffee with, someone to go to the theater, do 'things' daughters shouldn’t know about. I also say, she has memory loss." 

I receive 16 replies in 24 hours. I was not only shocked, but a little saddened by the amount of lonely people in the world. 

Nearly all of them said "who doesn't have memory loss? One man in particular John I liked a lot. He seemed warm and genuine. He had three grown children and was looking for someone to spend time with. In his picture he looked handsome and was into politics - just like my mother. After a few phone conversations, I set my mom and John up on a date to go for ice cream. 

After the date my mom (and her driver) met me for lunch.  I was very excited to hear how it had gone. So, mom, how was your date? “He’s too old for me!" she said. What? He's 5 years older! He's to old for me she repeated. I can't believe it. Lady, you have Alzheimer's... maybe we can make a few concessions here?

A few hours later I get a call from John. He had enjoyed her company. He thought she was beautiful, smart, and loved her enthusiasm. He would like to see her again. I asked my mom again. No was the answer. 

John called me a few times that summer hoping to see my mother, and even sent a post card later in the summer. 

There was no changing my mother's mind. 

What I realized months later, was that by the time my mom met with John, her medications had kicked in. The medications help to manage these erratic/abnormal behaviors. Alzheimer's medications take months to establish as the doctor slowly increase the doses to ensure the patient can handle the increase. It actually hadn't been my mother on a crazy-sex-drive-kick. It had been a woman with Alzheimer's who's inhibitions/real personality had been altered by a progressive disease. 

The real point I am trying to make here with this story - is how important it is to have an accurate diagnosis. This has to be done (especially important in the early stages) in order to obtain accurate medication. Once my mother's medications were adjusted in her system, she became normal again (for a period of time). I remember her even telling me that she felt better, she felt clearer in her mind. And the sex stuff - gone, never to come back. It really hadn't been my mother. It had been the disease. 

Sex Drive Part 5 - Deliberation

Over the next few weeks as I struggle with constant thoughts about what I should and should not do for my mother. It keeps me up at night. Through this period she continually asks me to find her a man to have sex with. I wondered if it would ever end. Even though I knew the diagnosis was Alzheimer’s, otherwise my mother was still functioning (and living on her own). When I looked at her I saw my mom, not someone who was ill.

The requests feel real, and I am tormented with what to do. 

One afternoon as I contemplated the possibilities, I remembered a story she had told me about the day her mother died. As my Granny lay dying in her hospital bed she had asked my mother to brush her hair - my mother said no telling my Granny she didn’t need it done. After my Granny died my mother had been plagued with guilt. "Why didn’t I just brush her hair? Who was I to judge what she needed or didn’t need?" she would say to me. I knew she was ravaged by guilt and regret. "It was a simple request which would have made her feel good, I should have done it.” 

Was finding my mother a man the same kind of request? Was it my place to decide what was good for her, or what she needed? Was I crazy to even be contemplating the request? The question then became, was my mother's request as simple as brushing my Granny’s hair? And more importantly, would I feel guilty for not doing it? 

I decide - I could not judge.

It was not my place to decide what was good for her, and what was not (and truth be told, even though I didn't want to think about it for a second, I couldn't imagine it wouldn't be pleasurable...). And so I decided that if my mom’s request was for me to find her a man -  that's what I was going to do.

Now, how exactly was I going to go about finding a man for my mom...

To be continued in Part 6 - Finding a man for my mom 

Sex Drive ~ part 3 ~ the drive continues

For the next few weeks, I slide into a bubble of denial and try to pretend nothing is wrong. It had only been just over a year and a half since I had moved back to Vancouver. 

I wanted to be closer to my mother. I had left in my mid-twenties trying to get as far away from her as I could (I made it as far as Edmonton, and then I came back to visit every 6 weeks). It seems the further I went the better and stronger our relationship became. The only child, my mother had always wanted more of me than I could give. I wanted to be out with friends traveling and living life, she wanted me to be hanging out with her. After I moved away she began to live her own life. By my early 30’s I had made it as far as Toronto, but I wanted to move home. Our relationship had grown strong and I was now my own person. I didn’t want to miss any more time with her as she entered her 60's. 

A few Sunday’s later I call as I am on my way over for breakfast, can I bring anything, I’m on my way over? Yes, my mom says, "a man".  

I lose it. “Listen Mom” I say in anger, “I’m not finding you a man, okay? It is not my job to get you a man!,” I yell in my car. “Tricia, I want you to find me a man!” “Mom, who do you think I am? Do you think I have hanging out of my pockets? What do you think - that I have a catalog full of men to choose from?” I scream so loud I almost lose my voice (and feel instantly bad about it - but I DO like the idea of a catalog full of men ;-). Almost without hesitation she says: “Can you bring the catalog when you come for breakfast?” I shake my head in disbelief.

You have got to be kidding? I have enough on my plate without worrying about trying to get my mother laid. I’m grieving, working full-time, and in the middle of a major renovation on my house. More importantly, I am trying to get her a more specific diagnosis. The hope is that I can get her stabilized on medication to reduce and slow down the progress of the Alzheimer's. This means more doctors, specialists and tests. All my mom wants is for me to find her a man? Fuck, this is unbelievable. 

Except for Kristina and a few other close friends, I'm to embarrassed to tell anyone what's happening. 

To be continued in part 4...