Over the past few weeks, there have been a few developments. My housemate probably has Lewy Body Dementia. Basically, in a nutshell, that means she ain't comin' home. Ever.
Each day is a new day for her. She doesn't remember her visitors or activities from the day before. Sometimes when she's prompted, she can remember snippets from previous days. Mostly she sits on the bed with her cell phone in hand, calling her son to "bring me home" or making random calls, giving the details of her latest trip to Lewy Land.
5.14 AM - "I want to come home. Why can't I come home?"
6.17 AM - "The sheriffs are holding me here. They are at the door and there's a big man standing in my doorway. I'm being kept hostage. You need to come and get me." (This means she tried to bolt and the nursing facility staff is trying to keep her from doing it again.)
6.30 AM - "I'm at the apartments across the street. Near the filling station. Can you bring the car and get me? I'll wait about ten minutes. I hope you get this message." (This is a complete fantasy. She is at the nursing facility.)
7.00 AM - "I tried to get out the back door but there's a pack of dogs out there. They're growling and I'm afraid to open the door. I'm desperate, honey." (There are no dogs.)
This was just the beginning of the day. This goes on all day. Every day. Her son gets the bulk of the calls.
Since she is considered a "flight risk", we will be transferring her to a more secure facility next week.
One of the most painful things to hear is that she believes God is punishing her. She continually asks "what did I do wrong?" or "what do I have to do to get out? How much time do I have to do?" She has the belief that she is serving a sentence. She believes the neurologist has sentenced her to time because she missed some questions during last week's visit. That is her perception of her confinement.
It's a difficult question to deal with. Why do these things happen? Certainly she did nothing "wrong" and she's not "serving time", although I know it feels that way to her.
God punishing her? No.
But how do you explain to someone in that condition that we live in a random and chaotic universe? Sh*t happens. There's no adequate explanation. There's no scientific explanation and there's certainly no dialectic explanation.
How to be comforting and reassuring becomes especially challenging when there's no concretes to offer. She has a horrible disease, a progressive disease, and she will die in a nursing facility.
I, of all people, have no answers.
Saturday, February 27, 2010
Saturday, February 06, 2010
Chris at Enchanted Oak has offered to give $2.00 to Haiti Relief for each person who is willing to post some simple pleasures. If you are interested in participating in this challenge, share some simple pleasures on your blog this weekend, link to Chris's blog.
Given my status lately, it's a good reminder to sit and think of a few things that make me happy, simple things that restore and refresh me.
Here are a few:
1. Going to my favorite consignment shop ~ Renaissance ~ and spending a few dollars on definitely unneeded but fun clothes.
2. A quiet cup of coffee at Starbucks in the morning after a walk, especially in the fog.
3. Good food! Weight Watchers or not, I still love to chow down.
4. A good book! A book that takes me to another world, another place, getting to know people I'd never know otherwise.
5. Getting my hair done at Bravissimo. It's definitely a little pricey but always makes me feel good.
6. Rings. I love rings and have dozens.
7. Rose gardens, creating or looking
8. A cup of something hot in the evenings, reading in my recliner with some soft music in the background.
9. The guilty pleasure of listening to Pink in the car, maybe just a bit too loud, which definitely makes me a Stupid Girl.
10. Certain ringtones on my phone - because it means a friend is calling.
Friday, February 05, 2010
First of all, I want to apologize for my lack of attentiveness. It's okay if you roll your eyes. I've done the same thing when people say that. The truth is that my energy is at about 30% and very little of that has been expended on things I care about - such as reading blogs, reading books or even leisurely watching TV. While all the things I've been doing are necessary, they're also challenging most of my personal limitations, physically and mentally.
Not to say I won't be okay because I will. In comparison to my housemate's troubles, I have little room to complain - if any at all.
She is still in the nursing facility. The Cliff Notes are that she has been declared incompetent and is no longer able to make her own decisions. Her family has been brought in and those dynamics are coming into play. Her sister from Southern California has decided I am the spawn of the devil since I have asked to be paid for my services and has removed me from all ability to help in any substantial ways. I am not allowed to have information about her case from the nursing staff. If she could ban me from the premises, she probably would. I've gone from Golden Girl to goat in two days flat. Since she has Power of Attorney, I can't even make a suggestion. The staff can't even take information from me, let alone give it. The fact that I have had my boots on the ground for the past four years holds no significance. The Sister From Hell and I no longer speak and have no reason to do so in the future.
Her son is here, also from SoCal, and she has cut him off as well. The reasons for this are basically a power struggle. He also can't make any decisions. Luckily, after sweet-talking her, he can get information which he gives me and we discuss possibilities among ourselves. The discussions he has with his siblings are none of my business and I don't really care - but someone in the family needs to see all of these changes in context. If I can give that to him, that's good enough.
The sister's opinion is that I have no right to be paid because I am a "friend". I guess a friend, in her mind, should sacrifice his or her entire existence to care for her sister with no expectation of reciprocity. Of course this makes me angry and I have questioned my ethics on this every way there is. I have talked with trusted friends and even my spiritual advisor to think this through. I have determined that my asking for financial compensation is ethically clear.
I don't see any other "friends" of hers stepping up to the plate. I am there with her at the minimum, three hours a day. I go with her to physical therapy. I have lunch with her. Since she has little sense of time, she gets lonely very quickly and needs the visitors she has. Her two sons and her daughter visit her daily as well. They all have full lives and this is taxing them as well. We're doing the best we can. My housemate trusts me and knows I will always tell her the truth. That's not going to change. The rest of them have their own unique relationship with her and deal with things the way they think is best.
So that's my m-bitch for the day.
As for her, we got the report from the neurologist and he diagnosed early stage Alzheimers. Needless to say, she is not going to be able to come home without full-time caretaking which the family will have to work out and likely pay for. The insurance morass in this saga is something I won't even go into at this point but I'll say there's never been a stronger argument in my mind for national health care. This isn't a time to have to be worried about money. It sucks for her family, none of whom are independently wealthy.
When her son and I told her the results of the test, of course she began to cry. It's a hard pill to swallow and she's not someone who reads a lot or even talks about these things. She's scared to death, rightfully so. We've had a lot of talks about doors closing and her choice to open new ones. We've had talks about accepting limitations and creating a life within them. As a disabled person, I've had to do that. Everyone does. Eventually. As the saying goes, none of us get out of this life alive.
Seriously though, putting myself in her position, I can only imagine the hell she is experiencing in her quiet moments. I wish her grace, peace and acceptance - the kind that only something divine can offer her. We human beings are so limited in our wisdom and our ability to make horrific things right - or to even make them kind of okay. Sometimes life just sucks.
Thanks to all of you for hanging in with me, even though I am so notably unresponsive right now.