06.28.09
Posted in Alzheimer's at 5:54 pm by Karen
Mama is taking some very interesting trips in her mind lately….I wrote about the anesthesia-induced ones…then she had some pretty clear days…but lately….
The other day she was over here, we had lunch, she went to her favorite chair in my den, and started cat-napping. 30 minutes later, she woke up, and just KNEW she had been on a train trip to Dallas. We had some very interesting discussions about it (over and over and over again)….and I told her that in MY reality….she had been napping, but that in HER reality, I didn’t doubt at all that she had been on this trip. I mentioned time travel, I mentioned alternate realities….and I’m not really kidding. Who’s to say that MY reality is the “correct” one, and that her’s is the “demented” one? It was VERY real to her.
Yesterday’s trips weren’t so much fun. She has her lunch, and oohed and aahed over the lox and bagels, then sat in her napping chair, and then the weirdness started.
I was really tired….so I suggested that we BOTH take a nap…..and every time I was just about asleep, or maybe had just fallen asleep, she blurted out a comment….”are you going to be able to get us back to where we came from?” …..”uh….yes”…..OK, then she seemed to calm down….until
45 seconds later….”is Auntie Faye going to know where to go, to be with us?”….oy vey…Auntie Faye who’s been dead for 30 years?…..”uh….yes” “are you SURE???”…..”uh…..yes, I’m sure”….
“and WHO ARE YOU???” She actually said that to me. I was stunned. I mean, I write about this, I talk about it, I comfort others who are there, or have been there….but MY Mama has ALWAYS known who I was….she’s ALWAYS known my PHONE NUMBER, for heaven’s sake……I am HER PERSON….she relies on me…..she LIVES for my calls, for my visits…..”WHO ARE YOU”???? Holy Crap.
I realize that I haven’t been getting those calls for a few days. None. I just called her a few minutes ago, it’s 9am already…..and she did her normal “Karen….thank GOD I’m talking to you….I don’t know where I am…or why I’m here” thing….but I realize that SHE hasn’t called me in days.
There was a time when I would have sworn the happiest day of my life would be when she forgot my phone number. Now, I’m not so sure.
My brother the doctor will be in town next week….I’m off to FL to work for 10 days (with a few days off in between). I have asked that he and my sister go and look at the “next step” facilities that are available for her. Don’t know if that will happen. Don’t know if it SHOULD happen….cause in truth, I AM her person….and will be, even when she doesn’t have a clue who in the world I am.
I’ve been calling myself her “cruise director” for years now….in charge of finding her visitors, sitters, companions, doctors, etc. etc. I see that I am not equipped to handle this job for much longer.
WANTED: NEW CRUISE DIRECTOR….OF THE HEAVENLY VARIETY….please make sure that her “mind trips” are peaceful, happy trips….ones where she is surrounded by loved ones, and laughter.
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06.19.09
Posted in Alzheimer's at 4:00 pm by Karen
I was giving a friend an overview of my last several days….Mama in tremendous pain, us not being able to figure out why…seeing an array of doctors….getting a pain med to help her which ended up putting her in the emergency room…..finally discovering a bowel impaction, after she received the knock-out juice for the sigmoidoscopy which they could NOT perform because of the bowel impaction….which if the DOCTOR had talked with the NURSES who tried to give her an enema but couldn’t, he would have known that he wouldn’t be able to get his scope up there, either, and she wouldn’t have gotten the UNNECESSARY anesthesia. Trust me….a 93 year old person with dementia does NOT need anesthesia…especially when there was no need for it in the first place.
ANGRY? yes, I am. FRUSTRATED, yes I am. The good news is….Mama is back to her “normal” confusion. The bad news was….two days ago, she thought I was her HUSBAND. I was helping her put her bra on in the hospital, getting ready to take her home, and I said “I wonder what it’s like to have big boobs? I guess I’ll never know!” And she laughed and said…”Well, MEN don’t have boobs, silly!”
Woah. That was followed by 7 hours of endless, Groundhog Day questions….she asked where my Daddy was about 25 times….my Daddy who has been dead for 4 years….and I was stupid enough to tell her that he was dead, over and over and over again….instead of saying…”well….he’s over at Bonnie’s” or “he’s out of town”. I’ll never do that again.
At any rate, I was telling my friend about the bra story….my friend whose parents are quite young and quite healthy and living in Texas….my friend who has no children and is about to travel the world with her new love….my friend who has not one care or responsibility in the world….and she started LAUGHING….uproariously. I was speechless. Then I got a lecture on how I was allowed to have a sense of humor through all of this, and come on, it was pretty funny, right?
I’d have to say….no. My precious husband cried with me when I told him that Mama thought I was her husband. My best friend who Mama-sits often cried with me. If YOU are going through this and we share a hug or some tears, perhaps we might find a small chuckle, together. But if you’re not in this club, the one that we so wish we weren’t members of, please know that this is really no laughing matter.
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06.10.09
Posted in Alzheimer's at 3:52 pm by Karen
Yesterday, my Mama, the once VERY vain, never leave the house without a full face of makeup Molly Berke, was on her way to the dining room at her assisted living place….in her pajamas.
This is new. Then, I had her over at my house for the afternoon, and she could not get up off of the toilet. This is new, too. Yesterday morning, she called me at 7:30 and said “Karen…you have to buy me some Kotex! I don’t have any! I’ve been bleeding for 3 days!”
I was on my way up to the gym, to attend my first weight class in 2 months….I had an injury and have been waiting to be strong enough to go back. I almost turned the car around….then thought of another plan. I called the nurses…asked them to go check on her….and they did. There was NO blood.
I went to my class….and felt strong enough to handle anything afterwards. A very good example of our need to “put OUR oxygen masks on FIRST”, which I speak/sing about to others. Musician….heal thyself!
We’re going to the doctor today…I’m afraid that what we’ve all been attributing to “hemorrhoids”, may be much worse. She has so many pains and aches….it’s hard to know what’s real, and what is not. That’s the tricky part.
And then I ask….is it really “worse”? Maybe it would be a blessing, if her sweet 93 year old body just gave out, before her confused 93 year old demented brain does.
And guess what? I have NO power over this. None. No matter HOW strong I am. And the truth is, I don’t feel very strong at all when it comes to this. So I’ll just keep praying….and crying….and writing these blogs……in my pajamas. In my dining room.
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06.04.09
Posted in Alzheimer's at 3:36 pm by Karen
I talk about change….I write about change….I sing about change….”Life’s about changing, nothing ever stays the same….” a line from my Grammy-nominated song. Wow. I’m so smart…so insightful. Wouldn’t you think that the person who wrote that would know it was coming? That she would be accepting?
Wrong. I guess I thought that Mama would always be right down the street in her assisted living apartment, and we wouldn’t have to go through the gut-wrenching move thing ever again. But I can feel it……she’s starting to be “too much trouble” over there….the other residents hate it when somebody starts to show their dementia too much…..you can almost see them backing away….as if it were contagious. And the nurses and aides….as sweet and wonderful as they are….I know that they’re spending a LOT more time calming my Mama down….helping her out….than they spend with the other residents. At some point….it’s going to be time for a change. And I hate it. And I’m scared.
I’ve started making the calls….I think the “memory unit” connected to where she lives now is nothing more than a lock box tacked onto the end of the building. I don’t think they have a clue. There’s another place way across town…about 45 minutes from me….where they DO have a clue…and it’s expensive, and I’m worried about how long her money is going to last, and they don’t take Medicaid.
Dear God. This is really heavy stuff, and I can’t believe that I am having to deal with it all…I’m the freaking BABY of the family. Some baby. Why isn’t my older brother, the wise psychiatrist, dealing with this? Oh yeah…..my Mom and Dad went to live with him in New Mexico about 10 years ago and it lasted 8 months. oops. Where’s my older sister? Across town….oddly enough, very close to the new place where she might go. Wonder if she’ll visit more than the once a month she now shows up. Also very close to my niece who hasn’t seen Mama in 3 years, because “I’m selfish”. OK…back to my “Forgiveness” work. I know everybody’s doing the best that they can, blah blah blah. “God, grant me the serenity to accept the things I cannot change”….there needs to be a SPECIAL prayer for those of us dealing with dementia and Alzheimer’s. “God…keep me sane in the midst of this seeming insanity”…not bad for a start.
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