05.25.09
Posted in Alzheimer's at 2:30 pm by Karen
Wow. I got a call yesterday morning….at 1:15AM. I was fast asleep. My Mama was so upset. “Karen…what am I going to do? I woke up and my pajamas are all wet. I don’t know what happened. I have them soaking in the sink, but what will I do with them?”
“Mama….don’t worry. I’ll get them later and take them home to wash them. Can you go back to sleep now?” “Back to bed? I got dressed! Isn’t it day time?”
“No Mama…it’s the middle of the night. Can you go back to sleep?” “Oh my God….well, OK…I guess I’ll sleep in my chair.”
More calming down on my part….then of course I couldn’t get back to sleep. I was picturing the end of assisted living…..diapers…..no bladder control….nursing home…..wondering how to deal with her wet bed.
I was there by 7:15, expecting the worst. I walked in to find Patsy the aide in there with Mama….having a normal morning….her bed was made….there were NO wet pajamas in the sink, or hanging up in the shower….they were bone dry…as was the bed.
Huh?
Mama and I talked, and she told me that she had a bad night, filled with bad dreams. I asked her if some of them were about wet pajamas in the sink? Nope!
Lucky for me, my husband ALSO heard my phone ring at 1:15 and listened to my end of the conversation, or I’d be questioning MY sanity!
So is dementia just a dream state? An alternate reality? A parallel Universe?
No answers. Lots of questions. I can only wish my Mama “sweet dreams” with a lot more conviction now.
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05.22.09
Posted in Alzheimer's at 3:05 pm by Karen
It’s been a while since I’ve written here…..and I’ve missed it. It’s very good therapy. It’s 6:45am, and I just got my morning call from Mama….”Karen, I don’t know who I am, or where I am, or why I’m here, and I’m so scared.” “Mama….can I tell you something? I promise, your mind will clear up in a little while, and you’ll remember that you’re at NHC Place, where you’ve been for 4 years.” “I’ve been here for FOUR YEARS?? But who pays my rent, and can I afford to live here?”
This is where I have to do a little acting. “You and Daddy saved a lot of money and yes, you can afford to live there, you’re fine.” This used to be very true of course…..4 years ago, and before the stock market took a dive. The truth is, there is now enough of my Mom and Dad’s money to last about another year and a half, if things go the way they’re going now.
This is a real test for me…..do I succumb to the ways of my upbringing….where you go into fear and panic mode and assume the worst?? I always feel myself start to slide down that path….it comes so naturally! AND, the truth is….I’ve spent years learning another path….a much healthier path! So I’ll share my favorite affirmation here….”Unlimited blessings come to me from unexpected sources, clear and free….effortless and easily, here and now.” And I’ll keep writing those wonderful songs, and I’ll continue to pay my wonderful songpluggers, and I’ll keep buying my lottery ticket….and I trust that should my Mama outlive her money, which I fully expect, that I will be able to take excellent care of her, and my family as well!! And sometimes, when those boogie men come calling, in the form of fear and negativity, I will drown those suckers out with my affirmations…..and an occasional Margarita, which I have found to be extremely helpful as well!!
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02.16.09
Posted in Alzheimer's at 6:35 pm by Karen
Well…..I thought I would try this out of town trip differently. What I’ve been doing is….lying. I’ve called my Mom from airports, and I’m nervously covering up the mouthpiece as they BLARE the outgoing flight information and I’m telling her that I’m in Nashville, in a studio downtown, recording.
But she gets so agitated when I’m gone. A therapist told me that lying to our Alzheimer’s/dementia loved ones is quite common….even has a name….”therapeutic lying”. However, we’re going to be gone for 2 1/2 weeks this time. I decided to call upon my Mama’s strength….her strong sense of “mothering” that kicks in when I’m sick. Yesterday, we had a long talk about how I’ll be leaving, in 5 days, for a rather long trip, and that I really needed her to be strong….to not fall apart….to support me in going, because that’s how I earn my living, and we really need the income right now….that her assisted living staff was there 24/7, that I had a slew of friends and family on board to call her, go visit her, etc. etc.
She was GREAT. In that moment, she was truly the Molly Berke of old. “Of course you have to go. Of course I suppport you. I’ll be fine.”
And of course, 10 minutes later, it all turned to panic. “You’re leaving TOMORROW? You’ll be gone for HOW LONG?” And no matter how many times I’ve told her in the last 18 hours that I”m not leaving for 5 more days, she’s convinced that I’ve left already, and she’s horribly sad.
I keep wanting her to be who she WAS, and I want to have a strong, secure Mama who can add to MY peace of mind by assuring me that she’ll be fine without me. And it just ain’t so, and it ain’t gonna happen…….and THAT’S the TRUTH. But Truth need not be told, in Dementia-land.
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02.10.09
Posted in Alzheimer's at 6:00 am by Karen
OK, I admit, I made myself a teeny weeny drink, even though it was only 12:00 noon. I don’t drink much, really I don’t….but taking my Mama shoe shopping would test the patience and sobriety of a saint, I swear.
First of all….we need to have these little pre-printed cards to hand people….like salespeople…and new doctors, nurses, etc. The cards would say….”This lovely elderly woman is going to seem to you like a perfectly ‘normal’, sharp lady….for a while. Do not be fooled. It’s gonna get really crazy. You really need to ask HER the questions, or she’ll get mad….but then allow ME to answer all of the questions so you’ll get the true picture of what’s going on. Prepare to repeat yourself. Often.”
How are these shoes Mama? Awful. OK, how about these, pair #2? Terrible. But how about these Karen (she points to pair #1). Well, those were awful. What? I never tried them on! Back to pair #1. These are awful. But how about these…..pair #2? Uh…..you just tried them on and hated them.
What? I’ve never seen these! I’m going to try them on!!
And this happens over and over and over….inbetween our trips to the bathroom because Mama’s getting very nervous…..Wait Karen….what about these? Heels? Mama, you don’t wear heels!
Well I most certainly DO! Dear God….bring on the whiskey!!
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02.04.09
Posted in Alzheimer's at 4:24 pm by Karen
Can you imagine waking up in the morning and not knowing what the hell was going on? Wondering how you pay your rent? Worrying that “they are going to come in and kick you out”. Holy cow.
My poor sweet Mama. So many mornings she’s lost like this. This morning she called me (she said the only thing she remembered was my phone number) and said “why am I not still working somewhere?”
I said….because you’re 93 years old and you don’t have to. “I am? That old?”
I promised her that if she would push her “help” button, the sweet people down the hall would come in and help her, and that she gets her hair done this morning, and that by 9:00 she would not remember making this call. “Yes I will” she said. No she won’t. And that’s the blessing. However, I WILL remember the call….all day long. It will sit deep in my gut, coloring everything that I do today. And all the therapy in the world….all the mental exercises….”put up a boundary” “encase yourself in a pink bubble” “You can’t fix her…you’re not that powerful”…..and all of that is great, and it’s wonderful advice and I will still have this call, and every other one she’s made, sitting in my gut, and in my brain, and in my heart.
Please find a cure for this….it’s such a horrible disease.
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01.14.09
Posted in Alzheimer's at 3:55 pm by Karen
Mama has been having trouble getting in and out of my car for the last month…..and getting up the 5 steps to my house. Her knees have been hurting every time she stands up from a chair…..really hurting. For a few weeks, I atributed this to the fact that she’s 93….I mean, come on…..MY knees hurt quite often and I’m ….well, I’m NOT 93! Then it occured to me that there is a physical therapy department IN her building…albeit on “the other side”, where the rehab and nursing care wing is. I began the loooooong process of calling her doctor, getting an order sent, checking out her insurance, signing papers, and FINALLY yesterday, she had her first apppointment.
The P.T. spent 5 minutes with her, (I had to answer all of the questions cause Mama was confused about why we were there), and then asked….”Well, doesn’t she get SHOTS in her knees?” SHOTS in her knees??? She can get shots in her knees? “Oh yes, ALL of these people (she points to the 25 old folks who were in there being therapized) get shots in their knees!” and she looks at me like I’m the stupidest person on earth for not knowing this.
I’ve been taking Mama for shots in her SPINE for several years….to address the pains she has in her hips and back. WHY didn’t I know about shots in the knees? How come nobody ever TOLD me?? How come I never asked?
We’re going up to the Bone and Joint clinic this afternoon, after I do my voice lesson and a three-hour writing session, to get SHOTS in her KNEES. It’s supposed to alleviate the pain in an INSTANT!
I’m doing the best I can, trying to balance a career and being Mama’s main person….but between you and me, I’m feeling like a monster for letting her suffer for a month. Perhaps a can get a shot in my HEAD to ease up on the guilt.
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01.11.09
Posted in Alzheimer's at 6:33 pm by Karen
It’s Sunday, January 11. I chose to answer this morning’s call from Mama, and I’m so happy that I did. I was able to clear up some massive confusion that was going on in her head. Mama and I went out to visit Ray, my brother-in-law, on Friday. He had a bad motercycle accident a few days ago. So, Mama’s call went like this….”Karen….how do I get in touch with Aunt Rose and Uncle Nate? “ Oops….they’ve both been dead for many, many years. “I’ve been up all night worrying about them….Uncle Nate had a bad motercycle accident and how is Rosie going to pay the bills? I have to help her, but I don’t know how to find them” Wow. After I got over the initial absurd picture of my Uncle Nate on a motercycle…..I gently told her that they had both been gone from THIS side for a long time, and so they were both fine, and didn’t need any help. She then said…”Oh my God, it must have been a DREAM! Could it have been a dream? It was so very real.”
So we talked about dreams, and visiting Ray, and how that must have snuck into her dream. She felt better.
I wish I had a way of knowing in advance if the morning call was going to be one like this…one where I can be helpful….or if it’s going to be one where she’s panic stricken and begging me to come over. Those mornings are handled best by the nurses and aides who work there, and who come in every morning to help her get going….and then I don’t carry around that image of my precious Mama all day…not to mention the guilt, etc. It never fails that by 9:00 she’s chipper and relatively happy, and has NO recollection of talking to me yet.
I need a crystal ball…..badly.
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01.08.09
Posted in Alzheimer's/Dementia Diary at 4:26 am by Karen
So….yesterday, Mama called me EARLY in the morning. She was very upset. “Karen…I have no socks. You have to help me. Go buy me some socks. Please. I beg of you.” Well…I knew that she had two drawers FULL of socks, but I thought, what would it hurt…I’ll buy some white socks…all the same….I’ll get rid of the two drawers of old socks. I called Wal Mart, and they were open! I went, I felt, I pondered, I bought some nice white, soft socks. 10 pair. And then, just to be safe, I bought a different kind….a package of 6. I will be set now! If she doesn’t like the feel or fit of one kind, I’ll have the other!
I got over there….noticed that her toenails were rather long….I clipped and filed. Then, I opened package number one. On go the socks. They felt fine. Then, we try on her shoes…..the only pair she will wear now, although she has many, many pair in her closet. “They’re way too tight!” And they were rather snug. Well…maybe you should be wearing the knee high nylons that you always used to wear. (She has a drawer full of those, too) We try on the nylons, then the shoes….”Oh yes…this is perfect!” While she went to the bathroom, I grabbed two plastic bags and stuffed all of the old socks into them, and smuggled them out of the apartment. (She can’t stand to part with any of her “stuff”). Back to Wal Mart to return the socks. Back to my house with two full bags of socks for Goodwill.
Today, I go over to see Mama, and I notice….she has on a pair of old, grey SOCKS with her tennis shoes. “UH, Mama….why do you have on socks instead of your knee high hose?” “OH, I always wear socks….but I don’t have enough….will you buy me some?”
AAAARRRRGGGGHHHHH!!!!!! This is an absolutely frustrating disease.
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12.30.08
Posted in Alzheimer's/Dementia Diary at 7:48 pm by Karen
Yesterday was a bad day. Mama called at 7:10 am, and was very upset. “You HAVE to get over here….NOW!!” Why Mama? What’s going on? Please push your “necklace” and they’ll come running from the nurse’s station to help you. “DON’T go to the gym…..I’m more important than the gym” But Mama….this is a work day for me….it went on and on….turns out there was a sweet aide in the room while she was calling and ranting. She later told me that she has “panic attacks” in the morning, and she actually apologized. I was amazed that she remembered, AND that she apologized. When I told her, mid-rant, that she would never call my sister and insist that she give up HER work to come over, my Mama replied “Bonnie doesn’t give a s…t about me”. How does one respond to that? The fact that MY life and MY work consist of keeping my body in shape, my voice in shape, writing songs….NONE of my family has ever considered this “work”….so of course, Karen has to be the one to take care of Mama…because “she doesn’t really work!”. AAARRRGGGHHHHH!!!!
I love my Mother….and I even like her (when she’s not ranting at me). We ended the day just fine yesterday, I brought here over to my house for dinner….I left her as she was getting ready for bed at her apartment. We hugged and kissed…she thanked me for being in her life. AND, I dread the morning calls…when she doesn’t know where she is, and she’s scared, and then scared and angry….or scared and depressed. I don’t know if there is such a thing as a “kind” disease, but THIS disease certainly seems like the most UNKIND one of all.
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12.28.08
Posted in Alzheimer's/Dementia Diary at 7:44 pm by Karen
Mama’s sitting right here beside me….she came over for lunch, and she’ll stay for several hours, until I take her back to her apartment at the Assisted Living facility. I prayed for patience this morning, as I do every morning, and especially on those days when I’ll see her, which is most days….unless I’m out of town on business. I see a whole month coming up before I have another trip.
This brings up a very heavy feeling. It’s only when I’m out of town that I lose the always-present sense of deep responsibililty I feel for her…for her happiness, for her health. I try to talk to myself about this…”Karen….you can’t change her….you can’t fix her…you never could…and she’s ALWAYS been a negative person…you surely can’t change that”…but it doesn’t do a lot of good. Her dementia adds a whole new dimension to the “care and feeding of Molly Berke”, and frankly, it’s just mind and soul-numbing. How do you deal with a person who cannot remember that you spent 4 hours with them, JUST the day before….and is feeling truly and honestly depressed and lonely, because “nobody ever comes to visit me, nobody cares”.
And so I pray….for patience…so that I don’t shout “Holy Crap Mother!!! What the f…are you talking about???” And trust me, that’s just what I want to do…I might feel better for about 3 seconds, and then I’ll feel like a monster for screaming, and for hurting her feelings. We’re doing great today. She’s always very happy being over here. So why don’t we just mover her in? That’s a subject for the next blog.
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