02.16.10
Posted in Alzheimer's at 12:51 am by Karen
> I’m so sorry that I haven’t written in such a long time. My Mama made her transition on Jan. 22. I miss her terribly, and I know that when I go back and read these postings, I will miss her even more. However, I would like to share some of my truths: She WAS 94 years old. That’s a good, long life. She was NOT having a great time this last year or so. She IS now free of a mind and a body that were no longer serving her….and I know with all of my heart and soul that she and my Dad are together, and that they are on a great, new adventure. I feel them both around me quite often. I talk to them all of the time.
I also know that moving her into the dementia care unit was part of MY process of letting her go. Had we gone directly from the 50 phone calls a day, starting at 5am…..from those days when I was her everything…every thought….when I was truly HER Mama….this would be much too painful.
So….I had 4 months to lessen the bonds….to begin to let her go. I still saw her several times a week, talked to her most days on the phone, took her out one final shoe shopping trek. Actually, I can’t bear to give those shoes away now. We FINALLY got her a pair of orthotics that worked and didn’t hurt (after several trips back and adjustments made) and then FINALLY found a pair of shoes that they would work in (after several trips back and the brilliant shoe guy figuring out how to lace said shoes to avoid her problem spots)…and she wore them for 3 weeks. I’m considering framing them.
Let me tell you how much I wish that Abe’s Garden had been built, and that Mama could have been there. When I would go and do a musical program for Mama and her new co-residents…I could SEE the difference in her dementia, and that of the other ladies. Mama understood every word…she felt every emotion…she made insightful comments…and 90% of the other residents were just not present…it was like there was nobody home behind their eyes. I would have liked to know WHY…I would have loved for some brilliant researcher to explain to me what was going on inside of Mama’s brain….and inside of their brains.
I don’t mean to belittle the care she got these last 4 months…they were lovely people, and she was so much more relaxed than she had been at her assisted living place. So the ratio of help to resident was much better, and that made a huge difference. The small size of the wing was perfect. She wasn’t getting lost in the building, or not leaving her chair for fear of getting lost. It’s just that our choices now…our alternatives…and remember, she was 15 months from having no more money…they just aren’t that great.
We asked for donations to Abe’s Garden in lieu of flowers…and I’m thrilled to report that many of our friends and family did donate. AND, I will continue to show up whenever they ask me to come and help raise funds. Abe’s Garden is going to change the way Alzheimers and dementia victims are cared for….and it’s going to be a shining beacon & model for others to follow. I’ll be there at the ribbon cutting…may it be soon.
If you are still going through this with your loved one….oh my God…my heart is with you. This is the hardest thing you’ll ever have to do. Please find ways to take care of yourself. It’s so important that you do.
So…..this has been an amazing chapter in my life. It is with sadness, relief, and great expectation that I close this one…..and begin the next.
With gratitude,
Karen (Berke) Taylor-Good
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11.06.09
Posted in Alzheimer's at 12:23 am by Karen
I realize how long it’s been since I’ve written here. Things have changed so much, I don’t know where to start. So….Mama is in her new place…a dementia care wing of a large, “luxury assisted living” place in Nashville. It’s true that her wing is quite different from the rest of the building….and I get that it’s probably just the way it has to be. When Mama has a visitor, they can take her downstairs to the main dining room, and she definitely notices the difference. I tell her that her area is for people with bad eyesight….smaller, easier to get around….and she accepts that.
I wish I understood the different aspects of dementia. When I’ve done programs there for Mama and her group, I look at their faces and see SUCH different things going on behind them. Mama is still very much alive in there…..and others appear to be “not at home”. There are a couple of people who wander and want to escape, so we were warned about keeping the doors to the (locked) wing open for too long. Mama isn’t one of those. She doesn’t have any of the symptoms we saw in my husband’s ex wife Judy, who had early onset Alzheimer’s. It would appear that she simply has NO short term memory. None…..which makes life very interesting and frustrating for the sufferer and those around her….unless they are trained in how to deal with it. These folks are, which means, I’m no longer getting calls several times a week ….”Karen…your Mom is freaking out, we don’t know what to do, you have to come over”. They know exactly what to do, and they help her to calm down.
Since we took the phone out of her room (turns out nobody has one in their room there), my life is much, much calmer too. I can call her on the main phone there, and she calls me every couple of days most weeks….sometimes a couple of times a day….but no more 5:00am calls or 50 calls a day. The more I think about it, I truly have a MUCH better quality of life now.
So….it’s not Abe’s Garden, true….and nobody is doing any research there to help keep ME out of there in 20 years…..AND, I’m grateful to have found this place…..and still doing whatever I can to help get Abe’s Garden built.
My best to all of you going through this with your loved one…..take care of yourselves.
xxxx Karen
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10.02.09
Posted in Alzheimer's at 4:00 pm by Karen
I’m so sorry I haven’t blogged in a while. After I got Mama moved in to her new place, I was out of town for 3 weeks, except for two 24-hour stopovers back home. That’s why it felt so urgent for me to get her in and get her settled before I left. AND, the dementia care people told me it would be best if I wasn’t around much for the first month, anyway…so that Mama would get used to calling on THEM for her needs.
Mama has begun to feel somewhat at home over there. It’s SO different having a staff who understands dementia. Is it Abe’s Garden….NO, it’s not. And for now, it’s a much better alternative.
I have much more peace now…physically and emotionally.
I got my Mama phone service in her room over there, which lasted for 2 days. It seems that my phone number (which Mama used to call every 5 minutes) is dangerously close to 911….if you miss the first digit, that’s what you get. I had some very sweet calls from a 911 operator those first few days. “Your Mom told me she’s on a train, and there’s a man chasing her”. Oh dear.
Then I was told that none of the other residents have phones in their rooms…that we can all call the main number and the phone will be brought to them, or they can ask for help in calling out. SO much better.
I got pretty badly “beat up” by some family members for these blogs. Shocked the crap out of me! “But, I was ASKED to do the blogs….to SHARE the experience….to help people understand it, and to commiserate with others going through it.”
Nope….they saw it as “airing my family’s dirty laundry”…and how Molly Berke, in her right mind, would be appalled at me sharing these stories about her. Oh….AND, that my precious Daddy is basically mortified and ashamed and turning over in his grave.
Wow.
I’ve heard about other families falling apart from these changes, these experiences….but I NEVER, EVER thought it would be MY family.
I’m very sad…and I will continue to care for my Mama to the very best of my ability, and I will continue to share our story….and I will continue to do whatever I can to draw awareness and FUNDS to Alzheimer’s and Dementia research and care in general, and to Abe’s Garden in particular.
So…a new chapter begins…and it feels like a whole, new world.
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09.06.09
Posted in Alzheimer's at 8:43 pm by Karen
I just couldn’t bring myself to write until today. Last Thursday, I got my Mama out of her assisted living apartment, in the building where she’s been for 4 years, at 8am…so that the movers could come at 8:15…unbeknownst to her….to move 3/4 of her remaining stuff to her new place, in the memory care unit of another facility.
It’s been very confusing for Mama…and very traumatic for me.
If I can look at the BIG picture….I know that this is where Mama needs to be. She was spending every day holed up in her apartment, getting so scared and panicky…going down to bug the nurses, on the days that she remembered they were there….she needed help finding the dining room, the bathroom…and they just aren’t set up in assisted living for that.
I started telling Mama about the new “adventure”, the new move, around noon on Thursday. (I had tried to bring it up the week before, and all it did was freak her out, and then she didn’t remember we had talked about it.)
I spent Thursday night there with her…slept in my Dad’s recliner…was pleased that she found her way from her bed to her bathroom several times during the night. On Friday after breakfast, they recommended that I dissappear for a few days. Oh my God..that was so hard to do. I did speak to her many times…she thought she was in a hospital and they were doing “procedures” on her…now she’s not thinking it’s a hospital any more, but she still finds it confusing, of course. I spent a couple of hours with her today…sang to her…played the piano over there…spoke Spanish with her. And when I left, I felt that same pain in my gut…as if I were abandoning my 5 year old.
This is so awful. If I didn’t need to make a living…I would seriously consider moving her in with me. She is so comfortable with me….AND the last several times she spent an afternoon over here, I could get nothing accomplished.
There are only 17 residents at her new place….and it is a locked wing, because there are “wanderers”. One woman is MY AGE. Holy crap.
One man is really out of it…he rambles and rambles incoherantly…and gets very angry very easily. I was really freaking out at our first meal there on Thursday evening. And my Mama’s only comment….”isn’t this a nice, small dining room?” I’m feeling like we’ve been dropped into “The Cukkoo’s Nest” and she was quite comfortable.
I took lots of the remaining pieces of my Mama’s life up to Goodwill yesterday. It’s just stuff. I know that.
And I sobbed…..and I’m sobbing now. I’m looking for the good…she knows who I am…she loves me and can tell me that….she has money to stay in this nice, well-staffed place for 15 months…
I actually wrote these words in my big hit song, “How Can I Help You Say Goodbye”….”life’s about changing, nothing ever stays the same”…
I sound so wise, don’t I? So calm. So philisophical. Guess it flows better than “oh my God this sucks and my heart hurts and I HATE it”.
Big changes.
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08.26.09
Posted in Alzheimer's at 3:27 am by Karen
Things have changed pretty drastically in the last few weeks. My Mom calls out for HER Mama, a lot….she doesn’t realize that she’s doing it. “Mama….Mama”….I’ll say something about it, and she looks so surprised that I heard her. My Mama’s Mama died when my Mom was 12….she’s now 94. Wow. I guess we never stop needing our Mama’s. I wish MY Mama, My old Mama, the strong and amazing, fix anything, take on any problem Molly Berke…I wish SHE was around to help me care for this frail, terrified, demented old woman who has taken up residence in my Mama’s body.
We’ve begun the search for a memory care facility. I so wanted her to last at assisted living until Abe’s Garden was built. It’s not going to happen. It’s really very unfair to have her living there. It’s like leaving a 5 year old in an apartment by themselves.
“Good luck honey! Hope you make it!” She is a total mess unless she’s with somebody…and she’s alone a lot over there.
So…here we go. Next phase. God help me choose the right place…and help me get some songs cut so I can keep her IN the right place!
Life is not easy. Makes me want to call out for help….”Mama….Mama”
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08.11.09
Posted in Alzheimer's at 3:50 pm by Karen
Wow. It’s been an interesting few weeks. Something is definitely going on..and I don’t know if it’s little mini strokes, or just the natural progression of the disease. I had Mama over the other day…she was doing this new thing she does, where she uses the wrong word for something….some every day thing. “What are you looking for Karen?” “A hangar” “Well….here”..and she reaches in her pocket and pulls out her keys. Woah. That’s happening more and more. After I took her back to her apartment, and made her promise she would NOT put on her pajamas and go to sleep (it was 2:30)…I went to a business meeting. She called me in a complete panic. “Karen…you MUST come over here…NOW!” “Mama….I saw you for hours this morning…I just took you back there” “If you don’t come over, then I’m just FINISHED!” I had to do some “tough love”, and it was just awful. Stuff like…”do you want me to have NO career? NO life? Then you have to pull yourself together!” She said,
“you’re right”..but then went on to melt down further to the point that the nurse called for help. My friend Merri was able to go by and calm her down, after a couple of phone calls by me, reassuring her that yes, I DID, indeed know where she lives and how to find her. I was ready to cancel a trip out of town this weekend to find her a memory care place to move into. I called yesterday morning, scared to death about who was going to answer. Which Mama would be there today? It was the one I’ve known forever. “Karen, I can’t talk to you now…I have some friends in here (the nurses aides) and I’m getting ready to go down to breakfast”. Praise God.
My trip is back on.
I think. Of course….I haven’t made
“the call” yet this morning.
I’m thinking the Serenity Prayer was actually written by the child of a dementia afflicted parent and not a recovering addict.
Talk about “the things I CANNOT change”!
So…I’ll be putting on my big-girl panties here shortly, and discovering WHICH Molly Berke awaits me today.
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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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