Mom’s Dementia, Time To Think About a New Approach to Her Dementia Care

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It’s been a very long week in our house. I am feeling that Mom has downward spiraled to another stage of this horrid disease. Her dementia care keeps needing updates without warning. The dementia stages are mind boggling if you are not ready for them. She’s been trying to leave the house more often in the day. There was a time, where she used to only try to leave when sun-downing at the end of the day. Now she is starting her dash to the door at a moment’s notice, at any time of the day, which can be set off by just asking her to wash her hair or take a bath. Somehow I can hardly picture her dashing to anywhere since she shuffles and walks at the speed of lava. A few times, poor Cardine, her home aide, had to text me to call the house so that I could talk her off the ledge. She would be so determined to leave the house…go look for a job, look for an apartment, go to find her mother, just whatever came into her head.

It’s becoming a dilemma. Thankfully, we are due to go to the doctor this Wednesday for her progress checkup, so this is something we can discuss at this visit. Having said that, I am already stressing about getting her to cooperate in getting dressed and out the door. Hopefully I can put on the Pavarotti Cd which will make her calmer and more cooperative. What I suppose will happen, is that the doctor will up one of her meds, but at the same time, I don’t want her to be sleeping all day long either. She’s finally sleeping at night so I don’t want her days and nights mixed up. Plus she needs to have her brain engaged with something that makes her happy. It’s the only way to slow down her progression of this nasty disease.

mom_doc_july14Another issue we’ve been having is that she will almost be falling out of the bed by morning. She leans to one side, never the other and by the time morning comes, her head is on her night table, not a good thing. It’s just too strange. I’ve tried putting her in the middle of her bed at night but she is still hanging off by morning. Might be time to get a bed rail, which she will be none too pleased with…another daily challenge I see coming. We shall see.

Photos Above: (1) Mom on the left and Theresa my mother-in-law on the right. (2) Mom way back when she was working, living in San Diego, sitting in front her her typewriter, something that she loved. The good ole’ days…before our parents were boomeranging. Below (3) Mom at the doctor’s office.

Theresa, my mother in-law (pictured above) went on to be called Oma by just about everyone, including me and my Mom. She is still with us, happy, healthy with the exceptions of a few age related illnesses, but she’s got her head thank goodness. She presently lives with her daughter in CT. and is another Boomerang Parent. I wish that my own Mom was that lucky!

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Easter Sunday, Dementia, Mom and Memories of Her Sister Lillian

mom-sister_1929mom-sister2_1942It’s Easter Sunday, the sun is out, temps a bit cool, but it’s a happy, positive and upbeat day! The house is quiet and peaceful, just the way I like it and Mom started her day, on a bad note. She apparently got up in the middle of the night after having a little accident and took some of her night clothes off…so she woke up a little wet and cold. No matter, I got the situation under control and we were off to a better start. Got her breakfast, the Sunday newspaper and we sat together reading and eating. You never know what to expect with dementia or Alzheimer’s disease.

Photos: (1) Mom and Lillian as young ladies, (2) Lillian and Mom considerably younger, (3) Below, Mom and Lillian again, very young, probably 1929.

This afternoon, Mom is wandering around the house appearing to have a good ole’ day and I am sitting here thinking about Lillian, her big sister. Mom spends a lot of time talking about her older sister who she worshiped, as they were very close as they were growing up. Lillian passed away very early on of Leukemia, leaving 4 small children and a husband. They lived on the other side of the United States in the state of Washington, so we didn’t get to see her before she left us. Back then it was a big deal to fly across the country, especially for my grandparents who never ate out, let alone get on a plane to fly cross-country. I know that my grandmother had always felt somewhat guilty for Lillian’s Leukemia, even though she had absolutely nothing to do with it. Never-the-less, she couldn’t shake that feeling.

Lillian was a kind and gentle woman who was not only very intelligent but was lucky enough to have gone to college as well. She had always wanted to be a mother and was blessed with 4 beautiful children, Michael, David, Maggie and Mom-Lil_brookynSam, my cousins. I don’t have any siblings, so these first cousins are close to my heart. Matter of fact, there was a time that I almost became a part of their clan when Lillian and Bob wanted me to permanently come live with them when my mother’s OCD was out of control. Mom actually never wanted to be married with kids as Lillian had. She had only wanted a career in Manhattan which she had accomplished, it was her dream. I was really only holding her back when I think about it now…but she was a trooper. I never actually knew that fact as a child, so she hid it well. I’ve always wondered how my life would have been different if that had happened? I suspect, I would have been more educated, had more people skills, have made better choices in my life and would have had a male role model in Uncle Bob not to mention a very present mother figure. But that’s all hindsight now…we only have the here and now. Everything happens for a reason.

As a child, I remember Lillian and her family coming to visit my grandparent’s house, which is where I was most of the time while growing up. It wasn’t a big house but we always found room for the McCracken clan when they came to visit. To my delight, we kids would camp out on the floor on a big quilt in the living room. Aunt Lillian would come in and read to us…I thought it was amazing. Nobody had ever read to me when I was a kid…just Aunt Lillian, in her very soft, expressive and compassionate voice. You couldn’t help but love her. She was living her purpose, on her life’s course and obviously was very happy doing what she loved to do. And her kids loved her so much…they were lucky to have her and I believe they knew it. To me, they seemed to have a great life, great parents, brothers and sister…what could be better? Who was to know how things would change so drastically in the future with the passing of their Mom. It would be a life changer for their family.

From what I can remember, Lillian took after her father, my grandfather, who by the way, had dementia in his later years. She seemed to have more of him than my mother did actually, but that’s only my personal observations and opinion. I often wonder, had she of lived, would she be in the middle of this dementia curse as my mother is? We will never know. We only have the wonderful memories of Lillian and although Leukemia took her, she was spared the torture of dementia.

When I had originally written this post a year ago, I didn’t know that my mother with dementia would be gone by now. I thought for sure that I could get her to 90 years old…a milestone for our family, but it was not to be. Out of left field, she was diagnosed with Leukemia of all things, like her sister. As if having dementia and Parkinson’s wasn’t enough…she developed Leukemia. She was gone less than 2 months later. What are the chances that sisters would both have Leukemia? Hematologist told me that they both were probably exposed to something as children. Could my grandmother have known something, or suspected something, therefore feeling guilty all those years? I guess that I will never know the answer. She’s with her sister Lillian now, running around with the angels…waiting to welcome us someday.

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What Am I Trying to Say? Dementia thoughts…It’s Been a Week…

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Mom and her father, also with dementia.

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This week has been an unusual week for Mom. Not sure why, but we all know that every day is a new day with dementia patients. Who knows where these things come from but they happen and we deal with them as they unfold. It started out with the usual bath and hair wash on Monday and that was a good thing…as she needed it after the weekend. Cardine works her magic and manages to get her to cooperate. Then Tuesday came…..like a bad dream. Seemed okay in the morning, but then again she can fool us all when she has a mind to. Things can turn on a dime….

Once a month, the Visiting Nurse Service comes to give her a vitamin B12 shot due to a deficiency. So, this day, the nurse shows up and walks into Mom giving poor Cardine a run for her money. Apparently since I left in the morning, Mom has been giving Cardine a hard time. All morning she has been trying to leave and go to find her mother. We’re familiar with this but not necessarily at the start of a day. It usually happens when she is sundowning….later in the day. By the time the Visiting Nurse arrived at noon, Cardine was nervous and worn out, not to mention stressed….let’s not leave that out. At that point after the nurse witnessed what was happening, she called me at work. She told me that she was trying to leave the house and being very aggressive which was unusual. She thought I was still a child and that it was a bad situation. She thought perhaps I could have some influence on Mom if I spoke with her. They put her on the phone and I talked her off the ledge and stayed on the phone while her B12 shot was given and everything seemed to be all right. Afterwards, she took a nap and woke up normal and back to her old self. Thank goodness for small miracles.

She had another day of looking for her mother but it wasn’t as intense as on Tuesday. I was grateful for that. On Saturday, after I came home from my errands and appointments, I found that she had been working with her papers all day and was intensely writing on a greeting card seeming to be totally engrossed in what she was doing. I didn’t say anything because it was a good thing. At dinnertime when I came in to sit with her, I noticed a greeting card on the table next to me. While I was eating, I opened it out of curiosity. It is shown above. It says:

Dear L

Aas of linuse to g you anothew omng om thee tho rourte. up….to das sull–––keel thirn is turning imme my This is getting me ne me nousre,, Can’t rain the street!!! Don’t P got to gstap the misc….the lc s to N D. Dr t lakin I can’t s as of any thing any molbre. So long, well uille will well stand. Will I’pp.

Totally took me off guard. I mean, I know that she can’t speak correctly but on the other hand, I know that she knows what she wants to say. She just can’t get it out of her mouth. I didn’t know about how she would write it. This was an eye opener for me….a reality check. It means that although she knows what she wants to say, she cannot say it, or write it. How frustrating that must be for her. Knowing exactly what’s on your mind but trying to say it while seeing the blank look on your audience. It has GOT to be frustrating. She had always been a very smart and articulate person, reading, writing poems, working on her vocabulary throughout her whole life, doing crosswords, and hard ones at that. Now, she can’t express herself in any way. Unless you can guess at what she wants to say, there is no way you can understand what she is trying to say.

This greeting card, which was originally from me to her back in 2012, turned into a reality check for me. Can’t help but wonder, what she was trying to tell me. We will never know.

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Hello, Hello, Are You There? Old Friends.

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Mom and childhood friend

Although, Mom hasn’t seen Noreen for more years than I can count, I consider her one of her best friends. Noreen is someone with whom she worked with back in the good ole’ days in Manhattan. When Mom still had her head, she told me that she had actually hired Noreen back in the day and they went on to become close friends. Noreen lives in Texas with her son and to this day calls her every single weekend to touch base and chat. She calls even though she knows that sometimes Mom doesn’t remember who she is, and sometimes doesn’t make sense when she talks. She calls because she knows that being remembered and getting mental stimulation about the past is an important therapy in a dementia patient’s life. She’s not coming from an ego place where Mom must remember her or else she won’t call anymore, no, she’s coming from a place of compassion and love for her friend, no matter what the circumstances are. I’d call that pretty special.

Today, Noreen called, I picked up the phone and looked at the caller ID, and sure enough, a call from Texas. I head towards my mother’s room hoping that today she will remember how to answer the phone. I enter her room and I see her holding her teacup, bending over it saying repeatedly, “hello, hello, are you there?” I answered the phone so as not to lose Noreen’s call, we chatted for a moment, and then I put Mom on after taking the teacup from her. I literally stood there with my mouth open for a minute or two in disbelief. Even knowing and experiencing all that I do with Mom, when she does things like that, without a clue that what she was doing was totally demented, takes me off guard. She had absolutely no idea that that teacup was not the telephone. Someone in my position has to wonder how this can happen, how can it be possible?

It’s times like that when I know we are losing the battle, not the war as of yet, but the battle is definitely heading downhill. Even so,she’s having a good day, chatting in her own language, well mostly listening as Noreen is a good talker and keeps the conversation going while remembering the past times at the office. Mom is listening carefully not to miss a line and as always, very happy and grateful that someone has remembered her and would care to call her at all. It’s a hard thing for someone her age because even though she can’t retain much, when in the moment, she remembers that she has seen what little friends she’s had, die off from either disease or old age, leaving her feeling very alone and isolated from her own kind. You probably are thinking that I  say that like she is a different species from a different planet, but in a way, she is in a category of her own. In her own tribe so to speak.

With that said, I sit here writing this post, thankful for good and loyal friends, hoping that someday I will have that one good friend who won’t give up on me. Meanwhile, Mom is enjoying her Sunday afternoon listening to Pavaratti.

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