Archive for August, 2011

For the second time I heard those words, Lewy Body Dementia, spill out of Dr. L’s mouth.  The first time was at my mother’s last appointment.  She mentioned it briefly in passing.  I think she was just, in her very kind, compassionate way, preparing us.  The second time was this week when I called Dr. L about the return of mom’s hallucinations and her increased anxiety.   She patiently listened as I spoke about the martian mom had seen on the roof, about the various people sitting on the patio or walking through the yard, the invisible squirrels and cows approaching.  She questioned me about mom’s anxiety, how it had changed, how it was manifesting itself.  And then I heard those words again, Lewy Body Dementia. 

Dr. L explained that it is not easy to diagnose, that it takes times, but from what she has seen and what she knows of mom’s condition she believes that mom may have what is known as Lewy Body Dementia, otherwise called Dementia with Lewy Bodies.  The first time she mentioned Lewy Body I briefly read up on it, but didn’t give it much thought.  This time was different.  It felt more like a true diagnosis, something I needed to research and learn more about.  After our conversation ended I immediately googled “Lewy Body Dementia”.  Thousands of sites popped up.  I began reading, reading, reading, moving from site to site, looking for anything but what I found.   Symptoms of dementia with Lewy bodies:

Cognitive problems.  Includes confusion, memory loss, reduced attention span —  check

Visual hallucinations.  Seeing colors, shapes, people or animals that aren’t there — check

Delusions.  May consist of false ideas about another person or situation — check

Fluctuating attention.  Daytime sleepiness, periods of staring into space, lethargy — check

Movement Disorders.  Parkinson’s-like signs including slowed movement, rigid muscles, shuffling walk, shakiness, lack of facial expression and problems with balance — check

Cognitive symptoms and level of alertness may get better or worse during the day or from one day to another — check

Damn!  And it got worse.  According to the Mayo Clinic site, Lewy Body Dementia is progressive.  Signs and symptoms worsen, causing  severe dementia and death on average is about eight years after onset.  And what I found regarding treatment:  “There are no drugs currently approved by the U.S. Food and Drug Administration (FDA) specifically to treat dementia with Lewy bodies.”  (www.alz.org)

My chest grew tight, I was having trouble breathing, I felt physically ill.  I could no longer focus.  I had to get out, leave work, go somewhere, anywhere.  I needed fresh air. 

Somehow I needed to break this to dad.  I had to let him know what we’re dealing with, that it will only get worse.  But how?  He is already overwhelmed.  I printed up some information on Lewy Body Dementia, something with basic information, but nothing in-depth, just to break it to him slowly.  I’m not sure how much more I’ll share with him about this awful disease.  I’m not sure how much more he can take. 

I am terribly worried about my father.  I’m searching for a support group for him, people he can talk to who are experiencing similar things, people he can share his sorrow and heartache with.  Maybe I’ll go with him, I think it would be good for both of us.  And I need to call my sister and let her know about the Lewy Body.  I haven’t had the heart to do that yet either.  I guess I’m still trying to digest the information I have learned, still trying to catch my breath.  I have to figure out how to be strong for dad, how to help the both of them. 

I’m just so damn tired – physically, mentally and emotionally.  But it’s not about me and I have to keep reminding myself of that.  It’s about mom and it’s about dad, that’s what matters.


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With those words, “What’s that martian doing on the roof,” I think my mother’s dementia moved into a new dimension. It would be funny if it just wasn’t so darn sad.

Yesterday wasn’t a good day for mom – or dad.  My husband and I went to Mass and left a little early because he was feeling ill.  On the way home I asked him to drop me off to visit mom and I’d just have our daughter pick me up later.  Dad was at Mass also so wasn’t home. My husband stopped in the front of the house and I walked around to the driveway, finding mom standing under the carport.  “I’m going get my nails done.  There’s your dad now,” she declared.  I immediately knew something was amiss since dad couldn’t possibly be home yet.  “Well, good for you.  I’ll just have someone come get me,” I said.  “You can just wait on the patio with Aunt H and Uncle E until I get back,” she said, pointing to the patio.  No one was there.  Looking at mom I noticed her shaking uncontrollably, her legs, her arms, every part of her body was trembling.  I grabbed her by the arm and noticed that she was perspiring profusely.  Apparently she had been standing in the 100 degree temperature for a while, waiting on dad to take her to get her nails done.  “Mom, why are you shaking?” I asked.  “I don’t know,” was her reply.  I gently led her onto the patio area which is air-conditioned.  She had locked herself out of the house anticipating dad’s arrival and I didn’t have my key to get back in.  “There’s your dad!”  she said happily, but still no dad.  I sat her down and tried to make conversation to divert her attention.  “Does Aunt H and Uncle E still go to Mass?  I didn’t see them there today.”  “Yes, they still go.  Look, there they are now,” mom says.  No Aunt H and Uncle E in sight.  “I thought maybe they quit going since Aunt H’s back has been so bad.  Is her back any better?” I asked.  “No.  Here they come now,” mom says.  Still no Aunt H and Uncle E.  And she continues to see dad drive up.  The hallucinations are as bad as I’ve seen them in a very long time.  And to top it off, the dementia eyes are back.

Finally I see dad drive up.  “Look mom, there’s dad now.”  Mom pops up and heads out the door.  Her mind is on one thing and one thing only, getting her nails done.  Seeing mom approaching quickly and me following, dad looks startled.  “She’s been waiting for you to take her to get her nails done.  I’ll just call for a ride, dad.  You go ahead and go.”

Later mom and dad showed up for their nightly visit, mom showing off her freshly painted nails.  We were having our kids and some friends over for dinner so we invited mom and dad to stay.  Dad cornered me, visibly upset about the day and mom’s hallucinations.   “You have to call Dr. L on Monday.  She has to give your mother something for anxiety and put her back on the medicine for the hallucinations.  It keeps getting worse.  She’s been seeing people all day and even saw a martian on the roof,” dad says.  I again explain to dad that the medication for hallucinations is what caused mom to be so lethargic and Dr. L would rather not put her back on it if at all possible.  Dad didn’t like that answer, he is terribly bothered by those hallucinations.  “Well, she needs something to calm herself.  By afternoon she gets yancy,” dad’s word for anxious.  I assured him that I would call the doctor on Monday.

I don’t think the answer is more medication.  That just seems to exasperate the problem.  I really don’t know what the answer is, if there is an answer.  I still believe in the coconut oil, but dad has not been consistent with giving it to her.  He gives her the oil when he can sneak it into a sandwich or some other food item and only about a teaspoon at a time, not even everyday.  She should get two tablespoons a day, but he’s doing the best that he can.  Coconut oil is tricky.  It’s an oil and almost impossible to just take like a medication, a tablespoon full.  Cooking with it is tricky too since everything comes out tasting like coconut and that only works with some things.  And honestly dad is an 83-year-old Cajun man who knows how to cook one way, the Cajun way and that does not include everything tasting like coconut.

I’m at a loss as to how to help the two of them.   I ignore the hallucinations, just smile and move on.  Dad can’t, I think it’s too painful for him.  Yet I’ve seen mom on the medication that controls the hallucinations and it’s not good.  Basically, she is like a zombie.  I’ve given dad ideas on getting the coconut oil down mom and he says he’ll try them.  Time will tell.  Each day is different, one day good, the next maybe not so good.  But I’m not giving up.  I’m still hoping and praying for that miracle.

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Okay, I know I’ve been whining a bit and I’m trying to get better about that.  Actually I can’t decide if things are getting easier or I’m just getting used to this fast pace, crazy life.  But the person who I really feel for is my father.  He rarely complains, yet he is in the midst of the craziness every day, all day.  He can’t get away from it.  I can go to work.  I can go out to dinner with my husband.  I can go away for the weekend (it’s not easy, but I can do it), but dad can’t ever get away.  He’s in the middle of a battle, in the trenches and there’s no way out for him.  He’s exhausted as mom is back to not sleeping at night but sleeping all day.  She gets out of bed, walks around the house, eats things she shouldn’t eat which makes her blood sugar soar by morning, then sometime around 4:00 a.m., if dad is not up with her, she goes back to bed and throws her leg over him.  To top it off, she has now started patting him on the top of his head when she returns to bed.  Try sleeping through all of that.  Dad’s up again by 7:00 a.m., locks mom in the house and goes for a ride on his bike, his only free time of the day.  He begins attempting to awaken mom around 9:00 a.m. which is quite a job in itself.  He checks her blood sugar, cleans her colostomy, fixes her breakfast and then she’s in her recliner sleeping again.  At noon he gets her up, fixes her lunch and then it’s back to the recliner and she sleeps until 3:00 when he attempts to get her up again.  Some days when I arrive she is still asleep and I have to coax her out of her chair and onto the patio.  Now, every morning she wants to go the coffee shop for beignets which is awful for her blood sugar.  And mom is very persuasive, she just doesn’t let up until dad gives in and away they go.  That’s not helping the diabetes issue either, but he is just worn out.  It’s like he is raising a child again.  Then, every afternoon shortly after I leave their house mom gets “antsy” as dad calls it and they are in the car and on my doorstep.  Some days I barely make it home before they show up to sit on the patio with Uncle C, my hubby and me.  I just smile, welcome them in and know that dad needs the conversation as much as mom needs to just go someplace.  And then it’s night and the cycle begins again.  He has to dread the nights.  Offering to stay with mom at night is out of the question.  Dad won’t hear of it.  I’ve talked to him about getting someone in to sit with mom just one day a week so he can have a break.  Again, he refuses.  “Dad, let me find you a maid.”  Nope, not that either.  I do what I can, I clean up a bit while I’m there, but it makes dad uncomfortable.  He is a stubborn man.

I don’t know how he does it.  I don’t know how he stays so strong, after all he is an 83-year-old man.   But he just keeps plugging away, keeps caring for this woman that he has loved for almost 60 years, never complaining.  Dad, you are amazing.  You are my hero.  I pray that I can one day be as strong and as loving as you.

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I only thought my life was crazy.  I only thought I had no time to myself.  Was I ever wrong!  Looking back over the last year I guess I actually had plenty of time – compared to my life now.   Initially my job began as a part-time three-day a week (Mondays, Wednesdays and Fridays), come in around 8:00 and leave at 1:00.  Perfect! I had Tuesdays and Thursdays to myself, playing tennis, doing my thing, cooking, actually keeping my house clean (can’t claim that anymore!)  As my duties increased so did my hours.  Okay, I didn’t mind, still working three days a week just a little longer hours.  Then came Uncle C and the sitter at my house – here everyday, all day, which made being at home just a little uncomfortable.  If I dismiss the sitter then I’m the caregiver, if she’s there it’s awkward.   So, now I’m basically working five days a week, lunch at my desk, leaving around 3:00.  Then my day really begins.  I’m off to the grocery store, running errands, then to my parents house because mom every afternoon is sitting on the patio looking for me.  If I’m later than 4:00 she gets anxious and nervous and begins seeing me, even though I’m not there yet.   I’m there for about 45 minutes then off to my house, unload groceries, greet Uncle C, talk to the sitter about the day and Uncle C’s well-being, dismiss the sitter for the day and about that time mom and dad show up.  Some days they almost beat me home cause once I leave their house Mom gets anxious, wanting to go somewhere and they show up at my house.  Out they go to the patio while I’m fixing a toddy for Uncle C and something to drink for mom (dad is self-sufficient).  We’re out on the patio, mom sitting quietly while dad is chatting with me and Uncle C until mom gets anxious again and ready to leave.  That can range anywhere from 15 minutes to an hour.  Once they’re gone I’m up again, cooking supper, doing laundry, picking up, trying to keep some semblance of a neat and clean house (I’m losing that battle terribly).  Hubby gets home, supper, more dishes, more laundry, augh!  Finally, around 10:30, 11:00 o’clock, I drag myself over and fall into bed, only to start the routine over again tomorrow.  The sitter keeps telling me she doesn’t know how I do it and honestly, I don’t know either.  Sometimes I’m so damn tired I can barely put one foot in front of the other.  Then I somehow rejuvenate, quit feeling sorry for myself and keep plugging. 

The hardest part is I see no end to this cycle any time soon. I figure that about the time things get easier again I’ll probably be too old to enjoy it and someone will be taking care of me.  Don’t get me wrong, I really am thankful that I’m able to help these people I love so dearly.  But sometimes I’m so exhausted I can’t think about much more than how sucky my life has become.  For now, I just need a nap and hopefully I’ll be able to appreciate all the goodness in life once I wake up.

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A couple of nights ago I heard my husband get out of bed around 11:30.   That is not unusual, he often gets up and watches television if he can’t sleep.  What was usual was seeing him hurriedly throw on his robe and scurry down the hall yelling “Hello!”  Initially I thought perhaps Uncle C  was up, but when I heard my husband disarm the alarm I knew something was amiss.  Shortly afterwards he burst into the room, “Your dad gave your mom something for anxiety and it had the opposite effect on her.  She wants to see you.” Rushing down the hall I saw mom standing in my kitchen, wide-eyed and scared with her arms outstretched towards me.  I wrapped my arms around her, “I just need you to hold me,” mom said.  Dad told me that she  just wanted to see me.  We stood there for a minute or two until she let go and then I gently led her to the living room.  The evening anxiety and sleeplessness had returned and dad, exhausted and not quite knowing what to do, gave her a Lorazepam, a prescription medication the doctor had given her for anxiety.  It had been months since she had taken one and now it was having an adverse effect.  I sat mom down in our living room and pulled up the ottoman to sit near her.  I held her hand, stroking her arm, telling her I loved her and it would be okay.  Mom was shaking and kept asking, “What’s wrong with me?”   Then she’d ask me to hold her again and we would stand up, I’d hold her for a minute and then she would sit again.  At one point she opened her eyes, looked around and asked, “Where are we?”  She was very confused.   “We’re at my house, mom, in my living room.  Don’t you recognize it?”  “No,” was her response.  She’s been to my home thousands of times.   “Do you know who I am,” I asked.  “Yes.”  My husband and I got her up, had her lay down on the sofa and got a cool towel for her head, but she was restless and anxious.  She kept asking for water, drinking three large glasses in a very short period.  I thought maybe  this had something to do with her blood sugar and sent dad off to get the machine to test her blood, but it was nothing that simple.   

At one point mom decided she wanted to go home, but her knees would buckle and her head roll back whenever we tried getting her up.   After about an hour we were able to get her to the car and  my husband and I threw some clothes on and followed them home.  We certainly didn’t want dad to attempt getting her out of the car and into the house alone.  Once back at their house we got mom into bed and she curled up in a fetal position, pulling the covers over her head.  I kissed her, told her I loved her and prayed that she could find peace.  I asked to see the medication dad had given her since he had no idea what it was.  He just knew it was for anxiety.  “I’m going to take this with me dad so I can research the side effects,” I suggested.  Dad readily agreed.  They will never see that medication again.  My husband and I finally arrived home around 1:00 a.m., but sleep was not to be.  My mind refused to calm.

I waited until around 9:00 the next morning to call, hoping that they were able to get some sleep.  Yes, dad said, mom had gone right off to sleep once they returned home.  She was still sleeping.  Unfortunately, my husband and I had to leave town that afternoon and I was unable to visit them.   When I called dad yesterday to ask how mom was I heard concern and disappointment in his voice.  “Not good,” he said.  “Ever since the incident the other night she is back to being depressed, not talking, just sitting there quietly.”  I don’t have the heart to tell dad that it’s not depression causing mom’s silence.  With depression there’s the hope that things will get better, that the depression will subside, that medication can fix it and that mom will be back to normal one day.  With dementia, there is little hope that things will ever be normal again.  So I let dad think that mom’s silence is simply depression.  I can’t burst that bubble.

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Monday was a difficult day.  I just woke up out of sorts.  I found myself rushing around and irritable.  Mom had a doctor’s appointment at 8:45 with Dr. L, which of course is always on a Monday, the worst possible day for me to get away from work.  I arrived to find mom and dad in the crowded waiting room, mom looking like she had just woken up, hair disheveled and sleepy-eyed.  I tried running my hands through her hair to fluff it a bit so she didn’t look quite so much like a crazy woman, but it just wouldn’t fluff.  Mom didn’t even notice which is not my mom.  We were called back, vitals taken, put in a room and Dr. L  bounced in shortly afterwards.  She is always so cheerful and has a way of making you feel like she is genuinely happy to see you.  She just has that gift.  She sat and chatted with us about how mom was doing, about her blood sugar (still too high), about her triglycerides (way too high) and then about her hallucinations.  This is such a sore spot with dad who is bothered terribly by the hallucinations.  Yes, we told her, they were back.  But she really only sees people, usually someone she is anxious to see and nothing scary or harmful.  That’s a good thing.  Dr. L went on to talk to us about hallucinations and then spoke about Lewy body disease which is one form of dementia.  The symptoms include an impairment in walking such a shuffling gait, fluctuations in cognitive function with varying levels of alertness and attention, periods of being alert and coherent alternating with periods of being confused and unresponsive. Visual hallucinations usually occur early on.  Delusions are also common.  Mom has all of the symptoms described.  But Dr. L went on to say that it was still too early to make that determination.  She also said the dreaded “A” word – Alzheimer’s.  Wow, not expecting that one.

Dad then brought up the coconut oil and how well he thought it was working.  Dr. L was polite, but seemed unconvinced.  Dr. L asked mom if she thought it was helping.  “Yes, I think so,” mom replied.  “Do you feel less confused in your mind?” Dr. L asked.  “I think so,” mom replied not really sounding sure.

After chatting with us for about 30 minutes, Dr. L asked mom to get on the table so she could examine her.  “I’ll help you,”  Dr. L said.  With Dr. L holding her hand, mom struggled to figure out how to get on the table.  Suddenly, Dr. L’s nurse burst in needing her signature, noticed mom struggling to get on the table, grabbed her other hand and yanked mom up on the table.  Okay, she was up, but the nurse missed the point.  After the examination it was time to get mom down.  It took Dr. L, dad and me to assist her.  Mom just kept looking down at that one lone step, not quite sure what to do next until dad coaxed her down saying, “Honey, just put one foot down at a time.”  She honestly could not remember how to step down from the table.  My spirits sunk even lower.

The rest of the day I spent running around like some mad woman.  I struggled to be even cordial at work which is unlike me.  I can usually hide my feelings pretty well from my co-workers, but I just wasn’t myself.  After work, I made my usual stop to visit mom and dad before rushing home to pack a small and bag and take off for New Orleans to help my youngest daughter.  With two hours to spend alone, thinking, contemplating, I realized that exactly one year ago to the day we realized something was terribly wrong with mom.  One year ago my life changed forever.  And I cried.  I cried for my mother, for my father, for my life that was, and for my life that is forever gone.  But then life goes on and you quit feeling sorry for yourself, you pick yourself up and keep trudging along.  There’s no changing the circumstances, there’s only finding a way to handle things gracefully.  I just pray that I can be strong for my mother and for my father and enjoy the time I have left with the both of them.

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