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Archive for January, 2011

And then there were the other issues.  Mom has had problems sleeping for years, but her sleep habits continued to get worse.  Like a baby she has her days and nights mixed up.  Mom began sleeping all day and no matter how hard you tried you could not get her to stay awake.   She sleeps through visits from family members or friends, in the middle of the living room, tv on, conversation going.  But once night comes she is wide awake.  Dad is exhausted trying to keep an eye on her.  She walks around the house, watches tv and eats everything she is not supposed to eat.  Mom is diabetic (throw that one on the pile!) and we have a horrible family history of diabetes.  Mom’s mother was diabetic, her father lost a leg to diabetes then went into a diabetic coma and died and her only sister is diabetic.  Dad attempts to hide things that she should not eat, but mom always finds something sweet to eat.  There were times when she refused to eat anything but fruit.  One week she ate nothing but watermelon.  And dad, doing the best he could, bought it for her because she refused anything else.  When it comes to sweets, mom has absolutely no self-control.  That only got worse as her mental state deteriorated thus her blood sugar kept going up and up.

Finally, mom was able to see the geriatric-internist, Dr. L.  I had encouraged dad to make an appointment with her also, but he told me, “She’s just for old people.”  Dad is 82, mom only 77.  How funny!  Mom’s appointment was scheduled for 9:15 and this wonderful doctor walked in promptly at 9:15.  She spoke with all of us, asking questions, taking notes.  She sat knee to knee with mom and listened, patiently.  At 10:20 she asked dad and me to step out so she could examine mom.  When we returned to the examining room dad asked her if she treated men also.  “Of course I do,” Dr. L. said with a laugh, “I don’t discriminate!”  Dad made an appointment with her that very day.  Things were finally looking up.

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I began researching “hallucinations in the elderly” and read everything I could find on the subject.  Much of it was disheartening – not exactly what I wanted to see.  The more I researched, the more I realized that mom was having not just hallucinations, but delusions as well.  One article in particular from http://www.agecaring.com explained the difference in a simple, clear manner.  Basically, it states that “A hallucination is experienced through one of the five senses–so a person may see, hear, smell, taste, or feel things that seem so real but aren’t. A delusion, on the other hand, is something a person thinks, something they strongly believe to be true, which is not. Because both maladies seem so real to the person experiencing them, it is often impossible to convince them otherwise.”  Yes, mom was having visual hallucinations, but they revolved around things that mom really wanted to happen and truly believed were happening.  She really wanted my youngest daughter to meet and date a wealthy young doctor, thus she saw them together everywhere.  She longs to see her great-granddaughter, thus this child appears at the door often.   The explanations as to why this could be happening were more difficult to swallow – dementia, Alzheimer’s, mental illness, delirium, schizophrenia, drug or alcohol abuse.  I ruled out mental illness, schizophrenia, drug and alcohol abuse.  I found reference to something called “hospital delirium” which occurs in the elderly shortly after major surgery.  Mom had had a hip replacement in February, but it seemed like quite a long time for this to only be occurring now.  That probably wasn’t the answer either.  Although the antibiotics cleared up mom’s bladder infection, it did nothing to help with the hallucinations.  The options left were not good and the hallucinations/delusions continued.  And she just wasn’t herself.  Mom now had a kind of vague, lost look about her.

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When my parents arrived for mom’s scheduled colonoscopy they were told that the appointment had been changed to the next week.   Apparently, someone from their office had spoken with my mother, but she didn’t remember.  Since she had done everything necessary to prepare, the doctor was kind enough to perform it.  What he found was that the hemorrhoid was not a hemorrhoid, but a tumor and he did a biopsy.  When the results came  back my father understood that it was not cancer, but the kind of tumor that could become cancer.  Mom was then sent to a colon and rectal specialist and that’s when we heard the “C” word.  Cancer.  Rectal cancer.   Very nonchalantly and with a shrug of his shoulders this doctor told us that it indeed was cancer.   All of this occurred within a two-week period.

There were days I just cried.  All day.  The tears ran down my face and there was nothing I could do to stop them.  I was so overwhelmed.  My husband was wonderful and understanding, yet still the tears kept coming.  My children called daily to check on me.   The ladies in my office were kind. When they walked in and saw the tears they quietly walked back out, knowing there was nothing they could do to comfort me.   And I’m not a crier.  Never have been.  But things had changed.

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The very next day I received a call from dad.  “Are you still at work?”  “Yes I am,” I said.   “Can you come over?  Your mom thinks we need to separate.”  With those words I knew that something was terribly wrong.  This was completely out of character.  Dad has always treated mom like a queen and she acknowledges it.  She has never put gas in her car and no matter how much trouble we give her about it she refuses to learn.  He plans big, elaborate trips for each anniversary – all 56 of them.  He helps with the cooking, cleaning, anything to make her life easier.  Mom repeatedly tells my daughters that they need to find a man like Gramps.

I rushed over to find both of them on the patio, mom sitting there looking like nothing was wrong and dad looking worried.  He’s a little Cajun man who gets very nervous when things aren’t going well.  After chatting for a while I asked mom what was going on.  She simply stated that dad had talked behind her back so she thought they needed to separate.  She was going to get an apartment and they should split their money.  I explained to mom that since I was the one that had asked dad to come to my house to speak with me that her anger should be directed at me and not him.  I gently told her that it was only because of our love and concern for her that we had spoken without her present.  I then explained to her that my daughter had no boyfriend with a red car, hadn’t even met the man with the red car.  In a tiny voice Mom whispered, “Mark”, her name for this imaginary man.  I told her that none of the things she had seen so clearly had really happened.  “Well, where did I get that?” she asked.  It was such a sad moment. Mom was so confused and so was I.

A couple of days later, dad informed me that mom had been suffering with a hemorrhoid and that it had been bleeding for the last couple of months.  She refused to use medicine because it hurt too much.  I didn’t like the sound of that and encouraged them to see a doctor.  Mom later told me that she had made an appointment with a gastroenterologist and that the appointment was the next day.  Upon arrival they were told that mom did not have an appointment.  She had not even spoken with anyone at the office.  Dad took care of getting a colonoscopy scheduled for the following Wednesday.  Things just kept getting worse.

Later that same day when I stopped by to visit, mom appeared to be in pain.  She told me that it burned when she urinated and that there was blood.  I suspected a bladder infection and immediately drove them to a walk-in clinic since it was late on a Friday afternoon.  We waited for hours with mom in excruciating pain.  I recalled during my hours of research seeing a vague reference  in one of the articles about bladder infections causing hallucinations in the elderly.  Bingo!  As difficult as it was to see mom in pain, it did give me hope that we might have possibly found the cause of her hallucinations.   Mom was given a cup for a urine sample and she proudly came back holding the cup out to the nurse.  When she was told that the cup was empty mom looked stunned, then quickly recovered saying that she just didn’t need to go.  At that moment I realized that perhaps the reason we had not noticed anything wrong before was because mom had been working very hard at hiding it.  Mom indeed had a bladder infection and we left hoping that the medication given her would fix both the physical and mental.

On Monday we arrived for mom’s scheduled appointment with her internist, the same man who refused to speak with me earlier.  He sat with us, listened, spoke at length about his father who had died with Alzheimer’s and then made an appointment for us to come back in a week.   Things continued to decline and mom continued to see people and things that were not there.  I think she doubted that Mark really did not exist and continued to see the little red car.  She would get very anxious and antsy and dad would put her in the car at all times of the day or night and take her for a ride.  Sometimes they would only get a block away and she was ready to go home.  Other times they were knocking on my door at 9:30 in the evening because dad just wasn’t sure what else to do with her.  On one particular afternoon when I got to their house mom was very anxious and wanted to take the car and go somewhere without dad.  Dad had wisely hidden the keys.  I told her that I would take her for a ride and she got very excited, like a little child.  She went inside and came out in full make up, a dress and heals.  Mom has always been a very proud lady.  We picked up my grandchild who mom adores and just rode around town.  I pointed out places of interest, “Look, mom, that’s where your grandson’s rehearsal dinner will be,” “That’s where your granddaughter is working.”   As we went by a little outdoor cafe mom asked if we could stop.   She and I each ordered a glass of wine and an appetizer and enjoyed the beautiful evening.  She was so happy and looked so peaceful.  I had  not seen her like that in a couple of weeks.  After about an hour she was ready to go home and we left.  It was a special moment for both of us.

We returned for mom’s next appointment with the internist and he had already determined that mom had Alzheimer’s.  He proceeded to write a prescription.   When I protested, asking about possibly having mom see a neurologist, having some testing done, this doctor became very angry, shaking his finger at me and insisting that he had done all the testing that needed to be done (he had not).  He angrily demanded that since I wanted her to be seen by a neurologist that I give him a name of one immediately.  I left there very upset.  This doctor’s arrogance had gotten in the way of my mother’s best interest and I was determined that my parents would never see this man again.

I called my sister and asked that she meet me at our parents house to discuss changing doctors.  Even though she is younger they tend to listen to her more.  Surprisingly, they both agreed to change and the search was on for another doctor.  After speaking to many people and doing much research we struck gold!  A wonderful, compassionate geriatric internist agreed to see my mother, but the first available appointment wasn’t for a month.   That was a long time to wait for answers.

And then the unthinkable happened.

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I can deal with almost anything graciously if I know what I’m dealing with.  But I do not handle uncertainty well.  When you are dealing with dementia everything is uncertain, at least in the beginning.  Really, how do you know?  How can you be certain?  There are so many questions constantly going through my mind that I just cannot find the answers to.  What if…?  Maybe it’s …..  Could it be…?  How could it all happen so fast?  What did I miss?  Should I have noticed something was wrong sooner?  Would it have made a difference?   Looking back I guess there were signs.  Maybe.  But I am still having trouble wrapping my mind around the phrase “my mother has dementia”.  How can you know for sure?  Still when asked about “it” and my mother, it comes out “my mother may have some dementia, we’re not sure.”  I keep hoping it’s just medication or the bladder infection or anything other than … dementia.

August 1, 2010 – that’s the day my life was turned upside down.  Up until that day I lived in this little bubble world where everything was good and my life was easy.  Yes, I have lived a blessed life – good parents with a good childhood, a husband who loves me dearly, three terrific kids.   A friend once told me that no one’s life can always be as easy as mine.  I just laughed and gave praise to God for my very good life.  And then I got the call from one of my daughters – “Mom, something is wrong with Granny.”  Then the call from my other daughter, “Mom, something’s not right with Granny.”  My husband and I had been out-of-town for the weekend and my daughters didn’t want to worry me while we were gone.  My youngest daughter was moving to New Orleans on July 28th and my parents happened to be going there that same day so helped her move.  A red convertible was parked at the house next to where my daughter was to live and that’s when things began to change.  In mom’s mind the man in the red convertible was in medical school and dating our youngest daughter.  She saw them together everywhere – they went to have dinner with mom and dad at the casino Monday night and he bought them all a steak dinner.  The next day mom told dad that she had seen my daughter and the man with the red car at the casino in Mississippi.  Dad had no reason not to believe her even though it seemed odd.  A few days later they appeared at my parents home when dad was not there – they were in the red convertible with my granddaughter sitting on this man’s lap.  Unbelievable, yet dad still didn’t doubt her story.  Well, there is no man in a red car dating my daughter.  My daughter has never met the man in the red convertible.  There were other things that weekend that were troubling.  Mom pointing to money on the counter that wasn’t there although she clearly saw it.  Mom telling my oldest daughter that she had bought her 7 shirts but none were to be found.  It went on and on. It was all so confusing.  What had happened?  Dementia never entered my mind – it was all so sudden.

I had no idea where to begin but later decided that I should start with a call to my mother’s doctor.  I thought he needed to be aware that something major was happening with my mother.  Since I have medical power of attorney on both of my parents I assumed the man would speak to me and show an interest in his patient.  I was wrong.  I received no help.  In fact, when I tried to explain about mom’s hallucinations he told me he once had a patient that at the beginning of one month was running a major corporation and by the end of the month could not tell you his name.  His only advice was to show up for mom’s next appointment.   Comforting, wasn’t he?  I then called dad over and broke the news to him that something was wrong with mom – that there was no man in a red car, mom had not seen them at the casino, he and my daughter had not gone to their house with my grandchild.   It was heartbreaking.  He was so confused and didn’t understand.  He kept saying, “but she’s never lied to me before.”  I tried to explain that she hadn’t lied to him, that in her mind she really was seeing these things.  I reassured him that we would figure it all out and it would be okay.  I had no idea how I was going to take care of this but I did realize that my life had just taken a drastic turn.

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