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Posts Tagged ‘dementia eyes’

I haven’t posted anything in almost two years. Perhaps it is because I have finally accepted what is, accepted what I cannot change no matter how hard I try.  No prayers nor wishes nor hope can or will change the fact that my mother has dementia.  I wish I could say that the reason I haven’t written in my blog is because my mother has been cured.  What joyful words those would be!  But the truth is my mother does have dementia and it is progressively getting worse at an alarmingly fast pace.

Mom rarely speaks anymore and when she does it is a one word answer.  If she does attempt to converse she only gets a couple of words out before her mind and face go blank.  What follows is an awkward silence by everyone around until someone breaks that silence and then life goes on.  She sleeps day and night until someone, usually my father wakes her to dress for the day or eat a meal.  She can no longer feed herself and all food must now be run through a blender.  She chokes when drinking so her fluids must be thickened.  Just getting her to drink is a challenge since she no longer remembers how to suck on a straw (she bites it and holds on tight with her teeth) and trying to get her to drink from a cup is like pouring glue down her throat.  She no longer walks so a lift is used to hoist her out of bed in the morning to place her in her recliner where she sits, mostly sleeping, until it is time to hoist her up and take her back to bed.

Mom is now with Hospice who has graciously provided us with a hospital bed, oxygen machine, lift and many other items to keep mom comfortable.  A Hospice nurse comes twice a week to check mom’s vitals and refill any prescriptions or order other items she may need.  They have been a huge help.  Our caregiver now comes five days a week from 8:00 a.m. to 3:00 p.m. which gives dad much needed help and freedom to get away for a while and be normal.  She is wonderful and I thank God daily for sending her to us.  Every evening around 9:00, I go over to help dad get mom to bed.  Some nights it’s easy.  Other nights I come home mentally exhausted from dealing with what it takes to get her cleaned up and tucked in bed.  On weekends and on days the caregiver cannot come, I become the caregiver.

My husband and I moved to a beautiful piece of property about a year ago that included two houses side by side.  Before making the decision to move we took my parents to look at the property and asked if they were interested in moving with us.  My dad jumped at the idea so they are now living next door and I am able to help more.  As much as we loved the property we would have never moved without them since it was too far away from where they were living.  Dad loves it and mom seems very content so I believe it was a good move.

I believe that mom still recognizes me.  Perhaps it’s just too difficult to think otherwise.  On good days her eyes light up when I walk in even though she hasn’t called me by name in quite a while. On bad days she simply looks at me with those damn dementia eyes.  Up until a few months ago she would say, “Your nose is cold,” every time I kissed her cheek.  She no longer tells me that.  Perhaps it is because my nose is no longer cold, or simply because she no longer remembers what a cold nose feels like.

 

 

 

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Hubby and I were up early Thanksgiving Day getting ready for the 15 family members and friends we were expecting for dinner.  It has been our family tradition for the last 20 or so years to celebrate with an evening meal.  Trying to have everything ready for lunch proved to be too rushed and stressful.  Our daughter had volunteered to bake a cake for dessert and began working on it around 11:00 a.m. when mom and dad drove up.  I was a little puzzled at first as to why they were at my home so early and then realized that dad had somehow gotten confused on when we were planning to eat.  I met them at their car, helping mom out.  “Come on in, K just started baking a cake for dessert,” I told them.  Startled dad said, “Oh, are we eating tonight?  I thought we were having lunch.”  I’ve noticed that dad has gotten a bit forgetful lately so this concerned me.  “It’s okay, come on in.  We can sit on the patio for a while.”  Walking out to the patio dad kept shaking his head and mouthing to me, “It’s not good, it’s not good.”  Oh, I know dad.  One look at those dementia eyes staring at me let me know that she wasn’t having a good day.

As mom and I sat on the patio dad went out to help my hubby in the yard.  I could hear them discussing mom’s condition, talking about what a tough night it had been.  Mom sat, staring into space, not talking, not moving.  I tried to engage her in conversation to no avail.  I brought out my I-pad to show her the proofs of my son’s wedding, yet there was no expression, no acknowledgement.  My mother of old would have been ecstatic to see the photos.  Finally she asked to go in and lay on the sofa.

Needing a few things at the store my hubby asked dad if he wanted to go along.  Dad jumped at the opportunity.  He reminded me of an anxious little puppy, salivating at the thought of doing something normal again, having people around who engaged in conversation.  Mom peacefully slept on the sofa for about an hour and when the men returned we fixed sandwiches for lunch.  I kept thinking that they would return home to rest for a while.  I was worried that if they didn’t mom wouldn’t make it until dinner.  Usually if they stick around too long she gets anxious and wants to go home.  But after lunch they returned to the patio and both napped.  I think dad just needed to be around people.

Around 4:00 I texted my sister, “Come any time.  Mom and dad have been here since 11:00 :)”  I heard nothing.  A few minutes later I phoned.  She answered, “Hey, what time do you want us?”  “Any time,” I responded,  “Did you get my text?”  She hadn’t.  “Read my text and come on over.” They arrived within 15 minutes, chuckling a bit at how long our parents had been at my house.

Mom, of course, was ready to eat the minute they arrived.  After all, she had been here most of the day waiting on dinner.   Once seated at the table we each took turns giving thanks and expressing what we were thankful for.  When it was Uncle C’s turn he choked up, unable to speak.  Finally through his tears he simply said, “I am so lucky.”

So am I Uncle C.  I am lucky to have had one more Thanksgiving Day with my parents.  I am lucky to have shared one more Thanksgiving Day with Uncle C, who is now 94 years old.  And I feel lucky to have been able to spend one more Thanksgiving Day with so many people I love.  Thank you God for your many blessings.

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I knew taking mom to buy a dress for the wedding this early could pose a problem.  Like a child, she gets very excited about things and wants that instant gratification.  She is excited about the dress.  She is excited about the prospect of wearing the dress and looking beautiful.  But we needed to find her a dress and I felt like we should get it done early.  We were fortunate in that we found a dress at the first place we went on our first outing.  What great luck!  It could have been a very different story.  But we now have a dress and therein lies the problem…

Recently when I showed up for my daily visit she asked, “Well, are you ready for the wedding?”  If this question would have come from anyone else I would not have thought twice about it, but coming from mom it gave me pause.  Hum, what did she mean?  Is she simply asking if I am prepared for the upcoming wedding or did she think the wedding was that night?  “Almost mom,” I answered.  A short time later she asked, “Do you have to go home and wash your hair?”  At that point I knew what she was thinking, but still wasn’t ready to acknowledge it.  “I washed my hair this morning,” I said.  “Oh, so you’ll just have to go home and fix it,” was her response.  I just smiled.

I guess she was bothered that I was still at her house and not getting ready for the wedding when she asked, “Don’t you need to go get ready for the wedding?”  I finally had to tell her that the wedding wasn’t for another month and a half.  “Oh,” she responded, looking confused.

I often wonder what goes through her mind at times like that.  She must be terribly confused.  She was so certain that the wedding was that night.  How can one’s mind process the fact that things you believe to be true are actually not.  That the wedding you believe to be that night is actually a month and a half away, or that the person you see standing before you so vividly is actually not there?  It is no wonder that she has become so quiet, saying very little.  How is she to know what is real or what is not, what is there and what is not, what is true and what is false?  It pains me to see my mother in a constant state of confusion, but yet there is little I can do but love and support her.  And I do.  I love you mom.

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Orange Beach was nice.  Not like last year nice, but nice just the same.  I had two relaxing days enjoying time with just my husband.  That was a long time coming.  I had one day just to myself, an even longer time coming.  Then my family began arriving, first my daughter and granddaughter on Tuesday evening – that’s always fun and lively.  Next came my parents on Wednesday evening and they appeared quite excited to be there.  On Thursday evening my younger daughter arrived, she is full of life and a joy to have around.  The weather was lovely, cooler than normal and very windy and we were all looking forward to spending some time on the beach together on Friday.  Mom was especially excited about going out to the beach – until Friday morning.

The morning started as most do for dad, struggling to wake mom up and get her out of bed.  One look at her face and I knew it was not going to be a good day.  The dementia eyes were glaring at me.  Mom went from the bed to the balcony and fell back asleep.  No amount of coaxing got her up.  Everyone except for mom and dad went out to the beach and had a wonderful time.  When I returned to fix sandwiches for lunch mom had moved from the balcony to the sofa, but was still asleep.  No movement still.  Dad sat dutifully by her side, unable to enjoy the day with the rest of us.  I offered for him to go out and meet everyone at the beach but he declined.

Once everyone was back in the condo, dad left with my husband for a trip to the grocery store.  Mom continued to sleep.  While out, dad talked to my husband about how difficult things had become, how poor mom’s memory was now, how she repeats herself constantly, asks the same question over and over and over, never remembering that it has been asked and answered numerous times.  Then he spoke the words I dread the most, “If things continue the way they are going, within a year she won’t know who any of us are.”  Those words are like a knife to my heart.  I know he feels it too, he lives it.

I guess I had not realized just how much this dreaded disease had progressed since I see mom daily.  I know she has good days and bad days, but reality hit me hard this trip.  A mere year ago mom was so much more alert so this trip to the beach was an eye opener.  Last year mom wasn’t in a hurry to go home when the time came.  This year by Saturday morning mom was anxious, sitting at the door, rushing dad as he packed up and prepared to go.

I guess I should have expected it, but I didn’t.  This trip may have been the last time we all go to the beach together so I’m glad we were able to do it again.  I’ll always treasure my time with mom, no matter where it is…or how much she remembers of it.

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I have never been a fan of roller coasters, yet I find myself on this crazy, never-ending ride. It takes me up, back down and  then turns me completely upside down.  At times I feel nauseous, sick to my stomach, sick at heart, but there is no way off so I just keep holding on for dear life.  And when I think I can take no more, God sends me a gift and this tumultuous ride slows – not stops, but slows.

The roller coaster had been slowly approaching its peak shortly before our trip to Orange Beach, my gift.  Mom was doing so well and I was thinking life could actually be normal again. She had been good for about two weeks so I had hopes that maybe, just maybe, things had leveled out and she would remain on an even keel.  Why oh why do I keep falling for this dementia fake out.  My other issue, of course, is Uncle C.  Four days after leaving the ER he was back in the hospital with pneumonia.  Sitting in the ER with him, waiting for a room to open up he was completely out of sorts.  Uncle C was confused and kept talking about things that made no sense to me.  The scariest was when he looked up at the ceiling and declared that, “They are congregating around.”  Who, Uncle C?  Who do you see congregating around?  Your family?  Your beloved wife?  Don’t leave now, I’m all alone with you here and not ready for you to go yet.

A couple of days later my hubby was busy running a big tournament so I had Uncle C duty alone.  We both have been visiting him at least twice a day.  I spent about an hour and half with Uncle C on Saturday and he mostly talked about dying, about getting his hands on some sleeping pills, “I think about 30 would do it.”  He repeatedly told me that he and Aunt J had made a pact that they would do it together.  He then asked about his pistol that my hubby’s brother now has.   “I think I’ll ask for it back, you know, for protection.”  Hum, I don’t think that’s what you have in mind Uncle C.  But he’s tired and ready to go home – not my home.  He’s ready to join his wife of 71 years.  What do you say to that?  How do you respond when someone you love dearly keeps telling you he’s ready.  I’m not prepared for this!

After leaving the hospital I decided to visit my parents.  As badly as I wanted to just go home for some alone time, something told me to check on mom and dad.  As I approached I saw them backing out of the driveway.  Once dad realized it was me he immediately pulled up and parked the car.  “Where are you going dad?” I asked.  “We were going to get something to eat.”  “Oh, go ahead.  I was just stopping by for a minute.”  Dad insisted that they could wait and gave me his something is wrong face.   We sat on the patio and mom looked good, still clear-eyed.  I’m wondering what’s up.  I followed dad inside and he told me that when he returned from Mass mom told him that I had been by to say that Uncle C had died and I had called for an ambulance to take him out of the hospital but we owed $13,000.00 and my husband couldn’t get away from the tournament to write the check.  Poor ole’ dead Uncle C was going to have to stay at the hospital until Sunday when the tournament was over and my husband could write the check.  (Okay, that is kind of funny in a sick sort of way.)  Of course, dad knew immediately that mom was again delusional.   That same afternoon dad offered me the use of mom’s cell phone since mine was still not working properly.  Mom dug around in her purse for the phone, pulling out a camera, “Here it is!” she exclaimed.  “Well mom, that does look like a phone, but it’s actually your camera.”  Looking confused she continued searching before proudly pulling out a silver lipstick, “Here it is!” she exclaims again.  I knew then that the roller coaster was again headed downward.

For the last several days mom will go sit in the car and refuse to get out until dad takes her to get beignets.  Mom is diabetic and her blood sugar rarely dips below 200 these days.  Try as he might dad cannot get her to watch what she eats.  Not knowing what else to do and unable to get her to exit the car, he takes her to the coffee shop for her beignets.  One day this week, sitting on the patio with the two of them dad declared that he would not take her back for beignets for the rest of the week.  Mom spent the remainder of my visit kicking dad in the shin, kind of like a two year old would do if they weren’t happy about something, only mom didn’t look angry or upset.  In fact, she had a little playful smile on her face – but she just kept kicking him, up until the time I left for home.  This morning dad again found mom sitting in the car insisting that they go for beignets.  “I came out and crazy ole’ Tauzin was sitting in the front seat and wouldn’t get out, so I sat on him!”  mom declared.  Mr. Tauzin is the neighbor with Alzheimer’s that mom dislikes and repeatedly sees.  “I guess she sat on Tauzin’s lap all the way to get beignets,” dad said with a smile.  At least he’s starting to find some humor in it all.

Uncle C has now been in the hospital for a week and still runs fever every night.  When my husband and I visited him this evening he looked awful, again running fever.  “I think this is the end,” he declared.  “I think something is terribly wrong.  Maybe cancer.”  We consoled him, told him things would be okay, that we would bring him home whenever he was ready.  There is a sadness about him, a lost will to live, a  loneliness that we can’t fill.  I feel so awful for him.  And so torn.  I’ve grown so attached to him, have so much love for him, and I’m not ready to see him go.  But then again, I feel very selfish for wanting him to stay in this world when he so wants to be with his wife in the other.

And the roller coaster comes crashing down.  Oh how I hate those damn roller coasters.

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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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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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