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Posts Tagged ‘diabetes’

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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My dad is frustrated.  I see it in his face.  I hear it in his voice.  I can’t blame him.  He snaps at my mom.  He snaps at her in front of people so I know he does it when they are alone.  In fact, a few days ago I heard him.  He thought I was gone, but I heard.  “Bullshit!  I’m tired of this shit!”  It was storming out yet my mother was asking to go to the casino, like she does everyday. Repeatedly.  Dad hates it.  Mom loves it.  Or at least she did before…  It’s in her blood.  Her father was a gambler, her uncles were gamblers.  And so is she.  And every day mom asks to go, over and over and over until dad blows.

His life has become like the movie “Groundhog Day”.  He wakes up every day to the same scenario.  He fights to wake mom up of which he is usually successful sometime around 11:00, he listens to her daily request to get beignets which they can’t do daily because of mom’s diabetes, he tests her blood sugar, he feeds her breakfast, he attempts to get her medicine down and then mom naps in her chair until lunch when the process starts over again – waking her, feeding her, then napping until 3:00, about the time I arrive.  Once I’m gone it starts – her anxiety.  She wants to go somewhere.  She begins shaking, she needs to get out and begins asking to go to the casino.  Dad puts her in the car and drives.  He’s covered every back road around, he’ll drive anywhere just to avoid that damn casino.  But sometimes he gives in.  The only positive about her dementia and her anxiety is that she won’t stay there long.  She doesn’t stay anywhere long.

He wants to get her in Gambler’s Anonymous, but can that help someone with dementia?  Probably not, but I don’t have the heart to tell him that.  I wish I knew how to fix this problem, but I have no answers.  Reasoning with mom is fruitless.  She just shrugs her shoulders when you mention to her how much dad hates it, she doesn’t really care.  “I like it,” is her only response.  At this point she only cares about what is in her mind at that particular moment, there is no thought given to anything else.  The dementia has stolen her ability to be reasoned with.

I worry that the stimulation from the casino, the flashing lights, the bells and noises blaring at her as she sits hypnotically pressing that big red button on the slot machine is further harming her mind.  There is no thought process to it.  There is no exercise of the brain going on, just the same methodical pushing of a button.  I wonder if there has been any research done about the effects of casinos on the elderly, on someone with dementia.  Certainly it has to do more harm than good.

I wish I had an answer to dad’s problem.  I wish I could help with it, but honestly I’m not sure how to extract that gambling gene from mom.   If only gambling was something that was erased from her memory rather than things that are important.  But I can’t fix it, I can’t erase it from her memory.  So dad continues to get frustrated and I continue to feel helpless. And that sucks.

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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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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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After work today my husband and I were running errands when we decided to stop and get a little Mexican food at a local restaurant.  It was early evening and my oldest daughter was with Uncle C so we had a little time to spare.  Not something we have a lot of these days.  Sitting in the parking lot my husband says, “Do you want to call your mom and dad to join us?”  What a sweetheart!  It had not even occurred to me to ask.  I called dad and after some hesitation he checked with mom.  She readily accepted.  My husband and I ordered margaritas and sat back waiting for them to arrive.  About 20 minutes later in come my parents, mom tottering along with dad holding her hand to steady her.  They looked so cute!  Mom had that little smile she now displays, no teeth showing, but one that expresses much contentment.  “I’m so happy you called,” mom said, “It got us out of the house.”  They were so active just one short year ago, going, going, going – out to eat, to the casino, camping, visiting friends – and now they mostly just stay home alone.  Most of their friends seem to have abandoned them and dad (with good reason) refuses to take mom to the casino.  Mom had been doing so well and then the pendulum slowly swung back, leaving her with little to say.  This downturn though has not nearly been as severe as previous ones.  Granted she is not talking much, but her eyes are still pretty clear and alert, not the dementia eyes that haunted her a few weeks ago.

They sat, each ordered a beer with mom, as usual, only taking a sip or two, before we all placed our orders.  I’m not sure mom knew exactly what she was getting as she just pointed to something on the menu when the waiter took her order, but she seemed happy and content when her meal arrived.  We chatted about know nothing things, ate and then my husband, over my dad’s objections picked up the tab.  Again before leaving mom told us how happy she was that we had called.  Such a little thing caused so much joy.  Thank you Lord for my wonderful husband who is always willing to include my parents in our activities.

I’m still praying for that miracle, still giving mom the coconut oil and just enjoying the good times with the both of them.

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I wish I had written down the date we started mom on coconut oil, but being my life is pretty darn crazy I didn’t think to do that.  I do know that mom had been on it for at least two weeks before her last appointment with Dr. L which would make it sometime around the first of April.  What I’ve seen is this.  Initially I noticed no improvement in mom’s condition.  In fact, her mental state continued to deteriorate up until her appointment with Dr. L.  Mom was noticeably confused and lost at her appointment and I think Dr. L was even a bit alarmed at mom’s appearance.  At that time she decided to take mom off of the medication for the hallucinations since this particular medication does tend to cause a person to be lethargic.  We were warned that the hallucinations could return, but as long as they were not causing problems or anxiety, we would just have to live with them.  Dr. L then increased the Aricept, which is the medication for dementia.  She did again stress to us that the Aricept would not reverse the damage done by dementia, but hopefully it would slow the disease that was eating away at her brain.  I believe that taking mom off of the medication for hallucinations was the right decision as she no longer sleeps day and night and has slowly become more alert.  Just recently mom has had a few hallucinations, but nothing alarming.  After a couple of months we noticed that although mom’s mental condition was not improving, it no longer seemed to be deteriorating.  Okay, that’s a good thing and I’ll give credit to the increase in Aricept.

Then something amazing happened.  About a week and a half ago, we began to notice that mom looked much more alert, her eyes were clear and although she would not initiate conversation, she would participate more.  I initially didn’t get too excited because I have been disappointed far too many times.  She generally would have a couple of very good days and then the pendulum would swing back and her mind would return to that far away place none of us could touch.  But this time seems different.  She continues to improve.  Every day she looks better than the day before.  

One day last week when I arrived for my daily visit dad was mowing the grass and mom was sitting on the patio waiting for me.  When I sat down she began to talk, actually initiating conversation.  We sat and chatted like old times.  I mean a real conversation, back and forth, talking about things other than the weather.  At one point I excused myself and went to the restroom.  The word “Wow” just kept coming out of my mouth over and over.  I was startled.  Once dad joined us mom became less talkative, but then readily joined in the conversation and laughed out loud at herself when dad told a story about mom taking out a flip-flop display at Wal-Mart with one of the motorized buggies, sending flip-flops flying and then just kept on going.  What a change!

Last Friday I went crabbing and shrimping with my son and his girlfriend and we caught enough to cook for friends and relatives.  Even though mom is allergic to shellfish I invited them to join us at my son’s house, not really expecting them to accept.  Mom jumped at the opportunity.  “It’s something to get us out of the house,” she said.  They were the first to arrive and mom did great.  She looked around the house commenting on how nice it looked, then sat outside with everyone chatting.  You would never have guessed that her mind was hiding a deep, dark secret.  Friends continued to comment to me on how great mom looked, how she was conversing, laughing, enjoying herself.  After everyone finished eating dad asked if mom was ready to go.  Normally mom gets very anxious and wants to leave early.  She refused, saying she was enjoying herself.  They stayed until after 10:00 o’clock.  And when I arrived the next day for my daily visit, mom was clear-eyed and talkative.  Her dementia eyes were gone.

I’ve also noticed improvements in her coordination and strength.  A couple of months ago we brought back Aunt C’s three wheel bike for mom to ride.  Initially she could not even remember how to peddle and even after she was able to ride she never could steer.  Dad would walk along side as she rode the bike, pulling on the handle bars to keep it straight or to help her turn.  Now, they ride side by side.  How wonderful and cute, an 82-year-old and 78-year-old riding bikes together.    She is also now able to get up from a chair without aid.

Dad continues to give mom her two tablespoons of coconut oil a day and I truly believe that it is the coconut oil working to improve and heal my mother’s mind.  I’ll give credit to the other medication for stopping the deterioration, but it is much more than that.  I believe she is actually, truly improving and I’m not the only one noticing.  I am not naive enough to belive that my mother’s mind will completely heal.  I’m not blind enough to think that there won’t be more difficult times, but at this point the dreaded dementia pendulum has not begun to swing back the other way and I am grateful for that.

 So, do I believe and have faith in coconut oil?  You bet I do!

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I mentioned to my parents last Thursday that I had a mixed doubles tennis match that night and I would be playing with my son.  “Why don’t you come and watch?” I asked.  My parents have never seen me play tennis even though I have been playing for about 25 years.  It’s really not a big deal since I’m just a social player and my game is merely average.  I knew the draw would be my son.  “I’d love to”, mom said.  She has been remarkably alert lately and a bit more talkative.  Dad asked what time and where and they both seemed genuinely excited about going.  Still I really wasn’t sure if they’d actually show up since mom tends to get anxious about things and changes her mind easily.  As I arrived my eyes scanned the parking lot looking for their car and yep, there it was.  When I walked into the pro shop and saw mom and dad sitting there casually chatting with my son my heart filled with joy.  I positioned them on the balcony near the court where we would be playing and away I went to play my match.  Looking up I saw mom with her cute little sunglasses alertly watching and dad right beside her.  Neither she nor my dad know anything about tennis – no idea how to keep score or even if we were winning or losing, yet they never moved, they stayed until the end.  What a miracle!

When the match ended (yes, we won), I looked up to see dad helping mom down from the stool and holding her hand as they slowly walked down the pro shop ramp.  I quickly gathered up my things and started after them.  I must have had a huge grin on my face because as I ran by one of the members he shouted, “You sure look happy, you must have won.”  As I pointed to my parents I responded, “That’s my mom and dad, I’m trying to catch up with them.”  And as an after thought, “Yes, I did win.”  But the joyfulness was not because of the win of a silly tennis game, it was about seeing my parents enjoying a little bit of normal life again.

 Enjoy the clear-eyed days.

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