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Posts Tagged ‘personal stories’

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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The day we have been dreading arrived unexpectedly.  We recognized that mom was on the downside of that horrible dementia cycle, but it still caught us by surprise and took my breath away.

Dad called around 9:30 one Sunday evening. By the tone of his voice I knew immediately that something was very wrong. “Your mom went to bed as soon as we got home from your house.  I just went to check on her and she was sitting up on my side of the bed.  When I walked in she said, ‘My husband fell in the shower.  I tried to help him up, but I couldn’t.  Can you help him?'”

Dad, being the kind soul that he is, went into the bathroom and returned a short time later to let mom know that he had gotten her husband up. She had again pulled off her colostomy so he took her to get cleaned up. As dad was helping mom back to bed she again asked about her fallen husband, “Is my husband alright? Is he hurt?” Dad responded, “No, he’s fine. He’s not hurt.”

Dad’s voice cracked as he relayed what had just happened. His heart was breaking and so was mine.

Since that night no further instances of mom not recognizing someone close to her has occurred. For that I am thankful. But I am afraid that this was a mere glimpse of what is to come and it saddens me deeply.

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Mom has dementia, that’s no secret.  I inform all medical personnel that she comes in contact with – doctors, nurses, ambulance attendants, etc.  And I informed Lifeline when we decided to go with their company.  Lifeline, for those who are not familiar with them, is a medical alert company. If mom should fall, which she does occasionally, or if she should need help and unable to reach dad, she can push the button on the gadget she wears around her neck and Lifeline will respond. The commercial on television for Lifeline shows elderly people on the floor, pushing the button and saying, “I’ve fallen and I can’t get up”.

Mom has on occasion (more than one occasion) pushed the button while lying in bed and announced to the Lifeline attendant that she had fallen and couldn’t get up. I guess she forgets what the gadget hanging around her neck is for, starts to play with it and when a voice comes over the speaker asking if she needs help, she mimics the commercial. In the past the Lifeline employee has called dad to let him know that mom had fallen. Once dad finds mom tucked in bed he lets the Lifeline people know that all is well and no further action is needed.

So far things have worked well. I have explained to them about mom’s dementia, explained that she has delusions and hallucinations and that unfortunately these calls to them will continue. There’s really nothing we can do to stop them. They appeared to understand, purporting to put a large notice on the top of her file stating that she is a dementia patient and to always call dad or me before contacting emergency services. It has worked well for over a year, but somewhere along the way it changed.

One evening recently mom went to bed early and dad was up watching television when he heard the walkie-talkie that he keeps on the side of the bed go off. “Do you need something, Honey,” dad asked. All he heard was whispering. “What? I can’t hear you.” Mom replies a little louder, “There’s a man in the room!” “No, there’s no man in the room,” dad says as he hurriedly walks to the bedroom. He arrives in time to hear Lifeline say, “The police are on the way.”

“No, no, there’s no man here,” he tells the Lifeline operator.

“Who are you?” asks the operator.

“I’m her husband,” dad replies. “No one has broken in the house.”

“Okay, we’ll cancel the police.”

Shortly thereafter the house phone rings. It was the police. “Please step out of your front door.” My 85-year-old father steps outside and is surrounded by police, one of which is holding a flashlight in his face, and an officer with a police dog is in the backyard. After explaining the situation, he is allowed to go back inside.

The next day dad relayed what happened to me. I gave Lifeline a call to reiterate the fact that mom has dementia, has hallucinations and will at times see people who are not there and push her button. I requested again, nicely I might add, that my dad be contacted first, before emergency services are called since he lives with mom in the same house. They agreed.

A couple of days later the same scenario – mom in bed early, dad watching television when there’s a knock on the door. The ambulance attendant standing at the front door informed dad that Lifeline had contacted them stating that my mother had fallen and injured herself. Dad knew nothing about it. He found mom sitting on the toilet unable to get up. Apparently mom pushed the button and when Lifeline responded she panicked and told them that she had fallen. When asked if she was injured mom responded that she had hurt her neck. About an hour after the situation was cleared up Lifeline called me to let me know that mom had fallen, an ambulance had been called but she was fine. No call was ever made to my father.

Once again, a simple phone call to dad could have eliminated the ambulance showing up needlessly. Instead, dad will now be saddled with a hefty bill from the ambulance provider which will not be paid by Medicare or their supplement since mom did not get in the ambulance.

Again I called Lifeline and I wasn’t quite as polite as the last time. In fact, I was pretty darn irritated and some poor woman got the brunt of my irritation. I just could not understand why suddenly things had changed and emergency services were called before my father or me. A supervisor came on the line explaining “protocol”, telling me that if a client requested assistance it was “protocol” that they were required to send some type of emergency services. I again explained about the dementia that plagued mom. I again explained that this would continue to happen and a call to my father who lives in the same house with their “client” could clear up any misunderstandings. I asked when their “protocol” had changed since for the last year my father was always called first. After heated discussions I informed the supervisor that we wouldn’t be needing their services anymore. I was fortunate enough to find a local company that is more understanding and willing to work with us.

So, bye-bye Lifeline. Good riddance.

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Uncle C finally did it.  He took the plunge.  He jumped over the edge into the darkness, into the great unknown.  He had been talking about it for a couple of years, wanting it, yearning for it.  The “it” being death. But yet he was scared, scared of that unknown.

Uncle C talked about death often. Daily he’d tell us that this day would probably be his last. He talked about wanting to get his hands on some sleeping pills so he could just go to sleep and not wake up. Honestly, I don’t think he would have ever done it because of the fear that plagued him.

One second Uncle C was “waiting for the hearse” and the next he was trying to talk my hubby into bribing someone at the DMV so he could get his driver’s license back. Up until the very end Uncle C held out hope of driving again, traveling to those far away places that he and his beloved had seen and loved.

Uncle C’s heart and lungs were failing, but he never believed it. To him, he still had the heart of an 18-year-old. But when the end finally came for him, Uncle C went to sleep and didn’t wake up. It was a very peaceful death. He was surrounded by people who loved him to the end – me, my hubby, my daughter and a wonderful caregiver.

We will miss the old fellow. But he had 95 terrific years of life. What more can one ask for?

So…to Uncle C I say, it was an honor and a privilege seeing you through the last few years of your life. I have learned much from you. Go forth and join your beloved wife of 70 years and find peace. I love you Uncle C.

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After yet another stay in the hospital, Uncle C’s doctor informed my husband that short of a heart/lung transplant (which they would never perform on a 94 year old), Uncle C’s condition will only worsen. Uncle C has congestive heart failure and COPD. Uncle C, of course, doesn’t believe there’s a thing wrong with his heart or lungs. In fact, he continues to tell people that he has the heart of a 17 year old and only has the pacemaker for back-up.

After hubby had a heart-to-heart talk with Uncle C this week regarding his condition, Uncle C responded with, “Well, Dr. M doesn’t think I have much time left so we better hurry and get my driver’s license back!”

You gotta love him!

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“Your mom’s having a really bad day.  I could barely wake her up, she refuses to eat or take her medicine.  I told her to go get dressed and she came back with two pairs of pants and no blouse.  I had to dress her because she didn’t remember how to do it herself.” ………. “I hate to bother you, but I think I need to go to the hospital.  I keep getting really dizzy and I almost fell.  And I think my blood pressure machine is not working cause it won’t register.” ………. “I told your mom to go get ready for bed.  She asked me to go with her because she didn’t know what to do.” ………. “This is Lifeline.  Your mother has fallen and we can’t reach your father.” ………. “I’ve been having chest pains since yesterday and my arm hurts.  I think I need to go to the hospital.” ………. 1:00 a.m. – “This is Lifeline.  Your mother has fallen and your father cannot get her up.  He asked that you go over and help.” ……….  “Where are you?  Your mother is having severe stomach pains and wants to go to the emergency room.”– these are just a few of the phone calls I’ve received in the last couple of months.

I can’t say 2013 is off to a great start.  Dad has had two hospital stays, one for dehydration and one for chest pains.  The blood pressure machine wasn’t broken as he thought, his blood pressure was just too high for it to register.  He had an angioplasty and thankfully only one small blockage was found near the stent he already has.  It is being treated with medication.

Mom was hospitalized for several days with an obstruction in her colon.  During that stay she was given morphine.  She was unresponsive and completely out of it for days afterwards.  She has not been the same since.  Her good days are fewer and bad days more severe.  The middle of the night phone call from Lifeline about her fall resulted in a black eye, swollen cheek and half of her face a deep purple-black color radiating down her neck.

And I anticipate a trip to the hospital with Uncle C this evening.  If not tonight, soon.  He’s been once this year, but has already warned us that he thinks he may need to go tonight.  Of course, he always waits until the middle of the night.  I guess he wakes up struggling to breath and is frightened.  I would be too.  I’m just waiting for the middle of the night phone call that is sure to come.

Then there was the phone call from my dermatologist’s office at 5:40 one evening … “This is Dr. R’s office.  The spot removed from your back was a basal cell carcinoma.  We need to schedule an appointment to have it removed.”  My dermatologist had assured me that the bright red spot that seemed to have appeared overnight was nothing to worry about.  Not my luck!

Is it no wonder that I’ve come to dread the ringing of that damn phone?  I feel a sense of panic every time my father’s number appears.  I freeze.  I stop everything.  I answer it no matter where I am or what I’m doing.  Sometimes it’s as innocent as, “I just wanted to see if you won your tennis match.”  Yet still I my heart skips a beat and I can’t help that feeling of doom.  I keep telling myself, “This too shall pass”, but in actuality, probably not for quite a while.  So for now, I live in fear of  that ringing phone.

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Recently, Hubby and I needed to travel to Uncle C’s hometown to take care of some business.  Yes, Uncle C, our 94-year-old relative is still with us.  He has good days and bad, one moment he is dying and the next he is talking about driving to Alaska, taking an Alaskan cruise and driving back.  Our destination was this tiny town in Illinois.  The nearest airport was 2 hours away and the closest hotel room was 40 miles.

As we left the airport and the hustle and bustle of the big city, the scenery quickly changed.   There was only farmland as far as the eye could see.  Although we were in the dead of winter, it was beautiful – peaceful.  There were no busy highways, no high-rise buildings, no traffic jams or cars racing to beat you to the next light.  I felt as though I had taken a step back in time.    This was the heartland they talk about and I loved it!

We witnessed things we don’t see back home – a horse-drawn carriage crossed us, small towns with a population of five hundred, maybe a thousand.  There were no McDonald’s or Burger Kings, no malls or superstores.  There were mom and pop restaurants and stores like in the days of old, where everyone knew their neighbor and no one locked their doors.

We also saw things that made us laugh, like the gas pumps in front of the old store that looked like three little aliens staring at us.

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Or how about this sign.

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We don’t see that where I live!

But as much as I loved it, there are just things I would have trouble giving up – like the warm weather of the South.  Twenty-two degree temperatures just don’t work for me.  I’m a little Southern girl through and through and I just don’t handle cold well.  Or the cell phone service – no 4G where we were, it was “E”.  What is that?  I could not even get a picture to go through.  Call me spoiled but that E was just plain sloooooow.

But the people were friendly and helpful and we made it home safely.  I am thankful that we were given the opportunity to visit Uncle C’s hometown, but I’m  happy to be home, even with the hectic life I’m living.

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