Posts Tagged ‘elder care’

My brother Jim actually delivered the funeral talk and was able to include some of his own personal experiences that he had in visiting Clara in the past, and during her last hospital stay.  During the funeral talk, at times it looked like Clara was breathing, her chest rising up and down.  I had to convince myself that my eyes were playing tricks on me.  The talk was finished, and the funeral director instructed the family members to pay their last respects.  As Andy walked out, he burst into tears and cried loudly.  Of course I was at his side trying to support him.  A co-worker of his was standing in the hallway, and he stepped toward Andy to hug him and Andy embraced him tightly.  It was sad to see him so broken.  What was going through my mind?  I was wondering if I looked heartless because I was not crying.  I was trying to think what was expected or acceptable behavior from me.  Should I cry too?  Would that help Andy or make it about me needing comfort from him?  As we walked down the steps to the family vehicle arranged by the funeral home, the pressure was over.  Once out of the funeral home and into the vehicle, Clara’s children were pulling themselves together.  It was nice sitting there so we could observe all of our friends as they were coming out of the funeral home, some of which we did not notice while inside.  After the cemetery, we went back to my mother’s house for a meal.  As the day came to a close, one of Clara’s daughter’s hugged me and thanked me for everything.  I was not sure if that was everything related to the funeral or everything related to the care I provided.  At that point, it was the first thank you I had ever received from her, so I decided to take it as a thank you for everything.  My entire account is available at http://www.createspace.com/3469034 or at Amazon.com, just type in the title of my book, LIFE WITH CLARA – ONE CAREGIVER’S JOURNEY.  I appreciate all of your comments and wish all caregivers the strength they need to cope each day!  


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Vacation time proved to be a challenge for my family.  Clara’s other children worked full time and did not always want to use their vacation time to care for their mother during that week.  Sometimes they were able to work things out, other times I would have to make the arrangements for Clara’s care.  The difficulty was being able to find someone that was willing to start their day with Clara at 8:00 a.m. and end their day at 11:00 p.m., with lots of stuff in between, including transportation to and from dialysis.  Since Clara was not always stable on her feet, people were afraid she would fall so did not feel comfortable taking on the responsibility of getting her to dialysis.  The Department of Aging provided transportation, but you had to be able to walk from your door to the van without assistance.  At least I did not have to worry about finding someone to bath her; the aide would still come for that.  Planning time away never was easy.

One time, my brother and sister-in-law, Tom and Barb, invited us to go to New York City with a group of friends to see a Broadway show.  We were to leave Friday afternoon and return Sunday night.  Andy and I were excited about the trip, and I was also excited at the thought of having an entire weekend off from Clara.  This time her daughter was able to take Clara to her home to care for her.  My oldest son, Mike was on Spring break and flew down to Georgia to visit a buddy.  Zack was going to stay with friends.  We could actually go away worry free and just enjoy the weekend.  We drove over to pick up Tom and Barb and before we were out of their driveway my cell phone rang.  It was Mike asking me how our health insurance worked out of state because he thought he broke his wrist.  I gave him instructions on going to the emergency room.  At first Andy was getting aggravated by the apparent change in our weekend, but I calmly told him there was no reason to change our plans.  Mike was five states away, there was nothing we could really do for him, and that he was with friends and a broken wrist was not the end of the world.  My preference would be to go with him to the emergency room, but since that wasn’t possible we continued on with our New York trip.  I still felt really good about getting away.  On the way, after several unsuccessful attempts to reach Mike by cell phone, I started to worry.  So I called one of the mother’s whose son also went on this trip, and asked if she had heard anything.  She had not, but promised to call her son and call me right back.  When she called me back she said things were not good.  It appeared that Mike broke his left wrist and right elbow and was in a good amount of pain.  She said she told her son to be sure to have Mike call his mother.  The tone of our carefree weekend was changing.  When I hung up the phone I started to cry and say, “If he has to go to the bathroom, he can’t even wipe his own butt!”  Wonder why that was the first thing that came to mind?  By now we were only an hour away from our New York hotel, and we were the transportation for Tom and Barb too.  At first I wanted to turn around and go back home to Maryland, but Mike was still in Georgia.  We had passed Newark International Airport and my husband said if needed, we would fly back home.  I only cried for maybe 20 seconds, but it was enough to change the entire tone of the trip.  Once I spoke with Mike, he sounded good, but said he just wanted to come home.  I tried to make arrangements with the airlines, unfortunately a strike was looming and there were no available seats until the next morning.  I worked off and on through the night and was able to get Mike a return ticket home.  Tom and Barb kindly agreed to cut their trip short and drive home with us Saturday night after the show we already had tickets for, since no one else in our group had room in their cars for them.  I then called my other brother Jim, who lives next door to me to explain the situation.  Mike’s plane would land before we could get home, so Jim quickly agreed to go to the airport to pick him up.  I knew his wife, Maria, would smother and mother Mike, just the way I would want to if I was there.  Before we left New York, Barb started with a migraine headache accompanied by severe nausea.  Similar feelings of having to choose one person over another person that I dearly loved resurfaced.  It is such a no win situation I felt in, it left my entire body tense and anxious.  I was also tired from being up the night before trying to make Mike’s travel arrangements, and then sight-seeing all day long.  Barb was in the worst condition and that poor girl climbed into our back seat armed with a trash bag in the event she vomited.  I wondered if she was feeling about me the way I felt about Clara the night of Mike’s car accident when I had to send him off to the hospital by himself while I went to pick Clara up at dialysis.  We got home around 4:30 a.m., and Mike was sound asleep in his bed with gauze and ace bandages wrapped around both arms.  To me he looked pathetic.  I knew Clara would be home in just a matter of hours, and I did not get the break I so desperately wanted and needed.

I was Clara’s full time caregiver for 8 years.  I mentioned earlier in this blog that I am posting exerpts from my book, Life with Clara – One Caregiver’s Journey.  My goal has always been that my experience and honesty could help others in this life changing role.  My entire account is available at www.createspace.com/3469034

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Before she started receiving dialysis, you could stand in front of her and wave your arm and she couldn’t see.  Even with her improvement, the doctor said he doubted Clara would live more than two years on dialysis since she neglected her health for so long.  Dialysis would last around three hours, and after she was settled in her treatment chair, I was not allowed to stay.  I was grateful for that rule, because if not I think Clara would have expected me to stay to keep her company.  I found a small portable CD player and started getting some CD’s of artists she enjoyed.  After getting her settled in her treatment chair, I would hook up her CD player, put the headphones on Clara and adjust the volume for her.  Sometimes as I was leaving, she would start singing along and it was a pleasant way for me to leave her, in a good mood.  Often when we arrived at dialysis at her appointment time, they were not ready for her.  Usually problems arose on earlier treatment shifts which would make things run behind.  Clara would get so aggravated when she had to wait, which always struck me funny because what else did she have to do?     I’m a friendly and outgoing person, so I would get chatting with other patients that were waiting, or patients that had finished their treatment, but were waiting for a ride home.  Clara’s hearing wasn’t that good, but I would try to draw her into the conversation to make her feel included, and she loved that.  We became friendly with quite a number of patients.  The only downside was the days we arrived and they were running on time.  After I would get Clara situated, these older patients still expected me to sit and visit with them for a bit.  Some were still in the treatment area and I would stop by for a brief hello on my way out, but the ones sitting in the waiting room were a bit harder to get away from.  Sometimes, it would take me another half hour just to leave.  There was one patient there named Martin, he was just in his early thirties.  Martin was very kind hearted.  Clara and I both felt so bad that such a young man had such serious health problems.  He was usually finishing treatment as we were arriving, but would always stop and find out how Clara was doing.  One miserable, rainy day when I was leaving, I noticed Martin standing at the bus stop across from the dialysis center.  I stopped and asked where he was going, and he said to the light rail station.  That was less than ten minutes away, and I could not leave in good conscience with him standing in the pouring rain without any rain protection.  He was grateful for the ride and told me that each Friday he took the light rail into Baltimore City to stay with relatives for the weekend.  Later that evening I told my husband what I had done and asked if he minded if on Friday’s I would ride Martin to the light rail after dropping his mother off.  Andy knows I like to be helpful, so he did not object.  Martin seemed appreciative and took my kindness in the way that it was meant.  Unfortunately, after some time one of the nurses asked me if Martin was my boyfriend.  I was humiliated that someone that saw me a couple of times a week bringing my mother-in-law to dialysis would think I was using it as a place to pick up a man.  After that I was not comfortable taking Martin to the light rail station, but also was too embarrassed to tell him why.  On some Fridays when the weather was nice I would ask my oldest son Mike to take his Grandmother to treatment. That was always a welcome relief from the Martin problem.  Even then, some days that same nurse would ask, “Did you see your boyfriend Martin today?”  I could only hope she was kidding. 


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In a world of increasing health care problems, with elder care and caregiving growing perhaps as fast as gas prices- having good health insurance means a lot more now than just having a low copay.  It’s clear that the kind of health insurance you have has a huge impact on the the kind of care you receive.  But what defines “great health insurance”?  And nowadays is having even the best insurance enough?

My mom worked as a R.N. for the city for over 17 years.  I had always heard from both her and her coworkers that “they had the best health insurance”.  When my mom suddenly became sick, I assumed that her insurance would cover all her needs and that she would receive the best possible care.  Reality first set in early on when my mom was in an acute rehabilitation hospital receiving treatment for a stroke.  The Case Manager met with me to discuss her benefits and specifically how long her insurance would pay for treatment.  Even her Case Manager said her coverage was in fact “as good as they come”.  With stroke, like many other illnesses, frequency & longevity of treatment can play a big role on how well a person can recover.  In short, my mom’s insurance policy would cover the following:

         -60 Days in an Acute Skilled Nursing Facility
         -60 Days in a Long-Term Skilled Nursing Facility
         -120 Days of Home Health Care
         -60 Outpatient Visits

Great!  This coverage sounded good to me.  I felt instant relief!  Sounds too good to be true, right?  Well, it was. (more…)

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