Clara’s dignity equals no dignity for me!!!

Life goes on and now I had to figure out how to get Mike to all of his college classes since he could not drive.  The dialysis center was great about adjusting Clara’s time to work around Mike’s classes.  I was the home health aide for bathing Mike in his swim trunks.  I would start with taping plastic bags over his casts, and fortunately I have a large shower stall in my bathroom.  Since Mike is a half of foot taller than me, I would stand on a step stool in the shower, while he held his arms high above his head, I would wash his hair.  He would yell that the water was running in his eyes and as I would wipe the water away, he would complain that I was wiping his eyes the wrong way.  I was ready to place both him and his grandmother in a nursing home!  Mike healed ahead of schedule, and we were both glad when the casts came off two weeks early.  At first, going back to just having Clara to care for seemed easier.  Soon, summer was here and we were off to the beach for our annual week long trip with my side of the family.  Arrangements for Clara were made and I must admit, getting up each day without thinking about her care was wonderful.  I noticed by the end of our trip, a feeling of dread came over me at the idea of returning home.  The first morning back, Clara had an “accident.”  While cleaning up poop was never my favorite activity, it was especially annoying this day.  Later that day my sister Kathy called to see how everything was back at home, and I was complaining about Clara’s accident.  Kathy said she had the perfect solution.  The next time I had to clean Clara up, just have her sit on the toilet, and take the toilet brush down her butt crack and back up again.  She said Clara would never have another “accident.”  Of course she was kidding, but the mental image was hysterical to me.  There were times after that when I would be cleaning Clara up, I would get that mental image of using the toilet bowl brush, and I would have to fight back from laughing.  Another time, Clara had made quite a mess, and I was on my hands and knees cleaning poop out from in between her toes.  Unknown to me, Clara in her desire to help, picked up the wash cloth off the shower shelf and slapped it in between her legs to clean that area.  To my horror, dirty water splashed on my face and in my mouth.  As I looked up she was pulling the washcloth back out and I pleaded, “No, no, please, give me the washcloth!!!”  My eyes felt as big as saucers and I could not believe what had just happened.  I was trying to spit out whatever was in my mouth and wipe off my face without using my dirty hands!  Once it was all done, and I thought of how it must have looked, I found it all funny.  Later I was relating to my mother what happened, but she did not find the humor in it.  Her protective mother instincts came out and expressed anger towards Clara.  I told her that I try to help preserve Clara’s dignity when she has her “accidents” no matter how I am feeling on the inside.  My mother said, “I think in preserving Clara’s dignity, you lost your own.”  I shrugged it off, but the next time I was cleaning out in between Clara’s toes (with the washcloth far from her reach), I thought to myself, ‘My mother is right, I have no dignity.’  Then I thought of Kathy’s suggestion with the toilet bowl brush, and some how, those two things made the job of cleaning up Clara’s mess funny to me.  Some time later I told my mother how her words actually provided humor to me when I needed it, and she did not even remember saying it.  On one hand I felt that I wanted to protect Clara’s dignity, but on the other hand my way of coping was to relate my experiences to family members or friends in a comical way.

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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Back from New York…

First thing Monday morning after taking care of Clara, I was able to find a highly recommended orthopedic surgeon to take Mike to.  Due to his swelling, they did not put casts on Mike at the emergency room in Georgia.  He was instructed to see a doctor as soon as he got home.  Being considered an emergency patient that was being squeezed into an already fully booked schedule, I felt completely nervy asking if they could work with me around my mother’s- in-law dialysis schedule.  Fortunately, the doctor’s secretary was very understanding and worked Mike in right after we dropped Clara off to dialysis.

Before Clara, Mike and I left, Mike managed to put on swim trucks, climb into the bathtub holding his arms up so the gauze would not get wet, and I helped bathe him.  I kept teasing him calling him “Grand mom” and he teased back saying I’d better be careful, or he would ask for some butt cream.  He had not shaved his face while he was away, so that duty was left to me.  Of course with his age (19), I would leave the bathroom for him to dry off and get dressed.  From the bathroom, I answered the phone to find out that Clara had an “accident” and needed my help.  I went over to take care of that mess and finish getting Clara ready for dialysis and the three of us were off.  It ended up that Mike had broken both of his wrists that required casts.  His elbow was not broken, and the injury there did not require a cast.  We were able to get to dialysis with both of Mike’s arms in casts just as Clara finished.  Once home, Zack helped me get his grandmother inside, who was ready for her hot tea and her evening snack.  As I went to my stove to put the water on, that is when Mike announced he was hungry.  I knew the care Mike needed was temporary, so it wasn’t as overwhelming as it sometimes felt like with Clara.  Even at his age, I had some guilt for sacrifices my children had to make.  So this was a good opportunity for me to give him top priority.  Mentally, I so needed that break from Clara that weekend.  Technically, I did get a break from her, but it did not feel like it since I was worn out from trying to get my son home and myself home to him.

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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This is my break?!

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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Help arrives…

One thing that I will always be grateful for is our local Department of Aging.  When Clara’s health first started to decline, it was suggested to me to put her name on a waiting list for future help if needed.  Around the time Clara started dialysis, her name came up on the list.  A nurse came to the house to assess Clara’s needs and it was determined she qualified for help through their program.  It was a big disappointment when I realized that only moved Clara’s name onto a second list, help was not immediately available. There were many names ahead of Clara’s that were also approved for assistance.  It was another year before I received a phone call asking if Clara was still in need of help.  I was eager for any help that could be provided.  The nurse came back to reassess Clara’s needs, and determined she qualified for a home health aide that could come three days a week to bathe Clara and do some light housekeeping.  Out of everything I did for Clara, giving her a shower was what I hated the most.  With the aide coming three times a week, I asked Clara’s daughter if she could shower her on Saturday when they got back from their afternoon outing.  That only left three days that Clara would need to wash up at the sink.  I did a happy dance of excitement at the thought of retiring from shower detail!  Things were actually getting better.  At first it seemed like as soon as Clara would become comfortable with her home health aide, they would quit or change their hours.  Since they came on Clara’s dialysis days, we did not have a lot of flexibility on what time they could come.  Sometimes, there would be several weeks between health aides coming.  After getting a break from bathing Clara, I would dread it even more going back to it.  In time we were assigned a kind hearted, hard working home health aide named Alice.  Alice would always go the extra mile.  In time, she and Clara developed a friendship and Alice always had a listening ear for me if I had concerns about Clara I wanted to share.  Both Clara and I developed a deep fondness for Alice.

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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