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Posts Tagged ‘caregiver’


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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By now, Mike was engaged, and his wedding was about a month after our beach vacation.  His fiancée, Tanya, was going to join us for the weekend at the beach, and then we would have Mike with us for the rest of the week.  We realized what a turning point we were in our lives, and were really looking forward to this vacation.  Two weeks before our trip, I found out Clara’s one daughter and husband at the last minute were able to book a trip to Italy.  It amazed me how their vacation time again coincided with ours.  The other daughter was going to be in town and she was going to care for her mother while we were gone.  Since Tanya could only join us for the weekend, she came up to our house Friday night after work so we could get a very early start on Saturday to the beach.  I explained to Clara that I would be coming over earlier than usual and that her daughter was going to come later in the morning to pick her up for the week.  When I went over in the morning to care for Clara before leaving, I said my usual, “Good morning.”  She turned her head to look out the window.  I thought maybe she didn’t hear me so I repeated myself and she turned her head again.  I could not believe what a baby she was being, not speaking to me because we were going away and leaving her.  As I stood there in the kitchen in my disbelief at her behavior, looking at her in her Lazy Girl chair I realized she kept turning her head straight then to the left.  Then I realized something was very wrong, it was as if her head was involuntarily turning back and forth.  When I stood in front of her I knew, she had had a stroke.  The first time when she went into a diabetic coma I incorrectly thought she had a stroke, but this time I was absolutely certain.  She had a blank stare in her eye, and drool was coming out her mouth, her head kept turning back and forth and she made mild grunting noises.  At that moment I thought all of my care, all of my hard work came down to this, Clara was now a vegetable.  I remembered reading articles on stroke victims that they can hear you even if they cannot respond.  I calmly told Clara it would be okay and that I would get her help although I was shaking on the inside.  I used a tissue to wipe her drool away, and my heart just broke seeing this shell of a woman.  This situation was pathetic.  I told her I had to call for help, but I would be right back.  I didn’t want her to hear me calling 911 on her phone and hearing me describe her status, I thought it would be better to use my phone.  When I walked through the door to my side of the house, Mike and Tanya were getting ready to head out to the beach.  I explained what was going on and asked them to go and watch Grandmom while I called for help.  I didn’t know if she could fall out of her chair or not, and instructed them to talk gently and calmly to her.  After calling for help, I informed my husband who was upstairs finishing packing his clothes for the trip, and then called her daughter.  I went back over to Clara’s, and Mike asked if they could still leave for the beach.  At first his question took me aback, your Grandmother is sitting in the chair grunting and unable to move and you want to go to the beach?  I thought for a moment, and realized whether he stayed or left, it would not change the fact that Clara was now a vegetable.  I asked if he could stay until the ambulance came to help keep the dog out of the way, then he, Tanya and Zack could leave.  He readily agreed.  Once the paramedics arrived, they tested her sugar and the level was fine, which confirmed my belief it was a stroke.  As they loaded her on the stretcher and got her in the ambulance, Clara’s grunting got louder.  Minutes later her daughter arrived, with the ambulance still sitting in my driveway, I was getting worried that she was in some sort of distress.  I knocked on the back of the door of the ambulance and they said they were just trying to get an IV started.  With Clara’s condition from dialysis, getting IV’s started was always a challenge.  Clara was mumbling now, and didn’t seem as vegetative.  From my description on the phone and seeing Clara for herself, her daughter said, “She’s not that bad.”  She was just moments earlier.  Andy and I drove in one car, her daughter wanted to drive over in her own car, and we followed the ambulance to the hospital.  By the time they got her settled in and allowed us back, Clara was back to looking vegetative.  It was hard for Andy and his sister to witness.  Clara was paralyzed on the right side, when the nurse picked up her arm it was as if it was dead.  I secretly wondered if Clara was going to be one of those people that lived for years as a vegetable since her heart was strong.  I knew I would not be able to completely pick Clara up to care for her as she would now need.  The thought of her in a nursing home in that state made me sick to my stomach.  Tests were run and it confirmed that she had a stroke.  A neurologist was called in and treatment options were explained.  A clot busting medicine could be given, but since she was already on blood thinners, she could bleed internally causing her death.  Without this medicine, she would remain in a vegetative state the rest of her life.  Even though I was the most involved in Clara’s daily care, I felt it was important for me to yield to Andy and his sister, they should make the decision.  They both agreed there was no choice and approved this medication to be given to their mother.  There was only a small window of time that this medicine can be used following a stroke, and we were just about out of time.  The doctor called the pharmacy to quickly get this medication down to the emergency room, and the nurse started the necessary preparations for Clara to receive this medicine.  The doctor also ordered a blood test.  The nurse inserted the needle to withdraw the blood and when she attached the tube to collect the blood, Andy noticed his mother scratching her head with her right hand, which moments earlier was completely lifeless.  Apparently, the vacuum effect of this sealed tube for collecting her blood moved the blood clot and blood flow was returning to Clara’s brain.  Just then the clot busting medication arrived and the doctor halted its administration for a few moments to observe.  Within minutes Clara was speaking, her speech was quite slurred, but her thoughts were coherent.  Her paralysis was mostly gone, but she was more limited on her right side than before this stroke.  She said she heard everything the paramedics were saying and they were annoying her because they were hurting her inserting the IV.  We were all in disbelief.  The doctor said Clara would be admitted to the hospital for several days.  I knew I had even more work ahead of me once she was discharged and I was thinking that I really would like to relax on vacation before having to face that.  How could I ask Andy if we could still go on vacation with his mother lying in the hospital hours after suffering a stroke?  I excused myself so I could go get a cold drink, it was now five hours since I had awakened and had nothing to drink or eat.  I needed to think.  On my way to the cafeteria I was racking my brain as to how to approach the subject of our vacation without sounding like the most selfish person in the world.  When I came back to the room, Clara was resting comfortable, and her daughter had gone to call home to inform her family as to her mother’s status.  Andy said to me, “I don’t want to sound rude, but I still want to go on vacation.”  Ahh, my dilemma solved!  I told him we knew that she would be getting care at the hospital, and with cell phones, we were only a phone call away, and less than three hours away at the beach.  When his sister returned we told her we were going to head out soon for our vacation, and she had the same look I think I had when Mike first asked me if he could still go to the beach.  Clara woke up and I made sure she understood what was going on and she did.  She was in a great mood.  We told her we were going to head out for the beach and she said to go and have a good time.  On the way to the beach I would get calls here and there with questions about Clara’s medication or history so I still felt connected to her care.  I battled with feelings of guilt for still going on our trip.  The next morning I called the hospital and Clara was in the intensive care unit.  The nurse offered to take a phone over to Clara.  It was unbelievable, Clara wasn’t even slurring her speech anymore, her speech had returned to normal.  As word spread of Clara’s stroke to our friends, some went over to the hospital to check on Clara.  None could believe how chipper she was.  My sweet Clara.  She needed to stay to receive some intensive physical therapy before returning home since the use of her right arm was still limited.  Her daughter would go to work each day and then stop at the hospital on her way home and stay for hours.  I know it had to be hard on her, but I thought of all the times I had that duty.  I wasn’t feeling mean spirited about it, but the reality was the bulk of the work was going to fall on me once she was discharged.  By Thursday we still had two days of our vacation left, but by now I felt like I was being greedy.  I told Andy that I just didn’t feel good about staying any longer at the beach since we had not seen his mother in five days.  He said it was getting hard on him too, so we cut our trip short and headed home.  My sons stayed at the beach.  We drove right to the hospital and Clara was delighted to see us.  She asked why we came home early and we told her it was because of her and she laughed and said, “No really, why did you come home early?”  I don’t think she ever completely believed she was the reason we came home early, which perplexed me based on the care we regularly gave her.  By now Clara had been moved to the rehabilitation section of the hospital.

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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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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My problems resulting from the car accidents I was in were getting worse.  I even went under some painful procedures to help.  It would only take one incident of Clara having trouble getting out of her chair with no one else being home to help and I had to help lift her up that would undo all the progress I made.  I finally sat down with Clara, and as kindly yet firmly as I could explained that I wanted to take care of her and never wanted her to go to a nursing home.  I told her I had observed when the physical therapist was coming, she made quite a bit of improvement, but after the therapist released her from her care, she would refuse to do any of the exercises, most of which were done while sitting in her chair.  Clara just listened.  I told her in order for her to stay living with us I required three things from her; that she be able to get up out of her reclining chair by herself without assistance, be able to get out of my car without me pulling her up, and to be able to get off of the toilet by herself.  I asked Clara if she felt that was unreasonable and she said it was not.  Then I added that if she could not do any of those three things, I would no longer be able to care for her because my health was being compromised.  Before I finished my sentence Clara was marching her legs in place while sitting, one of the exercises she previously refused to do.  I knew Clara trying to do more for herself was good for her, and I really needed it.  After that, there were many times she said she could not get up, and I would remind her that I could not help her and she would try a bit harder and be successful.  There were other times that she wasn’t feeling her best and she refused to try again.  At first I would end up helping her, then feeling frustrated and resentful because it would cause muscle spasms in my neck and back, often resulting in a migraine with vomiting.  

One day I was helping her in the car and somehow she sat on the ledge of the car frame instead of the seat.  I was in disbelief that she missed the seat.  There was just no way she could ever get up from sitting so low to the ground, and of course no one was home and I said a cuss word at her.  I have always worked hard not to use foul language, I thought the words many times, but always wanted to set a good example for my family and just didn’t say them.  Here I have my eighty-one year old mother-in-law sitting on the edge of the car saying she was going to fall out on the driveway, scared to death, and I pick this day to mutter my frustration by saying, “Oh SHIT!!  I can’t believe you missed the seat.”  Then I felt like a big bully.  I told her not to fall off the ledge that we would work it out together.  I had her wrap her arms around my neck and I wrapped my arms around her waist and on the count of three I picked her up.  I wanted to pick her up to the seat but she wanted to stand back up and then try sitting again.  So I got her standing up, but she is now so out of sorts, her legs were buckling under her.  With authority I said, “Clara, stand straight, strengthen your legs” and she did.  Our way of getting her into the car was to back her up until her calves felt the frame of the car, then she would sit on the seat, and I would swing her legs into the car.  It was a good system.  We worked together and got her in, by now I was drenched with perspiration and embarrassed that I cussed at Clara.  As I got in the car and turned the air conditioner on, I apologized to Clara for saying a bad word to her out of frustration and she sweetly said, “I didn’t even hear it.”  Her hearing was bad, but not that bad, those were the things she would say that would endear me to her.  Off we were to dialysis and we got laughing about something else.  After that day, she would try to grab her pants leg with her hand to help lift her own legs into the car, she was trying.

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I became friendly with the nurses and technicians, but it was not the same burden that keeping tabs on so many patients had become at the other center.  When I run into the staff at the mall or grocery store, we  stand and chat for some time.  Often they would express the respect they had for me for the care I gave to Clara.  I had never received any commendation from Clara’s other children for the care I gave their mother, so that meant a lot.  

Taking Clara to and from dialysis two times a week didn’t seem like a big deal anymore.  I still had to arrange my day around her, but it was better.  Since Clara was getting stronger, I would often make her lunch in the morning and put it in the refrigerator, so she could get up and get it out herself.  After dialysis, she always wanted a bowl of soup.  She loved the soup from a restaurant that was only about fifteen minutes from our house.  I would often drop her off, go pick up her soup order then go about my day until it was time to pick her back up.  Once she was home I would warm the soup up and make her nightly cup of hot tea.  Providing her meals was no longer the ordeal it was when I was carefully cooking each meal according to her dietary restrictions.  I would consider Wednesday my day off because after I went over in the morning to take care of her, I would not have to worry about her again until the evening.  By now Clara’s dialysis time was moved up to noon, so on Wednesday her one daughter would come and take her to breakfast, then to dialysis, and the other daughter would pick her up on her way home from work.  At first I would still have to be available when she got home to give her a light meal and her hot tea.  In time I asked her daughter to take care of that which she did, so until 11:00 p.m. when Clara was ready to go to bed, I was off duty. 

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Even though I can normally talk to my husband about anything, I was embarrassed to talk to him about this man.  I had already told him about the first encounter, and he correctly pointed out how foolish I was to think this man was calling me over for medical help.  So I figured he would really think I was being silly about the entire thing.  The following Monday morning, I drove over to my girlfriend’s house so I could walk with her and her husband for exercise.  We would walk very early before having to start my day with Clara.  As we were walking, I was relating how I was dreading going to dialysis that afternoon because of this man and I related my experience.  Her husband asked what my husband thought of it and I told him that I was too embarrassed to tell him and why.  He told me that this man sounded like a real threat and I really needed to tell Andy about it.  He also told me it was important for me to alert the staff at dialysis of my concern.  First my sister, now my girlfriend’s husband is telling me not to ignore my gut reaction.  It was hard to believe this man was a real problem but it was also hard to ignore that he could be.  Andy was already at work and I had to take Clara to dialysis but I promised I would tell Andy as soon as he got home from work.  After getting Clara set up in the treatment area, I asked to speak with the head nurse.  I told her my three experiences with this man and she said she knew exactly what I was talking about.  She told me he often makes her feel uncomfortable.  Then she said what worried her is that this man works at the Motor Vehicle Administration and she worried he would run her car tags and find out her home address.  Now this didn’t feel like my imagination running away anymore.  The head nurse said she could talk to him on my behalf and I told her I felt it was important for me to deal with it directly.  At this point, I felt intimidated when I walked into the dialysis center, and I wanted to get my control back.  I just wanted to alert her to my plans.

That night, I knew I had to keep my promise to tell Andy.  I asked him if he remembered the man that patted his chest and he laughed and said yes.  I told him about the next time he used his finger to call me over and he stopped laughing.  As I got to my third encounter, he was on the edge of his seat.  Rather than feeling like I was going to be blamed for creating this problem, Andy was ready to go to battle for me.  At this point I just told him what happened, not even my reaction to it and Andy said this guy sounded like a real problem and potential threat.  As I told him how scared I was all weekend, he couldn’t believe I didn’t tell him sooner.  He told me not to worry, that he would take care of the matter immediately.  I thanked him, but told him I felt it was essential for me to at least try to handle it first, because I felt this man took some control from me and replaced it with fear.  I needed to get my control back.  Andy reluctantly agreed that I could handle it first.  I wondered if any other caregiver found herself in this mess!

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After being at the new center for just a week, when Clara and I walked in, the wife of one of the patient’s was throwing a fit.  She was cursing like a sailor at the staff, angry that her husband’s treatment did not end on time.  I put my head down to mind my own business and was trying to hurry Clara back to the treatment area, but Clara would take these baby steps and it seemed like it was taking forever to reach the treatment area.  This woman kept asking me what I thought about the inconsiderate bunch here and I’m still trying to hurry Clara thinking I DON’T WANT TO GET INVOLVED.  I was even tugging on Clara’s arm a bit trying to hurry her, but I think Clara was intrigued by the commotion and was trying to figure out what was going on.  This woman walked over to get me to join her in complaining, I just said that we were new here and I was sorry she was having a bad day.  As we finally got in the treatment area, I told the nurse that we were in no way connected to the angry woman in the reception area.  I didn’t stop to think that they would know who this woman was since her husband was a patient; I was just so worried about getting off on the wrong foot with this new center.  Each time we would arrive for Clara’s treatment, this woman would be yelling and cursing about something.  Since there was no avoiding her, I decided to break my own rule and try to befriend her.  I found out that she worked at a nursing home.  She arranged her schedule to go to work after her husband’s dialysis, so she could pick him up and transport him home.  Her loud complaining was because her husband had not finished on schedule and it was making her late for work.  In time, it seemed like this woman, Miss Betty, would wait for us to arrive.  I would always try to calm her when she was agitated, and in time I learned a lot about Miss Betty.  It became clear she had a hard exterior, but was a woman full of pain and love to give on the inside.  She had a very difficult childhood, and there were many things about her adult life that wasn’t that great either.  Eventually, when we arrived, we never found her yelling, just sitting around talking with others in the reception area, and I would always have a quick visit with her after dropping Clara off.  We ended up forming a friendship that surpassed the dialysis center.  When her husband died, I visited her at the funeral home and found out from her children that she spoke warmly of me.  I was glad I broke my own rule with her.

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