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Posts Tagged ‘caregiver support’


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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A new dialysis center opened just five minutes from our house.  Clara had made such remarkable progress, it was obvious the doctor’s initial estimate of her life expectancy was wrong, and we started making provisions to transfer her to the new location.  On one hand it was the greatest of compliments to be told by medical personnel that Clara was living much longer than they ever anticipated because of the care I provided for her.  On the other hand, some days that was a conflict of interest for me!!  Clara wasn’t thrilled about changing where she would receive her dialysis; she was used to going where she was.  I kindly pointed out to her that while she only had a twenty minute ride over, I still had another twenty minute ride to get back home, that did not include having to come back after her treatment was over to pick her up and drive back home again.  Clara said she did not want to change, but understood it would be selfish on her part not to.  I decided that it would also be good for me since I had become attached to so many patients at the old center, and since that required so much of my time; I was not going to get involved with anyone at the new dialysis center.  I was so excited the first time we went to the new center.  We left the house, I got Clara weighed and set up in her treatment chair and I was back home in less than 20 minutes.  With not knowing any of the other patients I didn’t feel the need to stop and visit with anyone.  Since it was a new center, they were not filled to capacity yet, so Clara’s chair was always ready when we arrived. 

There is an article in Energy Times entitled, LOVE’S CHALLENGE, Caring for an ill family member can be emotionally and physically wearying.

http://www.energytimes.com/pages/departments/1205/holistic1205

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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. 

http://www.energytimes.com/pages/departments/1205/holistic1205.html

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Dialysis opened a whole new can of worms.  When it was determined that Clara would begin dialysis, I privately asked her doctor how long she thought she would live on dialysis.  She explained with all of Clara’s health problems, the hope was she would live up to two years.  That was staggering to hear.  It also gave me renewed enthusiasm for caring for Clara.  This woman was down to her last two years of life, certainly I could tough it out and make her life as pleasant as possible.  I had already scouted around a few dialysis treatment centers and found one about twenty minutes away from our house where the staff was really nice.  Since she required treatment three times a week, which required three trips over, and three trips back.  We divided up her transportation between me, my husband and her two daughters.  In time, my husband’s work schedule did not allow him to take his shift and it fell back on me.  Eventually, her daughter that lives about a mile from us was only able to pick Clara up after treatment one time a week.  So on Monday’s and Friday’s, I would take her and bring her home.  On Wednesday, one of Clara’s daughter’s would take her, and the other one would bring her back home.  To be continued…..

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Medicare just launched a new feature on their website, called “Ask Medicare“. This section is specifically for caregivers.  This website includes Medicare basics, help on long-term care plans, options on at home or facility care, and resources for local support.  This information is very useful if your loved one currently has Medicare or may be eligible for Medicare. 

 I have a little over a year until my mom becomes eligible (she is only 58 and we have to the wait the 2 years from when her permanent disability went through).  I know that she will still need supplemental insurance to cover everything, but Medicare will help a lot.  Right now, her Cobra payments are over $600 a month.  Yes, you read correctly.  So, in addition to having to live off of Social Security Disability and Pension checks, a good 1/3 is taken out for insurance-  not to mention all the copays, prescriptions, etc.  Yikes is right!  That’s why I am working, working, working… and still hoping to win the lottery.  Hey- you never know.  I figure my luck is bound to change one of these days and why not have it be the day I picked the winning numbers for Powerball.  🙂

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My caregiver story


 PART TWO of MY STORY (Continued from Part One of My Story. )

Back to my story…so my mom was in the rehab hospital working on various kinds of therapy.  She had had a massive stroke on the left side of her brain, which left her right-side paralyzed along with 100% loss of her speech. I went to the hospital everyday, to spend time with her, sit in on her therapy sessions, and meet with various doctors and therapists about her progress.  Meanwhile, I was also running around crazy, trying to get legal documents in place, social security disability, her work pension, fighting her insurance to get the best care, and just about a million other things that needed to be taken care of.  While there was a war going on in Iraq; I felt like I was in my own war- at home. 

(more…)

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