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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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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.

www.createspace.com/3469034

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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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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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tracksAfter my mom had a stroke, I spent months in crisis mode, doing everything humanly (and sometimes inhumanly) possible to help her recover.  Now, more than a year later, with the dust settled, she is gaining independence and I am gaining some of my life back.  As I was finding a new life outside of only caregiving- work, friends, a relationship; unbenost to me, I began to hope… My mom had made some recovery- both physically and mentally.  From where she had begun, she had gained quiet a bit of independence.  I never was naive enough to think that things would go back to the way they were before the stroke, but I unconsciously had hope that with the recovery she had made, maybe just maybe I would have my mom back.  And somewhere along they way, that hope had turned into expectation.  My expectation that at any moment now, she would just snap out of it, and become my feisty mother that would call the shots and tell me what to do. (more…)

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Caregiver Stress


Caregiver Stress is something we all have.  And unfortunately it is here to stay for as long as we are caregivers.  I always hear “You have to do something for yourself or take time for yourself, etc.”.  I typically say “I know”  and sigh.  I know I should be making myself more of a priority- but easier said than done.  It’s hard to find the time, especially now that I am both working and caregiving.  But the truth is, as much as I don’t like to hear it, it is important- no it is a necessity- to make time for yourself if you want to avoid a total burnout.  I have to admit, I am not the expert at doing this myself.  Sometimes I literally have to force myself to ignore all the things that need to be done and concentrate on doing something nice for myself.  Recently, my best friend has resorted to sending me text messages acting as ” my conscious” telling me to go get a pedicure or buy myself flowers.  Luckily for me, I have a best friend who would do that; unluckily for me I actually need that push in order to do it.  The luxury of having freedom and a “me-centric” lifestyle are long gone.  But that doesn’t mean that I shouldn’t have or feel guilty for having as much as my own life that I can get.  Albeit, I don’t exactly have a lot of time for a “life” but when I do- those moments are that much sweeter because I don’t take them for granted anymore.  (more…)

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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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