My Caregiving Story to Date

Larry

My Caregiving Story to Date

Larry
blog(Editor's Note: We welcome a new blogger today, Larry (@kc9hdp), who cares for his mom and a family friend.)

This is my first blog post and I am going to take the opportunity to introduce myself and give a little history of how I came to where I am at now.

My name is Larry (age 41) and I care for my mother (age 65) and part time for a family friend (male, age 50).

Previously I cared for my grandmother with the help of my mother for about 2 1/2 years before she passed away in 2002 at the age of 75 from Calciphylaxis complicated by dialysis due to renal failure from complications of diabetes. She was also in the last year of her life starting to quickly show signs of dementia. During this time I was working part time days and my mother was working full time nights.

Then in June 2005 my mother herniated her L4&5 disk (at work) and had surgery on that. I cared for her from the time of the injury till the surgery. Stayed with her at the hospital all day during the time she was in the hospital. I then cared for her from discharge through her strength hardening program and return to work in January 2006.

I again started caring for my mother in August 2010 when she had a heart attack (her second, the first was in 1998 and two stints were placed at that time) and quadruple bypass surgery. She started cardiac rehab but was not showing any strengthening and insurance would not pay for anymore rehab. She was forced to take early retirement in December of 2010 as she could no longer function in her job as a bakery worker. During this time I was working full time and was fortunate to have a family friend to help take care of her when I was at work. By March of 2011 she was able to stay by herself as long as I had a lunch prepared for her that she could microwave. I still had to prepare her medications for her and make the meals. She is diabetic and has been since 1998. She started insulin in 2009 and used the pen till her loss of insurance due to not working. She did not qualify for Medicare and her disability claim was denied and appeals were very slow so at that time the pen was too expensive so I had to draw her insulin for her as she could not read the needle.

Then in August of 2011 she was hospitalized after having stroke-like symptoms; she was starting to have reactions to some of her medications building up in her system because she was in stage 4 renal failure. At this time her driving privileges were take away by the state on the recommendation of the doctor as her reflexes are too slow but she has not driven since her heart attack in 2010. Her medications were changed and the social worker was able to get many of her medications on programs from the drug companies. Then in December 16 through 20, 2011 she was hospitalized again do to a reaction to one of the medications which they put her on two weeks prior to try to help save her kidneys. Then in January 2 through 8, 2012 she was hospitalized for a drug resistant staff infection in her elbow believed to come from the IV she had in that hand when she was in the hospital in December.

Then, between January 21 and 24, 2012, she was admitted to the hospital again due to drug interactions and her decreasing kidney function. This all left her very weak and unable to do much for herself. The friend that helped in 2010 was no longer able to help because of health problems and had moved to assisted living. Being the only child of an only child I do not have much family. On my grandmother's side there are some cousins in NJ. There is one aunt on my father’s side who is local but in no condition to help as she has health issues herself. My father is unavailable as he has cut himself off from the rest of the family.

In February 29, 2012, I lost my primary job because of the amount of time I had to take off for caring for my mother. The company I was working for was a small company so I did not qualify for Family and Medical Leave Act benefits.

On March 8, 2013, she went in for day surgery to have an AV fistula placed in preparation for dialysis.

Between August 6 and 10, 2012, through a Bridges to Healthcare grant, I attended the first Personal Care Worker program at our local technical collage. An out-of-town friend came to stay with my mother during this time to help me out.

On August 13, 2012, she started dialysis three days per week. This then qualified her for Medicare. The social worker also gave us paperwork for the hospital foundation’s charity care program and the hospital wrote off all previous bills. In December of 2012, she also got Medicaid to go along with MA. Between January 9 and 16, 2013, she was again hospitalized and had a stint placed. She was just getting back to moving around good and starting to feel better when in May 10, 2013, she broke her fifth metatarsal. The wind blew the car door closed on her foot when she was trying to get out of the car without waiting for me to come around and help her. This put her in a boot and back in a wheel chair until August 6, 2013, when she was able to take the boot off. We are still working on building her strength back up.

On May 14, 2013, she was screened by the University hospital about two hours from us for a kidney transplant and we are working through all the test and screenings needed for that.

We are having a major care meeting Friday to set up a charting system need for her so that I can be paid for taking care of her. I have been keeping records but am told that it is logging I am doing and not charting. I would like to thank Denise and Kathy who where in the chat Wednesday afternoon and gave me some good ideas for the care meeting on Friday and encouragement!

I started taking care of our family friend who has lower limb lymphedema and is bariatric in June 2011 when the company that was providing his services quit with only a one-day notice. He was not sitting up in his lift chair that had broken and was taken out to be fixed and required parts to be ordered. For the first about a month I provided his services every day (three hours per day, seven days per week) even though I was working full time. With the help of his social worker it was determined at the time the agency quit that he was going to do self-directed care and would need to hire another care provider besides myself.

In July of 2011, another caregiver was hired for weekdays and I would do weekends because I was working full time Monday through Friday and we would back each other up as needed. This worked well until the other caregiver asked for a week off for the funeral of a relative out of town and after that week for the next week. She kept making excuses for not coming back to town. The day she was supposed to be back, after having two weeks off, she called 15 minutes before she was to be there and said she quit. This was mid February of 2013.

So I was back to seven days a week with him until we were able to find a replacement for her in late April 2013. I went back to mainly weekends but have had to pick up holidays as an agency was brought in for her replacement but they do not do holidays. My friend did not want to lose me on weekends because we have many of the same interests and my mother, him and I try to do fun activities together on the weekends. Many of the activities get them their exercise and is also an enjoyable activity for me. I have been paid for care time for my friend since June 2011.

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Maria

Bless you my friend! I took care of my Grandfather for the last 4 years-of his life of which he was on dialysis. He still live in his own house but I was the one who \"helped\" him out. Two months before he passed away he suffered a brain bleed and had surgery to relieve the pressure on his brain. He went to 4 rehab and had three weeks of rehab. After the three weeks he developed MRSA and Staph. After being in the hospital for 2 weeks he decided to go off dialysis and passed away days later.\r\nYou are a AWESOME person for doing all that you do!\r\nMaria

ejourneys

Hi, Larry -- Welcome to Caregiving.com, and bless you for everything that you've done and are doing. I am an only child also and the last of my line -- I understand the challenges in trying to get a support network in place. That's one of many reasons I love this site, which is wise, nurturing, and open 24/7. Thank you for being there, and for being here as well.

Larry

I will try to post as time and events permit.

EllysGdaughter

Hi Larry, I am so glad you found the time to share with us. You are such a busy caregiver! You will find you can share openly and honestly here with us without any judgements. Awesome Hubby and I live with my Grandmother in her house. We care for the house, yard and watch over her to keep her safe. She is a very private person and \"can take care of herself!\" I too have a parent who has left the family but I have lots of support with my sisters and my uncle. I hope to hear more from you!

Thedogmama

Hi Larry. Welcome to our world. It is full of wonderful people who understand, listen and care. It is a great way to share the ups and downs of your days. I take care of my mom too. Your mom and your friend are lucky to have you. Keep up the good work.

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