Caregiving for Mom or Dad

By: Helen

It is strange how things get turned around when our parents get ill, especially with the diagnosis of breast cancer.  Yes, Dad’s can get breast cancer too. 

There is a subtype of cancer that is called triple negative (TNBC).  TNBC is a very aggressive cancer and can affect all ages and genders.  Steve has posted some valuable information about the hereditary, genetics and being tested for the genes that causes TNBC and how important this is.  Check his document out on this site!

As the oldest in a family of three children, I was the one who was the caregiver to my mom for many years. Chronic disease is ongoing and is very tiring for the patient and the ones who care for them, but we always hope for a cure no matter what!  Mom had COPD for many years and therefore I had to keep a close eye on her for her care that she had her medications, enough groceries in the house, if there was any housecleaning that she needed to have done, appointments to physicians, multiple hospital admissions and basically that all her needs were met before I could take care of my own life and children.

I guess you get the picture of what we must do for each other whether they are a parent or a friend.  We are each called to help the other out and do whatever we can without compromising your own health and that is what I want to speak to you about today.

As a single parent, working in the health care field, with two children, it was my responsibility to ensure that my mom had what she needed to have a good life and that is what I did right to the end of her life.  Was it difficult?  Yes, to say the least it was.  Was it worth it?  Yes, absolutely!  There is nothing like a clear mind when you get to finally put your head down on the pillow and say, I did my best and the rest doesn’t matter.  It is an awesome feeling! Especially when it is your mom or dad who you have loved all your life and know that they have loved you to the best of their ability and now you have no regrets! 

My parents separated when I was young so I was used to doing for each one separately.  It is difficult but doable. Planning is everything and even then, the best laid plans of mice and men….but if you have a plan, it works better.  I would say I spent 37 years of my life ensuring my mom had what she needed.  I worked two jobs to be able to sustain my two children and a home.  I was flexible with my time and usually took the children with me so they became very close to their nan and as they grew up they would help out when they were asked. 

Environment is very important to where your parents live and what resources they have around them, like neighbors, how far they are away from you in distance, I was 20 miles from mom so in twenty minutes, I would be at her door.  Fire Department services were close and due to a fall she had, they had to be called.  Thank goodness they were there but when our parents age they loose some of their balance and the things we take for granted become major issues to them.  She broke two of her toes and had a bump on her head but was very lucky the first responders arrived within 10 minutes. 

When mom was diagnosed with cancer in February 2007, it was a very difficult day! My sister met us at the Cancer Center and we both sat in disbelief when the medical oncologist told her there was nothing more they could do for her!  Well my sister’s son was in Afghanistan and he was due back home in August of that year so I spoke privately to the doctor in the other room and told him about mom’s grandson being away and asked if she would still be here when he came home and his answer was “very doubtful.”  What a SHOCK!  It was important to know in case mom had things she needed to do for herself, but WOW, I was not expecting that answer at all!  Mom had not been healthy most of her life, but now this was a time limit put on her life!

All mom said, as we left the office after getting ourselves together for 15 or 20 minutes, was “well I guess we are all washed up.”… that was a saying we had when things were over, done, finished.  Ohhhh.. I told her “we will never be washed up.”  I was supposed to return to work, but I called and told them it was not good news and I had to spend time with mom and could not leave her alone with getting this news.  Work was not very supportive, as they were concerned about getting the work done and I don’t think they ever dealt with life and death issues and so they didn’t know how to deal with it!  I went home later that night and closed up my home, packed and moved into mom’s one-bedroom apartment with her. There I stayed until she passed.

Work is our livelihood and if our employers do not get that we are the caregivers to our parents, we are in trouble in the beginning of the hardest part of our lives….

In Canada, we are fortunate to have Palliative Care (PC) in the home.  With that we have a nurse to draw up the IV meds that need to be given every four hours or more.  The PC physicians come to the home to check the needs of the patient, such as proper bed that the patient can be cared for in an ergonomic situation.  Most of the time we need a hospital bed so that it can be raise and lowered as needed.  They ensure there are enough supports in place to keep the person in their home. 

If the patient cannot go the washroom, then a portable toilet would be required.  My mom suffered from COPD so she would need her areosole machine with prescription nebules added three times a day.  Regular medications for diabetes, blood pressure, anxiety, etc. had to be set out in a weekly docette.  If  bladder or bowel control was an issue, maybe a catheter and/or adult sized diaper had to be used.  People who had limited movement in the bed needed to be moved from side to side and on their back every half hour to eliminate bed sores.  I must say neither parent had anything like that!  Bathing every morning and evening can be a chore, but needs to be done to keep them feeling fresh.  Clean sheets and pyjamas each day sometimes twice a day, according to how much they sweat. 

Everything has to be logged into a book to let each person know how each item that was done, the time and who did it, so that if there were others that helped out, they knew exactly where to pick up for that timeframe. 

I found that the medications that were prescribed for my mom were pretty heavy for her, as she was not the type to take a lot of medication and her behavior changed and she became much like a child in her actions.  Some things were funny and we both laughed, others like at 3 am when she wanted to sit up and chat, (she didn’t like the night time and patients get their time mixed up as they near their destination) when I had to be at work in a few hours.  There were many nights I just sat in a lawn chair next to her bed, so that when she stirred she would know I was right there rather than be on the chesterfield in the front room.  Had I known (understood) that this journey would be her last one, I would have taken time from work to care for her, but when you are right in a situation, you just go with the flow and do what you can.  Respite for one hour on the weekends was also given to us, so that if I needed to do things for myself, I had that time.  A well needed break…

As she progressed I needed to have someone with her on a daily basis so we found daily sitters who did not give medications so I would come home to give her meds then return to work.  If my daughter was in the area, she would do this for me.  My sister gave a few hours on Friday nights when I worked in another clinic, but she would not stay without her husband being there.  Each member of the family has their own gifts and to stay with mom was not one of her’s, so we just had to work around this.  My brother would come to give me an hour during the week.  Everything that was given was readily taken.  Meals were hard because she did not have good swallowing skills now, so soft foods were prepared.  Jello, pudding, ice chips to keep her mouth moist.  We used a lot of  Boost and Ensure which tasted good too!  Mom loved toast and tea, so we had a lot of tea parties! 

This process went on 24 x 7 days a week for three months until May 20th, Mother’s Day, when a room came available in our nearby hospital.  I called my sister, brother and daughter (she was like a daughter to mom) and told them the room is available, “I think mom is ready to go into hospital”, we all agreed.  By 2pm mom and I were on what we thought was the last journey by ambulance to a hospital that we new very well.   By 3 pm she was settled into a lovely room with peach walls, it wasn’t long before we had it looking like home for her.  The nurses were fabulous with her!  The physicians did their investigating and at one point in time, thought she would be a good candidate for a nursing home.  Oh my, that was one of my mother’s wishes “NO NURSING HOME”!  More decisions to make…… 

Stay tuned for more…..

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