Monday, June 13, 2011

Caregiving from a Caregivers Perspective - Part Two

Part Two - Giving Care 24/7


My last article on care giving was about listening. 

Who listens to the caregiver? 

Where do they go for support, advice, to vent? 

There are many different types of caregivers.  Probably the first introduction you receive in care giving is connected with a grandparent.  You see your parent take care of their aging parents, either by prolong visits, hospital stays with them, or even having them move in with you.  As you get older, you begin your family.  You begin to care for your spouse.  You take care of them in times of sickness, and wellness.  Cooking, cleaning, even the occasional back or foot rub are all parts of giving care. 

As your family expands, and a baby arrives, the role of the caregiver is more advanced, complicated.  You become responsible for another human life.  In the beginning taking care of a child is a demanding 24/7 activity.  You have to feed, clean, nurture a newborn.  However, taking care of a newborn is not a continuous event.  The newborn grows and becomes independent, turns into a teenager and drives you crazy.  Even though you continue to feed, clean and nurture them until they go to college, and beyond.  They are able to function independently. 

The next form of care giving is usually your parent.  This could be limited, or complicated depending on their health issues.  Then there is the area that I am familiar with, the care of a spouse. 

I married my husband 16 years ago.  The first few months were wonderful; however 5 months after we married he was injured in a work related incident which ruptured several discs in his spine which eventually lead to paralysis from his chest down.  He was no longer able to work, and was home alone while I worked.  Since I worked nights, it was not a problem, however when my work schedule changed to days, it was becoming unsafe to leave him.  He would have falls, injure his legs, and get burns from hot liquid spills.  My husband was 37 years old at the time and very independent. 

So, I had a decision to make.  I could continue working, or stay home and take care of my husband.  Even though it meant the loss of my income, the choice was simple.  We were aware that his condition would deteriorate; surgery was not an option his injury was so severe that it couldn't be repaired.  As nurse, I knew how to care of his medical needs, and as a wife I wanted to take care of him.  He was a very private person, and didn't want strangers seeing him in the buff.  The thought made him anxious, so I had no problem alleviating his fears and providing all of his care.  Thus began my 24/7 life of care giving.   In the beginning it was not difficult.  He was able to move about in his wheelchair, and able to drive his van using hand controls. 

Living and a small tourist town, there were not many handicap accessible places we could go, but we made the best of it.  The main thing we missed was contact with the outside world.  Neither of us grew up in this town, so the friends we had were either work related, or church related.  Because of the legal matters surrounding his injury, his co-workers were not allowed to talk to him anymore, and I had lost contact with fellow co-workers due to hospital lay-offs and downsizing.   We were no longer able to go to church because it was also inaccessible.  Thus began our life of isolation.

Having a family member who is handicapped or disabled is a very isolating experience.  Both my husband and I were both friendly, outgoing people, however when you are prevented from going into a friend's, neighbor's or even family's home, you can't visit.  When you can't get into restaurants, or stores or theaters, you stop going out.  Some of life's ordinary things people take for granted are more noticeable when you no longer have them.  When you lose sight, become deaf, or become paralyzed it is a very difficult thing to deal with.  Friends abandon you, family sometimes ignore you, not that they are to blame.  People may get uncomfortable, not know what to talk about, and have their own activities they are involved with.

Eleven years after his injury, my husband became bedridden.  This was traumatic for both of us.  Our bedroom had no windows, so he was unable to look outside, get fresh air, and watch it rain or see the seasons change.  He was not even aware if it was day or night, and had to be constantly oriented to day and time.  Once my husband called my father at 2:30 am to say, " Hi! whatcha doin?"  My dad just said "well, I was sleeping!"  The next day he threatens to come over and knock a hole in the wall so he could see outside!

When he became bedridden his needs changed drastically.  It was like taking care of a newborn, only he was 49 years old, and weighed a lot more!  He had to be turned every 2 hours to prevent decubitus ulcers from forming. His medications were given 4 times a day, he had to have his meals and liquids provided several times a day, and had to have baths and bed changes frequently, especially if a drink was spilled.  His urine bag needed routine emptying, and bowel routines to perform.  Since we shared a bed when he was turned on his left side (every 2 hours), I had to get up so his catheter could drain.  I could no longer leave the house for longer than 2 hours at a time.  I couldn't go out for fun activities for feelings of guilt.   I could not enjoy myself knowing that my husband was stuck in a bed, and he would like to go out and have fun.  I did leave to get groceries and medications, but made sure he had the phone within reach in case a problem came up.  I would try to run these errands while he was asleep to limit any problems. 

Now...this is the part where I'm supposed to tell you where to get help.  Well...Knowing and telling you what to do is much easier than actually doing it.  Each situation is different.  As I said, I'm a nurse, so I knew how to take care of my husband.  He was a private person, and didn't want anyone else to see him.  I was also his wife, so I loved him and wanted to do all I could do to take care of him and make him comfortable.  I had the cards stacked against me.  Most families in this situation are 1.  Not medically adept and 2. Spouse has no problem with anyone providing care, and can afford it.   So, the suggestions in these situations would be to:
  • Hire someone to come in a few days a week to perform routine care;
  • Enlist family members to sit with them;
  • Take some time off, go to a movie or out to eat;
  • Get a massage or manicure, get your hair done;
  • Go to church or join a club;
  • Walk around your neighborhood;
  • Find a hobby; and
  • Join a support group.

It’s always easy to tell someone what to do.  For me, these suggestions were useless.  Most of the time I was either in the same room or adjacent room at all times.  Not only did I take care of his physical needs, but emotional needs as well.  My husband was isolated from everything and everyone, in a room with no windows!  I was his main source of communication.  I would constantly encourage him to call family members just to chat, which he enjoyed, but I could sense conversations were strained.  After months and years of being trapped in a bed, there wasn't much for him to talk about.  As for my escape...well I would go sit on the porch, leaving the door open so I could hear him. I would spend lots of time online playing games and talking with my online friends.  I would sleep when I could, and take care of my husband the best that I could.

Each situation is different.  You have to find out what works for you and your family member.  The main goal is to provide optimum health for everyone concerned.

Part three will be published tomorrow.

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