Caregiving from a Caregiver's Perspective - Part Two b

Part 2b – Giving Care 24/7

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: one not medically adept and two spouse has no problem with anyone providing care, and can afford it.   So, the suggestions in these situations would be to:

1. Hire someone to come in a few days a week to perform routine care.
2. Enlist family members to sit with them
3. Take some time off, go to a movie or out to eat.
4. Get a massage or manicure, get your hair done.
5. Go to church or join a club.
6. Walk around your neighborhood.
7. Find a hobby.
8. Join a support group.

Its 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.