A Caregivers Thoughts on the Quality of Life

Every day when Gladys gets up, I ask her “How are you today?”  Her response is always, “Thank God I’m still alive.”  Every time she says that, I wonder what it is that she’s thankful for.  (I know that’ sounds bad but it’s what I think).

Her Mental State

Gladys has lived a good life and a fairly long life.  She can engage you in reasonably good conversation.  If you didn’t know she has dementia, you would have a hard time discerning it.  Gladys has known me since I was born, literally!  She was the one who took my mother to the hospital.  However, she does not remember my name.  She knows her birth date but not today’s date.  If you ask her the year, she will say it’s 1999.  She doesn’t know where she lives but she knows that she’s not in Philadelphia anymore (we moved her to Georgia a year ago).  She knows that a black man is president, but she can’t remember that his name is Obama.

Recently she has started asking the same questions over and over again.  Sometimes she forgets that she ate; she forgets she just came out of the bathroom and turns around and goes right back again. I know these are all the usual progression of dementia, but I’m still puzzled by her reply, “Thank God I’m still alive.”

Gladys knows that something is wrong with her but she doesn’t know what’s wrong.  Her greatest fear is what people used to call “old and doty.”  When she does things that don’t make sense, she’ll cry and ask, “Am I losing my mind?”  I know that she is, but what am I suppose to say?

Her Physical Condition

Every day Gladys takes 13 different medications.  She has another that is in reserve for very severe pain only. She has extremely severe arthritis and is always in pain.  She has no cartilage in her joints.  Even though she takes glucosamine/chondroitin and calcium chews every day, they doesn’t seem to help.  I can hear her bones rubbing and knocking together.  I can see the pain on her face and sometimes she’s in so much pain that she just cries; and there’s nothing I can do about it.

She moves so slowly that I am constantly reminded of Tim Conway’s little old man on the Carol Burnett Show. I used to laugh so hard when his segment came on the show.  But I’m not laughing now.  Compared to Gladys, Tim Conway’s little old man was running a sprint.  In the mornings it takes me 2 1/2 hours to get her ready so we can take her to adult day care.

There are many other examples I can give but I think this is enough.  So if I go back to my original thoughts about the quality of life, I ask myself would I rather live that way, would I want a better quality of life or would I want to go home to be with the Lord.  I know there are millions of people living with a variety of diseases and conditions that have a poor quality of life.  I don’t know what the answer is.  I know what I feel now, but as life goes on my opinion may change.

Right now I am one person looking at another person whose mind  and body are slowly deteriorating.  I wonder if I was in the same condition, would I thank God that I’m still alive or ask Him to bring me on home?

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The Fraternity of Caregivers

Family caregivers form a fraternity that only we understand and appreciate.  Former and present caregivers are all a part of this fraternity.  We understand the time commitment and sacrifice.  We understand the effects of fatigue and sleepless nights. We know that Murphy’s Law is alive and well.  Those of us who care for adults with physical disabilities have thrown out our backs and used muscles we didn’t know we had.  And those of us who care for family members with dementia know the frustration that comes when they ask us the same question five times or tell us the same thing over and over again.  We also know how it feels when they no longer know our names or who we are.

Catching Up On the Simple Things

This past Saturday I had one goal:  to catch up on my laundry.  Sounds simple, right?  Nope!  Since Gladys started having incontinence issues at night, I spend a lot of time washing her sheets, mattress pads and night clothes.  As a consequence, the rest of the laundry keeps getting pushed aside and I end up with mounds of laundry that accumulates.  So what I end up doing is washing just what Fred and I need and putting the rest off.

Non-caregivers Just Don’t Understand

As a blogger, I try to participate in a few social networks so I put an update on my Facebook page that said I was spending Saturday, trying to catch up on laundry.  One of my Facebook friends, who has three stair-step children, decided to make light of my status. She pointed out that she washes 16 loads every week and wanted to know just how much laundry do I do.

Now, fraternity members know this really isn’t a big deal; we also know how easily we can get stressed out by little things and sometimes tend to over-react to simple things. But, since I stopped to think before I replied, my reply was fairly civil with a slight edge. Here’s the kicker, the comment came from a church member and I’m the pastor’s personal assistant. And cussing is unacceptable and frowned upon by the saints. It’s especially unacceptable on the Internet where comments never disappear.

Caregivers Get It

I put a similar update on Twitter.  One of my Twitter friends who is also a caregiver replied:  LOL, how exciting, that’s what I’m doing tomorrow.  She gets it!  It’s not glamorous or exciting.  It just is what it is.  Unless we want things to get completely out of control, we stop and get ourselves organized.  We do what we need to do to maintain control of our lives.

Rant Over

OK, now that I’ve vented I feel better.  Y’all have a good day.  Want to vent about something too – fill up the comments.  Bye

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This Old Lady Is Wearing Me Out!

Just thought I’d have a little fun with this picture.  It is not me, it’s my daughter, Anita.  She came by yesterday to give me a break from 3:30 until 8:30.  I was able to watch Oprah, eat dinner and take a nap without responding to NICHOLE!  I appreciate the break, every little bit helps keep me sane and keeps me from becoming resentful.  Anita also prepared Gladys’ dinner, took it to her and got her ready for bed.  Oh, and she fed the cat – not this cat, Gladys’ cat.

Ahhh,  my own small moments of leisure.  I’ve learned to appreciate the small things in life.  A few hours of time when I can do some things for myself, or do nothing at all.  Priceless!

Gladys didn’t really wear Anita out.  Anita’s eyes were itching and she put on my gel mask to help relieve the itching.  But, I had to capture this photo because it is so indicative of how I often feel – worn out.

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