My sisters and I were raised to be self sufficient. I mean, we were made of pioneer stock....could have changed the wheels on our covered wagon if we had to. No sissy women in this family! When first given the dementia diagnosis, a gut wrenching pain came over me. It was fear that I wouldn’t be able to do this caregiver thing. I knew what that meant...long drawn out years in the desert of illness. The pain only lasted for a short time, however. We had a desert to cross. Let’s get started!
After about the 8th year, it was getting harder and harder to get reenergized. I HATE BEING NEEDY! Perhaps asking for help would make me feel pitied or pathetic or weak or poor or lesser than or incapable or ..who knows what our silly minds think. I was not Proud Mary...but proud SUE. I was very reluctant to admit I needed help. Thank you very much, but I can do just fine keeping up with work, medical bills, home finances, the yard, wedding planning, paying for college, new grandchildren, support groups, EMOTIONS, hysterectomies, barking dogs, leaky roofs, overflowing toilets, cooking, cleaning, administering medications, oil changes, car inspections, ...and, oh yeah, a crying husband! I’m fine. I’m fine.
The simpler lifestyle in a small beach community made it easier, somewhat, in that Jerry could walk the dog and ride a bike without getting lost or hit by a car. But would he find a friend? Who wants to be friends with someone with dementia? I became his only friend. As he declined, I became drained of my emotional and mental energy, then my physical energy. There was no ZIP in this ZIPPER. There was no more oil in my lamp..no water in my well. I made the frantic search to find respite care through medically insured means. If I could just get one day...a couple of hours... To my frustration, insurance didn’t pay for much, if anything, and what it did pay for was not very good quality. I couldn’t do it. So, I decided I’d just continue being “invincible”. NOT! It didn’t take long for me to become fatigued, day after day, and thus, CRAZY....experiencing caregiver burnout. I was dying of thirst. Where was the water! As much has I hated it, I had to cry “agua! agua!”
I put the word out among church friends, art groups, everyone I could find...that I needed help. Help didn’t come all at once, but it slowly came in with perfect timing so I would be more accepting toward it. When a friend offered her husband, I took a deep breath, held my head up, then hung it low in humility. I accepted this cup of water. Their friendship has grown precious. Then, I found my first “paid” friend for Jerry. That too has become a wonderful relationship.
Personally, it gives me joy when I show compassion for someone. My compassion is not out of pity, it’s because I care. It makes me smile. Likewise, to not accept another’s kindness robs them of that same opportunity...to be a part of a team..to be of support..to offer a cup of water. I must admit, now, when help is offered, I am too pooped to resist. Truth be told, I say “BRING IT ON!” When this is all over....do I have a lot of "paying it forward" to do! I hope they’ll let me.