Friday, February 25, 2011

Misplaced guilt....

It's something all caregivers deal with. We're a guilty lot.

"I'm not doing enough."

"I'm not doing it right."

"I should have...."

This week, I took my youngest daughter to see my sister and niece at their home. Sweet niece's birthday was earlier this month and I had a gift for her. It was an hour and a half drive both ways. And, I had a plan for care of my hubby while I was away.

Dear Younger Son had just worked a 24 hour shift and would be home that day, sleeping. Sometimes he sleeps for a LONG time, but usually, just about four hours and then he's up the rest of the day. We all discussed it. He would be responsible for his dad that day, so our youngest daughter could go with me. And, our oldest daughter was working 15 minutes away. Her job is very flexible and she can leave for a bit, if she needs to.

I prepared everything, the house was clean, dear hubby was clean, things were done, I had made muffins for breakfast, dinner was planned, plenty of food in the pantry for lunch and snacks. I got hubby dressed that morning, face washed, all his morning routine done. Gave him his coffee, made him a glass of water, offered him food, set up his iPad, got him the remote to the t.v., sat his cell phone beside him, and kissed him goodbye.

We had agreed, if he needed anything he should call our son.....he was sleeping just down the hall, but didn't mind getting up if he was needed.

I left and called to check on my hubby about 3 hours into my visit. He was fine, resting a bit, we'd talk later.

My sister, daughter, niece and I had a good time. We went to eat lunch at Chick-fil-a, opened presents, visited, laughed and watched my niece play outside for a bit. Before I left, I sent my hubby a text to let him know I would be home in a bit.

I was gone for 7 1/2 hours.

When I walked in the door and went back to our bedroom, and there sat hubby, tired and looking lonely, but glad to see me. My son was still asleep. Hubby was out of water. I asked my husband if he had eaten anything. He looked exhausted.

Come to find out, our daughter ran home for a bit and hubby asked her to move his legs, get him some water and give him a muffin. All day he had laid in bed, no water except the original glass, nothing to eat, no help so he could move his legs, no one to talk to, etc.

Dear hubby, hugged me and told me he missed me while I was gone. He told me that he doesn't do well when I'm not here. He said he needed me and longed to hear my voice.

And, I felt guilty.

"I knew I shouldn't have left."

"Why did I pick this day?"

"Poor hubby, it's my fault he was hungry and thirsty."

"I should have been home, so he wouldn't be lonely."

I talked to myself and gave myself a lecture as I helped adjust him in bed. I berated myself, as I ran to the kitchen and made him a snack. I was frustrated with myself as I got him a glass of water. And, I told myself I wouldn't ever do this again.

I ran through the house, getting the things my hubby needed to be comfortable, I waited on him hand and foot, made him a delicious dinner, offered to get him this and that, rubbed his feet, etc. I was responding out of guilt.

Later that evening, as I was busy putting things away, straightening up after my mad dash home, it hit me. I was dealing with misplaced guilt.

I began to realize that I had made plans, I had provided, I had left him in good care. He had everything he needed for a few hours, and when he needed something, he had a cell phone. He could have called our son, and woken him up. He could have. Our son had agreed that he didn't mind waking up to help his dad. Our daughter was working 15 minutes away and has a very flexible schedule. He could have called her.

He is an adult. He is capable of making decisions. He needs full time supervision, in case of emergency, but he is a capable person without cognitive issues.

He thought through his choices and decided NOT to call our son for help. He made the choice. He had options and he chose.

I've struggled with misplaced guilt most of my life. I have always assumed that everything was my job. It's my responsibility to make sure that everyone is happy and taken care of. If I don't do it, it won't get done and people will not be happy and it will be my fault. Dear hubby knows this about me. He knows that I've been working through that and we've had countless discussions about it.

And, the next morning, we talked as I got him ready for the day. We were talking about how things went. And, I shared with him my misplaced guilt response.

We talked it out and he told me in no uncertain terms that he was well aware of the fact that he could call our son. He said he thought about it and realized he could wait. He was glad when our daughter came home and helped him out a bit, got him some more water and a muffin, but he said it was his choice that he didn't eat that morning before I left. I had offered. There were things he could have done differently and he admitted that next time, he would call our son. It was foolish not to.

I'm learning where my choices end and where others begin. I'm fortunate in that my hubby has the mental capability to make decisions. If he chooses something different than I would have chosen, I can't take responsibility for that. I can't feel guilty for something that is not my responsibility.

I wish Dear Hubby's day had gone differently. I wish he had made better choices, but he didn't. And, he realizes now what he should have done. Dear Son told him that evening, you should have called me and got me up. No big deal.

I'm still learning to work through misplaced guilt. How about you?

Thursday, February 17, 2011


Sometimes I forget things. I forget where I placed my cell phone. Or my van keys. Sometimes I loose important papers and go on a mad hunt for them. I've forgotten my friend's birthdays. I've forgotten to make phone calls.

I think the thing that brings me the most sadness is this: I've forgotten life before MS.

I've forgotten what my sweet husband was like: strong, vibrant, healthy, and a hard worker.

I've forgotten what I was like before MS.

I've forgotten how families operate, the activities you participate in, going to church, visiting family, etc.

I've forgotten what it's like to have a door opened for you. A glass of tea brought to you by your sweetie, or what it's like walking through Home Depot, hand in hand.

I've forgotten what it is to look ahead to the future with excitement and anticipation of wonderful things.

I've forgotten who I was before......

Saturday, February 12, 2011

Still here

It's been a while since I posted here, I know. And, I've asked myself why.

Perhaps I'm just too busy? No, not really. I have time to do what I need to do and then spare time to do some of the things I want.

Maybe I have nothing to say? No, that's not it either. With caregiving, there is always something to say.

I think that maybe it's that I feel that here during the midst of my caregiving experience, often I have to "work myself up" to post something upbeat and encouraging. Reading over my past posts, I know that they aren't always the most encouraging, but I'm thinking maybe it's better to focus on the good.

And, so maybe that's why I haven't posted in a while.

There are good things that have happened over the years, as I've walked this caregiving journey and I am grateful. I really am.

But this is rough road. It is a road filled with self doubt, fear, sadness, loss, misunderstandings, dread, hospital runs, stress, family issues, financial pressures, etc. It's all there.

And, I struggle with the balance between being honest and being encouraging. If I speak honestly everyday, I think I would find that there is a lot of pain on this journey and maybe that's just too much to face in written word, in black and white.

There are snatches and moments of joy, but they are soon replaced by loneliness, sadness and hurt. As caregivers, we try to make the best of life and enjoy what we are given. Making lemonade out of lemons. But some days we realize that we are short on sugar and our lemonade is too tart for our liking.

So maybe today, I will write another list of gratitudes. Maybe today, I'll concentrate on the good. Maybe today, I'll spend time thanking the Lord for what I do have, instead of thinking about what I lack.

And, maybe in the process of doing that He will change my heart. Maybe He will change my outlook. And, maybe I'll find myself with a tiny bit of joy to cling to.