Personal Care Vs. Care Giving

ER - URVH - August 14,2018

The past few weeks have been busy. We host an annual arts festival on our property and while I thought we should forgo it this year, my husband thought we should proceed. He always enjoys the festival, fun and artisans who grace our place. He knew this year he would probably not be able to participate much, if at all. He did encourage me to continue, and I had mixed feelings. On the one hand, it is a lot of work and I would be on my own do it. On the other hand it is a great time, wonderful positive energy and if the weather cooperates, satisfied artisans and hundreds of people attending.

We decided to proceed. I am grateful and regretful. Mixed feelings are normal. I am happy that it went off without much of a hitch, we had a fabulous turn out of people and it was fun for me, for the first time to sit out front as a vendor. I am regretful because I think it was really hard on Trip/Len. He had a hard time resting due to the flurry of activity for days before and on the day of. I was not able to be as attentive as I normally would and unable to really watch and guide his intake of food/drink.

Brother Larry building the "Rustic Outhouse"

His brother/sister-in-law arrived a few days before and they were here to help, and help they did! They absolutely supported me in getting things done and offered assistance, love and help with Len. The festival occurred on a weekend between chemo treatments and all seemed to go well. We were overwhelmed by the love and friendship offered to us by the vendors/artisans/friends we have made. In some ways it lifted my soul and filled my heart, in other ways I felt I let Len down. These are my feelings. They are how I am expressing myself and others may disagree or condemn me, but what I feel is that I failed in some way.

Post festival and the satisfactory high that always accompanies a successful event, was the realization that he was floundering and falling. His symptoms were poor, he wasn't resting, his output with his ostomy was negative, he was having trouble getting food in and he was dehydrated. I know he was happy we held the festival but my perspective was I had not done my job well. I was missing the signs and not putting my attention where it belonged. His bloodwork came back poorly and due to his levels of toxicity he was unable to take his treatment this week. He needs time to heal before proceeding - this is upsetting for him but it is not really unexpected, I think it happens to most people at some point during the process.

Trip 'n Daisy Hippie Art - Golden Unicorn Arts Festival

I know that other caregivers reading this understand what I mean. You KNOW in your head that sometimes you have to do things that are just for YOU and that is some of how we cope with caring for an ill loved one. Having said that, you ALSO realize the guilt that accompanies that when you see your loved one is failing. It is a dilemma that we all face. You want to respect their wishes and just be about YOU for a few minutes but then you see how that has affected your loved one, or how they tried to hide how they were feeling to allow you space and you just crumble inside.

I am so appreciative of Len's family being here, they have helped physically, mentally and even gave me a break from some of the driving that I have to do. THANK YOU SO MUCH! I have one more commitment to complete - fortunately Larry & Lylia will be here to help with Len and then I think I have to stop everything until he gets better... that is hard to do but important and I am struggling with this decision but know it is right. 

We spent yesterday in the ER at our local hospital - because he was dehydrated, continued diarrhea which is serious when you are undergoing chemo and have an ostomy as well as we discovered he was suffering from an infection that was missed. On top of this he has lost more weight, 8 pounds in about 10 days. He isn't sleeping well and it is hard to take sleep aids when you are concerned about exploding pouches of poop. (Those of you with ostomies will completely understand that!) 

We now reevaluate, what next? How does he go on? He doesn't want to. The emotions and exhaustion are wearing him down and how do I as a caregiver keep him built up? What do I do or say that will fix it? I liken it somewhat to caring for a toddler - not in a dementia type of way - but in the way that when you have a toddler they spend the day going through a range of emotional reactions, they want something to eat but then don't touch it, they need a nap but won't take it and they poop a lot! They also need constant love and reassurance.

I know he will get through this, he has to. I know right now he doesn't care if he doesn't and that is so hard to cope with. My tears are so close to the surface. I watch him in pain or discomfort and I can't take it away. So what do I do? I wallow for a bit, I cry a little and then I "put on my big girl panties and deal with it!" 

Peace, Daisy Loves Trip