My life as a caregiver

I am sitting in my chair this overcast Thursday morning, feeling the humidity begin to build and watching the sky start to clear. It's going to be a hot and humid day! Perfect for ice cream! What am I going to do? I have lots on my list but need to remain focused.

Every day there is a reason to smile

Today is Thursday "week one" which means it is the day after Len's 5th session of chemotherapy. Every other Wednesday we go to the hospital, he gets set up, on meds, IV, etc, then begins his chemo session. While he is being treated I run back to town to do as many errands as I can, grab groceries, etc. He is at the hospital from about 9AM to 1PM - then hooked onto a "baby bottle" filled with chemo drugs that are slowly absorbed into his body over the next 40-45 hours or so. Usually by midday Friday   we go back to the hospital to have the chemo removed, his PICC line redressed and head home again.

Initially we thought the chemo days would be the worst, but in fact, they are his best days. Between the chemo drugs, the steroids and the cocktails of prescription concoctions going through him, he is most alert, bright, chatty and motivated for those 2-3 days. He tends not to sleep as much during this time though. I joke with him that I have to "crack the whip" since he is only good about 6 days a month - anything he wants to get done, gets done those days. I am JOKING! (I don't crack the whip but I do nag!) We supplement his regime with CBD oil and THC concentrate to help him heal, rest, nausea, etc. The combination seems to help, I had reduced his CBD oil for a couple of days since we were getting low, but he noticed the difference, so back on it!

This week has been a long one. As a caregiver, I was a bit worn out. As we cope with hot humid summer days, 28-32C and high humidity, 4 trips to town, truck in the shop for a quick repair, out of the house between 7-8AM three mornings in a row and hours in town, it caught up with me. We have helped cope with Len's stress and fatigue by having the extra mural nurse attend the house on the Mondays and I drive the blood work up to the hospital, but this week he had a "telehealth" (Skype) call with the doctor, so he had to go. Monday was a rough day on him. It was all he could do to get to the hospital and back again and he was exhausted. (Keep in mind, even doing it fast, this was a 3 hour trip.)

When he has a hard time, he is in pain, discomfort, hasn't slept well, can't eat much, loses weight and has a too long trip to town, well, it makes life hard for him and it hurts to see him in pain and for me to be unable to help him. As you can imagine with all that going on the person can get short, tense, terse and a bit "grumpy." That is when it gets hard for me. The days I feel like nothing I am doing is right. No, he never says that and he doesn't blame me, but as a caregiver, spouse, the person closest to him, I DO feel responsible and the tears are close to the surface, sometimes I just go to another room, have a short cry, wash my face and start again.

I think that most caregivers do feel that responsibility. If you are anything like me, you try to predict each possible scenario, how to deal with it, keep meds and non pharmaceuticals on time, prepare meals that will hopefully entice the patient/loved one, meet their physical needs/limitations and keep them healthy, etc., balancing it all can be tough. Anyone who knows me, knows that I have spent the last 8 years of my life, learning more about food, preparation, presentation, creativity, healthy sustainable food, etc... So to be at a loss on what to and how to prepare meals, is more than challenging for me. At this point, I feel almost like I am dealing with a toddler when trying to entice him to eat. (No offense, he is not rude like a toddler but... his palate, interest and diet are not dissimilar.) 

For the first time in years I have some prepared foods on hand - soups, pastas, etc. I need to be able to make something QUICK when he needs it. If I have been to town all day it is hard to make a meal for when he needs it since I can never be sure when I will be home. I do prepare our own foods and left overs but what he liked one day may disagree with him the next. Between the nausea from chemo and the gastronomical issues with his stoma/ostomy - it can be touch and go. For a man who has never been sick, had a headache or hangover, who could eat anything you put in front of him, drank beer not water and loved his fruit and veggies - this is not easy. 

As a caregiver I just plug away, push on and keep trying. Some days I nail it! Everything on time (I am finding timers quite helpful so I don't get distracted.) Finding something he likes for a couple of days - this week it is ground beef in spaghetti with sauce and licorice for snacking... Some days I feel the weight of the world on my shoulders and just worn out. Suffice it to say I am not getting the "other" things done that I should. I am learning to accept that. 

He has been through so much, hospitalized for C. Difficile at Christmas, 5 weeks of Chemo/Radiation in January/February, major surgery in May, and now 4 months of Chemo every other week to be followed by another surgery - who wouldn't be exhausted? At least we are on the countdown, only 3 more chemo sessions after this!

I am very fortunate that for all my husband is going through that he is a kind and gentle man. I can only imagine the challenge it would be to cope if he was not. I have watched people I know care for their loved ones who were not as loving or patient during their illness. I witnessed how being ill can take someone who is a bit grumpy/angry to start with become a person who is cantankerous and miserable. I am grateful that is not our situation.

I do not begrudge in anyway being here for my husband. I couldn't imagine being anywhere else. I love him dearly and even on tough days he is good to me. If he has had a hard day, he apologizes, he doesn't want me to feel he was angry with me, but more with himself, his limitations and disease. He tells me daily he loves me and is so grateful to have me here by his side, he thanks me profusely and brings tears of love to my eyes. That makes it all ok.

I know that today, will likely be a day filled with energy and excitement for him. He has great ideas and thoughts and has to get them down. By Saturday this will begin to wane and by Sunday he will be in the rough days. As mentioned we are surprised how the "chemo" days are the "good" days. The support of the people around me, the contact through the web, the phone calls from my loved ones, they all carry me through. I especially enjoy the silly little SnapChat photos from my grandson - these all make me feel good. I get energized by working on our 7th Annual Golden Unicorn Arts Festival and creating Trip 'n Daisy crafts. Together we shall persevere and get through this! TOGETHER! 

Today is an "at home day" and it is time for me to get things rolling. Yesterday when we came home we were both excited, happy and overwhelmed with the beautiful gifts in the mail from Pawthorn Studio's Etsy shop - our happy hippie selves will truly enjoy the brightly coloured beanies! Check them out if you like happy things! 

Thanks for listening as I try to express my thoughts...

Peace and Love, Daisy aka Sarah

PS: How do you like the new blog look? I decided the rustic theme was no longer working for me and bright, light and airy was much more fun and inspiring! Your thoughts on that?