A year ago, around this time, I took time off work to be with Cleodman. We knew it was the beginning of the end. I wanted to spend every second with him. It was the hardest months of our lives. Waiting for the inevitable.
I couldn’t imagine being at work away from him. But I know that for many caregivers, staying at home is not an option.
If you’re a caregiver that works, what do you do for your love one? Do you leave meals ready? Call often? Text? Have family stay with them?
I figured we could share tips and maybe vent about how we feel. I know the days were long when I had to be away from him. I felt worried and anxious.
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Cleodwoman
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Hi - at the very start of the PC diagnosis my younger sister was diagnosed with Pancreatic cancer. I'm sure you all can imagine the stress and heartache. It did not help when my friends kept saying "I don't know how you can handle this". The only advice I have is that I had to rise above all of chatter and be a caretaker to 2 people at the same time. It was my choice of course. You do what you can with the time you have. I work fulltime and took every spare second of every day and night to be with my sister and checked in with my husband who understood the severity of her diagnosis. Our son and daughter in law moved from Dallas to Ohio and our Daughter and her at the time Fiancee decided to narrow down their Residencies to local instead far away Hospital. It takes a village to care for loved ones. The whole family pitches in. With so many medical family members we take advantage of those special days where we can all be together. (There are very few) My husband's siblings also try and visit when they can.
I cook extra food at dinner so my husband can eat a lunch while he works at home.
We call and text throughout the day during the work week.
At this time I don't feel as anxious as I did with my sister who passed a year from diagnosis.
When the time comes, I will work from home. I won't leave him alone if he's in pain.
I’m sorry about your sister. I’m glad you were able to be there for her. How do you split yourself in two and not feel like you’re neglecting one of them. You did a good job at balancing things out. I’m happy your husband was understanding. Being a caretaker requires a lot of that person, but I wouldn’t of changed a thing.
My husband and I work together and I often think of how fortunate I am to have this situation. We have an accounting practice and have scaled it back a little with plans to shut it down at the end of the year. It's been too much and is getting too hard on my husband. I can't imagine how hard it must be for those working and being away from their husband all day. How hard it would be to focus during the day and how the guilt would set in and the workload would increase on those days that you are able to stay home. Creating more stress. I feel that we are all examining our to do lists daily with our priorities being our husbands that we adore. As it should be. I do wonder how many of us have ourselves at the bottom of this list. I know I do. You hear about having to make sure that you take care of the caregiver and I know this must be true. And I know that it's probably a bad thing to not care that I'm not taking care of me. He's the biggest part of me and I choose to focus on him. If I said any of this outloud to anyone I'm sure it would be a shitstorm. I'm also pretty sure I'm not alone here.
I completely understand your point of view. My hubby is my number one concern. I am placing myself without any hesitation or second thought on the bottom of my to do list. I have been told by others how important it is to re-charge my own batteries. I just do not know how to do this. We have been together for 35 years and whatever we did was done together. I have no need to be away from him to "re-charge". It may not make sense to them but it works for me. I was able to change my hours to part time so that I can be home earlier and we can go on our daily walk and spend time together. Life is precious.
People will tell you what they believe is right, and that’s ok. But only we, individually, know what works for us. I was the same way, I didn’t need time to recharge. Being with him, laughing and making memories was my recharge. I wouldn’t change a thing.
Please stay around, My wife is still somewhat in denial even after 5 yrs. One day if I have a second BCR and if it progresses, it will be nice if she can reach out to you for support. I watched you and Cleodman go through your trip to the end and appreciate all the time the two of you put into this forum. Life Is Good, especially with moral support..
Wives and caregivers will always be in denial. Even now, I question, did that really happened? How? I’m sorry we have to go through this and my heart breaks for all of our men. Of course I will be here along with everyone else. Please give her a hug for me.
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