Well, the quiet eye of the hurricane continues for us. We are 3 days away from the PET scan test that will determine if the cancer has spread and if so how far. In this quiet ... lots of things are still happening.
Having faced the role of caregiving before with other relatives, I have a pattern of preparation that just comes naturally to me. I know my limits. I don’t like trying to juggle too much. And when I am faced with what will be a 24/7 responsibility, I back down everything else. It can always be added back in.
My social calendar get slashed except for immediately family get-togethers. I clean house (I know, I know ... clean house?? really??). Yes, really. For me clutter and dirt while I am trying to focus on important stuff is very stressful. This time, however, I don’t need to do the cleaning. Three months ago we hired a cleaning service. The time had come when I didn’t have the knees for cleaning floors and bathtubs. I also spend time researching the thing that will absorb my life for the immediate future. It is sort of like knowing “your enemy” in a battle.
I’ve already received advice from several friends and family to be kind to myself, to not forget to care of myself and to not deep-dive on all social opportunities. I guess some of these people have seen me go through this before - and know my style. I know this advice is given from a place of worry and love for me. But this is my 4th go-round in this role - not my first “rodeo” as they say. I know what is ahead better than most. It is hard to explain to them that in doing this I am being kind to myself, because I am not trying to squeeze just one more thing (caregiving) into an already booked calendar. So I kindly thank them for their concerns and promise I will be careful. But unless there are caregivers for the primary caregiver - people who build time into their own schedule to relieve you - primary caregivers just keep on putting one foot in front of the other to make life happen for both themselves and the person they are caring for. Truly ... the choices just whittle down to one foot forward at a time - no matter how you mentally approach it or prepare for it.
Regardless of how many times I have done this ... I still try to keep my mind and heart open to the words of others. I recently received some very personal advice from a very very close source, my sister. While she has never been a caregiver of an adult relative - I know she cares deeply for me and my husband. Her own life experience makes her particularly qualified to give a point of view. She has struggled for years with a very difficult disease that left her on dialysis. She has faced her own mortality more than once in that time. She offered me insight into what my husband is experiencing now and thoughts on my own journey.
“It is incredibly painful to realize that you are basically at the end of your life, could be a year, could be 5 years, could be longer, could be shorter. This is what your husband is having to come to terms with now. If I can give you some advice, it would be not to give up YOUR years, as much as possible. Of course he will need a lot of assistance,. But whatever is going to happen, is going to happen. You need to still be able to find joy in your life. Every day is a gift ... those are not just words. It would be good for your husband to treasure each day as well, but that is up to him. You are a separate person with a separate battle.”
Find joy.
That was not on my preparation list.
Next time ...
16 comments:
Richard E Grant, the British actor,has written of his experiences when he was primary caregiver for his wife. She urged him to find "A pocketful of happiness" every day. Wise advice. And that is the name of his book. ❤️🙏
"It would be good for your husband to treasure each day as well, but that is up to him. You are a separate person with a separate battle." Wow, that's powerful. And if I think about it, I have accepted that and am doing that. My husband has cardiac disease, had his first heart attack 13 years ago; he is on borrowed time, too.
Oh, Elaine. I pray that this is not the near end for your precious husband. But your sister's advice is wise. It's extremely hard to do. I've not been in her (or his) shoes, but I've been in yours. Exhausting.
May God bless you and your husband as you journey forward together. Your sister gave wise advice, and it sounds like you have a good plan that will suit you.
A pocketful of happiness - yes, that is about right. I won’t have time for more, I fear.
Yes that statement struck me as well. I have always been the person in this marriage whose glass was “half full.” He was always a “half empty” person. And I always wanted to push him to more positive outlooks. It was very good advice for me - to take care of myself and not try to change someone else. “Whatever is going to happen, is going to happen,” regardless.
I suspect my husband has some good years ahead - he is totally non-symptomatic at present. There are many treatment options to get through. But those years may be filled with some tough treatment reactions. We know so little now. We should be better informed by the end of the week.
Thanks Terra. Hopefully we will get a good outcome.
Wow, guys. In my time away from the blog, Blogger fixed some things. I can actually reply to comments now. WONDERFUL!! And I truly truly appreciate all your positive thoughts.
Good advice from your sister. It can be hard to find joy when you are a caregiver.
Those were excellent words from your sister for everyone. Treasuring each day and appreciating moments of joy can easily get lost. Positive thoughts on the upcoming test results.
Having been a caregiver 3 times before - I know you are absolutely correct. I truly believe that caregiving is the hardest job in the world - not the caregiving at the beginning of life (like in raising children) but the caregiving that happens at the end of life - because no matter what you do - in the end - the outcome is death. At least that has been my experience all 3 times in the past.
Yes, I just wish deeply that she didn’t have to pay such a dear price to get that insight. Her struggle breaks my heart sometimes.
Very good advice from your sister.
As others have said, your sister gave good counsel. Finding joy . . . I know it's there but have been struggling myself to find it lately. But you get to grab it wherever it appears. I'm holding you, your husband, and your sister in the light of strength and hope.
Big sigh here. That was some profound advice from your sister. Not at all what I was expecting. But so wise.
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