Big Changes: I haven't been online the... - Blue Faery Liver ...

Blue Faery Liver Cancer

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Big Changes

DancingEyes63 profile image
DancingEyes63Caregiver

I haven't been online the last week because we've been very busy. When our dear friend Wendy lost Dave, it made me realize just how fast it can happen. Also that when Jimmy is gone, I can never get time wasted back. So we've decided to make sure we really do make the most of what time is left. I'm so tired of feeling torn between my job and Jimmy. Tired of leaving him alone while I do "work" that's not nearly as important as being with my husband. We've worked for our church for two years helping run a homeless shelter/ rehabilitation center. Part of our pay was an apartment on the premises. I've enjoyed helping the people that have come through here as well as working with the animals, gardening, canning food we've grown, sharing my knowledge with others, being able to work alongside Jimmy. Then when Jimmy got ill, I was pressured to "think about putting him in a nursing and to make it easier on me" . Translation is out him away so taking care of him doesn't interfere with what we want you to do for us. I also worried because there was many times I felt Jimmy was doing more than he needed to be doing because he'd been quilted into it. Blinders have fallen away from my eyes and I've seen just how selfish and un-Christian the leaders of our church actually are. The Pastor's wife actually tried using Jimmy's caregiver as a maid, asking the caregiver to basically do things that she didn't want to have to do herself. Such as dusting the collection of birdhouses on shelves all around the foyer???

So we decided to ask Social Security to release the rest of his SSI back pay early (which they did), purchase a 5th wheel and leave my job here, our apartment and this church.

We were going to park it at an RV lot but Jimmy's sister and brother in law have helped get part of their property ready so we can park it there. It's down the road from where they live on property that used to have their old milk barn on it. This way we can afford to live on Jimmy's Social Security without me having to work right now. So I'll be able to take care of him and we can enjoy the time we have left. So we've been busy this week packing up and getting electric, water, and septic ready over there as well as just clearing an area to park the trailer. Looking forward to less stress in our life. ❤❤❤

Sharon

5 Replies
Curly_Girl profile image
Curly_GirlCaregiver

Sharon!! Oh my gosh, I wish you could hear me cheering you on. I love how you stepped back, reassessed the situation and made moves that are right for you and Jimmy. You don't need to be told that you will not regret this decision even one iota.

Dave and I lived a very simple, quiet life and because I am on disability myself (for my deafness) I was lucky enough to be able to spend all of my time with him. The caregiving was just second nature, part of the whole "in sickness and in health" of our vows. I can truly say that I never took one minute of our time together for granted, and you will not either. It is the best gift you could give the both of you.

My mantra has been "acceptance and strength" and that, along with just focusing on the moment that is in front of me right now, really helped me to fully appreciate and be thankful for what we had (versus worrying about that unknowable future, which I used to waste so much time on).

As one who loves animals, gardening, and canning (all interests that I share, BTW), you are clearly a nurturer. Enjoy these days and know you have friends here for any support you may need! Sending much love and good energy to you both, my friend. 💚💚

spazure profile image
spazureModerator

I love it! Making the most of the life you have! Glad to hear you're making things work for your family.

I am so DANG PROUD of you. It's not easy to make those life-changing decisions. It takes real courage. Due to my difficult financial situation, I assumed I would have to work during Adrienne's illness. I was very fortunate. A family member provided financial assistance. Adrienne's high school community paid our rent one month. We were blessed. Except for a few extra gigs on the weekends when I knew I had someone to care for her, my last day of work was Day #1 of Adrienne's diagnosis. May 16, 2001. It was also her last day at school (in-person). We never get that precious time back. Enjoy every freakin minute. Love, Andrea

Good for you! God bless

bwpickard profile image
bwpickardCaregiver

You two have made an incredible decision for both of you!!!! Good for you!!! Time is so precious and whether it's weeks or months or years, you will have treasured memories. My husband was diagnosed in March 2019, and we both continued working for another year though he was able to work off and on due to medical leave and donated vacation from coworkers. I retired in March 2020 literally the week before COVID locked us all down and we spent time with our children and grandchildren during the COVID lockdown. Because he was doing better than doctors expected, there were times when we thought maybe he could beat this awful disease and prognosis. The month before we lost him unexpectedly in June of this year due to a complication was filled with our younger daughter's small family wedding, our granddaughter's first birthday, a family trip to the beach, father's day outing to a minor league baseball game on the Sunday before he passed away the next Saturday. I miss him every day and am SO grateful for that last month and the pictures and memories we have. Soak in every day!!! God bless you!!!