Caregiving Frustrations: When the stuff hits the fan!

@bradmn. You story sounds somewhat like mine. When my husband was 64 he also had a calcium score done and the results were awful. He had the test done because his father, grandfather, an great grandfather had all died of heart attacks at age 64. Needless to say, I was stunned. Now 8 years later, he’s in good health taking care of me since I got a brain lesion. We’ve also been focusing on the here and now, but I decided that as long as I felt well enough to do things, we would. We successfully went on a trip to Europe and right now in Crested Butte, CO visiting grandchildren! We take it one day at a time, are prepared, but also, try to have a life and have fun.
It sounds like you’ve been a wonderful caregiver for your wife, so maybe now is the time to take care of yourself. Do some of the things you’ve wanted to do, but also plan for the future. It is so hard. I wish you all the best on this difficult journey and I know your wife is lucky to have you

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BTW, I am working on my SCUBA instructor certification. 🙂

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Becky, thanks so much for your message! Hearing from someone going through the similar stuff is exactly what I needed! The initial fear is the hard part but learning more about what's possible is incredibly uplifting. When you say he's "in good health," what does that mean? I haven't meet with my cardiologist yet to learn what my treatment will be. I've got a stress test on Tuesday. I have continued to swim my mile and do other exercise things. Not to sound morbid or like a martyr but my main concern is being here for my wife! She's been dealing with her MDS for years and I've always been there to support her. I don't think she would do well if something happened to me and I don't want her to have to find out. She's been through enough!

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Don't ask me why... I know my oldest granddaughter wants to learn but she's only 7. I'd like to start training her before she is old enough to actually get certified and give her a great background before she goes off on her own. She and I have alway have a great time in the water together.

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Becky, thanks so much for your message! Hearing from someone going through the similar stuff is exactly what I needed! The initial fear is the hard part but learning more about what's possible is incredibly uplifting. When you say he's "in good health," what does that mean? I haven't meet with my cardiologist yet to learn what my treatment will be. I've got a stress test on Tuesday. I have continued to swim my mile and do other exercise things. Not to sound morbid or like a martyr but my main concern is being here for my wife! She's been dealing with her MDS for years and I've always been there to support her. I don't think she would do well if something happened to me and I don't want her to have to find out. She's been through enough!

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Very kind of you, Becky! I had to look back through this thread to see what all I have shared in the past. For some reason, I didn't see anything about my wife's transfusions which began in late June. Maybe I missed it. Her weekly injections to keep her blood counts up apparently have not been enough so the next step is transfusions. After the first one, we realized it was not that big of a deal in terms of having it done. It is a big deal, however, for her prognosis. The only other treatment is bone marrow transplant but that's very risky and is only offered, to my knowledge, to younger, healthier people. Maybe if it was that last resort... I guess it's just a matter of risk assessment. The injections used to be every three weeks. Now they're every week. The transfusions are about every two weeks but they may get more frequent as her body is less and less able to produce healthy blood cells. At some point, that will no longer work....

I hope she NEVER DISCOVERS THAT I'M WRITING THIS... I'll be in big trouble. 🙂 She's very private and hardly anybody knows about her disease except me and our kids. I've told my three remaining family members but she doesn't share it with her friends. Makes me feel disloyal but I need someone to talk to. She has me to vent to and I am always playing the cheerleader role to help keep her from getting depressed about all this. Most of the time, we lead a normal life except for the doctor visits (our new normal). She has amazed everyone at the oncologist office because she still goes to her work out class and has recently increased it to four times a week. I always tell her that the most either of us can do is to try to stay as healthy as we can! That's all we can control, the rest is out of our control. I think by me staying positive all the time it really helps her and we are constantly holding hands and being affectionate. I tell her I love her frequently and she expresses her appreciation of having me there to support her. I think it's about as good as it can be considering the reality of the situation.

As for me, I had heart catheterization and, going in with such a high calcium score, I was scared. I got what I considered great news... most of my arteries were only 25% blocked except for my LAD which had a "small part" (not sure what he meant) that was 40%. They don't do stents until you get to 70% or above so I didn't get any. Now, I'm also working out with my wife (not in her class, I do other stuff) and eating as healthy as I can. My cardiologist doesn't want to see me for six months and I'll get my cholesterol numbers again. My weight is as low as it's been in 20 years and I'd like to lose just a bit more. I'm still very anxious about the whole thing because I used to think I was perfectly healthy... but I know it was a good thing to find out when I did so that I can now work harder to be as healthy as I can. Like I said, we now share this goal for different reasons but that's our focus and it provides a positive attitude for us both to know we're at least trying to hold it all together.

May have said this before but my purpose in life is to give her the best life I can so we're going to Greece and Santorini in October. Don't know how much longer we'll be able to travel so gotta do as much as we can, while we can!

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Very kind of you, Becky! I had to look back through this thread to see what all I have shared in the past. For some reason, I didn't see anything about my wife's transfusions which began in late June. Maybe I missed it. Her weekly injections to keep her blood counts up apparently have not been enough so the next step is transfusions. After the first one, we realized it was not that big of a deal in terms of having it done. It is a big deal, however, for her prognosis. The only other treatment is bone marrow transplant but that's very risky and is only offered, to my knowledge, to younger, healthier people. Maybe if it was that last resort... I guess it's just a matter of risk assessment. The injections used to be every three weeks. Now they're every week. The transfusions are about every two weeks but they may get more frequent as her body is less and less able to produce healthy blood cells. At some point, that will no longer work....

I hope she NEVER DISCOVERS THAT I'M WRITING THIS... I'll be in big trouble. 🙂 She's very private and hardly anybody knows about her disease except me and our kids. I've told my three remaining family members but she doesn't share it with her friends. Makes me feel disloyal but I need someone to talk to. She has me to vent to and I am always playing the cheerleader role to help keep her from getting depressed about all this. Most of the time, we lead a normal life except for the doctor visits (our new normal). She has amazed everyone at the oncologist office because she still goes to her work out class and has recently increased it to four times a week. I always tell her that the most either of us can do is to try to stay as healthy as we can! That's all we can control, the rest is out of our control. I think by me staying positive all the time it really helps her and we are constantly holding hands and being affectionate. I tell her I love her frequently and she expresses her appreciation of having me there to support her. I think it's about as good as it can be considering the reality of the situation.

As for me, I had heart catheterization and, going in with such a high calcium score, I was scared. I got what I considered great news... most of my arteries were only 25% blocked except for my LAD which had a "small part" (not sure what he meant) that was 40%. They don't do stents until you get to 70% or above so I didn't get any. Now, I'm also working out with my wife (not in her class, I do other stuff) and eating as healthy as I can. My cardiologist doesn't want to see me for six months and I'll get my cholesterol numbers again. My weight is as low as it's been in 20 years and I'd like to lose just a bit more. I'm still very anxious about the whole thing because I used to think I was perfectly healthy... but I know it was a good thing to find out when I did so that I can now work harder to be as healthy as I can. Like I said, we now share this goal for different reasons but that's our focus and it provides a positive attitude for us both to know we're at least trying to hold it all together.

May have said this before but my purpose in life is to give her the best life I can so we're going to Greece and Santorini in October. Don't know how much longer we'll be able to travel so gotta do as much as we can, while we can!

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