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1 day ago · When the stuff hits the fan in Caregivers

Scott, dealing with 'never borrow trouble' has been a constant battle for years! She is who she is and probably won't change but my wife constantly anticipates what might happen next in all areas of life. I keep lobbying for us to make the most of today, the time we have right in front of us, going back to the fact that no one knows how much time they have.

rmfticker, no, she's not confined at all. In fact, she's pretty active still. We just got back from our first of two routine trips to the "gym" (activity center) every Tues & Thurs. Yesterday we drove 2 1/2 hours to meet our son and his family at a dude ranch west of here (Texas). We take at least one trip to the Caribbean every year for me to SCUBA dive and, even though she used to join me, she still loves going there and usually on the boat with me. The key with her is to be distracted and travel is her favorite distraction. On paper, she should be pretty sick but in reality she's doing very well. Her treatments are now weekly instead of every three weeks like before and her blood work is not improving so don't know how long this will last but, once again, that's why I keep pushing for living in the moment!

Thanks all!

1 day ago · When the stuff hits the fan in Caregivers

Thank you all but my sense of your comments is that I was looking for help for me dealing with this reality. I'm mostly looking for how I will help her deal with this. She struggles now and, if/when it gets worse, I know she will lose all quality of life. It's far easier for me to sit back and try to be the cheerleader than for her to have to face her own destiny. How does the patient come to terms with what they face? I'm sure it's different for everyone but, to come full circle, maybe that's where my feelings come in… the feeling of helplessness watching your loved one deal with something and knowing there's not a damned thing to can really do to change it. I think it's common for some people (men especially…?) to want to "fix" things when they go wrong. I know that's been my role for many years. However, there are some things no one can fix.

4 days ago · When the stuff hits the fan in Caregivers

My wife has outlived her expected lifespan (MDS, RCMD) by quite a long time and I FEEL like the current status quo will continue indefinitely. However, I suspect that one day things could very well take a turn for the worse and we'll get the BAD NEWS. AML is the next step in this progression. If that day comes, what am I to say? I've been telling her for years that NOBODY knows what tomorrow will bring, we never know how long we have but getting a(another) bad diagnosis will push her over the edge and me along with her. Words only go so far. I see fear now and I know more bad news will only freak her out. I will, of course, stay by her side come hell or high water, but it won't be enough,

Tue, Mar 26 8:49am · Long-term caregiving: need a place to vent in Caregivers

Susan2018, I was just venting. 🙂 My wife FEELS pretty good most of the time despite years of first chemo and now weekly, sometimes 2X/week, procrit shots to try to keep her blood count up. The only wearing part is that it's always on her mind and, thus, always being talked about. I always tell her that nobody knows when the end will come, it could happen to me tomorrow, so let's focus more on the good part of today! It can always get worse. I can't judge her for thinking that way, I haven't walked a mile in her moccasins, I just try to promote a more positive outlook. Thanks!

Tue, Mar 12 4:05pm · Ambien: How can I sleep without it? in Sleep Health

Just now found this section. My wife has been to three sleep MD's… no help. She takes Ambien on nights she really needs to sleep but lately has been taking CBD oil, max dose, to try to help go to sleep but usually winds up taking Remeron (mirtazapine) which is an anti-depressant but has worked for her for years… unless she takes it too frequently. If she wakes up during the night, she takes Sonata to get back to sleep quickly. She hates meds but see no other way out!

Tue, Mar 12 3:39pm · Long-term caregiving: need a place to vent in Caregivers

Scott, HA! I don't feel the need to punch, my wife and I maintain a very good level of communication so it never gets to that point. Neither of us can change the reality of the situation so my focus is always on trying to see the glass as half full. She gets sucked into the opposite perspective so I am the cheerleader.

Tue, Mar 12 3:35pm · Long-term caregiving: need a place to vent in Caregivers

Colleen, thanks but I'm not concerned title. I do like the specificity of it because it brings people with similar experiences together.

Tue, Mar 12 9:07am · Long-term caregiving: need a place to vent in Caregivers

Thanks, Georgette!

I haven't had a place to talk about it until now.