Today a friend and her husband have been married 23 years.
I love seeing things like that. It used to make my heart ache every time I saw something like that. While happy for my friends and family, it still made me realize how short my ever after really will be. Life with terminal diseases sucks, but at the same time is a blessing.
I know my forever after won't be as long as yours, my parents, my grandparents, and at the worst moments I ask myself "is this it, has my ever after ended today"? Will there be another day for us? Will he remember who I am tomorrow?(there have been recent days that no, he doesn't know me).
I just take it day by day, and I try to make the most out of every minute we will have together.
I was talking with my mom this morning about something I want to do, but know I can't until Lee is gone. Mom said "well that won't be for another 10-15 years". Reality is, lewy body dementia prognosis is 5-7 years. The Parkinson's disease and leukemia are an issue, and there's a timer running out on those also. I take it Month to month, day to day, hour to hour, minute to minute, second to second, and count myself as lucky. We know it will end sooner rather than later. We can plan for it, I can plan for my future without him, and we can let ourselves live like today is our last day together.
I encourage everyone to live that way. Its not sick or morbid, its living for now instead of tomorrow because you never know what tomorrow will bring. Live, love, laugh, and make the most out of today.
Showing posts with label Terminal disease. Show all posts
Showing posts with label Terminal disease. Show all posts
Monday, August 22, 2016
Sunday, June 19, 2016
Life as a caregiver
I got a message the other day that really made me smile, and cry. It warmed my heart. I really needed to hear it after a really bad day.
I want to talk about being a caregiver to a spouse that's terminally ill.
It's hard. It sucks. Its even worse when you have to work full time also.
There's no other way to put it.
We don't do it for the praise, we know our spouse appreciates it, we know how they feel.
We sure as hell don't do it for money, there is no pay.
We don't do it to make ourselves feel better, its physically and mentally exhausting.
We do it out of love.
We do it out of compassion.
We do it because our heart says to.
We don't do it to impress people, there are days we go unshowered, teeth not brushed, hair pulled back in a ponytail because we were so busy getting our partner ready for an appointment we forgot to brush our hair.
I often get asked "how do you do it?"
There is no answer to that really. It's hard as all get out sometimes. It's not easy some days.
It's day in and day out, sleepless nights, tears in the shower worried about the one we love.
Its worrying about forgetting appointments, or being late because our spouse is having a bad day.
Its trying to focus just on our partners needs, physical and mental and not worrying about what others think, family or friends.
It's worrying that the next fall will result in bad injury, someone calling adult protective services, or even death.
Its worrying about sleeping through that fall and our partner laying there in pain, calling out to you but you are so exhausted you don't wake up.
It's guilt when you forget one their pills, or forget to take them with you when you get brave enough to take them on an all day outing.
It's love.
I want to talk about being a caregiver to a spouse that's terminally ill.
It's hard. It sucks. Its even worse when you have to work full time also.
There's no other way to put it.
We don't do it for the praise, we know our spouse appreciates it, we know how they feel.
We sure as hell don't do it for money, there is no pay.
We don't do it to make ourselves feel better, its physically and mentally exhausting.
We do it out of love.
We do it out of compassion.
We do it because our heart says to.
We don't do it to impress people, there are days we go unshowered, teeth not brushed, hair pulled back in a ponytail because we were so busy getting our partner ready for an appointment we forgot to brush our hair.
I often get asked "how do you do it?"
There is no answer to that really. It's hard as all get out sometimes. It's not easy some days.
It's day in and day out, sleepless nights, tears in the shower worried about the one we love.
Its worrying about forgetting appointments, or being late because our spouse is having a bad day.
Its trying to focus just on our partners needs, physical and mental and not worrying about what others think, family or friends.
It's worrying that the next fall will result in bad injury, someone calling adult protective services, or even death.
Its worrying about sleeping through that fall and our partner laying there in pain, calling out to you but you are so exhausted you don't wake up.
It's guilt when you forget one their pills, or forget to take them with you when you get brave enough to take them on an all day outing.
It's love.
Wednesday, April 6, 2016
Strong for Life, Or how do you do what you do
I often get told I am one strong woman. I don't see myself as such. Here is my response to that statement.
Strong... Depends on the day :) I have many days I close myself in the bathroom and cry and feel sorry for myself and my life, then put on a happy face and go back to life. I'm in a facebook group for spousal caregivers and it's been a lifesaver. I can say things there I can't elsewhere for fear that people will think I'm a horrible person or say negative things about it when I just need to vent. I can talk about anything, kids, hubby, me.... Someone there has been there done that thought that. I think half my friends would drop me fast if I said something like how much easier it would have been if he had never woken from the coma 2 1/2 years ago, half of the rest would say things along the lines of how can you think something like that. The remaining 25% would vary between texting, messaging or calling to ask what's up and why are you thinking that, and saying I understand, what can I do to help.
Usually those feelings happen when I have to cancel something I'm looking forward to because he needs me. I married him knowing he had parkinsons (triggered by surgery to repair a brain aneurysm), and a probable stroke during the surgery(he had underlying parkinsons, the brain trauma kicked it into high gear).
I'm an RN and I know better than most what will happen with the parkinsons, that only makes it easier from a clinical standpoint, not as a wife. They discovered the leukemia after we were married. It wouldn't have changed the outcome, I still would have married him.
The kid...she's a lot easier to face, mental illness is a lifelong illness. It could get worse at any time, and I am thankful she's as stable as she is. When she was a teen it was harder emotionally for me. All the what ifs, how will she be able to do anything, live her dreams, what will happen if something happens to me, will she have to live at home forever (I wouldn't mind, but it would mean that she's not likely living her dream of becoming a marine biologist). Its also not a terminal disease and new medications and treatments come out fairly often and are much better at managing the disease. For her there is hope and always will be. She is currently unmedicated by her choice. She's managing it with learned techniques, She's outspoken about mental illness and doesn't hide it, so all her friends and professors know.
It's life, you do what you have to. You fall down, you have a tantrum, you pick yourself up and step back up to the plate for the next inning.
Life goes on.
Life in and of itself is a terminal disease.
Life has a way of going on.
You find the small victories and hold to them tightly, because when there are setbacks you need a victory to remind of the good in life.
Strong... Depends on the day :) I have many days I close myself in the bathroom and cry and feel sorry for myself and my life, then put on a happy face and go back to life. I'm in a facebook group for spousal caregivers and it's been a lifesaver. I can say things there I can't elsewhere for fear that people will think I'm a horrible person or say negative things about it when I just need to vent. I can talk about anything, kids, hubby, me.... Someone there has been there done that thought that. I think half my friends would drop me fast if I said something like how much easier it would have been if he had never woken from the coma 2 1/2 years ago, half of the rest would say things along the lines of how can you think something like that. The remaining 25% would vary between texting, messaging or calling to ask what's up and why are you thinking that, and saying I understand, what can I do to help.
Usually those feelings happen when I have to cancel something I'm looking forward to because he needs me. I married him knowing he had parkinsons (triggered by surgery to repair a brain aneurysm), and a probable stroke during the surgery(he had underlying parkinsons, the brain trauma kicked it into high gear).
I'm an RN and I know better than most what will happen with the parkinsons, that only makes it easier from a clinical standpoint, not as a wife. They discovered the leukemia after we were married. It wouldn't have changed the outcome, I still would have married him.
The kid...she's a lot easier to face, mental illness is a lifelong illness. It could get worse at any time, and I am thankful she's as stable as she is. When she was a teen it was harder emotionally for me. All the what ifs, how will she be able to do anything, live her dreams, what will happen if something happens to me, will she have to live at home forever (I wouldn't mind, but it would mean that she's not likely living her dream of becoming a marine biologist). Its also not a terminal disease and new medications and treatments come out fairly often and are much better at managing the disease. For her there is hope and always will be. She is currently unmedicated by her choice. She's managing it with learned techniques, She's outspoken about mental illness and doesn't hide it, so all her friends and professors know.
It's life, you do what you have to. You fall down, you have a tantrum, you pick yourself up and step back up to the plate for the next inning.
Life goes on.
Life in and of itself is a terminal disease.
Life has a way of going on.
You find the small victories and hold to them tightly, because when there are setbacks you need a victory to remind of the good in life.
Wednesday, December 9, 2015
Respect comes in all shapes and sizes
Life takes us on adventures. Some we plan, some we fall into, some that find us.
Last month an adventure found us. Six days with no power. A wind storm with gusts of 71 mph slaughtered trees that had been standing for hundreds of years. It took out power lines, busted cement, broke open roofs, and took a couple lives.
We were very fortunate and we were prepared. We always have enough food on hand to last us a couple of months.
We have some stored water , not enough for anything long term, but we have a couple filters on hand. We are still seriously under prepared for anything real long term.
we are prepared for a minor to moderate urban disaster, to shelter in place.
That's not what I want to discuss though. My mantra, "life will go on", has again shown us the meaning of life. That meaning of life comes in the form of two very sweet young adults who, despite it all, got married.
The world spins, day changes to night, summer to fall. It has never failed us, but our own hearts have been known to fail us. How do we prevent that from happening?
Respect. Respect for us, our partner, our children, our time.
I have learned that if I let respect for my spouse start to slide my heart starts to harden. When I let myself feel something he did was only done to irritate me my words start to bite.
When I start to get mad at his disease it reflects onto him as a person and makes him feel he is the disease.
When he asks for my time I have to remind myself he doesn't ask for much, and he's not doing it out of a lack of respect for me and my free time, he's doing it because he loves me and wants to spend time with me. I need to prioritize my plans and remember what lifes priorities are now, terminal diseases change the entire game plan.
Last month an adventure found us. Six days with no power. A wind storm with gusts of 71 mph slaughtered trees that had been standing for hundreds of years. It took out power lines, busted cement, broke open roofs, and took a couple lives.
We were very fortunate and we were prepared. We always have enough food on hand to last us a couple of months.
We have some stored water , not enough for anything long term, but we have a couple filters on hand. We are still seriously under prepared for anything real long term.
we are prepared for a minor to moderate urban disaster, to shelter in place.
That's not what I want to discuss though. My mantra, "life will go on", has again shown us the meaning of life. That meaning of life comes in the form of two very sweet young adults who, despite it all, got married.
The world spins, day changes to night, summer to fall. It has never failed us, but our own hearts have been known to fail us. How do we prevent that from happening?
Respect. Respect for us, our partner, our children, our time.
I have learned that if I let respect for my spouse start to slide my heart starts to harden. When I let myself feel something he did was only done to irritate me my words start to bite.
When I start to get mad at his disease it reflects onto him as a person and makes him feel he is the disease.
When he asks for my time I have to remind myself he doesn't ask for much, and he's not doing it out of a lack of respect for me and my free time, he's doing it because he loves me and wants to spend time with me. I need to prioritize my plans and remember what lifes priorities are now, terminal diseases change the entire game plan.
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