Jrzygrl
Senior member
- Joined
- Feb 14, 2017
- Messages
- 742
- Reason
- Lost a loved one
- Diagnosis
- 08/2014
- Country
- US
- State
- NJ
- City
- X
How I hate that question now.
It's become almost a default greeting. I know most people are trying to be kind by asking, but I honestly don't know how to answer anymore. I usually just say "We're OK" or "We're hanging in there". But honestly, we're not OK. And I'm sometimes just hanging on by a thread. So what should I say? "Yeah, life pretty much sucks right now?"
We've hit a rough patch lately. No big changes physically, just the steady decline. It's this slow, downhill roll that is getting the best of us. DH is frustrated and angry. He wants it "to be over with" in his words. I don't think he's ready to take any steps to hasten it, but he is miserable. I feel for those who have fast progression and are gone so soon, but honestly, this long-term existence can be horrible too. And I do mean existence, I can't say we have much of a life right now.
DH can't do much of anything for himself. I've tried to automate as much as possible with Alexa and other stuff to keep him as independent as possible. But what does one do to fill the hours when they have no use of their arms and legs and are constantly sore and fatigued? He's desperately bored. He spends hours upon hours watching TV. At night, in bed, he uses his iPad to watch videos or read. And winter has been tough. He's cold all the time, so he doesn't want to go out. So he goes from the bedroom, to the bathroom, then to the sunroom, where he sits with the heat up, an electric blanket and the TV on until it's time to go to bed again. He eats in there and even has me bring the urinal so he doesn't have to drive his chair to the bathroom. And he wants me to sit there to be at his beck and call all day.
Sleep has been bad this week. Sunday night, he had what I can only describe as a panic attack. He said he was hot and wanted the covers off. Then he said his heart was beating too fast. He was crying and telling me he wanted to go and how much he loved me. I checked him for a fever or anything else that I could think of and nothing was physically wrong. So I tried to calm him down, but it took a long time. I gave him an additional Ativan (he takes a number of meds at night for sleep and anxiety). Finally, he calmed down enough and did get some sleep, but then I couldn't fall back asleep. The scene repeated itself, to a somewhat lesser degree Monday night. Tuesday he seemed to sleep a little better, but then yesterday, all hell broke loose again.
He woke up around noon and wanted coffee. So I got him coffee and helped him with it in bed. He's gotten in the habit of staying in bed until he has to go to the bathroom (BM). So I watched the news with him until he said he had to go. Got the sling under him and hooked up, and he says "You didn't stretch me yet." I usually stretch him and do his ROM before he "goes". He said he wanted me to put him back in bed after and stretch him. OK. Hoyered him to the commode, where he has an awkward way that he "has" to be positioned to go. First he said he was too far to the left. Lifted him again, put him back down. OK now? "Sure" was the answer I got. So I left to give him some privacy and stood on the other side of the door. He called for me and I see a giant puddle of urine on the floor. And I think somewhat of a smirk on his face. I didn't say anything, just cleaned it up. He commented on how I wasn't doing that correctly either. Got him back in bed and went back to clean the commode and throw out the mess. Go back and start to stretch him - admittedly, I'm a bit annoyed. Again, he says I'm not doing it right and starts yelling that I don't care about him. Long story short, we ended up yelling at each other for probably a half hour. I feel horrible. I don't know how everyone else seems to keep it together going through all this.
We're back to OK for now, but I know this probably won't be the last time things go awry. The whole dynamic of our relationship has changed so much due to the situation. We both were independent but our strengths and weaknesses complemented each others, so we worked well together. I love him and I know he does love me, but we're struggling.
Sorry this has gone on so long, but I've been holding a lot in and this weeks events, I guess have been my tipping point. I needed to vent. I'm just so sad.
It's become almost a default greeting. I know most people are trying to be kind by asking, but I honestly don't know how to answer anymore. I usually just say "We're OK" or "We're hanging in there". But honestly, we're not OK. And I'm sometimes just hanging on by a thread. So what should I say? "Yeah, life pretty much sucks right now?"
We've hit a rough patch lately. No big changes physically, just the steady decline. It's this slow, downhill roll that is getting the best of us. DH is frustrated and angry. He wants it "to be over with" in his words. I don't think he's ready to take any steps to hasten it, but he is miserable. I feel for those who have fast progression and are gone so soon, but honestly, this long-term existence can be horrible too. And I do mean existence, I can't say we have much of a life right now.
DH can't do much of anything for himself. I've tried to automate as much as possible with Alexa and other stuff to keep him as independent as possible. But what does one do to fill the hours when they have no use of their arms and legs and are constantly sore and fatigued? He's desperately bored. He spends hours upon hours watching TV. At night, in bed, he uses his iPad to watch videos or read. And winter has been tough. He's cold all the time, so he doesn't want to go out. So he goes from the bedroom, to the bathroom, then to the sunroom, where he sits with the heat up, an electric blanket and the TV on until it's time to go to bed again. He eats in there and even has me bring the urinal so he doesn't have to drive his chair to the bathroom. And he wants me to sit there to be at his beck and call all day.
Sleep has been bad this week. Sunday night, he had what I can only describe as a panic attack. He said he was hot and wanted the covers off. Then he said his heart was beating too fast. He was crying and telling me he wanted to go and how much he loved me. I checked him for a fever or anything else that I could think of and nothing was physically wrong. So I tried to calm him down, but it took a long time. I gave him an additional Ativan (he takes a number of meds at night for sleep and anxiety). Finally, he calmed down enough and did get some sleep, but then I couldn't fall back asleep. The scene repeated itself, to a somewhat lesser degree Monday night. Tuesday he seemed to sleep a little better, but then yesterday, all hell broke loose again.
He woke up around noon and wanted coffee. So I got him coffee and helped him with it in bed. He's gotten in the habit of staying in bed until he has to go to the bathroom (BM). So I watched the news with him until he said he had to go. Got the sling under him and hooked up, and he says "You didn't stretch me yet." I usually stretch him and do his ROM before he "goes". He said he wanted me to put him back in bed after and stretch him. OK. Hoyered him to the commode, where he has an awkward way that he "has" to be positioned to go. First he said he was too far to the left. Lifted him again, put him back down. OK now? "Sure" was the answer I got. So I left to give him some privacy and stood on the other side of the door. He called for me and I see a giant puddle of urine on the floor. And I think somewhat of a smirk on his face. I didn't say anything, just cleaned it up. He commented on how I wasn't doing that correctly either. Got him back in bed and went back to clean the commode and throw out the mess. Go back and start to stretch him - admittedly, I'm a bit annoyed. Again, he says I'm not doing it right and starts yelling that I don't care about him. Long story short, we ended up yelling at each other for probably a half hour. I feel horrible. I don't know how everyone else seems to keep it together going through all this.
We're back to OK for now, but I know this probably won't be the last time things go awry. The whole dynamic of our relationship has changed so much due to the situation. We both were independent but our strengths and weaknesses complemented each others, so we worked well together. I love him and I know he does love me, but we're struggling.
Sorry this has gone on so long, but I've been holding a lot in and this weeks events, I guess have been my tipping point. I needed to vent. I'm just so sad.
