Hi Xenia, Jim and all you other special care-givers.
I'm wondering If anyone else experiences what I call the "full tilt or no-go" syndrome? From what I've read here, most of you are caring for someone from home. And I imagine that's pretty much full-tilt all the time? For me, because I'm handicapped and Karl is in a nursing home, it seems that he needs ALL of my attention at a given time, or none of it. My days, or a great part of them, are spent either talking to or about him over the phone. Doctors, pharmacists, specialists, dentists, you name it, it's all done through me, and by me. And I wouldn't want it any other way. He calls me anywhere from five to 10 times a day, sometimes that many times in a half hour period. One day he called me 30 times in the space of 1/2 hour (yes I did the math!) to ask me what city we live in. Sometimes he's happy or at least contented - those are the good times - others he's in tears because of something that's happened - or hasn't. One day he called me in great delight because he'd smacked his then-room-mate, a very unpleasant gentleman known for beating other residents up. I told him "well, good for you", whereupon he told me, with great glee, that he'd smacked him "three times." I explained that his could get him kicked out of the residence, so he promised not to do it again. Three days later, he called me in tears, to tell me that the room-mate had died, and he felt he'd killed him. That took some sorting out!
When I'm not taking phone calls, I'm getting stuff he needs, books from the library, toothpaste, kleenex, goodies, etc. and trying to sort out taxes, pensions, stuff like that. Probably, from where you sit, it doesn't sound like much, but because the only grocery store is a 20-minute hobble for me, one way, it can be quite a chore. He comes here on Thursdays and Sundays, and I take him to all of his medical/dental, whatever appointments.
Wherever I go, I take my cell phone, just in case. And I also sleep with it at night. I'm terrified if I receive a call from the home. Mostly it's routine stuff, but he does have a habit of falling out of bed, usually on to his head. He gets out of bed by himself, using a pole at the side. I refer to this as Karl's pole dancing! I've even offered to sell tickets!
This probably sounds like a piece of cake to those of you struggling at home. But it does mean that, at least during the day,, I can't really do much for myself and, by the evening, I'm really exhausted. Dishes stay in the sink, the bed goes unmade, sometimes for days, and meals are just a rumour! I told one of Karl's daughter that I feel I'm his upaid care-giver, on-call 365 days a year, and that I needed help. Her response: "You're simply fulfilling your marriage vows."
I've lived like this for three years, with no help from anyone. No family. No friends willing to pitch in. This is why I finally decided to take on social services, and also why I felt so glad to stumble on this site. There are days and weeks when I don't talk to anyone except neighbours, when I'm in the corridor. The isolation has been, at times, totally overwhelming. I'd love to do some volunteer work, perhaps on a help line, but until i see how the new regime works out, can't even contemplate it.
I have a double-fractured femur, which has never healed properly, osteoporosis. osteoarthritis. peripheral neuropathy crawling up my legs - even though I'm not diabetic, and, as I've just disovered, something called brittle bone disease - which apparently has a large genetic component. I walk most of the time with a cane and, sometimes, much to my disgust, use a walker. the latter is definitely NOT in keeping with my image. What's left of it! I have also struggled all my life with clinical depression.
All this is NOT how I saw my life ending. Karl and I travelled together, skiied together, hiked, played tennis. swam and moved to downtown TO just so we could be within walking district of theatre, concerts, movies, restaurants, etc. Hah! We also both had our own little companies and I taught at community college, something I was truly passionate about.
Sorry, as usual, i've gone on and on. I'm so used to NOT talking about what's happening with us, that I'm struggling to find a balance, now that I'm aware of people struggling in situations similar to and, in many cases, much worse, than the one I face.
Please forgive the whine. I'd so much rather have wine!
Oldbat