Post by mothernature on Nov 3, 2018 10:03:07 GMT -8
My spouse has been a SCI since 1985. Any other long term caregivers on here? I love him dearly. However we seem to live in crisis mode, especially the past seven years. Constant wounds, surgeries, grafts, loss of both legs, syrinx that keeps increasing his level of injuries, ruptured tricep tendon (because arms aren't meant for mobility all these years.). Isolation is deafening. I miss interacting with the world. :-[
Hello mothernature, welcome to the forum. I am sorry to hear how isolated you feel, it must be so difficult. Are there any groups you can join locally that gives you the opportunity to interact with others and give yourself a very deserved break?
mothernature, greetings. My encouragement is going to sound more like a dirge. One day when I was feeling the way you describe, I saw a young, slim woman walking past my house. Having a kitchen lightbulb burned out, and really, really needing someone to change it for me, I asked the young woman (who said she lived just up my street) if she would change my lightbulb, please. She said, yes, and that she’d be back soon. She came back about an hour later, changed my lightbulb, and chatted. Then she asked if she could have a tissue for her nose. I invited her to get one. The box was behind me (and I was in my wheelchair). She took too long, and when she again stood in front of me, touching her nose with the tissue, she didn’t seem to need it. I knew something was “off”. She left. And my one-year-old smart phone did, too.
So, this is my ‘negative re-inforcement’ story. Be careful what you wish for. . I’d thought that the young woman and I could be friends, even maybe that I might hire her as an aide. And, no, I’m not a caregiver.
My spouse has been a SCI since 1985. Any other long term caregivers on here? I love him dearly. However we seem to live in crisis mode, especially the past seven years. Constant wounds, surgeries, grafts, loss of both legs, syrinx that keeps increasing his level of injuries, ruptured tricep tendon (because arms aren't meant for mobility all these years.). Isolation is deafening. I miss interacting with the world.
Wow dear, you handle immense and never-ending responsibilities. Do try that FaceBook page even if you have to join up. This is good place to share your feeling snd you might find a few helpful hints on handling specifics. Big welcome.
I am a quad without huge health issues at the moment and independent, bu my deafness (and bladder tending) keep me socially isolated. The internet is useful.
Hi mothernature,and welcome to the forum. Sorry you feel so isolated. It can be a very lonely existence and also I think it's easy to lose the knack of interacting with others and making new friends. Also hard when sudden emergencies mean last minute changes or cancelling of arrangements made with friends. They don't always understand the pressures. My husband has needed my help for the last 6 plus years - so nothing like as long as you, but I do have some inkling of what you must be feeling. You don't say which country you are living in but if you are UK based then Carers UK might be a good place to start. It is, as the name suggests for carers of all types and has much practical advice to give - but also has a forum for interacting with other people in a similar position as yourself. Many have felt the same as you do and they have much to say on the subject and some useful experience to share. If nothing else it is a good place to start to interact with some new people who are in a similar situation. Also, having been a carer for so many years you will undoubtedly have useful knowledge to share with others too. www.carersuk.org/
Post by woosibubble on Jun 24, 2019 8:23:37 GMT -8
Hi mothernature. I’m sorry you feel so isolated. I have only been caring for my quadriplegic husband since October but, I, too am disabled and have been for eight years. I had a very active social life before my injury and felt isolated already when abandoned by friends but, I had no idea how bad it could get until my husband became completely dependent on me. I’m not allowed to be sick anymore. I’ve never been this exhausted or in this much pain in my entire life. But I’m trapped. I never signed up for this. But I also can’t walk away. I vowed in sickness and in health. And my husband took care of me for nearly eight years. But, I’m terrified. I’m already feeling now how you feel after 35 years. How am I going to do this? I’m sorry I’m taking your post and making it about me. It’s really not my intention. May I say, if you need someone to chat with, I am happy to be a someone to be a listening ear. Please feel free to message me. Perhaps if we share our woes, we can cure our isolation to a degree. Hugs 🤗 to you!
woosibubble, I appreciated your post. (“Enjoyed” your post didn’t sound right.) Whatever in your post was “about you” was the mirror image of what mothernature, wrote. Most of us on this forum have experienced the loss of friends that comes with our injury. That loss is compounded by our newly acquired inability to generate “new” friends. It’s not that we aren’t open to new friendships. It’s that there are dangers in this world of “opening ourselves up” to the wrong people. It’s not that we are “too picky” about who our new friends will be. It’s that we’d like to have some semblance of protection from further harm. My neighbor lady puts my trash out to the curb for me when she sees it’s not out there for “trash pick up day”. I thank God for the help each time. That’s a real “neighbor”. May you be so blessed for whatever needs you have.