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/