Well I have been burned out for a while as I have been the SOLE...n I mean SOLE (no family and new state) caregiver for my mom for 8 years... What I want to say today has to do with when I do TRY to talk to friends about how hard emotionally this is and how desperate I am for a break two things happen:
1. The typical response is: Oh i know excatly what u mean, my kids drain me with their shenanigins, etc.... Then I have to point out but they are kids being kids growing and learning, bringing joy n happiness into your life....Imagine the opposite, There is no joy in the decline of your loved one...I am slowly being tortured by watching my Mother dissintergrate in front of me, and there is nothing I can do to help her....besides doing the best I can to care for her. My only Joy is that I am there for her but it is double edged cuz I gave up everything in my life to do that...can't work or socialize, etc....
2. They offer to help.....I have been told on several occasions "would love to help give me a break, just let them know and they will take mom for a day" But everytime I am in need, they back out! I did actually do it once and it turned into a nitemare....they were calling me couple hours in saying had to come get her cuz something came up and they gotta go, was total BS...if u knew the details, Stressed me out so bad, had to cancel all my plans n go get her! So I haven't tried again!
Thanks for the vent!!!
"What are Medicaid Waivers? Medicaid pays for long term care services in nursing homes. For nursing home qualified persons that choose to live at home or in a residential community, Medicaid will pay for those services if they can be obtained at a lower cost. These are called Home and Community Based Services, Waiver Funded Services, Medicaid Waivers or simply Waivers."
I think it would be worth talking to a Social Services needs assessment worker about what benefits would be available if Mom went on Medicaid and DIDN'T go directly into a nursing home.
Juju I would find a support group in your area. You have come to the right place on here because these people are awesome! Keep venting because it helps you out and helps us out so we don't feel so alone either. Praying for you JuJu!
If your family members are unwilling to help with the tasks, ask them to contribute financially and show them how the money is spent. My mom use to send an out-of-pocket email to our family members and close friends on a monthly basis on what she was spending for grandpa. Eventually, family members started contributing financially due to guilt.
One thing that we did that was very successful was to create a list of people who can help for certain tasks or activities. We created an actionable 'to-do list' that helped us with many tasks. So, whenever someone would ask "What can I do?", we would have them pick something from the list. Some examples are
1. Janet will help with housecleaning on Wednesday
2. Bill will do grocery shopping on Friday
3. Mary will take grandpa to church on Sunday
As mentioned by other posters, links to organizations that can help you form that network to share the care.
of my mother's healthcare decisions (all not to keen on all of them) but I set my boundaries, too. Its a job and he choose to be in control, not me.
I hate it when you run into someone you know... they mean well... "how are your parents?" I know they don't mean harm, but I just say, "about the same" because I know they don't want to hear how they REALLY are.... and to really get it they would have to LIVE her for a month... only then would they start to get it. I have siblings, but they DON'T get it... and they hate me for this???
I completely get what you are saying. I am afraid of what happens when this is done. My siblings won't help me get onto MY feet. I have lost my house, job, touch with reality!! I have my car. I don't know where I will go, or what I will do. I have put everything on hold to care for my parents. I thank God that I can trust him to take care of me, cause no one else will.