I am new to this board, but am so grateful I stumbled upon it. My father has been living with us for the past 11 years. I am an only child. My father broke his hip in April and was released from rehab on June 14. His dementia has worsened since his surgery which is not uncommon as the anesthesia can really do a number on the brain.
My husband requested FMLA from his workplace. He has been employed there for 27 years. HR acted as if he was trying to put something over on them. There is no pay for FMLA just guarantees that your current position will not be filled. My biggest concern is that something may happen to me and then what? Frustrated and worried by the entire situation. I think the law should be changed because more times than not our spouses assist with care giving.
Anybody else here in the same boat. I don't know if we could start a petition or take some other action, but I personally feel it is unfair for the law to currently exclude inlaws. Any responses would be appreciated. Thanks, Kim
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I also found myself out of luck, when I offered to help my aging mother by taking my disabled brother from the family home, and working to teach him how to live in the community, without chronic risks, disruptions, dropouts, seizures, and constant risk of having his belligerence interpreted by community, as a need for him to be locked up for life.
As I made time to help him, seek services, make sure he could connect to them, seek residences that were safe and guide his learning to live as a young adult in the world - I encountered countless obstacles that the typical descriptions of services never mentioned, for most services are designed to take place within their own facilities, supports in the community are temporary, poorly planned and understood. Long story meant that when I took care of this brother's risks and needs during this young adult disabled time of his life, I myself had access to no supports - those were only set up for parents, not "a sister". In addition, I encountered prejudice from professionals (you are too emotionally enmeshed; you won't let your brother live on his own and make his own mistakes - for nobody else was involved steadily enough to notice that his mistakes would be life changing or fatal, even from small errors that he had never learned to notice.
Or, once I was involved over time and learned because I was curious and because I found it sad that so many places had so little time or stable people involved to actually track his behavior and interests, and help him grow, while also teaching him to communicate more realistically in ways people could hear: "make a list before the care meeting. list 4 things you like about this program, and 4 things you wish were handled differently.
Because no plans consider a sister as an officially responsible party, staff always went home after work hours and after any incidents or medical issues etc, I was the one to hold things together. Yet there was no program to give me any recognition, or even counseling and assistance. I sometimes joined programs for parents of disabled, but often found myself feeling different, for the service system recognized how difficult the responsibility was for them, but because the definition of "sister" was not to be the one responsible, I would sit there feeling left out or jealous, hearing so many people concerned about the parents, or parents relating to each other.
There is also no planning to deal with caregivers who are involved across distance, even though it is a major challenge to take time from work, plan a trip that requires intense involvement, wrap up goals in progress at home and arrange for pet or child care, in order to get on the road and travel. When arriving, one finds that local service program staff are generally running to keep up with the goals targeted by the institution, they run right past the tired, worried family member who arrives on site. Such family don't need much help, but their efforts should not be so alone, without the connections that local people can build, when not on a brief schedule of a visit. I found they would leave my brother to himself or to me, and disappear.
It was a more welcoming experience to arrive as a visitor, to community settings, without that sharp division maintained by rushing professionals and worried and helpful family.
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