GiraffeGirl
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GiraffeGirl, November 6,  2020  5:39pm EST

Second generation caregiver dealing with first generation strife

Hello everyone this is my first post. I guess I'm writing in hopes that someone here has had a similar experience, or maybe I just need to vent. Either way, here goes...

My grandma had a hemmoragic stroke in late-April of this year. After three weeks in a rehab hospital and another five or so weeks at a nursing and rehab facility my father, his sister and two brothers decided to bring her home. Their decision was largely based on the opinion of the nursing and rehiab facility's doctor that my grandma was probably nearing the end of her life. She returned home in late-June.

Since then, my grandma's condition has improved significantly. Obviously, she is still dealing with the effects of the stroke -- left side hemipeligia, vision loss in her left eye, left-side neglect, and bouts of depression. Since she came home, two of my father's siblings and I have been my grandma's primary caregivers. Thiat was going smoothly until a few weeks ago.

During some of my grandma's most severe bouts of depression, she has talked about wishing to die and said that she should go to a nursing home so she wouldn't be a burden anymore, often expressing these thoughts one after another. When she is not so severely depressed, she says that she wants to remain at home.

My father's three siblings (including a brother who has not been involved in my grandma's care) have apparently taken my grandma's most depressed thoughts as an expression of her actual wish to be placed in nursing home. My father disagrees and wants my grandma to make this decision when she's not depressed.

I'm caught in the middle. As far as my aunt and uncles are concerned, I shouldn't even be involved in the conversation unless I'm acting as a surrogate for my father. I'm the only grandchild who has had any significant involvement in my grandma's care (a cousin and her daughter each stayed a few hours on two seperate days, but that's it).

The agency that has been providing physical and occupational therapy services has assigned my grandma a social worker. While she was visiting yesterday, my grandma told her that she wants to stay at home. Shortly after the social worker left, the aunt and uncle that I've been sharing caregiving responsibilities with began pressuring my grandma about going to one specific nursing home while there are beds available there. They had my grandma so upset that even an hour after they left, her blood pressure was too high for her occupational therapist to do exercises with her.

I fear that things are getting out of hand. My father and his sister (who share power of attorney) are barely speaking to each other -- they probably wouldn't be if I have refused to be their go-between. My aunt has already contacted my grandma's primary care doctor about beginning the paperwork for nursing home admission. I'm beginning to worry that the new care schedule she wants to try could be a ploy to get me out of the house so she can have my grandma moved to a nursing home when no one who disagrees is around to object.

3 Replies
  • AHAKellie
    AHAKellie, November 8,  2020  2:16pm EST

    I'm so sorry you've been put in this position. It's difficult when families don't agree on how to care for a loved one, but it sounds like your grandma is fortunate to have you and your dad really listening to her and making thoughtful decisions. Others may have been through similar experiences and have suggestions to share; in the meantime, perhaps our caregiver guide and resources or Stroke Family Warmline (888-4-STROKE or 888-478-7653 Monday-Friday: 8AM-5PM CST) may help. 

    Best,
    Kellie

     

  • GiraffeGirl
    GiraffeGirl, November 8,  2020  7:24pm EST

    Update: My aunt and uncles are no longer planning to send my grandma to a nursing home!

    I'm not sure what changed. I think my father's siblings may have realized that he wasn't going to budge and didn't want to take the risk escalating things. I do know that this afternoon, while my mother and I took my grandma on a Sunday outing, my father and his oldest brother had a serious talk about some of the unpleasant realities of nursing home care that we learned about with my maternal grandmother.

    The only catch is that my aunt will be cutting back significantly on the amount of time she spends caring for my grandma (I cant help but wonder if this conflict could have been avoided if she'd taken on less from the start). Since my dad was the one who vehemently opposed sending my grandma to a nursing home, his siblings expect us, my parents and I, to take on the vast majority of caregiving responsibility -- around 96 hours/week. However, there are three of us, and we're already researching home care agencies help lighten the load. Additionally, my grandma's occupational therapist suggested looking into respite care programs to prevent across-the-board burnout.

    I still have a lot of questions I'd like to ask if others here are caregivers for a grandparent, but that might be more appropriate for a separate thread.

  • JKViggiano
    JKViggiano, November 10,  2020  6:17pm EST

    Hi GiraffeGirl. I am happy your family is figuring things out AND still talking to each other. I have 2 thoughts:

    1. It seems that 6-7 months post-stroke is a big milestone for many people. Maybe it's because the stroke environment isn't new anymore. Maybe it's because caring for a survivor suddenly gets very real. Maybe it is the realization that this is going to go on for some time. Maybe the tedium is setting in. Maybe it's all of that and more. Whatever it is, it sounds like your family is right on track. 

    2. No decision is permanent. Try the home care and see how it goes. If you all don't like it, try something else. Make adjustments along the way.

    You all love your grandmother and you all want what's best for her. You will find the solutions.  Good luck.

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