Old 07-16-2013, 12:29 PM #1 (permalink)
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Default nursing home vs. home care?

We are struggling with knowing what is best for our PALS. I have off during the summer since I'm a teacher and have been able to stay home and take care of my MIL, with help from her sister who comes and stays. But when September comes, this just won't be possible. We know at some point we just aren't going to be able to provide her the care that she will need. Even now I sometimes feel like I'm not giving her all that she needs. I'm sure many of you out there have struggled with this decision or come up with creative solutions that allowed you keep your PALS at home till the end? Any suggestions?
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Old 07-16-2013, 12:53 PM #2 (permalink)
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Default Re: nursing home vs. home care?

My mom went into a nursing home a month ago. As a result of neglect (they did not chart her bowel movements, she did not have a BM for two weeks. She became so impacted that she could not urinate) she went to the hospital for a week. We tried a different nursing home. It was awful. They just don't know what goes into caring for a PALS. She is home now. She received Medicaid but they only provide 5.5 hours of care a day. She also has Hospice, but they do not provide respite. She lives in a retirement center. We cannot afford private pay. However, between the day workers, my staying with her at night, my best friend and sister-in-lay spending nights, and her friends there at the center nearby and checking on her, we do what we can.
If you can figure out a way to keep her in the home, do it. I know it seems impossible and it may be. But when she was in the nursing home I was running back and forth, feeling guilty and concerned, having meetings with the staff, etc. more than when she was at home. Plus...she was depressed.
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Old 07-17-2013, 10:48 PM #3 (permalink)
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Default Re: nursing home vs. home care?

thanks! We met with our Hospice Social Worker this morning and it appears that my mother in law doesn't qualify for Medicaid. We had been told a week ago that she would qualify and then she could potentially move to a nursing home when the time came. However this isn't the case. So we've decided that we'll be keeping her home until it is physically impossible to do so. We will now start the process of finding people who will be able to stay with her while we are work and then at night when I go back to work. I feel pretty guilty and selfish about not just helping her myself but at this point, I would go crazy without some help. I do feel better about the decision that we made today about keeping her home. I can't believe what a horrible experience your PALS had in the nursing homes! That is awful-
Shannon
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Old 07-31-2013, 09:08 AM #4 (permalink)
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Default Re: nursing home vs. home care?

Dear Shannon, We live just down the 90 from you in Fredonia. I have been taking care of my husband at home for 6 years and feel like I've done so much research I could write a book on being a home ALS caregiver. I suppose most of us could! Anyway, if you'd like to get together and meet that would be great. I have been searching for a support group in our area, but the closest one is Buffalo and I can't get up there. We have three aides that take care of Tom when I teach and I can give you lots of help on how to find good ones and how to interview them as well as ideas on how to make home care very doable. I wish you'd known about the Dunkirk/Fredonia ALS Walk that was held two weeks ago in honor of my husband and a few other locals who have ALS. We could have met up then. We raised over $16,000 and the ALS Association is still astonished that such a small area could raise so much $$$. Diane
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Old 07-31-2013, 09:25 AM #5 (permalink)
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Default Re: nursing home vs. home care?

Hi Dianne,
I actually work in Fredonia at the middle school! Maybe once the school year starts we could meet up? We are currently in the process of hiring people to stay with my mother in law while I'm at school. I think we found some good ones. However, I would love to talk with you and I could probably learn a lot!
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Old 07-31-2013, 02:25 PM #6 (permalink)
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Default Re: nursing home vs. home care?

That is an amazing coincidence! I teach at Fredonia State. I would love to meet you in the fall. Diane
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Old 07-31-2013, 11:59 PM #7 (permalink)
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Default Re: nursing home vs. home care?

That is amazing!
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Old 08-01-2013, 09:03 AM #8 (permalink)
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Default Re: nursing home vs. home care?

Wow! Well I definitely want to meet in September. I haven't gone to any support group meetings, so it might be nice to speak with people in person about things. Not that this forum isn't wonderful...I've learned so much from it and have felt like I'm not alone with this
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