The Caregiving Experience: John's Story

John Grosshandler’s mother had a simple request: she wanted to remain in her own home until she died. But John (a Chicago resident) and his three brothers knew that this would not be easy.

Not only had their mother suffered a stroke more than two years ago which resulted in her being bedridden, she also has progressive dementia which meant she needed 24-hour care. Here is John’s story:

WHN: What did you learn in the course of retaining caregivers for your mother?

John: I’ve learned a lot as this is the first time I’ve been faced with the need to arrange home care for anyone. I had phone interviews with a number of prospective agencies, and my call with Shelly Sun (owner of BrightStar) was night and day better than the others. I felt like I was dealing with someone truly interested in the well being of both the patient and family. In addition, she had insurance expertise that was very helpful.

WHN: Are there aspects of the hiring process or the ongoing care that you wish you had realized sooner or known about beforehand?

John: The one thing that would have been good to know in advance is that it’s quite an investment to have 24-hour care, and pre-planning for that possibility is important. Although we had long term care insurance, it still left a big amount to be covered by the four of us, but it’s the least we can do for given what a committed mother and wife she’s been.

WHN: In retrospect, do you feel you and your brothers made the right choice in respecting your mother’s wishes? Why or why not?

John: My Mom (and Dad) were very clear that they didn’t’ want to ever go to a nursing home. It’s very gratifying to have her in the house she’s been in for 45 years and where she raised her family. Given she has dementia, it’s that much more important for her to have familiar surroundings. Her local proximity also makes it much easier for us to visit. And the grandkids are much happier visiting her at her home than in a facility.
I think many folks would prefer to have their mother or father spend their last days in their home and we were just fortunate to have the means to respect those wishes. Most folks don’t, and a nursing home can be okay as long as there are lots of visits from loved ones.

WHN: What are the hardest aspects of fulfilling your mother’s wish?

John: Fulfilling her wish is a joy… the hard part is seeing her in this disabled state. But she knows she’s surrounded by loved ones, has family visiting her all the time, along with piano players and more, so we’re making the best of a bad situation.

WHN: What were the positive aspects in this process?

John: There have been many positives intertwined with a very sad and unfortunate situation. My brothers and I were very close beforehand, so that hasn’t changed.
What has is our awareness of the value of health and not to take it for granted, and to make the best of a bad situation. I’ll also say that the daughter-in-laws have really gone above and beyond in taking leadership roles in my mom’s care and affairs, and given it’s just their mother-in-law, it says a lot about them and we’re very thankful.

WHN: What three tips, recommendations or insights can you offer to someone who is facing a similar situation?

John: First, get long term care insurance before you need it. Make sure it provides the option to have care in the home if that’s important for you. Second, have your parents fill out a Healthcare Power of Attorney and related legal documents stating under what circumstances they want to be revived or not.
Lastly, understand that even good agencies can have below-average caregivers. Be aware of the caregiver’s approach to your loved one, including unannounced visits, etc. You can normally tell the good ones from the few bad apples just from talking with them and hearing how they talk about your loved one.

Updated 5/2009