A year and a half ago, after several emergency visits to her neighborhood hospital, my mother's health and mental well-being reached a level where my sister and I felt she needed the support of round-the-clock caregivers. Was she terminal? No. Was she as independent as she had been a few months earlier when she went on a 2-week cruise by herself? No. She was somewhere in between. She also was 91 years old and who could say what would happen next. There she was in the middle of the seesaw, some days sliding toward "better" and other days decidely on the side of "worse." We never knew which way the seesaw would tilt, so, in effect, there we were with her, with the seesaw itself rather firmly in control of our lives.
As we embarked on what has proven to be a rather wild ride, we had absolutely no idea what we were doing. No idea what was needed to keep our mother as healthy, safe and independent as possible. No idea of what that magical thing called "quality of life" would now even look lilke. No idea where to look for the help we needed, nor whether we were looking for the right sort of help. No idea whether her current health would improve, stay the same or deteriorate. Therefore no idea what we even needed to plan for. What we knew was this:
- Our mother's current lifestyle set up was no longer tenable.
- Both my sister and I were highly capable, organized and well-intentioned individuals.
- We were acquainted with a few trustworthy independent caregivers.
So, that was the position we were in in May 2007. Since then it's been a crash course in elder care, with lots of ups and downs. In the process, I've learned a huge amount, not just about how to manage my mother's care, but in general. This is proven to me each time I chat with a friend who's in a situation similar to what I was in 18 months ago. The amount of wisdom, of experience, of options that I can now counsel others about astounds me. And none of it came from schools, conferences or websites. It came from hands-on, in the trenches, make mistakes and figure things out, learning.
In talking with others embarking on the dive off the high platform, I found a real desperation for information and assistance, a craving for ideas based on hands-on experience. Clearly these savvy, accomplished people had not been able to find what they're looking for on the web, just as I wasn't. When I spoke with people who'd been taking care of their parents for awhile already, I encountered a sincere yearning to talk about triumphes and mistakes with others who could actively benefit from that information. Most gratifying, each person I've talked to in the past year has had expertise on something related to the subject of caring for our elderly parents, even if they were just starting to get involved in it.
Over these past several months, with my mother in a more settled situtation, I've had a chance to reflect on what's transpired since May 2007. And here's what I've realized. There are tens (maybe hundreds) of thousands of us out there who have reached an extraordinary level of accomplishment in a field for which there is no degree and no credentials. We are absolutely expert in what we do: caring for parents. What absolutely astounds me is that, for most of us, once the need to care for our parent(s) is finished, our incredible amount of expertise will no longer have a purpose or an outlet. And boy that seems like a real shame.
So, that's the purpose of this blog. Let's get going on sharing our collective wisdom and expertise regarding the care of our parents. There are all kinds of us out there: rich, not so rich, urban, rural, middle-aged, single, married, kids of your own, too young to have to do this or old enough to wish you didn't have to. Each in your own way has done an admirable job of ensuring the care of a parent or two. Each in your own way is an expert in the field of "caring for my parents." Why not put that hard-won expertise to good use. Send it out to those who are poised on the high-dive platform about to jump. Make it available to someone in another State who might glean just the nuggest of experience that will help them avoid a pitfall that you had to stumble through alone.
This blog is titled Mimi's Place, after my mother, since it is her situation which has made me into the "expert" I am today. I called my URL Elder Experts, because I firmly believe we all are. And I firmly believe we must share our knowledge and not let it die when our parents die. There are oodles of blogs and websites that list articles, services, care facilities and the like. That's not what Mimi's Place about, though if I find something of special interest I'll share it and I hope you will, too. Rather, I've sent you the link to this blog because I believe you are the Elder Expert. It's your many vital experiences, opinions and wisdom which need to be shared with all of us.
For starters, here are some of the general topics I have in mind, each of which contains subtopics which I won't get into now. Each can spark a dialogue between people who have actually solved a problem, found a solution, or are in the middle of the morass.
- Who's watching the farm: Agencies, private caregivers, contractors, employees and figuring out what's right for you
- Room & Board: Where should Mom and/or Dad live
- Decisions, Decisions: Who's going to make them and are you prepared
- Guilt: Achieving the right outcome
- How do I know what's going on: Communication between all the parties involved in your parent's care.
- Long Term Care Insurance: do you want it; do you need it.
- Family relations: rivalry, burdens, a whole new level of love
I know there are other topics that will interest users of this blog, which I haven't thought of yet. Do you have any of your own? Add them to the list and contribute your own "papers" on subjects that are meaningful to your experience. And forgive the utterly simple format of this blog. I know there are sophisticated ways to create these things, but I'm just starting and have a lot to learn.
Please participate. What can you contribute? For starters, make the circle wider. Forward this link throughout your own network of Elder Experts, to siblings, relatives, friends, your parents, anyone whom you've talked to who is responsible for the care of a parent, or who expects to be. Let's get a conversation going around the country.
7 comments:
It's an excellent idea to provide a spot for sharing information about what is becoming a very common experience, the care of elderly parents. It will be essential for those who are responsible for a parent's wellbeing and safety, to recognize that whether you hire an outside caregiver or not, ultimately, you ARE the caregiver, and as such, will experience more stress than you can imagine. Thus, bloggers who have experienced this responsibility should be sure to include lots of suggestions about how to care for and support the ultimate caregiver - yourself.
You are exactly right about the stress. How have you managed it?
Good luck with your new blog Dina! It is a great idea, interesting, and well written.
Thank you for the positive feedback. I'll be posting frequently so do check back. Are there particular topics you'd like to see tackled?
This is a good start. There are so many topics that can be addressed.
As far as restoring dignity to a certain element, I don't think that's always possible and I think it's something you just have to live with. Trying could be quite frustrating especially as the dementia gets advanced.
Yes, there's lots of stress though and any thing to alleviate some of it is helpful.
Perhaps the way I should have phrased this is to identify an element of dignity that you can provide, rather than saying restore dignity which, for all the reasons of physical or mental illness, is now gone for good. You could do something small, such as getting a manicure for a bedridden mother who used to take pride in always being well-dressed. Even if your parent is advanced in dementia, or for other reasons can't recognize what you're doing, one of the benefits of this is acknowledging what your parent used to be, rather than always having to focus on what remains of them in the here and now. That can be a good feeling.
We had an unfortunate experience with a trusted friend hired to be our Dad's book keeper/companion. While she did some good work, she was also doing things that landed her in a lot of legal trouble.
Our Dad was always a difficult, nasty person for us. Neither of us wanted to spend much time with him, and he didn't want us involved in his business. Consequently, it wasn't until we had to activate our POA and take over, that we found the irregularities perpetrated by this trusted friend.
Our Dad was in his nineties and visually impaired during the period this person worked for him. He has just turned 99.
We now know that there are business that provide book keepers, companions, and whatever else, who are bonded. If we had known that years ago, we certainly would have chosen that route!
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