Elder Care: Helping Parents Make the Big Move

People have been emailing me re. the launching of Mimi's Place with support, saying it's about time we all had a way to get connected. Thank you! Some of those emails contained news that the sender was right at the point of having to move their parent(s) out of their home.

Reaching the point of Making the Big Move is a big deal. It doesn't matter whether your folks are still in their old home and are moving to independent living, or if they're already in that sort of residence and need to move to one with a higher level of care. This is a fraught time, both for you and for your parents.

Ten years ago, when my mother was a sprightly 81, my sister and I helped her from her home near New York City to an independent living residence in San Diego. A year ago she was diagnosed with dementia. Recently we decided it was time to move her to assisted living at a new residence, also in San Diego. I found a huge qualitative difference between the two moves which I'd like to dig into a bit.

I would venture that many of us have parents, now aged and perhaps not too healthy and with it, who have lived for decades in the same community. From your parent's perspective this sort of move is the aging process made visible, with the diminishing of independence that goes with it. There's a finality to it. It's a pulling up of roots of the most excruciating kind.

Yet, if the move is done at the right time of life, our parents can and do build a new community of support. Though the new community may not be as fulfilling as the old, there's still a sense of possibilities, albeit perhaps diminished ones. For us, it's heartening to see our parents make new friends and find new pleasures. As we observe our parents decline, it's reassuring when we see that they can still manage the rudiments of a full life by themselves. The point at which we need to take over is postponed, and that's a relief.

However, when the move in question is from independent to assisted living, it's a whole 'nother story. I'd like to deconstruct some of what I sense is going on, from my own experience. In our era, I'd venture that 99% of elderly people know what assisted living represents: in so many words, it's where they go to die. From what I've heard and observed, our elderly parents experience a strong mix of emotions about such a move:

• Relief that there will be more assistance for the tasks of daily living.
• Dismay at the further visible loss of the ability to manage independently.
• Fear of the unknowns about the end of their life.
• Anxiety about a new place where they may not know anyone.
• Confusion, if dementia is present, coming from a dislocation of their routine.

And that's just for starters....

For us, it's equally wrenching. Typically, as their caregivers, the decision to move a parent to assisted living is one that we ourselves have consciously initiated. Some parents understand the need for the move and go along with it. That makes it easier for us; it becomes a team effort, everyone agrees on the goal and we work together. Others resist, or simply are no longer able to understand the compelling reasons for the move. That makes it hard. Why? Apart from the guilt trips and such that we've all read about, I think there's more going on.

Basically, we are acting (or reacting) either to a medical emergency or to a chronic mental or physical issue which can no longer be managed at home. The move to a place with more care implies we know in what direction, at what speed and in what ways our parents will next deteriorate. But we don't know this.

All we can say for certain is that we know what they need (and what we need for them to have) right now. If we're honest about it, the rest is conjecture. So here we are, being firm and projecting all kinds of determination and confidence about a solution (The Big Move) that we can't control and which we can't even say with certainty is going to be appropriate a few months down the road.

Talk about a toxic mix!! So how to get through this?

1. First and foremost, give yourself and your siblings a huge pat on the back for the tremendous job you've accomplished. Do this often. Your parents, who in the past would have blessed you with their approval may not be able to do so now. You must acknowledge for yourself that you're doing a terrific job, the best that anyone in your situation could do.
2. Equally important, spend some time learning to put yourself in your parents' shoes. Use your imagination to try to experience their world view: feeling frail, aching all over, can't remember things and they know it but can't do anything about it, realizing that all their efforts to portray independence haven't fooled you, scared, unsure. No wonder they may be resistant and just plain unpleasant.
3. Remind yourself that your parents are not angry at you, they're upset at their situation. You just happen to be the physical representation of that. Let them spew, try not to engage in explanations and rationalizations that lead to hotter tempers. And try to redirect the conversation to something other than the move, to whatever topics your parents more happily talk about.
4. Keep your objective firmly in focus. Remind yourself that your decision to move your parents is well-reasoned. While you might not be able to accomplish it in the timeframe you initially imagined, it will happen and your parents will adjust.

What's your take on this? Has your experience been the same as mine?

Elder Care: Mimi's Place Introduction

Thank you for taking a moment out of your busy day to read this. If you've even gone so far as to open this link, I'm honored. First off, I want to make sure I'm not going to waste your time if, in fact, what I'm writing about here is of no interest to you. So, with this first post, I simply want to explain what nudged me to start this blog and how I view its purpose. I'm hoping the way I feel about this is going to strike a chord with you, too.

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.

This was our diving platform, and if you watched the Olympics at all these past couple of week, I'll liken our situation to being on the highest platform, except you don't know how to dive. All you know is that you've got to jump off the platform after which you'll hit the water below, where you'll start swimming for dear life.

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.