Saturday, August 30, 2008

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?

2 comments:

Wanda said...

Any advice on parents with different needs?
Dad has physical disabilities and needs and wants to move.
Mum has early dementia and is angry about moving. She needs to move as she can't cope with herself or Dad any more.
I've found a great place. Dad loves it. Mum's blaming me for betraying her. So sad. So unlike her.
Has anyone had any experience of this and has any advice on how to make it easier all round?

Dina said...

Hi Wanda,
The situation you face is, actually, not uncommon. It makes perfect sense that two people, probably of different ages, would show different signs of aging and dependence. Here are a few suggestions:
1. Talk with the director of the facility to which you want your parents to move. Often the residence itself will have programs designed to help couples get over the objections of the one who doesn't want to move.
2. I would bet that, inside, your mother's simply frightened out of her wits. About what? About her mind slipping. About revealing that she can't cope with herself or your Dad. About losing contact with your Dad if they're living somewhere where they might be separated.
3. Re. that last sentence: assisted living facilities often have couples where one has dementia and the other doesn't. The way the good ones handle this is for the couples to be able to spend their entire day together, but just sleep apart. Since your mother has early dementia, I'd bet your parents would live together for a long time, until the point where your mother's dementia was so advanced that she needed different care.
4. If possible, validate your mother's love for your father. Talk to her about how her love may now best be shown by helping him relax and be comfortable with additional assistance from others. I worded this carefully because it's important for her to understand that she will still be able to take care of him, too. IF you're feeling brave, talk with your mother about whether she's afraid and what of.
5. Don't get into conversations about you betraying her. I am willing to bet that this sort of statement is a symptom of her underlying fears. She hasn't been able to express those fears, so her way of presenting her anxieties is to displace them onto you. There is no win-win in a discussion of you betraying her. You will not be able to convince her that you're not doing so, so don't even start from that premise. Again, this statement isn't a rational expression, it's an emotional "burp" so to speak. In my situation, psychologists advised me to firmly tell my mother that I would not discuss such statements with her. And then I"d offer her a different discussion. I"d say "Mom, I will talk with you about your worries about moving. Let's discuss that." So I'd turn it from a dead-end emotional rant into a constructive and supportive adult conversation. It helped.
6. Realize that you are the one who must be decisive in this situation. I've been there, so I can empathize with just how difficult this is. However, not moving your parents will ultimately be harder on you than moving them. That's because things will NOT get better if you let them stay where they are now. Things WILL get better if you move them. Your mother will get used to the new place (it takes 6-8 weeks...also not a fun time), and it will become a home to her.
7. An approach that worked supremely well for one person was to take her parents to several places that were far below the desired place in quality. After visiting those "Unsavory" places, her parents were thrilled that they could move to the "good" place.
8. This is, sadly, a difficult time for everyone. My best suggestion is that you not prolong the agonies. Make your decision to move them, forge ahead with it and you can at least feel good that you are being proactive and doing what is best for your parents. Your mother will rail against it, and it's her right to be angry, confused, upset. But she WILL get over it.