Elder Care : When is the right time to move?

There was an interesting comment yesterday on my post Learning to Speak Up. It broached the quandary many of us experience in determining when it's the right time to move an aging parent from their home to assisted living. On the one hand, you have a parent who is clearly still able to manage their life pretty much on their own. On the other hand, that same parent is showing signs of cognitive loss which you expect will eventually increase. You know at some point you'll no longer be at ease that they can still manage safely and well by themselves.

The question is: As their caregiver or care manager, how do you know when it's the right time for them to move?

Loss of cognitive functioning isn't predictable in its pace. You know it's happening, but no one can say how fast a parent's abilities will fade or fail. The not knowing makes it difficult to plan in concrete when a move should be done. What you can see is that your parent is doing OK right now. And you expect that they'll be able to continue doing OK for awhile. But you don't know how long "awhile" will be, and you don't know what part of your parent's cognitive functioning will fade next. You feel like you're in a holding pattern. You know you're going to come in for a rough landing at some point, but in the meantime, you're hanging around circling. What can you do to be proactive?


In a separate post in August, Making the Big Move, I addressed specific issues related to moving one's parents from their own home to assisted living, so I won't repeat that here. There's lots that can be accomplished pending "the big move" which will give you a great feeling of comfort and control. Here are some suggestions:
1. Find the assisted living facility that's best for you and your parents. This takes time and is a great thing to be doing if you know that eventually your parent(s) will have to move to such a place. You want to get as well-rounded a sense of the offerings in your area as possible and end up with your first choice ready to go when you need it.

• Visit as many assisted living places as you can, even some that are out of the way.
• Investigate which ones are close to your preferred hospital, and to activities your parent may enjoy.
• Look at their actual units, both ones that are larger than you think you'd take and those that seem smaller. You'll be surprised at how different each unit looks in real life than on a printed floor plan.
• Meet with their Executive Director and their Directors of Nursing and of Activities.
• Eat a meal at each place, preferrably in the company of some residents.
• Inspect their Alzheimer's or Skilled Nursing units, if they have one.
• Ask around with doctors you know to see if any facility has a better or worse reputation than others.
• Talk to their references.
• Find out their wait list policy. Some places will keep you in your wait list priority spot indefinitely and allow you first right of refusal on each new unit that comes up.

2. Get paper work in order. This may mean putting in place a broad enough power of attorney so that you can move your parent without their say so if the need arises. It also may necessitate a clause that defines by what means your parent is considered to no longer be competent to manage their affairs. It's good to have an attorney assist with this.
3. Keep talking with your parent about the issue of moving. There are pros and cons worth airing on both sides. This is a tough decision for everyone. It's sensible to allow time for the idea and its ramifications to sink in.
4. If possible, have a neuropsych evaluation done of your parent cognitive functioning. This should be more extensive and detailed than an internist's evaluation and may give you a clearer understanding of your parent's condition.
5. If possible, bring your parent to visit a small selection of the assisted living facilities you've found. For some parents, the following strategy has worked well: First show them a facilityyou know they won't like, perhaps one that's even a little crummy. The two of you can then agree that that place isn't suitable for them, which puts you on the same footing. Next, take them to the facility you prefer, which will be in direct contrast to the one they just saw. You just may hear "Yes, I could live here!"

Is this strategy manipulative? Yes. But it's done to ease the strain of making a decision and to put your parent in a positive frame of mind, both of which ultimately make the move so much easier.

Last year, when my sister and I were struggling with a similar situation, I was given an invaluable piece of advice: don't wait until you have a crisis on your hands. So, my final suggestion is be willing to take control of the timing of the move. Don't wait to get a call from neighbors saying your father has fallen and is in the hospital, or that your mother has gotten lost while driving and couldn't find her way home for two hours. Moving your parent to assisted living actually will go far better for them if they are in good health, reasonable spirits and still able to learn new routines.

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?