The Minefield of Eldercare
18 August 2010
Recently a friend of mine ran into a hitch in the ongoing care of her elderly mother. It seems she, herself, was running out of steam in terms of driving back and forth to her mother’s small town and dealing with the team of caregivers. In an effort to look for that elusive thing we call “there just HAS to be a better way,” she discovered they were in violation of a whole raft of rules and regulations, not to mention underinsured.
In typical fashion, my friend began the process of research. Now when I say this, I am not being critical. We all have our quirks and hers is to find expert after expert after expert who often A) tell her what she already knows, B) scare the hell out of her, C) give her cover for her own ideas, or D) validate her feelings. But she can also spend a lot of time spinning her wheels looking for that elusive expert who will tell her what she wants to hear. Item C is often the reason. She doesn’t want to take credit for being the smart person she is because she fears the outcome. That outcome is generally resistance from her siblings.
She finally discovered a dandy assisted living center that offers “respite care.” After a whole lotta emotional convolutions, lukewarm support from the sibs, who live waaaaay out of town, she got Mama installed in the place with a 70 year old caregiver available to run Mama to the salon, church and a few other social activities.
Mama is 85 and had suffered a few strokes that would have sent a lesser woman off to the cemetery. She is a bit wobbly, but she can manage, with help. Mama is also comfortably well-off, so staying at home with caregivers was an option for her. However, the issue now is that in order to bring her situation in compliance with the laws of the land, and to protect her by means of increased liability insurance, Mama’s nest egg is going to be depleted long before her body runs out of steam. What to do?
This is the problem many of my peers have been facing and for many it is uncharted territory, fraught with traps and misery. Once upon a time, our elders suffered debilitating strokes, massive heart attacks or cancer and they died within a short period of time. Those who didn’t often were taken care of in the homes of their children. But those were the days when there was a stay-at-home parent, household help and other support systems of that nature. In today’s society, we don’t see the spinster aunt taking care of the elderly parent in the family home. Nor do we see the set up we all read about in Tomi DePaola’s book, Nana Upstairs, Nana Downstairs. We now have rules and regulations regarding paying into Social Security, etc. etc. It’s complicated and it’s not an intuitive kind of thing. You have to know what to do. Hence the numbers of social workers and other “experts” who are out there to help us thread our way through the maze.
The cost of respite care, assisted living, nursing home care, retirement centers and so on is tremendous. And some of us discover, much to our shock and dismay, that our elder has done something really, really risky like taking out a reverse mortgage without the knowledge of the kids. Rossiferous@blogspot.com has a piece about saving a client from that trap. (Lucky for that client!) Elderly people who were able to sell their homes during the housing bubble in order to pay the upfront fees in the nicer retirement centers are the only ones who are in the catbird seat. Most of the elderly are not that fortunate.
And so it has fallen to my friend to try to organize her siblings. Her mother has lived far longer than any of them reasonably expected, and because her general health is excellent, there is no reason to believe she won’t last another five or so years as her body winds down. But my friend has been dealing with this for over ten years and she is plumb tuckered. The siblings live far away and don’t have a clue as to the pain in the neck it is to try to keep a team of decent caregivers in place. The news that they would soon have to have taxes and such deducted from their paychecks sent a few over the edge and they quit. It seems they were more than willing to work for unreported income.
In our own situation, after a revolving door of live-in caregivers, we lucked into one who had come in as a substitute caregiver. She had the bright idea to manage our dad’s care with a team of local ladies, and she volunteered to be the leader. She was worth her weight in gold. It was not without hiccups, to be sure, but there was nothing so difficult that two college educated daughters couldn’t figure out. One involved sending a letter informing the parental unit’s girlfriend that she needed to back off or we’d take legal action against her. It was a bluff, but it worked. I mean to tell you, having a shrieking virago bitching that the caregivers hired to provide assistance in the home - light housekeeping, cooking, personal care, companionship, errands, laundry - needed to be outside running the lawnmower or the weed whacker really got on our nerves as caregiver after caregiver quit. We had to do something.
Eventually it came together and it worked because my sibling knew the tax rules and so on. My friend’s family for some reason never figured on any of this, so the recent revelations were a shock to all concerned. I have to ask how many other families are in this boat and what do they do to bail themselves out?
For my friend, having her mother in the assisted living center has been a huge source of relief. She would like this to be a permanent situation, but Mama has to be convinced it is in her best interests. This means she has to have the complete picture laid out before her so she can make a decision. She has all her faculties, so, yes, she will be the one who decides. The siblings, however don’t have the same sense of urgency as my friend, and their fact-finding assignments haven’t been completed on time. Her emails to them have fallen on deaf eyes. I read them. I see why. She fails to be direct in telling them what she wants. She can’t be direct. She cannot be succinct. She does not have it in her to say what she feels: I am worn out, I have had enough, I never thought this gig would drag on this long and I want out.
And so after a lot of “miscommunication” in which she was positive I wasn’t hearing her, I forced her to participate in a simple exercise of -her favorite word - prioritizing. Then I composed a to-the-point piece for her to send to the siblings. It assigned them their tasks and it gave them deadlines with specific, businesslike reasons for those deadlines. All pointed back to one thing: she wants out. It’s what she did next that sent me over the edge. After freaking out because she needed to send this right away, she slammed her computer shut and headed down the road, saying she didn’t have time to read through what I had written and to process it.
Now I am no fool. I know she was cringing because I had been -gasp- direct. I knew right then she had absolutely no intention of sending it and that I had wasted an afternoon trying to help her make herself understood to her two no-nonsense siblings. I knew she was having trouble taking responsibility for her need to get out from under the whole business, and by golly there is nothing wrong with saying so. It ain’t like she hasn’t pulled her time with this. But she is single, on her own, and due to her inability to stay focused on one thing at a time and a propensity for “multi-tasking” where she gets not one single thing brought to completion, her entire life has been in disarray and she can’t stand the mess anymore. Imagine being saddled with attention deficit disorder and being obsessive compulsive. Get the picture? She cannot see that she has done a good job so far and she cannot see that she is within her rights to say to her mother, “Mom, I love you, but I have to have a break. You are going broke under the current system and I can’t manage it any more. You need to be in assisted living for our peace of mind for your safety and well-being. Being at home isn’t working any more. I can’t get help who will agree to have taxes deducted from their paychecks and we’ve run out of alternatives. I’m sorry about this, but this is the way it will have to be.”
What she did was get on that infernal earpiece thing that makes her look like she’s talking to herself and keeps her from focusing on her driving on a very dangerous piece of Virginia highway. She called one of her experts. Then she called me back and told me what the expert said. It was exactly what I had told her. She had to get permission to send what will likely be a watered down message to the siblings. And it will certainly become a watered down message that will revert to being indirect and never will tell them what she is within her rights to say out loud.
Furthermore, she has arranged for an expert who will deliver this to her mother, but it still involves her siblings doing their part to assemble all the facts and figures of the various alternatives so her mom can see it in black and white and to have the message delivered by her financial adviser. No one wants to be the bad guy.
My point in all this is that it’s business. There is nothing more littered with hidden landmines than family business. And there is nothing more emotionally charged than the care of our elderly within that structure. With our changing landscape of scattered families, we no longer have the same options and we no longer really want those options. Parents want to hang onto their independence, children struggle to accommodate that in order to preserve their parents’ dignity, and in the end, there has to be a safety valve or the whole thing will blow up. Without carefully put together estate plans in which we look to our own futures, we Boomers are setting ourselves up for even bigger fights.
See an elderlaw specialist today. Get your own affairs in order. Don’t be an ass. Your kids may deserve a little grief, but not this kind of nonsense.