Elder Care: Letting the Sadness Be

Anyone caring for an elderly relative/parent, knows that, as short-term memory fades, what's left are the memories of long ago. These include what are often considered to be happier times: your childhood, a family all together on holidays, your parent's youth, their siblings, their family life.

As I go through this with my own mother, I've been assuming that, through the selective subconscious, the long-term memories she would call up would all be happy ones. After all, as we go through life we often suppress difficult or unhappy occasions. And we don't discuss or necessarily even think about them later in life. I figured that long-suppressed memories would stay suppressed. Not so.

As the threads and trappings of an active life are stripped away, it allows long-ago traumas and sadness to re-emerge. My inclination when I perceive that my mother is sad, is to try to inject some levity. I want her to be less sad. I want to distract her with something pleasant. I want to fix her sadness and make it go away.

Marc Agronin, a Florida geriatric psychitrist, has written an article on this which I found extraordinarily moving. I want to present one particular paragraph verbatim, which is both revelatory and stirring in its simplicity.

"Sometimes the perpetual sadness of many older survivors is not to be healed but shared. Over time, as memories fade and the voices of lost loved ones grow quieter, all that remains is a closely guarded sadness, persisting as a substitute for the losses. Any attempt to ease this emotion may be a threat to painful but beloved remnants of memory. What some survivors seek is not medicine or therapy: it is the attentive presence of a doctor and others to serve as the next generation of witnesses."

Think of a museum curator carefully cleaning the work of a student off the painting of an Old Master. Slowly a new work appears, one with infinitely more depth and a completely different story to tell. Dr. Agronin's article appeared in the New York Times on December 23, 2008. I urge you to read it in its entirety.

Employee benefit: elder care

I read in an article recently that, according to the National Alliance for Caregiving, family members spend an average of 22 hours per week on care for their elderly relatives. Another study, published in 2002, notes that 35 percent of employees care for an elderly relative. Seven years later in 2009, that number is surely higher.

If you're caring for an aged parent in your home, or helping to manage their care nearby, you already know how much time you devote to this job. Not all of it is going to be spent before or after you come home from work. You may have to use your own sick or vacation time to take your parent to a doctor's appointment. Perhaps you need to check in on them during the day. And then there may be meals to be provided, emergencies, a whole host of demands both predictable and not, that impinge on your work day and, indirectly, on the mental clarity you can focus on your job.

There's a growing awareness among employers that elder care issues can affect their employees. Some employers are now offering backup care benefits for just these situations. Like other types of insurance benefits, backup care benefits provide highly subsidized hourly rates, and vetted caregivers, from a selected provider. For example, if you need a caregiver for a few hours here and there, the benefit might pay as much as 80% of the hourly rate, leaving you with a modest few dollars per hours to pay for the service.

Right now it is mostly very large companies that offer this benefit. But I want to publicize it here and urge you to speak to your employer about offering this benefit as an option. It's no longer uncommon to provide backup care benefits for child rearing emergencies. And it's quite possible that that one single service provider could create a program that provides backup care services both for children and for the elderly. Another option could be to find out whom else among your co-workers needs this type of backup care. If your employer can't offer you the benefit as part of insurance, a group of you could select a provider on your own and, by sheer force of numbers, negotiate a lower rate with them.

Sometimes all it takes is more people making their need for certain types of coverage known, for a change to take place. Either way, the benefit to your employer is clear: less absenteeism and better productivity from employees.

Elder Care: Communication variations

Each time I talk to my aged mother on the phone, I find myself pondering the puzzle of communicating with an elderly dementia sufferer. It's not that my mother doesn't understand what I'm saying. She understands me quite well and can respond appropriately, too. But, because of her short-term memory deficit, which is severe, this can only take us so far. For example, she'll ask me how the weather is where I live. I'll tell her and ask her how the weather is where she lives. We'll go back and forth a few times with pertinent comments on the weather. And then she'll ask me again how the weather is at my place. The same thing happens with any other line of conversation I may start. We can get two or three exchanges in and then she's already forgotten where we started. Thinking she's uncovered a new subject to talk to me about she'll revert to the original question again. And so it goes.

There's nothing wrong with these short, superficial conversations. Before dementia set in, I would talk with my mother once a week or so, and that level of contact and communication was sufficient. At that stage in her life, my mother still had outside contacts, friends and activities which provided stimulation for her. Now that dementia has shrunk her world to a very small space, I find myself struggling to determine for myself what communication means at this stage of my mother's life.

I realized recently that communication per se serves various needs. Obviously, a phone call facilitates the simple transmission of information. But there's more to it than that. There's also the strengthening of the thread that binds us across a long distance. There's the easing of loneliness during a long, quiet day. There's the proof that connections still exist. There's the stimulation to her brain that comes from the need to marshall thoughts and express ideas. And more. Looking at each of these elements independently, I've come up with a few ways to satisfy her needs, beyond the phone call.

1. Hearing a beloved human voice: I confess I don't always have something special to say to my elderly mother. And she's not always able to carry on much of a conversation. Yet I know it's meaningful for her to hear my voice. In between calls, I'll leave messages for her on her answering machine. That way she knows I'm thinking of her, even though we're not engaging in a phone chat.

2. Pet therapy: A brain with dementia is especially in need of stimulus. As I see my mother withdrawing from social activities because she can't follow what's going on, it becomes harder to find ways to engage her. Enter animals. Animals are the gentlest of stimulators. Their presence is non-threatening and non-demanding. They're simply there, willing to be touched, cuddled, played with, watched. A tremendous amount of good comes from this. It's novel, it's fun and funny, it's different each time the animal comes, it provides variety, it stimulates memories. I could go on and on. Many assisted living facilities schedule weekly visits from animal shelters, who bring an engaging assortment of critters for the residents to play with. Perhaps your own caregivers or care manager has a pet they'd be willing to bring along to your parent's house from time to time. How about visits to the zoo?

3. Communication can be more frequent if there's a written option. Take a look at my post about the Presto email printing service. Using this machine and service can broaden an isolated older parent's world immensely. While this system doesn't allow immediate two-way contact, it can provide a platform from which you can dive into more topics of conversation. Use the photograph, or the message you emailed your parent to spark new avenues of communication.

4. Reminiscence is a strong pull among the elderly. But it's not possible to always lead your parent down memory lane in every phone call. How about setting up a long-term memory project, which you can revisit with them from time to time? If your parent is able to follow through on tasks independently, I encourage you to give them a micro-cassette recorder with a bunch of blank tapes, on which to record the tales of their youth, your younger years, whatever appeals to them from their memory vault. It may feel awkward to them to speak into the recorder at first, so you can help them get started by selecting the topic you want them to reminisce about and giving them a list of questions. Or, you can do this in person with them the first time or two, till they get the hang of it. You'll need your own microcassette recorder on which to play their tapes to transcribe them. You could also have a copying service copy the recordings onto CDs for you and your family. This sort of project can span many months and include looking through photographs, getting supplemental information from your relatives...a whole host of opportunities limited only by your own creativity.

Well, these are just a few of the ways in which I've broadened my definition of communication in an attempt to offer and receive more from my contact with my mother. Do you have other ways of creative communication with the elderly parent you are caregiver for, that you can share?

Elder Care: Emailing a parent who doesn't have a computer

First, apologies for my evident sloth before, during and after the holidays. But, that's over now, and I have a number of items stored up that I'm excited to share with other elder caregivers and care managers.

The item I'm currently most thrilled about is the Presto machine and service. I know this sounds like an espresso machine, but it isn't. Basically it's an HP printer/fax, combined with an email printing service, which enables someone who doesn't have a computer to receive emails from you in printed form.

Here's why I'm thrilled. I live far away from my aging mother, so for months at a time my only contact with her is via phone calls. As my mother sinks into the dark recesses of dementia her world has shrunk to the very immediate present. Lately, I've realized that it's become hard for her to carry on more extended conversations, because she can't remember what the original topic was about. After we've reviewed her weather and my weather, there's nothing much else to talk about. And the upshot of that is that I am less inclined to call her, even though I'm aware that she needs the contact with me even more. What to do?

Enter the Presto machine and service combo. Here's how it works. You buy the printing machine for your parent. The machine will reside in their home. This is a one-time capital outlay of between $120-$150 depending from whom you purchase it. Along with it, you sign up for the Presto service, which costs about $12.50 a month for a year's service. When you sign up, you create an email address for your parent(s), and enter in the email addresses of all those who are allowed to send email to them. This ensures no spam is transmitted to your folks' home. As well, you declare the 3 times per day when printed emails should be transmitted to the printer. All of this is adjustable as time passes.

Here's what the Presto service does:

1. It accumulates all emails to your parent's email address.
   
2. It prints them out on eye-catching templates along with whatever photos you may attach.
   
3. Thrice daily the Presto machine checks your parent's mailbox automatically for waiting transmissions and then prints them out, again, automatically.
   
4. All this happens right in your parent's home with their having to lift a finger.
   
5. Voila, your parent has the latest news from you (your brother, a distant cousin), along with photographs (if you wish), to have and to hold and to review and to show their friends.
   
6. Other good uses for the machine are to send reminders to parents: about appointments, taking their medication, picking up an item at the store. If you're travelling it's a great way to keep in touch without worrying about time zones or the expense of overseas calls. And what about instant photos of grandchildrens' birthdays, soccer games, school plays, and all those other aspects of daily life that a faraway grandparent so often misses.

Honestly, what a wonderful thing the Presto is. I'm so happy about this I can hardly stand it. Of course, the printed page doesn't replace the sound of a loved one's voice. And keep in mind this is a one-way service, i.e., one cannot use the Presto machine to send you emails as it's purely a receiver and printer. For me that's no obstacle as my elderly mother wouldn't be able to figure out how to use it anyway. The simplicity and automatism of this device is its beauty. In my view, it just may add a whole new aspect to quality of life, helping many family members keep in closer touch than they otherwise could.

Click on this link to go to the Presto website