Elder Care: Little Clues to a Change in Condition

Suppose your elderly parent has been trundling along at the same level of cognitive functioning or physical health for some months. As a lay person, how can you assess on your own the changes in their condition? Do you have to have medical knowledge in order to know that something's different? Actually, in many cases, you can determine this yourself if you're willing to keep your eyes open for little clues.

Take, for example, a dementia sufferer. In my hypothetical example, my dementia sufferer (I'll call her DS) has noticeable short-term memory loss. Still, DS knows the days of the week. She gets herself to all meals on her own. She's well-groomed and enjoys being tastefully dressed. She likes going to her favorite shops to snoop around, or for a walk at the beach, knows where she is and where she wants to go. She remembers significant dates, too, and the celebrations that go with them. She can hold a conversation, although it's a repetitive one, with the same question being raised or statement being made every few minutes. Nevertheless, people who talk with DS casually would be surprised to learn that she's already well into the decline of dementia.

Over a 6-month period, DS's dementia progresses with some sharp drops in cognitive functioning. What are the clues?
Clue number 1: As per family tradition, DS phones her children on Thanksgiving Day. Four weeks later, she does not call her children on Christmas morning.
Clue number 2: DS wears the same T-shirt for a week. Her hair is sometimes disheveled at meals.
Clue number 3: A beloved daughter's birthday draws near and DS cannot remember that daughter's birthdate.
Clue number 4: Reading material is scattered around her apartment, with every magazine turned open to an article.

Any one of these clues might not be considered big enough or definitive enough to indicate a significant shift in DS's dementia. But them together and it's obvious that DS has experienced a steep decline since Thanksgiving. She's not grooming herself well, crucial dates which she's known most of her life have vanished from memory, she's unable to remember a sentence long enough to actually read and finish a magazine article.

Of course, this is just an example. Still, you might try to collect bits of information pertinent to your own parent's condition and then track it. Start with a baseline, which is simple to do. Just jot down a few observations on the essential aspects of your own parent's present condition. Start to keep your eyes open for little clues, such as I made up above. Teach yourself to value the small, indirect bits of information that form your parent's life and don't wait for just the big changes. Keep a record of your observations (and don't self-edit!!). Every 3 or 6 months, read back over what you've noted down. Doing this will help you put together a broad pattern of health or decline. You'll be amazed at what you can learn from it.

Elder Care: Long-Distance Caregiving

One of the more difficult issues to manage when caring for an elderly person is knowing when there's been a paradigm shift in their mental or physical well-being that's significant enough to warrant action on your part. I've been ruminating about this quite a bit lately, in part because I've been overseas for two months. But also because, even when I'm at home, I'm 1500 miles away from where my mother is.

I rarely see my mother, yet I'm responsible for managing her care. How do I do this when I'm so far away? I can summarize the gist of what I do in the following list. I am aware that the frequency of what I do may seem lackadaisical to some, while others may find it more than they have time for. As you read this list, don't get stuck on how often I do something. Take the general types of actions and communication I'm suggesting and see if you can make it work for you in your own way.

Here we go:

1. I work hard to open and then maintain channels of communication with the directors and staff at my mother's assisted living facility. They are my most immediate eyes and ears. I speak with them at minimum quarterly. In between I email them updates on anything of interest from my mother's doctors, so they know I value their attention to these things. If there's something that I deem of critical importance to me, I don't hesitate to pick up the phone and talk to them. I try not to leap to hyper-critical conclusions when something seems to go wrong (though this is hard sometimes!). The more I talk with the directors, the more I learn there are usually two or more valid sides to every issue. And the more they speak with me, the better sense they have of my involvement with my mother's care and what I need from them.
   
2. I keep in touch with my mother's medical specialists. Although I've asked each of them to inform the Geriatric Specialist who's the overseer of my mother's health after any visit with my mother, I realize they don't always get to this. Instead, I get reports from the Care Manager who accompanies my mother to each doctor visit. If she hasn't been able to get a report from the doctor herself, I will call the physician's nurse and ask her to fill me in. Then, I circulate that information by email or fax to the other medical specialists myself. I've gotten only thank yous for doing this. Every doctor seems to appreciate having this extra information in their file.
3. Every 4-6 weeks, I speak with my mother's two morning companions who take her on morning outings 5 days a week. When we talk I express to them how appreciative I am of their insights, even if they haven't told me much new. I also give them emotional support and kudos for their caring and attention to my mother's needs. And I offer suggestions of what they can do to handle whatever tricky situation(s) they may mention to me. I want them to know that I'm grateful for their loyalty. And I also want them to know that I'm aware of what they're doing, even though I'm far away.
4. Lastly, and most importantly, my sister (who lives near my mother) and I continually reevaluate the role that each of us plays in supporting our mother. She regularly updates me on what she sees and what she's done during her frequent visits to my mother. I factor her assessments the setting of appointments, the follow-through that I ask of the assisted living staff, the information that my mother's companions need to know about her and more.

When managing an elderly person's care from afar, the key is building and nurturing a circle of communication. You might think that the most important word in that last sentence is "communication." It isn't. The most important word is "circle." Why? Well, think of a bicycle wheel. You're the hub. The spokes reach out from you to the significant others on the team, whose presence enables you to manage appropriately. And the wheel to which the spokes connect ensures that the information that's vital to everyone gets to them, not just to you. Without that potential to circulate, information is lifeless...it's just data. To transform information into actionable elements you have to help it get beyond you, to the others who need it. Doing so is what will make you more comfortable with your parent's well-being, even when you can't check on them yourself. And, as important, it'll give you options and resources to call on when an emergency arises.

Elder Care: Making Medical Decisions

One of the things that concerns me in managing my elderly mother's care, is that I'm placed in a position of deciding matters of life and death, or, less dramatically, physical well-being. Over all, I'm a decisive person. I don't prevaricate and I enjoy making decisions and then moving on. But I'm not a doctor nor do I have any medical background. Thus, as her caregiver, I don't believe I have the proper training or information to make the best decision, or in some cases, perhaps even the right decision. What I do have is this:
1. a good gut instinct,
2. access to information and the ability to use it,
3. a wonderful, helpful and knowledgeable sister,
4. a fantastic care manager who's a nurse as well,
5. a firm handle on what I believe is the direction my mother's medical care should take.

I don't underestimate the value of any of the above ingredients to good decision-making. Nevertheless, the whole arena of making medical decisions for an elderly parent is charged with subjective issues. Face it, this is a parent we're talking about, which on its own makes decision-making tough. Add to that that medical and health issues in the geriatric arena often are emergencies, thus inherently not given to calm, thoughtful processing of information. As well, the momentum of medical care is such that one tends to be advised to "do whatever can be done" regardless of the long-term benefits. But, in the case of an elderly patient, how long is "long term" anyway? Or better still, how long is "long term" to you and your parents?

I listened to an interview of Dr. Robert Martensen on the public radio program Fresh Air the other day. If you want to listen to the interview, click here. Dr. Martensen, a bioethicist and ER doctor, had a lot to say about how inadequate doctors usually are in a) giving enough information to patients and their advocates b) knowing enough about the patient to make the information pertinent to their situation, and c) allowing enough time for patients and advocates to discuss the situation and options for care in a meaningful and substantive way.

Dr. Martensen's comments made me realize what's essential in the medical situations elder care givers face. What we have to do is modify the information the doctor gives, so that it's relevant to us and our situation, rather than being just generic medical information about a condition.

Think about it. The only way to make a good decision is if the information you have is specific to your needs, your ethics, your values, your desired outcomes. When you look at it this way, it's clear that you need to do some homework ahead of time, so you know what your desired outcomes are. For example, take the issue of health care directives. It's one thing to help your parent put an advance healthcare directive in place. It's another to work through for yourself whether you really will be able to instruct the withholding of a potentially life-saving drug or procedure when the time comes. Put another way, it's easy enough to fill in a form; it may not be so easy to implement the instructions of that form when faced with mortality.

I guess what's become a little clearer for me is that my ability to make the best call when the time comes, and my own peace of mind about it, will be based on the thinking and evaluation I do right now. It behooves all of us to spend time sorting through the issues on our own, before we're faced with having to make a crucial decision in real time.

I've been gone too long!

To everyone who has been reading this blog over ths past two months, thank you for bearing with my long absence. Since end of January I've been on extended trip through India. Yes, I know that I could have been posting from there. But, to be honest, it was good to take a break and it also was admittedly difficult to focus my mind on the matters here at hand while also trying to absorb everything I was seeing around me.

I'm on my way home now and plan to start posting again within a week.
You've all been great to continue checking in. If there are particular issues on your mind that we should start (or resume) talking about, please let me know.