Elder Care and the Whole Patient

An elderly person with no specific deadly illness like cancer, is still likely to suffer from many of the standard ravages of old age: high blood pressure, cholesterol issues, weak bones, perhaps some anxiety about it all. To treat these health issues that one person will see a cardiologist, orthopedist, psychiatrist, endocrinologist, neurologist and more. Each will prescribe tests, procedures, treatments, medications. Who coordinates it all? Who's looking out to make sure that the new drug prescribed by the neurologist for back pain, doesn't conflict with, or diminish the efficacy of ,a drug prescribed by the cardiologist? The answer, usually, is: No one.

This is one of the most serious matters confronting care givers, care managers and, of course, the elderly person themselves. Unfortunately, though our medical system puts us in the position of needing to monitor medications and our elder loved ones' physical and mental well-being, we are often not the most competent to do so.

Purely on the physical side, it is known that, when you get to your 80s and 90s, your body becomes exquisitely sensitive to drugs. For this reason, not only are lower doses sometimes used for the elderly, but their body doesn't clear the medications as swiftly and fully as does a young person's body. Thus, periodically, drug toxicity can develop in the elderly, simply because their system hasn't eliminated the daily dose of drugs as it should.

There are geriatric internists who strive to maintain a thorough list of their patient's specialists and the medications each prescribes. But they rarely have the support of those specialists. And without that support, which entails sharing of information after every visit, their hands are tied. It's not that doctors don't want to work together. It's rather that specialists in particular have a narrow field of vision about what they're treating. Simply by virtue of having selected a specialty, their tendency is to focus on that part of the patient's body exclusively, rather than viewing their patient as a whole.

A new approach to achieving this Holy Grail of being viewed and treated as a whole person, rather than as a heart or a spine, is being implemented at certain clinics and hospitals. It's called a "medical home." This is not the same as our current system of managed care, where the internist acts as gatekeeper, referring their patient to this or that specialist. In the medical home concept the internist is the head of a team, keeping track of treatments, making sure specialists know of a patient's progress and generally ensuring that treatment is seamless, no matter which physician a patient is seeing.

Now, take this concept and factor in the frailty, dementia, worries of old age. You can see immediately that this approach would be a godsend for the elderly. The model is not at all widespread yet, but it's still worth using this model when visiting with your parent's internist, to see whether they can provide some thing similar to it. I advise, though, that even those who are willing to attempt to keep track of what each specialist is proposing, will need your help. Since your parent's doctors will not consider themselves a team, you may find you'll have to do the legwork and phone work to make sure information from each specialist gets sent to your internist, to be added to your parent's general file.

This effort is hugely worthwhile, as I can personally attest. My experience is that, when doctors know that an elderly patient has an advocate who's tracking medications, and an internist who's interested in the overall well-being of your parent, they unconsciously pay more attention themselves. I have never encountered a doctor's assistant who wasn't willing to fax the information I requested to my mother's internist. And I've never encountered a physician who wasn't willing to take a few moments to explain to me their rational for changing a dosage or a drug.

So, get involved with your parent's physicians. Keep your own record of what drugs and dosages your parents use. Follow-up with the doctor's office after a visit and ask them to transmit their records to your parent's internist. These days this can be as simple as a short fax or email. If something significant changes with your parent's health, you'll be amazed at how helpful these small efforts will prove to be.

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.

Elder Care: Powerful Tools for Caregivers

I've taken the title for this post from the 6-week course given by Legacy Caregiver Services. I already mentioned Legacy in my previous post. I have had the opportunity now to read The Caregiver Helpbook which they offer to class participants.

The class and the book are all about helping caregivers for elderly parents or relatives (or spouses) develop self-care tools to reduce personal stress, communicate their needs to family and health care providers, deal more effectively with challenging situations, and more. The book is full of practical information offered in a straightforward manner. It doesn't talk down and it's not full of psycho-speak. I found every page had something of value to offer me, whether it was something I hadn't thought of or a simple validation that, yes, I was doing the right thing.

If I'm rhapsodizing a bit too much here, it's only because I haven't ever found an offering that is as substantive and validating as what Legacy provides (and, no, I'm not on their payroll!!). I feel quite heartened that a book and a class like those offered by Legacy exist. It's good to have a resource that not only recognizes the subjective nature of what we, as caregivers for elderly relatives, each experience, but offers thoughtful and provocative ideas to help intelligent people help themselves. And lots of resources with addresses and phone numbers, too.

If you want to find out if there's a course offered in your area, or find out more about the book, contact Leslie Congleton at 503/413-7032 or email Leslie via this link.

Elder Care: Being your own expert

In introducing this blog, I wrote that, especially in the realm of caring for one's elderlyl parents, it's important to bring into play your own wealth of experience in life, your intelligence and your intuition. It strikes me this deserves some elaboration.

When I say that each one of us is an expert, I don't mean that fatuously. I'm not claiming that we have more medical knowledge than a doctor, or more legal knowledge than an attorney. Obviously, they are the experts in their field. But each one of us is the expert in knowing what's right for our family, for us, for our geriatric parents.

In my opinion, we've gotten too used to relying on professional "experts", those with a special degree, an impressive title, or "consultant" after their name, to tell us what to do. It calms us to think that Dr. So-and-so has declared the best course of action and all we have to do is follow it.
It makes us complacent: the big decision is theirs, not ours.

But think about it. Doing just what the expert says without evaluating it thoughtfully against your own criteria for the decision, is really an abdication of responsibility. It takes the responsibility for the outcome of that decision off your shoulders and puts it on the shoulders of the expert. If you do things this way, next time a decision needs to be made, you'll be no stronger, no better able to make that decision. The void where self-reliance should be is filled instead by the declarations of these professionals.

When you know what is right and what is appropriate, and you're confident of that, it becomes easier to make decisions. If you never exercise those values or judgments, they stay weak and fuzzy. And that's why making decisions becomes overwhelming and you get that horrible feeling of being tossed in the waves of circumstance.

What you have to start doing is using those experts as tools. Make it your goal to glean what you need from each professional, then take some time to evaluate what they say, and, finally, make your own decisions based on what you believe is best. Practice this any opportunity you get. You'll find your self-confidence and sense of inner strength as an elder expert growing each time you do.

Need more ideas on this? Have a comment? Click on the Comments link below..

Elder Care: Trust your instincts

One of the main premises of this blog is that we all are experts in our elderly parents' care. All we need to do is acknowledge how much we know and can apply to the elder care situation from our other life experiences. And we have to become willing to find the inner strength to rely on ourselves a bit more. Not that specialized experts don't have their place. Clearly they do. It's just that evaluating what those experts say, and then making judgments and decisions, has to come from within us. It's not up to any geriatric expert to decide what's right. The expert's job is to share information. From there, it's up to each of us to weigh all the factors and make the decision.

Betsy posted a wonderful comment recently. I highly suggest you read it in its entirety. Just click here to link to it. Her comment speaks to the heart of what I'm getting at. She highlights three things that she found invaluable during the last year of her elderly father's life:
1. Trust your gut feeling.
2. Develop a sense of gratitude for what others do for you and be willing to ask for help when you need it.
3. Be creative--think outside the box especially when you are faced with what seems like an intractable problem.

Here are just a few reasons why I think Betsy's comment is so important:

1. When you learn to trust your gut feeling, and are willing to act on it, you move from being a victim to being in control.

2. Being grateful is a good emotion. It removes the guilt many feel when having to ask for help----guilt which is negative and energy-sapping--- and replaces it with a sense of connectedness and support, all of which is positive.

3. Creativity is your greatest ally. When you are not constrained by what others says is the right thing to do, when you begin to allow yourself to come up with seemingly outrageous options, you'll find that your boundaries are suddenly wide open with possibilities.

What do you think? To post a comment in reply, click on the Comments link at the end of this post.

Elder Care: Stress relief for solo caregivers

I received an email after my post on Learning to Speak Up, which raised a good question: "... with regard to having some 'time off': What do primary care givers of elderly parents do if they don't have a spouse or partner..i.e., aren't married or in a committed relationship ? And perhaps don't have siblings that are willing or able to take over?"

In considering this question, I first had to take a step back. Here's what I see: Even people who have family or sibling support have trouble learning how to take a break, or that needing a break is OK. For some, allowing others to help them is really hard. They don't trust that another person will do things as well as they themselves will. Or they think that admitting they need a break or some help is a sign of inadequacy. For others, there's just honestly too much to do and too few hours to get it all done. In all of these scenarioes, there are two fundamental things going on:
1. Not wanting to give up control
2. Not knowing what your limits are and therefore not knowing how to set them.

If you are in the caregiving position without family to support or relieve you once in a while, you can decide either:
--To devote your entire life to your parent's care (because there's an endless list of things that need doing)
OR
--To learn your limits and be willing to give up some control.

There's a spiritual element to this, of course. Setting limits and relinquishing some control means learning to accept that it's OK not to do everything that your parent could possibly need. But this is the way you regain some freedom and diminish the stress that comes with being chronically worried and overloaded.

There are some practicalities to making this happen which you have to be willng to pursue diligently:

1. Take a clear, hard look at priorities for care. Mental and physical health are usually the priorities, along with at least something that pertains to quality of life. What are you doing now that you can eliminate without endangering the first two or totally eliminating the latter?

2. If you can afford it, pay someone to take care of some of your current tasks. These could be things you aren't going to do for your parent anymore, or maintenance things in your own life that you could pay someone else to do:

• Hire an independent caregiver to do what you can't do. To find the right person to work with/for you, you have to network like crazy. Call independent and assisted living facilities and talk to their staff for recommendations. Talk to your parent's neighbors. Search the web for senior services and private nursing services in your parent's area. Talk to them about their services and if they can recommend others who do more precisely what you're looking for.
• Get a bill paying service or bookkeeper for your parent's bills and maybe also for your own bills. Or set up as many bills as possible for automatic payment. Yes, we all can write checks. But this is also something that you can easily job out and free up some of your time each month.
• Get a house cleaner in every couple of weeks.

3. Learn about, use and invest in technology. There are senior cams that can be installed in your parent's home. There are services which will call your parent at daily or at preset times, to check they're up and about.

4. Call on your friends, acquaintances and colleagues for any routine chores that can be shared out. If you take your kids to school or sports, can they carpool with someone else?

5. Think long and hard about your parent's ability to continue living in their current home. Are they really coping and doing well? Or are they struggling to maintain the impression of independence, at a high cost to themselves and to you? If your parent's care is overwhelming you, and you can afford it, you may have to bite the bullet and move them, over their objections, to assisted living (see my post on The Big Move).

6. Find the element in life that gives you peace, and award that to yourself every day. This could be getting a breath of fresh air, listening to your favorite music, cooking, picking up your kids at school, who knows... But find out what it is and commit to it for yourself every day. This means returning to living your life consciously and giving as much importance to yourself and your needs as you do to those around you.

And now, here's the key: Accept that you are no longer going to control as many aspects of your parent's care as you used to. Accept that there are some things that simply won't get done... And your parent will still be OK. In some case, you'll hire others to do what you otherwise would have, they'll do things differently and your parent will still be OK. It goes without saying that you're not simply handing over your parent to someone else without assuring yourself that the caregiver is trustworthy, and then checking on them from time to time. But you will build a strong safety net for yourself by doing so. You will give up that control for the benefit of your own health and well-being. This isn't being selfish. This is being pragmatic.

Elder Care: Speaking Up for What you Need

In my last post, I offered some tips on how to start speaking up for what you need and what you want. Of course, one could write a book on the subject (and maybe I will someday)! Within the confines of blog posts, however, I suggested just a few simple steps you could take to start speaking up.

To me, as a caregiver for an elderly parent with dementia, speaking up is an essential skill for regaining some control over your universe. Here are some examples where knowing what you want and speaking up for it can be really helpful.

Medical Matters, including doctor visits, ER and other hospitalizations
Have you ever been in the situation where, after the doctor leaves, you scratch your head and ask yourself, "What did he just say?" Medical matters with regard to elderly parents are always complicated. Typically there are multiple medical issues to consider, various treatment possibilities to understand, a variety of drugs influencing each other, not to mention the anxiety of seeing one's parent in pain or distress. Physicians have less and less time, and sometimes too little patience, with geriatric cases. I've found this can be true even with doctors who claim a specialty in geriatrics.

Being able to speak up in medical situations is difficult, but crucial. Here's how I break this down into the rock bottom need and want:
What do you want? to understand the medical matter confronting you.
What do you need? for the doctor(s) to explain the matter to you clearly and completely.
How do you get this? Present what you want simply and nonjudgmentally. For example:
"Doctor, I am my mother's principle caregiver. I want to be able to make the right decisions and to do that I have to understand the medical issues confronting us. Could I ask you to explain the situation to me as simply and thoroughly as you can, so that I can understand it? And please bear with me if I need to ask some questions. If this isn't a good time to go into the detail I need from you, can we set a time right now when we can talk about this?"

Family matters--time for yourself
One of the recurring themes in caring for elderly parents is how it encroaches on your time. and energy for other things. You're working, you're raising a family, you're keeping your spouse happy, AND you're now responsible for all sorts of things related to your elder parent's well-being. If you don't speak up for your needs you'll eventually explode and one of the above will suffer. Here's how I break this down into the fundamental want and need:
What do you want? Not to be responsible to anyone for anything for a period of time (a night, a few hours, whatever works for you)
What do you need? For your spouse to take over your chores for that particular period of time.
How do you get this? Try this out: "Honey, I want to be able to take care of everyone and keep up with all my responsibilties as well as I possibly can. You know that's really important to me and I take it seriously. Right now, though, I'm truly exhausted by it. I need a break. Could you (take care of the kids for the next few nights) (manage dinner for me this week) (take over the laundry this weekend)? If I just don't have to think about or be responsible for this it'll help me more than you can imagine!"

Ok, ok, maybe you won't call your partner "honey" but you get the idea!

Have you encountered any situations where these ideas could help?