Elder Care: Making it through the Holidays

I've been thinking about the holiday season and why it is that this is a difficult time for those whose parents are old, frail and, possibly, living far away. What's really going on with this? I've thought through all the standard reasons given and come up with my own synthesis of what happens during this time of year.

If you're like me, this time of year calls up years of family celebrations while you were growing up. We weren't a large family, just my sister and I, with family relatives all living overseas. But my parents celebrated each holiday with gusto.

At Thanksgiving there were always friends invited over and a gorgeous table set by my mother, who had inimitable taste. I recall the annual Thanksgiving mornings spent on my favorite assigned chores: polishing the silver and shining the Red Delicious apples, then creating my own version of a striking centerpiece made of seasonal fruits. And the flurry of activity as friends arrived and were settled in their guest rooms for the overnight visit. At Christmas, the same flare was brought to the observances. First picking out a suitable tree, just the right height and triangular shape, always a sprucy-sort that was dense with branches. Then, the emergence of boxes of fabulous tree decorations, the ornaments nestled in crinkly tissue paper. For us, Christmas Eve dinner was always special, and the excitement of not knowing when Santa would come down the chimney was nearly unbearable.

These rituals of celebration which we followed every year are indelibly etched in my mind. Even so, when it comes to Thanksgiving or Christmas I don't really long for those bygone days. But every one of my senses does remember them in detail. If my own memories of those times are so rich, how much more so must they be for my mother, who now lives in a wonderful assisted living residence, but is nevertheless alone there and without close friends or family?

This time of year, unlike any other, drives home the difference between what was then and what is now. At other times of year, I am able to mask the reality of my elderly mother's present life. But Thanksgiving and Christmas, which are all bound up in tradition and family, make it abundantly clear how reduced her world has become.

This saddens me, but it doesn't drive me into a frenzy of compensating for what isn't. I find it's more helpful simply to recognize how I feel about things, and why I feel the way I do, and remain philosophical about it. I make a specific choice to dwell on what's going well and appreciate the existence of those things. It's true my mother doesn't have the family gatherings around her such as she used to create with such verve and style. That is sad. Yet it's also true that she is surrounded by kind and engaging people, her health is watched over by competent and sympathetic nurses, she has her own lovely small apartment, and she's able to go out to her favorite spot by the ocean most days of the week. These are things I'm really grateful for.

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: caregiver training and more

Thank you to Ryan Malone, who commented on my previous post Dementia and Montessori. I want to call your attention to Ryan's site: Inside Assisted Living. I urge you to peruse the information he has collected. It's full of good ideas, and also has links to three other blogs on elder care. I've looked at a number of sites and blogs that present such information and I find most of them are a bit weak. What Ryan's put together, and the blogs he links to, are topnotch. I'm not going to repeat the blog links here, because I hope you'll take some time to go to Ryan's site and get into them yourself.

Another exciting resource I've found is Legacy Caregiver Services, in Portland Oregon. They have developed a 6-week course for family members caring for loved ones, called Powerful Tools for Caregivers. To spread the word, they've trained leaders to present the course all over the country. Judging by the course outline on their website, they've really captured the essence of what people in our situation want and need to know about. I was glad to see there's a good overlap between the issues I'm getting into here on Mimi's Place, and what they discuss.

As part of the course, you receive a handbook, which Legacy has been gracious enough to send to me. Once I have a chance to read it I'll post information on it here. So check back..... And to learn about their class, go to their website Legacy Health Services. You'll need to email them to find out if there's a class being offered near you.

Do you know of any other really solid websites or other offerings, that actually get to the nitty-gritty of our situation? If so, please email me about them.

Elder Care: special attention for dementia

There was an interesting article in the New York Times Education section on Sunday Nov. 2. Titled Coming Full Circle, it describes the use of Maria Montessori's teaching techniques to create activities for elderly people with Alzheimer's and other memory deficiencies.

Some assisted living and dementia care facilities are now using the full-time program developed by Dr. Cameron Camp, an experimental psychologist. His program uses Montessori techniques to "build on existing skills and habits, with the goal of improving quality of life and independence by using cognitive strengths to neutralize weaknesses, making frequent use of repetition to create unconscious learning." More specifically, Dr. Camp says, "the key to working with someone (with memory deficiencies) is to build on the skills she has retained--writing, reading, playing the piano--rather than letting her deficits limit her life."

To quote further from the article,"A common misconception about people with dementia, Dr. Camp said, is that they no longer learn. But they do: residents learn to find their dining room table, for example, well after the onset of Alzheimer's disease. And because they no longer have the higher brain function they had as adults, he reasoned, they are well suited to Montessori."

A number of facilities around the country are now using the programs and materials developed by Dr. Camp through the Myers Research Institute in Beachwood, Ohio. Again, quoting Dr. Camp, "We start by saying that a person with dementia is a normal person with memory deficits. Then you can circumvent the deficits by using the strengths. That's how you create what Montessori called 'normalized environments,' meaning environments that challenge you but let you succeed."

I find this fascinating. What a wonderful approach to the dementia conundrum. Nobody per se is talking about restoring dignity or self-respect, but you can see from the description of these programs that that is the outcome.

My elderly mother who has dementia is in an assisted living facility that runs such a program, which they call Circle of Friends. My sister and I enrolled her in the program, but she had only negative things to say about it and refused to attend for more than a few minutes. In reading this article, I now think that perhaps she was still too disoriented by her recent move to assisted living and couldn't focus on the the activities. Her response was to say something insulting and leave in a huff. Now I'm hopeful that, as her memory loss progresses, she may actually be more acquiescent about staying in the program. I feel very lucky that she's in a facility that is forward-thinking enough to offer such a program.

If you are the caregiver of an elderly parent is in assisted living or Alzheimer's care, check if they have a program like this. And bring this program to their attention. The more places that offer this sort of program, the better! Here's the link to the article, which is worth reading in its entirety: www.nytimes.com/2008/11/02/education/edlife/montessori.html?_r=1&ref=edlife&oref=slogin. This should take you directly to the article. If for some reason this link doesn't work, just go to www.nytimes.com/edlife and search the issue from Nov. 2, 2008 for the article Coming Full Circle.

Elder Care, Stress and Ego

The issue I wrote about last time had to do with handling the guilt of not being able to do everything you, as caregiver, think needs to be done for your elderly parent. There was a great comment from Linda in response to my last post. She advises something which I hadn't thought about: think about how your parents see themselves and then try to do what's needed to support their vision of themselves, rather than your vision of them.

This is a wise statement in a very simple form.

I think that in order to implement this, you have to take some of your ego out of the picture. In some respects, elder care giving for parents can become weirdly competitive. Here are some hypothetical examples, just to explain my point: So-and-so's parents are 99 and still able to live at home, but yours have been in assisted living for years and are only in their 80s. Or, so-and-so's parents have so many friends and go out visiting all the time, but yours can't seem to get along with anyone and spend their time alone.

I'm making this up, but you can see where it leads. As we talk to each other about our respective situations, inevitably comparisons crop up. I don't know about you, but I do find myself feeling wistful when I think someone else's setup is so much more together and fulfilling than mine. And I start to wonder then whether I should be doing things differently or if I could do things better.

If I do a good job of thinking in the terms that Linda suggests, I'll be able to refocus on the fact that the way things are set up for my elderly mother, who has dementia, are really ideal for her. They're not going to change her into the sort of elderly person I wish she could be, but they are perfect for her as she is. And, after all, that's the point, isn't it?

Elder Care: Managing Stress when you can't do everything

In one of my early posts, I presented a list of 10 ways to reduce the stress of having an elderly parent who needs your care. I'd like to return to that list, to share some thoughts on my suggestion #5: accepting that you may not be able to do everything that could be done for you parent.

How do you do this? If you recognize that something needs attention, how can you then ignore it?

There are several facets to this issue that may help explain it:

1. Realize that you are already skilled at selecting what to do versus what you can't or won't do. I offer for your consideration that in all aspects of your life you are already making choices about what you will do among the many options available to you. You do this when you prepare a meal, when you attend your son's soccer game, when you enroll in a night class at the local college, when you get up early to exercise before work. Every one of these examples presents you with a choice. Making these choices is so common in all adult lives that we don't even realize that we are accepting not to do some things when we decide to do others.

In each example above, the decision you make, by its very nature, means that you are not going to be doing something else during that time. The difference between my examples and making the same choices for your parent, is that you are already so practiced at the choices in my example, that you probably don't even think about them. Nevertheless, in each example I give, choices do exist. If you deconstruct for yourself why you are going to your son's soccer game (instead of working on a house project), or why you're getting up early to exercise (instead of sleeping in), you will find reasons for each choice you've made. And you'll relearn how you've made your priorities. That same goes for deciding what to do or not to do as a caregiver for your parents.

2. The notion of not doing everything that could be done for your parents is charged with guilt. Unlike some other aspects of life, it seems there's an unwritten code that, when it comes to aging or elderly parents, everyone's expected to be a super-hero. My question is: If it's unreasonable to believe that you can do everything in other parts of your life, why do you think you should now be able to do everything that needs to be done for your parent? If the former's not possible, why is the latter supposed to be possible? The obvious answer is simply: It isn't possible. Yet because this is our parents we're talking about, not doing everything makes you feel guilty.

I think some of this guilt comes from the fact that we no longer live in extended families, yet we still recognize what the extended family provided. It used to be status quo that the elderly and infirm lived with or near their relatives, that sisters, cousins, et al were nearby, and everyone could pitch in to help care for those who needed it. In our society, which is almost defiantly mobile, that support net no longer exists. It's great that we can all live where and how we want, but many people are also wistful for that sense of community and the support of family which have been lost in the process of endless moving. The one person who's left to take care of a nearby parent shoulders the burden of what used to be done by the extended family. We still know what could be done if there were lots of relatives around and because of that, we feel guilty that we can't accomplish it on our own. Remind yourself that you're only one person. It is not a platitude to say there's only so much that one person can do.

3. Doing the best you can is good enough. Here the issue is accepting that indeed you are doing the best you can. Deep down inside, no parent expects more from their child. Yes, in the throes of sorrows, aches and uncertainties, your parent may well gripe about many things. I think that's normal. It's not fun to feel bad all day long, to be worried about your health, to be confused. Putting aside our parents, many of us would agree that we have experienced those close to us dumping their aggravations on us. In my view that comes with the territory of being close to someone....you get great love and you also are the closest at hand and so get lashed out at from time to time. It seems it's no different with parents. But (and this is a big caveat), that doesn't mean that everything your parent says they need, or everything you may recognize could help them, has to be fulfilled. And it doesn't mean that, just because your parent asks for something, that they really need it or expect to get it. Sometimes it just helps them to express a wish, even when they know that reality won't match it.

To diminish the stress of not being able to do everything, you have to keep foremost in mind all the things that you are doing, and doing well. Congratulate yourself for those. Focus on what you've accomplished for your parent, whether small or large. This could be things like the fact that you are indeed calling them every day (and, no, you're not able to visit them every day and that's OK). Or you've set up a reliable meal service for them (and, no, you're not able to provide them with meals at your house every day, and that's OK). Or that you've gotten them involved in a fun and engaging outing once a week (which you can't attend with them, and that's OK).

I hope you see what I'm driving at here. If you train your mind to appreciate what you have accomplished, and allow yourself to feel good about that, there'll be less and less room for the distress of not doing everything.

Elder Care: Focuse on Care Managers

I've written a couple of posts on caregivers for the elderly and infirm. There's much that can be said on that subject and I will be returning to it. For right now, I'd like to draw attention to Care Managers who assist caregivers for the aged, those with dementia and others.

A Care Manager is an essential element of the parental eldercare package. This is particularly so for those who live far away from their parent, or who are so tremendously busy with work and family that they cannot do all the things that their parent needs. I also want to offer my opinion that, as our parents age and lose abilities, it becomes next to impossible to know what's really going on if we're not there every day. This pertains not only to how they're doing in their home, but also to their medical care and their medical needs. I'm talking about objective information here, not the subjective view of friends and neighbors who themselves may not be fully "with it."

In my experience, a quality Care Manager becomes your surrogate, doing what you'd otherwise do if you lived nearby. They also become your advocate with various services, ensuring your parent's living situation is as good as it can be. And they can become your medical watchdog, keeping tabs on chronic and acute medical issues so that changes in health are quickly identified and treated.

So, we have:
Surrogate
Advocate
Watchdog

Phew! That's a lot to ask of one person. And where would one find such a gem anyway? I have worked with Care Managers (CMs) from two different sources: through a caregiver agency and privately.

1. Agency CMs: Many agencies who provide caregivers also assign a Care Manager to each client. Generally speaking, the agency CM's job is to be the main client contact with you, i.e., they are the one to call with new needs, complaints, changes. etc. As well, they introduce new caregivers when needed, help ensure your parent is watched if a current caregiver is unexpectedly absent, check that whatever program is in place is actually being followed, handle emergencies, and, possibly, help setup medications.
Agency CMs typically have a heavy client load, being assigned as many as 25 clients at one time. You can see immediately that, even with the best will in the world, an agency CM has only a very limited amount of time they can spend with any one client. In my view, that's a serious drawback. My experience has been that, even though agency CMs give their all to their jobs, they are able to do only very basic supervision and monitoring, along with appearing in the ER if there's an emergency, and little else. Thus, in my view an Agency CM is best suited for low-maintenance cases only.

2. Private Care Managers: Care Managers who work independently rather than under the auspices of an agency, typically do so because they want to be able to focus more attention on fewer clients. As with caregivers, there is no specific degree or certification that a CM must have in order to take on such work. However, the more capable CMs tend to have a background in nursing, geriatric care, psychology or social work, each of which provides appropriate experience and a good personality type for working with the elderly. Private CMs take the risk of potentially not always having a full workload, but gain the reward of being able to determine a client load for themselves that maximizes their ability to serve each client well. A private CM may be well-used to high-maintenance cases, or situations where your parent's needs shift over time.

Regardless of whether you use an independent or agency CM, it's up to you to establislh how much or little involvement from your CM you require. Our mother's CM is an LVN. She's a trusted resource for scheduling and attending doctor appointments, relaying the doctor's report to me, attending ER visits, checking the medications and general health info at the nurse's station at my mother's assisted living facility, keeping tabs generally on how my mother is doing, meeting with my mother's companion caregivers monthly, explaining medical procedures to me, and more. She's an excellent sounding board for ideas, because she has broader exposure to elder care issues through her work than I could possibly have. Her time may fluctuate from a few hours over 2 weeks, to much more if there's an emergency room visit to attend. She's a friend and a professional, whom we rely on implicitly.

Finding a private care manager takes some networking and interviewing. A good resource to start with is the National Association of Geriatric Care Managers http://www.caremanager.org/ Many cities have a Jewish Family Service, an invaluable resource for assistance. There's also the Social Services department at your local hospital. As with caregivers, be prepared to spend as much time as you possibly can networking for options, interviewing and talking to references.

My final suggestion is assess for yourself where a CM can make the most meaningful contribution to your time and your peace of mind. Perhaps it's attending doctor appointments only. Maybe it's just managing the caregivers you've hired. Be creative and be flexible. Give the relationship time to develop, so you can observe for yourself what your CMs strengths are. A CM can be a wonderful addition to the care team. And they become a true lifeline if something should go wrong with your parent and you can't be there.

I'd love to know about others' experience with Care Managers. Do you have anything you can share on this aspect of elder care?

Great websites

I want to draw your attention to something I've just added to this blog site: a list of websites and blogs that I think offer the best of information and ideas for those caring for their elderly parents.

I'm not actively going out to find these sites. However, when an outstanding or especially useful one comes to my attention I'm going to share it with you here.


Look on the sidebar at right, under the heading Websites I Like, and take a little time to peruse what these sites offer:

Aging in Place: a round up of various cool technology that facilitates seniors staying at home. Also offers musings related to what seniors really need, all in a well-written and clear presentation by Lauri Orlov.

ShirleyBoard: offers some useful online tools to help organize the plethora of paperwork and info that caregivers have to manage. ShirleyBoard also links to:

SeniorCare Marketer: Although this site defines itself as geared to the business of aging, I found it contains excellent posts on issues related to the future of senior care, along with useful links. It's refreshing to read well-written, thoughtful pieces about the industry of aging. Personally I find such knowledge useful in evaluating the services and products I need, along with helping me make sure my expectations are valid.

I'm in the midst of evaluating a very unusual website that I think you'll love. Check back soon.

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: Caregiver Abuse

Those who need to depend on caregivers are justified in worrying about the trustworthiness of the person they're letting into their home. Iti's a given that an elderly person who needs a caregiver is in a dependent state. If they weren't, they wouldn't need a caregiver. All the aspects of aging that create dependency--hard of hearing, don't see well anymore, take naps a lot, can't remember very well, lonely--contrive to create a situation that is ripe for exploitation. So, yes, there's a lot to worry about.

But that's not what I want to address now. Rather, I want to give some exposure to the all too frequent abuse of caregivers by their clients. The work of a caregiver is not (yet) a degreed profession , unless you're at the nurse level of caregiving. Thus it is open to anyone who is willing to do the hard work. In some respects, the caregiver is part of what I consider an underground industry. Caregiving per se isn't regulated. There's no certification required to be a caregiver, and those who need the caregiver often are in somewhat desperate circumstances themselves...desperate for help, desperate for relief, or even just desperate for company.

Look further and you see the client and caregiver isolated in the client's home, typically without supervision. Ues, for those so inclinced this offers a perfect opportunity for a caregiver to take advantage of their client. It also makes it easy for clients to become abusive with their caregiver who likely is very dependent on their hourly wage and not in a position to walk away from the job.

We want the caregiver to be caring, kind, to drive carefully, to remember instructions and to use their best instincts in the care of our parents. We want them to help our parent with errans, take them to doctor appointments, and not steal. Yet we're not willing or able to pay much to our caregivers. An agency sending a caregiver to my parent's apartment may pay them $8-$10 per hour. If I hire an independent caregiver, the rate may be $11-$13, depending on the number of hours I want them to come in. By comparison, there's the auto mechanic, for which your local repair shop may charge $60-$120 an hour. Considering who it is we're making caregivers responsible for and the attention we're asking them to pay their work, the job is, in my view, poorly paid.


In my experience, a caregiver often is someone who's working 2-3 jobs and really needs the money. This puts them in a position that their clients also find easy to exploit. I've heard stories of caregivers whose clients scream at them in the most rude and brutal manner, who require the caregiver to reserve time for them for weeks, but don't pay them for holding the time open, and many other thoughtless and disrespectful actions that I find appalling.

There are many caregivers who take great pride in their work, who are eager to learn new skills to improve their performance and who grow to be deeply fond of their clients. As would any other worker in personal services, caregivers thrive on kindness and concern for their well-being, and repay tenfold when they are treated with dignity and respect. And doesn't that sound just like the way we want them to treat our parents?

Here's what I urge anyone who already has or is considering engaging a caregiver to do:

1. Go overboard in treating them as professionals.

2. Pay them a bit more than the going rate, even just 50 cents more. And pay mileage for when they drive your folks around, and also if you ask them to work for less than 4 hours.

3. Get to know them as people, their lives, their other jobs, their families, their worries.

4. Be considerate of their needs so you can expect them to be considerate of yours.

Elder Care: Caregivers-choosing what's right for you

One of the ways to alleviate stress is to find a caregiver to give you a break. The break can be a physical one, as in "I can go out because I have someone to stay with Mom while I'm away." Or it can be mental one, as in "I don't worry as much because I know Mrs. Smith is with my Dad at night." And of course, if you're lucky enough to find the right sort of caregiver, it can be both.

There are many types and classes of caregivers. To start I can separate them into the following general categories:
Personal aide: does light housework such as laundry, making the bed, vacuuming, dishes. Assists with food shopping and other light errands. Drives client to doctor appointments and other outings. Provides companionship.
Caregiver: does all the activities of a personal aide, plus assists with any of the activities of daily living (ADLs) required. The ADLs, as defined by insurance companies, are, bathing, continence, eating, dressing, toileting and transferring (safely moving into or out of a bed or seat).
LVN or RN: By definition an LVN or RN can set up and administer medications, check and understand medical charts, manage medical information for your parent, attend doctor appointments and advocate effectively in ER situations.

Within each of these categories you will find people with a great variety of experience. Some will be experienced at working with terminal illnesses, others with dementia and Alzheimers. Some will have worked only in a supervised care facility, such as skilled nursing or assisted living. Others will be accustomed to working independently in a client's home. Some will want a live-in situation and others will prefer hourly work. There are agencies which provide caregivers, doing all the background checking for you (and charging accordingly) and there are also independent caregivers who work directly for you. Naturally, good caregivers come in all ages and nationalities.

If you're actively thinking of getting a caregiver of some sort to help you, consider approaching it as you would the hiring of an employee. For example:
1. Write down the aspects of care which are most important to you.
2. Select caregivers to interview who actually have experience in those aspects. There's no need to pay for an RN if what your parent really needs is someone to keep them tidy and drive them around. Conversely, you'll be making your life more difficult if what you really need is medication management and you hire someone who can't tell the difference between Digoxin and Darvocet.
3. Talk in detail with their references and ask the hardest questions you can think of. For instance, ask for two things that they were unhappy about with the caregiver in question. Find out how many other caregivers they've used. If they've only used one, they may not have great perspective. If they've used 50, they'll have lots of advice and good stories for you.
4. The peace of mind in having a caregiver comes from knowing their common sense reaction matches yours. If at all possible, interview prospective caregivers in person . There's much to be learned from body language and eye contact! Ask questions that put them on the spot. You're not trying to ferret out murder and mayhem in the interview. But you are trying to learn as much as possible about a new person ahead of time, so there are fewer surprises late on.
5. Be honest about your parents' foibles, their general way-of-being. Are they bubbly? Do they prefer to be alone? Are they hard of hearing? Do they accept they need help or that you need help?

Do as much as you can to assure yourself that you are making a good choice. This will stand you in good stead when your parent tells you that the new caregiver is incompetent, rude or lazy.

Be prepared to supervise the caregiver quite closely once you hire them. Although the ultimate objective of having the caregiver is to give you relief, in the beginning it may take more of your time. You'll have to back them up during rough patches, be available to answer questions, give moral support, all to ensure that they are accepted by your parent and that they want to stick it out.

In my next post, I will write about care managers. In the meantime, if you have questions about any of the above or want more detail on caregivers, please post a comment or email me.

Elder Care: The Link between Stress and Illness

As caregivers for elderly parents, managing day-to-day issues and health emergencies, we are loaded with stress of all sorts. I heard a fantastic interview on my local public radio station this past Sunday (Sept. 7). The interviewee was Esther Sternberg, M.D., a rheumatologist and specialist in neural-immune science. Her latest book is titled The Balance Within.

Much of the interview was spent discussing whether there is a cause and effect relationship between high levels of stress in one's life and illness. In other words, is there scientific evidence connecting the presence of the former with the onset of the latter? Sternberg is a down-to-earth speaker, not a high-fallutin' medical-ese sort of speaker. I was riveted by what she described. It's worth listening to the interview and you can do so on the following website for the program: http://speakingoffaith.publicradio.org/programs/stress/index.shtml

Her book, which was published in 2000, addresses question such as:

• Will stress make us sick?
• Will believing make us well?
• Why do we feel sick when we get sick?
• How does our health affect our moods?

If you're interested to know more about her, her website is http://www.esthersternberg.com/.

Have you ever experienced a situation where you were pretty darn sure that your health was being affected by the stress in your life?

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?

Elder Care: Stress--the first suggestion

In my previous post, Stress and Suggestions #1, I listed 10 ideas for managing the stresses of being a caregiver or care manager for elderly or ill parents. All of the ideas involve putting some (or a lot) of thought into how you evaluate what's happening and then choosing how you wish to respond to the situation. All of the ideas take more energy than having a glass of wine, or going to a movie. The movie or glass of wine is a pleasure, but their benefits are fleeting. The ideas I listed will return broad and continuous rewards for that investment of energy.

Here's the first one from the list: Learn how to speak up for what you need and what you want.
Why is this even important? Whether it's leaving a doctor's office with a clear understanding of a medical issue, or knowing for certain that your parent's laundry will be done regularly, knowing what you want and asking for it is the best way to clean up your To Do list. It's also highly satisfying.

If you can learn how to do this, you'll regain a measure of control. And it's the near absence of control that is often so frustrating and therefore so stress-creating in our situation. Here are a few tips to get started:

First, take a step back and identify what you're seeking. Be honest with yourself here and don't censor what comes to mind. A basic element of managing stress is giving yourself permission to have thoughts that you, or others close to you, might initally react to as socially unacceptable. When you actually mull over those thoughts, you may find that they're not so awful after all. In fact, by not suppressing them you could discover that there's a strong element of reason in them. Or you might learn that there's really nothing you want to do about them.

So, your first inkling of the outcome you're seeking may come attached with a statement like "Oh, I couldn't possibly do that." Or "Gee, I'd like to say that but they might get mad if I do." That's OK. Write down whatever comes to mind, even if you imagine it's impossible for you to do.

Then, write down what action you want to take or what words you want to say. This may sound pedantic, but one of the big bugaboos in speaking up for yourself is not knowing what to say. So, write it down. If you're going to be in a tense situation, work on phrasing that's neutral, non-judgmental, and that has some positives in it.

Now, practice saying what you've written out loud. Practice in your car while doing errands or driving to work. Repeat your key statements until they feel part of you. I'm not saying memorize what you've written. But if you're not accustomed to speaking up for what you want, this is a good way to start to see yourself as someone who does just that. The more you hear your own voice saying things you didn't imagine you could say, the more you'll believe you can speak up for what you want.

Lastly, give it a whirl. This speaking up for yourself business gets easier each time you do it.





Next, pick

Elder Care Stresses and 10 Suggestions for Coping

Stress is the constant companion of those who care for their aging parent(s). There's much that's been written about not forgetting to take care of yourself when taking care of others. I'm not going to repeat it here, but I do want to look beyond the usual advice. I'm not a psychologist or psychiatrist, but even so I think telling someone "be sure to take care of yourself" is a bit glib. Saying "don't forget to take care of yourself" has become ubiquitous. Those who say it think that they're showing empathy, but personally I find it to be an empty statement that doesn't help.

Consider the word itself. What does "STRESS" actually mean? By definition, "stress" means "to subject to force; to put pressure or strain upon."

When you are responsible for your parent's well-being the pressure is continuous and the resulting strain is immense. If you are being continuously subjected to pressure, squeezed in a vise, then the standard of what it means to care for yourself has to change. We all know that we have to take care of ourselves. The question is how best to do so? In my experience, the things that are most restorative are ones that take the lid off the pressure cooker for more than just an hour. They're substantive and long-term. They affect you deeply and offer a chance to take control, something which is sorely lacking in the caregiver's world.

Here are 10 suggestions, some small and simple, others more complex:

1. Learn how to speak up for what you need and what you want.
2. Tell people what's happening with your parents.
3. Dismiss the notion that you can do it all on your own.
4. Contact relatives and involve them in the situation.
5. Know that you'll do everything right and your parent will still get worse.
6. Accept that it's not humanly possible for you to do everything that could conceivably be done for your parent.
7. Pick one thing that you want to thoroughly understand or accomplish and delve into it.
8. Find your center, your core, and listen to what it has to say about yourself and your parent.
9. Figure out one element of your parent's dignity that has been damaged due to dementia or other infirmities and restore it.
10. I've said this before in previous posts, and I'll repeat it a lot in the future: Remind yourself every day that you are doing the best you can possibly do.

Every one of these suggestions is a topic of it own. I'll post on each one in the future.

Can you offer more suggestions?

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?

Elder Care: Mimi's Place Introduction

Thank you for taking a moment out of your busy day to read this. If you've even gone so far as to open this link, I'm honored. First off, I want to make sure I'm not going to waste your time if, in fact, what I'm writing about here is of no interest to you. So, with this first post, I simply want to explain what nudged me to start this blog and how I view its purpose. I'm hoping the way I feel about this is going to strike a chord with you, too.

A year and a half ago, after several emergency visits to her neighborhood hospital, my mother's health and mental well-being reached a level where my sister and I felt she needed the support of round-the-clock caregivers. Was she terminal? No. Was she as independent as she had been a few months earlier when she went on a 2-week cruise by herself? No. She was somewhere in between. She also was 91 years old and who could say what would happen next. There she was in the middle of the seesaw, some days sliding toward "better" and other days decidely on the side of "worse." We never knew which way the seesaw would tilt, so, in effect, there we were with her, with the seesaw itself rather firmly in control of our lives.

As we embarked on what has proven to be a rather wild ride, we had absolutely no idea what we were doing. No idea what was needed to keep our mother as healthy, safe and independent as possible. No idea of what that magical thing called "quality of life" would now even look lilke. No idea where to look for the help we needed, nor whether we were looking for the right sort of help. No idea whether her current health would improve, stay the same or deteriorate. Therefore no idea what we even needed to plan for. What we knew was this:

• Our mother's current lifestyle set up was no longer tenable.
• Both my sister and I were highly capable, organized and well-intentioned individuals.
• We were acquainted with a few trustworthy independent caregivers.

This was our diving platform, and if you watched the Olympics at all these past couple of week, I'll liken our situation to being on the highest platform, except you don't know how to dive. All you know is that you've got to jump off the platform after which you'll hit the water below, where you'll start swimming for dear life.

So, that was the position we were in in May 2007. Since then it's been a crash course in elder care, with lots of ups and downs. In the process, I've learned a huge amount, not just about how to manage my mother's care, but in general. This is proven to me each time I chat with a friend who's in a situation similar to what I was in 18 months ago. The amount of wisdom, of experience, of options that I can now counsel others about astounds me. And none of it came from schools, conferences or websites. It came from hands-on, in the trenches, make mistakes and figure things out, learning.

In talking with others embarking on the dive off the high platform, I found a real desperation for information and assistance, a craving for ideas based on hands-on experience. Clearly these savvy, accomplished people had not been able to find what they're looking for on the web, just as I wasn't. When I spoke with people who'd been taking care of their parents for awhile already, I encountered a sincere yearning to talk about triumphes and mistakes with others who could actively benefit from that information. Most gratifying, each person I've talked to in the past year has had expertise on something related to the subject of caring for our elderly parents, even if they were just starting to get involved in it.

Over these past several months, with my mother in a more settled situtation, I've had a chance to reflect on what's transpired since May 2007. And here's what I've realized. There are tens (maybe hundreds) of thousands of us out there who have reached an extraordinary level of accomplishment in a field for which there is no degree and no credentials. We are absolutely expert in what we do: caring for parents. What absolutely astounds me is that, for most of us, once the need to care for our parent(s) is finished, our incredible amount of expertise will no longer have a purpose or an outlet. And boy that seems like a real shame.

So, that's the purpose of this blog. Let's get going on sharing our collective wisdom and expertise regarding the care of our parents. There are all kinds of us out there: rich, not so rich, urban, rural, middle-aged, single, married, kids of your own, too young to have to do this or old enough to wish you didn't have to. Each in your own way has done an admirable job of ensuring the care of a parent or two. Each in your own way is an expert in the field of "caring for my parents." Why not put that hard-won expertise to good use. Send it out to those who are poised on the high-dive platform about to jump. Make it available to someone in another State who might glean just the nuggest of experience that will help them avoid a pitfall that you had to stumble through alone.

This blog is titled Mimi's Place, after my mother, since it is her situation which has made me into the "expert" I am today. I called my URL Elder Experts, because I firmly believe we all are. And I firmly believe we must share our knowledge and not let it die when our parents die. There are oodles of blogs and websites that list articles, services, care facilities and the like. That's not what Mimi's Place about, though if I find something of special interest I'll share it and I hope you will, too. Rather, I've sent you the link to this blog because I believe you are the Elder Expert. It's your many vital experiences, opinions and wisdom which need to be shared with all of us.

For starters, here are some of the general topics I have in mind, each of which contains subtopics which I won't get into now. Each can spark a dialogue between people who have actually solved a problem, found a solution, or are in the middle of the morass.

• Who's watching the farm: Agencies, private caregivers, contractors, employees and figuring out what's right for you
• Room & Board: Where should Mom and/or Dad live
• Decisions, Decisions: Who's going to make them and are you prepared
• Guilt: Achieving the right outcome
• How do I know what's going on: Communication between all the parties involved in your parent's care.
• Long Term Care Insurance: do you want it; do you need it.
• Family relations: rivalry, burdens, a whole new level of love

I know there are other topics that will interest users of this blog, which I haven't thought of yet. Do you have any of your own? Add them to the list and contribute your own "papers" on subjects that are meaningful to your experience. And forgive the utterly simple format of this blog. I know there are sophisticated ways to create these things, but I'm just starting and have a lot to learn.

Please participate. What can you contribute? For starters, make the circle wider. Forward this link throughout your own network of Elder Experts, to siblings, relatives, friends, your parents, anyone whom you've talked to who is responsible for the care of a parent, or who expects to be. Let's get a conversation going around the country.