Tuesday, September 30, 2008

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.

Sunday, September 21, 2008

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.

Saturday, September 13, 2008

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?

Wednesday, September 10, 2008

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..

Tuesday, September 9, 2008

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.

Sunday, September 7, 2008

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)
--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.

Friday, September 5, 2008

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?

Wednesday, September 3, 2008

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

Monday, September 1, 2008

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?