Dec 17, 2011

The Accidental Caregiver

You don’t want to be an Accidental Caregiver.

By Cindy Ward

What IS an accidental caregiver anyway? And what does “Accidental” have to do with caregiving? The purpose of these suggestions is to provide a few pointers to help caregivers who find themselves taking care of a loved one almost by accident.

Allow me to be clear: I am not a doctor; I am not a nurse; I am not a social worker; I have never played any of those on TV.

The advice you will receive comes from my experiences in that oldest of learning institutions, the School of Hard Knocks.

Subscribe to the Alzheimer's Reading Room

I am the surviving child of two parents who both died of Alzheimer’s Disease (“AD”) after 10 years of my caring for them. You may be surprised that both of them had AD at the same time. It is possible. It is just unusual, at least for the time being. I firmly believe I am just ahead of the curve. During those 10 years, I made every mistake in the book. This is my attempt to help others avoid those errors and the heart aches that they bring. Caregiving is hard enough when it all goes well. My hope is to help others do more than just survive the experience.

This is where the “accidental” part comes into play. No one PLANS to be a caregiver for loved one(s) with AD or any other reason, for that matter. The hugely prevalent belief is that “It will never happen to me or my mother or father or husband or wife – and if it should by some amazing quirk of fate – well, my family is known for our wonderful behavior and manners. Mom will simply never behave like ‘that.’ I can handle it. And I’ll do so gladly.”

The vast majority of Americans will do just that! They will become caregivers for their loved ones. Most daughters will step up to the plate willingly and lovingly. The catch, of course, is that they have absolutely no idea what lurks in their future as a caregiver.

So when that phone call comes in the middle of the night from your local hospital, it may go something like this: “Hello. This is your local hospital. Your mother is here in our emergency room. She has fallen and broken her hip. She needs surgery right away. You will need to come down here now to sign our paperwork. She indicated you were her family member who would be able to help. You will need to bring all her pertinent information. How long will it take for you to get here?”

And so your caregiving journey will begin. Many times it starts from injuries sustained in an accident of some kind. You will jump in your car and somewhere on that race between the driveway and the ER Entrance, you may realize you don’t know your mother’s social security number, her Medicare number, her Medicare supplement policy number, her list of current medications, why she is taking those medications, or her primary care physician’s name or phone number. You will wonder if she has signed a Power of Attorney for Health Care Decisions.

If you are reading this article and wondering what some of those terms mean, and whether or not your parents even have them, you are letting yourselves in for your first super stressor. So here is my first strong recommendation for all adult children whose parents are alive. If that kind of accident happens, it will be plenty stressful all by itself. If you have to go to their home in the middle of the night and conduct a panicky search for the required information, your stress level will go up incrementally.

Find out the information listed below. Keep the originals in a safe place at your home. It is best to photocopy all of it and keep those copies in a red plastic folder in the seat pocket behind the driver’s seat of every automobile in your family. That way, no matter where you are, if you have to drive to the hospital in an emergency, the information you will need is with you. If you are technically advanced, scan these documents and keep them on a thumb drive with you at all times. However, understand that hospital ER employees usually like paper copies. Doctor’s appointments with new physicians will be much easier because you will have the necessary details, especially as you add to them with each new physician and/or diagnosis. Here are the essentials:

  • Social Security Card
  • Medicare Card
  • Medicare Supplement Insurance Policy Card OR
  • Medicare Advantage Insurance Policy Card
  • If one is a veteran, their VA physician and detailed medication information
  • Primary Care Physician’s name, address and phone number
  • If they have it, their long term care insurance policy number and company

CURRENT list of medications, including

  • Medication name, spelled correctly
  • Dosage
  • Frequency
  • Why it is being taken (many medications have multiple uses)
  • How long has it been taken
  • Doctor who prescribed it
  • When this condition was first diagnosed

Legal documents:

  • Power of Attorney
  • Power of Attorney for Health Care Decisions
  • Out of Hospital DNR
  • Advanced Directives

If there is anything special about your parents, have that information. For instance, if your dad has been in a wheelchair for 25 years, have a clear statement of the circumstances surrounding that condition.

While this sounds like a lot, keep in mind that the information on the first 5 bullets will easily fit on one piece of paper.

Here is my second strong recommendation, and it stems from something that happened in my family. The first time I realized my parents were missing on a road trip, I wanted desperately to call the police and report them missing. They were actually completely lost for 48 hours. I realized there were some specifics I did not know, and so I could not make that call. You will want to add these items to your red folder:

  • Both of their Driver’s License Numbers
  • Automobile Insurance Policy Number
  • Automobile Insurance Agent’s name, address and phone number
  • Automobile License Tag Numbers
  • Make and year model of all vehicles they drive, and the color
  • Height and weight of both parents
  • Current photograph – which is not necessarily the one on their driver’s license

This third recommendation is the one you may find the hardest to accomplish, particularly if obtaining the above information either proves to be difficult because one or the other of your parents refuses to have you “snooping around in their business” or because you can’t bring yourself to talk to them about this subject. It is also the most important. This discussion needs to begin.

The US Department of Health and Human Services reports that 3 out of 4 Americans will need more than traditional health care. That means that 75% of us will need more than just a brief stay in a hospital because of a case of the flu or pneumonia.

As we all age – and baby, we are all aging – it is hard to face the fact that if you live long enough, stuff will start to go wrong with your health AND with the health of your parents. And it may not be the kind of stuff going wrong that kills a person immediately. This caregiving is toughest when it lasts for many years and it is done for people who have always been strong, vibrant and active but are now becoming frail, more belligerent than vibrant, and pretty inactive. There may actually come a time when they can’t be left alone. (How would your life change if you were told by expert physicians that your mom could not be left alone ever again?) If you were surprised to learn that there is such a thing as Medicare Supplement Insurance, you will be shocked to learn that Medicare does NOT pay for long term care. Understand – 6 weeks of recovery from a hip replacement is NOT long term care.

Long term care happens when Mom is just never quite right again after that hip surgery. Her balance is off and she starts falling. She somehow gets lost going to the grocery store, church and the hairdresser – all places she has gone for years. These are all very serious indicators that something is wrong!

If this sort of thing happens to your father first, it will be your mother who becomes her caregiver. Your job will be to watch your mother’s health carefully. If your mother is the first to be affected, your dad will do his best to become the caregiver. However, he will need your help more than he will admit readily. In many instances, the caregiver becomes so stressed during this process that the caregiver dies long before the patient. Or worse, he or she has a heart attack, doesn’t die but is seriously disabled, and now you get to care for both of them at the same time. If one of your parents is already deceased, you are elected by default!

I realize that this may sound like an outlook that says doom and gloom surround us all! That is not my intent. Remember the US Department of Health and Human Resources and their prediction that 75% of us will need more than traditional health care. Then add in these facts: We are all aging, including our parents! As we age, our health typically deteriorates rather than improves. If one lives long enough, eventually one will need help. Accidents happen to people in all walks of life, and usually when they are least expected to happen, as is the very definition of an accident. If it does happen to you and your family, would you rather be prepared or would you rather have no idea what to do next?

Have this conversation with your parents! Thanksgiving, Christmas, New Years Day, Easter, and other holidays are a great time to begin. If you have trouble bringing up the subject, couch it as family planning for emergencies. Tell the story of someone you know at work or at church who had this kind of thing happen. Most of us are in good cheer and everyone is together. It can be a safe time to start the discussion.

One final point. Prepare the exact same kinds of information on yourselves and you initiate the conversation with your own children! We all think that accidents never happen to us.

You don’t want to be an Accidental Caregiver.

I know you don’t want to make Accidental Caregivers out of your kids. Do you?

From 1998 through 2008, Cindy Ward was the primary caregiver of both her parents, both diagnosed with Alzheimer’s. That experience brought her to a career in long term care insurance sales and planning. Mrs. Ward is Certified in Long Term Care by the State of Texas. Following the death of both parents, Cindy spent some time healing, having learned first hand that extended caregiving, especially for Alzheimer’s loved ones, really is dangerous to the caregiver’s health. Cindy is now a Professional Beauty Consultant with Mary Kay Cosmetics, enjoying helping women look great and feel wonderful about themselves!

More Insight and Advice for Caregivers

Original content ardthe Alzheimer's Reading Room