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Long distance caregiving: Part II

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Whether your aging parent lives in a long-term care (LTC) facility or in his or her own home, if you live more than an hour away from them, you’re their long distance caregiver.  What are you doing to protect them, and yourself, during this trying time?

As I mentioned in Part I of this article, published December 3, 2011, bridging the gap between you and your parent can be a difficult task.  Being able to monitor your parent’s day-to-day  life from a distance, especially when a parent has dementia, is a frightening task, and it’s one for which you need suitable support.  What follows are suggestions gleaned from my experiences with my father.

If your parent lives in a long-term facility:

  1. If you haven’t done so already, meet all the department heads entrusted with your parent’s care.  Do what you can to be on record as the go-to person.  If you are your parent’s health care representative and/or financial representative, make sure that the facility has the appropriate legal documents in your parent’s file.  Whether a crisis arises or you simply need to discuss your parent’s condition, making sure the staff know of your legal authority to discuss care will make your, and their, job a smoother one.  If you don’t have those specific legal documents in place, and if your parent is still able to designate you as the approved contact regarding care, do so as soon as possible.
  2. When it’s time for your parent’s care conference, a time when the resident – if able – and care staff discuss the resident’s plan of care, be present by phone.  This is a more common occurrence than you may think.  Share your observations of your parent’s behavior, phone abilities – or lack thereof – and don’t be shy about asking detailed questions about your parent’s care, regardless of how intimate the details.  As your parent’s advocate, you have the right to question the staff’s care plan – and you should.
  3. Meet your parent’s primary care physician.  Be sure that he/she has it on record that you are your parent’s health care representative.  Being able to talk to my father’s doctor to discuss all of his medical conditions, as well as all treatments, including medications, kept me in-the-know and enabled me to keep my siblings informed.  My brother and sister were also a big part of my dad’s life and they were also long distance caregivers.  They told me time and again how appreciative they were that I was on top of dad’s care, and that I was able to keep them informed at all times.

If your parent lives at home and is in the early stages of dementia:

  1. Follow point 3 above because even if both of your parents live in the home, you probably can not rely on them to be on top of their own care.  The parent without dementia is the on-site caregiver, and at his or her advanced age, might not be able to adequately function on his own behalf, forget trying to do so for his spouse with dementia.  If your parent is living alone without the presence of a family member, you have no choice but to nurture a relationship with his/her medical team so that you know what treatment your parent is receiving; what medications have been prescribed; and what long-range care goals should be addressed.
  2. Engaging the help of trusted friends, church members, and neighbors might provide some sort of care continuity as they do drop-in wellness checks of your parent.  If you have people who are able to provide this type of observational visiting, I suggest you utilize web services, such as the following, that can help get you organized: Lotsa Helping Hands, which is “Free, private, web-based communities for organizing friends, family, and colleagues – your circles of community – during times of need.  Easily coordinate activities and manage volunteers with our intuitive group calendar”; or Caring Bridge which is “Free, personal and private websites that connect people experiencing a significant health challenge to family and friends, making each health journey easier.”  Additionally, Caring From a Distance provides resources that are available in your parent’s local area: “Whether you live across-the-world or an hour away, you and your family face special challenges.  Where can you find the local resources they require?  How can you, your family, and friends communicate in an emergency?”

What if the burden is too much for you to bear?

You’re in good company.  If I had been familiar with the services listed above I think my caregiving journey would have been a smoother one.  But believe it or not, this type of caregiving challenge is one that is relatively new in the grand scheme of things.  If you’re losing ground as your parent’s long distance caregiver, it might be time to consider the services of a Geriatric Care Manager.  The National Association of Professional Care Managers is a non-profit resource that can put you in touch with someone who might be able to provide the bridge you’re looking for.

Consider the cost of managing your parent’s care from a distance:

  • time off from work;
  • driving and flying time to your parent’s location;
  • hotel accommodations, food and other travel expenses; and
  • the emotional and physical toll on yourself.

Paying a Geriatric Care Manager to manage your parent’s care, whether he lives at a long-term care facility or in his own home, may greatly pay off in the long run.

Whatever you choose, and which ever direction you take, I hope you will carefully consider the best option for your particular situation.  As I’ve said in past articles, only you know what is the best fit for your family.  Consider all the alternatives and move forward confidently.

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Driving with dementia: the dangers of denial.

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As family members, we are desperate to believe that dad’s driving is absolutely fine.  We try to convince ourselves that even with dementia, dad presents no hazard to himself or others and we even trick ourselves into believing it.  When a precipitating, oftentimes, climactic event occurs, our best-case-scenario dream becomes a nightmare.

My family was one of the lucky ones – those in the very small minority whose loved ones come to their own decision to retire their automobile keys.  My dad decided that he wasn’t comfortable driving anymore and stopped driving cold turkey.  Boy did we dodge a bullet!  I know, however, that more often than not- male or female – your loved one will be very resistant to any suggestion that their driving experience come to an end.  And it’s not always a case of dementia causing the questionable driving behavior.  Declining hearing and/or vision, combined with slow response times, can render just about anyone a hazard to humanity behind the wheel.

Be supportive, not argumentative.

Whatever you do, acknowledge that this function of your loved one’s life equates to independence – going wherever you please, whenever you please.  Imagine being told that you have to give up that freedom.  How would you feel?  Very carefully consider what steps will be most successful in addressing this issue with your loved one.

  • Make serious efforts to preserve the dignity and pride of the person while protecting the safety of that person and others;
  • Involve your loved one in the discussion; by doing so you emphasize that person’s ability to be a part of the solution which might bring about a more successful outcome;
  • Be realistic and honest with yourselves.  Don’t take comfort in the fact that the person with dementia “only drives to the store and back” or “only drives in her immediate residential area.”  Many accidents occur during the shortest and most mundane trips;
  • If you’re the primary point person for your loved one, enlist the help of other family members and friends, and/or a respected professional – such as a doctor or lawyer – to support you in your efforts.

What does the law have to say on the matter?

Just about every state in the Nation has driving restrictions for those who exhibit questionable driving aptitude.  I’m about to provide some links to laws that are applicable in the State of Washington but I’m certain that similar statutes exist in most states.  In Washington Sate, the Revised Code of Washington, RCW 46.20.207 states that the Department of Licensing can cancel any license wherein the driver is not competent to operate a motor vehicle under RCW 46.20.031 which addresses a person’s inability to safely operate a vehicle due to physical or mental disability or disease.  RCW 46.20.305 further details the reexamination process for those who fall within this category.  This is not a laughing matter to be sure.  Not only is your loved one at risk, but everyone within sight of his vehicle is unknowingly being subjected to your loved one’s dangerous driving.  Imagine how you will feel if an innocent person dies or becomes disabled as a result of your family member’s driving.  And there are liability issues to consider.

Who shares liability in these types of circumstances?

The Western and Central Washington State Chapter of the Alzheimer’s Association has much to say on this matter.  You can request and receive, free of charge, their booklet, At the Crossroads: Family Conversations about Alzheimer’s Disease, Dementia & Driving.  In a separate article, Seattle elder law attorney, Janet L. Smith outlines our legal obligations as family members of those who drive with dementia.  Are you letting your wife or husband drive with diminished abilities?  According to this article by Ms. Smith, because Washington is a community property state, the marital community is generally responsible for any injury or damage caused by either spouse.  This article further states that an attorney-in-fact, acting under a Durable Power of Attorney, opens himself up for possible legal action should the impaired driver cause significant damage to another.  In both of these circumstances you simply need to ask yourself if you feel comfortable enough to take that risk, knowing that the driver is unfit but taking no action to prevent that person from driving.  It all boils down to a matter of conscience, and a matter of moral obligation.  Only you can decide what type of risks you’re willing to take and/or the degree of responsibility you’re willing to shoulder.

Consider the frequency and severity of these signs and symptoms of dementia-impaired driving:

  • inability to locate familiar places;
  • failure to observe traffic signs, perhaps because they may no longer understand what they mean;
  • making slow or poor decisions in traffic, such as slow response times, and making incorrect responses to traffic conditions;
  • driving at an inappropriate speed – usually too slow;
  • becoming angry or confused while driving.

Soft ways to eliminate driving opportunities.

  • Arrange an independent driving evaluation through the local AARP or your State Department of Licensing;
  • With the help of your loved one, assign driving responsibilities to family members, neighbors, and church friends;
  • Take your loved one on errands that she needs fulfilled and make a date of it – grabbing a cup of tea somewhere, or combining the errand with a lunch opportunity;
  • Plan alternative transportation such as public transportation organizations similar to those found in Washington State: Access VansCatholic Community Services, National Volunteer Caregiving Network, and Senior Services, to name a few.

Drastic ways to eliminate driving opportunities that should only be employed as a last resort:

  • gain control over access to the car keys;
  • disable the car by removing the distributor cap, a battery cable, or the starter wire;
  • arrange to sell or donate the car;
  • secure a letter from a physician declaring the person incapable of safe operation of a vehicle and present it to the Dept. of Motor Vehicles/Department of Licensing.

I can not emphasize enough how important it is to make sure that you’ve assembled a team of well-intended friends and family members to fill in the transportation gaps.  Helping Mom and Dad, or your spouse, maintain an acceptable level of independence will go a long way toward softening the blow of losing the ability to get behind the wheel on their own.