Numerous authority figures are entrusted with your loved one’s care – most of them a fraction of their age. If you can’t be a physical presence for your loved one what will you do to bridge the gap between physical absence and an effective long distance presence?
My father was diagnosed with Alzheimer’s at the age of 84 and died in 2007 at the age of 89. By the time of his diagnosis he had been living in a Continuing Care Retirement Community (CCRC) for seven years. His wife, my mother, died a month before they both were to move to this CCRC located in Oregon state. My mother was truly looking forward to the move with my dad but on September 24, 1994, she was granted the wish that she had thrown into the universe many years earlier – that when her time came, she wanted to die in her sleep. My father still moved to the Oregon CCRC because at the age of 77, he knew he still had a valid reason to move there. Both he and mom didn’t want to be a burden to us three children, so moving into a retirement community that would meet all the needs of his aging body and mind was dad’s gift to us.
A few years after my mother’s death, dad married a resident of the CCRC and they had a wonderful late-in-life marriage. Dad’s wife, Barbara, died from complications of Parkinson’s in 2003 so once again, dad became a widower, but this time his biggest challenge was that he was in the early stages of Alzheimer’s disease. He was still able to live semi-independently in an assisted living apartment at the complex and he was able to perform his activities of daily living (ADLs.) Of us three adult children, the job of being dad’s caregiving team leader quite naturally fell to me. I had worked in the senior care industry for several years so I was quite familiar with caregiving lingo and body frailties, not the least of which was Alzheimer’s and other dementia.
Initially, the miles that separated us wasn’t all that challenging. He was still active, was fully capable of getting himself up in the morning, taking his medications, getting to the dining room, etc. Us children would call dad frequently – and he still had the ability to call us – and we continued our visits throughout the year and although his dementia was obvious to us, we knew he was in good hands and that he was functioning quite well. The staff was very attentive to him and if they had concerns, as his health care representative and financial power of attorney, they kept me abreast of the latest, the greatest, and the ever-increasing not-so-greatest.
The not-so-greatest happened one frightful evening. Dad called me telling me that he felt very agitated and he couldn’t stop walking around his apartment; he couldn’t settle down; he didn’t know what was going on. I asked him if he had recently taken any medication and he replied, “Just some cough syrup.” “How much did you take?” “I don’t know.” So while I had my father on my home phone line, I called the front desk of the facility on my cell phone and told them that my father was having an emergency in apartment #94 and a nurse needed to get there immediately. I kept my dad on the phone and told him that a nurse was on the way to see him and that he would be taken care of very soon. The nurse arrived quickly, and the emergency was averted.
Bottom line? We now knew that dad was no longer capable of managing his own medications. He took way too much cough syrup that evening and it caused his heart to race, resulting in extreme agitation. This precipitating event was the start of his noticeable decline and medication management became the first ADL for which my dad needed assistance.
The above example barely scratches the surface of what many of you are dealing with. Your long distance eyes and ears seem thoroughly ineffective and you’re concerned about your loved one’s well-being. There is hope for the long distance caregiver. It’s not the same as being there, but this hope somewhat bridges the long distance caregiving gap. Part II of this article, published December 4, 2011, addresses some practical steps you can take to help in your caregiving journey.
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.
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.
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 Vans, Catholic Community Services, National Volunteer Caregiving Network, and Senior Services, to name a few.
- 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.
STATEMENT: Carol’s having a little problem with her memory.
Initially this might be an accurate statement. Two years later, it’s a euphemism that doesn’t benefit anyone, the least of which is Carol.
Imagine denying a person’s cancer diagnosis. There’s no need to treat it. I just have an uncontrolled division of abnormal cells in my body. It’s not that bad. It’s early in the diagnosis anyway and I’m not even experiencing any major symptoms. I’ll do something about it when it really gets bad. Ill-advised, right? Most people would not follow that path. But Alzheimer’s disease, and other dementia, are no less serious. As a matter of fact, cancer isn’t always fatal, but Alzheimer’s is. There is no cure and no potential for one at this time.
Most people would spring into action upon receiving a cancer diagnosis: learning as much as possible about it; taking measures to curtail the cancer’s effects on their lives. The sooner one does something about it, the better the chances of successful treatment. For some reason, when a person receives an Alzheimer’s diagnosis there’s a self-inflicted stigma attached to it; as if the afflicted person brought the condition on themselves. This is an unfortunate perception and one that should be put to rest. Whereas clinical depression or mental illness used to be a taboo subject, those conditions are now more readily accepted in the public eye. Alzheimer’s must be brought out into the open, especially as it affects you or a loved one.
THREE MAJOR REASONS WHY ONE SHOULD ACT ON AN ALZHEIMER’S DIAGNOSIS:
- The window of opportunity to start early drug therapy can be a very narrow one.
The time to seek medical assistance is when symptoms become fairly consistent and more than just a “senior moment.” A thorough medical exam should be conducted to rule out any cause other than dementia. Some medical conditions and/or medication usage can mimic cognitive decline. All the more reason to act early to rule out what might be a readily fixable temporary condition.
If after the thorough medical exam a cognitive workup is warranted, you’ll have a defined cognitive baseline and can start treatments and/or make adjustments in the household that will minimize the disease’s impact on your lives. Now you’re in the driver’s seat, regaining some amount of control over the disease.
- Those close to you need to be informed.
As mentioned in an earlier post, “Caregiving: The Ultimate Team Sport” (article located in the “Caregiving” tab) you can’t assemble a care team if you’re ignoring the needs and challenges facing you and your loved one. You’ll be amazed at the relief you’ll feel knowing that you’re not battling this disease on your own. Let your family and close friends know early on what you need from them. Partner with them to become a formidable force upon which you can rely. You need support and it’s available from several resources.
- Join a local Alzheimer’s Association support group.
The Alzheimer’s Association lists support groups in most geographical regions that should prove extremely helpful to you. Type in your zip code in the “Find Us Anywhere” upper right area of their website and you’ll be connected with the Chapter located nearest to you. Within that local Chapter you’ll then be able to search for a support group by typing in your city, county, or zip code. You’ll find groups for family members who are attempting to support their loved one who has received a dementia diagnosis. You might also find support groups for patients who are in the earliest stages of their illness. Both groups can do much towards providing you with confidence and hope when none can be found. These groups become a practical resource into which you can tap to benefit from others’ experiences in managing the disease. If by chance there is no nearby Alzheimer’s Association Chapter, check with your local hospitals, community colleges, senior centers, and the like as they oftentimes hold groups that are facilitated by trained professionals. These alternative groups are very adequate options when no other groups are available.
If you or a loved one has received an Alzheimer’s/dementia diagnosis, you’ve just entered one of the most difficult chapters of your life. You deserve all the support and medical attention you can get. Ignoring the condition doesn’t make it any less real so please take the steps needed to manage this stage of your life effectively.
The next article in this “Understanding Alzheimer’s & other dementia” series is : “Driving with dementia: the dangers of denial.”
There are diagnostic tools in place that try to make sense of the symptoms of Alzheimer’s and other dementia; some are conclusive, while others are simply an educated guess because knowledge of this disease is evolving day by day in the medical and scientific fields. And for certain, no two people with the disease have the same manifestation thereof.
Whether or not an actual diagnosis is presented, you as family members, or perhaps as the patient, are struggling with this new reality and are attempting to carry on as normally as possible.
In the days ahead I am going to submit four articles addressing some of the challenges inherent with this disease. I am not an expert – I have no PhDs and no medical degrees – but what I do offer is advice gleaned from my own practical experience and from that of those with whom I have been fortunate to be acquainted.
The four articles will be as follows:
- Denial: Roadblock to better health and better care.
- Driving with dementia: the dangers of denial.
- Long distance caregiving (provided in two parts.)
- Preserving your loved one’s dignity.
As Charles Darwin once said: “It is not the strongest of the species that survive, nor the most intelligent. It is the one that is the most adaptable to change.”
I hope that ALL of us will have something to offer as these four articles are presented. I covet your input and hope that you feel free to provide it.
Bob is old. He’s played golf every day since his retirement in March.
One day he arrives home looking very downcast. “That’s it,” he tells his wife. “I’m giving up golf. My eyesight has gotten so bad that once I’ve hit the ball, I can’t see where it lands!”
His wife sympathizes. As they sit down for dinner she makes a suggestion: “Why don’t you take my brother with you and give it one more try.” “That’s no good, ” sighs Bob, “your brother is a 103 years old!” “He may be 103,” says the wife, “but his eyesight is perfect.”
So the next day, Bob heads off to the golf course with his brother-in-law. He tees up, takes an almighty swing and squints down the fairway. He turns to his brother-in-law. “Did you see the ball?” “Of course I did! I have perfect eyesight,” says the brother-in-law.
“Well, where did it go?” asks Bob.
Because of your flexible work schedule, you are the designated driver when it comes to taking Mom and/or Dad to doctor appointments. Well, the older your parents get, the more feeble their bodies, and the more potential for aggravating factors such as cognitive decline. What should have been a 2-hour outing has become an all-day event.
I’m quite certain that many of you reading this article have struggled in your efforts to drive Mom or Dad to their many doctor appointments. Getting Dad into the car is one thing, but getting him out? My goodness – through no fault of his own, he’s forgotten the process and you don’t have the strength to lift him out. With Dad’s cognitive decline, his understanding of what it means to sit or stand on command has decreased. The ol’ “Ally Oop!’ maneuver or the “1-2-3 Stand!” command just won’t work any more. What’s a person to do when you are not able to exert the strength to facilitate such an action on your father’s behalf?
When I visited my father in the long-term care (LTC) facility in which he lived, my goal was to get him out of the facility as frequently as possible. I took him on picnics, on walks around a park’s perimeter, up and down the aisles of a supermarket – anything to provide a change of scenery for him.
As my father’s dementia increased, however, these outings became less and less practicable. I was not blessed with a strong back so my attempts to lift him out of the car or onto a park bench were met with horrendous failure. I grieved the cessation of these activities but I just couldn’t manage my father’s body any more. And not being able to go on these outings really curtailed the enjoyment of our visits together.
Had I lived in the same town as my father, another person could have accompanied me who was capable of assisting with the transfer of my father in and out of the vehicle. Unfortunately, my father lived in Southern Oregon and I live in the Seattle, Washington area so calling upon a friend to go along on these outings was not an option for me. If you, however, live near your loved one, do yourself, and your loved one, a favor by bringing another family member or a friend who has the ability to assist with the mechanics of transporting Dad on outings. Not only will the physical assistance help, but you’ll have someone else with whom to visit when the conversation with Mom or Dad lags due to cognitive decline – or hearing difficulties.
Another benefit of having an additional person with you is that you are introducing your friend to the unavoidable process of aging. This may sound like a negative benefit, but truly, it is not. You will open your friend’s eyes to the future that awaits us all while also providing him with a lesson on how to enhance the life of someone whose world has been drastically reduced in size.
See? It’s a win-win-win situation! You receive the help you need, your parent gets a change of scenery, and your friend learns a valuable lesson.
I want to encourage you to check into local resources that provide suggestions on how to be the best caregiver you can be. For example, your local chapter of the Alzheimer’s Association is a very valuable resource. They have numerous articles within their website and a 24-hour Helpline 1-800-272-3900 to ease you through this process. There’s one thing on which all of us caregivers can agree – we can’t do it all by ourselves. Reach out to receive the assistance that you so richly deserve, and that others are willing to provide.
When an adult child’s earlier relationship with a parent has been wrought by abuse, how does the child manage to provide care to this parent who reigned verbal, physical, and/or sexual abuse upon him/her?
- Is it possible? Yes.
- Is caregiving required of an adult child in this circumstance? No.
- Is the child wrong to turn his or her back on a parent requiring care and attention? Absolutely not.
Every individual’s situation is unique due to the extreme nature of this type of family dysfunction. There truly is no textbook answer that fits each circumstance. Not only is the situation unique but we’re talking about emotions – and how one deals with those emotions. We’re talking about the balance of how the previous harm has been handled and whether or not contact of a caregiving nature may prove newly damaging to the adult child/victim. For the purposes of this article, we will assume that the adult child has decided to participate in her abusive parent’s caregiving. CAVEAT: Anything I offer in this article is not based on personal experience, but rather, experiences that have been relayed to me through my work with adults who are also caregivers for their parent. I’m not an expert, I’m only an observer. I covet any input that my readers may be able to offer.
The caregiving well is shallow.
More likely than not, the well from which the child can draw may be very shallow. If the adult child has chosen to keep her distance from the abusive parent for many years, being suddenly thrust into one of the most difficult jobs she will ever perform could be a next to impossible task. Let’s say that she has decided to give it a try but she has been wise enough to set up an escape route that she will follow when the going gets tough. I don’t necessarily mean an actual, physical escape route. Rather, she has established the upper limit that she will bear should matters get out of hand emotionally or physically. She makes a commitment to herself that sets a comfortable threshold after which she will walk away, guilt free, knowing she made a valiant effort. She is strong enough to acknowledge that at some point she may need to cease all caregiving efforts.
As I mentioned in a September 2011 Blog entry, “Deathbed promises and how to fulfill them,” (found in the Caregiving category of this site) even adult children with a fabulous relationship with their parent struggle greatly in their caregiving efforts. Whether you end up being a hands-on caregiver (providing the care in your parent’s home or yours) or you find yourself as the primary family contact with the staff caring for your parent at a long-term care (LTC) facility, you are pulled into the intimate aspects of a parent’s life and it is not an easy role in which to function.
Feeling obligated vs protecting oneself.
Too often, we do things out of a feeling of obligation rather than heartfelt compassion. In the situations outlined above, obligation will either be the only thing that places you in the caregiver role, or it will convince you that you’re not emotionally available to walk down that rut-filled path. I am an advocate for vulnerable adults – I live by that mantra – but in this situation I feel that the person needing the most advocacy is the adult child who still struggles with the effects of a past abusive relationship with a parent. If you are not able to provide the caregiving, please know that there are others who can do so in your place. You don’t have to be “it” ‘in this situation, and having someone else step in could very well be the best caregiving scenario for you, and your parent. If you ever find yourself in this role, please do not act alone. The community around you: churches, local government health service organizations (such as that found in Washington State), organizations that protect the abused, are an absolute required tool in your toolbox to be an effective caregiver, and an emotionally protected adult child.
Anyone out there who has been in this role or is currently in this role of taking care of an abusive parent?
Your input is very valuable and could very well help those struggling with this scenario. If you feel strong enough to share your story you have my thanks for opening up on this Blog.