The 7-year-old child says, “I don’t want to visit Grammy anymore. She doesn’t remember me and she scares me!”
This is a major dilemma with adult children whose parent has dementia. It’s difficult for the adult to reconcile their parent’s disease progression – and they have a fairly comprehensive understanding of the disease that is robbing them of their parent. Now imagine a child’s inability to comprehend the disease. All they know is that Grandma seems upset when the child visits and on top of that, no longer recognizes him. When one considers that adult children sometimes dread visits with their mother or father with Alzheimer’s or other dementia, it seems easier to just let those visits slide for the younger members of the family. My daughter was an adult when her Grandpa was diagnosed with Alzheimer’s. I can only proffer a guess at what I might have tried in order to make her visits with him a comfortable experience.
Should parents force their children to visit the person whom the child has started to fear?
Forcing anyone to do anything isn’t always the best strategy to follow. In these circumstances, it could almost be considered cruel. My grandparents lived in a different country than my family. Us three kids saw our grandparents maybe six times before they died. Having the opportunity to live near an older relative would have been a novelty for me as I’ve always envied those who grew up with Grandma and Grandpa nearby. With that said, however, I acknowledge that close proximity alone in this situation is not a sufficient motivator.
How can grandchildren still maintain a relationship with their Grandma and Grandpa?
The distracted visit – visiting but doing his own thing as well. If the parents are able to provide some sort of distracting activity while visiting Grandma, the child might get more accustomed to their grandparent’s behavior. The child casually observes how mom and dad interact with Grandma – while still being able to watch their favorite video or play with their hand-held electronic game – and gradually feels more secure being there. Over time, but certainly not immediately, he may realize that Grandma is no longer someone to be feared and may attempt his own interaction with her.
Parents visit without the child and provide engaging updates to their child when they get home. Parents can keep their child connected by telling him the funny/cute thing Grandma said that day when they visited and also making the child aware of the positive things that are happening in Grandma’s life to balance out the overwhelming negative that pervades it. Who knows, this reporting tactic might actually lead to the child’s “distracted visit” next week. Curiosity may be just the ticket that gives the child the desire to see Grandma.
There’s SO much more that needs to be said on this topic.
I haven’t even addressed the issue of early-onset dementia that thrusts young children and teens into an extremely challenging relationship with a parent whose disease robs their children of the guidance that their parent might normally provide during their adolescence. What can you, the Baby Boomers and More Blog audience, contribute to that very unfortunate, and ever-increasing reality, in today’s world?
I’m very much looking forward to what you can add – successes and failures – that will benefit those of us searching for advice and guidance.
What do you want to read and comment on? I thoroughly enjoy this blogging experience but it’s not satisfying enough for me to have a one-way written conversation. My family would be the first to say that once I get going, it’s hard to shut me up. (As of March 2016, I’ve posted 700 articles.)
But I want to enhance my own Baby Boomer experience with your wisdom, advice, successes, even failures. It’s in those practical experiences that we grow the most.
So I sincerely covet your input as to what would draw you to my “Baby Boomers and More” Blog more frequently. What topics interest you enough that you would provide comments and even contribute your own articles that I’ll press/link to my own Blog site?
Truth be told? This is not just my site – it’s out there for everyone. I hope you’ll be candid and honest with your input. Bring it on – I’m good and ready for your Baby Boomer Blog ideas.
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:
- 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.
- 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.
- 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:
- 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.
- 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.
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.
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 Vans, Catholic 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.
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.
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.