long distance caregiving
A Novel about Family
Although this book’s subject matter focuses on caring for family members with Alzheimer’s disease or other dementia, it is also a story about the way we address the challenges in our lives, and how resilient we truly are when doing so.
I was my father’s primary caregiver during his transition from this life to the next. It was one of the most rewarding experiences of my life. This novel spotlights my experiences.
Long distance caregiving: Part II
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.
Long Distance Caregiving: Part I
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.
Understanding Alzheimer’s & other dementia
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.
Do you feel as though you don’t visit your loved one often enough at the long-term care (LTC) facility in which they live? Try to acknowledge that guilt is a feeling that may not necessarily reflect an accurate reality of how attentive you are towards your loved one.
The local caregiver.
Many people have expressed their concerns to me that they’re just not doing enough for their loved one who lives in a LTC facility. Even when a caregiver visits Mom several days a week, the caregiver still feels guilty for not making more of an effort to be there for her.
Guilt is a valid feeling – I believe all feelings are valid – but the feeling of guilt may not accurately reflect what is going on. Let’s face it, most of us are hard on ourselves. The old adage, “we’re our own worse critic” came about resultant from generations of people who unfairly beat themselves into the ground.
At a recent gathering I attended, a woman expressed how guilty she felt for not visiting her mother more often than she thought appropriate. Another person, also a caregiver, suggested that this person ask herself whether or not she felt she was doing the best she could in this situation. “If you are, then perhaps your feeling of guilt is based on emotion rather than reality.” Whether five visits a week or one visit a month – if that’s the best a person is able to do, then it’s sufficient.
Some of us caregivers simply need to cut ourselves some slack. Even when the loved one we’re visiting has no concept of the passage of time and is not able to discern whether they’ve been visited as recently as the last hour or as long ago as last year, we still berate ourselves for not being there more frequently.
Caveat: I need to add that even if your loved one doesn’t a) recognize you, and b) can’t quantify the passage of time, you are still a wonderful addition to that person’s life. No staff caregiver can take your place when it comes to providing a loving presence for your Mom who lives in a facility. Just being there with a smile, a hug, and speaking words of compassion can do wonders towards brightening Mom’s day.
The long-distance caregiver.
My biggest role as a caregiver was that which I performed long distance for my father who lived in a dementia unit in a Southern Oregon assisted living facility. I felt like I was doing something truly valuable for him while I was there but as soon as I boarded the plane for Seattle the guilt enveloped me. Usually, the first night of my return was spent crying because I felt I had been impatient with him, or I acted flustered when I had to answer a question that my father had already asked me no less than two dozen times prior. I relived every moment of my visit, criticizing this and that about what I did, or didn’t do. I was a wreck. I had to talk myself into believing that dad did have a good time and dad was genuinely happy to see me, and by golly, I didn’t do that bad of a job as a caregiver daughter.
I could then relax knowing that he was being well-cared for in my absence; my visits augmented that care, and I could rest on that fact rather than falling back on my guilt. The NY Times article, Being There and Far Away sheds some light on the long distance caregiver’s experience. I hope you’ll take the time to read the article as I believe it will touch on some topics that all caregivers may experience.
As I mentioned in my Blog entry, Deathbed Promises and How to Fulfill Them take a deep breath and shed the mantle of guilt you’re wearing. It doesn’t do you any good and it gets in the way of you being the best caregiver you can be. Cut yourself some slack and don’t be so hard on yourself.
Do your best – that’s all that is required.