Grief is a multidimensional response to any loss. Loss is all around us–whether it’s one’s job, losing a home through foreclosure, experiencing a significant decline in health, or losing a loved one through separation, divorce or death. Grief work is the psychological process of coping with loss. It requires time, expression of feelings and caring support to transition to a new normal.

My family is grieving the death of our mother. She died two months ago at home where she wanted to be, surrounded by the love and companionship of family. Mom received expert palliative care to relieve symptoms and minimize suffering. I’ll talk more about that in future posts. She was just three weeks shy of her 90th birthday. Mom mentioned in early February that she didn’t think she’d make it to her birthday. Even though she wasn’t acutely ill at the time, I’ve learned from past experience to take such statements seriously.

She had become progressively more frail this past year; she and we knew that her life expectancy was limited. Our family members have experienced anticipatory grief off and on for some time. I personally believe that it helped me prepare for the actual experience of loss following her death. While there were tearful times with her and our family, I experienced a real sense of peace during the last five days of her life, through the funeral home visitation and her funeral. I know that much of my inner peace was related to my faith and spiritual connectedness. But I suspect that had I not experienced the feelings of anticipated loss several times before, it would have been more distressing to me, especially since I was also the primary caregiver.

It definitely is a personal journey with its own time table. As with dying (except in instances of sudden death), grief is a process rather than an event. We know that it is not something to “get over” or “put behind us.” There is no substitute for feeling the feelings. It has been said that one is never old enough to lose a mother. I tend to agree.

Meanwhile, we are adjusting to a new normal–life without her physical presence–and transitioning to a relationship in memory. We are blessed to have so many loving relatives and friends to support and encourage us.

If you have lost a loved one, I invite you to share any insights and comments from your own journey that may benefit others.

Mountain Stream in Colorado

Mountain Stream in Colorado

The advance planning for our recent trip was time and energy well spent. We did all that we could to prepare; then we just trusted in God’s providence that all would be well…and it was. We encountered a few challenges, but nothing that couldn’t be handled. It was a very special and memorable trip for both my 89 year-old mother, and my disabled sister.

The best part for me, was witnessing the wonder and delight they experienced. The weather was perfect. The food was great. Mom and I enjoyed a new entrée–mango duck quesadillas. Our hosts had also prepared, and we didn’t want for anything. It was poignant seeing Mom embrace loved ones whom she hadn’t seen in years (and likely won’t see again). They talked and laughed like youngsters. My sister instantly bonded with the daughter of a family friend, a woman she had never met, who also suffers with chronic pain. Her ministry to this kindred spirit was most valuable and touching. It came at a vulnerable time when she desperately needed to hear from someone who has been there and copes with pain every day (my sister), that things can turn around.

The scenery and sunsets were awesome. My mother has been the family photographer for years. It seemed like she wanted me to take a picture of everything! Now she is assembling a photo album (sorting through more than 200 prints). She has enjoyed showing them to family and friends, and can savor the memories whenever she wishes.

Mom did have a checkup with her physician before traveling. She has shortness of breath (SOB) with exertion, and her blood pressure is sometimes labile–too high or too low. She got a green light; her resting oxygen saturation on room air was 96% and her hemoglobin was normal. An important consideration, since we were going to the mountains. She had just finished taking antibiotics for an urinary tract infection and was feeling a little weak.

Mom needed to rest (lying down) a couple of times during the day. I did Healing Touch for her once or twice each day and used therapeutic-grade essential oils. These holistic measures did help keep her energy balanced, her pain and other symptoms controlled. We did take our automatic blood pressure cuff along. Somewhere along the way, Mom lost her customized aromatherapy inhaler I created as supportive care for hypertension and/or fleeting chest pain. We discovered that the 60 milligram sublingual coenzyme Q10 (Q-Melt®) that she sometimes uses, smoothly lowered her elevated blood pressure to a desirable level within 45 minutes and got rid of her headache.

Our hosts rented a transport chair for Mom’s use. It is lighter and more portable than regular wheelchairs. We liked it so much that we purchased one when we returned home. It’s easy to fold up and put in the car…and I can handle it myself. The only drawback we’ve found is that you can’t push it over crushed rock; the wheels are too small to provide adequate traction.

Both airport experiences were satisfactory. It was interesting to see how many travelers require wheelchairs. There was a line of people waiting for them! Both my mother and sister needed wheelchairs. So of course, we were separated going through the security screening. That caused a little bit of anxiety for me and them. The alarm did go off because of my Mom’s hip prosthesis. Being “patted down” was a new experience for her. She did remind them that she was hard of hearing. The transport personnel were uniformly helpful and personable. It takes quite some time to get two disabled travelers from curbside check-in to the gate, so they were most deserving of their tips.
We didn’t have any appreciable delays; our flights were direct. For the most part, there was little turbulence. Both my mother and sister had used ginger root capsules to help prevent motion sickness. My sister had brief nausea after the plane landed. It quickly resolved within a minute or so, with inhaling peppermint essential oil.

My sister, who has CRPS1/RSDS, did have a pain exacerbation or crisis during the trip. We were out in public and she ended up having to lie down on the sidewalk. Her leg and foot were contorted in spasm; the searing pain shot up from her foot to the top of her head. Sweat poured off her body; her leg looked mottled and purple. She was crying out, though she tried to stifle it at first. Even though time seems to stand still for the person experiencing such intense pain, she was feeling much better within twenty minutes and we were able to travel again. A few people inquired as to whether we needed assistance. I thanked them for their kindness and assured them that I was a health professional, used to managing her symptoms.
Once again, prayer and holistic modalities turned things around. We have found that several drops of therapeutic-grade Roman chamomile applied neet, “melts away” her spasm. We reapplied it once; her spasm was completely gone in under seven minutes. We also used a Young Living Essential Oil blend, called AromaSeiz on her head, neck, arm, and leg. She carries it in a roller ball container for ease of application. Then I did Healing Touch which always soothes her, physically, emotionally, and spiritually. Of course, we also used her prescription liquid pain medication a couple of times, but it takes 60-90 minutes to obtain a full therapeutic effect.

The day of our return trip seemed very long. We didn’t get home until about midnight. All of us needed a few days to rest and recover. It would have been nice to have made this trip a year or two ago, when Mom was more mobile and had more stamina. Even so, it was still very worthwhile and I wouldn’t hesitate to do it again. I encourage caregivers who are contemplating traveling with their elderly and/or disabled care recipients, to do so, if at all feasible. It can be one of those special joys of caregiving.

Freshly Picked

Nature provides many object lessons for us, if we but observe and reflect on them. Yesterday, I decided to pick raspberries from our organic garden.  The experience was personally enriching because of all the symbolism that came to mind while doing this simple, yet satisfying task.

Perhaps, you too, have observed life lessons while being outdoors, enjoying nature. Whether working or playing, when we are fully present, we are open to insights and moments of pure pleasure. Such experiences often enhance our spirituality. And, I have to believe that it can only make our caregiving better. Here are a few of my observations and reflections while picking raspberries.
  • Be prepared. From previous experience, I knew that I needed to protect my arms and legs from being scratched. I put on a long-sleeved shirt and wore full-length pants. It was mid-afternoon, so I wore a wide-brimmed sunhat, as well.
  • Timing is everything. Yes, I was sweating in the afternoon sun, but it was the best time of day to avoid being mosquito bait. It was much more pleasant than what I had previously experienced in the cooler early morning or evening, for that very reason.
  • Expectations have a way of being realized. My sister picked berries the day before. She suggested that I wait another day or two, to make it worth my while. But I expected to be rewarded with enough berries for Sunday dinner and to send home with a visiting relative. As you can see from the picture, we had plenty. 
  • Act–just do it. Like many things in life, it often doesn’t matter where we begin. Just starting where we are and doing it, is what counts. I have to remind myself of that whenever I write, clean, or file papers.
  • It often helps to stand back and change perspective. Many of the berries were not apparent until I stood back and saw them from a distance. Likewise, many of them were lower on the bushes than I would have expected.
  • Stay in the present. A few times I tried to reach too far forward and almost lost my balance. It was a good reminder to take small steps and reach within my grasp. It’s an important concept in self-care. But a little stretching was beneficial and rewarded.    

This article was written by Alan Stanford, President and CEO of My Health Care Manager and reprinted with his permission. My Health Care Manager is a national service that helps seniors and their families manage the complexities of older adult life with unbiased professional guidance related to health and independence.  www.myhealthcaremanager.com 

Caring for an aging parent or loved one is an incredibly important, yet often complicated task, especially when there are thousands of miles separating the caregiver (distant caregiving) from their parent. There are millions of family members who will need to administer care for an aging parent at some point, but don’t have the knowledge to do so properly and live many states apart from the parent. When health problems with an elderly person start, it’s often a long, up-hill battle.

Here are some top tips that will make life easier for the busy caregiver:

1. Have the difficult conversations about the future (living options, financial matters, advance directives, etc.) early on–BEFORE there is a crisis. Family conversations about health, finances, where to live and plans for the future are not easy. The needs of aging parents can distress adult children who are accustomed to their parent being strong and self-sufficient. This shift can also be difficult for parents to admit or accept. However, postponing these discussions prevents an honest exchange of feelings and fears, which can create more anxiety than simply talking about the issues. It is never too soon to talk about concerns in order to reach a shared understanding of preferences and options. Special family meetings are often some of the best methods for facilitating these conversations.

2. Hire someone else to do the “work” (running errands, grocery shopping, dry cleaning, etc.). Most caregivers these days are balancing a full-time job, attending PTA meetings, helping with their children’s homework and giving rides to sports and other activities, all on top of trying to care for an aging loved one. Hiring a family friend, neighbor, church member or other trusted individual allows the caregiver to spend quality time with their parents and not feel that the little time the family has together is consumed with performing endless tasks and chores.

3. Help your parents maintain close ties to the community. Older adults should remain active in the community and their adult children can help them find opportunities to maintain close relationships and form new friendships. A recent Harvard study found that people with close relationships or strong ties to their community have less cognitive impairment than those who are ‘loners’ or socially isolated.

4. Help your aging loved ones follow Harvard’s top tips to be proactive about fighting dementia and memory loss. Alzheimer’s disease is a world of uncertainty for both the person affected and their family members. Alzheimer’s and dementia affect each person differently. Some people have personality or behavioral changes, while others lose brain functioning at a faster rate. The bottom line is their world becomes different. The Harvard Men’s Health Watch* offers advice on ways to help reduce the risk for age-related memory loss, including getting more physical exercise and improving the diet.

5. Be alert to early balance problems or difficulty getting up from furniture. Studies show that more than 700,000 elders are hospitalized each year for injuries suffered inside the home. A typically safe haven for most can very easily become a life-threatening environment for the elderly. Basic everyday activities, such as climbing stairs, changing clothes and fixing meals, can actually cause serious (and sometimes fatal) injuries for those over the age of 65 living at home. Contact a physician for a Physical Therapy referral. This measure can help prevent future falls and resulting injuries and/or hospitalizations.

6. Be alert to the potential dangers of driving–especially for older adults with cognitive impairment, slowed reaction times, or other conditions. If there is a concern that an aging parent is endangering him or herself, or others when behind the wheel, the caregiver should ride along with them to assess the potential hazard. If the situation isn’t safe, then it’s time to get involved. Suggest that one day a week, a family member make arrangements for “their lunch with mother,” and include weekly errands. This way, the parent is offered the choice, “Do you want to drive, or do you want me to drive?” In instances in which someone is not available, a companion could be arranged. The companion could offer to drive or let the older adult have the option of driving…and the option is imperative. More often than not, older adults elect to have someone else take the wheel.

7. Help your aging loved ones fill their empty hours with volunteer work or other meaningful and enjoyable activities. Whether it’s volunteering through a church or hospital, playing golf or bridge, or spending time with grandchildren and other family or friends, older adults should focus on activities that give them purpose and joy.

8. Introduce your parents to the Internet if they aren’t already online. Online groups (and online support groups for caregivers) can provide hours of entertainment. The Internet also allows older adults to stay in touch with family. Numerous books and web sites offer helpful tips for helping seniors navigate the Internet. In addition, many online sites offer directories of web sites that are geared toward seniors, and are sure to offer them something they’re interested in.

9. Always have a current list of medications and doctors–and keep it communicated. According to the American Heart Association, 32 million Americans take three or more medications daily. Seniors often take double or triple that amount and sometimes more. Seniors should carry up-to-date medication and physician lists at all times, and the caregiver should have a copy, as well. For anyone dealing with multiple medications, keeping it current isn’t enough. It also needs to be communicated. When a medication list is first built for aging loved ones it should be sent to every provider and caregiver involved.

10. Encourage your loved one to stay physically and mentally active. For physical well-being, consider the local senior center for exercises, or check with a local rehabilitation facility for a wellness program offered to non-residents. For mental stimulation, seniors can keep their minds active with reading, puzzles, or one of the plethora of new Internet games geared toward the aging brain.

*The Harvard Men’s Health Watch Study: http://www.health.harvard.edu/press_releases/causes-memory-loss.htm

Happiness is a choice. Does that surprise you? One’s happiness is not defined by external events and circumstances. But I can think of individuals who make their happiness contingent on such factors. “If I get this…then I’ll be happy, or when that happens…then I’ll be happy. Sadly for those folks, happiness is often elusive or fleeting, at best. In contrast, perhaps you can think of people you know or have met, who are clearly happy despite living at or below the poverty level, or with a life-threatening medical condition. Basically, happiness is an inside job.

According to Eva Gregory, Master Law of Attraction Coach and one of the U.S. Ambassadors of International Happiness Day, “Happiness is not something we need to chase after. It’s our birthright. It’s who we are at our core.” http://www.internationalhappinessday.com/

This is the inspirational message of International Happiness Day, being celebrated on July 10, 2008. It is a day that people from around the globe can intentionally choose to be happy. At the same time, they can inspire others to be happy through acts of kindness and expressions of joy, gratitude, optimism, and forgiveness. Think of the far-reaching impact such a simple concept would make, when applied en masse.

It was enlightening to discuss this matter with my 89 year-old mother. She agreed with the premise, but said it was hardest for her to feel happy when she experienced severe physical pain. Even though she recounted situations where she suffered greatly, she still experienced joy in helping someone else during that same time. I think it’s her focus on others, not just self, that has made a difference in her outlook. She personifies Albert Schweitzer’s idea of happiness. “I don’t know what your destiny will be, but one thing I do know: the only ones among you who will be really happy are those who have sought and found how to serve.” I also believe that this concept applies to caregiving; we can derive happiness from providing this special service.

Another dominant theme in mom’s life is the impact of her faith on happiness. In situations where she was unfairly criticized, or someone treated her with anger or contempt, she just forgave them and said a prayer for the greater good and harmony. “I just was able to shrug it off,” she said. Which leads me to conclude that happiness is holistic in nature–not just on a physical or tangible level, but involving the emotional and spiritual dimensions, as well.

As caregivers, I encourage you to reflect on your own happiness. Are you happy, content, or at peace with yourself and others at this moment? It is an important aspect of self-care to explore. It might also be an interesting topic of conversation with your care receivers, family, and friends. I know that I gained a greater understanding and appreciation for my mom’s view of a happy life.

Preplanning when traveling with elderly and/or disabled individuals is essential. There are many considerations, depending on the individual’s specific health needs and the chosen modes of travel (e.g., auto, airplane, train, cruise, etc.). This post will primarily address air travel. Caregivers will want to begin well in advance.

Involve the care receivers in the planning, provided that they are capable of participating and doing so won’t provoke undue distress. Their ideas and questions are often helpful. It’s great fun to see their excitement.

If a passport is required for travel, make sure that an existing one is valid beyond your planned return trip date. If your care receiver doesn’t have one, allow plenty of lead time for application and processing. If a passport is not needed, make sure that an alternate form of photo identification is available
(e.g., driver’s license or state ID card).

My elderly mother and disabled sister will soon be flying a few states away to visit family friends for a long weekend. So I’ll refer to some specific examples of planning that we are doing throughout.

Medical Clearance
A check-up, discussion, and clearance for travel with the individual’s health care provider will get the process off to a good start. You will want to have an up-to-date summary or list of medical diagnoses, medications and supplements, allergies, any specific treatment plan unique to that person, plus provider
contact information.  

Individuals with episodic or chronic pain conditions will want to carry medical documentation with them, as well as, a supply of their pain medication(s). As a former Emergency Department nurse, I know that drug-seeking patients often present with complaints of migraine headaches or kidney stones to try and obtain opioids. Whenever I traveled with a family member who had kidney stones, we always took these precautions. My sister has complex regional pain syndrome, type 1 (CRPS1), more commonly known as reflex sympathetic dystrophy syndrome (RSDS). Her baseline pain is severe…and then there are times when it is unimaginable torture. Should she need an Emergency Department visit for any reason, there are specifics about her condition, treatments that are more likely to help, and contraindications detailed in a letter from her physician. http://www.rsds.org/2/what_is_rsd_crps/index.html

A copy of advanced directives should be carried unless they are available for download through a state or national registry. http://www.uslivingwillregistry.com/

You will also want to have sufficient quantity of routine prescription medications, plus those used on an as-needed or PRN basis. Some episodic conditions that immediately come to mind include: angina, asthma, migraine headaches, and kidney stones. My mother has recurrent urinary tract infections, so we will be bringing a full course of antibiotics, since we will be some distance from a pharmacy. Mom is susceptible to motion sickness; she prefers to use ginger capsules, therapeutic-grade essential oils, and acupressure. However some affected individuals may want to use other OTC or prescription meds for that purpose.  

Medications should be in their original labeled containers rather than in pill minder trays or strips. They should be easily accessible at all times, so do not pack them in checked luggage that may be delayed or even lost. My sister needs to carry EpiPens with her. They are allowed on airplanes because they are life-saving medication for severe allergic reactions. If needed, ask your doctor how many you should carry with you. Safety seals on the syringes must be intact. You may want to notify the airline in advance, just as you would make any other special arrangements. Wearing a MedicAlert braclet or necklace is recommended for anyone with significant health conditions and allergies. Individuals with dementia can be enrolled in both the MedicAlert and Safe Return (Alzheimer’s Association) programs. It’s also a good idea to pack a travel-size first aid kit that is customized for you and your care receiver’s needs. http://www.alz.org/we_can_help_medicalert_safereturn.asp

My sister takes a liquid pain medication, so her pharmacist provided a three-ounce bottle for air travel convenience and carrying in her purse. She also uses a topical compounded prescription cream. Larger quantities of medically necesary liquids, creams, or gels are permitted on board an airplane–refer to the following TSA advisory for details. Of course, all diabetic medications and supplies are permitted.

If eyeglasses or contact lenses are worn, that prescription should also be accessible in case of breakage or loss.

Medical Devices
Medical devices may include external, and internal or implanted appliances or devices. They may or may not be visible or obvious to others. My mother uses a hearing aid. We will make sure that the airport personnel know; it is perfectly safe and appropriate for her to go through electromagnetic screening while wearing it. She has also had a hip replacement. Based on a 2007 study that details what orthopedic hardware is most apt to trigger airport metal detectors, her single hip prosthesis is unlikely to be an issue. However it’s good to advise TSA personnel at the time of preboarding screening. http://www6.aaos.org/news/Pemr/press_release.cfm?PRNumber=592

Other individuals with pacemakers, implanted cardioverter-defibrillators, spinal cord stimulators, and other implanted pumps and ports may be concerned about electromagnetic interference from airport metal detectors. Physicians and manufacturers have routinely warned of potential problems such as inappropriate sensing, pacing, or inadvertent reprogramming. A recent German study of individuals with implanted pacemakers and cardioverter-defibrillators offers credible reassurance; I recommend discussing it with your healthcare provider. http://www.medscape.com/viewarticle/456785  http://www.ncbi.nlm.nih.gov/pubmed/12798581?dopt=Abstract

Durable medical equipment such as canes, crutches, and walkers (especially the collapsible ones) are all allowed on board an airplane. Personal manual wheelchairs may be checked at the gate. In our situation, both people will need wheelchair or electric cart transportation to the gate. It’s another item on our list to arrange in advance with airline personnel. We will be renting a wheelchair at our destination for ease of mobility and conserving personal energy. We will also be taking each person’s handicapped parking placard along. Mobility International USA has even more airline travel tips to assist you. http://www.miusa.org/ncde/tipsheets/airlinetips 

I recently discovered a supplier of travel products, especially geared to disabled travelers. The portable grab bars seem especially useful for many folks. http://disabledtravelers.com/ Their website has many resources and links to individual airlines and agencies of interest to disabled travelers. I learned through this site, that the Department of Transportation (DOT) has a toll-free hotline to assist travelers with disabilities.  

Booking Flights
At the outset, you may want to check into flight insurance and determine if coverage is available for you and/or your care receiver. Consideration may also be given to purchasing refundable tickets. Know terms and fees for making changes, regardless of the type of ticket used (even frequent flyer awards). 

Deciding on length of flights and number of connections is important. Some travelers will do better on shorter flights rather than longer ones. Others will prefer direct flights. If your itinerary includes connections or layovers, be sure to allow at least 90 minutes for each. Also take into account the size of the airport, number of terminals, and likelihood of delays or cancellations based on time of day, or seasonal weather issues. If your care receiver is wheelchair-bound, remember that only double-aisle airplanes have accessible lavatories, when booking your flights. Speaking of lavatories, the companion or family restrooms in airports and shopping malls are truly appreciated by caregivers. We plan on using incontinence briefs on travel days for a little extra protection just in case of a prolonged wait.

Arrangements must be made at least 72 hours in advance for anyone traveling by air needing supplemental oxygen, CPAP, or other respiratory equipment. I recommend reading the Johns Hopkins Health Alert on “Traveling Smart With Oxygen,” if your care receiver has any kind of lung condition, even if they are not routinely receiving oxygen therapy at home. Your health care provider may want to do preflight testing to determine the need for inflight oxygen or at a higher flow rate than usual. http://snipurl.com/2pl77  http://johnshopkinshealthalerts.com/alerts/

Packing & Day of Travel Considerations 
We are trying to limit our luggage for ease of travel and because of the surcharges that now apply. We plan to use the curbside check-in service. Care will be given to selecting clothing to wear. Jackets, sweaters, and shoes need to be easy to remove for security screening. Layered clothing offers more flexibility and comfort with varying temperatures. We will carry on snacks such as nuts or trail mix. A protein source is especially important for those with diabetes or prone to hypoglycemia. Reading material, small travel puzzles, or games are helpful given any potential delays. Of course, we will be taking a camera to document our trip. After forgetting a cell phone charger on a previous trip, a spare is now always kept in my luggage.

We plan to use personal nasal inhalers with therapeutic-grade essential oils (such as Young Living’s Thieves blend and R.C.) to keep our upper respiratory tracts healthy and decrease sinus pressure and congestion. We use them before flying and when we reach our destination.     https://youngliving.org/pschro

Even though our direct flight is under three hours, mom will probably need to stand up once or twice and probably walk a short distance to prevent stiffness and joint pain. She will travel by car about 1.5 hours to the airport and another 1 hour from the airport. That’s a lot of travel time for her, in one day. Mom usually has dependent edema in her legs and wears compression hose. So she plans to do some foot and leg exercises to further minimize any risk of developing blood clots. She will drink water to keep hydrated, but we have to balance that with the need to use the lavatory. 

On the emotional level, we have talked about “packing” flexibility, patience, and humor. I am looking forward to experiencing the trip through my care receivers’ eyes, not just my own. I know that I will need to be assertive while advocating for their needs. Hopefully the most challenging part of our trip is the advance planning, which is almost complete. This post details much of the research I’ve recently done to prepare for traveling with elderly and disabled care receivers. I hope that it will be helpful to you. I invite readers to share any other ideas and resources that you believe will assist us and other caregivers.

The Bridge

“There are times in life
when we are called to be bridges,
not a great monument spanning a distance
and carrying loads of heavy traffic
but a simple bridge
to help one person from here to there
over some difficulty
such as pain, fear, grief, loneliness,
a bridge which opens the way
for ongoing journey.

When I become a bridge for another,
I bring upon myself a blessing, for I escape
from the small prison of self
and exist for a wider world,
breaking out to be a larger being
who can enter another’s pain
and rejoice in another’s triumph.

I know of only one greater blessing
in this life, and that is
to allow someone else
to be a bridge for me.”

This reflection is written by Joy Cowley and is reprinted her with her kind permission. It is from her book, Aotearoa Psalms, published by Pleroma, Higginson St, Hawkes Bay, New Zealand. The book includes lush illustrations by photographer, Terry Coles, who is Joy’s husband. The email address is: order@pleroma,org.nz. It is also available on http://amazon.com and in some religious book stores. Joy is a prolific author of children’s books. She also writes and speaks on Spirituality, as evidenced by the reflection in this post. I enjoyed reading the speeches posted on her website. http://www.joycowley.com/