Gar Demo

Homecare has been identified as the preferred arrangement for temporary or long-term caregiving as well as care-receiving.  Undoubtedly, home care is the preferred option for temporary spousal caregiving.  Issues that result in the decision to place a loved one needing care in a non-home setting for often relates to a person’s mental and physical abilities, psychological well-being, autonomy, caregiver burden, best interests of the care-receiver, and security. 

During the pandemic, my elderly aunt suffered long-Covid effects.  She was physically able to stay in her home, but needed 24/7 assistance with meal planning, meal preparation, bathing, dressing, walking, shopping, house cleaning, and financial management.  She had four adult children, including adult grandchildren and little great-grandchildren. 

From my vantage point, I observed that each of my aunt’s children and grandchildren demonstrated a personal caregiving superpower—their own spiritual gift(s) of love.  One of my aunt’s sons managed her finances.  A daughter and adult granddaughter temporarily moved into her home to provide personal care, meal planning/cooking, and housekeeping.  A second daughter brought in meals on the weekends, did the weekly shopping, and took her mom on out-of-the-house diversions.  Another son provided home maintenance and grounds-keeping tasks.  Each of the kids, and grandchildren visited in their usual fashion and offering stimulation.  My aunt was joyful! Everyone took turns spending time with her so the in-house daughter and granddaughter could get away for a few hours, an evening, weekend, or holiday.

As I observed from a distance, I thought that identifying one’s caregiving superpower may just be a remarkable way to share caregiving tasks.  Each person had a superpower they were proud to offer.  They gave of it lovingly and freely.  It afforded each to display their strength(s).  It was organic and natural.  Doing so lessened the burden on any single individual and minimized conflict as each person respected one another’s boundaries.  They devised a flexible week-by-week schedule to handle emergencies and provide respite. When there was a crisis (and there were), someone was always able to respond with immediacy.  They utilized home care and ultimately hospice services, including chaplain care that was available to any member of the family. 

Next time you or a loved one needs caregiving,  examine your spiritual gifts.  Challenge others to look for theirs.  Set boundaries.  Build a flexible schedule and offer one another respite.

Submitted by Suzan Olson, PhD, MHS, RN, Board Certified Chaplain

Imagine for a moment that you have a loved one who lives a distance from you and has become desperately ill.  You would give anything to be in closer proximity so that you could reach out and help with the care of this special relative or friend; instead, you will have to create long-distance caregiving.  This was the situation in which my husband and I found ourselves some twenty months ago.  With Covid rearing its ugly head and complicating life for everyone, our eighteen-year-old beloved grandson was diagnosed with Lymphoblastic Lymphoma, a B-cell blood cancer not unlike Leukemia.  This was the beginning of 18 months of intravenous chemotherapy and accompanying treatments.  Our grandson does not live near us, but in a community some forty miles away.  We asked ourselves how we could help him to endure the nauseating treatments and conquer this hideous disease from a distance. 

Our long-distance caregiving began with telecommunications as he was too sick to talk on the phone; we e-mailed frequently and texted almost daily.  We also wrote and mailed notes of encouragement, love, and hope.  When he was strong enough to carry on a conversation, we phoned and FaceTimed.  Keeping food down was a huge issue, so we set aside every Friday for over a year to prepare a meal and dessert of his choosing; frequently, when we drove to his family’s home to deliver the food that he had requested, we found him unable to consume a single bite without becoming violently ill.  As he became stronger and felt like doing something outside of his home or the medical center, we began to take him on short excursions, such as to the Nelson Art Gallery, Union Station, and hockey games when Covid would permit.  Very recently, we took him with us to view the migration of Sand Hill Cranes in mid-Nebraska which we all enjoyed!

Currently, our amazing grandson’s treatment has been changed to oral chemotherapy; he will remain in this stage of treatment for two more years.  This delivery system seems to be much easier on his body and his mind, and he is now able to feel fairly well on most days.  We continue to be in frequent touch with this amazing young man and his family, and we feel that we have contributed to his healing as best we could.  In a perfect world, no other families will be faced with a situation similar to ours and with the need for such measures; however, should the need arise, a heartful of love can create long-distance caregiving.

Submitted by Margaret Walkenshaw

This is my perspective. I do not speak for everyone in the field. I speak for myself. I speak on behalf of other professionals I have directly spoken to and what they see. I speak on behalf of the families who provide for other members who need support for one reason or another. To love someone unconditionally is to love, simply put, with no strings attached. To love without condition. I love you. Not, “I love you if…” or “I love you when…” but simply, “I love you because you exist, because you are you.” So many people who provide some degree of caretaking and caring for others, function from this locus.

Caretakers. The ones who are in the homes, every day, with the people they are caring for.  These are the parents, grandparents, siblings, guardians of an individual who need caring for. For some, this is a small two-year-old who is becoming who they are, finding their voice, and taking the world in, learning an amazing number of things. They feel so much and may not quite have the vocabulary or self-control yet to express it. For other’s this is a teenager who is trying to navigate their next steps in life, going through hormonal changes, and being exposed to a number of things in the world that we were not exposed to in the same manner. For some this might mean caring for an aging parent who perhaps needs physical assistance and maybe experiencing decline in cognitive functioning. And then there are others, who are helping a loved one (young or old) who is developmentally delayed, sensory sensitive, neurodivergent, experiencing a number of mental or behavioral health issues, or perhaps a culmination of these things. Many times, when families come through my doors, they are tired, sometimes distressed, and even experiencing what we refer to as “caregiver burnout,” which is a state of physical, emotional, and/or mental exhaustion. Any level of caregiving is taxing. But when an individual is caring long-term for someone with long-term disabilities, this can oftentimes result in “caregiver burnout.” Sometimes, caregiver’s have supports (a significant other, relative, or support worker) who can assist them and give them respite in order to care for themselves. Other times, individuals may be caretaking solely by themselves. This may occur when family does not live close, when the person who needs caretaking needs are so great and the caretaker does not want to burden others, and at times this is due lack of insurance coverage for adequate supports for the individual or due to lack of insurance entirely.

Now, I challenge you to take a moment to think about what the last point might be like. Imagine needing to limit what outings you do because your loved one cannot tolerate noise or perhaps doesn’t understand safety and cannot be in places where they have access to frequently opening and closing doors. Imagine having a child, who is 14 and looks 14, but when they become upset, they cognitively process and behave closer to what a two-year-old would. Imagine having people confront you to “manage your child” or worry that people are thinking that when they stare at you when they are struggling to cope at a store that has become very overstimulating because it is so loud and there is so much motion happening. And then imagine that this occurs every day, to some degree. To love without condition.  To want to protect your loved one by decreasing the negative experiences and limiting what sorts of activities they do. And perhaps preserving their own mental wellbeing, as a caretaker, by avoiding certain activities so they don’t have to manage a behavior, that at times, may last for hours and even days.

I challenge you to walk in kindness. Speak kindly to those you cross paths with. When you see a caregiver who has an upset child or young person, remind yourself that perhaps they are going through more than you can visually see. When you see a parent being patient or working through a behavior, tell them they are doing a great job. If you have the chance to advocate for better supports and coverage by insurance, do so. If you are the friend of a caretaker and you can offer to help, even to allow that person a 5-minute break, do so. Most importantly, remember that we are all human. We all have our limits. But to walk in kindness, means to walk in love. And while caretaker’s love unconditionally, they too, need to understand that they are loved, without condition.

Kari A. Wold, MA, LMLP