Caring for Loved Ones

One of the most demanding jobs one can be called to is care giving.  Not every family member is gifted in this area.  Consequently, a large portion of responsibility may fall upon the shoulders of only one or two family members, who may or may not be the patient’s spouse.  How can we ensure the caregiver is cared for while our family members are convalescing? 

Before a scheduled hospitalization

Make sure the wishes of your loved one are known and in writing before a hospitalization, particularly if a risky procedure will be undertaken. This document, called an “advanced directive,” should include what kind of care is desired in a variety of circumstances and who shall be empowered to make decisions while the patient is incapacitated.  A pamphlet called “The Five Wishes” provides a series of simple health care questions to be answered and is an excellent resource for this type of communication.  These are available on-line, at most hospitals and hospice centers, and Sage Holistic Health will gladly provide you with one at the clinic. A completed Five Wishes is considered a legal document in Colorado and will serve as an advanced directive. It should be on file with the hospital and your loved one’s primary care provider.

The most important aspect of an advanced directive is naming a “health care proxy” who is empowered to speak to the medical team and make medical decisions while the patient is incapable. This person is someone with whom the patient has discussed their wishes and has entrusted their medical decisions. The health care proxy may or may not be a spouse—especially if a close family member is a medical professional and the patient prefers that person “to be in charge” while consulting with their spouse.  A formal will should also be completed that also names a financial power of attorney in the event financial matters need attention while the patient is recovering.

Communication with friends and family in these high tech times has become much more expedient.  Create a list of all the people your family wishes to keep informed of your family member’s progress. You may wish to create separate lists for friends and family if you feel there may be some details you’d prefer to share with only one group. Begin by introducing “the news.”  (e.g. Stacy learned she must undergo _____ procedure.  Her surgical date has been set for_____.  We will keep you informed of her progress and let you know if we need any support.)

This will cut down dramatically on the number of daily “updates” that the caregiver will be required to give after an exhausting day at the hospital. Set up the expectation that group updates will be distributed at a particular interval so your home is not deluged with phone calls and visitors, who while well-meaning, are often exhausting to endure at a time such as this.

An alternative to the email system would be a phone tree system set up in advance whereby the immediate family updates the “trunk” of the call list and friends/family make all the remaining calls.  This is more cumbersome and risks confusing the message.  However, if email is just not going to work for your family, this would take some of the pressure off the main caregiver.

Give regular updates while protecting sensitive medical information so friends and family do not become “nervous” and start calling or stopping by either the hospital or your home.  Include explicit instructions in your updates regarding whether or not hospital visitors are welcome or would be helpful.  Be mindful of the main reason the family member is in the hospital: to recover.  If the medical team feels visitors will help in the healing process, create a schedule for visits.  If visitors will unduly fatigue or distract your family member from listening to their medical team, gently and kindly limit visitors until a more appropriate time (usually after discharge).

Make sure the caregiver eats and sleeps!  This may sound simplistic, but care giving can be absolutely exhausting physically and emotionally.  If friends/family wish to do something, suggest they take turns bringing over small prepared meals that can be easily reheated or frozen for later.  Below is a tool that may be helpful in planning.  The caregiver should consider getting a massage or other nurturing treatment, soaking in a hot tub, going for daily walks, or maybe even seeing a movie. 

Emergent Hospitalization

Clearly, this is a different situation than an orderly and planned procedure. There is a certain shock to an emergency which the caregiver needs to manage personally and with other interested parties while the medical team assesses the situation.  Understanding the patient’s condition and prognosis then effectively communicating to friends and family while protecting medical privacy can be very challenging. 

If an advanced directive is not in place at the time of the emergency and the patient has not named a health care proxy who is empowered to make medical decisions, the medical team is more likely to be reluctant to share medical information or include the caregiver in the decision-making process. In an emergency, the medical team’s first priority is to attempt life preservation. Procedures intended to save a life may fly in the face of what the patient would have wanted had there been more “order” in the situation. For example, an elder who has a diagnosis considered terminal may have decided they don’t want life supporting measures taken should they suddenly fail (e.g. have a heart attack or car accident resulting in life-threatening injuries). If the patient has a written advanced directive in place along with an order refusing resuscitation (DNR), their wishes may be honored. However, even if the patient has told their entire medical team and family their wishes, but have not written and filed an advanced directive with the patient’s primary care provider and the hospital where they happen to end up, life saving measures will be taken.

Being the caregiver in this situation can be extremely stressful and upsetting. Establishing the decision-making hierarchy in these circumstances can require simple “good will” from the medical team to include “family” in decisions, or can result in legal action in order to establish “who decides” the treatment course. In the end, the life or passing of the patient is ultimately left to a higher authority, but expected dignity of the process may be lost. It is these circumstances that support an argument for everyone to have a current will and advanced directive in place—well before an emergency occurs.

Before Discharge

Have a conversation with your loved one’s medical team in order to learn what limitations or special needs there may be upon discharge. You may want to set up a meeting with the case manager for this purpose, as they often have a larger picture in mind than just the nursing staff or even the doctor. Ascertain how long a recovery period is expected, whether your loved one will be discharged to home or a long term care facility, and what type of in home services might be needed if they are coming home. Evaluate the home well in advance of discharge for trip hazards, air quality, whether s/he will be able to navigate stairs, whether a hospital bed will be required, and make sure appropriate meals are arranged.

Don’t be afraid to ask for help if you discover something in the home needs to be addressed. Use your friends/family list and let it be known what you need. Your friends/family likely will want to support you, but may not know how or what would be welcome.  For instance, some people are not natural caregivers, but would be thrilled to be able to help with replacing a walkway that is a trip hazard.

Research what programs are available near your loved one’s home.  Most communities have some version of “Meals on Wheels” as a longer term daily hot meal option. Some are affiliated with churches while others are privately funded. A personal chef may be a better option if your loved one will have strict dietary limitations or if they live in an underserved area for delivered home meals.  Personal chefs are trained and regulated as chefs and are usually very willing to customize a meal program. They come to the home with the required groceries and prepare and freeze selected meals for reheating later. In many communities, there are often volunteer programs for transportation to doctors’ appointments, doing light outdoor clean up or snow shoveling, lawn mowing, etc. The more you are able to put in place in order to support a return to independent living at home, the better quality of life your loved one is likely to have and the faster they are likely to recover.

Upon Discharge

Make sure the primary caregiver is present upon receipt of discharge instructions so there are no communication gaps.  Confirm the list of discharge medications and dosing schedule with the discharge nurse. Make sure the follow up instructions and scheduled doctors’ appointments are very clear to the care giver(s). Ask whether physical therapy and/or occupational therapy needs to be arranged. These visits can occur in home or at the practitioner’s office, and can be a crucial part of the recovery process especially following an orthopedic or heart surgery, or recovery from a stroke.

Following discharge from the hospital is when all the concerned friends and family can really help. The trick is to organize the help so it is spread out and not redundant.  Create a list of things the family needs in terms of support.  This might include meals, relief caregivers, visitors, help maintaining the home (which may include cleaning, caring for or feeding pets/farm animals, mowing, etc.), rides to appointments, or even standing in for the caregiver’s or your loved one’s responsibilities if appropriate in order to relieve him/her. You might name one person to actually do all of the scheduling for your family, giving your main caregiver a break. Create a calendar that lists what “jobs” are filled by whom and what is still needed.  Include specific time frames.  For instance:
Wednesday 9/1:
Care giver: Karen (9-3pm)
Visitor: Sue (2pm-5pm)
Dinner: OPEN
Notes: Bob needs to be reminded to check his blood sugar at 8am, noon, and 6pm before meals.  He should walk to the end of the driveway today.

Thursday 9/2:
Care giver: Becky (9-3pm)
Visitor: OPEN    (2pm-5pm)
Dinner: Mary
Notes: Bob needs to be reminded to check his blood sugar at 8am, noon, and 6pm before meals.  He should walk to the end of the driveway twice today.

The following website provides a handy tool for this type of scheduling and easy updating:
http://www.carecalendar.org/

The Caregiver

We come full circle back to the caregiver. This could be YOU.  It could be a sibling, parent, or friend.  One thing is fairly certain in life: you will be one or need to support one, whether you planned on it or not.  Like in any healing profession, if the caregiver does not care for themself, s/he will have little to offer. 

If you find yourself in a care giving role, find ways to nurture yourself.  This may include receiving treatments as mentioned above. You might ask a friend to take you out for a break. You may even need to ask someone who is not a capable or constructive caregiver to “help” you by staying away. Rest as much as possible and put systems in place in order to let others help you help a loved one.  Recovery is a process and will require more than one person for a successful return to health.

Like the airlines warn during their dreary safety talk before commencing a flight: “if oxygen masks appear, place one properly on yourself before attempting to aid others!”
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