With a critically ill partner, your life may begin to feel like a circus. While your focus is on caring for your spouse, you may also be raising children, paying bills, trying to hold down a job, keep your children fed and in clean clothes, and communicate with people who love and are praying for you. You may be exhausted, physically and emotionally. How can you maintain your equilibrium?
“Give all your worries and cares to God, for he cares about you.” I Peter 5:7 (NLT)
SUPPORT and SELF-CARE:
- SAY YES when people offer to help. Saying “no” takes away the blessing they receive by helping and leaves you isolated. The Body of Christ is to support and care for each other, so don’t try to go it alone. Perhaps someone can grocery shop for you, or sit with your partner while you take a break. Perhaps a friend can drop off and pick your children up from school. One of our friends organized the files and contacts I had started while in another state for treatment.
- CARE FOR YOURSELF: Jerry’s doctors told me, “You need to continue to have a life so that you can go on if he does not survive.” I rarely left the hospital except for meals and nights; but when I could I went to church, and once or twice I saw a movie or had dinner with friends. As critical as your presence is, you also need some breaks in order to remain healthy and able to continue the fight. Caregivers are prime candidates for becoming ill themselves.
- JOIN RELEVANT SUPPORT GROUPS: Many hospitals offer support groups for patients and their families, e.g. groups for cardiovascular health, cancer, caregivers, and organ transplants, among others. Check online for “support groups” in the hospital where you are receiving treatment. Our liver transplant group was informative and helpful, sometimes even more so for me than for Jerry, as it helped me understand more of his illness, symptoms, and needs. The hospital may have a social worker who is available to talk with you when crises occur.
- COUNSELING may also be helpful for you as you process the illness and the “what ifs” that may face you.
ADVOCACY: At one point, my husband was placed in a room with another man who had a different infection than Jerry did. I fought to get him moved; when the hospital administrator said their protocol said these two infections could co-exist, I exploded. “I’m fighting for my husband’s life and don’t care a bit about your protocols. You move him!” They did. Speak up!
- SAY IT NOW: Live and speak in such a way that if your partner survives, he is encouraged by your loving concern; and if he dies, you need have few regrets about things you’ve left unsaid. We have no guarantees about any of our lives, so this challenge is for all. Express your love, appreciation, admiration and respect, while you still can.
- UPDATES: When your spouse is ill, friends naturally want updates on his or her condition, at a time when your energy and focus are at their lowest. My nephew suggested I build a phone chain so that, if I called one person, that person would call three more, and so on. I listed the names and phone numbers of those I wanted notified quickly in the event of a crisis (and there were several) or death; and communicated that “org chart” to the people on it so each had the number of the persons I asked them to call.
- I also sent emails regularly to a large distribution group of family and friends. This helped me reach out for prayer and support, and also allowed me to process my feelings as I wrote. Benefits included a great deal of prayer support and love, even from a believer (a stranger to me) in another country who told me of her experience with a transplant and offered prayer.
Your church may offer Stephens’ Ministers. These trained laypersons are willing to walk with you through any difficulty, including illness or loss. Receive the help available in the spirit of love in which it is offered. And remember, “…He cares about you.”
My late husband was critically ill. Because of a tracheotomy in his throat, he couldn’t speak for the last two months of his life. Touch became even more important than it had been. Knowing I was there, holding his hand, talking to him, being quiet with him, helped ease his sense of isolation. One day my brother was visiting and encouraged me to go back to my apartment for a much-needed nap. He would stay with Jerry. When I returned about two hours later, I saw my husband, lying in his hospital bed, eyes closed. My brother, sitting at his side reading, was holding Jerry’s hand. That image is indelibly stamped on my mind.
I was blessed in being granted an eight-month leave of absence (quite a bit more than required by law) to care for, advocate for, and be with my husband during his illness–treasured time for both of us. You, too, may be eligible for unpaid Family Medical Leave (FMLA) if your spouse is seriously ill.
FAMILY MEDICAL LEAVE ACT (FMLA)
“FMLA applies to all public agencies, all public and private elementary and secondary schools, and companies with 50 or more employees. These employers must provide an eligible employee with up to 12 weeks of unpaid leave each year for any of the following reasons:
- for the birth and care of the newborn child of an employee;
- for placement with the employee of a child for adoption or foster care;
- to care for an immediate family member (spouse, child, or parent) with a serious health condition; or
- to take medical leave when the employee is unable to work because of a serious health condition.” https://www.dol.gov/general/topic/benefits-leave/fmla
For additional information and eligibility requirements, see https://www.thebalance.com/family-and-medical-leave-act-fmla-2058514?utm_term=what+is+family+leave+act&utm_content=p1-main-1-title&utm_medium=sem&utm_source=google_s&utm_campaign=adid-b2d52b33-ace1-4b0c-a162-3a3e8c075923-0-ab_gsb_ocode-4573&ad=semD&an=google_s&am=broad&q=what+is+family+leave+act&o=4573&qsrc=999&l=sem&askid=b2d52b33-ace1-4b0c-a162-3a3e8c075923-0-ab_gsb.)
While a 12-week Family Medical Leave is generally unpaid, the Leave Act protects your job and requires that your group health benefits remain intact during its duration. Discuss your options with your employer’s Human Resources department. Perhaps you can use some of your sick time for pay during the Leave. Your employer may allow you to work from the hospital or home on some days. If you can’t afford to take unpaid leave, can you arrange for others to check on your spouse during the day? Talk with his caregivers about effective ways to communicate if you continue working during your loved one’s illness.
This is a difficult, challenging time. I treasure the scripture found in Psalm 56:8:
“You keep track of all my sorrows.
You have collected all my tears in your bottle.
You have recorded each one in your book.” (NLT)
If God collects our tears, records them in His book, how deeply He must love us.
Next week we’ll discuss financial issues.
After my Dad was diagnosed with terminal acute leukemia, one of the first things he said to Mom was “You need to get a light-weight vacuum cleaner.” He’d helped Mom by vacuuming the house for years; he knew the machine was too heavy for her. He also had her bring the checkbook into the hospital, where they reviewed their finances together. Lovingly, Dad wanted to ease the transition of his passing for Mom where he could.
None of us wants to think about the death of someone we love, especially a spouse. Nevertheless, the time to prepare for it is while you are both living and healthy.
In the next several blogs I will discuss various aspects of preparation for the death of someone you love, including finances, care options, communication with family and friends, understanding your own limits, and saying goodbye. For purposes of communication I will speak about losing your spouse or partner; however, many of these ideas will also be helpful in the death of another loved one or family member.
Following are some questions you may want to use to start the discussion with your spouse about about their wishes in the event of critical illness or death.
- If either of us is unable to make crucial medical decisions due to incapacitation, or our heart or breathing stop, do we want medical personnel to perform life-saving procedures? If not, do we have a DNR (“Do Not Resuscitate”) form signed and on file with our physician(s)? (See http://www.answers.com/topic/do-not-resuscitate-dnr-order)
- Where are our legal documents i.e. wills, trust documents, deed of trust for our home, automobile pink slips, and stock certificates? List our banker(s), lawyer(s), financial consultant or CPA, insurance and stock brokers. (Will include a form for this in another post.)
- List our bank accounts and locations. Where will we keep these confidential lists safe? If we have a safe deposit box, where is the key? Is the other partner listed as a designated signer on the bank’s form? Does he/she have a key? Should we list a non-family member in the event we pass away at the same time?
- If possible, teach each other how and when to pay bills, how to fill the gas tank, and how to complete other tasks that may have been his or her responsibility before illness set in. For example, my mother had never filled the gas tank before Dad died.
- Have we each specified in writing who we want to receive special personal items such as wedding rings, jewelry, art, tools, or furniture?
- Do we prefer burial or cremation? If burial, where? Can we pre-purchase the site? If cremation, where would we like our ashes spread?
- Have we talked about or listed special wishes for music, pastor or priest we wish to perform our memorials, or other preferences for our services?
- If we have pets, where would we like them to go after our death(s)? (My contract with the woman from whom I purchased my Cavalier King Charles Spaniels indicates that in the event of my husband’s and my deaths, “the girls” will return to her. This ensures our dogs will continue to be loved and well cared for, and that no family member or friend has to take in a pet they may not want.)
My prayer is that these tips will help you be better prepared at such time as you face the critical illness or death of one you love.