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Slightly cranky but loving (I hope) PSA:
If you have a friend or relative who is caring for a loved one (or more than one loved one) and that loved one is either dying or really really old or really really sick, please:
1. Ask, don't tell.
2. Ask what the sick or dying person needs and don't assume visits are a free-for-all. The person/patient may have dementia and be overstimulated if more than one person visits at a time, which can then cause agitation and a worsening of emotional states and sometimes physiological distress. The person may sleep a lot. The person may want and need to be touched (or not - in my particular family we are touchy-feely, but some families or persons are just the opposite). The person may respond well to music (or not). The person may (or may not) have a spouse or partner and their rare awake time may need to be with the spouse/partner in order to give priority to what little intimate time is left -- even if the intimate time consists of simply sitting there for half an hour holding hands. Your need to be with the person is important, but may not be as important as the person's need to have precious time with spouse or partner if time is short. (Of course, one doesn't always know if time is short or at least how short it is.)
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| (c) Jane Redmont 2016 |
Also: Find out if the person is hard of hearing (this is likely if the person is an elder) and whether some modes of communication work better because of this. (Speaking face to face and not sideways, enunciating carefully, etc.) If the person primarily speaks ASL, visual challenges may have altered their capacity to communicate. Be aware of whether the person has dementia or some other form of cognitive impairment; if comprehension is becoming difficult for them, use short sentences; wait between sentences for the information to be absorbed and processed.
2-plus. Ask the primary caregiver; they will probably know all this stuff.
2-plus-plus. Consider the needs of the caregiver as well as the needs of the sick or dying person(s). If you don't know what those needs are, ask.
2-plus-plus-plus. As hospice workers well know, take your cues from the person who is dying or terminally ill. If they are conscious and able to communicate (and sometimes if they are not) they will give you cues. And they will give cues to the primary caregiver, whose responsibility it is to listen and watch for those cues.
3. Don't ask the caregiver to take care of your travel and lodging logistics if you are visiting from out of town.
4. Be aware that you are not the only friend or relative who is contacting the caregiver. The caregiver probably has more communication than they can handle.
5. Bear in mind that the ill/dying/elder person/patient and the caregiver are rarely just dealing with one single medical or caregiving entity or agent (person, institution). Caregiving agents can include the care facility, its staff (medical, social, spiritual, food, daily health and cleanliness), private-pay caregivers (if the person is at home or if the person is in a facility that can't do the job all alone or is understaffed or under-functioning), the agency that supervises the private-pay caregivers, hospice if hospice is now involved in the care (which needs to be coordinated between hospice and the facility and/or the primary caregiver), volunteers, relatives, a geriatric care manager, primary spiritual care person, pets if there are such, and more. Coordination of care is a job and a half. Sometimes there is a professional to do that, sometimes not.
6. If the caregiver does not volunteer the information, ask whether s/he has lined up a reliable relative or friend who is or can be the conduit of information and updates to the family (and/or other loved ones, pick your definition of family), so that said caregiver does not spend all their time and energy answering individual missives and repeating themselves all the time. And so that the caregiver's boundaries are somewhat protected and the caregiver is not frequently interrupted by a gazillion phone calls and text messages. Get on that communicator/conduit-person's e-mail list (or phone chain or text/IM list). Be aware that the caregiver is communicating with all the entities above, primarily to take care of the well-being of the sick or dying or elder person. The caregiver is in constant triage mode, about everything -- including communication. Constant. Except when s/he/they is/are asleep, when s/he/they turn(s) off all electronics. Unless someone is actively dying. Or unless there is some other emergency. Or unless there is a respite person.
(In case you hadn't already figured it out, unpredictability is the name of the game -- though at the same time, a person who is ill/elderly/has dementia will do much better if there is a routine in their life.)
7. Spare the caregiver your lectures on self-care. Give her/him/them some care instead. Ask what they need. Protect their boundaries.
7-plus. If the caregiver is reasonably psychologically healthy, s/he/they will be putting a priority on sleep, nutrition, and other basics. (For some people that includes exercise and fresh air, sometimes not. See above under triage.) What they often can't do, and lectures on caregiving won't help, is wash the dishes (or even just load the dishwasher if it's the end of a tiring day), clean the kitty litter, fold the laundry, pay the bills, tidy up the house, straighten out piles of paper, sort the mail, get enough fresh air, afford massages, pay or supervise a house helper, answer all mail in a timely fashion, drop off or pick up the dry cleaning, call someone hired or volunteer to put in the a/c window units for the summer, change light bulbs (I know a caregiver who let the main dining room light fixture go without a change in one of its light bulbs for two weeks because it was Just One More Thing), get the car inspected when it's one month overdue for that, pick up and clean up a kitty hairball as soon as it gets upchucked, rinse the lettuce, and remember everything, even with a notebook or a to-do list. Chances are, if the caregiver is not rolling in cash and does not have household help, any or all of the above will be the case.
8. Do ask how the caregiver is doing. That's very different from lecturing the person on self-care. The caregiver will probably appreciate your asking about her/him/them and not just about the sick or dying person. They will of course appreciate your care for that person as well.
9. Bear in mind that in addition to basic self-care (the old "put on your oxygen mask before you put on your child's oxygen mask" in case of loss of cabin pressure in the airplane) the caregiver's first priority will be the care and comfort and well-being of the patient/relative/elder/loved one. Caregivers have a lot on the back burner. They do their best about all those things. They have done one basic piece of triage, and then within that they do all kinds of mini-triage, sorting priorities as they go and as the needs of the sick/dying/elder person require.
10. Unless they are trust fund babies or have worked a lifetime in a for-profit business or have a spouse with income, caregivers still have to earn a living, or tap into savings or other sources of income, or ask for or keep up support from various forms of public assistance, family emergency aid or loans, or other material aid, depending on circumstance, family situation, and socio-economic situation. You can add that to the sources of stress.
11. On the other hand --yeah, it's complicated...--- don't assume that the caregiver has no room for anything else but caregiving. The caregiver still has a brain. They are still the same person. They still like strawberries or Mozart or Beyoncé and they still have their own household and professional interests and/or demands and/or desires. They may have room in their schedule. They may want that freelance work contract or concert ticket or sorbet. ASK. Don't assume.
You get the picture.
Oh, and
12. Spare us the bad theology. The current circumstances, including the more heart-warming ones and the painful ones, may or may not be God's will (would you say the same about the deaths in Orlando and Istanbul?). God's plan may or may not be knowable right now. People do sometimes have more than they can handle. Evil exists, People --medical, political, and other-- do screw up. Systemic evil affects individual lives. Systems are dysfunctional and sometimes worse.
God's presence is real. In sorrow as in joy. There are angels; of mercy, of beauty, of justice. You may well be one of them. There are generations before and after us. The ancestors accompany us. The rising generations carry on our legacies. Friendship is one of God's greatest treasures. (Sorry to get trite, but it's true.)
ALSO:
Prayers. Of accompaniment as well as for healing. Lament is good too.
P.S. Bear in mind that the people for whom you are praying may not believe in God or may be from a different tradition from yours. Work with that. In the land of suffering, compassion exists across all boundaries, but religious pluralism and difference still exist. I don't have a formula or mode d'emploi for this.
Compassion is always the best guide.
