For every primary Caregiver out there, you will find at least double the number of long distance Caregivers who are not the primary Caregiver to their loved one. The aspect of distance, and not knowing what is happening on a day to day level, combined with often having little or no say in what care is being provided, is a lethal stress bomb waiting to blow.
Family members living away experience just as much pain and uncertainty as the primary Caregiver at home. And, in some cases, even more. They are often feeling helpless in not being able to contribute directly to the care of their loved one, and can begin to experience a strong sense of isolation at being left out of the decision making process.
In fairness to the primary Caregiver, it is often easier to make most of those decisions on the spot. Taking time to call family who lives away is not always possible, or realistic in the everyday issues that arise. Still, not including other family members can place a big strain on relationships, or test the bounds of understanding. Frequently, increased communication between ancillary and primary Caregiver is enough to dispel these family tensions. However, there are times when another approach is required.
I used to tell my siblings not to worry, they were too far away to help with things, and I had everything under control. In retrospect, I can see now, by shutting them out in this manner, I placed added tensions on already strained relationships.
I put myself in a position of not being able to comfortably ask for help. Later on, when my parent's condition deteriorated, this contributed to my own feelings of isolation. I realize now how important it is to maintain as much open communication as possible. The ancillary Caregiver needs to know about conditions at home in order to effectively contribute to the care of their loved one. And while direct care may not be possible, there are a number of things that can be done in order to allow them to feel an active part of the care plan.
For the primary Caregiver, offering regular and honest updates on your loved one's condition goes a long way towards accomplishing this. Remember other family members are not there everyday, and do not see the subtle changes that might occur. Allow their input on decisions. You may not always agree, but if the end result is what is best for your loved one, all family will feel better having had a chance to express an opinion.
And for the ancillary Caregiver, one of the few things you can do, is be sure to find a way to give the primary provider some respite. Encourage to have your loved one visit you, or better, go to them periodically. Your family member is giving care 24 hours, 7 days a week. A few weeks from you will be a Godsend to them. By supporting each other in this manner, all Caregivers, regardless of the distances will come to a better understanding of the needs of each other, as well as their loved one.
Catherine Murphy, R.N., has been caregiver to both parents. She can be
contacted at firstname.lastname@example.org
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