December 23, 2020 by jas
Jumping into the caregiver role because “someone has to do it” might be how many of us got our job…caring for our loved one. I know I just fell into it. I was in the doctor’s office when My Love was diagnosed, and I got the feeling partners automatically became the caregiver! An assumption on my part?
It never occurred to me, and no one suggested I ask, “who else could do this?”
I often wonder if I am the only one who didn’t take time to think it through, but I reflect now, years later.
— I did not know any questions to ask about a role I did not understand!
— It did not seem like there was time; I felt instantly I had to be his caregiver.
— I felt designated because we lived together, as if this were the society norm!
— I felt confident I had been able to complete other responsibilities given to me…how hard could this be?
— I had no idea I would need help…I did not know what was ahead!
Looking back, I forgive myself for not looking into it more deeply, but wish now that I had examined options.
I do know now that I cannot do it all, and that I am not less of a person or a caregiver because I need help.
I do know now, that caregiving is a more far-reaching role than I ever anticipated.
I do know now a support team is vital, that we depend on, even lean on, others to get us through the years of challenges.
I have learned that without the help of others in my “loosely connected care team,” I would never have survived. So many have unknowingly been on my team, but they have made all the difference!
From the moment of diagnosis, I needed answers to practical questions, as well as emotional support while I was searching. These are questions that caregivers along with their families and medical professionals must answer.
- Could I adapt to this new caregiving role?
- Where would I get the best information on my love’s disease and then what? Who would help me understand it and the health system we now would be living in?
- Where did I fit in as a person, not a caregiver? Who would I become?
- What legal and financial issues did I need to be concerned about?
- Where would I get the best resources?
A support team for one caring for a loved one with memory loss can be anyone who comes to our rescue when we reach out. We can acknowledge the assistance or respite received…there is no criteria list for ‘help’ except that it meets a need and we feel good about it.
Family and friends want to help. Welcome it and be grateful.
Many connections, opportunities for communication, and conversations, on purpose or accidentally, from family, friends, medical workers, personal acquaintances, including those in organizations who offer financial support, become support, some in response to significant needs and others in the smallest way that the ‘giver’ never suspects!
If you have a team of people who can meet together, a family , close friends of the caregiver or the loved one, or more than one person who can be involved, it might be helpful to have a meeting, to determine how each one can contribute to the care of the loved one in ways that they feel most comfortable. It might be two people or ten people. But the evolving responsibilities can be addressed.
AREAS OF ATTENTION
Everyone, including the original caregiver, should consider and commit to only what they can do.
Who are the best people to take on these responsibilities? It will make a difference where the loved one resides, (and if we are still living under COVID-19 restrictions) but knowing someone is designated for each area relieves the caregiver to some degree.
Who is in charge of COMMUNICATION? To avoid confusion, arguments, or being left out entirely, a communication plan is pretty much essential during the caregiving period. If you would like to see how a computer program helps, check out Tyze.com, created because of the need for a team to be ‘on the same page.’ It helps organize the team and lots of necessary situations.
Who will be overlooking the FINANCIAL aspect of the loved one’s care? Knowing there are costs associated with care and planning ahead will reduce anxiety for everyone. If not covered by government or private insurance, funds for extra services, equipment, and medications will need to be addressed. Know the investment planner, know the banker, consider joint accounts, have proper papers signed. Have POA for finance and property in place.
Who will be DOCUMENT CURATOR, the one who knows where all the important documents are located?
The Power of Attorney for personal; care (health issues) in place. Know where deeds, insurance documents, stocks and bonds informaton, titles, birth and marriage certificates are as well as any trust information. Know legal counsel, and where the Will is located.
Who will be the one to DESICION MAKER? Usually those designated as POA, both for property and for care, have this role, but there are other decisions that must be made and who is in charge of this? If an Advanced Health Care Directive has been written, be sure to have a copy.
DAILY PERSONAL CARE designate. If needed, who will be the one to coordinate meals? Who will bathe and groom loved one? Who will monitor medications.
DOMESTIC CARE designate. If necessary, who will do the laundry and shopping? Who will be driver designate? Who will keep doctors up to date?
Caregivers can benefit from this organizational effort. It relieves stress, and shares the care for the loved one. If you are family or friend in a position to be on a team, do what you can, where you are with what you have.
Reach out to help caregivers if you are able. Gift them with these books of stories of the stuggles and life of a caregiver of one with memory loss. Order from Amazon
Care Team Coordination (c) 2020 Judith Allen Shone