“I will never see my daughter graduate college or walk down the aisle”. “My husband doesn’t recognize me anymore, and pushes me away”. “I will never see my son take his first steps, and he’s three years old”. These are just a few realites many families face year after year, as they are hit with the heartbreaking news
that one of their loved one is diagnosed with a debilitating disease that may render them helpless. From the common , yet still devastating, Dementia to the rarest like Anti-NMDA (N-methyl D-aspartate) receptor encephalitis, (made famous by author Susannah Cahalan ) families are being charged with the responsibility of caring for their beloved, in ways they may have never expected. Imagine, instead of baby proofing your home for a curious toddler, he’s not walking, crawling or calling you “mama” due to his neurological disorder. Or your husband of 40 years, now relies on you to change his diaper when he soils himself, or you are re-teaching your 30 year old daughter how to wash her hair.
As November is National Family Caregivers Month, WMSDF would like to do our part in recognizing those family members who choose to the primary caregivers for their loved ones.
For the past six years, I have worked closely with several families providing support, resources and respite for family members of an ill, or recovering loved one. No matter the onset, be it from birth, adolescents, or late adulthood, the response is always the same. What do we do now?
Some families choose to have other people care for their loved ones in specialized residential schools, in-patient care facilities and assisted living institution. Others choose to keep their loved ones home, while parents, siblings and even
children became the primary care giver or coordinator of care teams. Lay persons become well versed in medical lexicon and can recite the names of prescriptions without skipping a beat. You may overhear them debating on the phone for hours to get approvals for procedures, or a needed intervention from their insurance provider. I’ve helped to memorize doctor’s appointments and keep track of medicine dosages to insure that we are on track with the treatment plans. Terms like NG tube (Naso-gastric tube: a plastic tube inserted into the patient’s nose and down to the stomach making feeding easier for those unable ingest food orally) replace apple slices and chicken nugget happy meals.
It is a tremendous undertaking not only emotionally, but mentally, physically and spiritually. The Caregiver Action Network recognizes this growth in home-care by family members and it’s mission is to “promote resourcefulness and respect for the more than 65 million family caregivers across the country.” If you or someone you know is a family caregiver, please accept our warmest thanks for all that you do and…
- Remember that you/they are not alone! Seek the support of other families who may offer an understanding ear, new resources for care, or advice on how to cope.
- Give yourself/them some credit for all that they do. I can speak first hand, this is one of the hardest and most demanding jobs you can ever do, my exception is I get to go at the end of the day. Again, take advantage of respite hours and allow help in.
- No one can do it all alone so be willing to accept offers of help. There is no shame in needing or accepting aid or respite.
- Take care of you too! You are no good to anyone else if you yourself are not healthy. I unfortunately learned that the hard way, you need to take time for yourself.
- As we know, the emotional toll can be staggering so be sensitive to the signs of Depression. Again, you are only a help to your loved one when you are well, seek professional help.
- Get Organized! Keep your loved one’s legal documents and medical files are easy to find and well documented.
- Also, learn how to communicate effectively with doctors and care staff, this can save you time and energy.
- Keep an open-mind to new ways to care for your loved one. We may all think we knows what’s best, but be open to trying things outside of the box. Trust me, you never know what doors it may open.
-Adapted from the CAN Top Ten Tips