Alzheimer’s Answers; Are you ready to be a caregiver?

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Alzheimer’s Disease: Your Questions Answered | PBS NewsHour.  We need all the help we can get in order to make well-informed decisions about any caregiving journeys that might occur in our future.  The attached article shows a snapshot of one adult daughter’s 24/7 caregiving journey with her mother.

Perhaps you’re saying that you don’t anticipate your parents requiring any caregiving assistance in their frail years (perhaps your parents have already passed so no need exists there.)  Do you have any siblings? close friends? a significant other?  If you answered “yes” to any of those designations, the possibility exists that you will be called upon – or you’ll volunteer – to be of assistance to someone who needs help with their activities of daily living (ADLs).

Taking care of a loved one is no easy task.  It doesn’t matter how much you love the person, your patience and your abilities will be tested.  I truly admire the subject of this PBS article.  Rebecca Wyant is the full-time caregiver and guardian of her mother, Mary Wyant, who was diagnosed with Alzheimer’s at the age of 65.  Mary moved in with her daughter in 2006, is now 74 years old, and Rebecca is in her seventh year of personally providing her mother with full-time care.

How does Rebecca do it?  She thought she was prepared for the task but soon discovered that finances, and creative ways of managing her mother’s care, are dwindling resources.  With that said, however, Rebecca states that she is the only person who can provide the care that she can.  She agrees that professionals could provide the care, but absolutely no one could possibly care for mom as Rebecca can.  That part of the video disturbs me a bit, and I’ll tell you why.

Dad, myself and one of his caregivers.
Dad, myself and one of his caregivers.

I was an Alzheimer’s Association caregiver support group facilitator for several years and heard the voiced concerns of those daughters, sons, and spouses, who carried a great deal of guilt on their shoulders for not being able to keep up with the care of their loved one.  They did provide the care initially, and then found their abilities wanting – and their health declining.  They eventually made the very difficult decision to place their loved one in an assisted care setting.

Here’s the story of “Constance” and “Robert.”  Constance first came to my support meeting at the age of 80 having already taken care of Robert at home for the previous three years since his diagnosis.  Constance’s health started to decline due to lack of sleep – Robert’s dementia had no respect for the clock.  Added to that dilemma was the fact that she had no existence outside of her house.  She was trapped!  Her friends abandoned her, all the social activities in which she had participated fell by the wayside, but she refused to move her husband into an assisted care setting, even though she felt they had the finances to support such a move – many do not and have no choice but to provide 100% of the care.  “No one can take care of Robert like I can.  I would never do that to him – placing him in someone else’s care.  That’s my duty as his wife; a duty I take seriously.”

Fast forward one year later, and Constance had no choice but to place Robert in an adult family home with five other residents; it was either that, or she would have been forced to relinquish her caregiving role because, quite frankly, she ran the risk of dying before Robert.  Once she relocated Robert to a care home, the well-trained staff provided all the assistance Robert needed, and Constance could now have the sole role of being his wife.  She visited him almost daily until the day he died one year later.

Constance admitted that she wished she had moved Robert to the adult family home earlier than she had because she realized that being a committed wife didn’t have to include caregiving that risked her own health.  She relished her reprised role as his loving wife when she visited him – none of the other care staff could fulfill that role but her – and the staff did what they do best, providing all the care her husband needed.

This is the nugget I want you to come away with from my above commentary: guilt and obligation are normal emotions that might prevent you from making decisions that may very well be in your best interests and those of your loved one.  Please believe that allowing someone else to take care of your loved one does not equate to you shirking your familial duties.  It does, however, tell me that you know your limits, and you know what is best for your personal situation in the long run.  Additionally, it shows that you value your long-standing role as a daughter/spouse/partner/sibling, more than any new role as a care provider.  There’s something to be said about retaining your given role in a relationship.

Caveat: as I indicated above, finding affordable care outside of ones home is no easy task, and you may have no choice but to provide the needed care for your loved one.  But if you are able to find trusted family or friends who can “spot” you from time to time so that you can enjoy a needed time of respite, please do so.  You’ll be far more able to carry out your caregiving task if you take care of yourself first.  See my article: Caregiver: put on your oxygen mask first.

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