rosie1 reports that her mother, who has dementia, is being transitioned into a nursing home full time. The director of the facility made the “suggestion” that the family is too “high maintenance.” Because Rosie’s brother reported the remark to Rosie, she is examining her own behaviors and questioning why she may give the impression of being over-bearing. She asks how she can build a positive relationship while continuing to advocate for her mother.
Advocacy is an important part of your responsibilities as a caregiver. It’s a matter of striking the proper balance. I have had experience as a caregiver advocate, and I write about the topic in my book, “What to Do about Mama?”
When my mother-in-law was in a nursing home for rehabilitation after a pelvic fracture, she would press her call button when she had to use the bathroom. (She had not yet been cleared to go to the bathroom alone.) She would then wait and wait and wait, until she could wait no longer, and would then have to urinate or have a bowel movement in her diaper.
I spoke to the social worker about the issue and was told that my mother-in-law was so “quiet.” My point exactly. When a “quiet” person rings the bell because she has to go—you can count on the fact that she has to go. Why should a mentally competent and continent woman have to suffer the degradation of soiling themselves? I was told she would be put on a 15-minute watch, but I replied that was hardly necessary. She just needed to be helped in a timely fashion when she pressed her call button to go to the bathroom (something she did not do often).
The need to be an advocate is not necessarily a criticism of the facility where a parent is placed. It’s just that it is easy for something to slip by or for mistakes to be made, and caregivers must be on guard to prevent problems, misunderstandings, and omissions. To be an effective advocate, you need to educate yourself about different aspects of caregiving, health, care plans, and medication.
One helpful tool is to develop a personal profile to be posted in your loved one’s room that provides information about his or her personality, preferences, and interests. (It’s a nice touch to include a picture.) This gives staff more understanding of their charge as an individual and provides topics for conversation. Personal Profiles personalize the individual to staff and are also great conversation starters.
Also, when placing your loved one in any type of living facility, get to know the staff and establish a positive relationship with them. No matter how good the facility is, there will be situations that require your advocacy. The better the relationship you have established, the better the cooperation you will (hopefully) find.
As one of the caregiver’s stated in my book: “I found that my primary role, once my father was admitted to the nursing home, was to model the behavior my mother and I expected of the staff when we were not there. By that I mean how we spoke with him, how we honored his requests and anticipated his needs, how we treated him with a great measure of kindness and love, respect and dignity. It didn’t take the staff long (all three shifts) to grow to love him and treat him as well as we did every time we were there. It also helped that we recognized the hard work the nursing staff did every minute of their shifts by taking over for them with my father or by bringing them little treats from time to time. Always, every night before we left, we thanked them for their care of him.”
My grandchildren’s Grammy, in other words—my counterpart—passed away on Father’s day. Up until the last half year of her life, she was a vital woman and a go-to grandma. She and her husband were married for nearly 44 years–two months less than I have been married to mine. He wrote her eulogy, a beautiful tribute to his wife and their marriage. The eulogy was hard for him to deliver at the funeral; he did it, but broke down. My 6-year old granddaughter sat beside me, my arm around her holding on tight. She cried when she saw her grandfather cry. My 3-year-old grandson was a little wiggly in my lap; he being too young to understand.
Really, none of us “understands.” Sure we know that we all live, and then we all die. But we would drive ourselves to madness if we tried to make sense of the who’s and the how’s and the why’s, or the “fairness” of it all.
It’s also so hard to know what to say to someone who is unexpectedly diagnosed with cancer and decides not to undergo treatment. So I tried to express my feelings by telling her:
“I am thinking about…
how overwhelmed you must have felt at the seemingly sudden onset of your disease;
how difficult it has been for you to decide what path to take;
the strength of your convictions in deciding your course of action;
your incredibly difficult decision and the courage of your choice;
how you are living life on your own terms;
the wonderful job you have done raising your children who have pulled together in providing support, in respecting your right to choose, and in demonstrating their unconditional love for you;
how much your daughter loves you;
how I hope my son is able to tell you how deeply he loves and respects you, but that if he cannot find his way to speak of his emotions, that you will trust me when I say that he does;
how I will always tell our grandchilden how much love their Grammy has for them and how much joy they have given you.”
And then, at a later date, when the end was drawing near, I sent:
“A Heartfelt Message”
You have given our family a precious gift—YOUR DAUGHTER.
Your kind and gentle nature lives through her.
You have instilled in her the values of love, patience and honesty.
And so it passes—from mother, to daughter, to granddaughter.
Strong women, all.
I can only hope that these words somehow helped. I think they are what I would like to hear.