Well, Katie may have had the date wrong—but the concept was right. KATIE IS GOING HOME on Monday, December 15th.
The Provider met with the nursing home staff this week to compile a specific and detailed plan for Katie’s care. I was invited to attend the meeting, and I asked Judene to accompany me because she always provides good perspective and moral support.
When Judene and I arrived, it was immediately evident that KATIE IS EMERGING!
When the Provider began checking down the list–
- The medical bed, air mattress and Hoyer lift will be delivered Friday.
- The Home Health Agency will start on Tuesday. They will provide a nurse and therapists.
- Your caregiver, “Gloria” is very anxious to get started. She is moving in on Friday.
Katie began slapping her leg. “This is how I clap,” she said. And we all clapped with her.
We talked about meals: Gloria cooks very healthy food. What do you like for breakfast?
We talked about treatment and therapy: Gloria can tend to your wounds. She can help you with your stretching exercises.
We talked about visitors: Gloria will be glad to have your church group over to sing hymns.
Everyone is doing what they can to facilitate the transition home and to make the plan work.
- Katie is required to see her family doctor within 5 days—he has offered to make a house call.
- Sam purchased a wheelchair van at auction. It will provide her with more opportunities–many, many more.
- Family and friends have made commitments of support.
Sam and Katie’s home will be hectic for a while. But I believe the plan will succeed because…
From AgingCare.com @ http://www.agingcare.com/
The Overlooked Caregivers No One Ever Talks About
by Connie Siskowski, Blogger President, American Assoc. for Caregiving Youth
Although it was more than five decades ago, the memories of caring for my grandfather as a pre-teen—giving him medication, even bathing him—are never far from my mind. To this day, 54 years later, I can still feel his cold skin as I went to give him his 2:00 am medication.
At that time, words like “abandonment” and “trauma” were not often used to describe childhood experiences.
I left home to become a nurse and grew professionally in my career. However, the traumatic experiences of caregiving and missing out on some of my childhood left me less than grounded.
In 1998, at the First International Conference on Caregiving in London, I learned about the challenges faced by youth caregivers and began to understand the significance of those experiences.
That summer, I went on a mission trip with teens from my church—one boy’s dad had recently died and another girl’s dad had pancreatic cancer. Many of the other kids also had concerns about their parents and grandparents’ health.
In 2001, my new husband, encouraged me to return to school to get my PhD, thinking it would increase my earning power. During the research process, I discovered that there was—for the first time in the U.S.—an unusually high number of middle and high school students who were dealing with family health conditions. More than a third of these children were negatively impacted at school. A few more years would pass, and the data (along with some media attention) revealed that there were between 1.3-1.4 million caregivers, ages 8-18 years old in the US.
In 1998, I had started a nonprofit organization to provide volunteer support services to people who were homebound and their caregiving families. Once the analysis of my research data was complete, I was compelled to now turn my attention to youth caregivers. I thought that, supporting them academically and personally, and strengthening their families, could perhaps ameliorate the sacrifices they were making because of their caregiving responsibilities.
Thus, the Caregiving Youth Project was born in the fall of 2006, at one middle school in Boca Raton, FL. Professional staff facilitate support groups, offer classes on life skills, and provide other resources to ease some of the responsibility and give youth caregivers the chance to be kids.
Over the coming months, I will be sharing with you the experiences and insights of these school-aged caregivers and the men and women who help support them in their endeavors.
I really identify with Connie’s comment, “The traumatic experiences of caregiving and missing out on some of my childhood left me less than grounded,” although in my case, I would have to change the word “caregiving” to, “having a dying parent.”
When at a Caregiving Conference a few years back, I attended a hospice workshop. A comment was made about the support systems available to children. When that statement was made, I found myself suddenly in tears. Oh…if they would only have had something like that when I was a kid!
Like you, Connie, I grew up during the 50’s and 60’s. When my father was diagnosed with non-Hodgkins lymphoma, the doctor recommended that he not be told that he had a fatal disease. My mother did tell my brother and me (15 and 10, respectively), and we were instructed not to tell anyone. It was a “secret” that was never discussed. Yes, it was traumatic, and I absolutely felt abandoned.
Thank you for focusing your attention on the children and their needs. Thank you for helping them maintain their childhood so they do not have to “miss out” on those years as did you and I.
I often hear caregivers express different perspectives about their own children’s involvement in the caregiving situation. If we are embroiled in a difficult experience, of course we don’t want a like-burden for our kids. But is it really a good idea to shelter them from all responsibility?
As I said in What to Do about Mama? “Baby boomers are on the precipice—getting ready to fall off and land firmly on the backs of our children’s generation. And they are so young! They are, after all, our children!” (WTDAM p.1)
I think I can safely say that none of us wants to be our children’s
Some folks see caring for parents as a given:
- “I’m not really sure what I thought about caregiving in the beginning other than it was what needed to be done, and as their children, this is what we do for our parents.” (WTDAM p.86)
But, in spite of any stated “willingness” to assume caregiving responsibilities, we are resolute in our desire to not saddle our own children with like-obligation.
- “I know I don’t want the roles to be reversed and hope I never to get to that point.” (WTDAM p. 115)
- “Given my experiences, I just hope I will have saved enough money so I can hire help, too, should the need arise. I certainly don’t want my kids to end up with this much responsibility for my later care.” (WTDAM p.120)
- “We want to minimize the impact on our daughter, who is five hours away with a very busy young family.” (WTDAM p.187)
Yet others point out their perception that caregiving was a positive example for their children, expressing the hope that the experience would contribute to their children’s personal growth.
- “I feel it taught my children many valuable lessons as well.” (WTDAM p.57)
- “I think it was wonderful for my two children to witness how we cared for their grandmother. We always gave her respect and showed gratitude for all that she had done for us. She needed us, and we were there for her. Although my children (young adults) were involved in the process, I probably would have involved them even more.” (WTDAM p.196)
Some were pleased with the contributions their children made.
- “Each of our adult children had an area in which they were able to offer help and advice; each offered to do what he or she could do from a distance. Our family has drawn together as we helped each other through this.” (WTDAM p.146)
Others were not.
- “I was disappointed that my children did not develop a more loving relationship with their grandmother.” (WTDAM p.171)
- “My family had difficulty coping with the time I spent on my mother’s demands. They felt resentful at times. My children have their own lives now; they support me, but not my mom; they visit only at my request.” (WTDAM p. 219)
Some children expressed gratefulness to their parents for taking care of their grandparents.
- “I know from a personal perspective (and one of NOT being a full-time caregiver) that I enjoyed having my grandparents living with my mom. I didn’t worry about them being alone or having to care for themselves as they got older. Plus, it was enjoyable for me having the whole family together under one roof when I visited. As far as my grandparents were concerned, it was a very pleasant experience for me.” (WTDAM p. 139)
- “My daughter said, ‘Thank you, Mom, for taking care of my Grandma and being such a good example for me.’” (WTDAM p. 28)
In my own caregiving experience the greatest amount of support that we received for immediate and unplanned caregiving needs was from our son and two daughters. They involved their grandmother in all their family functions, brought their children frequently for visits, picked her up from the senior center when needed so that I could attend support group, and sometimes either visited or took her to their homes when we had no other coverage. The girls sometimes shopped for her when she needed clothing items or OTC medication, and returned and exchanged the items if they weren’t “exactly” right. Their support for their grandmother went well beyond what we had expected.
It fulfills me to know that my husband and I were good role models for our grown children. Keeping their interest in mind, I saw caregiving as an opportunity for a “teaching moment,” (well, actually more than a moment), where they would learn and internalize the real meaning of family commitment (and never did our children disappoint).”
We are glad that our grandchildren were able to know and love their great grandma, and that we gave my husband’s mother the gift of our children and grandchildren. We are proud of the love, support, and appreciation they showed her.
- “Most importantly, at least from my perspective, was that she was central to the active life we were blessed to have with our family—three of her grandchildren and eight of her great grandchildren. She was always concerned about whether the little ones would remember her after she died. A short while ago the oldest said to me proudly, ‘I was the last great grandchild to talk to Great Grandma.’ She would be pleased.” p. 206
So, no matter the perspective, ultimately our children will experience pain related to our decline and our passing. They will discover that they cannot control the process of dying. And although we cannot, nor should we, protect them from the responsibility that lies before them, maybe we can at least prepare well enough that their road will be a little smoother to travel than ours has been.
Photo and original text in Spanish by Guillermo Peña.
Translation to English by Sergio Cadena
My dear girl, the day you see I’m getting old, I ask you to please be patient, but most of all, try to understand what I’m going through. If when we talk, I repeat the same thing a thousand times, don’t interrupt to say: “You said the same …thing a minute ago”… Just listen, please. Try to remember the times when you were little and I would read the same story night after night until you would fall asleep.
When I don’t want to take a bath, don’t be mad and don’t embarrass me. Remember when I had to run after you making excuses and trying to get you to take a shower when you were just a girl?
When you see how ignorant I am when it comes to new technology, give me the time to learn and don’t look at me that way … remember, honey, I patiently taught you how to do many things like eating appropriately, getting dressed, combing your hair and dealing with life’s issues every day… the day you see I’m getting old, I ask you to please be patient, but most of all, try to understand what I’m going through.
If I occasionally lose track of what we’re talking about, give me the time to remember, and if I can’t, don’t be nervous, impatient or arrogant. Just know in your heart that the most important thing for me is to be with you.
And when my old, tired legs don’t let me move as quickly as before, give me your hand the same way that I offered mine to you when you first walked. When those days come, don’t feel sad… just be with me, and understand me while I get to the end of my life with love. I’ll cherish and thank you for the gift of time and joy we shared. With a big smile and the huge love I’ve always had for you, I just want to say, I love you … my darling daughter.
An additional comment:
If the young woman really “sees” she realizes that she is looking into a mirror that reflects her future.
I can identify with what the older woman is saying (especially about technology), but would like to add a thought of my own. Maybe some of you would like to make additions, too.
“When as your mother, I express an opinion or make a suggestion, please don’t show a lack of regard for my input. Replace the “‘I’ll do it my way” response with, ‘That’s a good idea,’ or ‘That’s an interesting thought.’ Do you remember how I listened to you and gave you support and encouragement?”
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.