by Leo Notenboom
Washington, USA
My 87-year-old father has Alzheimer’s disease, is profoundly deaf, and has difficulty walking. In recent years, my 82-year-old mother cared for his slowly increasing needs, carefully assisting, guiding, and reminding him through his daily life.
Early in 2002, I convinced my mother to have someone help with my father one afternoon a week. My mom and I began spending Thursday afternoons together, away from the constant vigilance of caring for my father. Kathleen, a caregiver recommended by a friend, spent the afternoon with my dad.
Getting my father to accept what he called “a baby sitter” was a challenge, but Kathleen remained patient. Communication was difficult, but she persisted, learning the tricks and nuances that allowed her to establish a rapport with him.
Last November, my mom became very ill. That month, Kathleen’s weekly four-hour visit became frequent day-long visits to help monitor both my parents. She continued working three nights a week at a nursing home and attending school to become a certified nurse’s aide.
It became clear that the stress of caring for my dad was contributing to my mom’s illness, and we decided it was time for him to move to an assisted living facility. The depths of the connection developed between my father and Kathleen became apparent when I talked with him about living elsewhere.
After the expected protests, he surprised me by eventually agreeing that he’d need to move. I was doubly surprised and touched when he said, “I like Kathleen. Who knows, maybe I could move in with her.”
My mother continues to live at home, but two emergency surgeries and a hospital stay has left her extremely weak and unsteady. We’re fortunate in being able to provide the 24-hour care and monitoring she needs to keep her safe while recuperating in her own home with her dog keeping her company — and Kathleen, of course.
Kathleen is virtually a member of our family now, spending four 24-hour days each week providing the care my mother requires. When my mother and I discuss the necessary parade of different caregivers through her home, we return to Kathleen and how much my mother appreciates and trusts her. “I like Kathleen,” she told me recently.
I’m an only child, and I learned early on that my wife and I can’t shoulder the burden of caring for both my parents alone; it’s too much. My parents are immigrants, so any relatives who might help live on another continent.
Kathleen fits my family into her life now, when we need her the most. I’m blessed to have her help in this terribly difficult time. She has won my parents’ hearts and my trust. I’ll always be incredibly grateful to her, and yes, I like Kathleen, too.
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This story was originally published in HeroicStories as “When We Need Her Most”.
Postscript
From the author, June 30, 2014.
The story was written and submitted about three months prior to its original publication.
My mother passed away on May 4th, 2003. We had arranged for in-home hospice care, so Kathleen, my wife, and I were all there at the time. (As was my mother’s dog, an important part of her life.) Kathleen remained instrumental in helping us with the many details of wrapping up a household.
My father moved into an assisted living facility for a few months, but fell and broke his hip about the time this story was written. He spent the remainder of his life in an excellent nursing home, passing away on November 20th, 2007, at the age of 91.
We were never really certain if he ever understood that my mom had passed. At various times, we heard him clearly confirm he knew, and clearly confirm he had forgotten. We didn’t remind him. Alzheimer’s is a cruel disease. Physically, my father recuperated from the fall, but the mental debilitation was slow but steady.
Kathleen finished school and received her CNA (Certified Nursing Assistant) certification. She went on to become a phlebotomist (the folks that draw blood in hospitals and clinics), which she’s done now for for many years.
Kathleen’s first grandson was born two weeks before my mother passed away. The last photos of my mother documented some of her last smiles when she was allowed to hold the two-week-old infant.
When my father passed, my wife and I had some warning and were able to spend the night before his death at his bedside. The one person who we knew would want to know beforehand was Kathleen. She was able to take some time off of work and join us for most of our vigil to truly complete the story.
What a beautiful story. It made me cry!! You were so lucky to find Kathleen. Truly an angel to your family.
A beautiful and very touching and inspiring story.
Loved this story. Death is one of those stages in life that we try too hard to avoid, at least in my opinion. Having the opportunity to say goodbye is very important.
What a blessing Kathleen is to all the lives she not only touched but uplifted.
I care for my wife who is 63 yrs old now, while I am 67. She has had Alzheimer’s disease for about 8 yrs at least. She is not very functional I have to do everything in the household department. She does try however to be helpful.
My health is in not in tip top shape. I still work full time at home and collect my SS and Medicare. My wife just got on Medicare and is on SS Disability. So medical Insurance and money are not large problems. We do not have enough for any out of home care. I wish I could think of a day when it will be all over but that will probably be when I am gone.
I like Kathleen too.
I would strongly encourage you – and anyone else in a similar situation – to seek out help from local support groups and agencies. Very often there is help available out there. If nothing else I would strongly recommend looking into respite care, which is essentially how Kathleen came into our lives. Getting away from the relentless burden of caring for someone with Alzheimers even for a few hours a week can help immensely. Ultimately it was too late for my mother – I am firmly convinced that caring for my father is the ultimate cause of her death. Please reach out for help – from your family, from your community – so that the same need not happen to you. My best wishes to you and your wife.
Marc,
I whole-heartedly agree with Leo on this. If you haven’t already please call the Alzheimer’s Association. They have a 24/7 hotline you can call. My father died in February the day after he turned 94. He was diagnosed with Alzheimer’s several years ago, plus he lost his vision. He was home until last August. First he was in the hospital and then went to a nursing home. In October we were able to move him into a brand new group home (5 residents, around the clock care) where he seemed much happier. The stress on the family caring for someone with this disease can be overwhelming with out help. It can be compounded (as was in our case) by family members who refuse to accept outside help until things get out of control. Please don’t wait. There are many wonderful resources available. Please take advantage of them. In our situation it was a tremendous help. Leo, this was beautiful story that brought me to tears.
Alzheimers is indeed a cruel disease.
It’s so great when you can find someone who is so caring and so reliable. Such people are gold, and great to have around. I hope she is fulfilled and happy herself.
i am in hospice care at home now and want to give a shout out to all of the nurses, drs. helpers, chaplain, companions that come to me so willingly and give of themselves to comfort those of us who need them so much. God bless you all..Eva
I live in a retirement center in North Florida and here we have a health center for when we become in the need of constant nursing care. We also have a special unit for Alzheimer and dementia care.
We have a very dedicated nursing staff from nurses aid’s to LPN’s.
Some of them have been here for many years, like Kathleen was for your family they are here for us.
I have two siblings and new that I would never put my brother or sister through what we did with my grandmother.
This was a very well written story about Kathleen and made me cry and realized that I am very lucky to be where I am and have people like her to take care of me as I get to the time I will need a Kathleen in my life.
God will bless her for her dedication.
Beautiful story! And — I like Kathleen too!
I can relate. I left fulltime work to care for my mother for the last 2 1/2 years of her life, as my father was unwilling/unable to care for her. It was the BEST 2 1/2 years I ever had with Mom, and to this day, I don’t regret doing it; I have many wonderful memories of the time we shared. She passed away after having complications from open-heart surgery; all 9 of us still miss her, and it’s been many years since she died.
I also took care of my father for the last couple weeks of his life. He chose to move to Florida after Mom died. During a visit to him, I realized that we needed to bring him home to Missouri, to be with his family again. My two brothers “did the honors” of getting Dad back home; we moved him straight to an independent living facility. It wasn’t long before he was moved to the nursing home part of the facility, due to his inability to walk. He subsequently suffered a serious health crisis, and my siblings and I decided that I should take over his care at the facility, along with the assistance of Hospice care. My sister, a nurse, flew in to teach me how to do bedside nursing care for him. It was the best thing we could have done for him; he passed away with his family at his side. The people from the Hospice organization were the most incredibly kind and supportive group of people that I have ever known; it made dealing with my father immensely easier.
We don’t have our parents anymore, but my siblings and I will never forget them. To those of you facing the future of caring for aging parents, I wish you all the best. Godspeed to all of you.
An inspiring story, Leo…my dad lived to be 96 and refused to leave independent living in West Palm Beach, FL. I think he’d have made it to 100, if he hadn’t slipped on a bathmat, and hit his head on the bathtub, knocking himself out. They think he had a heart attack while he was unconscious, and died during the night. He had wonderful part-time nursing care there, and I only wish the same for everyone else who lives that long. Dad was one of the lucky ones who had all his faculties up until almost the very end. We should all be so lucky!
My husband and I cared for my parents, both of whom had Alzheimer’s, for the last 7 years of their lives. For as long as we could, we cared for them at home, until they had to go to a nursing home – my father, due to a stroke; my mother, due to my husband’s back surgery which meant he was not able to help Mom shower or dress while I was at work. I give great thanks for a beloved neighbor who voluntarily told me, “If you and your husband ever need a sanity break, I’ll watch your parents for you.” We did not abuse this offer, but it was gratefully accepted at appropriate times.
Leo,
Ook al heb ik je verhaal al eerder gelezen, maanden geleden, het raakt me nog steeds. Ik heb het doorgestuurd aan mijn beste vriendin, die een maand geleden haar moeder naar het verpleegtehuis moest brengen. Wegens Alzheimer. Bedankt dat je het verhaal opnieuw met ons hebt willen delen.
Even if I read your original story some time ago, it touches me ever again.
I forwarded it to my best friend. She is at this very moment in the situation you were many years ago. She had to bring her mother (89 years old, Alzheimer) to a nursing home, a month ago. And yes, her mother does not know that my friend is visiting my wife and me, 700 km from her home. In Europe, that is very far away…
Thank you for sharing this story again.
Romke
I had to read it slowly, but I was able to read the Dutch. You see, my parents described in this story were also from Holland. I love that it touches people there as well.
Thank you, Leo for this very personal story. I started out as a CNA and have been an RN for the last 15 years taking care of our elders who can longer take care of themselves. I love them dearly but, my greatest wish is that they do not need me and they put me out of a job.
Thanks, Leo, for publishing the update. It was special to know what happened after the original story! I helped care for my mom for a bit, under slightly different circumstances. She was 85, and suffering from not Alzheimer’s but senile dementia. For a time, I dressed her breast (she had breast cancer, but didn’t know it because of her dementia — an ironic saving grace); and helped with a few other things. Then she would fight my doing anything — because she didn’t realize she needed it. “Out of sight, out of mind.” No pain, thank goodness! The refusal to let me do anything (physically fighting me sometimes), and the fact that she couldn’t cook anymore without perhaps burning the house down, resulted in outside care being brought in, and meals. Also, the breast bandaging needed more attention than I could give. It was interesting that, even though she couldn’t cook, etc, anymore, her life-long “habit” of caring for guests, including offering lunch if they happened to be there, did NOT get masked by the dementia. Giving was an ingrained part of her.
On a technical note: I prefer the comment box to be at the top of the post area; and order of posts to be newest to oldest, not the reverse, as you have it. 🙂
Nice to have the stories coming again; thanks!