The Reality of a Daughter Whose 61-Year-Old Mother Lives With Alzheimer’s

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I used to think I knew about Alzheimer’s disease. I thought it was a disease that strikes the elderly, a disease that may cause people to forget their names or their family members.

I saw “The Notebook.” I knew what Alzheimer’s was…

Until my mother started to display a number of worrying signs from around age 55. She started to forget basic instructions and denied knowing about certain functions at church or my dad’s work. That’s when I started to understand that what I thought was Alzheimer’s was just the tip of a large iceberg.

Denial was the first part of our reality. And it lasted close to five years. “It’s not Alzheimer’s!” we would say.

“It’s just normal aging and forgetfulness.”

“She’s much better today.”

“She still knows all our names.”

“She knows she forgets things; with Alzheimer’s ‘they’ don’t have a clue.”

Five years of bluffing, denial and trying to appear as normal as possible to the outside world. Few people had any clue about the daily struggles and worries. About trying to convince the world our mom was fine.

Until we couldn’t deny the reality of Alzheimer’s disease any longer…

When a lady who prides herself on her cooking can’t throw two ingredients together, or when a lady who could socialize with any person suddenly can’t string together two words with a friend — then you know things are not as fine as you want them to appear.

She received the dreaded diagnosis: early onset Alzheimer’s disease. Most likely familial. Another reality hit me then — I could carry the dreaded gene as well. Someday that could be my sisters or me.

Every day has its challenges. Days when Mom can’t remember her own children’s or husband’s names, or can’t dress herself at all.

And then she has other days where she seems like her “old” self, which is yet another reality of Alzheimer’s disease for us. You find yourself inadvertently comparing your loved one to the one you used to know. The “perfect” mom of old. “She’s still perfect,” you convince yourself, but in the darkest, most difficult moments, you cry out for the mom you used to know. The mom who could heal all ills and take away all woes.

Another reality is that she can become aggressive or afraid (or terrified). She can be fine one moment and paranoid the next. We haven’t had any major incidences of aggression or paranoia, but the signs are there. I believe it’s only a matter of time.

And even though you know you shouldn’t take things personally, even though you know she has no control over her reactions to you or her grandchildren, in your darkest moments you blame her. You blame her for hurting you, not physically, but emotionally (which I feel can be so much worse). You blame her for forgetting your name or for keeping you at a distance. It’s the disease’s fault. But at your worst, it seems so much easier to blame the person than an invisible disease. Blaming a sick person — that can be a reality of Alzheimer’s.

But beyond the forgetfulness, aggression and paranoia that starts to develop…

Beyond the odd behaviors and mood swings…

She is still just “Mom.”

She’s not a neurological condition. She’s not imperfect or broken. She is a mother and wife, a grandmother and rock. She is Mom, and we will always love her.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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Photos Capture How Dad With Dwarfism and 4-Year-Old Daughter Help Each Other

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Richard Willis, from Yorkshire, England, is just a few inches taller than his 4-year-old daughter, Cherry.

Dwarf and daughter
PIC BY SIMON KENCH/ CATERS NEWS

Willis, 46, has diastrophic dwarfism, a disorder of cartilage and bone development that results in short stature, arms and legs, as well as early-onset joint pain and joint deformities, according to Genetics Home Reference. Because of the arthritis and scoliosis caused by his condition, Willis had to take a medical retirement from his job as the Head of Transport for the city of York in 2006, Caters News reported. He now uses a specialized wheelchair and spends his days taking care of Cherry while his wife Charli is at work.

Because they spend so much time together, Cherry and Willis have formed a special bond.

Dwarf and daughter
PIC BY SIMON KENCH/ CATERS NEWS

Cherry was born nine weeks premature on June 14, 2011 and was only as big as the palm of Richard’s hand. She didn’t inherit her father’s dwarfism.

Dwarf and daughter
PIC BY SIMON KENCH/ CATERS NEWS

Cherry often helps Richard, who stands at 3 feet and 8 inches tall, with daily activities like tying his shoes and doing the dishes. She climbs up on him every morning to reach things on the top shelf of the fridge.

Dwarf and daughter

Our relationship is really special,” Willis told Caters News. “It’s unique and I couldn’t be any more proud of her… We’re like a little double act – we do everything together and I don’t think we could be any closer.”

Cherry started school this month and her father says his having dwarfism has had no affect on how other children treat his daughter.

Dwarf and daughter

I’ve had some tough times but the birth of my daughter was like a breath of fresh air,” Willis told Caters. “Because of the operations I had to have it felt a little bit like I was starting out again because I had to teach myself to walk and all sorts, but Cherry being around made it so special. When she was learning to crawl, I was just learning how to walk again so it really is like we’ve done everything alongside each other.”

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To the PICU Nurse Who Cares for Sick Children (and Their Worried Parents)

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At 2 a.m., you have another energy drink and rubs your tired eyes. Your feet move fast across the intensive care unit floor. You care not only for sick children, but for their worried, exhausted parents as well. It’s just a pillow, just a ginger ale, just you talking to my son and making him giggle — you’re gentle and kind, and I don’t think you know how much it means to us.

Real, raw compassion can’t be faked; it can’t be mimicked with selfish intentions. Compassion is out of love, and when my baby boy came into this world holding on for dear life, I started a journey that showed me the compassionate side of this cruel world. I’ve met people like Amy, people who work late shifts with long hours. People whose feet hurt and whose eyes are heavy, yet you can see the love in them, and for that love I am eternally grateful.

I see you, Amy, and I wish I’d told you these three things:

1. You’re not just a nurse; you’re comfort when I can’t be here. You choose to be the “bad guy” in order to heal these children. You administer shots, place IVs and slowly fill your heart with each and every patient, although they associate you with the pain. I believe you are everything God wanted human beings to be. It is humility, and it is pure love. I believe you’re serving a purpose bigger than yourself. You are amazing.

2. I know you experience the grief of losing the little lives you’ve worked so tirelessly to mend, for nothing more than to see to it that child will smile again. When all efforts are exhausted, and the time comes, you hold families’ hands as they have to say goodbye. That is not for a paycheck. That is love. That is selflessness. You cry for us and stay awake at night for our children, even on your days off. There are just some of them who will likely never leave your mind or your heart.

3. It might wear on you and hurt, and perhaps you question if you want to do it anymore. In the end, you go back, you go back to the little hands and the beautiful heads. You return to the fragile babies and worried parents. It seems you hardly give your heart a night’s worth of healing before you go back to the hospital and allow those sweet children to tear your heart open again, but you do it. I believe you do it because you love it and you love them.

You may think we parents don’t see you. You may think our frustrations are aimed at you, but they’re not. We’re frustrated with what the world has handed us and scared for our child’s wellbeing.

You are appreciated.

I love the extra effort you make to get scrubs with silly faces on them. I appreciate how you carry my daughter’s gift of a flower petal in your pocket. I see that little girl’s picture paper-clipped to your chart. You carry her with you, you carry her home and in the car, because I believe you’re forever tied to this place of healing, fighting and sadness. You’re a part of this side of the world so many never see, are afraid to see and pretend isn’t there. You are amazing, and you have chosen to embrace the fragile ones. You have chosen to shift your energy in order to give and grieve for the sake of a child’s smile.

If you don’t love yourself completely, I sincerely hope you will one day — because to me, that is true beauty.

Follow this journey on Four East Hearts.

The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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Doctor Challenges ‘The View’ Hosts to Figure Out Which Stethoscope Is His

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When Joy Behar and Michelle Collins, co-hosts of “The View,” mocked Kelley Johnson, a registered nurse and the Miss Colorado contestant in The Miss America Pageant, for talking about her career helping Alzheimer’s patients instead of a performing a more “typical” talent, a lot of people were not happy.

“Why does she have a doctor’s stethoscope?” Behar asked when discussing Johnson, insinuating that nurses don’t need stethoscopes. Among the backlash to these comments is the awesome photo below.

Mark Stanley, an emergency room physician and Medical Director of an Emergency Department, posted the picture below, of him with several stethoscopes draped over his body, to the Facebook group “Show Me Your Stethoscope.”

“The many stethoscopes you see hanging off of me in this picture belong to my nursing staff, except for one,” Stanley wrote in his statement praising nurses for all they do. “Perhaps the ladies from The View would be able to tell me which of them is my ‘doctor’s stethoscope’, but they all look the pretty much the same to me.”

Photo via Facebook

His full Facebook post reads:

As an ER physician, and the Medical Director of an Emergency Department, I just wanted to give a shout out and show some support for the nursing profession, and the men and women whose immense TALENT is providing care to millions of sick and injured patients all over the world.
At any given time, I may be caring for 9 or 10 different patients in our ED, or maybe more, and without my caring, considerate, skilled and highly professional nursing staff, I simply could not do my job.
Part of my duties also consist of teaching medical students, and one of the things that I try to impart to them is that nurses are not your minions, they are your colleagues. When they become residents, and later, full-fledged physicians, they will be surrounded by nurses who have many, many more years of experience than they do. I advise them that if they have good sense, they will allow those nurses to help them learn and grow as good doctors. We cannot be everywhere at once. Inherently, we spend FAR less time with each patient than our nursing staff does. A smart doctor listens to his nurses, and utilizes them as extensions of his own diagnostic ability. A poor physician thinks he knows everything.

FYI: my grandmother was an RN (registered nurse), my mother was an RN, and I am very blessed to be married to a beautiful, sweet, TALENTED RN.

The many stethoscopes you see hanging off of me in this picture belong to my nursing staff, except for one. Perhaps the ladies from “The View” would be able to tell me which of them is my ‘doctor’s stethoscope’, but they all look the pretty much the same to me.
Well, you know, except for the purple one…

In less than three hours, more than 14,000 people liked Stanley’s post. Well done, doctor.

Related: What I Want “The View” Co-Hosts to Know About My Children

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When Your Child Can’t Tell You He’s Experiencing Psychosis

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Just when you think you might have a grasp on autism spectrum disorder, other diagnoses can manage to find their way into your child’s life. What happened to my husband Bill and I this past year and a half has really tested our lives and our marriage.

In 2012, I was looking for a new way to help my child. I started researching service dogs, and with the help of another local family plus many volunteers, we raised enough funds to get my son Alec his own autism assistance service dog. This dog was absolutely amazing, but our child was still having trouble. Nothing could stop the downward spiral. Soon, it was like we had a completely different child.

In late 2012, we added an ADHD diagnosis to the mix. In April of 2014, we added epilepsy when we witnessed his first seizure.

A change in school programs didn’t help, and he had become physically aggressive toward teachers, caregivers and even his family — including his little 8-year-old sister. We were in crisis. Alec couldn’t tolerate the bus ride to school, let alone a few hours at his program. The school he attended was the highest-level behavioral program for children with autism in our area. We made the decision to pull him out of school. This lasted for six months.

We now know our child was experiencing psychosis. He just didn’t have a way of telling us.

Children who experience psychosis at an early age are rare. Psychosis is a symptom of mental illness and is on the schizophrenic spectrum (yup…another spectrum like autism!), but childhood-onset schizophrenia can be really hard to diagnose — especially if the child can’t communicate exactly what he or she hears. Alec has moderate severity of autism and low verbal ability to express anything more than his basic likes/dislikes, wants and needs. These obstacles in communication and comprehension could make it near impossible for his mind to differentiate what’s reality and what’s mental illness.

So how do we know he’s hearing voices? Bradley Hospital in Rhode Island confirmed when he’s having a staring spell and you can’t get through to him (even if you call his name several times), he’s focusing his attention on listening to something others cannot hear (they ruled out “absence seizures” which can look similar). Prior to medication, we believe the voices he heard were very negative and caused aggressive behaviors — which is common with childhood-onset schizophrenia.

A psychiatric ER visit and inpatient hospital stay later, we had more answers and medications to help Alec’s functioning and emotional state. With an increase in the appropriate medication, and admission to a wonderful residential school program near us this past May, Alec is now happy, healthy, out in the community regularly and attending school again. We are so grateful for the resources and support we received to get our family to a healthier place. 

Managing his illness will continue to be a challenge  — we may not know until it’s too late if he needs a medication switch because he can’t express what’s happening in his mind. But we’ll learn to rely on behavior to tell us what his voice cannot.

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Why Having a Disability Doesn’t Make Me a Superhero

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How often have we read stories or seen video clips of people with disabilities doing amazing, “superhuman” things? There are blind mountain climbers, people with mobility impairments swimming great lengths and amputees running faster than anyone ever thought possible. Stories like these can bring awareness to a cause and therefore create a wonderful amount of support for said cause. These news stories can portray the positive message that people with disabilities can do great things.

But while there are benefits to running these kinds of stories, there is also a cost. I believe the price we pay for sensationalizing these people is that we send a message to people with disabilities and the general public that being a superhero is the ideal way to “be disabled.”

These truly are amazing acts, but not just because the person doing them has a disability. Having known some of the people who have done these things, I feel I can say that what makes these people noteworthy is their perseverance and passion for what they’re doing. As with most athletes or leaders in other fields, what got them there is their desire to reach their goal and to continue to strive for it even in the midst of hardship. If we place our focus on the disability, I think we miss the point entirely. It takes patience, courage and determination to set any large goal and reach it. We sell ourselves short when we assume that unless our goal is going to capture the attention of the national news media, then not only are our goals not worthy, but this can lead to the feeling that we ourselves are not worthy.

I’m not suggesting people hide their accomplishments or avoid celebrating reaching some seemingly unsurmountable goal. I do think, however, that we should help direct the conversation surrounding these things in a way that points to the hard work and tenacity involved over the focus on the disability. Otherwise, we’re adding to the stigma.

Most people with disabilities, just like most people without disabilities, won’t do these things — not because they physically can’t, but because it isn’t their passion or desire to do so. This doesn’t mean their contribution is any less important or necessary.

The reality is I haven’t done any of those “superhuman” things.  Like so many others, I have a disability, but I am also a mother, wife, teacher and so many other things. But I’m not a superhero, nor do I aspire to be one. I’m “enough” as I am. I’m embracing my life and striving to live and parent from a place of authenticity and wholeheartedness.

If you have a disability and are going about your day-to-day life, you are “enough.”

RaLynn and her family on the beach

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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