Alzheimer’s disease is one of the top 10 causes of death in the United States, and among these diseases, Alzheimer’s remains to be the incurable one. However, the absolute terrifying thing about it is the fact that “every 66 seconds, a person in the [US] is most likely to develop the said disease.”
Hence, as forecasted by the Alzheimer’s Association, the number of Americans living with this disease can increase up to an alarming 16 million in total by the year 2050. In return, the need for caregiver services in Chicago and all over the US, will blow up.
Setting aside the figures, the most disturbing thing about Alzheimer’s is how it affects the families, themselves. This is particularly because “Alzheimer’s is a lion in its own jungle, a predator that will slowly kill its prey, and the sad part is, there’s no way out of it.” As the actor and Alzheimer’s disease activist, Seth Rogen, had once said on his fight against Alzheimer’s disease,
“I had no idea that someone that young could even get Alzheimer’s. The speed and aggressiveness with which it attacked was something I really didn’t have any context for… My image of it was like, you forgot stuff. But that is really the tip of the iceberg. You forget how to walk and move and talk.”
What most people know about Alzheimer’s is that – it’s a disease which results in memory loss. And that’s basically it. But the truth is, it’s more than that. It’s something beyond forgetting, as a matter of fact, it robs you of your own life.
But how do people cope with it? How do the families, themselves, deal with such a disease? Even more so, how does it affect a home caregiver – those who can directly see the disease’s effects to the patients, who may possibly be their loved ones as well?
It takes genuine acceptance to win this battle
In her blog, she talked about her mother fighting a battle far and wide after she was diagnosed with Alzheimer’s. She also talked about her struggles as well as how important it is for them to accept the entire matter.
According to Rena, it was a losing battle right from the start; but regardless they constantly fought it. For her, what matters most is keeping her mother happy, safe, and secure despite the entire ordeal seeming so hopeless. After all, Alzheimer’s is almost like getting a death sentence – it is the only disease that can never be prevented, slow downed, or cured.
Nevertheless, Rena knew she had to move on, she had to protect her mother and make her happy and comfortable as possible.
Of course, this did not make it easier for them. There were times that she and her mother would even fight about bathing or eating. She even has to convince her mother that having Alzheimer’s does not equate to being dumb. It was a tough fight, because her mother was feeling helpless. It’s what she struggled hard with – the very thought that the person she loves most is slowly fading away right in front of her very eyes.
It was exhausting. But she’d often be rewarded by the simple expressions that her mother makes, whenever she sees her. It was the kind of appreciation she treasures most.
When asked about how she made every moment of her mother’s life worthwhile, she replied with an honest response:
“I don’t think that it’s possible to make every moment of their time worthwhile. I think that you do your best to make ‘MOST’ of their moments worthwhile and you forgive yourself for the rest.”
People never know what it’s like to be in Rena’s shoes – but from her eyes, you’ll know how brutal Alzheimer’s could be to the patient, and as well as to their family members. Hence, one should accept the battle that they’re going to fight through and to make everything worth it.
What does Rena want to tell the world about Alzheimer’s?
Rena wants everyone – particularly those that are directly affected by Alzheimer’s (whether you are a family member, a friend, or a normal citizen) – to know that:
“There are so many things that I would like people to know about my experiences. The most important thing would be to plan ahead for your future. Don’t leave it for your kids to figure out later. Be realistic about what the future holds and make a plan for it.”
It’s not about the loss, It’s about how lucky you are to have been with them
Allan felt it all – stress, grief, and depression – when Clare was diagnosed with Alzheimer’s. He knows that this disease does not take survivors. He knows, someday Clare would leave him because of this disease.
As a husband, he ought to take care of his beloved. But it was unavoidable as there were days that they’d fight over household chores, given that Clare was having a hard time retaining information over time and was still in denial. As such, Allan made tough, painful decisions. One of which, was stopping his wife from driving.
Among the many effects of Alzheimer’s to someone is to be impaired at some point, and as Clare’s condition worsens, Allan took it to himself that it wasn’t safe for her to drive. He knows he needs to prevent accidents from happening; either her being injured or her causing damage/s to anyone’s property. In the end, he knew it was for the best – but it didn’t make it easier for him for he found it hard to take someone’s freedom over something.
As Clare’s health declines even more, Allan decided to take her to an Assisted Living Residence (ALR), a place where they provide personal care support from meals, to bathing, to medication management, to transportation. He did it for her to be taken care of by highly trained people and for her to live a good quality of life.
Despite all the hardships they were experiencing at that time, Allan said that he wasn’t ready to give up on his lovely wife. He said,
“No, there was never a time when I felt like giving up. This was my best friend, my wife, my lover, the mother of our children who was slowly dying in front of my eyes… no way could I ever give up on helping her to be as happy as possible for as long as possible.”
It can be said, that his struggles to help Clare in her remaining days was worth it. Because, according to him,
“…the hardest part was just watching my beloved wife of nearly 50 years decline more and more, eventually reaching the point [when] she didn’t know who I was. [However,] the most rewarding part was simply helping my wife as much as I could to enjoy the remaining time she had left.”
How does Allan cope with Alzheimer’s?
Allan encourages family members of an Alzheimer’s disease patient to get a support group or a hospice care, to help them live through and to be able to prepare for the future. So when the time comes, one would not think about the loss – rather, the privilege of having been able to spend moments with them through all the years they’ve lived.
Because the truth is, it’s painful to see them leave.
Stop stigma, Get into their world and build connection
It was a decade-long battle for them, which, like most, ended up in her mother’s death in 2012. With this experience, Ann moves forward in life by helping others, who are also a victim of Alzheimer’s (both patients and their family members). She knows that Alzheimer’s awareness is a need in today’s generation.
Ann has left a few regrets even months after her mother’s (Marilyn) passing. She felt the so-called, “caregiver guilt.” She felt remorse for not being able to visit her mother often while she was on ALR, for not being patient enough with her, and for having made mistakes over the years that they were together. It left her saddened and guilty, as she was not able to do those things better.
But what Ann has really learned over the years, especially when her mother was diagnosed with Alzheimer’s is that – it makes a difference to talk about this particular topic. Because if not, denial and fear will fill in the gaps.
Stigma of Alzheimer’s disease has been a common issue of mental illness, and that very thing makes it hard to deal with something so serious. It leaves no connection to bridge a family to the patient. As Ann recalls,
“My mom and I had always been very close, but when Alzheimer’s entered our world, our relationship suffered. Frustration, fear, and anger plagued both of us, and it took a toll. For me, gratification came later. Even when my mom could no longer communicate verbally, the connection we had was deeper than I knew possible. Ultimately, our bond grew exponentially in spite of – and maybe even because of – Alzheimer’s.”
At such times, a family needs to understand the person deeper to get into her world and eventually, build a strong connection with her.
Somehow, that’s what Ann has been pushing through in her advocacy. To educate people and let them understand how Alzheimer’s works for both the patient and the home care partner. She knew that it’ll help them enjoy more moments together, and avoid further suffering.
What does Ann wanted people to realize about her and her mother’s Alzheimer’s journey?
Now, Ann is actively spreading the word to the masses, and what she’d want to leave to those families, who are touched by this thief of a disease is,
“Look for and create moments of joy with your loved one. I will forever treasure the memories I made with my mom, even in the late stages. Remember that the essence of the person you’ve always known and loved is still there. There will come a time, when you will need to venture into their world to make that connection, but it will be worth the effort.”
Live and laugh with them – Because it will all be fine
Vin and Anna’s journey with Alzheimer’s seemed a breeze, as they have both found a way to live through it – by means of music and a good laugh. They’d often sing – with Anna initiating – and spend the most days having fun.
But when asked about what was the hardest part of their journey, Vin admittedly replied,
“The hardest part for me was to experience the role reversal. I had to become ‘the parent’ and make all the decisions concerning Mama. I also had to take charge and always be in control and become a very strong advocate. This was a role I was new at, and at times, [it] was overwhelming.”
Moreover, as a person who’s going through bad times and would often feel hopeless, Vin also added,
“Of course, there were times when I felt like giving up. I wanted help from family, but there wasn’t any help from them. I always ‘checked in’ with myself to see if I wasn’t going to be the best me that I could be before my visit. If I wasn’t ‘strong enough’ on that day, I’d have to honor that feeling and stay home. I learned that if I wasn’t ready for the many moods and challenges, it was better that I don’t see her. I’d only upset her and it would be bad for both of us. I would also do deep breathing, positive thinking and remember better times and remind myself of her happiness when we’d spend time together.”
What Vin and Anna would want to leave people with?
In light of spreading Alzheimer’s awareness, they recorded videos of their bonding times on his visits. They are up on YouTube, where one can see how happy Anna is, regardless of having been touched with the incurable disease.
Surely, they are an inspiration to people that are going through the same journey.
While it is true that Alzheimer’s is a thief, an incurable disease, and a slow process of death – the stories above from different home caregivers can attest to the fact that it’s not something that can wreak havoc in one’s family. It is not a reason to avoid the person, to leave it be because he/she is dying.
Because the truth is, it’s an eye opener for everyone. It is a reason for them to live even more; and also a reason to spend more times with their family – so they can laugh more and worry less.
From here, we’ll leave you an inspiring message as worded by one of the finest actresses in America, Glenn Close,
“What mental health needs is more sunlight, more candor, more unashamed conversation about illnesses that affects not only individuals, but their families as well.”
Let these stories enlighten you and encourage you to help us build awareness on Alzheimer’s disease. Because these patients do not deserve the oblivion; what they need is help to start change.