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Living with a parent with Alzheimer’s

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Older father and grownup daughterThis year, the prospect of celebrating Father’s Day on June 16th feels like a moment that requires some reflection for me. I recently completed the mourning period following my father’s passing, making this an emotionally challenging time. As our family gathers on the big day, I hope we can embrace the essence of the occasion beyond just the exchanging of gifts and a shared meal. My father played a central role in our family for the past five years, albeit not under positive circumstances. His battle with Alzheimer’s disease and dementia required specialized care as he gradually lost his ability to look after himself.

When my mother was still alive, we managed to support them living in a retirement facility near my home. It allowed us to visit them frequently and be available for urgent situations. However, after my mother’s passing in 2020, we had to make decisions regarding my father’s care due to his worsening condition. The progression of his illness was leading to memory loss, resulting in an inability to manage daily tasks or adhere to his medication regimen.

The family decided to care for him ourselves for as long as we could rather than move him to an unfamiliar place where even the most organized care wouldn’t match the love and attention he was accustomed to. We collaborated with a home care specialist to create a plan that would allow Dad to live his remaining days comfortably and securely without causing too much strain on our family dynamics.

In the beginning, when I first learned about his diagnosis, I was flooded with emotions. From the shock of the news to the realization that, even if he could be given top-notch care and therapy, his condition would likely deteriorate. Along with grieving my mother’s loss, I knew it was my turn to take over caring for him as she had done for so long.

Bringing my father into our home felt like the proper choice at that moment. With two boys of my own, I wanted them to spend quality time with their grandfather. Initially, things went smoothly as we established a routine that provided him with needed stability, which is especially crucial for someone dealing with Alzheimer’s.

Handling Alzheimer’s at home

Having a daily routine with specific times for meals and activities really helped to ease his initial confusion and anxiety. We also made some changes at home, like decluttering and using labels and notes for memory support. These simple adjustments had an impact on helping my dad navigate his new surroundings. Engaging him in activities he loved, such as gardening and listening to music, kept him involved and gave him a sense of purpose. Our family members prioritized spending quality time with him each day, encouraging him to engage with them mentally and physically so that he could go to bed each night with a sense of having achieved something positive.

Over time, the emotional and mental strain of caregiving started to become more noticeable. Juggling my dad’s needs alongside those of my children and balancing work responsibilities became quite overwhelming. While caring for a parent can be emotionally fulfilling, I quickly realized the importance of balancing the emotional reward I got through caregiving and fulfilling my obligations to the rest of my family.

Connecting with others facing challenges proved invaluable in navigating this journey. It made me understand that I wasn’t facing this alone, providing me with tips I could use in my own circumstances. Moreover, I decided to seek counseling to cope with the stress and emotions that accompanied this experience.

Taking care of my father’s needs was also a crucial part of our journey. We put together a healthcare team consisting of doctors, occupational and physical therapists, and pharmacists to develop and uphold a plan that guaranteed he received top-notch care consistently. 

Some things I learned about dealing with Alzheimer’s

I was encouraged by the medical specialists to learn as much as I could about the available forms of treatment, both to make myself aware of what signs to look out for that would indicate that the drugs were beneficial and to be able to spot any negative effects that may have necessitated an adjustment to the dosage or even a switch to an alternative path. It also helped me to come to terms with the reality that there is no promise of victory in the battle with Alzheimer’s and not even one on the horizon. 

In the earlier stages of Alzheimer’s, doctors start with less aggressive medications that are called cholinesterase inhibitors that deal mostly with the symptoms of the condition. Cholinesterase inhibitors (such as Razadyne, Exelon, Reminyl, and Aricept) have very similar effects. They all work on the principle of boosting the levels of the neurotransmitter called acetylcholine, which is crucial for the formation of memories. Overall, which option is best for the patient depends on their own experience with each, both in terms of feeling better and any side effects they might experience. None of them are completely effective, and the best expectation is that they can slow down the progression of the condition. A drug that works on a different principle is in the battle with Alzheimer’s is called Namenda, which works to preserve memory by restricting the levels of glutamate, which is the primary excitatory neurotransmitter in the brain. When glutamate levels are high, it restricts the activity of receptors that play a role in dementia.

Non-drug therapies also played a crucial role. We engaged with an occupational therapist who set up a program of memory training using external memory aids, along with aromatherapy, and music and dance therapy. One idea that was especially helpful was to engage in animal-assisted therapy. We built a shelter in the garden that birds could use for nesting, and it became a particular joy for my dad to go out and feed the birds every day when the weather permitted. I even noticed that he would take some snacks for himself while he sat outside, enjoying fresh air, sunshine, and the songs of the birds.

All of these therapies were particularly beneficial for us as well because they relieved the pressure of having to be attentive to his needs for prolonged periods during the day. They also helped to slow his cognitive decline and improve his quality of life.

Facing up to reality

Towards the end, and despite our best efforts, there came a point when caring for my father in his battle with Alzheimer’s at home became impossible for me. His condition progressed, and his needs exceeded what I could provide. It was one of the hardest decisions I’ve ever had to make, but I knew it was the right one for everyone involved.

Choosing a care facility was daunting. We looked for places that had qualified staff, a clean environment, and activities that could keep him engaged. The transition was difficult, but it was also a relief to know he was in a safe, supportive environment where he could receive the specialized care he needed.

In the care facility, my father’s condition continued to decline, and he entered a more advanced stage of dementia. In those final months, he no longer recognized me. It was heartbreaking, but I found comfort in knowing we had done everything possible to make his journey as peaceful as possible. My father passed away a few months ago, and while the pain of losing him is still fresh, I also feel a sense of peace.

What I hope you can learn from my experience of the battle with Alzheimer’s

To those of you beginning this journey of bringing a loved person with Alzheimer’s into your home, my heart goes out to you. Alzheimer’s is a relentless disease, but you are not alone. Here are a few key points that helped me along the way:

  • Establish a routine that provides the patient with a sense of stability and predictability. It can significantly reduce any feelings of anxiety.
  • Simplify the environment in which the patient will live: Reduce clutter and use memory aids to help them navigate daily life.
  • Take care of yourself. Your health and well-being are crucial. Support groups and professional counselors can offer advice and support. Don’t hesitate to ask for help.
  • Stay informed about medications and non-drug therapies that can help manage the symptoms, but don’t have unrealistic expectations. Although there may not be any revolutionary developments, doctors are learning new things about Alzheimer’s all the time, and some of what has been discovered may be relevant for your case.
  • Don’t hesitate to discuss your patient’s progress (or lack of progress) with the healthcare providers who are engaged in monitoring your loved one’s case. In most cases, finding the best therapy is a matter of trial and error, and there is no reason to stick with a medication that is clearly not working.
  • Get all the necessary legal and financial affairs in order early. It will save you a lot of stress eventually.
  • Accept that even with the best intentions, the time may come when transitioning to professional care is in everyone’s interest. It’s a tough decision, but sometimes it’s the best one for everyone involved.

Remember to cherish the moments of connection and joy, no matter how small. These moments are precious and can provide strength and comfort amidst the challenges. Thank you for allowing me to share my story, and I hope it provides some guidance and support for your own journey.

Questions I have been asked

Will there ever be a cure for Alzheimer’s disease?

There is presently no cure for Alzheimer’s Disease, and current research has not yet come up with any immediate prospects. It may be ten or more years before there may be the first glimmer of hope of a cure for the million who battle with Alzheimer’s. Current treatments can only slow down the progression of memory and cognition loss and the other main symptoms that develop with time.

How is Alzheimer’s diagnosed?

Doctors have developed what is known as the 5 A’s test as a way to detect early Alzheimer’s disease. The 5 A’s stands for agnosia – an inability to recognize familiar tastes, objects, and sounds; anomia – an inability to put a name to familiar things; aphasia – an ability to express words, often in the middle of a sentence; apraxia – an inability to perform familiar tasks, like dressing; and amnesia – a general loss of memory.

What is the biggest predictor of Alzheimer’s?

Age is the largest risk factor for Alzheimer’s. Most people who develop Alzheimer’s do so after the age of 65. Fewer than 10% of cases occur before that age. As a person ages past 65, their risk of Alzheimer’s increases. In the age group 65 to 84, about 8% of the population has Alzheimer’s. Over the age of 85, the proportion of people having to battle with Alzheimer’s rises to 33%.

What is generally the first symptom of Alzheimer’s disease?

Memory difficulties are usually the first outward sign of Alzheimer’s disease. There may be difficulties retaining new information and recalling recent events. Often, memory of earlier events is not affected until much later in the progression of the disease.

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