“Challenges are gifts that force us to search for a new center of gravity. Don’t fight them. Just find a new way to stand.” ~Oprah Winfrey
Alzheimer’s crept into our lives about five years ago. It’s like a vine growing alongside a house, slowly taking over the space that was once free. But in this case, the vine is slowly creeping over my mum’s brain.
There are so many horrific statistics attached to this disease: Worldwide, nearly forty-four million people currently have Alzheimer’s or a related dementia; one in nine Americans over sixty-five has Alzheimer’s disease; unless a cure is found, more than sixteen million Americans will have the disease by 2050.
The numbers are so scary I can hardly wrap my head around them. But to be perfectly honest with you, right here, right now, I don’t care about all these statistics. The one thing I do care about is the fact that this is happening to my mum.
The disease has brought her physical pain, fear, and confusion. In fact, it has brought all of us that.
Watching my mum disappear into this disease is heart wrenching. Watching my dad having to cope with losing the love of his life, the woman he has been married to for fifty years, makes me sad beyond belief.
It is a cruel disease. We are all devastated. It hasn’t been easy for me to process what is happening. In fact, there are days where I know I haven’t processed it at all. I carry around a sadness that is hard to describe; all I can say is that it is a sadness that comes from deep within my soul.
In contrast, on the good days, I actually consider myself as “lucky.” Despite her dipping in and out of lucidity, she is still there for me, at least for now. And so I am learning to hold on to the precious moments when we do connect, and that has taught me a whole lot about life.
So far, the progression of the disease has been slow. Slow enough that I have had the chance over the last five years to tell her how I feel. I have had the chance to say goodbye slowly and to make sure she knows I love her every step of the way. Some people don’t get that chance and have to deal with death from one moment to the next. So yes, I am lucky in a way.
But for me, it’s bigger than that. This time with her has given me the courage to say the things I need to say to those around me, without bottling them up or hiding from them. Because there is only now for her. Later isn’t an option.
It has helped me voice the sometimes-difficult things that need to be said at work and in my private life.
It has taught me to express my love for my loved ones. Because cliché as this sounds, life really is too short. And that is a gift I have received from this terrible disease.
It has also showed me how to live in the moment. My mum’s moments are short, and most often forgotten. When she asks me the same question over and over again, I try not to get frustrated. I repeat myself over and over again like I was saying it for the first time. I am simply living in her moment. And that is a gift I have received from this terrible disease.
I have also come to realize how much my energy has an effect on her. When words fail, which is happening more and more, it’s the energy between us that connects us. A hug, a touch, or a squeeze of a hand can say so much more than words. That magical hug is enough—for her, for me.
With that realization comes a new perspective on how my energy has an effect on others. When I am present, and I mean truly present, I feel my relationships and experiences blossom—from the simple act of buying bread at my local bakery (actually taking the time to breath in the smell of fresh bread rather than just doing something else on the shopping list), to the deep, meaningful moments with my friends. And that is a gift I have received from this terrible disease.
We all grieve in different ways. Each family member and each friend is seeking solace and comfort in whichever way helps. I have stumbled through this as best as I can, trying to find my own way. But, how do you accept slowly losing a person you love to a disease?
I don’t have any miracle answers—I wish I did.
There is advice and support out there, plenty of it. I have found that some of the advice is helpful, while some of it is simply stupid; I would laugh if it weren’t so raw. There is, however, one piece of advice—more of a thought, actually—that I recently received from a good friend.
It has helped me to look at the situation differently, and on some days, has given me a sense of peace.
I think that is why I am writing this article—to pass on this advice, on the off chance that someone who is losing a loved one to Alzheimer’s, or any other devastating disease for that matter, may be comforted by it, just as I have been.
This advice has given me the opportunity to look at this situation through different lenses, depending on how I am feeling on any particular day.
The beauty of this thought is that it has offered me the space to try to accept the situation bit by bit. It has also helped me to look at life differently; I guess they call that “re-framing.” And on other days, it has helped me to think that my mum actually has her own plan.
The thought is this: that my mum has found another house to move into. It’s not that she is unhappy where she is, but she has just found another home to live in somewhere else. She is slowly moving all of her stuff there—one plate, one knife, and one book at a time.
At the moment, she is living in both houses. At some point soon she will have moved out completely.
I don’t know will happen to her when she does move out. I just hope with all my heart that she is as happy where she goes as she has been with us. And because she can’t take her memories with her, it’s up to me to tell her now, again and again: I love you. I love you. I love you.
And you know what? I have complete faith that she will take our love with her to her new house.
I am not religious, but I have found faith.
Faith—that is a gift I have received from this terrible disease.
Hugging image via Shutterstock
About Niki Parker
Niki Parker is a fan of our beautiful planet and is an occasional freelance writer based in Switzerland. If she could, she would wear flip flops all year round, live on a beach and eat seafood.
Though I run this site, it is not mine. It's ours. It's not about me. It's about us. Your stories and your wisdom are just as meaningful as mine. 
Thank you, Niki, for sharing your wisdom. And congratulations for meeting the challenges with such grace, faith and courage. There is so much to learn from in your writing.
I love the image of a person moving from one home to another. That is a such a comforting, meaningful and helpful way of looking at it. How wonderful that you are open to living in her reality.
Dementia touches more and more families. That is partly because medical science now cures many diseases that previously were fatal. So the average life span keeps increasing, exposing more of us to dementia.
Some individuals have a gene that predisposes them to dementia. But even others can invite dementia, by the way they mistreat their brain.
There are many ways in which we can be unkind to our brain:
Dividing our attention constantly, instead of paying attention to one thing at a time;
Trying to have it all, instead of choosing the few goals that are most important to us;
Reacting with anger and escalating conflict in our dealings with others;
Eating and drinking comfort stuff instead of facing and accepting distress;
Overthinking situations instead of taking good-enough steps;
Believing all the harshly critical things our mind says about us;
Sitting for hours at a time and being physically inactive;
Neglecting the part of us that loves to learn, create and play.
Fortunately, the ways of living that bring us peace of mind and motivation are good for our brain, too. We can’t change our genes or some of our circumstances, but we can learn how to be good to our brain.
Previously a 30-year-old might have expected to live for another 50 years or so. Now many 30-year-olds can expect to live to a 100 or more. If we are good to our brain, our brain will be good to us every step of the way.
Thanks again, and wishing you peace of mind and joy from the love which you pour out on your mother. I hope to be blessed with such love if I ever develop an unrelenting illness.
Joel
I’m so sorry about your mom Niki and I admire your strength and courage. Thanks for reminding me the importance of connecting to those I love, even when it seems they may be slipping away.
This article hit home. My father has alzheimers for 9 yrs and has been married to my mom for 50 plus years. You comforted me and gave me insight. Thanks for sharing this article. God bless.
Stop preaching, we suffer enough.
This article hit home for me, even in hindsight. We lost our mother to AFTD last February. Once I worked past the pain of losing her bit by bit, I was also able to find some silver lining in the reality of what the new present moment was. She was more physically affectionate and more able to allow herself to lose herself in simple joys due to her condition, at least for a while. I’m sorry you are going through it with your dear Mum; the hardest is to come, but that can also be seen as a blessing after a while. Much love.
I’ve become regular reader of this site and I’d like to thank the author for sharing such a personal story. I’d like to comment on this as someone who lost their spouse to cancer just recently. She had cancer for more than 17 years. We attended high school and college together and were married 8 years ago this past December 1. I lost her a month later at the age of 32. Many of the things you say are true. Knowing that your loved one will eventually pass makes you take the time to be just a little sweeter, tell them the things you want them to know without hesitation. I am grateful that my wife was herself, even at the end. You’d fight an army to make sure they are comfortable and happy. However, knowing the end is near doesn’t make the inevitable end easier.
Four months out, I can say that I was not truly ready for the end when it came. We knew for years that she would eventually die from the disease. As it spread through her body, we clung to one another and I hope when her time came, the way was made simpler by my care. The pain of absence is just as palpable today as the day she died. You always hope for another day, another hour with them. Even now, I wish I could tell her about my day or fight with her about getting the laundry done.
I am more sensitive in my interactions with others. I consider their feelings a little more. I’m more nurturing to those who suffer loss and are suffering. Her uncle recently died and I’ve offered what help and requested advice I can to his widow. I give blood regularly to help ease others suffering. I donate money to children’s organizations which fund medical research, started a college fund in my wife’s honor to support female law enforcement officers in their career (She was a probation officer). I’ve learned to give to the universe all the good I can because, hopefully, I can find healing by showing humility in the face of the overwhelming grief. I don’t toot my own horn to brag, but to show others that positive things do come from loss and healing. I’m not sure this is a lesson you can learn without having lost something precious.
I’d give all I have gained to tell her “I love you” one more time. If you are reading this, tell your loved ones that now. Don’t ever wait. Get on the phone now and tell them. I take comfort in the fact that her last words to me were “I need you, Nate!” She relied on me and I relied on her for everything that was important. Be the person for whom someone relies in their darkest moments. Be their rock.
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What a great imagery…slowly moving out.
My dad has dementia (most likely AZ) too and the last +6 years have been unreal. It is such a horrible disease and although I have come to terms with the new normal, I still wish I can have my old dad back. To take on a parental role as the child is surreal. Although most days he has no idea who I am, in those off moments when my dad smiles and waves hello, it just melts my heart. I know he’s telling me “I’m still here”. I find peace in knowing that I have done all I can do to be there for my dad. I can picture him moving to his new place. Thank you for sharing the advice!
Mothers hold their child’s hands for a moment and their heart for a lifetime.
Very interesting. Thank you.
You are very welcome Emily. Although these subjects are almost taboo – I find sharing my feelings helps. I can only sympathise with what you are going through. Those melting heart moments that you mention are what life is about. Take care
thank you for your insightful and honest comments. One day at a time is now my mantra.
thank you for you sharing
thank you Joel for sharing.
thank YOU Raymond for sharing. Am glad that we are able to seek comfort in shared words & experiences.
thank you Valentina