The Power of Alzheimer’s: Turning Life Upside Down

Mom in PurpleWhen a family receives an Alzheimer’s diagnosis, life is never the same. Our worlds change dramatically, in ways not a single one of us can imagine until we’ve walked that path. When Alzheimer’s enters, we become different people, gaining an unexpectedly crystal clear perspective of just how fragile life is.

Mom’s Story

My mom retired in 1998 following a 30-year career with a Fortune 100 company. She worked hard, traveled extensively, and earned the respect of countless people over the years. She was an intelligent, witty, fiercely independent woman loved by all who came into her path.  A loyal, caring, compassionate friend, she was often the life of the party.

And then, not even six years after retiring, we began to notice changes in her. They were subtle at first, and may have gone unnoticed in someone who hadn’t been as sharp and independent for so many years. Initially, I told myself these were normal signs of aging, but at barely 68, that didn’t seem quite right.  She was repeating herself constantly, finding it harder and harder to find the words she was looking for, and seemed to be on the defensive more often than not. Always extremely outgoing, when she began to withdraw, it was immediately apparent.

Living in Denial

As my own frustration grew, I blamed it on the fact that she didn’t keep herself busy enough when she left the workforce. It made me angry, and no matter what I did to encourage her, it felt as though she wasn’t trying hard enough. Years later, I still think back on it as a chicken and egg situation of sorts. Was her rapid decline due in large part to the fact that she had slowed down so much? Or had she slowed down because she felt the changes occurring long before we realized it?

She lived independently until 2008, which in hindsight, was too long. But, as happens with so many families, we were in denial. We didn’t know how to address it so we did everything possible to keep the peace while preventing the wheels from falling off the bus. Any talk of assisted living was met with intense resistance, and as an only child, there was no such thing as strength in numbers.

Reaching a Crescendo

Those years were rough. Every day seemed to hold another crisis; I began to cringe every time my phone rang. It felt like we were at the doctor or hospital continually, until finally the physical and occupational therapists told us she could no longer live independently.

Ultimately, she lived with Alzheimer’s for about nine years, but the decline was swift. She lost her speech very early on and struggled with emotional upset and depression; meds would be adjusted and things would level out for a bit, and then it would start again. Paranoia, hallucinations, aggression, agitation, you name it.  We were blessed, though, that she never completely forgot us – right up until the very end, she recognized my daughter and I as two people that she loved very much even if she didn’t understand our relationship. And in a sense, our bond strengthened inexplicably over those years.

Life After Alzheimer’s

This past weekend marked six months since Mom’s passing, and it’s a constant evolution. Life after Alzheimer’s is gradually being revealed to me, and while I know I’ll figure it out, I’m still grappling with my identity and purpose. It was all so wrapped up in caregiving for a very long time – now I wrestle with missing her more than words can say. I battle the constant fear of getting the disease myself, and with a firm grasp on my own mortality I really struggle with the mundane parts of life.  I feel as though I’m perched on the brink of another major life change, just waiting to discover what the next chapter holds…

We would love to hear from you. Share your stories and experiences by leaving a comment.

Please leave your thoughts and comments

  • http://elainemansfield.com/ Elaine Mansfield

    Thanks Ann. Hard to believe it’s been 6 months since your mom died–and 6 years since mine died her quiet death after years of crisis, followed by years of sleeping in a fetal position. Wow these things are hard, but knowing that we are not alone makes it all more bearable. You’re doing a great service by writing about these issues honestly and with a compassionate heart.
    Warmly, Elaine

    • http://www.alzheimers.net/members/ann/ Ann Napoletan

      Thank you, Elaine. That means a lot coming from you, someone who has inspired me more than you can begin to imagine. (((Hugs))) ~Ann

  • Dana Larsen

    Beautiful post, Ann. I, too, can’t believe it has already been 6 months since your mom passed. You are such a powerful writer and have such good messages for the caregiver community as I know so many people relate to what you’re going through. Your compassion is tangible. And I’m with you — I worry about both my mom and me getting the disease. Such a scary thought! Let’s hope a lot of progress is made to finding a cure.

    • http://www.alzheimers.net/members/ann/ Ann Napoletan

      Thanks for the kind words, Dana.

      Absolutely praying for more funding and significant advances in research sooner than later. ~Ann

  • DJ Morris

    Ann ~ I totally empathize with all the emotions and changes you are going through. My husband and I moved in with his parents about 18 months ago because his dad (87) was diagnosed with Alzheimers and his mom (82) is in early stages of dementia. Because his mom was in such denial that anything was wrong with her or her husband, it was very tough trying to take care of things without being perceived as ‘meddlers’. My father in law passed away 1 1/2 months ago and it has now settled in with her that he is gone but she doesn’t get the concept of what actually happened. We feel the stress of her having to deal with him 24/7 accelerated her mental deterioration. She is very forgetful but still in denial that anything out of the ordinary is happening. As she puts it “all old people forget things”….Alzheimers and dementia are two of the most devastating conditions because you lose the person long before they leave you. We will guarantee she will feel loved!

    • http://www.alzheimers.net/members/ann/ Ann Napoletan

      DJ, I’m so sorry that you lost your father-in-law to his awful disease, and that your mother-in-law is also declining. Stress can play a big part in the process and can definitely speed the decline. Denial is such a difficult thing to deal with, too. One thing is for sure, at the end of the day you will be able to look back and know that you did everything you possibly could for your in-laws. Sending you many blessings, and be sure that you and your husband are taking care of yourselves and each other as well. Hugs, Ann

  • Anne Engman

    Ann-
    Thank you for your story. What caught my eye is that you are an only child, as am I. My Dad was diagnosed with Alzheimer’s approximately 8 years ago and my Mom has not been diagnosed but is definitely dealing with memory issues. I have them on the list for the 2 assisted living residences in town. I also just took the car keys away from Dad. He has been so independent, driving to the grocery store, Shopko and the library. However, he has taken quite a few falls lately and I see him deteriorating, so I didn’t think driving was a good idea anymore. He misses his freedom and that’s another task I’ve taken on. Mom and Dad are living independently but I wash clothes, make suppers, do the driving, take them out for dinner twice a week and visit. I need to add cleaning the house to that list, I tried getting a housecleaner, but that didn’t work. This is a difficult and frustrating situation – at times I feel so alone. I wish for siblings – in my fantasy life we’d all get along! Thank goodness for good friends that listen!

    • http://www.alzheimers.net/members/ann/ Ann Napoletan

      Oh Anne, you have your hands full. I know what you mean – there were many times along the way that I was almost bitter about the fact that I didn’t have siblings to help make decisions and so forth. As the years passed, and the more people I talked to, the more I realized that one sibling almost always ends up carrying the load regardless of family size. Even worse, there are the all too common situations where one sib carries the load and the others do nothing but criticize every move, yet don’t do a thing to lend a hand.

      In our case, as the disease progressed and things became more difficult, I found myself thankful at times…thankful that I didn’t have the additional weight of family squabbles and friction on top of everything else. I do envy the families that truly pull together and have one another to lean on in times of crisis, though.

      You’re definitely right about good friends. They are such a blessing and have gotten me through some very difficult times.

      I’m glad you could relate to this post, and I hope you’ll come by and visit often. Take care of yourself, hang in there, and try to enjoy every “moment of joy” that you can with your parents.

      ((((Hugs))))
      Ann

  • Becky

    My father struggled with Alzheimers and passed 10 yrs ago. Now my mom is struggling and I am at a point possibly placing her in a senior/memory care living facility. I have 1 supportive sister in TX, and 2 sisters in denial. My mom started her Alzheimers pretty much the same way as your mother. I applaud you especially with being an only child and hard it must have been. As I search my soul to be at peace with the decision I need to face I will think of your story. Thanks for sharing.

    • http://www.alzheimers.net/members/ann/ Ann Napoletan

      (((Becky))) …I’m so sorry to hear you lost your dad to ALZ. Ah, I wish I had some words of wisdom, but I don’t even know what to say. It’s just a horrible, horrible disease – one that no family should have to live through. If my story can help you in some small way, it makes it worth telling. Best of luck with your decision; know that whatever you decide, it’s the right decision. No matter what the situation, we all do our very best in the moment with each challenge we face. The decision will be made with love and that’s the most important thing. Your mom is very fortunate to have you. Sending you blessings… Ann

  • Pat Onken

    Thanks for sharing, my mother was diagnosed with Alzheimer’s in 2009 and my dad and my sisters have been helping with mom. We have just made a choice to have mom placed in assisted living as it has become to much for my dad and us girls to handle. I pray that mom has peace soon as she is so very confused. We all worry that we to will be in her shoe, hope research can find a cure.

    • http://www.alzheimers.net/members/ann/ Ann Napoletan

      Pat, I understand completely. I don’t know if an hour goes by that I don’t worry about ending up with it myself. In fact, I’m getting ready to put up a post about clinical trials and my recent change of heart on genetic and bio marker testing. You may find it interesting. Take care of yourself and I wish you all the best with your mom’s transition to assisted living. (((Hugs))).. Ann

  • Ella

    Thank you for this posting. I remember my husband and I, along with my brother, hearing the dreaded diagnosis we were assuming in 2011, it was a terribly sad day for him and us, the door opening our fears. We went out for a family dinner to relax and discuss future plans, assuring him we were here for him. All seemed to go well that evening, so we thought, but, looking back, my husband and I were clueless. By morning my brother’s denial was back in full force. He holds on to that still, I believe it is his way of coping. The A word or phrase of “slight memory loss” is not to be spoken, we pretend all is ok, work around it so to speak. It’s a challenge. I see that my husband and I are a pretty good team, deserve a pat on the back these days. A life change for everyone this A word, the old life my brother so wants again, 1000 miles away, is not an attainable goal. This A thing is progressive and doing what the doctor said it would. You can’t help but question when you alter this ride, hopefully you just know, don’t dwell on decisions or backtrack. Our “seat belts are fastened,” we’ll ride as long as we are able. Love and support in abundance these days is what we are able to offer. God Bless All Caregivers!

    • http://www.alzheimers.net/members/ann/ Ann Napoletan

      Thanks for writing, Ella. I’d venture a guess that denial is part of almost every family’s journey at one time or another – some perhaps longer and/or more than others. I pray that if I do get the disease someday, I am able to address it head on, but who knows. One can’t know until the time comes, I guess.

      I’m glad you and your husband make a good team. Dealing with the big “A” has to put a strain on any marriage. Life changing, as you said. One thing that always amazes me is your positive outlook. Attitude is everything!! Take care of yourself. ~Ann

  • coleen

    OMG! Thank you for sharing your story, its identical to my current situation. My mom also was very outgoing an independent. She retired from the phone company with 30 years under her belt, then we noticed shortly after her memory issues. I was in denial as well being an only child became very angry because this was happening to us. The timing is almost exact also. My mom is in the severe stages and I am having trouble making decisions with care but going crazy with trying to do this on my own with very little help. God Bless u for sharing.

    • Ann Napoletan

      Coleen…. I’m so sorry you’re going through this. It definitely sounds like we have a lot in common. I wish I could say it gets easier, but we both know that wouldn’t be true. Make sure you are taking care of yourself. I honestly didn’t realize what a toll it was taking on me until my mom died… I’m still trying to get my head around it. It really is helpful to talk to others going through the same thing, whether via an in-person support group or an on-line group. You are in my prayers. ~Ann

  • Jasmine

    Alzheimers, the dreaded words make me shiver! Fear, dread, panic, loss of control, being put away, always present, this is a picture of my emotions. I spend 4 hours a day researching looking for some help or information that helps one live independent longer. I hide from people. So when did I suspect that I was in the early stages, when I could not remember who my son in law was! That was about 5 years ago. So here I am more years down the road. I talked with the family doctor and a professional mental doctor, all to no avail! So I do not have the benefit of medical, social, family!

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