When Mom Has Alzheimer's

If you’re not personally affected by Alzheimer’s in your family, then you’re likely not thinking about how more than 5 million people suffer from ALZ in the U.S. – or that it is the 6th leading cause of death in America. November is nationally recognized as Alzheimer’s Awareness Month. For me, Alzheimer’s awareness is every day of every month; all year long…..which is why I decided to include this personal story on this forum – in hopes to bring more awareness to the families who care for those affected with this disease.

           It wasn’t until my own mother was diagnosed with this debilitating disease that I really paid attention to how much of an impact dementia has on the patient’s life and the toll it takes on the lives of the patient’s family. When my parents moved in to our home about 12 years ago, mom seemed fine but within a few years we began to notice that something wasn’t quite right. She was misplacing items, forgetting things, and feeling easily overwhelmed with daily living tasks. She was defensive and denied there was an issue. It was two years before she finally agreed to be tested. The actual diagnosis did not come as a surprise to any of us – as we’d been experiencing the effects of Alz for some time.

           When I first read about Alzheimer’s and the stages of the disease, I didn’t see much written about the patient and the initial impact the diagnosis might have on them. For my Mom, she was heartbroken and hated the idea that she would eventually need to rely on someone to care for her needs. (My Mom was the one who always did for others-so accepting she needed help was overwhelming for her). 

           What would her future hold? Would she quickly forget all of us? How soon would things get bad for her? Would we need to place her in a nursing home? She felt scared and sad and overwhelmed and anxious. And quietly, all of us were feeling much the same way.

           It’s been five years since the official diagnosis – but easily 7 or 8 years that she has had this horrendous disease. A lot has changed over these last five years. Things Mom can no longer do: driving, cooking, grocery shop, cleaning, financial needs, talking on the phone, holding an adult conversation, bathing and toileting, and daily living tasks. We care for her 24/7 as a family. My 85 year old Dad is the primary caregiver and spends all of his hours with her – rarely leaving her side. My two teen daughters (ages 16 & 17) and I take over care in the afternoon/evenings. Other family members pitch in where they are able and for now the routine is working for us and we are able to keep my Mom at home. After 65 years of marriage, my Dad has said that as long as he is alive he will be taking care of her. Believe me when I say it can be very challenging; but for now, it is working for us.

           Mom is a shell of the woman she used to be but sometimes her old self connects through the tangles of her mind……and it is in those moments that Mom speaks and smiles like she used to do. We cherish all of those moments!

Living with someone with Alzheimer’s can be very challenging for the caregivers. As someone who has been living it for several years I would highly recommend having an outside friend whom you can lean on for those extra tough days and to accept help when you can get it! Take time away when you can – even if for just a few hours.

Here are a few other quick take aways – they have helped me a lot and maybe they might help you too:

1.    Love Love Love

2.    Caring/Dignity – If you’ve ever had to bathe a parent you’ll quickly realize the importance of keeping their dignity intact. Showering my Mom has been a very humbling experience for me.

3.    Repeat – repeat – repeat (and keep repeating)

4.    Say it like you are saying it for the first time! (Even though you’ve probably said the same sentence 99x in the past hour).

5.    Patience is a virtue (Did I bring my glasses? Does someone have my glasses? Where are my glasses? I think I forgot my glasses? Do you have my glasses? Did I bring my glasses?) I answer every time like it’s the first time I’ve heard the question…..because in Mom’s mind – it IS the first time she’s asked the question.

6.    Compassion – We can’t even begin to imagine what it must be like for them to feel so disconnected, lost, and confused all of the time.

7.    Spend Time with your loved one! Your presence means more than you realize – even if there is no direct conversation. Be There. Be Present.

8.    Talk – Laugh – Smile!

9.    Dumb it Down (Yes, I really said that!) Work with What You’ve Got – Cognitive skills are not what they once were – so a simple game like go fish or connect four might work with your loved one. 

10. Listen/Adapt – Adapt to their changing abilities and adjust routines to fit their needs. Listen to him/her as to what they need/want.

11. Distractions! – We use distraction techniques (music, tv, ipad, game, phone call) when we need to redirect Mom’s thoughts (anxiety, depression, etc.).

12. Outings – when possible, this helps the patient get a change of scenery while feeling ‘safe’ with their caregiver. My Mom is wheelchair bound so outings can be more of a challenge but we make it happen!

13. Pictures – Take LOTS of pictures and/or videos! (You won’t regret too many photos!)

14. Acceptance – While you can’t change what is happening to your loved one; being a supportive family member will mean more than you realize.

15. Above all – treat each day as if it were your last one together – because one day it really will be.

Hopefully this small glimpse into the personal side of living with an Alzheimer’s patient has been helpful to you in some way. If you would like to learn more about Alzheimer’s disease, stats and current research, please click on this link: www.alz.org

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