Seven Things I Would Advise When a Loved One is Diagnosed With Dementia

This summer I’ve heard that a couple people I care about have been diagnosed with Alzheimer’s. It’s heartbreaking news. And it brings me back in time…

We started seeing warnings when my mom was seventy. She was confused sewing some simple curtains for me, though she was a master at sewing anything and even at upholstering furniture. She got lost driving just a few blocks from the house she had lived in for over forty years and laughed it off. I wanted to laugh too, but I couldn’t. Clouds of doubt and fear started shadowing us.

We lived close to my parents and were able to help Dad with Mom, along with the caregivers we eventually hired, for about thirteen years, until Mom passed at age 83 still in her own home. And while we were still caring for Mom, my mother-in-law, Eunice, moved in with us and lived with us for almost five years. She too had Alzheimer’s. But she was different in the way she handled it. My mom tried to hide and laugh off her symptoms for years. Eunice tried to tell us about her concerns before we really saw them.

She would say things like, “I can’t read anymore. There are too many characters and I can’t follow the plot.” And I would try to reassure by her saying I had books like that too. She would talk about things she forgot and I would just relate. Her symptoms seemed deniable at first. She was in her nineties. It was just her age. Everyone forgets things. But she was trying to tell us she needed help.

Both of our moms were very intelligent and capable when their minds were strong. As they weakened my Mom went into denial. But Eunice, in many ways, called out for help and was very aware that her mind wasn’t working right. She even willingly gave up driving her car.

I’m not an expert, but I learned things going through Alzheimer’s with our moms. We did some things right. We could have done some things better. If someone asked me for advice on going through Alzheimer’s with a loved one, here’s a few things I would say…

1.) Take Care of Legal Paperwork

At the first sign of anything that looks like dementia (or better yet before it is ever an issue because we should all do this anyway) make sure legal and financial affairs are in order. You will want a durable power of attorney signed before you have to go to a judge in order to get one. If the spouse is healthy they can be the attorney-in-fact, but its a good idea to have trustworthy successor attorneys-in-fact listed also in case the spouse also has problems.

Once a loved one can’t make decisions, it’s surprising how often you may need this power of attorney. Also, make sure beneficiaries are up to date on financial investments, insurance, etc. Get a health care agent appointed, even if you don’t want to entirely fill out a health care directive. Get the trust and or will written or checked. Think of anything that might need a signature and do it while the loved one still has enough clarity to participate. My dad was proactive about doing this and I was grateful.

I know it’s hard to think about these things and easy to procrastinate, but you’ll save yourself grief later if you take care of these things now. Just do it. And if your parent moves in with you and wants to pay you for rent and/or care, get an agreement written and signed so you don’t have to worry about the money looking like a gift if your loved one goes into residential living and the government comes looking for more money. There are lawyers who specialize in elder care that would be especially helpful with this.

2.) Preserve All the Memories You Can

Sorry to start with all that depressing legal stuff. But it is urgent. Get it done and then forget about it and focus on your loved one. Save all the memories you can while they are still graspable. Go through the family photos together and talk about them. Jot names on the back of photos. Make a scrapbook. Don’t wait for perfection. Just do it now– even a few pages.

Make audio tapes and/or video tapes of Mom sharing life stories and memories. The long term memories last the longest, but they fade away too. Stop and think about what you want to know and ask the questions now.

I’m so thankful I did some of this early on with my mom. I learned things about her childhood and young adulthood I hadn’t known. I came to know her better and we both enjoyed the process. I wish I’d done more of this.

3.) Make All the Memories You Can

Keep making new memories. Your loved one is still alive. Don’t waste this precious time. If they are still able to get out and about take them to their favorite restaurant. Take drives. Have parties while they still enjoy groups or invite one of their friends for a visit. Keep them as active as they can and want to be, doing what they like best to do.

As things change, look for ways to adapt to their needs. My mother-in-law loved to sew until the sewing machine became too challenging for her. But she was able to sew by hand and continued to make small quilts and found contentment in that.

Use this time, while your loved one knows you, to lavish them with love. Tell them what they mean to you. Tell them everything you appreciate and value about them. Don’t leave a kind thought unsaid.

4.) Continue to Seek Wisdom, Advice and Help

Seek wisdom and be willing to take advice and help. You can call the Alzheimer’s Association 24/7 and they have many resources. I found many connections with other caregivers on Facebook that gave me priceless ideas and support, and online friendships that continue, even though our loved ones have passed on and we’ve never met. You are not alone, even though it might feel that way sometimes. Pray and look for answers and people that will help.

5.) Grieve With God

Trust God with everything. Pour out your heart to Him. Weep with your Abba Father when you need to. Your losses are real. The grieving hurts. Take time to process your emotions with God and others.

And help your loved one to grieve also and to keep their faith. If they can’t read the Bible anymore read it to them or find an audio version. My mother-in-law found so much comfort in CD’s of hymns she knew and was always thankful when we prayed with her. Try to keep up church involvement as long as possible. If your loved one doesn’t know the Lord, pray for ways to share your faith that will be meaningful and helpful.

And keep doing things that help you emotionally — like a walk in nature or time out with a friend. Read the Psalms. Play comforting music. Ask for a hug. Watch some waves. Take time for a sunset.

6.) Give Thanks for the Blessings

Look for the manna moments. Jesus sends grace and encouragement. Pray for eyes to see even the little things. Did a friend call? Did Mom say something that made you smile? Did you get to hold a grandchild today? Did a song on the radio sing your own soul’s feelings? Did a Bible verse seem a direct word from God? Look for those blessings each day. See them as fingerprints of God’s presence and care. Take time to thank Him for His love.

7.) Live One Day at a Time Sharing All the Love You Can

Take one day at a time. You may need to plan some for the future, but don’t live there. Live today. Sit with your dear one and hold their hand. Sing with them. Listen to them. Try to imagine what they may be feeling and ask God how you can best help them.

Remind them that you are there and that you love them. Join them in their jigsaw puzzles or in rewatching those Walton’s or Andy Griffith episodes again. And again. Bake a cake together. Bring them their favorite ice cream. Hug them every chance you get. Don’t save a drop of love for later. Pour it all out now.