My husband recently told me that he doesn’t remember what I was like before my mom was diagnosed with Alzheimer’s. I guess that’s fair. We only started dating one year before I started noticing changes in my mom and only two years before she was officially diagnosed. We actually got engaged the same month my mom was diagnosed.
My husband knows how to love an Alzheimer’s daughter because that’s all he’s ever known. He loves me and so, he loves an Alzheimer’s daughter. But there might be some people out there who aren’t exactly sure how to deal with it. Maybe you knew your wife or girlfriend long before her parent was diagnosed and now all you know is that she’s changed. Maybe her parent was just diagnosed and you’re trying to navigate your new normal. Maybe you just met her and you already know you love her, but you’re just not sure how to love an Alzheimer’s daughter.
I’ll tell you.
First of all, hug her more than seems necessary. She can never get enough hugs. She needs to be physically reminded of your love and support for her. She needs to know that although her parent may no longer be able to hug her, you can. When you don’t know what to do or what to say, just hug her. Hold her. Never be the first to break away.
Don’t try to fix everything. She doesn’t talk about her feelings or vent to you so that you can offer her solutions. You can’t fix it. She knows that. She doesn’t expect you to even try. She just needs someone to listen without judgement, even if you don’t fully understand what she’s going through. You don’t have to. You just have to listen.
Never, and I mean never, say “but this” or “at least that.” No, just no. She knows she still has a lot to be grateful for. She knows better than anyone because she knows loss better than anyone. She doesn’t need you to remind her. She knows what she has and she knows what she’s lost. She doesn’t need to look on the bright side or think positive thoughts. There’s a time and a place for positivity, but right now it just sucks. And that’s all she needs to hear.
Understand that she will often feel sad for apparently no reason. Understand that there is most definitely a reason. She is watching her parent disappear, slowly and painfully, right before her eyes. She grieves each and every loss along the way, no matter how small or insignificant it may seem. She is losing the person who raised her. She is grieving the loss of that person. She is grieving a death that has yet to come. Her parent is becoming someone she doesn’t even recognize and there’s nothing she can do about it. She is sad. She is always sad. She has every reason to be.
Don’t tell her how to grieve. Let her cry when she wants to. Let her talk about her parent when she wants to. Let her show you pictures. Let her tell you when something reminds her of her parent. Let her tell you why it makes her sad. Let her keep all of the things that remind her of her parent. Don’t make her throw them away. Don’t make her go to the places that make her sad. Don’t make her decorate for the holidays before she’s ready. Understand that holidays, birthdays, and other special occasions will be hard for her. Let her eat leftover spaghetti on Christmas and pretend it’s just another day. Let her stop and stare at the Mother’s Day display with tears in her eyes and a longing in her heart. Don’t make her do anything she doesn’t want to do. Let her grieve.
Above all, just be there for her. Hug her. Listen to her. Go easy on her. Send her flowers. Make her a Mother’s Day card from your kids or your dogs. Make her eggs for breakfast. Take her to Panera for lunch. Surprise her with sushi for dinner. Let her buy random things from Amazon and Target. Let her know how much you appreciate her.
Love her.
Just love her.
She needs it more than you know.
She is in a dark and ugly place, but your love will help her see the beauty and the light.
Give her time. She will learn to laugh again.
She’s still the girl you once knew.
I can’t love this enough!! My husband didn’t know me before I became an Alzheimer’s daughter, nor did he know my mom before her Alzheimer’s diagnoses. He was amazing during our caregiving road, I couldn’t have done it without him and my family. ❤️
I love this, Jolie! Thank you for always reading!
My incredible bride and I have been together for 21 years, both now 39.
When we first met she was an Alzheimer’s granddaughter and I got my first glimpse of the pain involved for the family.
8 years ago my wife became both a 1st time mother and also a Alzheimer’s daughter in the same week.
2 years ago her mom had late stage Alzheimer’s but still lived at home. Then additional tough news arrived when her dad was diagnosed with stage 4 breast cancer and he can no longer care for them.
They lived 14 hours away from us so we had no choice but to move them in and immediately become semi-unplanned caregivers for 2 while also raising 2 young children. My wife has 1 sibling but she’s completely uninvolved, nice huh…
1 year ago, and badly worn down, we moved her mother into a nearby nursing home.
Fast forward to today and her mother is final stage Alzheimer’s, and in hospice. Regular hugs and a shoulder to cry on are needed most now.
I say this all as a very experienced husband of an Alzheimer’s daughter who’s been in the trenches for a long time but regularly needs re-reminders of so many of your points. You are spot on!
Thank you and God bless.
Thank you so much for sharing your story! I’m so sorry to hear how Alzheimer’s has affected you and your wife. It sounds like you two have been amazing caregivers and you are an amazing support to your wife. Thank you for reading!
Yes to all of this. Thank you for making me feel seen. Mom officially diagnosed with early onset 3 months before my wedding 4 years ago. It’s been a rough 5 years. My husband knew my mom several years before her diagnosis so hard for him to see her decline so rapidly as well. She’s missed out on being the grandmother I know she was dying to be to my 2 kids and I’ve missed out on all her parenting wisdom. I miss her so much but have so much of an appreciation for her in this new phase in life. It’s such a painful dragged out experience but it helps to have a loving partner for sure. ❤️
Thank you so much for reading! My mom was diagnosed for ten years before she recently passed in April. It was such a long road, but I learned a lot and it made me appreciate so many things more. Much love to you on your journey.
My husband knew me long before I became an Alzheimer’s daughter, and after reading this post over and over, I sent it to him. After discovering your site, I read almost all of the posts in one afternoon, sobbing the entire time. My mom was never officially diagnosed, but I’ve been seeing signs for about 5-1/2 years now, and she’s been in memory care since late Aug. 2020. I think my dad was shouldering much of the burden of keeping Mom on track, but after moving my parents to an independent living facility in my town 5 years ago made it easier for me to help them. My dad had a major stroke in Mar. 2018, so I took over their finances and then facilitated my dad’s rehab afterwards. On the way home from a trip to visit my brother’s family in TX in Oct. 2019, my dad had a seizure in O’Hare airport, and we ended up in a hospital for 48 hours before renting a car and driving 8 hours home at night. Dad ended up being hospitalized and on a respirator a few weeks later, and he died in the hospital, so I was dealing with my dad’s affairs in addition to trying to help my mom who frequently asked me if Dad was still alive, even after the funeral. She hated being alone and began attaching herself to other residents of the facility where she lived, and she wouldn’t leave because she hated being by herself. I was asked by the facility director to move Mom to another facility, so I did that a year ago. A month after she moved to assisted living she broke her foot, and then a few days later the facility was locked down for COVID. Mom spiraled downward quickly and kept packing all of her stuff to move, so I had her try the memory care side for day visits. She seemed to do better since she was around other people, so I moved her again Aug. 31, 2020. She hates it most of the time and calls me in tears which breaks my heart. She always said that she would NEVER move in with one of her kids, and now she either wants to live with me, with my brother or other relatives. I second guess myself that perhaps I moved her to memory care too soon, but she needed supervision and more human contact that she wasn’t getting in assisted living. I feel guilt, grief, anger and a multitude of other emotions daily, and it seems like I cry at least once a day. Much of my guilt comes from the fact that my husband and I are retired, and he wants to travel NOW since he’s 14 years older than I am, but I am likely to have a long care-giving job ahead of me since my mom just turned 83, and her oldest sister has had Alzheimer’s for about 13 years and is now 93. I’m grieving the loss of my mom already because she ISN’T the person that I grew up with, and as you know from your lengthy dealings with this horrible disease, you feel cheated by losing out on your own life as you watch someone you love more than anything losing themselves piece by piece. I’m sorry for this lengthy story, but I just wanted to “talk” to someone who truly KNOWS what I’m dealing with, and I only was able to attend one support group before COVID shut them all down. I am happy for you, Lauren, that you are adjusting to your “new normal” without your mom, and I know that she is happy for you as well!
Thank you so much for sharing your story! I really appreciate your kind words. I can relate to how you feel. I’m so sorry you’re going through this. I hope my words can provide some comfort. Sending love and hugs!
Thanks so much for your reply, Lauren–it meant a lot to me since you have traveled the same road that I’m now on. I hope that you are adjusting to the loss of your mom and that life is good for you!!