Caregiver, Helene Shapiro, shares her story for caring for her husband with Alzheimer’s. Caring for someone with Alzheimer’s is marked by both highs and lows, but it’s also an opportunity to showcase love, resilience, and the strength of family bonds. As we navigate this path, we cherish the moments that remain, practice patience, and honor the essence of the person they once were. In the end, what matters most is the love and care we provide. While Alzheimer’s may steal memories, it cannot erase the enduring legacy of love.
What is the best thing about being a caregiver?
Not much of being a caregiver is easy or fun. This disease takes so much away from Steve and I. But the moments when he tries to hug me and tells me I am beautiful are pretty special. One day, I came in and gave him a kiss hello. I soon realized he didn’t know who I was, and I asked him if he kissed anyone, and he said – no – only the cute one.
What are some things you wished you had known before beginning your caregiver journey?
Everything! Early onset has many unique challenges. The medical, psychological, legal, financial and emotional issues can be overwhelming. And there isn’t a lot out there to help.
What are the things you do best as a caregiver?
I am really resourceful. I’m willing to make lots of calls and absorb all the information that people are willing to share. I’m a pretty organized, I figure out a problem and I attack it from all sides to find the best solution. And at this point, I’m not afraid or ashamed to ask for a favor or help. We are all going to be in a difficult position and I have found that people really want to help.
What are the biggest challenges of being a caregiver?
The change in your loved one – is devastating. Steve is the funniest, sweetest kindest man I know. The disease took so much of that away. I only get flickers of him now. On a more basic level, you don’t know what you don’t know or what you will need until it smacks you in the face, and then you have to react quickly.
How do you manage the stress that comes with being a caregiver?
McDonalds French fries on the way home from a bad visit . Even after more than seven years, I’m not sure what is my best way to handle the stress. I’m not ashamed to say that a little anti-depressants and a therapist help me find my center. I have the absolute best friends and family, who are there at any time to talk. And I have Stanley to hug and walk, the best golden retriever you could ever want.
What valuable lessons have you learned as a caregiver that you would share with other caregivers?
#1- go easy on yourself. Things will go wrong, try not to beat yourself up. There is no way you can ever anticipate what is going to happen to you and your family. I am my hardest judge and my friends remind me that I am doing my best and that has to be enough.
#2- Find your people and let them help you. You can’t do this alone; it is just too much. People want to help, they feel as helpless to this disease as you do, so helping makes them feel better.
#3- you can’t figure this disease out and how it will affect your loved one. Stop trying to anticipate what is next, it rarely works, you have to “go with the flow”. I am a serious planner, timelines, lists etc. It just doesn’t work and accepting that was huge for me. 💙 #EndAlzheimers #FamilyCaregiving