I met Susan over a year ago at our support group in New York City. She and I were both pretty new to the support group and we got each other — could appreciate the other’s story, understand the overwhelming sadness. Going to that support group, I think we both felt uncomfortable, yet relieved that we weren’t alone, yet scared and horrified that we were actually in this situation. Susan’s story always makes me sad. Susan is an only child and the weight of her mom’s disease falls squarely on HER shoulders. She is it. She makes the decisions. She carries the all the stress. She makes all of the sacrifices. She bears all of the guilt. She travels up to her mom’s home in Massachusetts often, but despite the heaviness of her story, Susan is determined to have a life and is on her way to finding some calm. She is finally getting her mom’s care in order with a live-in and now she may be able to enjoy those precious, simple moments (like reading a book, going for a walk, those first moments after you wake up) without stress, guilt and anxiety taunting her. Not always easy, remember balance for many of us isn’t always attainable.
Thank you Susan for taking the time to guest blog. I hope her story touches you as it does me. She is one tough mama and I love her! KAT
I am the sole caregiver for my mother who has Alzheimer’s. I am not going to lie. It is the hardest thing I have ever had to deal with in my life. It is heartbreaking, exhausting mentally and physically and there is no one else to help me. Most of my friends, as hard as they try, don’t understand. I didn’t understand either how difficult this journey would be until I was in the middle of it.
I was urged by some friends to join a support group when my mother first got diagnosed and I didn’t. I kept telling myself, “My Mom isn’t as bad as those people, she could stay like this for the next 10 years. I will deal with it then. She is progressing slowly”. The list goes on. When I did finally join it was because I was so depressed and felt so isolated that I was scared for my own mental health and ability to continue to deal with it alone.
Now I can say, I wish that I hadn’t waited to join. It is my lifeline and I don’t think I could survive without it. It is remarkable how good it is to be with people who are going through same thing you are. It makes it so much easier. There are people whose parents are further along than my mom and can tell me what their experience during that particular phase was like, or what came next. There are people who are going through exactly what you are going through and that makes it seem easier somehow. There are people who are at the end of the disease and you can see that somehow they made it and you can too.
I have been able to find the humor (and there is humor) and the joy( and there are moments of that too). The need to laugh is so great. I can’t begin to explain what a release that is. If you find one thing through this, find the moments to laugh. Share the laughter with others. It helps you to heal and gives you a break from the enormous sorrow.
I also think support groups are great for the practical aspects of this disease. You need to know what your options are financially. You need to take control of assets and finances early on so that Medicaid doesn’t take everything your parents worked their entire life for. Don’t stay in denial like I did. Act fast and things will be easier when the disease gets harder.
Get in with an eldercare lawyer as soon as possible. Most states now have a 5 year look back period. It seems like a long time, but it’s not. People in your group can help you with names of lawyers and nursing homes and daycare centers and home health aids. It’s great to have those resources from people that are going through it. They know better than anyone.
At the end of the day, I am still making all the decisions by myself, but having a support group makes me feel not so alone in the world. I wish I had had the courage to join a group when she first got diagnosed. If I had one piece of advice it would be this: don’t wait until things get bad to join a support group. Do it as soon as you can so that you can start to make plans for your future and the future of the person you are caring for. It is the most important thing you will do for yourself along this journey.