Father with early-onset now in late stages

shalomrg

Hello,
I was made aware of these discussion boards through resources at my university and thought I'd give it a shot. I live in Orange Country, CA. I'm a 26 year old Female and my father got diagnosed with early-onset Alzheimer's when I was 13. He was in his early 50's. He has progressed extensively in the last six years. He is now completely bedridden, does not speak, and seems to have the mental capacity of a newborn. We feed him with a baby bottle, change him, everything. Of course, we get some hospice care for showers a few days a week. Anywho, my family and I manage things with a positive spirit, I have my faith to thank for that. I go to therapy and I have a best friend I trust that I can talk about it all with. But I'll be honest, it can feel lonely when I don't know anyone else around my age group that is going through this too. I wish I knew more people who truly understand what I'm going through and will face even after he's gone. Anyways, I don't know if anyone knows of a support group I could join. If you read this far, I appreciate it. Have a blessed day.

M1

Welcome to the forum, and i am so sorry you are facing this at such a young age. This forum is a very supportive place, and i hope you'll find it a big help. Your local Alzheimer's Association chapter would probably have information on in person support groups near you, and you might want to check with any memory care facilities nearby, as they often have support groups as well that are open to anyone in the community. I wish you well. He has lived a long time for early onset, sounds like you guys have taken great care of him.

amob15

Hello, I am truly sorry, I understand what you are going through. My mother was diagnosed with early onset in 2015 when she was 52. I am the oldest of 3, and I was only 22 when the diagnosis occurred. My sisters were 17 and 13. My mother has also progressed quite rapidly, and the first thing to go was her ability to speak to us. She has also become quite infantile, and it has been so difficult watching her slowly fade. I don’t live at home anymore, but my father has been taking care of her and doing a wonderful job. I know how demanding and exhausting this disease is on everyone involved. You are not alone - there are others in your age group going through this too. I wish there was more spotlight on this specific type of Alzheimer’s and dementia, because it feels so unfair and it does feel very lonely.

Emily 123

Welcome shalomrg, There have actually been several children of people with early onset posting over the last few months, looking for others in the same boat, where you're in late teens to late 20's--try using the search function on the upper right? I don't recall specific names, unfortunately.

I'm so sorry.

christinatiberi

sending you lots of love and support. I’m 35, my dad is 66. He started showing symptoms around 4 or 5 years ago and has progressed really rapidly. The caregiver support groups can be helpful but also isolating as most of the participants are our parents age already and are caring for MUCH older loved ones. It feels a bit lonely, for sure. My dad is still verbal but not able to comprehend very much and doesn’t speak too logically. He recently started becoming afraid and suffering from hallucinations. I fear the next phase, which is where your dad is. I’m so sorry. It’s a really scary disease. Stay strong. You’re a great daughter.

Regina312

I am sorry for what you are going through. It is a terrible disease. This forum is wonderful. It helped me so much. I learned so much. My mom passed in 2015, and I still visit this site regularly to share stories, learn new things, share with others, and help those I can. Reach out to the 1-800 number for Alzheimer's and ask them about a support group. They may know of one in your area. Local hospitals sometimes offer support groups as well. Until you find one that is suitable for you, continue to visit this forum and share your story and your concerns. We all can relate to your situation in one way or another.