Feeling Very Alone

rosecoloredglasses

Hi everybody! I hope everyone is having a good day/night. I am 24 and the main care taker for my mom who is 59, she was diagnosed with Alzheimer's back in 2022. The first year since her diagnoses had been pretty uneventful, no huge changes besides getting her disability approved. She had already stopped driving and working prior to her diagnoses. I don't think my brain comprehended what was actually happening to my mom until very recently, about a week ago. I feel like my heart is breaking, I have terrible brain fog from dissociating, and I'm always angry. It feels like I'm already grieving even though my mom is still here, physically and mentally. Thankfully she's in early stage so she's still "herself," kind of. I recently have been doing a lot of reading on the disease and I think that's what caused my brain to "click" about this. The idea that my sweet mama has maybe a decade at most left? It's not enough time. I'm angry at her for not being able to be my mom, angry at my family for not doing more to help her and me, angry at myself for not being able to fix all of this, angry at people who try to relate to my experience when they're not going through what I am. I understand this disease is no one's fault, and those who are trying to be there for me in my life are just trying to help, but I'm just so furious and sad and I don't want to do anything. I just want to lay in bed until this all goes away, but I don't have that option because my mom needs me. This is more of a vent than anything else, but I appreciate those who took the time to read this. Much love to you all and your families.

Jeanne C.

I think many of us have been (and sometimes still are) where you are. Every dementia journey is different, but one thing I think caregivers share is grief. We get sad. We get angry. I know there are days where I just want to pull the covers back up and stay in bed. You're definitely doing the right thing by learning what you can. Please find ways to take care of yourself. See to your own health, including mental health (a therapist and a support group can do wonders for your wellbeing). Feel free to vent here. We get it. Sending you all the best.

JDancer

I'm so sorry you're going through this. This forum may be the only place to find people who do understand.

I certainly understand the grief. A book called Ambiguous Loss by Pauline Boss explains it well. Our LOs are gone, so we grieve, even if they're still alive. And if you're familiar with the stages of grief, you realize anger is a natural response.

Your mother is fortunate to have you by her side. Please take care of yourself.

Lil_Lisa

I promise you, you are so not alone with your feelings. I’m nearly 60, a very young 60, my daddy is 85 and after living with him for almost a year now, I’m still mourning him.

He's smart, funny and so thoughtful. I know that somewhere in his broken brain, that daddy is still in there. Now, I have an almost childlike daddy. He’s still very sweet and appreciative, thank God, but the daddy that I’ve known and loved for my whole entire life, is no more.

No matter how old we get, we still need our parents. I miss my mom everyday. She died of alcoholism in 1999. She was only 54.

Your mom is very young for her disease. I’m so very sorry but I DO get it. Much love to you.

housefinch

I’m so sorry you are going through this. I lost my dad at 23 to cancer, and although it was a very different situation, I was the only person I knew for years aside from my siblings who had lost a parent. You mentioned you had brain fog and dissociation at times. As someone else mentioned, I would really consider, if you have health insurance and are comfortable doing so, making a telehealth mental health appointment for yourself. And ideally with someone with expertise in trauma/PTSD. If you are having dissociation, you may need a trauma evaluation and treatment. Hugs to you.

Seen

Thank you for being brave enough to post your frustrations. I think that anger is natural and so is sadness. I thought I had grieved for my mom after her diagnosis but some months later it hit me again as she has shown more symptoms. We lost my dad when I was in my 20s and now in my 30s my mom has this diagnosis and so I too grieve the life and events I planned to experience with him and now her. I was actually advised to grieve her because you are experiencing a loss of sorts. Also I t sucks feeling like you have to be the parent to your parent. I have found an adult daycare or senior center with memory care to be helpful to allow me to work, rest or just disengage for some hours while she’s there doing stimulating activities and being looked after. I am now looking into home help care to assist for some hours for additional relief. Pull everyone that you can to help, just don’t burn yourself out and get counseling for tools to help navigate. Try to savor and enjoy the sweet parts of her while you can. I hope you find help and solace in something someone says and as long as you are doing your best that is enough, even if your best looks different on different days.

You’re doing amazing, much love to you!

etjames

Thank you for sharing your anger and alone-ness. I joined this forum this morning also feeling very alone and with no where to find other children caring for parents with Alz/dementia. Just reading your post and others’ responses has made me feel so much less alone. Most of the support groups I’ve been to are full of spouse caregivers or parent caregivers who are 15-20 years older than me, and I usually stop going bc my experience feels totally different from theirs. I talked to my PCP about my depression from caregiving and grief, and her help got me out of bed. @housefinch’s telehealth recommendation is a great one. It’s also a good idea to find anyone in your life who’s willing to support you — come by and drop off a meal for you, spend some quality time with you, or your own ideas about what would help you get through the day. You need care.

psg712

This is a great forum to get ideas from people of all ages who are giving care to a loved one with dementia. You are more courageous than you realize, taking on the role of primary caregiver at the age of 24. Definitely agree with others that you find some therapy, some respite from caregiving and an outlet for your grief. Being angry is natural. This is an unfair situation. But you can find ways to handle it that are healthy for you. Keep checking in and letting us know how you are doing. We care.

Elizab8th

https://alzconnected.org/discussion/67797/feeling-very-alone

Thank you for your post. You are not alone!