Coping with a father with dementia in my 20s

tmjenks

At the behest of my therapist, I am looking for the support of others going through similar circumstances as I am. I feel incredibly alone in my slow grieving process for my father, who is 68, and has been dealing with EO dementia for the last two years.

I feel completely out of my depth as a 28 year old person without the space/finances/ ability to care for my father in the way that I would like to. I am working on building my career, recently got engaged, and have struggled with anxiety and depression for years. My mother is his primary care giver, but she is struggling with borderline personality disorder, and I worry that her care is already not enough for him at the stage he is at.

Before my father's diagnosis, I was working in therapy on not parenting my parents anymore, something I felt I had to do growing up because of my mother's mental health issues. For my own well being, I have tried to take a step back and let them make their own decisions, but now that my father's physical well being is at stake with his dementia, I feel I have to try and get more involved again.

I would love any advice anyone has on the uncomfortable situation of being a young adult without many resources to offer, who worries about her father and wants to help. Also, if anyone has any wise words about how to deal with grieving someone who is still there, it would be much appreciated.

Thank you.

machelriller

I'm 35, so I'm a little older, but I can definitely relate. It is really isolating to go through this when so many peers are years away from dealing with parental care. I lost my mom in 2020 after many years of health problems and my brother and I did a lot of caregiving for her. Now that my dad has dementia and is living in MC, I'm basically the "head of the family." It feels really weird because a lot of my friends are having kids of their own (something I also would like to do!), and they're getting support from their parents, and I'm in such a different position than they are.

In terms of ways you can help, are there pieces of caregiving that you could take over from your mom? For example, I was the one who managed my dad's finances, and spoke with doctors, when my brother was living with him as the primary caregiver. I was able to do that while living a few states away. (This doesn't help with the parenting your parents issue, which I also REALLY relate to!)

Other than that, I don't really have advice but feel free to message me if you want to chat.

M1

Welcome to the forum. I'm glad you have a therapist-dealing with your mother may in some ways be harder than dealing with your dad, though believe me i am not minimizing your grief. I would think you may need to set concrete parameters regarding what is acceptable caregiving for your dad, and what you will do if your mother is incapable of being that caregiver. You may also have to think ahead about what her needs may be after your dad is gone. Do you have siblings who can help? Do you hold power of attorney for either parent?

tmjenks

https://alzconnected.org/discussion/comment/207928#Comment_207928

I appreciate you reaching out. I am definitely trying to figure out right now what caregiving pieces I can take over from my mom (who doesn't want to relinquish control but is in over her head).

It's super weird to feel like I need to take on the role of "head of the family". I am sorry to hear that you are in a similar circumstance.

tmjenks

These are all good questions! I think I need to look into what it takes to become power of attorney down the line.

It is something that scares me but I think will maybe become necessary.

Smilescountry

I would suggest getting the legal things done now. If the attorney determines that your dad is not competent to agree to a POA, things get more difficult. Hopefully, your mom will agree. Do they have that set up yet? Next, it is important to have a financial plan because that will determine your care options as this progresses. Glad to hear that your therapist has asked you to reach out!

H1235

I find stress in the unknown. Not knowing what to expect is difficult. For me learning more about dementia, what to expect and financial and legal options gave me some comfort and direction. Finding great resources and sharing them with your mom might help her. What should she be doing legally and financially? These things might give you a purpose and help your mom. Just an idea, everyone is different. It’s all very difficult.

JDancer

I'm so sorry you have to deal with this, especially at your young age. I hope you're also reading the comments on the caregiver forum. Several young adults have posted there recently.

nitebird

I feel you!

It's so hard to watch my dad disappearing. Like any kind of grief, it is not a linear process. There are times when I am saddened to the point of barely wanting to crawl out of bed or off the couch. Times where I am angry in some way… angry that he is disappearing mentally or he is more unpredictable emotionally, angry that I have to be the one to deal with this while my brother is busy posting all his pics on FB of his latest trip to some fancy resort or an expensive night out or whatever and has told me that I can let him know "when dad is lost in the woods in his underwear". He rarely bothers to call and hasn't actually been in the same room with our parents in over 7 months. (Sometimes I want to call or text him and tell him, he is about as useful as a poopy flavored lollipop!). Times when I just feel overwhelmed, sometimes to the point of being numb. Times when I find myself bargaining or begging God to just make this all go away. Times when I want to be like my brother and just leave my parents to fend for themselves…. but I know my conscious would not tolerate that for long. Moments when I am grateful that even though dad is not himself, I can still hug him, tell him how much I love him and try to etch into my memory the feel of that hug because I know the day is coming when that will no longer be possible…. it's bittersweet.

I find music helpful. I have play lists for good days and bad days.

A holistic practitioner gave me some pretty useful advice as well:

#1 - BREATHE. It's easy to hold our breath when we are hurting, physically or emotionally. Lack of oxygen just compounds it. So, breathe. I got a smart watch that would alert me when my oxygen dropped. I was surprised at how often I was holding my breath. A couple deep breaths several times a day has made a difference in my over all ability to cope.

#2 Turn something simple into a mini 'self care'. I now wash my hands for a good couple minutes. I get the water to my ideal temp. Take the time give myself a mini hand massage with the soap lather. And rinse well past the point of needing to get the soap off just to enjoy the warm water. At home and work, I have scented soap that I love, just for this purpose. It now takes me a full 3 minutes or more to wash my hands and I feel less tense and overwhelmed after. It's a cost effective way for me to get some much needed 'self care' on a daily basis.

Hope that helps!

rhun1320

https://alzconnected.org/discussion/comment/207928#Comment_207928

Hi machelriller,

I'm 34 and my Dad has alzheimers. He's 70 years old. My mom was diagnosed with Stage 4 ovarian cancer in 2020. Dad was diagnosed shortly after I got married in 2023.

I understand...I, too have felt like a fish out of water. People around me my age have families and have their parents asa support system. My mother is doing miraculously well, but I definitely try my best to minimize the stress on her life. My Dad on the other hand, he's not eating, drinking and refuses his meds. We're exploring hospice for him and I really don't know how much time he has left. I know the lack of nourishment will bring on death prematurely.

Anyway, I say all that to say I understand and empathize with you.