Grieving my dad

lonelymouse

Hello everyone, I'm new here and I hope it's ok for me to post here even though I'm not a caregiver.

I'm 24. My dad was diagnosed with frontotemporal dementia almost 6 years ago, during the summer between my freshman and sophomore years of college. My parents are both in their early 60s and my mom is my dad's primary caregiver. I live about 4 hours away.

It's been a complicated 6 years to say the least, including graduating college in the middle of covid lockdown, moving to a new city, starting my first real adult job, getting engaged, etc. I've struggled with my mental health since I was a teenager but more recently I've come to accept that a lot of the depression and turmoil I'm feeling now is because I've just been carrying the grief of slowly losing my dad, unable to do anything about it.

So I'm trying to do something about it by trying to connect with other people going through something similar, but it's hard. I recently reached out to a grief support group for young adults and was just told today that I don't qualify to join because I'm grieving someone who isn't dead yet. So what am I supposed to do? Just carry this pain until he dies? He might live another 20 years as far as we know.

My dad recently reached the point of needing constant care. I feel so guilty that my mom is taking on this burden without much help. I don't want to talk to her very much about my grief and other problems because she's already dealing with more than she can handle. I am pretty much the only person she can confide in, which means I end up emotionally supporting her a lot. I'm scared that some day I'll end up taking care of my dad.

I feel so alone in this. I'm just hoping for any guidance that anyone can give me about how to grieve someone who's still alive.

Thanks to anyone who's still reading, I know this was a crazy long rant.

M1

Welcome to the forum, and of course it's okay that you post here. I'm so sorry that you are dealing with this at such a young age. In my opinion this forum is the best possible place for advice and support of all kinds. Maybe it would help your mom too.

For me it's my partner who's affected (I'm 68, she is 83). And all of us are grieving someone who's still alive: we lose them before we lose them. There are lots of terms for this, including ambiguous loss. Everyone here gets it, be it that we have a spouse, a parent, a grandparent, or a friend who is affected by this terribly difficult disease.

If you read a lot of threads and post a lot, you're learn a ton, and you'll feel less alone, I guarantee. There are others here your age in similar circumstances.

fmb

I am so sorry that you have the need to be here, but you are in a good place for support and information.

I am grieving my DH who has late-stage ALZ and other co-morbidities. When my ambiguous grief was overwhelming, I tried to join a faith-based grief support group only to be told they couldn't help me because DH is still alive. It was recommended that I find a therapist/counselor who specializes in caregiver issues/ambiguous loss. Despite living near a large city, I was unable to find anyone in that practice area who took my insurance and was taking new clients. If you want to go that direction, you might have better luck where you live.

One thing I did do was read "Loving Someone Who has Dementia: How to Find Hope while Coping with Stress and Grief" by Pauline Boss. Among other issues, she covers the concept of ambiguous loss in this book.

The Alzheimer's Society of Canada website has a link to a good brochure on grief and ambiguous loss at the following website

https://alzheimer.ca/en/help-support/i-have-friend-or-family-member-who-lives-dementia/managing-ambiguous-loss-grief

I hope these resources are of help. Come back often and feel free to post. You do not have to be a direct caregiver to love someone with dementia, and there are many here in your age group. This is a great community, and we are all here to help.

psg712

Welcome mouse, definitely here you will find folks who understand the grief of losing someone who is still living in body but not the person that they once knew so well. There are so many layers to this loss. Yes, most of us are older than you are, but there are young people here too who have parents with early onset dementia.

You are facing losses on many levels. At your age, as you launch a career and prepare for marriage, you should be able to count on the support of your parents as you do a lot of adult things for the first time. But your dad is not able to provide that kind of support now, and your mom is consumed with his daily care. Do you have other adults close to your parents' age that you can rely on? Aunts/uncles, family friends, trusted faith leaders?

Please don't give up on finding a support group or a good individual counselor. You need that for your mental health. Perhaps focusing on finding support and getting started in your job are enough to handle right now. How well does your fiancé understand your situation? This can put a lot of stress on a marriage, and newly married couples already have so many adjustments to make ... all I am suggesting is don't rush it.

I miss both of my parents, but in different ways. My dad died with several medical problems 14 years ago … and my mom has advanced Alzheimers now. The grief is real for each but experienced differently. It's also true that we grieve for the hurt we see in others - as you are concerned for your mom and the stress she is under. Please encourage her to seek outside support too. You can be there for her, but it's not fair for you to carry the entire load of her emotional need.

Keep us updated. We care.

lonelymouse

https://alzconnected.org/discussion/comment/207727#Comment_207727

Thanks for your kind words. My fiance has been a huge support through this, and she's willing to help me care for my dad if it comes to that. I don't have many older adults to lean on because I grew up very far away from my extended family. Honestly, my future MIL has been more supportive than any of my relatives.

I have been seeing a therapist for several months -- that's what made me realize that I need to confront my grief and work through it instead of treating it as "out of sight, out of mind". I'm going to keep looking for other supports.

psg712

https://alzconnected.org/discussion/comment/207770#Comment_207770

You are so courageous. Many, many people run from grief as long as possible rather than facing and working through it. I'm glad your fiance and future MIL are supportive. You don't necessarily need a huge team of support people - a few loyal and loving folks are a blessing. And keep working with your therapist if you have found that helpful. We are here for you too.

Anonymousjpl123

Hi Mouse, just joining in with others in saying I am glad you found this forum, though I am sorry for what you’re going through. It’s a lot to have to deal with at your age, and just as you are starting to forge ahead with your own life in many ways. I’m really glad your MIL is supportive. It sounds like you are a caregiver of sorts to your mom, and dad, so I think you will find a lot of support, wisdom, and understanding here. This disease is exhausting and unique it the toll it can take on caregivers and families. It’s really good you are reaching out.

wctraynor

I'm so sorry the grief support was making you feel less than. My mom went through grief counseling when my brother went irreversibly mentally unstable, in order to grieve the loss of the son he once was. I didn't understand it at first but now that she has dementia, I totally get it. She leaves me a little everyday. Its an excruciating pain. Her mind is elsewhere while her body is living and breathing right under my nose. It feels like a cruel sick joke. I'm glad you didn't give up looking for support. We are here for you.

tmjenks

Hey,
I feel like we are in similar situations. I'm 28 and my father has been dealing with EO dementia for the last couple of years. My mom is his primary caregiver and I live a couple of hours away from them with my fiancée.

I find it beyond overwhelming to try and deal with the slow loss of my father, and it is something that none of my friends have been through. At this age, most of my peer group is only familiar with dementia if it has affected older members of their families.

I am trying to build my career, plan my wedding, and deal with my own mental health-- which has always been difficult. I've been in therapy for years and that really helps, but I feel very alone in this circumstance much of the time.

I just want to let you know that you aren't alone-- there are other people going through similar circumstances and the slow grieving process of losing someone while they are still alive is valid and awful.

I hope you can find peace in this. I hope I can too.