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Coping with adjustment
mcast
Posted: Wednesday, October 30, 2019 9:48 PM
Joined: 10/28/2019
Posts: 2


Hi everyone.
3 years ago, I lost my father to Vascular Dementia.  He was an early onset case being diagnosed at the age of 53, though due to his stubbornness to see a doctor early on, I suspect it had already been going on for a while by then.  He also developed Parkinson's a couple of years into his diagnosis and also took a fall which required brain surgery and left him with a seizure disorder.  I had the fortune of being the youngest son and ended up staying at home to help my mom take care of him for about 11 years right after college.  While I'm grateful that we were able to take care of him at home and keep him surrounded by family the whole time, it definitely took a large toll on both my mom and I.
I recently attended my local Walk to End Alzheimer's for the first time since my dad's passing, and while it was a great event to see how many people are affected and working toward the common goal of eradicating the disease, it opened up a lot of fresh emotional wounds for me and has been really affecting me for the past week.  Memories (both happy and sad) have been flooding back over the past week, including some painful memories of my dad's decline that I thought I had filed away for good.
I guess I'm not entirely sure what I'm expecting by joining this forum and posting here, but hoping to maybe read about other younger adults who walked a similar path and how they are coping with the adjustment in life after losing their loved one.  I'm finally living on my own this year for the first time since college, and while I'm physically managing it, emotionally it's been a bit of a struggle.  Finding the right people to discuss this with has also been a struggle, with how hard it is to find other younger caregivers who have experienced the care at home path.  I guess I'm also hoping that leaving this here might be a bit of a form of healing, and hopefully sharing this experience will be helpful to someone else.

TessC
Posted: Wednesday, October 30, 2019 10:55 PM
Joined: 4/1/2014
Posts: 5213


I was recently thrown off the caregiving grindstone, so I cannot relate to your exact issue since my loss is still so fresh, but I know there are good folks here whos loved ones passed away years ago and they still feel the loss very strongly.  Like you, I also took care of a parent in my home for years and years. I'm sure I will also have "flashbacks" to the times it was excruciating painful to watch my mother suffer the various assaults that occurred due to Alzheimer's. During those times I felt sick. That kind of trauma doesn't fade away easily.

 I think the emotional part of watching someone decline and died in front of our eyes can lead to PTSD. And recovery from that takes a lot of time and sometimes the intervention of a therapist. I am sure you will get a lot of support here, but you may need the help of a professional. Many people here see one, at least for awhile. I'm going to one tomorrow.

Please write often because you are right-writing down our feelings often help us see things in a different light and help by having our feelings validated and to be understood. Good luck and hope we can help/


mcast
Posted: Thursday, October 31, 2019 10:45 PM
Joined: 10/28/2019
Posts: 2


Thanks for the kind words.  I remember where I was the first few weeks after my journey with my dad ended and the funeral was over, and it was definitely a very uneasy few weeks.  The emptiness of not having to do any of the caregiving tasks like feeding, showering, or just plain old keeping an eye on my dad really emphasized how much of my day I spent on him when I wasn't at work.  Having all that time back and not knowing what to do with it was something I struggled with a lot (and still do even today).  I do keep hearing that taking up a new hobby is a good way to fill up that time, but at least in my case, not being able to step away for a couple of guaranteed hours during my dad's journey for so long is making picking up a hobby and sticking with it really hard for me.  I'm still working on trying to fill that time, but it has been going very slowly for me.

You are right about getting the help of a therapist.  I do have one I have been working with for several months now, and just had a very good session with him today to discuss some of the feelings of anger and frustration I had around the memories resurfacing and how that caregiving journey unfolded.  Although there is still a long way to go, I feel like today was the first really good step I have had in a long while.

I guess the one piece of advice I might have for you is to find ways to your story and experience with someone trustworthy (whether that is a trusted friend or therapist).  Working through all the feelings and emotion is pretty key to moving forward.  Remembering back to when my father passed, I didn't really have anyone to talk to, so I mostly just tried to work through all the emotions myself.  My mom was ready to move on quickly, and she did take on the brunt of the caregiving responsibility, so I felt like any issues I had would pale to hers, and it would be a burden on her to discuss what was going on with me.  Also, having spent most of my non-work time on caregiving tasks and missing out on a lot of my young adult years, I never really got to grow that network of friends or trusted people I could feel comfortable sharing my caretaking story with.  Because of that, I have been basically working through the feelings on my own these past 3 years (and frankly doing a pretty awful job at it).  I really wish I was at the point where I was comfortable enough to post my story here 3 years ago while it was still fresh, where maybe I could have worked through all the emotions and conflicting feelings much earlier and at least gotten to a point where is was at least manageable much faster.

Hopefully that helps.  I know we all have differences in how our caregiving journey unfolded and the resulting burdens we carry may be different from each other, but hopefully there is enough commonality where knowing my experience post-caregiving can help you define how you want to tackle yours.


TessC
Posted: Friday, November 1, 2019 1:44 PM
Joined: 4/1/2014
Posts: 5213


Thanks mcast-it does help to hear your story-kind of a cautionary tale about not letting feelings of loss get pent up, because sooner or later they will surface and make life and living difficult.

  It helps a lot that I have a spouse who tries to cheer me up and think of ways to support me. From what you said, you may not have had that same support. It's good you came here because we can now be that support system.

Good to hear you had a productive session with your therapist. I think it's important to look forward to the future because it can be bright. Just thinking about a good future for myself and husband made all the difficult years manageable for me.  Please think along the same lines-your future is not dictated by the past. It is made by the dreams you make and follow now. Good luck!