Still grieving diagnosis

PaulaAtlanta

My DH of 41 years was diagnosed in August, following the spinal tap. We are beginning a clinical trial at Emory and are going through the set-up stage. He has been, and still is, the dearest man you could imagine. I’m just now seeing more of the glazed look in response to a question, some directional confusion, and repeated questions or comments. We are very early.

He was my rock through three years of chemo, radiation, more chemo and then a year’s clinical trial for aggressive breast cancer. I was just getting strong when Covid hit followed by his diagnosis. Our children live in Ireland and TN, but the TN son is doing well just taking care of himself. He’s two years clean and working in a half-way house. We are so proud of him, but even after vaccinations, he can’t be here to help me. (Atlanta, GA)

As we begin these classes for the clinical trial, I realize that I haven’t fully accepted this. That I’ve been hoping for zero progression. That I’d like to put my head in the sand and stay there, please. When your LO was first diagnosed, what did you do in grieving the loss of him/her. I’m trying to live in the moment, but some nights I’m just so sad.

Thank you. New here.

mommyandme (m&m)

Hi, welcome, I’m sorry you’re here though. 

I do not have any wisdom here for you as my caregiving situation is much different.  I’m sorry no one has seen this post before me. You may want to post this on the spouse forum, you may get a lot of wisdom there too. 

Wishing peace for you both. 

star26

Welcome to the forum Paula. Grief related to dementia is a unique beast. Instead of grieving and suffering one major loss, the loss and grief caused by dementia is so prolonged and multi-faceted. There's the grief, fear, shock, etc from the diagnosis and then new episodes of grief as certain "loss milestones" are reached during the progression of the disease. None of it really goes away in my experience, it just ebbs and flows. And then on top of the constant undercurrent of sadness, caregivers also face exhaustion, resentment, worry, frustration, overwhelm, etc. My intention is not to depress you more by saying all of that, I am just trying to convey that what you are feeling is normal and okay. Saying you are "still" grieving sounds like you think you shouldn't be. Especially after all you have just been through with your own health and your son, it is quite a devastating blow to be hit with this just when you are all starting on the road to recovery and looking forward to better times ahead. I think it's great you have DH enrolled in a clinical trial and that you are reaching out early on and assessing your support system (and lack thereof). If I could start-over on this journey knowing what I do now, I would be much more gentle and kind towards myself from the start, including making decisions based on taking care of me too and not just taking care of the PWD. I've found that gentleness, kindness, and compassion towards myself are helpful with grief. When I soften and allow the feelings, acknowledge how hard the situation is, and treat myself accordingly (like how I would treat a scared and sad child), it helps somehow.  I'm sorry I don't have a magic answer for you to make this all better. This forum is a great resource for you, both for practical tips moving forward and for support and understanding. Professionals have their value, but the wisdom from people who are in your same shoes, or maybe some steps ahead of you, is priceless.

dayn2nite2

Is the clinical trial his idea, the doctor's idea, or your idea.  Unless he was adamant that he must do this trial, I would reconsider.

Yes, I know the altruistic "for the greater good" reasons, but frankly they are a pain in the butt and require lots of visits and things the patient doesn't tolerate too well.

Look at the timeline of the trial and how long it goes on.  Does it require many visits and procedures?  Lots of time?  How cooperative is your DH and how much does he want to do this?

If the trials before had amounted to anything I might have a different opinion but there hasn't been even one new drug developed yet.  If it were me, I would rather spend those hours doing something with my LO like an enjoyable outing or a walk.  Spending that time sitting in exam rooms and waiting for things that probably will amount to nothing seems like a waste.

Apologies to those who have belief that these trials amount to anything, you have your opinion and I have mine.  I don't know of any new treatment since I started dealing with this disease 20 years ago.  I do know of many failed trials.

LaurenB

I think that the grieving process is unique to all of us.  I've worked in this field for 20+ years and saw my LO's diagnosis long before others.  Still, I know the exact date that the dr said the word "dementia" to us.  I cried everyday multiple times a day for 2 months.  Now, I can talk about it without crying and have found a great online support group for caregivers of all sorts of people.  We meet virtually every Tuesday night.  My LO's spouse is in denial and only recently verbalized that the diagnosis "was like a gut punch."  LO's son seems to be living his best life and never communicates with us.  I have no idea how he is reacting to it. 

Lauren

jfkoc

Hi Paula.....My 2 cents of wisdom is to tell you that your grieving is spot on normal. I could tell you all kinds of positive thing but none of it does much good when the grief washes over. What did I do? I cried by myself a lot and sometimes went outside and screamed. I had numerous arguments with God...not prayer...arguments explaining just how things should work.

I did accept a script for an antidepressant. 

Please know that we understand and please know that we are here for you.