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Question about grieving
Posted: Tuesday, July 16, 2019 11:50 AM
Joined: 7/16/2019
Posts: 12

So my LO is still alive, in the midst of the disease. But I have been having some internal stress and turmoil, and I have a strong feeling it is because I realize that my mom is already gone. But because it didn't happen suddenly, it's a different process. Her personality slowly changed over the past 5-10 years, and now she is nothing like her old self, and I know it's probably never going to come back. But due to the changes, I slowly distanced myself. I knew there was no need to hurt someone's feelings, by telling them the relationship had changed, and that she had become self-centered. So I would just let her talk, vent, etc. But our past relationship as mother and child was amazing, and then as friends, during my adult life, was also excellent. So there is a huge chunk of amazing time, and an amazing person, who is gone now. But because it happened so slowly, I never felt any grief over it. I just assumed that she was changing as she got older, and that was fine. But now that we are into full-on delusions, hallucinations, etc, I have realized that we are on that final ride down to the end. But I know that once we get there, I will be relieved that her pain and confusion will be over. I hate seeing her suffering. But I know I am experiencing stress due to the lack of grieving. Because I know I have experienced a loss, but because it wasn't sudden, it hasn't hit me. I guess I'd like to know if any of you have experienced the same thing, and if there were any things you did to help. I also wonder how you deal with grieving the loss of someone, while they are still alive, still around? It seems like you can't really get past the grief, if you are reminded of it all the time. It's just a confusing situation overall, and just looking for other people's perspectives.
Posted: Thursday, July 18, 2019 7:09 AM
Joined: 1/8/2016
Posts: 365

Hello BCD,

Welcome to our community & at the same time I'm sorry your here. But, you will find the best support in navigating the world of Alz on this site.

So, what you are describing is called Ambiguous Grief. This is a loss that happens when a person has Alz & they are physically there but you are losing them mentally. Or, for those who have lost a loved one who has disappeared and they don't know if they are dead or alive. There are other examples, but you get the idea. This type of loss doesn't allow you closure. And, that's why it's so difficult to heal from this type of grief even when they do pass.

This site was and still is the best thing that helped me when I was caregiving for my mom and since has passed. I have made several friends and one special person who has become my best friend. This is a world only someone who is in it will truly understand what your going through and your feelings. So, this is where you want to be in order to get through it all. Hopefully you have a good support group at home with your family & friends as well. Work, hobbies, pets or any healthy distraction when you can will help calm your spirit. Everyone copes in there own way. I hope you find this site and the people here a big source of support.



Posted: Friday, July 19, 2019 3:05 PM
Joined: 1/17/2016
Posts: 914

BCD, grief is such a complicated thing.  My mom has been gone a little over a year and there are so many uncomfortable feelings that still come and go.  I was like you in that my mom and I were very close for many years.  She always listened to my stories, was always on my side and never ever judged.  We would shop for hours on end and many times she would have more stamina then me.  My mom was 32 years older then me, but was smart, beautiful and a lot of fun.  I think when we have had a good relationship with our parents, it is complicated in that we are also losing a friend.

When my mom became ill, it was difficult to recognize.  She was always a strong women and when I would ask questions (she lived one state over) she was good at saying she would look into it, was looking into it or had taken care of it.  She fooled me for about 2 years as she was declining.  My father and brother had passed many years before and it was just mom and me.  Mom was retired, financially comfortable, lived in her home alone and visited my family often.  When it became apparent that I needed to bring her to live in my state so I could keep a closer eye on her, she was probably at the end of stage 4.  It was a difficult transition because she even told me, you are now the mom and I am the child.

She knew she couldn't handle many things any longer and allowed me to take care of things.  It sounds like it would be easy, but it wasn't.  I have a family of my own and I was now seeing mom every day in the beginning and then I settled into two times a week.  I had to move her from an AL to another AL and eventually to MC all within the 3 years she was here.  I was constantly making decisions for my own family with teenage kids and also doing the same for my mom.

If your mom's delusions and hallucinations are making her life miserable, then medication is probably necessary.  If they are not, then you ride it out.  My mom went through that stage when she was at stage 5, but she wasn't uncomfortable and I would just agree with her on many things.  I guess this is big part of where you will have to eventually get to.  You will have to both take care of mom, but try to live in the moment and take each day in a more positive fashion.  Is she really suffering or is it you?  Is she in physical pain?

The loss is gradual, but if you can take her out of lunch, watch a movie with her, listen to music or perhaps work on a puzzle while she watches, these can be special moments.  The more you can do to create a smile for the both of you, the better you will feel now and when she is gone.  This is my perspective.  It was the toughest 3 years of my life (and I have had cancer and other physical illness in my time), but it was also rewarding.  My mom stayed fairly stable through stage 4 and 5 and I now look back thinking mom and I both did those last 3 years well.  She passed as 86 in my arms listening to her favorite music.  It was a short hospital stay and a few days on Hospice at our MC.

Posted: Friday, July 26, 2019 11:42 AM
Joined: 7/16/2019
Posts: 12

I guess for me, it's not about closure. It's about the slow change in the relationship. I guess it would be the same if you have a best friend, or a spouse, and over the years, you grow apart. It's so gradual, you don't experience the same grief as you would if they had suddenly died in a car accident early on in the relationship. But even when you slowly grow apart from someone, you may still care for them, still have a long history, and a lot of love for them. But the day-to-day relationship has slowly changed to the point where they are a totally different person now. So it's just confusing, when you do have that history with them, and you do love them, and yet the person you are talking to, is a totally different person from the one you remember. It's almost like the slow changes rob you of the grief you would normally experience, with losing someone who was important to you.
caregiving daughter
Posted: Wednesday, October 9, 2019 7:29 AM
Joined: 11/27/2012
Posts: 2131

At the end, I didn't feel like I grieved. My spouse said to others that they didn't think the loss of my mother had hit me yet. I do feel though that I grieved, as you said, over the last ten years.
Posted: Tuesday, October 15, 2019 8:27 AM
Joined: 8/12/2017
Posts: 251

BCD, my heart goes out to you.  I understand that wishing for the full-on anguish, so there could be catharsis and release.  So that you could feel "normal" about what you are experiencing.  I am aware of ambiguous grief.  I call it grief by installments.  As the person that the LO was, gets taken from us bit by bit, the relationship and hope and sadness erode over time as well.  In my view it is not lack of grieving on your part.  I think your psyche knows what it is doing all along, to help you toward the ultimate loss. This to me is much more normal, that feeling empty or simply dull, at least that is how it happened when I was losing someone to dementia.  And don't be surprised if it does hit you.  So much harder still to be younger and lose a parent.  Take care.
Posted: Sunday, December 1, 2019 9:24 PM
Joined: 4/13/2019
Posts: 15

As a daughter who cared for and recently lost my father, I can tell you I experienced something similar when he was alive. I grieved when he passed a lot even though I didn’t expect to. I think I was numb when I was dealing with the disease. I’d expect you will be surprised how much you will grieve afterwords. 

Take care.