Mental Illness Grieving for a Lost Loved One Who Isn't Gone

This one has been occupying my thoughts a lot these past few days.

I make no secrets about the fact that I struggle, I have bad days just like everyone else does. Sadly, those days are coming thicker and faster for me, and while I'm trying my best to open up about those struggles (case in point -- posting this entry), but when people suggest I get help from professional sources I just can't. When I try to open up to doctors and therapists I shut down. I want to tell them everything, I want them to know what's going on in my brain, but it doesn't work. I have this innate skepticism that they're going to misunderstand me, that they're not truly going to know what it is I'm going through, not like people who have gone through it themselves will understand. I think that's why I can open myself up a bit more here and elsewhere, everyone gets it. No one judges.

Having said that, I still don't open up entirely when I do open up. I'm not good at it, I try to let it out and I still shield myself when it comes to the worst bits. But one of my most vulnerable bits is my brain as it relates to my thoughts about my mother. I've mentioned this a lot, but she's got dementia and I look after her full time, gladly. Recently, however, as my bad days have picked up in frequency and intensity, I've had one thought permeating my mind and I just cannot shake it. I've mentioned before that I know my mother isn't going to magically recover from this, that every step further down the road is a step we cannot get back, and that each progression is another moment closer to the inevitable.

These past five years, as things have progressively gotten worse, I've felt this sense of loss that grips me frequently. I know that my mother is gone. Physically she is still here, mentally she can have the odd few minutes of clarity, every couple of months, but ultimately, the person who was my mother is gone. I've known that much for a while now, and each time I think about it I start to spiral a bit. So it's got me wondering -- how do you grieve for the loss of someone when that someone is still there? Is it right to grieve for someone who is not, technically gone? How do you shake the feeling of loss when you haven't lost them yet, when they need you to be there for them? I get angry every time she has a temper tantrum just like a 5 year old, because she's scared and confused. I want to make it better for her, I love her, she's my mother, but in the heat of her tantrums nothing you can say makes it any better.

So again, is there a right way to grieve for someone you've lost who isn't actually gone. Is it right to feel grief in this case? How do you get past it and focus on looking after the person, or at least mask it so they won't see you suffering? I'm totally and utterly lost on this one, I can't get my feelings on track and I can't find it in me to know what's right to feel. So that's my newest struggle. A struggle I deal with daily, and that's been pulling me down more frequently than I'd care to admit.

Sorry to those that read this, it really went nowhere, and sorry to pile on to those who did read it.

 

[Foxy]

Please don't feel you are burdening us @PGen98, we're all here by choice. We're very lucky to have this supportive community forum where we can share our ups and downs.

I do both sympathize with you and understand your heartache from a personal perspective. My Dad had advanced stage Parkinson Disease and Dementia. We kept him home as long as we could, but the situation became dangerous, he needed around the clock monitoring. We had to put him in a nursing facility just a few blocks from our house. My Mom, who had been totally healthy and seemed twenty years younger than she was suddenly began to show rapid signs of physical and mental deterioration. Turns out she had a brain tumor. In the months following her diagnosis, surgery, rehab and relapse before going to hospice, I was trying to be there for both parents. At home, Mom went back and forth between being "pleasantly demented" to being obstinate and uncooperative while I struggled to care for her. I felt like I was being torn in half. At the same time I was working to pay all the bills, being harassed by Mom's HMO who didn't want to pay for her to stay in the hospital or for any home care, getting calls from the nursing home in the middle of the night that my Dad was being rushed to the hospital due to falls or pneumonia, all the while grieving the impending loss of my best friend who was my dear Mother.

Once in hospice, I asked my boss to let me start work an hour earlier so I could leave before rush hour traffic tied up the bridge not to delay my getting to her and he said no. He knew my Mom was dying and I only had weeks, maybe only days to be with her. It killed me that I had used up all my leave taking care of her at home and I had to return to work. The big boss overruled him so I did get to change my hours temporarily. I got to sit by her side until 2 am every night after work. I would grab a fast food burger on the way home, get a couple hours of tortured sleep and start all over again unless the phone rang at 4 am because my Dad was in trouble again and then it was off to the ER to see to his care. Add in a brother from far away who did nothing but add more pain to the situation instead of helping and my ADD brain was on overload.

Dad kept asking why Mom didn't come to visit him all throughout her illness and for two years after she passed. He thought she was seeing another man. He always forgot she passed.

I said all that to say I do understand what it's like to feel like you have lost a parent even while they still physically exist. Their passing was the "easy" part if one can say such a thing. The hardest part was having them here but not here at the same time. I wonder how parents of severely disabled children do it year after year. All you can say is it's an act of self-sacrificial love. I got through it with the help of my closest friends who prayed for us, supported me, cried with me and mostly my unshakeable faith in God who comforted me throughout the worst time of my life.

 

[PGen98]

Wow, @Foxy, that sounds like an absolutely horrendous time in your life. To have both parents going downhill so quickly at the same time, I can only imagine how horrible that must have been, and credit you for being able to cope with it all! You truly are amazing for having dealt with all of that, and I thank you so much for sharing that with me. It's an awful feeling having to lose someone so slowly like this, and yet having them already be gone at the same time. I don't want to lose her, but at the same time, I absolutely understand how her passing might be the easiest part of all of this, as horrific as that sounds to say.

Thank you again for sharing this, it means a lot to see I'm not alone in this limbo.

 

[Miho]

One thing I have been told over and over in therapy is that what you feel is real. And that its all ok. So even if the whole world tells you that you should not feel grief but you do feel grief than thats what you feel and thats ok. They are your feelings and they matter.

I never truly experienced anything like you did. Or what you have experienced Foxy for that matter. But I do remember one time visiting my aunt who had been real ill and was not "herself" anymore. She was a courageous woman. With heart and passion. And trying to do her best. But seeing in her the state she was in devastated me. And many others with me. So it felt as if she had left us earlier.

What I was thinking. Is it only grief? If your mum goes to a home or anything else. You will lose a big part of your every day tasks and things to manage. And the focus will shift to what you need and what you want.

Maybe that is a nice idea for your next blog? It makes me want to read your next one just as badly as your other ones. I am always glad to be able to get to know you even better.

 

[PGen98]

Thanks for that, @Miho, I appreciate the kind words. You're right, I shouldn't feel bad about what I feel, because that's what my brain is telling me is appropriate to feel. It just also feels wrong, because I've got this sense of loss built up in me, but I haven't lost her, yet. I am losing her, but physically the person who is my mother is still here, still kicking. So the grief of losing my mother, of having no one to talk to, of get advice from...it makes sense, but is also doesn't. It's such a contradiction.

You're right, it might also be apprehension at the thought of what comes next. I won't deny I'm scared of what comes after the caregiving. What's next for me? What do I actually want? I don't have a clue! I want her to be happy, to be healthy, the me part of life...I just don't know.

It's something I'll think about and may put into a blog entry. I'm not sure...it's a lot!