I'm not sure, but I think losing my mother in this way sort of ruined me. Perhaps I am just weak.

syrac818

I first came to this forum over 10 years ago, when it became clear that mom's memory issues were more than just senior aging.  She was always my best friend and the best thing that every happened to me, and I knew I would lose her one day, but I didn't know it would be like this.  She was about 66 when diagnosed, and today she is 78 in the final stages.  She now requires 24/7 care and can no longer speak, move, and rarely opens her eyes.  I pray for her passing every single night.

I come on here, and I am just embarrassed to post about my feelings.  Through some lucky occurrence, I come from a family that has the means to hire full-time care that is excellent. Meanwhile, we have people living through much harsher circumstances almost entirely on their own who are somehow pulling through.  Almost as if they rose to the occasion.

I feel like I didn't do that.  I mean, I tried everything I could and held on to my mom as long as she still knew me, but at the end of the day I lost her.  And in the process I have entirely lost myself.  I am 42 now and I don't recognize the person I was before all of this.  I am much darker, much more sad, and I have isolated myself entirely.  I have developed substance abuse issues - heavy ones.  And most of all I just stopped caring.  Like.... this is it?  This is really how it ends?  This is the last 10+ years for a woman who volunteered for homeless school children, managed her own community garden, built two community centers, was one of the first female Peace Corps volunteers in Central America and literally saved lives?  This???

She would be horrified to know what she has become.  She deserved so, so much better.  All of those who suffer from this cruel illness deserve so, so much better.  I wouldn't allow my cat to be subjected to anything close to this torture because it's inhumane and unethical.

She should have been euthanized years ago.  She deserved that dignity.  And honestly, as much as I appreciate all the incredible work Alz.org has done along with related organizations, they're throwing cups of water at a burning house.  Death with dignity decided by family members needs to become a center point of this battle.  Until that day, we'll continue to watch those with Alzheimer's suffer an utterly inhumane death and we'll see family after family get destroyed both financially and emotionally trying to make it through this losing battle. 

I'm so lost and sad and angry....  I'll never be ok again.  And I'm not alone. 

ButterflyWings

(((Syrac))) Well said. I couldn’t agree with you more. You are so right, you are not alone in feeling this way. No need to feel embarrassed at all. Your mother sounds beautiful and brilliant. No wonder you miss her so. And you sound very depressed. Totally understandable. How could you not be? 

Can/have.you reached out to your doctor or even the alz helpline to get some help for you? I’m sure your best friend/mom would want that. I’m so sorry for your pain. I absolutely 100% understand. 

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ninalu

Oh Syrac, 

I'm so sorry for all of your losses; your dear mom, the life she loved, the suffering you've endured in watching her advance through stage after stage. What purpose, what meaning? What story do we tell ourselves and each other about these experiences and why they happen? What does it mean for life itself? 

I relate to feeling changed by Alzheimer's, which my mother has as well. Prior to encountering dementia, my ideas and experiences about aging and illness felt more coherent. I mean, of course we become ill and die -- I've held loved ones through illness and death before.
Dementia is different. All loss is hard, but dementia has unraveled reality piece by piece. A long, slow process of disassembling a mind, a life, an identity, a family, a history.
It's so slow at times that I start to wonder if it's an illusion, if I'm losing my bearings. 

I have few words to describe this to many of my real-world connections - people who haven't had their lives touched by dementia. The lack of words, for me, has made communication itself feel uncertain. 

I heard a physician lecturing recently. He said that medicine has somehow lost its way by forgetting to ask patients what makes their lives valuable and worth living. That they focus on life at all costs to the detriment of dignity and humanity and alleviation of suffering. No patient knows this better than a dementia patient and their loved ones.  

The community here - the caregivers and patients - we see and hear your experiences and feelings. You are never a stranger here, never forgotten. We hold you, and your mother, in our hearts. 

BakedAlaska

I don't believe you are weak, syrac. My wife and I have a code for when our minds go to the dark side -- we call it "the hour of the wolf", after something we read once. That "hour of the wolf" comes and goes, and if I think about the way my own mother passed, I can let the horror of it overwhelm me. 

We who witness the bad stuff do have a capacity to heal. I'm not chronically depressed, but I am subject to bouts of situational depression. For several years I used antidepressants, and was eventually able to find a life balance which made them unnecessary. Your description of being often lost in dark thoughts, and of needing to self-medicate ("substance abuse" is usually self-medication) makes me worried that you are trapped in situational depression. Do you think that's so? 

If you have not done so already, I suggest you try to find a good psychotherapist. Also, consider talking frankly with your doctor about the substances you are using and whether antidepressants might let you gradually change this behavior. (I have known really good docs and some really superficial, lousy ones; same for therapists. Find good ones if you can.)

You cannot help your mother now, but you must help yourself. 42 is too young to become lost.

MN Chickadee

Just wanted you to know I can commiserate on all of it. Some very dark times in the journey and the unfairness of it all is crushing. I have decided the only thing for me to do is move on the way my mother would if she could have. Like your mother she was always helping people. She would pick herself up and get out and help someone and be useful. I've started volunteering in a memory care facility, singing with a dementia chorus, and just trying to spread some good in the world even though my heart is heavy. I lost her a couple months ago. When she died I also realized I would never be ok again. A world without our moms is a terrible place. It changed me forever. But what can I do. One foot in front of the other. Live in her example. Raise my kids to be like her. Live with the grief.