am i to blame

[VeronicaHa]

My mum had dementia and she could shower alone, but sometimes had dizzy spells. She had been staying in bed a lot, which I thought was to do with her being depressed because my dad had passed away the previous year. Actually, she probably wasn't well, but I don't know. 

She went to have a shower and I went downstairs to make her something to eat, but she fell in the shower. She died days later. She was in serious pain after cracking ribs and she got pneumonia. I feel like her pain in her final days was my fault and that she died because I neglected her. I should've been with her.  I can't stop feeling like this and it's been almost 2 years since she died.

I'm struggling and I can't talk to family about it either as I don't want to talk about it as I think they'll blame me too. I feel beyond awful that my mum suffered in this way. She didn't deserve it. 

[MissingMa]

Hi Veronica:

Although the circumstance were different, I ask myself the same question about my mother's death:   did I give her too much medicine, too little medicine, should I have tried to get her to take in more liquids or less?

The hospice grief counselor tell me this is normal when you're the primary caregiver when a person dies or suffers in some way that leads to their death.  Although it doesn't permanently take away the question, they remind me - in the case of my mother - that she had been diagnosed by multiple doctors as a person's whose "condition was not compatible with continued life" (as the kind gerontologist put it), that my mother had - in her right mind and under her own will - selected to enter a hospice program, and that I'd done exactly as she'd wanted in bringing her home for her final weeks.   Her death, a day earlier or a month later wasn't my fault or under my control.   

I still sometimes wake up wondering if I've done one thing different....but then I have to talk gently to myself about remembering that I don't control life or death and that what I can focus on instead is that I honored my mother's wishes as her life came to its end.

So, I hope maybe you can find some comfort in this same advice.   Your mother had clearly been diagnosed with an illness that was going to lead to her end.  You were doing your best to care for her in a loving and supportive environment.   It wasn't in your control to determine how and when she went - just that you were doing all you could to honor her and provide for her at her end.

 

 

[sadandlost]

Dear VeronicaHa,

I’m so sorry for your loss.  My mum had dementia too.  When she was still able to shower and dress herself but slowly I remember saying can I help you Mum?  Do you need help?  No she replied, are you sure Mum?  Yes she said.  I waited outside the bathroom just standing there waiting.  Then I went  downstairs and suddenly I heard a crash.  I ran upstairs and she was lying on the floor.  I could not get her up.  She was ok but in shock.  I had to call someone to help me.  It was the beginning of her spiraling downward, strokes and dementia worsening.  I still look back on that year and remember all the details.  It’s still hard 16 months later.  I still think I could have done more etc..  I miss her terribly.  She was such a strong and independent woman with so much dignity.  Dementia is a cruel disease.  It robs you of your relationship even when they’re alive.  There is the grief that happens when they’re gone and the grief that starts when they’re alive.  I truly understand how you feel.  I feel the same but you have to understand that guilt is part of the grieving process.  I wish I knew how long it takes but I don’t.  I’m very sorry for your loss.

[VeronicaHa]

Thank you sad and lost and Missing Ma. It helps when people like yourselves are supportive as it makes me feel less alone. Sorry for your losses. It is a cruel disease.

I'm on a waiting list for grief counselling, but I know it could be a while. I waited until I felt the grief was less raw before I asked about counselling.  I realise that my feelings are to do with my guilt, but I don't think I can get through it without help. It's all I think about it. The happy memories are locked away somewhere and I always come back to this, the final days, the final hours. It will be two years since she passed away in two months time. Sometimes I feel that I should be over it by now, but I clearly am not. I wish I knew how long it would be too. I want to remember the good times - pre-dementia.

 

[niall]

Veronica, as you have identified, dementia is an awful affliction, robbing us of our loved ones as we knew them before they die. It has no cure and those afflicted do not get better. 

I told myself this repeatedly when my father fell ill with dementia. My guilt persists that I could not do more for him — travel to his city and care for him more. But I could not. I had my own young family to care for. In the end, it was pneumonia, too, that killed him. Not to be forgotten is the fact that our health care system is simply not set up to care for people with dementia. My father was young upon his diagnosis (68 years old), but physically well. He was soon labelled a danger to others because of his size and unpredictability. He was institutionalized and sedated. Once he was immobile, it was only a matter of time before he caught something his body could not fight off. It is not right that children, often with very little support, have to become caregivers to their parents. 

Guilt is very much part of the cycle of grief (part of the Bargaining phase). I say this to assure you that your feelings are NORMAL. Normal and temporary. I encourage you to work through your feelings, as they will shift over time. Your guilt may turn to other feelings like anger and denial over time, only to return to guilt and the other stages. As I have been counselled, the only way to pass the grief is THROUGH the grief.