This is a post for those who are grieving someone who suffered from a condition before their death that had changed their personality. Although they were still present in body, their mind and behaviour had changed, and they weren’t ‘themselves’.
When did you start grieving? If your loved one suffered from a mental illness such as depression, bipolar, schizophrenia, personality disorder, etc., if he or she suffered from dementia, or their mind deteriorated due to a neurological condition such as Parkinson’s, your grief might have started long before they died.
No matter the actual cause or physical circumstances of their death, the fact that in many respects they “weren’t themselves” even before they passed away is the particular pain of this type of loss. It is as though we lost them long before they physically departed.
I have long since realised that when I grieve for my daughter, I don’t only grieve for her death, but I also grieve for what she suffered in life through her bipolar disorder.
I can’t say I understood my daughter’s mental health problems as well as I wish. At the time of her first diagnosis, I had no experience in my professional life that could have given some context or background. I learned more as the years went by, and tried to support her the best I could, but I still did not grasp the depth of what she was going through. I’d had my own ups and downs, but I had never experienced severe depression – the kind that stops you from getting dressed or getting washed or eating or wanting to lift your head up from your pillow.
Neither had I experienced psychosis. In bipolar disorder, schizophrenia and the like, it is not uncommon for the sufferer to have a distorted idea of reality. Delusions – believing things that are not real. Paranoia – unrealistic fears. Hallucinations – seeing things that are not physically there. Supporting a friend in the midst of an acute depressive crisis, I discovered that severe depression can also result in this type of disordered thinking. (Read more.)
It seems there can be similar issues when you’re grieving someone who had dementia, Alzheimer’s disease or even Parkinson’s.–Any conditions where the person might still have been present in body, but their mind and personality had changed.
That is one reason why our bereavement can start long before our loved one dies.
The person we love might be sitting in front of us, but the person we love does not have the mental capacity or awareness that they used to have.
As their personality and mental state changes, our interaction with them changes, and so we grieve a relationship that we are no longer able to have.
We grieve for the sweet child who has been replaced by someone we hardly know.
We grieve for the parent who cared for us over the years but now does not remember our name.
We grieve for the partner whom we promised to love in sickness and in health, who is now not even aware of who we are.
We might also be grieving on their behalf, knowing that they would have been so unhappy to have ended up in this state. Perhaps they had spoken of a fear of being like this; now they have.
We grieve at our powerlessness to change things. We can’t make them better. We can’t help them regain what was lost.
In the case of mental illness, there might be times when the person is okay again; they’re back to themselves. Maybe there’s been a period of hospitalisation, medication and treatment. It might have been a gradual recovery, but they come to the point that they’re “them” again. But we are painfully aware that this disconnection with reality may happen again. In fact, if there’s already been a pattern, chances are it will happen again. And so we grieve knowing we’re going to lose them again, and again, and again.
Once they have died…
We took many a deep breath when they made unkind comments or out-of-character behaviour, knowing it wasn’t “them” speaking or doing, but their illness. Once they’ve died, we might be haunted by those comments and actions. We might struggle to remember what went before – the kind and lovely person we knew before their illness took a hold. It might take awhile to sort out those memories. For some, there is a feeling of relief that their loved one’s suffering is now over, but such relief can also be mingled with guilt.
And then there are the questions. Did we do the best we could? Did we help them get the treatment they needed? Did we give them unconditional support and show never-ending love? Were we there for them, come rain or shine, day or night? Or did we sometimes lose patience? Did we wait too long to get them to see the GP or a specialist? Was it right really for them to be placed in a home or under the care or others? Could we have delayed it? Would things have been better if we’d taken more time off work to be with them? And on and on it goes.
These are questions that rarely have adequate answers. Hopefully in time we will conclude that we did the best we could, at the time; with the knowledge we had, at the time; with the strength and love we had, at the time. More than that, we could not do.
We may also have questions about the care they were given, whether as an inpatient in a hospital or within the community. Was their care adequate? Were the decisions taken in their best interests? Did the mental health professionals understand them? Were they correctly diagnosed? Was the medication right for them? Did the medical staff give up on them in some respects?
Some people bereaved in these circumstances will find themselves involved in a ‘Serious Case Inquiry’ by the mental health services, or eventually have to deal with a complaint process and/or an inquest. This is all very difficult to deal with and lead to quite reasonable anger, but it can also prolong and intensify our grief. Our focus will necessarily be on our loved one’s worst times, up to and including their death, and this will not be easy to bear.
Finding people who understand
Grieving the death of a loved one is never easy, but if your loved one had in some respects already left before they died, then it can make the process of grief even more difficult to navigate. And that’s one reason it can be very useful to participate in some sort of moderated support group – on the internet or in person – where you can talk about your experiences with other people who have been similarly bereaved.
Because the facts are:
There are over 700,000 people in the UK with bipolar disorder and over 800,000 with dementia. At any one time about 220,000 people are being treated for schizophrenia.
About half a million people die each year in the UK. I don’t know how many of those people had a mental health disorder, but over 60,000 deaths were due to dementia alone, according to recent stats.
That’s a lot of families, partners, children and friends who are grieving this complicated grief. However they might feel about their loved one’s death itself – perhaps relief that their suffering was over – it is likely they had already been grieving even while they were alive.
And if any of this applies to you, then you really are not alone. You are certainly not the only person who is experiencing such a loss. And you just might find it helpful to talk with people who have been bereaved in a similar way.
At least, that has been my experience. Talking with other mothers whose adult child had suffered from mental illness and/or taken their own life was a tremendous help in the first year or two after Catherine died. Our situations were in some ways unique but also had elements in common. We had similar battles, faced similar difficulties, endured similar heartbreak. (Thank you, the Compassionate Friends.)
What comes next?
Not feeling alone in your grief is an important part of your self-care.
Have a look at the Links on this page, have a search through, and somewhere there you’ll find an organisation that supports those are bereaved in a similar way.
Support groups aren’t for everybody, so fortunately they aren’t the only way of not feeling alone. You can read other people’s experiences. Very many people write as a way of processing their grief, so there is an abundance of material to choose from, books and blogs.
If you’d rather learn about the condition your loved one had, rather than other people’s experiences, there are plenty of sources. However, watch out that you don’t start regretting that you didn’t do this earlier. Chances are, you were busy taking care of your loved one or other aspects of life, and research was not your priority.
Finally, remember your loved one was more than their “condition”. Try where possible to focus your thoughts on the better times, when they were as you would like to remember them.