Death, dying and dementia
Death, dying and dementia - a personal account.
Please note that some may find this personal account of death, dying and dementia distressing - it goes with death and dying.
My mum has just died and I don't want to go to sleep, because it means I will be waking up, without her in my life, tomorrow. While today she was alive and is still part of today.
Death comes to all of us. Mum's body just shut down. She died and her spirit left her. The dementia finally beat her.
It started with a courtesy phone call from the nursing home that mum, who had advanced dementia, was having some trouble breathing and they asked if I wanted her sent to the hospital. I said yes and asked if I should meet mum at the hospital, the nice lady said she would phone me back when the ambulance leaves with mum, so that I could then go to the hospital. There didn't seem to be any rush or any emergency, so I thought mum was going to be fine. Just another short stay in hospital and she would be out again. No chance of her dying this time I thought.
About thirty minutes pass, the phone call comes and I head up to the hospital, still not realizing she was dying. Told I can't see mum just yet as the doctor still had to assess her. So I sat reading a Harvey Norman catalogue. Then I go on to a magazine. Then I'm told I can see her - about another 20 or so minutes have passed.
So I walk in, still thinking everything will be fine.
The doctor tells me it's really serious and they have real doubts that she will make it, that on a scale that runs 3 to 15 for level of consciousness mum was sitting on the lowest level of three. He explains that they can't get the food out of her lungs that is causing her breathing problem, but that they will start her on antibiotics. The dementia had affected her ability to cough the food out and so now she was dying from the effects of the dementia.
He also asks whether I wished them to try and revive her should she die given her advanced age (A few weeks off her 87th birthday) and dementia. I replied yes.
He also asks when I last saw her, which was five days ago, on mother's day - we'd visited her at the nursing home for dementia sufferers, as we'd only just got back from Adelaide following Carolyn's major surgery down there; we were suppose to have her visit us on the Monday, the next day, but the weather was really stormy so we thought it better for mum to stay dry in the nursing home, as we were always concerned she might get sick and die from a cold (the advanced dementia had left her in a fragile health state).
He then asked me to look at her eyes and at first I didn't notice what was concerning him, her eyes had a distinctive dead fish glaze, I replied mum was fine on Mother's day, Sunday - thoughts of her being abused rushed through my mind.
Then she died in front of me, I went round to the other side and put my hand on her arm and prayed again I think, as staff rushed in to revive her I stepped back to let them work on her and was ushered out by a security guard who was also someone I knew. I had about five minutes with her.
Although her death was sudden, in those five minutes I was there, I had walked up to her, bent over so I would be in her line of sight, said hello, I'm Donald, your son and was stroking her face, which I think she always liked. I think I also prayed for her to be healed at that point as well.
As far as deaths go, it was a good death, she died with a loved one with her, showing her affection and love. I had always been concerned she would die alone.
In the waiting room the guard fetched me a phone and tissues and I called home and said mum had died and for everyone to come up. The guard and nurse tried to assure me that things may still come good, that they were still trying to revive her. I knew the prognosis was pretty dismal, the odds of her not dying were very remote.
I was then ushered into another room and was asked If I wanted them to keep trying and I said yes, whether I wanted the respiratory machine to be used, and I said yes.
I knew that her ribs were being broken, that her lung may be punctured and all the other horrible effects that go with trying to revive the dead - fight off the death - but any chance is better than none. Mum was still an important member of the family, the dementia had no control over that.
The doctor then came in and said that in spite of their best efforts, that she had died and they had been unable to revive her. Her heart, which had always been as strong as an ox, just wouldn't start up. At least my family had arrived and we all begun grieving.
As she died within one hour of coming into the hospital, the coroner may have been required if mum's general doctor wouldn't sign the death certificate for cause, this meant that after she died, all we were allowed to do was view her body and hold her hand - after mum was made to look presentable after the attempted resuscitation.
The police also showed up and I was asked to confirm that the body was that of my mum.
They later phoned me at home, letting us know that mum's doctor had agreed to do the death certificate.
Mum was a very nice, warm and loving person, who was always generous and kind and devoted to church. As I walked out the hospital doors to come home, I noticed it was raining and reflected on a comment someone said about the violent storm on the night Carl Gustav Jung died, like the whole earth had mourned his passing. With this night, I saw a gentle, tender rain, bringing more relief to a drought stricken land - a very fitting tribute to my mum in her death I thought.
One thing that I guess still needs to be mentioned, is that everyone will die, the elderly will normally die much sooner than the young. When we realized several years ago that mum would likely die within the next few years, prematurely because of the dementia, we opened a funeral fund - a prepaid funeral by installments - so that we would not be financially hurt by the cost of her burial and funeral rites. Now that her death has happened - and so unexpectedly - at least I know her funeral will be nice and that the funeral is all paid for; we don't have to worry about coming up with lots of money during this grieving time, just to give her a proper burial.
The prepaid funeral has proved an enormous psychological relief, allowing us to deal more directly with mum's death.
With out the prepaid funeral, I think we would have all been stressed out and arguing over what we could afford for the funeral and the feeling that we had short changed mum in her death may have been a very uncomfortable memory to have. The prepaid funeral allowed us to spend 1000's of dollars on mum's funeral, over several years and we were able to prepare for her death, knowing we were buying her the type of coffin and so on that matched her tastes.
Well I went to sleep and woke up, phoned my distant cousin and let her know that my mum had died and she said something really really nice. She said mum had waited for me to show up, that although she was called to our Heavenly Father, she wanted to say goodbye. When I told Carolyn, my wife, she said she'd been thinking that all night, that mum had held on just long enough for me to see her before she died.
The funeral home was contacted this morning, notified of mum's death and they will be visiting us tomorrow to sort out the funeral arrangements.
Tomorrow has come and gone.
The prepaid funeral has turned out to be worth it's wait in gold, in ways I didn't even think of. All the questions you get hit with when someone dies, like their father's name, mother's name and so on, couldn't answer and didn't know where to find the documents on short notice, but with the prepaid funeral plan, it turned out I had gathered most of the information and given it to the funeral home years ago. To have had to go hunting so soon to the death would have been quite torturous.
We went through many facets of the burial procedure during the visit - the funeral attendant came to our home and imparted information we didn't know anything about, such as five days is normally enough notice for people to get to the funeral, the preparation of funeral notice for the newspaper - interestingly, when I used the term "died", he said the proper term to use was "passed away".
I miss mum and wish she hadn't died, but she is with our Heavenly Father now and all her needs are met with Him. Mum doesn't need me, likely doesn't even think of me, as all her needs are now met perfectly and she is basking in His light. This faith in the Heavenly Father and what He is likely doing for mum, has helped me considerably in coming to terms with mum's death.
After approximately seven years since entering the nursing home, the vascular dementia ended her mortal life, but now she is dementia free forever.
In hindsight, I do have to wonder if mum's dementia had robbed her of her ability to focus on more than one thing. When I touched her face, was all her focus on trying to keep breathing disrupted? Did I distract her and cause her death? If I hadn't touched her, would her death had been averted for a few more years or months? In hindsight, particularly when death and dementia is involved, or even just a death, we often find reasons to feel guilty without trying.
If you find yourself in this situation, think of me and mum and remember this: "What if mum had died and I hadn't touched her face? ". Hadn't said "I love you" and she died anyway. Death and dying is so intense and permanent. I acted as a loved one would. Hindsight or not, I did the right thing. I let her now that she was loved and cherished in the final moments of her death. How could she have a good death if, out of fear, we were never able to express our love at such a crucial time? How could we live with ourselves, knowing we refused to show our loved ones love when they were dying?
Death, dying, dementia - it's hard in so many ways.
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