Advanced Dementia: My Mother has just passed... - Care Community

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Advanced Dementia

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My Mother has just passed away at 92 and was quite shocked when I collected the Death Certificate as it shows that she died of "Advanced Dementia and Frality Syndrome"

Prior to being admitted to Hospital approx 4 weeks before she passed,she lived in a Residential Home for about 7 Years and although they had been struggling with her to Eat and take her Medication, the word Dementia had not been mentioned or referred to. It took a visit from ourselves to get the local GP to call and admit her to hospital where she remained until her Death.

My thoughts now are could she have received better treatment that would have dealt with this ?

Any advice would be gratefully accepted.

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If you were happy with her care at the time, don't get upset about it. There is no treatment for dementia unless it is caught early (and then it can only delay, not cure it). Being unwilling to eat is normal.

It is likely that whatever the Home had done, the result would have been the same. Also you say it was a RESIDENTIAL HOME not a NURSING HOME, which could have made a difference.

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Thanks for your reply.

My concern is that no one had mentioned the word Dementia until we seen the Death Certificate.

My thoughts are that a professional body at some point would have explained what was going on and give me a explanation as to why my mother was not eating and refusing her medication.

Maybe I'm in denial but feel if I had known I could have taken steps to help her more and be more understanding.

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Maybe they just assumed that you would understand that she had dementia from her behaviour? My mother is in a NURSING HOME and I know that people are sent there from residential homes when their dementia gets bad. Maybe by confirming what was wrong with her, she would have been expected to move into a nursing rather than residential home, a move which may not have been good for her. A nursing home has a higher level of staff and more experience of dementia.

Only a suggestion, but have you discussed this with the manager of the home?

Dear Welshwarrior10,

Welcome to our supportive community, and may I offer our sincere condolences at the loss of your mother.

This is a very difficult time for you and your family, and no matter how old your loved one was, or how expected or not, the pain is felt keenly. This is heightened when our loved ones have been ill, and your shock is very understandable regarding the cause of death. It may be helpful to speak to her GP, the hospital doctors who signed her death certificate, and medical team that looked after her or even the coroner. I know it will not now change the outcome, but it may help you to understand why they wrote what they did, and have a chance to discuss this. It is only natural to question whether if you had known, you or the healthcare professionals could have done more for your mother. It can be difficult to accept the situation.

Dementia is a life-limiting illness, but the progress of the condition varies from person to person, and may have only recently come to light, and her behaviours may have been masked in some way, by her coping mechanisms which could have been stripped away in an unfamiliar hospital environment. You may be feeling guilty, that because you didn't know, you could have done more. These thoughts and feelings are understandable, and will take time to process, you need to go gently with yourself.

I'm sure you are aware of the stages of the grief cycle, and it will take time to come to terms with your loss. Sharing how you feel with your family, friends, this forum or other support network can help. As you see folks here are very willing to come alongside and support you.

Here are some links to the Alzheimer's Society and others sites with some helpful information:

alzheimers.org.uk/info/2004...

alzheimers.org.uk/info/2004...

cruse.org.uk/bereavement-se...

psychcentral.com/lib/the-5-...

rcpsych.ac.uk/expertadvice/...

Do take care,

Sending you our very best wishes,

MAS Nurse

Callendersgal
CallendersgalModerator

Hi Welshwarrior10,

I know it comes as a shock to learn something like this when you haven't been previously aware, and you obviously feel as though there has been some element of neglect on the part of the residential home.

As you are left feeling puzzled, I think you should ask the questions that you have, and if you approach this in a calm and formal manner, I'm sure someone will discuss it all with you.

At first sight, it would seem that the home was coping with your mum OK. I say this because I know that, with my sister who eventually died of dementia, there were frequent discussions about whether her home could cope, or whether her condition meant that she needed the further care which a nursing home provides.

And do consider that many of us who have reached residential care, do have elements of dementia and frailty. If, when you saw her, she seemed no more incapacitated than your average elderly person, I would consider the possibility that this is just a label to cover the majority of the symptoms she was showing towards the end, and not a definite dementia diagnosis. That's especially possible if the doctor didn't see her all that regularly, as you seem to suggest in your question. A doctor called upon to certify a death can only work with the general elements suggested in her medical notes. So it might not be the devastating condition you have in your mind. As someone who is interested in genealogy, I've looked at hundreds of historical death certificates and could point out some corkers that have ended up on death records over time.

But clearly you aren't all that happy, and it would be wrong not to do anything. For your peace of mind, you should go ahead and ask about what's puzzling or worrying you.

So sorry to hear about your Mum, it's such a sad time in our lives when we lose a parent at whatever age a part of our past has gone forever, I can understand your worry as you feel as if you could have done more for her if you'd known, I went through a similar thing with my Mother, I would definitely speak to your Dr or the home to find out why you weren't told just to put your mind at rest, though I'm sure your Mum was looked after appropriately, take care

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