Feel angry-need some answers

[overwhelmed1]

My father was diagnosed with Alzheimer's 2yrs and 4 months ago. He died this Christmas Eve of (on death cert) pneumonia.

However, I truly believe my father had lewy bodies as he had symptoms of parkinsons and alzheimers and maintained a level of awareness of his disease all the way to the end. He was 72 when he died.

I feel the medical professionals didn't really know what they were doing and I feel angry.

If he did have lewy bodies and this has not been recognised, how many more people are not diagnosed properly and so the UK stats wrong?

Why isn't dementia adhered to on death certs???

 

[fizzie]

Hello Overwhelmed
I feel your pain, my Mum died in hospital the previous Christmas and so I am a little more distanced now but I feel that pain when I move back there still.

I can't answer your question about Lewy Bodies - I'm guessing a post mortem would have shown that up possibly.

I still have an ongoing complaint with the hospital as their care of dementia patients and families and their end of life care is still as appalling as it was a year ago. I won't let it go until I get improvements and monitoring. They are not very helpful but they have chosen the wrong sparring partner.

I didn't want dementia on my Mother's death certificate as that wasn't the cause of death, she died of pneumonia, I know others have a different view but in my opinion dementia is often not the cause of someone's death although I have a horrible suspicion that hospitals don't put it down not because they are sensitive or considerate but because that might be too close to acknowledging that it is an health problem and the responsibility of the NHS and therefore have funding implications. The lots of them push people around to avoid financial commitment like the plague!

I'm sure others will have different opinions.

Take care of yourself at this sad time x

 

[min88cat]

I think quite often death is caused by another problem e.g pneumonia, rather than the dementia itself.

 

[LadyA]

My husband died in August, having been (finally) diagnosed in 2008 with Alzheimer's disease, although lewy bodies was mentioned as a possibility as he had some of the symptoms - then that was revised as, as his illness progressed, he did not show any further signs of lewy
bodies dementia. Just as every person with dementia is an individual, so every journey through the illness is individual.
The illness makes the person much more vulnerable to various infections - like pneumonia, particularly aspiration pneumonia, where, as the swallowing reflex weakens, tiny particles of food, liquids and even saliva can be inhaled and end up in the lungs. My husband died of aspiration pneumonia. On his death certificate under "Cause of death and duration of Illness" it says "aspiration pneumonia. Alzheimer's disease 7 years." The pneumonia is what actually caused his death, but without the Alzheimer's disease, he wouldn't have had aspiration pneumonia - so I was glad his illness went on the death certificate.

 

[Onlyme]

I have seen pneumonia with dementia or something similar on relatives death certificates. For a long time it was taboo to mention dementia and it is only recently people were ok with it on the death certificate

 

[Saffie]

Like Lady A, my husband died of aspiration pneumonia. However, it was the dementia which caused the poor ability to swallow which led to the pneumonia. Both the aspiration pneumonia and vascular dementia were listed as cause of death on his death certificate.

 

[LYN T]

Like Lady A, my husband died of aspiration pneumonia. However, it was the dementia which caused the poor ability to swallow which led to the pneumonia. Both the aspiration pneumonia and vascular dementia were listed as cause of death on his death certificate.

My late Husband died of Aspiration pneumonia but I agree with Saffie and Lady A -it was his AD that bought on the pneumonia because his swallow was so poor. Pete had a post mortum that stated he died of both conditions. On the second line it stated that COPD was a contributory factor. Pete had asthma from a few months old BUT it was very well controlled by daily exercise (he played squash until his early 50's/ran/cycled etc). As his AD progressed he wasn't able to exercise apart from walking. His asthma developed along with chest infections-subsequently the diagnosis of COPD.

I was relieved that AD was given 'equal billing' on the death certificate as so many people die with all kinds of dementia and it;s never mentioned. It will never be given the importance/research it needs by the medical world if it's ignored.

Love

Lyn T XX

 

[Sue J]

I have a horrible suspicion that hospitals don't put it down not because they are sensitive or considerate but because that might be too close to acknowledging that it is an health problem and the responsibility of the NHS and therefore have funding implications. The lots of them push people around to avoid financial commitment like the plague!

I couldn't agree more. I don't trust most of my Drs as far as I could throw them in that respect. I am not someone who is not open to hearing the truth yet they wont discuss things with me except one, who recognizes that the failure of the others to treat me like a 'normal' human being is detrimental to my health, I will not let them brush me under the carpet or off their files, not whilst I'm still breathing anyway

I think quite often death is caused by another problem e.g pneumonia, rather than the dementia itself.

but it should then say secondary to dementia because as Lady A, Saffie and Lyn T have said it is the dementia that is the primary cause.

 

[fizzie]

I think you are right but my mum had dementia but her death was caused by a chest infection and lack of hospital care, she would have survived had they kept her hydrated and warm - basic care in my opinion so dementia was not the cause but they could have put 'caused by hospital staff'

 

[LYN T]

I couldn't agree more. I don't trust most of my Drs as far as I could throw them in that respect. I am not someone who is not open to hearing the truth yet they wont discuss things with me except one, who recognizes that the failure of the others to treat me like a 'normal' human being is detrimental to my health, I will not let them brush me under the carpet or off their files, not whilst I'm still breathing anyway

but it should then say secondary to dementia because as Lady A, Saffie and Lyn T have said it is the dementia that is the primary cause.

Keep fighting when you are able Sue. You are a star

Love,

Lyn T XX

 

[sleepless]

I feel it should be on the death certificate.
We are familiar with the figures given out as to how many people there are with a diagnosis of dementia, but these figures will not tally with how many deaths from dementia, unless it goes into the statistics. I regret that dementia was not on my late Mum's death certificate, because the way she died would not have happened had she not had dementia.
Maybe cancer and heart disease attract more funding due to the number of deaths caused, I don't know. I don't recall hearing or reading of a figure of how many deaths a year are due to dementia, and the fact that it is sometimes not on the certificate perhaps explains this.

 

[Sue J]

Keep fighting when you are able Sue. You are a star

Love,

Lyn T XX

I can't stop fighting Lyn and wont, am afraid I leave a few people with fleas in their ears but I'd rather have a flea in my ear than this wretched illness.

You're a star!
Lots of love
Sue

The fact that it is not acknowledged whilst alive, let alone after death, is detrimental to sufferers and families. I still come on here and have to say I have dementia symptoms but am undiagnosed - only those with 'diagnosed dementia' get help from AS as I was recently told by a dementia support worker when trying to get help for my friend (who of course has had it for years and never told a soul her diagnosis because she forgot it and NHS and SS left her to get on with it.) The dementia SW went very quiet when I said well how can you help me get a diagnosis then? They want to wait until I deteriorate so much I can't speak for myself anymore.

 

[fizzie]

Sue Can you ask your GP for a referral to the memory clinic for a diagnosis? I'm sorry I have missed something important here and I don't understand xx
I too think you are a star and I really value all your comments, they help me to understand so much more thank you xxx
Fleas in ears are very important, they make people scratch and scratching produces a result xxxxxxxxxxxxxxx keep producing fleas x

 

[Sue J]

Sue Can you ask your GP for a referral to the memory clinic for a diagnosis? I'm sorry I have missed something important here and I don't understand xx
I too think you are a star and I really value all your comments, they help me to understand so much more thank you xxx
Fleas in ears are very important, they make people scratch and scratching produces a result xxxxxxxxxxxxxxx keep producing fleas x

I refused Memory Clinic for over 65s as I was late 40s when symptoms started, and I didn't know what was happening to me not unusual for me to not want to go, the GP wanting to refer me there also told me 'local psychiatric care was poor' Other caring experiences didn't need him to tell me that but not reassuring at all. I don't mind if they tell me that's what they think, i.e. that I have dementia despite my refusal at least I know where I stand, if they wont then I want to know why they are not investigating my symptoms more via a neurologist.

I am glad what I write helps you to understand Fizzie, I have an acute awareness that a lot of sufferers neither have the insight or ability to communicate what is happening to them and it pains me greatly that they are not heard because they can't speak and that they/we are so often so misunderstood. I don't have the sensitivity of expression that I know once did which is a change in my personality since commencement of my symptoms.

I think I'll aim for a flea circusxxx

 

[fizzie]

That is interesting hadn't thought of it that way. That's why they don't want to do it!!!
Cost em money and have a massive health implication, you can't have large numbers of people dying from something and then not address their care as an health issue!! Good let's catch 'em

 

[overwhelmed1]

I was told by a health professional that dementia is seen as a social care issue that families are left to deal with as opposed to a healthcare issue. i.e my father started with lewy bodies I believe at 65 so it is not a natural aging process, it is a horrific disease I shall never forget witnessing. I have never seen a human being so distressed and wretched x

 

[fizzie]

I'm so sorry overwhelmed. I understand that Lewy Bodies is one of the worst types of dementia there is - i thought (naively) that it was almost always funded by CHC. I am truly deeply sorry that both you and he had suffer such a terrible disease xx

 

[Sue J]

I was told by a health professional that dementia is seen as a social care issue that families are left to deal with as opposed to a healthcare issue. i.e my father started with lewy bodies I believe at 65 so it is not a natural aging process, it is a horrific disease I shall never forget witnessing. I have never seen a human being so distressed and wretched x

I agree with all you write overwhelmed and am sorry for what your father suffered and you witnessed.

Health and social care should go hand in hand in my view not either or. If it continues to be seen only as a social care issue means sufferers will never receive the care they need. How many, when a care home is needed are assessed as needing 'residential' not 'nursing' homes, because of cost. Everyone suffering dementia has nursing needs, more so because there are no cures symptoms and problems have to be managed to aid and ease quality of life. It is a disease and not the effects of 'old age'.

It is distressing and wretchedxx