What did everyone do?

[ARtone]

what I did and didnt do

Hi

Sorry about any spelling mistakes but trying to see through the tears is very difficult.

I looked after my Mum for 7 years, she had vascular dementia confirmed by a brain scan. This meant she had a number of mini strokes (TIA’s transient ischemic attacks).

The best way to handle telling others is to play it by ear, if they need to or want to know, then don’t hide anything especially with neighbours, you may need their help at some time in the case of a fall or missing person. Yes I had those events and many others. If they have to attend a hospital don’t offer dementia information, let them decide for themselves. The reason for this is that while dementia is undetected you and the patient are in charge. Once thay know then they will take over responsibility for anything they see fit. Despite how minor the dementia is. This attitude eventually led to my Mums death last October. A forced X-ray, despite mums fighting and verbal protestations under anaesthetic allowed her to catch a hospital infection giving her pneumonia from which she eventually died. She only went to the hospital because she had a pain in her leg. I warned them I was concerned about the procedure but they had the last say. Basically, they said, only 2 people can make decisions, the patient or 2 doctors. I was with Mum when she shouted and screamed that she didn’t want an x-ray. I am not a forceful person .but I made them allow me to stay with Mum each night for the following seven days despite their objections. Mum died on Friday 21 October at 3.06 pm. I was unable to get back to her in time. Day after day the tears come.

Mums civil rights were completely ignored. What dementia patients need is a proper evaluated dementia scoring system just as there is the Glasgow coma score. Stupid questions such as who is the prime minister are useless, who can remember his name? I can’t.

Mabel’s lad.

 

[martinjohn]

At the beginning what did you do about telling people about your loved one's diagnosis? Mum visited her niece yesterday (we don't have a lot of family left now as many of them have died or don't keep in touch). She mentioned to me on Facebook that mum had repeated the same thing a few times. Also she talks to her neighbours who have mentioned to me they have noticed some confusion. I feel disrespectful to mum telling people so I just brush over it a bit upto now. I know mum would be mortified if I tell people (I know she won't tell people because she doesn't really understand it). Did you tell people or just let them figure it out for themselves?

hi my name is martin i was told that i had alzheimers two years ago i am now fifty eight if people are to understand this horrible desease then we must talk to more people tell them how it effects not just who suffer with alzheimers but the people who have to care for us too the more who understand the more chance of some normality amongst us people that are around someone with alzheimers should be told it seems the a word is taboo this desease takes away our lives our whole being we become someone else my wife and family have been great we laugh cry sometimes has to be hard for them they see me as someone else not the man she knew not the dad my kids knew for everyones awareness in my opinion people should be told and also people do know when something is not right but it would be better to be told the proper terms for our desease for a better understanding for everyone sorry if i have rambled on and made no sense but its nice to talk while i can thanks to all who care for us yours sincerely martin john

 

[edwardp4]

no shame , dont worry,

I told everyone too - and they were all supportive. However it depends on the person's condition and whether they want people to know too - have to respect that. My dad didn't have capacity by the time I needed to let people know - I feel there's no shame in it, and we need all the support we can get.

I take my wife on cruses, we are in contact with up to 1,000 other pasengers, they can see for themselfs she has a problem, most want to help, some are conserned how they would cope in the same position & want to sit down & discuss what to do if it happerned to them,
Things like "the husband cant cook or look after the house or himself" & the wife has know idear about the finances of the family or the house,
They have lived togeather for many years, but have never looked into what the other one does or how they do it.
My advise is to start living togeather befor its too late
BAST WISHES TED

 

[gill dix]

Honesty

I didn't find it difficult at all. I was honest and gave some info. Nothing to be ashamed of after all...

 

[Ciboulette]

We told everyone in the family and then the postman, the vicar, the newspaper shop and so on - so that they could keep an eye open. Our friends have been terrific on the whole, but it is interesting how a few close friends simply deny that there is anything out of the ordinary going on. Quite hard to handle!

Best wishes. Ciboulette

 

[jaymor]

We told everyone when my hudband was first diagnosed 7 years ago. He continued to run his business and he thought it was better that everyone he had dealings with knew his condition. It worked fine for us. Neighbours were told and they too were fine and never minded him repeating himself or greeting them as if he had not seen them for years instead of days.

I can see no stigma in the word dementia. It is a disease of the brain causing it to slowly die. There is liver failure, kidney failure and heart failure. All three of these diseases have no stigma attached to them so why dementia. It probably come from people saying demented meaning mad. Dementia is not madness. I heard this morning on the radio that someone is diagnosed with some form of dementia every three minutes. The best way for our loved ones and the ones who have joined them today and the ones who will join them tomorrow and the next day is to be open about the disease and make sure who you tell has an understanding of the difficulties we encounter as carers. This way we will get understanding and maybe more money pumped into looking for a cure.

Many different illnesses come under mental health. I have a 17 year old granddaughter who has a sleep disorder where she can sleep for 24 hours and not be refreshed and fall asleep again within the hour. She lost so much time from school at one stage but now with medication is leading a full and happy teenage life. She is treated by the mental health side of the NHS. A friends grandson has ADHD and he too is treated by the mental health side of the NHS. No one thinks they are mad, why should they? So please lets ge it into the open so more people really know what dementia is and not think it is just loss of memory, only this way will we get the help towards finding the cure that may well help our grandchildren and their children.

Jay

 

[gardengirl]

tricky!

At the beginning what did you do about telling people about your loved one's diagnosis? Mum visited her niece yesterday (we don't have a lot of family left now as many of them have died or don't keep in touch). She mentioned to me on Facebook that mum had repeated the same thing a few times. Also she talks to her neighbours who have mentioned to me they have noticed some confusion. I feel disrespectful to mum telling people so I just brush over it a bit upto now. I know mum would be mortified if I tell people (I know she won't tell people because she doesn't really understand it). Did you tell people or just let them figure it out for themselves?

The love of my life has dementia which made him quiet - as quite a chatty person! Have told children and close family members and two neighbours - as others tend not to keep in touch have not bothered to mention it. When you do advise people react in different ways either helpful and kind or as they don't quite understand the illness, no longer keep in touch - so have limited my response to 'need to know'. It is difficult explaining to people, but try to keep advice to people I feel would understand. Good luck and try not to dispair with the attitude of some people!

 

[MrsTwit]

This is very difficult. If Mum had a broken leg, it would be obvious and no explanation would be required. If she had cancer, it would be up to her whom she chose to tell. Mum doesn't have the above - she has dementia. Mum doesn't remember that she has it so she can't tell anyone.
All the family have been involved in Mum's diagnosis and tbh, we all knew.
Mum wants to live independently for as long as she can. This requires the support of her near neighbours on a daily basis.
Our family and Mum's neighbours accept that dementia happens. It is a condition like many others. The neighbours have been told about Mum's dementia so that they understand the stuff that Mum does,.
However, Mum's perception of dementia is that it is "shameful". She would be horrified about people "knowing".
My issue is that with dementia, the "telling people" is not up to the sufferer - it is up to the family.
I do feel bouts of guilt about telling people against her perceived wishes; I just wish she didn't think dementia is something to be ashamed of.

 

[MrsTwit]

This is very difficult. If Mum had a broken leg, it would be obvious and no explanation would be required. If she had cancer, it would be up to her whom she chose to tell. Mum doesn't have the above - she has dementia. Mum doesn't remember that she has it so she can't tell anyone.
All the family have been involved in Mum's diagnosis and tbh, we all knew.
Mum wants to live independently for as long as she can. This requires the support of her near neighbours on a daily basis.
Our family and Mum's neighbours accept that dementia happens. It is a condition like many others. The neighbours have been told about Mum's dementia so that they understand the stuff that Mum does,.
However, Mum's perception of dementia is that it is "shameful". She would be horrified about people "knowing".
My issue is that with dementia, the "telling people" is not up to the sufferer - it is up to the family.
I do feel bouts of guilt about telling people against her perceived wishes; I just wish she didn't think dementia is something to be ashamed of.

 

[Anongirl]

Thank you. I'm slowly starting to tell people I think need to know and people who I think will support me and mum.

I try to put myself in mum's place. She has faced so much adversity over the years and this is yet another blow for her. She's a lovely, friendly woman and always has been. She doesn't want people to treat her differently, to see her differently. I totally understand and respect that. I've carefully chosen the people I have discussed it with because I know they won't treat her differently and will still see 'her' and not the condition.

She is dealing with this in her own way. She has even cracked the odd joke about it! If I had suffered all the loss and suffering she has I'm not sure I would be as strong. She's an inspiration to me x

 

[Scraggedbloke]

Our daughter's friends, father was visiting from Ireland and she was explaining to him that Annie had Alzheimer's.
He said, "It's a terible disease that the Germans bought to our shores"
"No no Daddy ............................" as she tried hard to convince him it had nothing to do with the Germans.

ScraggED Bloke

 

[Anongirl]

I bet she still didn't convince him Scraggedbloke!!