Not talking about the diagnosis seems to be the easiest way to 'stay positive'

[northumbrian_k]

When Alex was diagnosed with Alzheimer's in May 2016 we were given a wadge of documents which told us all about the disease and how to live with it by taking a positive attitude. She refused to read any of it as she said it would depress her. If asked today she would say both that she was bound to get the disease because it 'is in the family' and also that it is untrue as she has never spoken to a doctor about her memory and other problems and has never been diagnosed. She has never had a positive attitude to life in general so to expect her to develop one now that she has dementia seems unrealistic. I have tried to tell her (when asked) that some of the difficulties that she acknowledges are because she has a disease but all that achieves is to prompt her to ask me how long she has left to live because of her heart condition!

Not talking about the diagnosis seems by far the best way to deal with it as no good comes from trying to talk rationally when the ability to be rational is gone. This is not to shy away from or deny the fact that Alex's dementia can only worsen over time. I understand that and sometimes it seems that she does too. But by trying to create the most peaceful and relaxed atmosphere possible - including not talking about the disease - I at least have the opportunity to try to match up to the 'stay positive' approach. It is not an easy thing to do.

 

[mumbasi]

When Alex was diagnosed with Alzheimer's in May 2016 we were given a wadge of documents which told us all about the disease and how to live with it by taking a positive attitude. She refused to read any of it as she said it would depress her. If asked today she would say both that she was bound to get the disease because it 'is in the family' and also that it is untrue as she has never spoken to a doctor about her memory and other problems and has never been diagnosed. She has never had a positive attitude to life in general so to expect her to develop one now that she has dementia seems unrealistic. I have tried to tell her (when asked) that some of the difficulties that she acknowledges are because she has a disease but all that achieves is to prompt her to ask me how long she has left to live because of her heart condition!

Not talking about the diagnosis seems by far the best way to deal with it as no good comes from trying to talk rationally when the ability to be rational is gone. This is not to shy away from or deny the fact that Alex's dementia can only worsen over time. I understand that and sometimes it seems that she does too. But by trying to create the most peaceful and relaxed atmosphere possible - including not talking about the disease - I at least have the opportunity to try to match up to the 'stay positive' approach. It is not an easy thing to do.

My sister too has never wanted us to use the word Dementia even though she knows that is what she has, she, and we, call it extreme stress. And it is not really a problem, however now she is quite aware that she is having more difficulties especially with language. Today she told me that she knew she had this 'Ding, Ding, Ding' and was it going to mean that she would go too soon and she asked me how much worse she would get and would I be there for her. I could only tell her that today she was finding it difficult and tomorrow could be a better day, being positive really seems to help her. And of course I told her I will always be here for her as long as possible. She is 10 years younger than me. We can only do our best and find our way through this and I think you are doing wonderfully and we all know it is not easy.

 

[Moog]

When Alex was diagnosed with Alzheimer's in May 2016 we were given a wadge of documents which told us all about the disease and how to live with it by taking a positive attitude. She refused to read any of it as she said it would depress her. If asked today she would say both that she was bound to get the disease because it 'is in the family' and also that it is untrue as she has never spoken to a doctor about her memory and other problems and has never been diagnosed. She has never had a positive attitude to life in general so to expect her to develop one now that she has dementia seems unrealistic. I have tried to tell her (when asked) that some of the difficulties that she acknowledges are because she has a disease but all that achieves is to prompt her to ask me how long she has left to live because of her heart condition!

Not talking about the diagnosis seems by far the best way to deal with it as no good comes from trying to talk rationally when the ability to be rational is gone. This is not to shy away from or deny the fact that Alex's dementia can only worsen over time. I understand that and sometimes it seems that she does too. But by trying to create the most peaceful and relaxed atmosphere possible - including not talking about the disease - I at least have the opportunity to try to match up to the 'stay positive' approach. It is not an easy thing to do.

My Mum has vascular dementia and has never acknowledged it and it's never been spoken about by name.

When she first showed symptoms Dad was his usual ex-army no-nonsense self and would be blunt if Mum said or did something bizarre, "For Christ's sake, don't do that, you must have bl**dy dementia", which Mum would shout back at and deny.

If my Mum had acknowledged it and we could have been openly talking about it, sometimes I feel we'd be in an easier situation now. We have to skirt around it and just treat the falls, toileting accidents, magpie-like hoarding as everyday events which are quickly dealt with and then forgotten. Medical people we meet are pre-warned about Mum's condition and her abject terror of talking about it. It's the very large elephant in the room.

On the flip side, it's untreatable, so talking about it wouldn't help at all. Emotionally Mum is now like a baby / toddler so that's the most useful thing to guide us. If she's too hot, too cold, has a wet nappy, is hungry, thirsty, etc., she gets upset and you have to go through a process of elimination to pacify her.

I do allude to memory problems that I think she'll cope with. "Don't fret, I think it's just your memory playing tricks on you, happens to us all when we get older. You're doing well, I'll probably be as mad as a box of frogs at your age. Haha!" A quick chuckle together and we're off until the next episode.

It depends on the sufferer's personality before they got dementia. Mum was always the quiet type who would prefer to bury her hand in the sand rather than address things.

Dad has had three consultants confirm his Parkinsons, in writing, and he takes pills for it, and sees a Parkinsons nurse every 3 months, but he still believes he hasn't got it. So oneness hasn't helped him at all!!!

All the best,

Moog x

 

[Susisuster]

Coping with diagnosis

Hi, my husband has found that talking about his diagnosis is what has helped him, when he was diagnosed he became very depressed and suicidal, but then decided to make the most of life, and is passionate about challenging people's ignorance about dementia particularly young people with the diagnosis he was 54 when he was diagnosed . He finds it helps meeting other people with the diagnosis and also working with the Alzheimers society to make life better for people living with the illness, he says regularly he feels that it is accepting his diagnosis and telling people about it is what has made him able to lead a good life.

 

[mumbasi]

Hi, my husband has found that talking about his diagnosis is what has helped him, when he was diagnosed he became very depressed and suicidal, but then decided to make the most of life, and is passionate about challenging people's ignorance about dementia particularly young people with the diagnosis he was 54 when he was diagnosed . He finds it helps meeting other people with the diagnosis and also working with the Alzheimers society to make life better for people living with the illness, he says regularly he feels that it is accepting his diagnosis and telling people about it is what has made him able to lead a good life.

That is really wonderful that your husband can do this. I think the more it is discussed and especially with people that are living with it, then the more people will realise that more research needs to be done to eliminate this dreadful disease.

 

[northumbrian_k]

When I was still working I had a role representing my employer at meetings of the North East Dementia Alliance. There was a chap who attended the meetings with his wife and he had Lewy Bodies dementia. Not only had he recognised and accepted his diagnosis he became a role model due to his positive attitude and the insight that he brought to the meetings. I had hoped to continue my work with NEDA post-retirement - knowing already that my wife was showing signs of dementia - but my wife's way of coping with her disease has not allowed that to happen. Dementia takes many forms and I have learned that one cannot plan too much as things can be different from one minute to the next.

 

[Witzend]

To be perfectly honest, if any of us who have lived with it, and seen it only get worse and worse, which of us would 'feel positive' about a diagnosis for ourselves? Especially in the very early stages, when we would still understand what it was going to mean?
I'm very sure I wouldn't!

My mother apparently accepted the diagnosis from her GP, but had forgotten by the time she got home maybe 15 minutes later. We did gently remind her once or twice, but having realised that it only made her angry or upset, when she was going to forget so soon anyway, we saw absolutely no point in persisting.

 

[Moglie]

My Mum has vascular dementia and has never acknowledged it and it's never been spoken about by name.

When she first showed symptoms Dad was his usual ex-army no-nonsense self and would be blunt if Mum said or did something bizarre, "For Christ's sake, don't do that, you must have bl**dy dementia", which Mum would shout back at and deny.

If my Mum had acknowledged it and we could have been openly talking about it, sometimes I feel we'd be in an easier situation now. We have to skirt around it and just treat the falls, toileting accidents, magpie-like hoarding as everyday events which are quickly dealt with and then forgotten. Medical people we meet are pre-warned about Mum's condition and her abject terror of talking about it. It's the very large elephant in the room.

On the flip side, it's untreatable, so talking about it wouldn't help at all. Emotionally Mum is now like a baby / toddler so that's the most useful thing to guide us. If she's too hot, too cold, has a wet nappy, is hungry, thirsty, etc., she gets upset and you have to go through a process of elimination to pacify her.

I do allude to memory problems that I think she'll cope with. "Don't fret, I think it's just your memory playing tricks on you, happens to us all when we get older. You're doing well, I'll probably be as mad as a box of frogs at your age. Haha!" A quick chuckle together and we're off until the next episode.

It depends on the sufferer's personality before they got dementia. Mum was always the quiet type who would prefer to bury her hand in the sand rather than address things.

Dad has had three consultants confirm his Parkinsons, in writing, and he takes pills for it, and sees a Parkinsons nurse every 3 months, but he still believes he hasn't got it. So oneness hasn't helped him at all!!!

All the best,

Moog x

We could be twins Moog - my dad has recently been diagnosed with Alzheimers and is in complete denial and its 'everyone else that is bloody mad' and my mum is going for tests for Parkinsons at the moment. It never but it pours, hey!

 

[Moog]

Hi Moglie. With the Parkinsons make sure you chase them for regular Parkinsons nurse visits. They are usually based in the hospital. Plus, make sure you Mum gets a community physio visit - they give exercise routines using large rubber band things as resistance to strengthen muscles. The key is to get your Mum's legs as strong as possible as that helps with balance and walking. My Dad didn't go back after his first consultation where it was mild and to be monitored. Instead, he left it for 4 years so deteriorated unnecessarily, where he could have been receiving treatment and exercising more while he has more energy and muscle tone. As a former athlete he was in denial that his body could fail him. He only saw another consultant when GP noticed his frailty and ordered him to consultant and buy then he couldn't drive safely so I was in
charge of getting him to the appointment and I
could sit in. Just keep plugging away!! X

 

[Rageddy Anne]

Hi, my husband has found that talking about his diagnosis is what has helped him, when he was diagnosed he became very depressed and suicidal, but then decided to make the most of life, and is passionate about challenging people's ignorance about dementia particularly young people with the diagnosis he was 54 when he was diagnosed . He finds it helps meeting other people with the diagnosis and also working with the Alzheimers society to make life better for people living with the illness, he says regularly he feels that it is accepting his diagnosis and telling people about it is what has made him able to lead a good life.

That's a wonderful attitude, and so great that he was strong minded enough to adopt it. My husband denied his diagnosis at first, insisting that the consultant had some hidden agenda and would benefit from making a diagnosis. But after a while there were times when he agreed with me that telling people was a good strategy...and it did make life easier in some ways.

Getting him to admit the truth about things he couldn't do was difficult....he was sure he could manage our finances and wouldn't let me try to help. Luckily we had arranged our reciprocal Powers of Attorney..very important now that I have to unscramble the chaos.

Someone told us that it would help to switch from being joint owners of our house, to tenants in common. I still don't know why, but he did agree...

Giving up driving was tricky....but eventually we persuaded him that he had made the decision, and we gave him lots of praise about doing the right thing. The truth was the DVLA was going to stop him driving anyway, but he always thought it was his decision.

In some ways it helped to have told people about the diagnosis, some friends evaporated but we were glad of those who didn't. And we have made a lot of new friends too.

Bravo to your husband! Have you heard of Norman McNamara, and all that he has achieved? An Internet search should find him and his wife...

 

[Sandy Ridge]

Mum

We are still awaiting an official diagnosis, but it's very obvious that mum has dementia. Who knows how she will be. Although at the moment she worries more about the arthritis than the memory loss. She also sees people everywhere hallucinations presumably.

 

[Mayji]

My mum was officially diagnosed in January this year but it was obvious to me before that. She is constantly upset by her memory loss but still stays upbeat about the rest of her life. When she has a memory meltdown I reassure her that it's the disease that's doing it and that seems to calm her. She doesn't remember after that there was a problem!
She is also more concerned about her arthritis as it interferes with her mobility and is hoping to have her knee replaced. I worry about how the dementia will be affected but she is in so much pain that I hope the benefits will outweigh the risk.