Hi. I'm new on here and just wanted to ask for some advice. My MIL was diagnosed with Alzheimer's last week. It has been quite a shock really as she only started showing definite symptoms this year. It has made our husband and I feel very guilty because we haven't noticed before. Anyway, she has declined very quickly over the past few months following the death of my FIL in May. She had a fall and is now living with us until we can get a care package in place for her to return home. She is in total and utter denial and got very cross with the psychiatrist who diagnosed her maintaining that there is nothing wrong with her apart from a bit of memory loss that all old people get. This is obviously not true - her memory is very, very bad, she gets confused and disorientated easily and forgets who her grandchildren are, who her children are and whether I am married to her son etc etc. I don't think she has taken in the diagnosis at all. I don't know if she understands what it means or what the future will hold for her. Having said all this, she seems quite happy and settled, we have a laugh, and she loves her crosswords despite not being able to answer hardly any of the clues. So my question is ... do we attempt to tell her exactly what she has and what she can expect? I am in two minds. My husband really doesn't want to upset her and doesn't see the point in distressing her. I keep thinking she has a right to know but at what cost? TIA. This forum seems incredibly supportive and a great source of information. I might be on here a lot!
What to tell her
- Thread starter lindz
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I'm with your husband on that one. There is no point in distressing her. Dementia is not like other illnesses where people can understand and discuss a diagnosis. It's almost a symptom itself not to understand and think there is nothing wrong with you. There is even a fancy name for it starting with a. I'm sure one of my esteemed colleagues will remember the name. 
Be grateful she is happy and settled and do nothing to disturb the equilibrium! There is quite a helpful article here on how to best communicate: https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
Be grateful she is happy and settled and do nothing to disturb the equilibrium! There is quite a helpful article here on how to best communicate: https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
Anosognosia is the fancy medical term that perhaps Beate was referring to.
The brain damage from the disease, means that the person with dementia cannot comprehend or understand there is anything wrong with them: not dementia, memory loss, cognitive impairment, none of it. This also extends to other issues, such as a cold or a broken bone or blood pressure or what have you. For a normal brain, it's an incredibly difficult concept to grasp. I've been there with my mother and now with my aunt and it's hard and I'm sorry.
No amount of explaining, logic, discussion, and reasoning will help. Their damaged brain cannot do reasoned thinking any longer, or not consistentl (there are exceptions for some types of dementia that present differently). If there is memory impairment as well, it makes everything more difficult.
My mother was prone to anxiety and agitation, so nothing about dementia or her limitations was ever discussed with her or in her presence, to the best of my ability, once I had a diagnosis and learned about the disease and what would work with her. Instead, we used a lot of reassurance and distraction/deflection for potentially upsetting topics (wanting to go home, money, paranoid delusions) and agreement and then distraction/deflection for topics that didn't matter and weren't emotional (delusions without paranoia, wanting to buy a car, wanting to go on a trip).
Nothing about this is easy and I am sorry.
The brain damage from the disease, means that the person with dementia cannot comprehend or understand there is anything wrong with them: not dementia, memory loss, cognitive impairment, none of it. This also extends to other issues, such as a cold or a broken bone or blood pressure or what have you. For a normal brain, it's an incredibly difficult concept to grasp. I've been there with my mother and now with my aunt and it's hard and I'm sorry.
No amount of explaining, logic, discussion, and reasoning will help. Their damaged brain cannot do reasoned thinking any longer, or not consistentl (there are exceptions for some types of dementia that present differently). If there is memory impairment as well, it makes everything more difficult.
My mother was prone to anxiety and agitation, so nothing about dementia or her limitations was ever discussed with her or in her presence, to the best of my ability, once I had a diagnosis and learned about the disease and what would work with her. Instead, we used a lot of reassurance and distraction/deflection for potentially upsetting topics (wanting to go home, money, paranoid delusions) and agreement and then distraction/deflection for topics that didn't matter and weren't emotional (delusions without paranoia, wanting to buy a car, wanting to go on a trip).
Nothing about this is easy and I am sorry.
When my husband was diagnosed with dementia I was fortunate enough that he was at a stage to accept it and to discuss and make plans for the future (Will and POAs).
At no point did I go into detail as to what might come. He knew he would not reach a great age and he knew that his memory would be affected - but that was as far as it went. As far as I was concerned, the nitty gritty of all that dementia might entail was for me to be aware of and prepare for, not him.
For the most part (and I won't deny that there were some major challenges thrown in along the way) my husband led an enjoyable life. He would not have had as much peace and contentment as he did had I shared what I knew. In time he would have forgotten what I said, but the feeling of unease and worry would have lingered on and made his days more difficult - even if he could no longer recall why.
Your MIL is happy and that is a blessing. I would be guided by your husband's wish not to distress her needlessly.
Do keep posting, we are all here for you
At no point did I go into detail as to what might come. He knew he would not reach a great age and he knew that his memory would be affected - but that was as far as it went. As far as I was concerned, the nitty gritty of all that dementia might entail was for me to be aware of and prepare for, not him.
For the most part (and I won't deny that there were some major challenges thrown in along the way) my husband led an enjoyable life. He would not have had as much peace and contentment as he did had I shared what I knew. In time he would have forgotten what I said, but the feeling of unease and worry would have lingered on and made his days more difficult - even if he could no longer recall why.
Your MIL is happy and that is a blessing. I would be guided by your husband's wish not to distress her needlessly.
Do keep posting, we are all here for you
Thank you for your replies. It's so difficult to know what's for the best. I feel happier now hearing your thoughts. I'm a 'get it all out into the open' kind of person and my husband is not particularly but now I understand the effects of the disease I can see its not appropriate here. I have no experience of dementia at all so I can't offer any useful support but I suspect its going to be a steep learning curve so hopefully I might be of more use soon!
If she doesn't ask don't bring it up or discuss. My dad probably realised something wasn't quite right in the earlier stages and declined quite quickly before a diagnosis by which time he lost understanding of quite a bit...however he never asked and we never discussed just learnt quickly about the illness and how we could best help him. If you browse through the factsheets in this site there is a lot of useful information about the illness, symptons, effects with tips and advice such as compassionate communication.
Hello @lindz, welcome to TP from me too.
The Factsheets have been mentioned to you and in case you haven't found them yet, here's a link to the full Publications List https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list
The Factsheets have been mentioned to you and in case you haven't found them yet, here's a link to the full Publications List https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list
Every case of Alzheimer's will be different, as each individual is different. But once that mind-set is in place, i.e. denial and genuine belief that all is well, it is prudent to adhere to the state of that presentation, because to apply logic or let us say 'fact', can be detrimental. At this moment I am in regular contact with someone who is living with Alzheimer's (in a Care Home) and who is aware of the disease. I am able to gently 'guide' this person back into a state of reality, or the here and now and we can talk quite comfortably in that regard. But once the person has entered that stage where 'reality' for them is removed from the here and now, then one needs to be aware and careful. It is much the same as when one tells Mrs X, that her husband died ten years ago, when she has just asked when will he be coming to see her again? That can be genuinely traumatic for the one concerned, as they virtually re-live a bereavement as if it had just taken place. And one cannot argue with dementia, ever. Caring for someone with dementia remains a huge challenge at all levels. We strive to offer comfort, beyond which stands an unknown region.
Dementia is complex. But if one might imagine coming home and entering the house one has lived in for most of one's life, only to discover the rooms are now completely changed, the furniture quite different, the familiar possessions no longer present. And your family tell you that all is as it should be and nothing has changed - then you approach the 'feeling' that dementia evokes. So any persuasion, insistence, or conviction in terms of 'fact', has no meaning. Your 'reality' is yours and yours alone. The house IS different and unfamiliar for you and that is a fact, despite anything that is said to convince you otherwise. And even that analogy only adds some perspective to this whole question of cognition in dementia world and not a definitive answer -- as there is not one.
Hi
My mother was in a similar position, she was very confused but basically extremely happy with life. She was assessed and diagnosed with Vascular Dementia, but never really understood so we didn't tell her and just tried to cope with the problems as they came along. I think in these situations you have to do whatever your instincts tell you to. There is no right or wrong xx
Hi @lindz
My Mum has always been one of life's worriers and has suffered with depression etc. When she was diagnosed with Vascular Dementia her GP and I both agreed that if she was told it would affect her severely. I managed to keep it from her although she was very much aware that something was not right. It was a bit like the 'elephant in the room' it was there but we didn't comment. I think that was right for Mum - as far as she was concerned, if it wasn't out in the open, it wasn't there.
When she questioned her failing memory one psychiatrist kindly explained that just like some people lose their hearing or have other physical problems as they age, in Mum's case it was her memory that was getting old and wearing out. I have used that explanation to her on several occasions.
Not telling Mum was right for us, it was on all her notes - but you have to be constantly 'on guard' (for medical staff in particular) blurting it out until the PWD is no longer aware.
X
My Mum has always been one of life's worriers and has suffered with depression etc. When she was diagnosed with Vascular Dementia her GP and I both agreed that if she was told it would affect her severely. I managed to keep it from her although she was very much aware that something was not right. It was a bit like the 'elephant in the room' it was there but we didn't comment. I think that was right for Mum - as far as she was concerned, if it wasn't out in the open, it wasn't there.
When she questioned her failing memory one psychiatrist kindly explained that just like some people lose their hearing or have other physical problems as they age, in Mum's case it was her memory that was getting old and wearing out. I have used that explanation to her on several occasions.
Not telling Mum was right for us, it was on all her notes - but you have to be constantly 'on guard' (for medical staff in particular) blurting it out until the PWD is no longer aware.
X
Thank you all so much. I feel a bit humbled now as I think I was trampling around like an elephant without being aware of the complexities of everything. I have found it very difficult to try and understand what exactly is going on and how it affects my MIL as I suppose it seems to have come on so quickly. She must have had it for years bubbling away and that makes me feel so guilty. Anyway, I feel a lot better now so thank you. I can carry on without angsting over whether we should be trying to make her understand what's going on (because of course, we can't). I'm in charge this morning as my husband is out playing in a tennis match. We've just finished a crossword which she really enjoyed despite not being able to get any of the clues and I've given her lunch because she is always hungry and thought she had had breakfast hours and hours ago. We've had lots of laughs as well over silly things and I'm much more relaxed thanks to this forum )
)
