Advice on telling my Mum she has Alzheimer's

[Cheesecake4242]

My 87 year old Mum was diagnosed with Alzheimer's/MCI a couple of years ago. She has been fine and still lives independently in a sheltered flat, my Dad died 4 years ago. She gets her own shopping, puts ready meals in the microwave, does her own washing etc. She gets in a muddle with bills/appointments but can use a simple mobile phone and use her ipad. She was prescribed medication but refused to take pills as 'they made her very tired'.

Over the past few days she has been saying that her toaster, kettle, iron and coffee maker have been taken from her kitchen and replaced with different, sub-standard items. I said to her that people with memory issues may have these thoughts and that they are perfectly normal for someone of her age. She blames it on 'the Covid situation' and the lack of social interaction with the other residents of her sheltered accommodation complex. She is getting a urine test next week to rule out a UTI.

My Mum has always been interested in all things medical. She likes to read her medical dictionary and google any medication she has been given. I have a report from the Psychiatrist but Mum was not given a copy. Normally medical letters from the hospital to GP's are copied to the patient but obviously not for this kind of diagnosis. She is the kind of person that wants to know the ins and out of everything medical so I was wondering whether to give a copy of the report to her.

I had a tough time with MIL's dementia journey and am thinking it could be easier in the long run if I can discuss it with her openly and honestly.

 

[Woo2]

My mum was heavily involved in volunteering for The Red Cross and had a huge amount of medical knowledge as well as caring for many people with Dementia ....But it is completely different now , she cannot comprehend it at all , I wouldn’t tell her she has dementia as she can’t process it and it would upset her unnecessarily in my opinion . If you told your mum she would most likely forget it or else it may upset her keep reading report and going over it trying to comprehend what it means , completely up to you but I wouldn’t .

 

[margherita]

Hi @Cheesecake4242 ,
I never mentioned the word Alzheimer or dementia to my husband, but I used to say " memory issues". In my opinion there is no point in telling your mum the truth, but I would broach the subject of her memory issues to get her to sign an LPA if she hasn't already done it.

 

[karaokePete]

My opinion on this differs to many, if not most, people on the forum.

When my wife was first diagnosed she was just told the diagnosis in a very forthright manner by the Consultant. I understand that there is a theory that this gives an element of empowerment to the person. I took my lead from the Consultant and quite openly talk about dementia to my wife, without giving any details of the potential issues in the final stage. I know that people talk about a 'bad memory' but as dementia goes way beyond memory I feel that has limited value.

Over the last few years I have read many posts where people have difficulty getting their loved one to accept that there is anything wrong, or that help may be required, because the 'D' word has never been mentioned. I have actually found my openness to be useful when reassuring my wife when she gets confused or disoriented and I tell her not to worry as it's just her dementia, that everyone with dementia has days like that, and I'll always keep her right. My wife accepts what I say and seems happy to know that she is not alone in what she is experiencing and is reassured that I will 'keep her right'. Beyond that, my wife accepts any help offered to her.

When my wife started at her Day Centre she was happy there, saying "I'm glad I'm with people like me because I can't always understand what you are saying when you speak to me."

A good example relates to the issue that comes up time and again on the forum - driving. My wife wasn't happy about her licence not being renewed but accepted the possible safety issues around dementia and driving and quickly let the issue go.

I have never regretted adopting my attitude but acknowledge that many wouldn't agree with it.

 

[Lawson58]

My husband was told by the geriatrician that he had Alzheimer's and he understands why he sees this geriatrician every six months and why he has medication for the illness.

However, though he knows it and understands the need to be reviewed six monthly, he simply doesn't want to believe it. I would say that he actually chooses to pretend that this is not happening to him.

His mother had Alzheimer's and she was completely different to how he is, and she was so bad that he can't accept that he has the same/similar disease. In the seven years since his diagnosis, I think we have had four discussions about Alzheimer's as he has made that a no go area. The times we did discuss his illness were unsatisfactory for both of us, partly because he doesn't see himself as I see him.

It would be very nice to be able discuss this issue openly and honestly with him but how do you do that when belief isn't present. It is impossible to have a meeting of the minds when you're not in the same chapter, let alone on the same page.

 

[jennifer1967]

i thought i was wrong but i have been open with dementia from the time our gp said its dementia and probably vascular dementia, after my husband gave her permission to share information with me. i told him what it was and went with him to the memory clinic. stayed in the room while he had the test and answered questions about what i noticed different in front of him. i never wanted him not to trust me or think im keeping secrets from him. he says that he trusts me implicitly and now will ask about his illness to me. im open with him and also say that if he needs help, just to ask me and i will do it. i said he needs to be honest with his needs and that im willing[probably regret that bit] to do whatever needs doing. i dont over use the dementia word as i dont want to be forever pushing it down his throat. hes been getting quite nasty in the last few weeks which i will talk about and he can argue black is white in the last few weeks which is when i leave the subject and step back as you cant argue with dementia. sometimes you need to trust your instincts as to how to talk to him and when its better just to pull back and leave well alone.im trying to get a balance while i still can as i do know that that wont be possible as he progresses.

 

[Duggies-girl]

Dad was told three times to his face that he had dementia, once by the nurse and twice by the consultant and each time they asked him if he understood what that meant. Each time he said 'yes' that he understood and as soon as we or they were out of the door he told me that they didn't know what they were talking about and he was only as forgetful as any other person of his age.

I think it is different for everyone. In dads case he just decided that they were wrong (bearing in mind that each time he was told was the first time for him) and that he did not have dementia and once the idea is set, it is difficult to change it. I never mentioned it again, other than a slight memory problem.

Maybe tell her once and see if she retains the information or even accepts it, if she doesn't then there is probably no point in keep reminding her.

 

[karaokePete]

At the time my wife was diagnosed she didn't want to believe what she was told. At that stage she was still able to take on board the point I was making when I asked her to explain her behaviours etc if she felt nothing was wrong.

Don't get me wrong, I don't ram dementia down my wife's throat but I am open about it if she asks questions or expresses worries.

It may have helped that I have an assertive personality, whereas my wife has always been passive and so is accepting of what I say. It's somewhat ironic that this may be the case as before dementia reared it's ugly head I was always chiding my wife for being too passive and encouraging her to be more assertive.

Personality is such a deep reaching thing. Now that my wife cannot make new memory and is losing a lot of her earlier memory she is still able to hang on to the harmful emotions that stem from being bullied in her earlier life, but I digress.

 

[Bunpoots]

My dad fully accepted his diagnosis of mixed dementia in the early stages and went about, in his usual efficient way, sorting out his affairs - setting up direct debits for bills and insurance, making sure he had LPA and updating his will to his own satisfaction. 3 years later he had no idea that he had dementia and it only upset him if anyone suggested he had.

I’d say take your cue from your mum and use whatever excuse pops into your head to explain any weird belief or worry she may have. I used to tell my dad whatever kept him calm - usually he was fine if he thought I was dealing with everything.

We did go through a phase when he bought several replacement mobile phones as he thought his were faulty- he’d just forgotten how to use them in reality.

When my dad forgot how to make coffee I left him a flask which worked for a while. I’d leave sandwiches for him to have at lunch and fetch him to have dinner with my family in the evenings. It happened gradually and I’d never have been able to get dad to discuss his needs.

It might be time to consider getting in more help.

 

[Sarasa]

I agree to taking your cue from your mother @Cheesecake4242 . Mine flatly refused to believe that there was anything wrong with her. The GP tried to explain it by saying that just as your body wears out so does your brain. Mum was forever at the GPs complaining about her aches and pains so I thought that was a good approach, but I could see that mum didn't really understand what the doctor was trying to say.
If your mother is starting to think things have been changed in her flat watch out for her latching unto the idea that someone has deliberately done this. It could be you, or it could be a neighbour. My mother was convinced her neighbours had done lots of bizarre things to her including stealing her electricity and her false teeth. This caused her to either bang on their door screaming abuse or phoning the police. It was one of the reasons I moved mum to a care home.

 

[silkiest]

When my MIL was diagnosed with Alzheimers she accepted it and later decided to sell her car after she had forgotten where it was a few times. The acceptance lasted a couple of years. Now she flies into a rage if anybody dares to mention it and insists she is perfectly alright.
Mum was diagnosed less than a year ago, was very upset at the time but within weeks forgot all about the memory clinic visit. If I dare to mention memory problems she becomes annoyed. I happened to mention alzheimers on the phone to the district nurse who rang me from mums to clarify a medication. This resulted in shouting, swearing and mum not wanting me in the house. Mums hearing is usually poor, i'm flabbergasted that she could hear my conversation with the nurse.

 

[Lemondrizzle]

My MIL first raised that she was worried about her memory so we had no problem seeking help until the Consultant used the word dementia. This upset my MIL as she was from the generation where "demented" people were locked away and treated differently. After that we never used that word but just gently told her that her brain wasn't functioning as well as before, or whatever was appropriate at the time and stage we were at. We also pointed out that at her age (she lived to 93) she was bound to forget things. This approach worked for her and for us, keeping within her changing abilities but never using the word dementia again.

 

[Banjomansmate]

I was lucky that The Banjoman was diagnosed with LBD and Disease is sometimes used rather than Dementia so that’s what I always used. I cannot remember whether the Dr. at the Memory Clinic appointment said disease or dementia but we were certainly told what was wrong. When he was struggling sometimes I just said I was sorry that his brain wasn’t working quite right, not making the right connections. Sometimes he was aware of problems and sometimes not. One day when I was visiting him in residential care he offered to tune up my autoharp for me. As the ability to tune his 5 string banjo was one of the more noticeable things he lost there was no way he could manage the 20+ strings on my harp!

 

[Cheesecake4242]

Thank you for all your replies. As many of you have pointed out, I think maybe just speaking in general terms is probably the best approach such as saying ' your memory is not what it was'. This week it has been the items in the kitchen, it will be something else next week, no doubt! i have Finance POA, need to look at getting one for health.

 

[father ted]

All sound advice, similar to others my Mum was told bluntly by her consultant so there was no question of whether to tell her or not. I was annoyed about this as Mum had a long history of anxiety and depression and I thought this would all spiral out of control but it didn’t work out that way. Very rationally she accepted she had been diagnosed at an advanced age so was ‘lucky’.
If you tell your Mum she may simply not believe it or she may just accept it.
As time progresses her initial reaction may have little bearing on what you deal with later.

 

[Poppy333]

My 87 year old Mum was diagnosed with Alzheimer's/MCI a couple of years ago. She has been fine and still lives independently in a sheltered flat, my Dad died 4 years ago. She gets her own shopping, puts ready meals in the microwave, does her own washing etc. She gets in a muddle with bills/appointments but can use a simple mobile phone and use her ipad. She was prescribed medication but refused to take pills as 'they made her very tired'.

Over the past few days she has been saying that her toaster, kettle, iron and coffee maker have been taken from her kitchen and replaced with different, sub-standard items. I said to her that people with memory issues may have these thoughts and that they are perfectly normal for someone of her age. She blames it on 'the Covid situation' and the lack of social interaction with the other residents of her sheltered accommodation complex. She is getting a urine test next week to rule out a UTI.

My Mum has always been interested in all things medical. She likes to read her medical dictionary and google any medication she has been given. I have a report from the Psychiatrist but Mum was not given a copy. Normally medical letters from the hospital to GP's are copied to the patient but obviously not for this kind of diagnosis. She is the kind of person that wants to know the ins and out of everything medical so I was wondering whether to give a copy of the report to her.

I had a tough time with MIL's dementia journey and am thinking it could be easier in the long run if I can discuss it with her openly and honestly.

My mum in denial

 

[Poppy333]

She has lewy body dementia

 

[karaokePete]

Hello @Poppy333, 'denial', or , perhaps, more accurately a lack of ability to understand that there is anything wrong is common. If you have any questions just ask as the membership will assist you.

 

[NotSuperMan]

She has lewy body dementia

Hi Poppy333 and y*all on this link
We fetched Dad to live with us nov20
He has had blood tests/brain scan
Now being referred for memory test etc
Ive googled symptoms /read lots of posts on here etc
And I think I know what his Dementia is
Trouble is he has said a few times that he doesnt know whats wrong with him
He cant understand why sometimes hes ok and other times not
Hes 93 !!! I say its your age + our bodies start wearing out etc
I explain his night terrors/episodes as
Really bad nightmares
And I just emphasize to him that my hubby(his son) and me are just here to help with whatever we can
(It IS very difficult/stressful/tiring/upsetting)
We havent had an actual diagnosis from GP yet so we cannot say
Its because you have X - Y or Z
Tbh .... I think it would really upset him to be told Dementia
Yesterday he was obsessed with his sunglasses he has 2 pair
He is convinced our son has stolen a pair
(Clip on sunglasses!!!!) Crazy
Today hes obsessed with buying a couple of growbags to start growing seeds/flowers for the garden at his house (which he visits 1hour a week)
Thank goodness for catchup TV
Ive put *Gardeners World* on

Am I rambling on?
Thanks for listening

((Hugs)) for those who need one