My mum is refusing to talk or get a diagnosis

Alma1992

New member
Oct 28, 2023
1
0
My mum has been noticeably struggling with short term memory, difficulty finding words, what we think could be depression (for a long time) undiagnosed, general loss of doing everyday admin, has almost stopped driving altogether, reliant on our dad for everything yet still functions day to day and has many normal conversations etc. She is already a closed book in terms of her own feelings and we are at a stage where we want a diagnosis or for her to at least speak with a specialist but she gets very upset, angry, histerical and completely against seeking help. She had told my dad she doesn't want people asking how she is or talking behind her back. She doesn't seem to think she needs help. She seems very scared. It's been years of us stepping on eggshells trying to find a gentle way to encourage her but it isn't working so far. It's the elephant in the room. We are nervous it could be treatable like long covid or severe depression or a brain tumour even which could maybe result in similar symptoms to dementia but are all treatable. What if we don't do more. What can we do. We can't force her. Help!
 

Grannie G

Volunteer Moderator
Apr 3, 2006
82,698
0
Kent
Hello @Alma1992 Welcome.

Do you have any time alone with your dad? If so, ask him what he wants you to do to help.

It`s best not to talk to your mother about this. Many people with dementia or worrying they may have dementia are too frightened to face what they think is the truth and are probably completely closed to the idea it might not be dementia but something treatable.

You or your dad could take advice from your parents' doctor. They will listen even if they are unable to discuss.

You could also phone the helpline.

Dementia support​

Call: 0333 150 3456
If you are affected by dementia, worried about a diagnosis or a carer, trained staff are ready to give you the support you need.

Opening hours: Mon to Weds: 9am – 8pm, Thurs and Fri: 9am – 5pm, Sat and Sun: 10am – 4pm
 

sue31

Registered User
Oct 2, 2023
204
0
Medway
My mum has been noticeably struggling with short term memory, difficulty finding words, what we think could be depression (for a long time) undiagnosed, general loss of doing everyday admin, has almost stopped driving altogether, reliant on our dad for everything yet still functions day to day and has many normal conversations etc. She is already a closed book in terms of her own feelings and we are at a stage where we want a diagnosis or for her to at least speak with a specialist but she gets very upset, angry, histerical and completely against seeking help. She had told my dad she doesn't want people asking how she is or talking behind her back. She doesn't seem to think she needs help. She seems very scared. It's been years of us stepping on eggshells trying to find a gentle way to encourage her but it isn't working so far. It's the elephant in the room. We are nervous it could be treatable like long covid or severe depression or a brain tumour even which could maybe result in similar symptoms to dementia but are all treatable. What if we don't do more. What can we do. We can't force her. Help!
Snap!
Only mum is on her own, dad died in 2016.
Her GP was & is absolutely useless! Tried explaining mum won’t leave the house anymore as she believes she will be carted off to a home.
I started the ball rolling by calling Admiral Nurses, they were really good at pointing me in the right direction, giving me the local offices of the dementia organisations etc. Finally got to have her seen in her own home by the people needed to do a diagnosis.
Now jumping through the mental health, social care & crisis team hoops. A best interests meeting is scheduled for next week so will see what that throws up.
It’s a horrible situation for her and us, we want her safe & comfortable - she wants to just be left alone as there’s nothing wrong.
Much as I’d love to run away from it all like her son (my brother) I just can’t turn my back.
We don’t have a power of attorney for health and we can’t force her to accept any medical help as she refuses
The woman she is now is not my mum & I feel useless & guilty for beginning to feel resentment towards the defiant, self neglecting person she is now.
As soon as you get the diagnosis you can apply for the attendance allowance (not means tested) on her behalf plus apply for a reduction in their council tax. I only found this out last week!
 

Selene

New member
Nov 1, 2023
3
0
Snap!
Only mum is on her own, dad died in 2016.
Her GP was & is absolutely useless! Tried explaining mum won’t leave the house anymore as she believes she will be carted off to a home.
I started the ball rolling by calling Admiral Nurses, they were really good at pointing me in the right direction, giving me the local offices of the dementia organisations etc. Finally got to have her seen in her own home by the people needed to do a diagnosis.
Now jumping through the mental health, social care & crisis team hoops. A best interests meeting is scheduled for next week so will see what that throws up.
It’s a horrible situation for her and us, we want her safe & comfortable - she wants to just be left alone as there’s nothing wrong.
Much as I’d love to run away from it all like her son (my brother) I just can’t turn my back.
We don’t have a power of attorney for health and we can’t force her to accept any medical help as she refuses
The woman she is now is not my mum & I feel useless & guilty for beginning to feel resentment towards the defiant, self neglecting person she is now.
As soon as you get the diagnosis you can apply for the attendance allowance (not means tested) on her behalf plus apply for a reduction in their council tax. I only found this out last week!
I am in the same situation with my mum. She is extremely paranoid and masking her symptoms very well. I have a few videos of her verbally abusing me in her house and I was on the phone to my friend who heard the sounds of my mum hitting me and threatening to pull a knife from the kitchen drawer. I also do not have POA. Just sent an email to her GP today expressing my concerns about this and her physical decline. I also need a diagnosis. I know for absolute fact she will not do this willingly. What ended up happening in your situation.
 

Mumlikesflowers

Registered User
Aug 13, 2020
220
0
I remember all the impossibilities that people have described. My experience is that time provides some momentum and some solutions eventually. I always said that going into a care home would kill Mum but I was basing that on my experience of Mum then not Mum on a medication that makes things better not worse and Mum who accepts that she is old and needs help. The other thing I'd link to time, momentum and solutions is that you keep trying things out, for instance how on earth to phrase things or to present concepts. What's the phrase that's least likely to trigger a meltdown? What's the wording that you can face using? It can be a very daunting prospect but all the time, you are learning, learning what works and what doesn't, becoming an expert in your Person with Dementia. I'm quite pessimistic by nature but sometimes things have gone a lot better than I expected or maybe it's rather that you stick with it and stick with it, wondering how it could ever get better, and then something shifts. This journey and story is not a foregone conclusion.
 

sue31

Registered User
Oct 2, 2023
204
0
Medway
I am in the same situation with my mum. She is extremely paranoid and masking her symptoms very well. I have a few videos of her verbally abusing me in her house and I was on the phone to my friend who heard the sounds of my mum hitting me and threatening to pull a knife from the kitchen drawer. I also do not have POA. Just sent an email to her GP today expressing my concerns about this and her physical decline. I also need a diagnosis. I know for absolute fact she will not do this willingly. What ended up happening in your situation.
We have a ‘best interests’ meeting next week. That’s 9 weeks to get to this point! I’m not holding my breath on a good out come as not one of the ‘team’ assigned to her case have communicated with each other let alone me.

Could be just the area we are in but it has been more stressful dealing with them than my mother. So will see what next brings but I will be calling them all out on their poor management.

Have you contacted Admiral nurses? They will get your local branch to contact you if you fill in the online form. They will also get your mum referred to mental health/social worker/dementia crisis and that will get the ball rolling in getting a diagnosis. The more information you can give them before hand is a help. My mother is very convincing still on some things - had they not been bought up to speed before hand I think they may of said “she’s ok” I made it very clear not to contact mum as she would not engage or agree to appointments. Once they got the full picture they just turned up at the house. Mum thought they were just visitors & people doing health checks on over 80’s. Didn’t like the lying to her but it had to be done.
Fortunately mine isn’t physically violent but the venom in her verbal attacks is unbelievable. Latest ‘episode’ she said she was going to call the police & get me taken away……. Gave her the phone told her to do it & said I’d sit down to wait for them , surprisingly she flipped back to being her slightly calmer self & looked very confused.

Please do get in contact with Admiral, not just for her but you need help coping too.
 

Felinefan66

Registered User
Oct 5, 2023
45
0
Snap!
Only mum is on her own, dad died in 2016.
Her GP was & is absolutely useless! Tried explaining mum won’t leave the house anymore as she believes she will be carted off to a home.
I started the ball rolling by calling Admiral Nurses, they were really good at pointing me in the right direction, giving me the local offices of the dementia organisations etc. Finally got to have her seen in her own home by the people needed to do a diagnosis.
Now jumping through the mental health, social care & crisis team hoops. A best interests meeting is scheduled for next week so will see what that throws up.
It’s a horrible situation for her and us, we want her safe & comfortable - she wants to just be left alone as there’s nothing wrong.
Much as I’d love to run away from it all like her son (my brother) I just can’t turn my back.
We don’t have a power of attorney for health and we can’t force her to accept any medical help as she refuses
The woman she is now is not my mum & I feel useless & guilty for beginning to feel resentment towards the defiant, self neglecting person she is now.
As soon as you get the diagnosis you can apply for the attendance allowance (not means tested) on her behalf plus apply for a reduction in their council tax. I only found this out last week!
Oh I feel I'm in the same predicament as you, except with my father. He absolutely refuses to accept there's anything wrong and I am slowly seeing some other man replace my Dad and I don't like this new Dad! I too would love to run away from it all because I just don't know how to help him when he is in denial, non compliant and refusing any discussion or help. I also don't have PoA and fear it already may be too late. My father recently said, rather angrily also, that he does not want any one coming to the house either (I was referring to him seeing a chiropodist). I am sure he's terrified that someone will come along and take him away.
 

sue31

Registered User
Oct 2, 2023
204
0
Medway
Oh I feel I'm in the same predicament as you, except with my father. He absolutely refuses to accept there's anything wrong and I am slowly seeing some other man replace my Dad and I don't like this new Dad! I too would love to run away from it all because I just don't know how to help him when he is in denial, non compliant and refusing any discussion or help. I also don't have PoA and fear it already may be too late. My father recently said, rather angrily also, that he does not want any one coming to the house either (I was referring to him seeing a chiropodist). I am sure he's terrified that someone will come along and take him away.
Sadly that’s what it came to with mum, ambulance eventually took her.
She’s refused everything & all help offered, the house is minging, she’s like a tramp, nails on feet & hands nearly a inch long, this is not mum anymore, she so verbally spiteful & I’d love to disown her but I just can’t, my conscience won’t let me.
Visiting her in hospital is traumatic, begging to go home, blaming us that she is being tortured in there, really angry too. Complete denial on every aspect.
We’ve had carers, for over 2 years, she won’t comply so no care package will work - no matter what the hospital etc say I’m refusing one, she has no mental capacity at all. .
She won’t be going back home - much as I’d love her to, we’d just be going back down the same road.
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
6,993
0
@Felinefan66 and @sue31 i am so sorry to read about the problems that you are both having with your parents. It must be so difficult for you. I cannot really offer you any advice except to remember to look after yourselves during these difficult times.
 

Felinefan66

Registered User
Oct 5, 2023
45
0
Sadly that’s what it came to with mum, ambulance eventually took her.
She’s refused everything & all help offered, the house is minging, she’s like a tramp, nails on feet & hands nearly a inch long, this is not mum anymore, she so verbally spiteful & I’d love to disown her but I just can’t, my conscience won’t let me.
Visiting her in hospital is traumatic, begging to go home, blaming us that she is being tortured in there, really angry too. Complete denial on every aspect.
We’ve had carers, for over 2 years, she won’t comply so no care package will work - no matter what the hospital etc say I’m refusing one, she has no mental capacity at all. .
She won’t be going back home - much as I’d love her to, we’d just be going back down the same road.
Sue.. what happened that needed an ambulance?

Dad's house is tidy, though it could probably do with a clean.. but everything is in its place and he always washes up and puts away. I did notice his toenails were about an 1.5 inches long as he has difficulting with hip mobility to cut them. I tried but oh my god, they were too thick. I mentioned getting a chiropodist in to cut them but he has angrily refused anyone going to the house. I will try myself again, this time soaking them in water first. I just want to escape but of course how can I .. he's my Dad, but I don't want to do this.. it's always such a battle with him and I know it's awful to say but his constant denial about his mental health just makes me so angry because if only he wasn't so bloody proud and stubborn, he might actually be able to get some help! I am going to spend 6 days with him tomorrow (we live 5 hours away) and I am dreading it.. he's looking forward to the company - he is in his own world, looking forward to some of his daughter's home cooked food, but I am really quite depressed thinking about it. I know as soon as I see him he'll be in the same clothes we always see him in so immediately that triggers me.. 'How long has he worn those clothes for... has he even washed them.. or has it been weeks, or months?' OMG!!! And it goes on like this. It's giving me anxiety and high blood pressure and we haven't really started along this road because there's no diagnosis (of course he won't go to see his GP.. I think he's terrified).
 

sue31

Registered User
Oct 2, 2023
204
0
Medway
Sue.. what happened that needed an ambulance?

Dad's house is tidy, though it could probably do with a clean.. but everything is in its place and he always washes up and puts away. I did notice his toenails were about an 1.5 inches long as he has difficulting with hip mobility to cut them. I tried but oh my god, they were too thick. I mentioned getting a chiropodist in to cut them but he has angrily refused anyone going to the house. I will try myself again, this time soaking them in water first. I just want to escape but of course how can I .. he's my Dad, but I don't want to do this.. it's always such a battle with him and I know it's awful to say but his constant denial about his mental health just makes me so angry because if only he wasn't so bloody proud and stubborn, he might actually be able to get some help! I am going to spend 6 days with him tomorrow (we live 5 hours away) and I am dreading it.. he's looking forward to the company - he is in his own world, looking forward to some of his daughter's home cooked food, but I am really quite depressed thinking about it. I know as soon as I see him he'll be in the same clothes we always see him in so immediately that triggers me.. 'How long has he worn those clothes for... has he even washed them.. or has it been weeks, or months?' OMG!!! And it goes on like this. It's giving me anxiety and high blood pressure and we haven't really started along this road because there's no diagnosis (of course he won't go to see his GP.. I think he's terrified).

They were there about 2 hours & eventually tricked her onto a wheeled bed & out the house. She was very confused and resisted but they were really good.
No injuries from the fall, luckily, but it’s taken this to happen to get taken seriously. She was so damn good & convincing to SS when the did a safeguarding assessment.
So 6 days on and she’s in a ward playing merry hell but they are finally seeing what state she’s in & the help she needs. She couldn’t keep the act up past 2or 3 hours.
She can’t live alone anymore due to lack of capacity and was refusing help from the carers we already had. It’s been hard and I feel like a monster doing this to her even though I know it’s the right road. I think you right that he knows somethings not right. Same with my mother. Which then fuels their determination & resistance to any help.
It’s so frustrating as no reasoning works.
Many of us on here seem to have similar situations so it’s good to know we are not the only ones struggling with the sufferer and the stress of trying to cope.
 
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sue31

Registered User
Oct 2, 2023
204
0
Medway
I think you right that he knows somethings not right. Same with my mother. Which then fuels their determination & resistance to any help.
It’s so frustrating as no reasoning works.
Many of us on here seem to have similar situations so it’s good to know we are not the only ones struggling with the sufferer and the stress of trying to cope.
 

Pebblepebble

Registered User
May 29, 2022
48
0
This is my Mum. House it a mess and she won't let my Dad throw anything out. Her teeth are a disgrace but she has decided she is petrified of the dentist, for heavens sakes her teeth in her top dentures are falling out and she won't get that sorted. She did have a home visit from someone about her memory over a year ago and was supposed to have a brain scan but never got any further. However I suspect she either forgot an appointment or threw the letter away. She has been functioning OK for the last three half years since we first noticed this but has deteriorated so Dad is now going shopping with her as she is forgetting things and running out of food etc. She is frustrating to be with and my Dad isn't blessed with much patience. I wish she would get a diagnosis (if nothing else they are struggling with money) but she is stubborn. I try to take her out to shows as she loves 50's and 60's music but there is a limit to that and she has no interest in much else. I am so worried about her and also about the fact we might end up disliking the person she will become. Although 85 she is in good health and has hardly been to the doctor over the years. If anyone has any suggestions I'm sure we would all be interested. Sadly we can't force her to do anything.
 

try again

Registered User
Jun 21, 2018
1,308
0
. I tried but oh my god, they were too thick. I mentioned getting a chiropodist in to cut them but he has angrily refused anyone going to the house. I will try m clothes we always see him in so immediately that triggers me.. 'How long has he worn those clothes for... has he even washed them.. or has it been weeks, or months?' OMG!!! And it goes on like this. It's giving me anxiety and high blood pressure and we haven't really started along this road because there's no diagnosis (of course he won't go to see his GP.. I think he's terrified).
Can he go out? I guess if his nails are that long the answer is no Would he be accepting of you both going to have your feet seen to? Or a promise of a pub meal . Chiropodist comes for you and he's just offered it

As far as clothes, would he change them if you tripped up and spilt a glass of milk over him? Though if he won't bath, don't suppose clothes will help much. Would he for the promise of a pint or two?
There's a game in trying to manage a PWD, can't say I ever excelled.
 

MargoW

New member
Oct 25, 2023
3
0
Walsall, UK
My mum has been noticeably struggling with short term memory, difficulty finding words, what we think could be depression (for a long time) undiagnosed, general loss of doing everyday admin, has almost stopped driving altogether, reliant on our dad for everything yet still functions day to day and has many normal conversations etc. She is already a closed book in terms of her own feelings and we are at a stage where we want a diagnosis or for her to at least speak with a specialist but she gets very upset, angry, histerical and completely against seeking help. She had told my dad she doesn't want people asking how she is or talking behind her back. She doesn't seem to think she needs help. She seems very scared. It's been years of us stepping on eggshells trying to find a gentle way to encourage her but it isn't working so far. It's the elephant in the room. We are nervous it could be treatable like long covid or severe depression or a brain tumour even which could maybe result in similar symptoms to dementia but are all treatable. What if we don't do more. What can we do. We can't force her. Help!
I suggest, if possible, respect your mom's wishes. I am 82 and was concerned about my forgetting things so I told my GP. This led to a video visit to the memory clinic. They arranged an brain MRI for me.
I am still in shock and trying to do brain games like sudoku etc. Why not the encourage your mom to do jigsaws, recommended by the memory clinic to improve memory , also brain games. To get a diagnosis of dementia is a terrible shock, I wish I had never had the diagnosis. My dementia is both Alzheimer's and Vascular.
Please let me know how you get on, as far as I know (and I have done hours and hours of research) science is working full steam ahead to find a cure for Alzheimers. Dr Dale Bredeson, an American and the researcher into Alzheimers is well worth watching on YouTube. Í sincerely wish your mom will benefit from your research.
A truly happy Christmas with your family.
 

sue31

Registered User
Oct 2, 2023
204
0
Medway
This is my Mum. House it a mess and she won't let my Dad throw anything out. Her teeth are a disgrace but she has decided she is petrified of the dentist, for heavens sakes her teeth in her top dentures are falling out and she won't get that sorted. She did have a home visit from someone about her memory over a year ago and was supposed to have a brain scan but never got any further. However I suspect she either forgot an appointment or threw the letter away. She has been functioning OK for the last three half years since we first noticed this but has deteriorated so Dad is now going shopping with her as she is forgetting things and running out of food etc. She is frustrating to be with and my Dad isn't blessed with much patience. I wish she would get a diagnosis (if nothing else they are struggling with money) but she is stubborn. I try to take her out to shows as she loves 50's and 60's music but there is a limit to that and she has no interest in much else. I am so worried about her and also about the fact we might end up disliking the person she will become. Although 85 she is in good health and has hardly been to the doctor over the years. If anyone has any suggestions I'm sure we would all be interested. Sadly we can't force her to do anything.
It’s so hard when all help is resisted.
Took the fall for us to actually get anywhere with doctors & me flipping out to mental capacity team there,
I know it’s the best place for her but she is absolutely raging she’s not allowed home blames us for putting her in there saying she would never do it to anyone, er are cruel & has cursed us, with the added promise of haunting if anything happens to her there.
Finally she is showing others all the things we have had to cope with for over 2 years, little comfort tho.
She won’t be going home, much as we would love her to it will not solve the many issues faced.
 

chickenlady

Registered User
Feb 28, 2016
123
0
Mum's GP wasn't great and it took months to get her referred to memory clinic, we then had to pretend we were taking her for an annual check up that they do on everyone once they get to a certain age. The diagnosis helped with attendance allowance and council tax rebate but she has denied it and now forgotten it. We used the excuse that she was due a booster to get her to the GP in the first place. Some times you just need to lie.
 

Felinefan66

Registered User
Oct 5, 2023
45
0
Can he go out? I guess if his nails are that long the answer is no Would he be accepting of you both going to have your feet seen to? Or a promise of a pub meal . Chiropodist comes for you and he's just offered it

As far as clothes, would he change them if you tripped up and spilt a glass of milk over him? Though if he won't bath, don't suppose clothes will help much. Would he for the promise of a pint or two?
There's a game in trying to manage a PWD, can't say I ever excelled.
Yes, he goes out daily.. so far he doesn't seem to have his toenails coming out of shoes.. yet! When I was down for Christmas I did suggest again cutting his toenails (softening them first) but he refused as 'nothing wrong with them and I'm perfectly capable of cutting them myself' (same old story) and when I explained that he may suffer greater problems if he doesn't cut them I just got the usual, irritated, arrogant 'No I wont!' Oh.. he also said he had cut them... Hmm. I asked him how as when I tried before, they are so thick that normal nail clippers or (what I call.. dog nail clippers) won't cut them so strange how he managed to do it! To that I just got some hurumphs, huffs and puffs.. and a 'yeah yeah, whatever' .

I did manage to get him to change his clothes by insisting they were dirty (which they were). So that morning he put the boiler on for hot water and said he would have a shower. (This is going to be interesting, I thought, as the shower doesn't work so how is he going to do this - he insists he showers 2-3 times a week!) So when he went to get changed I reminded him 'You said you were going to shower..' and the response was.... he said that he would just have a quick wash instead. Hmmmmm. Anyway.. he at least put clean clothes on (not sure about underwear tho!). Nope can't persuade Dad.. he doesn't miss a trick! I am hopeless at persuading anyone let alone someone as obstinate and inflexible as Dad! Thanks for the suggestions however :)
 

Felinefan66

Registered User
Oct 5, 2023
45
0
This is my Mum. House it a mess and she won't let my Dad throw anything out. Her teeth are a disgrace but she has decided she is petrified of the dentist, for heavens sakes her teeth in her top dentures are falling out and she won't get that sorted. She did have a home visit from someone about her memory over a year ago and was supposed to have a brain scan but never got any further. However I suspect she either forgot an appointment or threw the letter away. She has been functioning OK for the last three half years since we first noticed this but has deteriorated so Dad is now going shopping with her as she is forgetting things and running out of food etc. She is frustrating to be with and my Dad isn't blessed with much patience. I wish she would get a diagnosis (if nothing else they are struggling with money) but she is stubborn. I try to take her out to shows as she loves 50's and 60's music but there is a limit to that and she has no interest in much else. I am so worried about her and also about the fact we might end up disliking the person she will become. Although 85 she is in good health and has hardly been to the doctor over the years. If anyone has any suggestions I'm sure we would all be interested. Sadly we can't force her to do anything.
I so feel for you... I understand as Dad is similar.. he refuses any help as in denial, even help from me is limited as there's 'nothing wrong with my memory' attitude but at Christmas I could see the deterioration. Dad was an avid classical music listener, a Beethoven fan, concert goer etc., but all that has gone.. so sad. He no longer listens to music. All he does is read.. at least he has that for now.. but my husband asks.. does he really read a book now from start to finish? We don't know. Dad is also in very good health, never sees his GP (really... never!) but I am now finding it exhausting and utterly frustrating.. I'm fed up of hearing his excuses, his avoidance to deal with things because of his confusion, his unwilingness to help himself.. his bloody stubborness. I know this is the disease but part of it is also Dad's personality (always has to be right, argue that black is white etc.) Like you, I can't force him to do anything.. he is mostly non-compliant with everything.