Mum has dementia, in denial. Will not discuss or speak to doctor. HELP!

[MERMAID1]

Hi everyone, I'm new to this but hope maybe someone can advise me as I'm (along with the rest of the family) at wits end! My mum has had dementia for the last 3 years, but is in complete denial. I think she is scared as she cared for both her parents who had dementia so she knows what's coming. I managed to tag along to a doctors appointment 2 years ago and flagged up her memory problems. The doctor did a quick memory test, which she struggled to do, and then said she would book an appointment at the memory clinic. The letter was "lost"/my mum binned it- so it never happened. This has happened again recently. After the appointment my mum refused to speak to me for several weeks. Things are deteriorating in terms of remembering appointments, eating properly (has lost a lot of weight), becoming aggressive with my dad, no interest in anything. She hardly drives anywhere now, but last week she did and forgot how to drive. She suddenly couldn't get the car in any gear, but blamed the car. All the family are really worried and we have all tried different approaches, but she either gets really upset and says her life is over, or denies there is a problem. Without a diagnosis, we cant get help/support. My sister has asked my mum if she can help out with medical appointments, but my mum says there is no problem and she wont sign anything which will allow access to her medical records. What do can you do if someone refuses to acknowledge there is a problem, so you don't ever get a diagnosis.??? Thanks for reading.

 

[Dee M]

Hi everyone, I'm new to this but hope maybe someone can advise me as I'm (along with the rest of the family) at wits end! My mum has had dementia for the last 3 years, but is in complete denial. I think she is scared as she cared for both her parents who had dementia so she knows what's coming. I managed to tag along to a doctors appointment 2 years ago and flagged up her memory problems. The doctor did a quick memory test, which she struggled to do, and then said she would book an appointment at the memory clinic. The letter was "lost"/my mum binned it- so it never happened. This has happened again recently. After the appointment my mum refused to speak to me for several weeks. Things are deteriorating in terms of remembering appointments, eating properly (has lost a lot of weight), becoming aggressive with my dad, no interest in anything. She hardly drives anywhere now, but last week she did and forgot how to drive. She suddenly couldn't get the car in any gear, but blamed the car. All the family are really worried and we have all tried different approaches, but she either gets really upset and says her life is over, or denies there is a problem. Without a diagnosis, we cant get help/support. My sister has asked my mum if she can help out with medical appointments, but my mum says there is no problem and she wont sign anything which will allow access to her medical records. What do can you do if someone refuses to acknowledge there is a problem, so you don't ever get a diagnosis.??? Thanks for reading.

Hi Mermaid,
Firstly, welcome. You will find a lot of helpful advice and support here. So sorry to hear about your battle trying to obtain a diagnosis for your mum. I too had a similar experience nearly two years ago, when my family and I noticed changes with our mum. She lived alone at the time and would not acknowledge the problems, which included avoiding the GP, so we could obtain support and direction for medical care. After some battles with our mum, fate stepped in. Mum had several falls whilst at home, which gave us the opportunity for us to action her care, with her reluctantly agreeing! The GP was wonderful and sympathised with us all. After carrying out a cognitive test in the GP surgery, which mum failed on most questions, he gently suggested to mum to have a head scan, blood test, etc., to check that she had not incurred any injury to her head, following her falls (as mum could not remember if she had knocked her head). The doctor advised mum and us that he had concerns with mum's memory, and she retorted: "what do you expect, I am in my 80s!!" As a family we strongly suspected dementia for some time. Following hospital scans, and a follow-up with the local Hospital Trust, we had a home visit from an assessor, who carried out more extensive cognitive tests. After a few weeks, we officially had confirmation that mum has Alzheimer's. We were all devastated. Mum was scared, as she had watched her best friend pass away from the condition several years before. We sat down with her as a family and comforted her as best we could. Mum and us were given some useful contacts for the Memory Service team, which we have found very useful. The Alzheimer's Society had sent mum and us some useful information about coping with the condition and we have some helpline numbers. Mum moved in with my sister shortly after her falls, and I became her main carer, with my sister assisting as second in command. We are lucky, as we have a large, supportive family. It sounds as if your family are supportive too. My mum does not trust many people so, at this stage, it is just us as a family looking after mum. We are aware of the development stages ahead, which will mean changes for the future. However, we do try and take it on a day-by-day basis. Mum does have episodes of total confusion, which we have learnt to call "disorientation" - and she is afraid during these moments, but we are always honest with her, and advise her that she has Alzheimer's, but that the medication is helping slow down development.
Going back to your situation, I think you should gently explain to your mum that you are worried about her memory loss and have concerns about her quality of life. I believe that being honest is always the best policy. Let your mum know that you are very worried as a family and to reassure you all, it would help if she just saw her GP to be checked for any underlying medical issues. Perhaps you can write a letter to the GP giving your concerns and highlighting the problems you are experiencing in trying to get your mum to appointments. The GP may be able to coax your mum to go forward with this. If you require a different approach, and for additional advice on the best way forward, call DIMENTIA CONNECT SUPPORT on: 0333 150 3456 - very helpful support and advice for you and your mum.
I hope this helps you. Lots of luck with it. I know how hard it can be!

 

[northumbrian_k]

Hi @MERMAID1 and welcome to Dementia Talking Point our supportive and friendly community. I am sorry to hear about your mum but not surprised that she denies anything is wrong. This is very common. You don't necessarily need a diagnosis in order to get the support that is needed but it would certainly help in planning for her future care. What @Dee M has suggested might be one way to get her to the GP and the memory clinic. It may take some subterfuge.

I am guessing that no-one has Lasting Power of Attorney. It would be a good idea to set this up - for both finance & property and health & welfare - whilst she still has capacity. She may be resistant if approached directly but less so if you can get your dad to announce that he is settling up Power of Attorney for himself 'just in case'.

If she is not already known to social services, asking for an adult needs assessment on her behalf might be a good idea. This would probably involve a visit by a social worker so would need some careful handling. You might also need to deal with any backlash.

None of this is easy, but is likely to be necessary on the assumption that dementia is in fact the cause of what you have observed and described above. It may be that what your mum thinks and what she wants is now less important than what she needs.

Below are some links that may be helpful. Come back here with any questions and we will try to help as much as possible.

Assessment for care and support in England

What are care assessments and how can people with dementia and their carers access them? This information is for care and support in England.

www.alzheimers.org.uk

Lasting power of attorney for people with dementia

A Lasting power of attorney (LPA) is a legal tool that lets you choose someone you trust to make decisions for you. There are two different types of LPA: property and affairs LPA and health and welfare LPA. LPAs can make things easier for you and the people you are close to as your dementia...

www.alzheimers.org.uk