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Feel like a rat for taking Mum to Memory Clinic

ganymede

Registered User
Apr 28, 2021
56
0
Hello, I'm new to the forum and feeling guilty.

We started being concerned about my mum about 4-5 years ago. 3 1/2 years ago begged her to go to the GP, and after she held out for 6 months, wrote to the GP outlining our concerns ... She was furious at what she saw as a betrayal, and was cool & withdrawn with me for at least a year. Over the next 2 years I didn't realise she was gradually withdrawing from others as well, as her communication skills declined. It was only when I stayed with my parents for a week last year after the first lockdown and saw their nighttime life that I cottoned on how bad things had got, and how much both Mum and Dad were masking to me and my sister.

Mum started ringing me after Christmas and saying things like "I'd really like it if you could visit so we could get to know one another" and "I've only just realised that I've been married to your Dad for the past ten years, I can only think it must be because my mother didn't tell me" [They've been married for 55 years and her mother died nearly forty years ago]. Despite the guilt, I was alarmed enough to ring her GP and trigger an appointment, and since he referred her to the Memory Clinic, I've been silently stagemanaging behind the scenes, confirming an appointment, and taking her there on Friday despite her saying she didn't want to go and didn't understand why she had to. The consultant gave us a diagnosis of moderate dementia with an assessment score of 45/100 [ACE-III?]. Mum didn't accept the diagnosis and was/is devastated both by the d-word and by the consultant telling her she mustn't drive any more.

My head knows that we couldn't have gone on without more help. Mum follows Dad everywhere, he can't even get ten minutes' peace to shave unless there's someone else there. I get calls during work hours with my parents at the end of their tether with each other, things have gone missing, they can't work the computer or the phone, Dad can't cope with Mum asking to go outside four times a day to check where the car is - etc. They live five hours away so it's impossible to pop by. I make regular long-weekend visits by train with time off work. Dad isn't in great health and the stress has been exhausting for him - I can see his relief that we now have a diagnosis, even though we both feel guilty, and very sad for Mum. Every time I make an intervention, I try to reassure Mum it's about supporting her to keep her independence. But I feel so duplicitous - I let Mum forget the appointment existed, walked her in there without her having an understanding of what was going on, and I know that if I'd really told her what it was about and allowed her to make the decision herself, she would never have put herself through this.

I do have an LPA H&W, so my head knows that the old Mum wanted me to be able to make the right decision for her ... I just see the frightened and tearful Mum who doesn't want to know this is happening to her just like it happened to her mother and grandmother.
 

northumbrian_k

Registered User
Mar 2, 2017
1,468
0
Newcastle
Hi @ganymede and welcome to Dementia Talking Point. If one suspects that someone has a form of dementia then it is absolutely right to work towards getting a diagnosis and putting a care plan in place. It is not being a rat. You would not expect to ignore any other kind of illness. As @margherita says, taking heed of what your mum needs is more important than what she wants. She may not appreciate it - or even think of it as some kind of betrayal - but it is the right thing to do. My wife used to accuse me of conspiracy and she was right. I was conspiring to get her the best possible care and quality of life. I hope that the support that you will get from DTP members will help you through this difficult time.
 

Rosettastone57

Registered User
Oct 27, 2016
1,583
0
You've done the right thing. Deep down you know you have. It's about getting the right care and support for a person with dementia , because it's about what that person needs not what they want
 

ganymede

Registered User
Apr 28, 2021
56
0
Thank you, all of you, for the reassurance. Your words are very helpful and I appreciate them.
 

ganymede

Registered User
Apr 28, 2021
56
0
I think for me in this new role it's about balancing Mum's wishes with the level of harm that they would cause if I let her. Eating an icecream instead of fresh vegetables might not be *the best* decision for her health but we all do it and feel the harm to be limited. Similarly, buying a book by an old favourite author at the charity shop when I know she's probably got a copy on her bookshelves already. The serendipity of finding something special, and the simple agency of buying it and bringing it home (especially as a gift for Dad) gives her so much pleasure it's well worth spending £1 on something she doesn't really need.

But hiding away from diagnosis, support and possible treatment has taken her and Dad's relationship to breaking point, harming both of their mental health and the stress damaging his physical health. If he had another stroke she would be helpless and terrified without him. She just isn't aware of her own behaviour and its impact and she can't connect his stress and frustration back to her refusal to seek help.
 

Dianej

Registered User
Mar 27, 2021
23
0
Your experience partly mirrors my own. I know I shouldn't feel guilty but I still feel like a traitor for having got my partner to the Memory Clinic by telling him he was going to have his medication checked. He would never have gone if I had told him the truth as he had denied having any problems for two years. In the end, I emailed our GP and she did a memory test by phone and referred himt to the Memory Clinic. He was diagnosed with Alzheimers and told not to drive, both of which he disagreed with and immediately forgot. The consultant referred him for an MRI scan which he refused. He also refused to take the medication she prescribed and says he won't attend his second appointment with her in six weeks time. We have the argument about him not driving every day, a bit like Groundhog Day really. By tomorrow he will have forgotten again, and we'll have the same argument again. Whereas before, he liked and trusted our GP, he now mistrusts the entire medical profession and won't even see the GP about a painful knee joint. I know in my heart it was the right thing to do to get a diagnosis at the Memory Clinic but at the moment it seems to have taken us backwards. He needs 24 hour supervision. We now go out even less than we did because I find it hard to cope with the driving arguments and we can't walk far because he won 't get his knee treated. Meanwhile life becomes more chaotic every day. I was referred to the Admiral Nurses for support and have had my own personal nurse make contact. She would like to come round to give me respite time out of the house but there's no point in even suggesting it to my partner because he doesn't believe there's anything wrong with him and he wouldn't accept her. I even find it difficult to have a private phone conversation with her because he never lets me out of his sight. I sometimes think that if this was any other than a carer situation it would be termed domestic abuse. His family have been supportive but have their own lives to lead. There were lots of offers of help to start with but when they realised how difficult it is, the visits dried up a bit. My partner has always been a kind, loving, affectionate and happy person. He doesn't mean to be difficult, he just cannot recognise the situation, and as long as I am there, he feels secure, which is quite an honour, really. Like your father, I am terrified that the stress will cause me to have a stroke or heart attack because my partner would be helpless. I sometimes wonder how bad things will have to get before they start to get better. Don't get me wrong, there are still good times and I try to make the most of those and keep reminding myself that he doesn't choose the way he is.
 

Sarasa

Volunteer Host
Apr 13, 2018
3,518
0
Hi @ganymede and @Dianej and welcome to Dementia Talking Point. I felt like a rat too, lying through my teeth to get things sorted for my mother. Although it feels so wrong it is usually the best thing to do, as the person with dementia doesn't really get logical reasoning any more.
I don't know if you've seen this thread Compassionate Communication with the Memory Impaired, but you might find it useful when dealing with repetitive questions etc. Don't beat yourselves up if it doesn't always work, I certainly didn't manage it a lot of the time.
 

LadyA

Registered User
Oct 19, 2009
13,703
0
Ireland
If it's any consolation, or gives you even a tiny bit of hope, @Dianej and @ganymede my husband had his first appointment with the Psychiatry of Old Age consultant, and refused to go back for about 18 months. He also refused to see gp about anything. His doctor was amazing - we used to pretend the appointments were for me, and my husband was just keeping me company. The doctor would look at my throat, take my blood pressure, and listen to my chest, while keeping up a constant conversation with my husband, gleaning all he needed to know!
Eventually, the doctor and the consultant came to be regarded as my husband's best friends in the world - he loved going to see them! Double edged sword though - the change was brought about by the progression of the illness. He forgot his objections to seeing them.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
74,099
0
Kent
We are taught to treat others as we would like to be treated ourselves.

Arranging a diagnosis or place in residential care for a family member, without permission, behind their backs, is something we would hate to happen to ourselves and I`m sure this is why we feel so bad.

Many people with dementia are either in denial, unable to understand the implications of their symptoms or simply afraid. In their best interests, a third party may need to take action on their behalf.

There are of course many with dementia who are well able to make their own decisions as we see on this forum but for those who don`t sometimes we have to do what we wish we didn`t.
 

Spanbird

Registered User
Jun 14, 2014
2
0
Shoreham by Sea
If it's any consolation, or gives you even a tiny bit of hope, @Dianej and @ganymede my husband had his first appointment with the Psychiatry of Old Age consultant, and refused to go back for about 18 months. He also refused to see gp about anything. His doctor was amazing - we used to pretend the appointments were for me, and my husband was just keeping me company. The doctor would look at my throat, take my blood pressure, and listen to my chest, while keeping up a constant conversation with my husband, gleaning all he needed to know!
Eventually, the doctor and the consultant came to be regarded as my husband's best friends in the world - he loved going to see them! Double edged sword though - the change was brought about by the progression of the illness. He forgot his objections to seeing them.
I am at the beginning of the journey with a husband who refuses to visit a doctor. He won’t even go to support me. My doctor is very helpful and I can talk to him but I really can’t see how I can get him to a doctor. He becomes very agitated when it is mentioned and this makes everything worse. I hope that things might change but at the moment it is very difficult.
 

Duggies-girl

Registered User
Sep 6, 2017
2,716
0
@ganymede I lost count of the number of times I felt like a rat to dad. First trip to the doctors followed by investigations. The time I took the car away after ratting on dad to his doctor so he would tell him not to drive anymore. The memory clinic appointment and all his other hospital appointments, all arranged by me but what was the alternative, I could have let him kill someone with his car and then starve to death in his chair.

The most ratty crime was when I called an ambulance and got him carted off to hospital where they kept him for 3 weeks. The worst experience of his life and mine but he soon forgot about it, I didn't, and I don't think I will for a long time. I could have left him to die I suppose but we don't we just do damned best to make things right for them and it is hard.

I never told dad he had appointments, instead I would set the alarm on my phone and when it rung I would have an imaginary conversation and then tell dad that he had just be fitted in for a quick check up and we should start getting ready to go. It always spoilt his day and how sneaky was I but it worked every time.

I think you should give yourself a big pat on the back and a nice glass of wine just for getting your mum diagnosed and as for the ice cream, my dad used to have ice cream with double cream on top and why not.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
10,596
0
Yorkshire
hello @Spanbird
a warm welcome to posting on DTP

it is tough if your husband won't engage with the GP and won't even go with you
keep your GP up to date with how your husband is so if the GP can ever get to see him, they know exactly what changes there have been, how he's behaving and what your worries are
maybe when restrictions are lifted the GP might find a reason to make a home visit

might you try dropping a few reassurances into conversations eg a neighbour was telling you that a friend had been worried about his memory and the GP discovered that he was vitamin B12 deficient and put him on regular supplements so he's feeling so much better, how brilliant is that .... or you were reading that stress can cause confusion but this person in the article was prescribed some meds which have helped both the stress and thd confusion; isn't modern medecine marvellous ... it might help your husband think that the GP can help him (I appreciate it may make no difference)
 

ganymede

Registered User
Apr 28, 2021
56
0
I am at the beginning of the journey with a husband who refuses to visit a doctor. He won’t even go to support me. My doctor is very helpful and I can talk to him but I really can’t see how I can get him to a doctor. He becomes very agitated when it is mentioned and this makes everything worse. I hope that things might change but at the moment it is very difficult.
@Spanbird I know how hard that period of time is and I really feel for you. It's five years since we started to see changes in my mum - it took us a year to decide it was time to talk to her; then six months to get her to a GP. The short assessment didn't flag up any concerns at that time and it took another 3 1/2 years to get her back.

If you have a co-operative GP could you put your concerns in writing to them and request them to call in your husband for a "well man check"? My mum's old GP would not do this but her new one was happy to.
 

Spanbird

Registered User
Jun 14, 2014
2
0
Shoreham by Sea
hello @Spanbird
a warm welcome to posting on DTP

it is tough if your husband won't engage with the GP and won't even go with you
keep your GP up to date with how your husband is so if the GP can ever get to see him, they know exactly what changes there have been, how he's behaving and what your worries are
maybe when restrictions are lifted the GP might find a reason to make a home visit

might you try dropping a few reassurances into conversations eg a neighbour was telling you that a friend had been worried about his memory and the GP discovered that he was vitamin B12 deficient and put him on regular supplements so he's feeling so much better, how brilliant is that .... or you were reading that stress can cause confusion but this person in the article was prescribed some meds which have helped both the stress and thd confusion; isn't modern medecine marvellous ... it might help your husband think that the GP can help him (I appreciate it may make no difference)
Thank you for your help it is good to have someone who understands. I have actually had the conversation about B12 and stress but he says he doesn’t want any medication and he is happy as he is! I asked him just to go for my sake but he becomes stressed. He is quite happy to follow his own little routine. We have good days and am pleased that you confirm that I should keep my doctor up to date as I wasn’t sure if this was ethical although the Doctor seems ok about it. This forum is really helpful to me and it helps.
 

ganymede

Registered User
Apr 28, 2021
56
0
Hi @Spanbird, glad that it's helping you to have other people to exchange experiences with. I'm discovering there is a wealth of knowledge and support on the forum, in older posts as well as current ones.

If it helps, it's perfectly ethical for a GP to listen to concerned members of family/close friends of one of their patients. They won't be able to discuss their patient's care with anyone else unless they have the patient's permission, or have made a decision the patient doesn't have capacity. https://www.nhs.uk/common-health-qu...se concerns about,able to discuss any details.

Hope this helps to reassure you that you are doing the right thing. You see your husband everyday and you probably know him better than he knows himself - you are the person best positioned to understand the changes you are seeing in him.
 

Duggies-girl

Registered User
Sep 6, 2017
2,716
0
@Spanbird having a Doctor who is happy to talk to you is really good. Dad's doctor always phoned me about things as there was no point phoning dad unless he wanted a little chat about the weather. It was the same with the hospital consultants too. Thank heavens for a bit of common sense.