Denial

KittieS

Registered User
Apr 16, 2017
11
0
Hello all
My mum in,law is 83 and we believe, as a family, that she has early dementia. This has been the case for several years. She did attend a mental health clinic some years ago but was dead against it throughout as she denied there was anything wrong, then we think she has been cancelling appointments without apps knowing and in the end the clinic discharged her, which she took to mean she was ok. Then she went to a health check with the practice nurse a couple of years ago. The family wrote a letter to the GP detailing our concerns and asking if the health check could be geared towards this problem, her husband went with her, but she apparently performed pretty well and the nurse did nothing. It’s obviously difficult to say anything about her problem in front of her. Over the last couple of years it has got worse. Short term memory is completely shot, she repeats constantly dozens of times, she goes to the local shop and forgets what for and comes back with all sorts, won’t write a list as she says she can remember etc. She also has been known to buy a bottle of wines start it and then forget she has had a drink and keep going till the bottle is gone, she also did this with a bottle of brandy she managed to buy without hubby knowing and ended up in bed with hubby thinking she was having a stroke. She fabricated stuff in her head and dwells on random things that have happened, and gets things completely wrong. I could go on but I’m sure you get the picture. Current thing is that she has been invited back for another health check. Her Hubby is nearly 90 now and not so good so he asked me to make an appointments for her to go when I could be with her. She was against this and said she could manage on her own. I’ve made the appointment and will go if she lets me, but it will be hard to say anything in front of her. I’ve suggested to my sister in law that she tries to have a word with the nurse that will be seeing her, but of course she will probably refuse to do so with patient confidentiality and so on. SIL May have a letter ready in case. Question is what can we hope to gain by stirring things up in this way? Should we just leave we’ll alone and carry on coping with it as there is no way she will happily accept the problem and may well fall out with all of us if it pushed too far! She’s a lovely person and we are very close as I’ve been married to her eldest son for over 40 years, and she and I are never had a cross word. She trusts me and I don’t want that to change. Just not sure at this point what we would gain by going down this route. Any and all advice would be much appreciated and apologies for the long post. TIA.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Its probably not denial, but anosognosia - the inability to understand that you have something wrong with you - which is a very common symptom of dementia. People who have anosognosia will never adnit that they have something wrong with them (even in the face of all evidence) because the part of the brain that understands this has been damaged. Its a very common, but hardly ever talked, about symptom of dementia.

I can understand that all the while you are coping you dont want to rock the boat, but things wont stay the same. Eventually her needs will have to take priority over her wants.

What are the advantages of getting a diagnosis? well. firstly, it will eliminate anything else that might be causing similar symptoms, but is treatable. Also, if it is Alzheimers there is a drug that might slow it down.

Secondly, there is the question of validation: eventually you will have to go behind her back, do things that she has specifically said she doesnt want and use love lies to keep the peace. It is hard to do these things, but if you have a diagnosis of dementia it makes it easier. The other thing that becomes easier (not easy) is if her behaviour deteriorates or she says nasty things and you have to keep reminding yourself that it is the dementia.

There is a question of finances - if you have a diagnosis you can apply for Attendance Allowance (it is not means tested) and also for your mum to be exempt from Council Tax, so that if there is just her and your dad living in the house there will be a 25% reduction.

Eventually you will need extra help - carers, day care, respite etc and you will then need to be on Social Services books. Equally, there may come a time when depression, anxiety, psychosis, aggression or even violence rears its head and medication can help - she will need to be diagnosed before medication can be given.

Dementia is a long road to walk and you, your dad and your mum will need all the help you can get.
 

Sirena

Registered User
Feb 27, 2018
2,324
0
I'd write (another) brief letter for the GP about the behaviour which concerns you now. The GP won't discuss it with you but they will have the info. Whether you accompany her or not you can still send the letter. The GP can refer her back to the memory clinic, but then you have the problem of her hiding referral letters/refusing to go. And if she does go, any resulting paperwork will be sent to her and it sounds as if she's likely to conceal it. But at least she would be 'in the system'. The main reason you need a diagnosis is to provide a pathway to care, which she may need if she or her husband deteriorate. It's very difficult though if the PWD is resistant and no one in the family has Power of Attorney. If you want to accompany her, don't ask, just cheerfully present it as a done deal.

My grandmother had dementia towards the end of her life but never had a diagnosis. She was extremely private and stubborn and would not attend medical appointments. By the time she needed care she was 92 and she self-funded her care at home so lack of a diagnosis didn't really matter.
 

Rosettastone57

Registered User
Oct 27, 2016
1,839
0
Its probably not denial, but anosognosia - the inability to understand that you have something wrong with you - which is a very common symptom of dementia. People who have anosognosia will never adnit that they have something wrong with them (even in the face of all evidence) because the part of the brain that understands this has been damaged. Its a very common, but hardly ever talked, about symptom of dementia.

I can understand that all the while you are coping you dont want to rock the boat, but things wont stay the same. Eventually her needs will have to take priority over her wants.

What are the advantages of getting a diagnosis? well. firstly, it will eliminate anything else that might be causing similar symptoms, but is treatable. Also, if it is Alzheimers there is a drug that might slow it down.

Secondly, there is the question of validation: eventually you will have to go behind her back, do things that she has specifically said she doesnt want and use love lies to keep the peace. It is hard to do these things, but if you have a diagnosis of dementia it makes it easier. The other thing that becomes easier (not easy) is if her behaviour deteriorates or she says nasty things and you have to keep reminding yourself that it is the dementia.

There is a question of finances - if you have a diagnosis you can apply for Attendance Allowance (it is not means tested) and also for your mum to be exempt from Council Tax, so that if there is just her and your dad living in the house there will be a 25% reduction.

Eventually you will need extra help - carers, day care, respite etc and you will then need to be on Social Services books. Equally, there may come a time when depression, anxiety, psychosis, aggression or even violence rears its head and medication can help - she will need to be diagnosed before medication can be given.

Dementia is a long road to walk and you, your dad and your mum will need all the help you can get.

I agree with canary on this. With my mother-in-law who is now 92 it almost came as a relief to get a diagnosis of mixed dementia. She has had mental health issues and a personality disorder almost all her adult life. But with her increasingly vile behaviour over the last few years it became apparent there was something more going on. She had always refused to spend money on herself and I mean by that she would only buy stale bread for example. With the diagnosis and getting POA we were able to get the services she desperately needed to improve her quality of life.

The validation points raised are extremely important. Both my husband and his sister were always angry and resentful having to deal with the mother who was emotionally abusive to them. But with a dementia diagnosis we were both offered a carers support group a six-week course with our local NHS trust. This proved invaluable for my husband who was able then to quantify his feelings towards his mother and now accepts that she is ill and doesn't always know what she is doing. You need to push for a diagnosis it's not easy and as others have said you will need all the support you can get
 

kindred

Registered User
Apr 8, 2018
2,937
0
Its probably not denial, but anosognosia - the inability to understand that you have something wrong with you - which is a very common symptom of dementia. People who have anosognosia will never adnit that they have something wrong with them (even in the face of all evidence) because the part of the brain that understands this has been damaged. Its a very common, but hardly ever talked, about symptom of dementia.

I can understand that all the while you are coping you dont want to rock the boat, but things wont stay the same. Eventually her needs will have to take priority over her wants.

What are the advantages of getting a diagnosis? well. firstly, it will eliminate anything else that might be causing similar symptoms, but is treatable. Also, if it is Alzheimers there is a drug that might slow it down.

Secondly, there is the question of validation: eventually you will have to go behind her back, do things that she has specifically said she doesnt want and use love lies to keep the peace. It is hard to do these things, but if you have a diagnosis of dementia it makes it easier. The other thing that becomes easier (not easy) is if her behaviour deteriorates or she says nasty things and you have to keep reminding yourself that it is the dementia.

There is a question of finances - if you have a diagnosis you can apply for Attendance Allowance (it is not means tested) and also for your mum to be exempt from Council Tax, so that if there is just her and your dad living in the house there will be a 25% reduction.

Eventually you will need extra help - carers, day care, respite etc and you will then need to be on Social Services books. Equally, there may come a time when depression, anxiety, psychosis, aggression or even violence rears its head and medication can help - she will need to be diagnosed before medication can be given.

Dementia is a long road to walk and you, your dad and your mum will need all the help you can get.
Yes, a diagnosis makes things more clear cut when you need them to be. Every little helps, I promise you.
 

KittieS

Registered User
Apr 16, 2017
11
0
Thank you everyone for your lovely replies. You have convinced me that trying to make someone understand is the right way to go and it is in her best interests. We do have powers of attorney for both of them which will help. All the advice you have given makes very sound sense. I will have a word with SIL and get her to write something out for the surgery and see what comes of it. I do feel guilty about it as MIL is such a lovely person and she has been so good to me and my family over the years, we are very close and I dread the thought of spoiling that. What worries us is if dad goes first and we are left with trying to persuade her she isnt completely capable of taking care of herself. She’s only a couple of miles away from us but it might as well be a hundred if she’s on her own and we don’t know what she’s up to! Thank you once again. Will post back if I may if I need further advice or can give an update.
 

Malalie

Registered User
Sep 1, 2016
310
0
I'm very sorry about your situation, and can understand well as my lovely MIL developed Alz/Vascular Dementia at about the same age, although her husband had died a few years previously. Lots of good replies - it certainly does help to get her "into the system" in some ways, especially as you have your elderly Father in law to consider as well.

If she would be self funding, could you try to introduce paid help in the home if FIL would permit? A 'cleaner' or a 'lady who comes round to do the ironing' can morph into a carer or minder quite easily.

I would continue to write a note to her Doctor before appointments - he may not be able to reply, but I'm pretty sure he would read them, and also keep a diary about your observations - just short bullet points - so that should a crisis occur they will have a bit of background.

Should you be permitted to attend her check up, try and sit next to her but slightly back so that the doctor can see your expression but she can't. He will read your face as well as hers and hopefully come to the correct conclusion It's really hard I know, and I felt like I was being disloyal to my dear MIL and friend, but I just wanted her to be as well as she could be.

I hope things go well for you. XX
 

KittieS

Registered User
Apr 16, 2017
11
0
I'm very sorry about your situation, and can understand well as my lovely MIL developed Alz/Vascular Dementia at about the same age, although her husband had died a few years previously. Lots of good replies - it certainly does help to get her "into the system" in some ways, especially as you have your elderly Father in law to consider as well.

If she would be self funding, could you try to introduce paid help in the home if FIL would permit? A 'cleaner' or a 'lady who comes round to do the ironing' can morph into a carer or minder quite easily.

I would continue to write a note to her Doctor before appointments - he may not be able to reply, but I'm pretty sure he would read them, and also keep a diary about your observations - just short bullet points - so that should a crisis occur they will have a bit of background.

Should you be permitted to attend her check up, try and sit next to her but slightly back so that the doctor can see your expression but she can't. He will read your face as well as hers and hopefully come to the correct conclusion It's really hard I know, and I felt like I was being disloyal to my dear MIL and friend, but I just wanted her to be as well as she could be.

I hope things go well for you. XX
Thank you for,this. It is so hard isn’t it! It’s comforting to know that we aren’t the on,y ones with this problem. I will still try and go with her and do as you suggest. May I ask how things are now with you and your MIL? Please ignore if that is too personal. I’ll come back to you if I may and let you know how we get on. Many thanks once again,
 

KittieS

Registered User
Apr 16, 2017
11
0
I thought I’d pop back and give you an update on our situation. MIL had her health check appointment with the practice nurse this afternoon. I went with her as previously suggested. By chance the nurse who saw her was the same one that does my sons learning disability check once a year and recognised me. She went through all the physical stuff and her BP and weight and so on were fine. Then she asked her about her memory and MIL said she thought it might be a bit worse as she had to write things down more (which she doesn’t) and asked if there was a pill she could take to help. The nurse told her there wasn’t. I was trying to pull faces at the nurse but not being too successful! Anyway, got to the end and as MIL walked out the door I took my chance and said to her could she wait in the waiting area as I wanted to ask the nurse something about my sons next health check. I then poured out as much as I could in two minutes, the letter we’d written last year, the repetitions, the confusion, making stuff up, the drink thing, the appalling short term memory and so on. I told her the whole family was really worried and though we didn’t want to go behind her back as we love her so much we felt that we needed some sort of diagnosis to help in the future, especially if hubby goes first, as we didn’t feel she could,take care of herself properly. The nurse was lovely and said she completely understood, and she would make a note to have a word with the GP next week when he is back from holiday. I was so pleased that I’d managed to do it, and yet feeling so guilty that I had. I don’t know what will happen next but hope that she is called in for a further memory test based on the nurses observations. Fingers crossed anyway. Thanks for reading this, it’s done me good to write it down if nothing else!
 

Squishychickfi

New member
Aug 17, 2018
4
0
Hi, this really hit home with me. My mum is in exactly the same position. The alcohol was a real issue. I hope you get things sorted and I will be watching to see how you get on as I’m about 6 months behind you with everything.
 

KittieS

Registered User
Apr 16, 2017
11
0
Yes. Sorry about that as I haven’t got round to updating this thread. We got nowhere with the doctor or nurse so just kept plodding on. Then a couple of things happened to make us sit up and decide we really did need to do something. She went walkabout one afternoon after ‘words’ with hubby and he rang me in a panic. I was lucky that I spotted her in the village but when I stopped the car to talk to her she didn’t seem to know who I was. When she did she was adamant she wasn’t going to go home so I took her to my house where my hubby, her oldest son, was. She told us she had been to the station to catch a train to Yorkshire where her sister lives but she would never have made it from here in Kent as she only had £15 on her and can’t remember her pin. We emphasised she must never do that as we would never know where she was. Several other things occurred as well and in the end I rang the helpline for advice. They reminded me that we have POA and could,use that to speak to her doctor. So hubby and I went to see him and had a long chat. It turned out that some years ago when we persuaded her to go to the clinic she had had a diagnosis of dementia, but because she was obviously intercepting letters and cancelling appointments, they eventually discharged her and none of us were any the wiser. He said that now there was little,point trying to medicate her and that we would just have to deal with things as they came along, and could get help,and support from SS. In a way it vindicated what we were thinking, but also made us realise we needed to come to terms with this fairly quickly. The situation now is that me and my OH are close by and doing what we can to support both of them, discreetly of course, and OHs siblings are stepping up and visiting more. We’re getting a few mood swings and her memory and level of understanding are terrible but we are coping at the moment. Her OH is still pretty useless, but he is 90, this week as it happens, and not in the best of health. We haven’t involved SS as yet as we’re not sure what exactly they can do that we can’t, but I do have their contact details just in case. So, squishy chick fi (love the name) hope things go ok for you and apologies that you picked up,on this when I hadn’t updated it for so long. Lots going on here, I was diagnosed with diabetes, hubby had another heart problem and we have an adult son with autism to support. So busy lives and I tend to forget! I’m watching this thread anyway, which was how it alerted me to your message, so hope you can update us when you can. Take care.
 

dm2

New member
Oct 24, 2018
4
0
I think by the sounds of it, now you are aware of the diagnosis you need to push to get the dementia team involved, and have a navigator (ss) which are very helpful. MIL tried to destroy and dispose of her diagnosis letter and had cancelled appointments before, so we made an effort to find and copy everything. Dementia team send everything in our names now so we get to see and copy it first.

I think you can get financial help too - not huge amounts but can take a little worry off your shoulders as there are plenty of other things you'll probably to be dealing with

Not sure why they won't medicate - MIL has memantine, and its' point is to calm her down - and it does work mostly. It is effected by alcohol so when she sneaks a bottle of wine in, you know as she spends all night humming and singing nursery rhymes and is like a possessed monster the next day. Alcohol agitates as does caffeine, so if you can substitute for decaff, then do so, I may well help a little.