1. DMac

    DMac Registered User

    Jul 18, 2015
    537
    Female
    Surrey, UK
    Hello,

    I wonder if anyone out there could give me some advice please?

    I care for my 77-year-old mum-in-law who has dementia, at this stage not formally diagnosed. She lives with my 82-year-old dad-in-law, who also suffers some cognitive impairment following some major surgery. I would like to know some strategies to help overcome my mum-in-law's denial about the seriousness of her condition, so that she can come to terms with it, and accept the help that is (or could be) available to her.

    My sister-in-law, who also provides care for them, took Mum-in-law to the doctor today, and the doctor has arranged for a referral to the local mental health hospital for an assessment. I understand it will take about a month for the appointment to take place.

    Meanwhile, I am visiting 3 or more times per week to bring them a cooked dinner, and I often eat with them. I also leave them a meal for the next day. I do this because Mum-in-law has recently lost all interest in food, and it seems the ability to prepare even the simplest meals. On some occasions, I have found the festering remains of half-eaten ready meals in the fridge or the microwave. As a result, she has lost a lot of weight recently. I can carry on with this arrangement for a few weeks, but not indefinitely as it is, in effect, preventing me from getting a job (I was employed until very recently).

    My sister-in-law, who also provides care for them, suggested that she should try meals-on-wheels, but she adamantly refuses to accept this. I think she objects because of the association with "old people". I have checked to see if there is an alternative provider of a hot meals service, but unfortunately not so in the area where they live. So it seems that I have no choice but to continue bringing meals to them at this time.

    Another issue we face is that she is adamant that she is able to continue driving, but we have real concerns about her driving skills. (Dad-in-law gave up driving years ago, thankfully). She does not drive very frequently, which is a blessing. Because we bring everything to them or order things online, she really has no need for a car at all. Unfortunately, she does not cope with learning new routines very well, so I do not believe she could cope with ordering taxis. I did phone her doctor's surgery to tell them that we think she should not be driving any more, so I am hoping the doctor can help with this. The difficulty we face is whenever one of us (their children) tries to raise the subject, she just gets very defensive and tearful.

    I have raised these issues with Social Services, to see if we can get a re-assessment of their care needs. Dad-in-law is already a customer following an operation for bowel cancer in January 2014. He has agency carers visiting him every morning, and my sister-in-law provides night-time care. Social Services will do the reassessment, but they tell me this could be some weeks away, and they are challenging me to put in additional care at our own expense in the meantime. This would not only be expensive (Dad-in-law is currently self-funding), but also I fear would not be acceptable to mum-in-law, for the same reason she refuses meals-on-wheels.

    I feel very frightened for them, and really unsure what to do for the best. Obviously, the last thing I want to do is to leave them in a vulnerable state, but I feel I cannot do much more for them at this stage, especially given Mum-in-law's pride and unwillingness to understand that she needs help now. Any advice you could give me would be very welcome.

    Thank you.
     
  2. canary

    canary Registered User

    Feb 25, 2014
    9,643
    Female
    South coast
    Hi DMac and welcome to TP

    I think we all recognise the stage you are at. Unfortunately loss of insight is a major symptom of dementia. Mum never accepted that she has dementia and now does not think/remember that she has anything wrong with her at all (she has atrial fibrillation with angina, heart failure, kidney failure as well as Alzheimers, but hey ho)
    I think this is a really difficult stage where they need extra help, but do not understand that they do and will refuse it. :(
    I never did find a solution and Mum eventually went into a care home, so Im hoping that someone else will be on soon with more advice, but I wanted to say that you are not alone.
     
  3. Delphie

    Delphie Registered User

    Dec 14, 2011
    1,249
    I can only echo what canary's said. My mum's been in denial all along and continues to be even though she's now in a care home (although I'm not sure that denial is the right word, she simply firmly believes what she believes and she believes that she's fine, great in fact!).

    I never found a solution, though I tried to help her myself and tried to employ carers and did all the usual stuff of payed for people pretending to befriend and so on. My mum was always independent and ever so slightly anti social too, and just wanted to be left alone, even though she wasn't washing, the house was a state, food was rotting everywhere and she was starting to get lost when she went out.

    So I'd say do try what you can, but don't beat yourself up if nothing works.

    But I'd also say that the driving bit is non negotiable. If you feel she's a risk to herself and others then disable the car, pretend it's broken, and take it off to be fixed, although the parts for the fix will take quite a while to come. You get the drift.

    It's a horrible stage to be at, when there's enough independence but not enough insight to see that things are heading in a very bad direction. For us, the bystanders, it's heartbreaking and stressful.
     
  4. DMac

    DMac Registered User

    Jul 18, 2015
    537
    Female
    Surrey, UK
    Thank you

    Canary and Delphie, thank you for your words of support. It really does help. From reading your replies and other posts on this forum, I can appreciate that I'm not alone.

    Also, it helps me to get a sense of perspective about my situation. As you rightly say Delphie, it's important not to beat myself up if some particular strategy doesn't work.

    Having said that, I do recognise that it's vital to get the driving situation sorted out sooner rather than later. However, I can see the frustrations other TP members have encountered in trying to resolve this situation the 'official' way via GPs and the DVLA. Much as I hate being underhand as it goes against my nature, sometimes the greater cause must prevail. I shall work something out and let you know how I get on.

    Thanks again for your support. I really appreciate it. :)
     
  5. Pollyanna153

    Pollyanna153 Registered User

    Jul 15, 2015
    41
    Hi my husband has been diagnosed with dementia and I had to contact the dvla for their authorisation for him to be able to carry on driving. They write to doctors text and reply if your mother should continue driving. It is possible she may not be insured by. Not declaring it.
    Hope this little information may be of help
     
  6. DMac

    DMac Registered User

    Jul 18, 2015
    537
    Female
    Surrey, UK
    Thank you Pollyanna. For everyone out there in the same situation, dealing with drivers in denial, here is a brief update. To cut to the chase, I disabled Mum-in-law's car last night, after she had gone to bed. Not easy with her car parked on her driveway, just below her bedroom (nowt wrong with her hearing!), on a busy road, in full view of passing traffic and pedestrians! All I did was to lift the bonnet and disconnect a battery lead, but it was scary stuff! I'm just glad the deed is done, and for the first time in ages I slept soundly last night.

    Just to show that I'm not a total hooligan, I should say that I've also followed all the official routes. I have raised my concerns with her GP, I have e-mailed the DVLA, and I have notified her insurance company. Maybe, one day, one of these venerable institutions will respond at some time in the far distant future when they clear their backlogs, but I don't hold out much hope of that happening soon. I even tried to get her to refer herself to a driving assessment centre, but she wasn't having that - even though in an earlier conversation she seemed willing to give it a try. The bottom line is, there is no way of rationalising with Mum-in-law in her present condition. I'd rather she was mad at me (if she ever finds out it was me) than the far more unthinkable consequences of what she might do to herself, or worse still, someone else, if she got behind the wheel again.

    Good luck to anyone else out there in the same situation. Just do it - you know it makes sense.

    God bless. xxx
     
  7. Raggedrobin

    Raggedrobin Registered User

    Jan 20, 2014
    1,432
    Hi DMa . Going back to the general denial thing, indeed, it may seem as if the person has the logic to realise they are not being logical but that is one of the early symptoms that something is wrong. It is very, very hard but it is necessary to accept that many people with dementia simply don't have the bit of their brain functioning properly that deals with logical thought. It appears to be denial, but it actually isn't; they are instead losing the capacity to think logically.

    The best thing to do is for you to accept that is, very sadly, how it is for some dementia sufferers and start to work around it. It means sometimes having to be quite underhand to prevent people doing things that could harm themselves or others, love lies as they are called on here but indeed it does stretch one's creative thinking.
     
  8. jannie54

    jannie54 Registered User

    Jun 29, 2015
    5
    Mum in denial

    Hi Everyone

    My 89 year old Mum has been diagnosed with mixed dementia..and doesn't understand or believe anything is wrong..she feels all the doctors do not know her and that myself, my sister and my brother are being horrible..
    she refused to have a CT scan and take any medication
    The social services have phoned to arrange a care assessment and she just puts the phone down on them saying she doesn't need any help and the district nurse came around to do a bladder scan because incontinent and she refused to let them in.

    She lives with her partner who is 90 years old and their health and welfare is a worrying issue..she will not accept any help from us and refuses a care assessment..she believes she is doing everything in the home but she is doing nothing..the place is very dirty, the laundry is piling up, they are both losing weight because not eating properly..she is incontinent, but forgetting to wear pads, not changing her clothes or washing herself..it's horrible to say but she smells and so does the home..we have tried every way possible to help her but she screams at us to get out and at present will not even talk to us because we tried to explain she definitely needs assistance..her partner tries to tell her we are right, that they both need care and assistance but she just threatens him that he will have to pack his bags and leave if he agrees with us rather than her..it is very tough on him at 90 years old and very frustrating and worrying for us.

    I just need as much help and advice as possible, because I do not know which way to turn
     
  9. Moray05

    Moray05 Registered User

    Aug 20, 2015
    3
    Central Scotland
    Hi Jannie
    Your situation sounds really difficult, my advice to you would be to 'trick' your mum into some of these things. Eg. Care assessment (remember they have dealt with many types of people and will/should understand), if you can attend the appt, tell your mum you've invited a friend of yours round for a cuppa (make up a reason you chose her house), introduce them and encourage your mum to stay in the room to chat to them. Re hospital appt, could you tell your mum that you've got an appt that you'd like her to come with you?
    There's not a single carer of dementia that'll go to Hell for a few white lies
    Good luck xx
     
  10. JayGun

    JayGun Registered User

    Jun 24, 2013
    298
    I say this a lot on here since I found out about it - what about a fire safety check?

    A fireman is nothing to do with being old or ill or having dementia, so people will let a firefighter in when they would slam the door in the face of a social worker, but the fire officers in our area - and many others - can refer to various other agencies and get them the help they need.
     
  11. Clarthur

    Clarthur Registered User

    Aug 21, 2015
    1
    Clarthur

    Hi Raggedrobin

    My husband is coming up 75 and does not accept that he has dementia. As a result of that has never been diagnosed with it. He categorically states that HE HAS NOT got dementia or Alzheimers. So I play the game and go along with that. It is useful to know that he isn't just being perverse, or in denial, and as he has been such a deep academic thinker and writer, I would go along with the lack of logical thinking.

    As has been mentioned in other posts, my worry is him driving. When he does drive, and I try to keep it to a minimum, and where he is on a familiar route, I have had no qualms, or scares at all. He gets really cross though when he thinks I'm trying to stop him driving, as he doesn't think their is any reason why he should not.

    Some friends and family think that I should tell him that he has dementia, I go to all medical appointments (and they are numerous due to Irritable Bowel Syndrome, shoulders, neck, toes, etc.!!) 18 months ago his GP gave him a short memory test which he failed, so referred him to the Memory Clinic. He has flatly refused to go. the GP asks him about this, but he says he doesn't need it! End of story. I feel that I am his "rock" and if I were to try to tell him, then his confidence would go further down and there would be no-one he could trust.

    Has anyone any suggestions? This is the first time I have done this and feel quite disloyal.
     
  12. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    9,798
    Merseyside
    Hello Clarthur :)

    My Dad is in denial about his vascular dementia & we really don't see the point in distressing him by keep telling him.
     
  13. JayGun

    JayGun Registered User

    Jun 24, 2013
    298
    We never say that something is happening because of mother in law's dementia.

    It's always a job creation scheme for the young people, or mums who need some part time work - or something the government make you do when you're over 80 (or whatever age she is.)

    We never link it to dementia because of course she doesn't have that. :D I'm currently trying to persuade my mother in law that she could let "my friend" come round to do a bit of cleaning - even though she definitely doesn't need the help of course -because "my friend" really needs a little job while the kids are at school.

    Mother in law always hurts herself when she gets the ironing board or the Hoover out these days, but she can't remember that, so she says she's fine and doesn't need any help. And it's a two man job to do the housework for her, because somebody has to take her out while somebody else does the work. And to be honest, I've got enough to contend with with my own housework. I really don't enjoy doing mother in law's as well.
     
  14. DMac

    DMac Registered User

    Jul 18, 2015
    537
    Female
    Surrey, UK
    Update

    Thank you all for the comments you have posted on this thread. I have found them comforting. Ragged Robin - it was especially insightful when you explained that MIL is not in denial, but is losing her capacity for logical thought. I try to remember that every time I cross the threshhold to my PIL's home. I make a mental note to leave my logical brain in the porch, and try to think calm, comforting, reassuring thoughts instead. I try to remember to retrieve the logical brain on the way out though!

    I realise it's been a few weeks since posting my original entry. Since then, things have moved on in some areas, others not so much. Here is a brief update:

    Driving - 6 weeks on, the car still remains disabled in MIL's driveway. My BIL said he'd take care of selling it, but so far his holidays have got in the way. MIL is stressed about the car 'not working' though. 3 weeks after sending off the form to the DVLA about her difficulties with driving, we are awaiting their decision. I guess this could be another 3 weeks away. Meanwhile, we try to distract her by changing the subject. I am learning to become adept at distraction techniques!

    Finances - with a lot of help from my local Alz society, we have applied for Attendance Allowance for MIL, and re-applied for DIL (he has been receiving this for some time after hospitalisation for bowel cancer, but it expires soon), plus council tax reduction and for Carer's Allowance for myself.

    Shopping - I no longer take MIL with me, but do shopping for her instead. My husband has PoA for them, and gives MIL small amounts of cash to spend in a local shop. Seems to work reasonably well, as it gives her some sense of independence.

    Feeding her cats - I sneak in a pouch of food for them whenever I can. She berates me for this and I apologise and say I won't do it again. Except I forget my promise and we repeat the cycle over again. At least the cats' weight have stabilised now.;)

    At the present time things are quire stable, but I'm well aware that they could be only one step away from needing a care home. I've posted a separate comment about this topic on a separate thread (Care home or home care?), so won't repeat here. But I would appreciate any advice on what I should be thinking about next.

    Thank you.
     
  15. In a Whirl

    In a Whirl Registered User

    Feb 23, 2015
    62
    Re the driving. The Police were very good. We gave them a location & time to meet up & follow Dad. They followed him for a while & then pulled him over & had a quiet word.Worked a treat. Dad came home & said he thought he would give up driving as there were some mad drivers on the road nowadays & everybody went much too fast.
     
  16. DMac

    DMac Registered User

    Jul 18, 2015
    537
    Female
    Surrey, UK
    A further update

    4 months in to my caring role and things have moved on a stage or 2! Here is a brief update:

    Driving - 10 weeks after I first notified the DVLA about MIL's condition, she has now - at long last - received a letter telling her that her licence has been revoked. In the meantime, a couple of weeks ago, my BIL sold her car. Strangely, thankfully (from my point of view), she seems to have accepted the fact that she can no longer drive, without too much anguish. I do understand that the DVLA have to go through due process before making such a momentous decision, but 10 weeks??? Is that typical/ reasonable?

    Finances - Attendance Allowance for both MIL and DIL now in place, and I get carer's allowance. The process of getting a FORMAL diagnosis of dementia for MIL is underway (and what a long process this seems to be!), but one benefit of having a diagnosis I understand could be a council tax reduction. Of course, there are other good reasons for having a diagnosis!

    Future plans - this is the topic very much in the front of my mind right now. Of course, no-one can predict the future, but it seems to me to be good sense to prepare as much as possible so as to avoid a crisis, or at least be able to respond appropriately if (or should I say when!) a crisis does occur. To this end, I'm focusing on:-
    - Encouraging one BIL and my SIL to arrange Health & Welfare Power of Attorney, whilst both their parents still have capacity (we already have financial PoA in place)
    - Encouraging those with PoA to notify appropriate organisations about this fact, to make dealing with those organisations easier in future
    - Encouraging my in-laws to think about increasing and formalising their care package (I've said before that I think their current care arrangements are too fragile)

    As before, I really would appreciate any advice on anything else I should be thinking about at this time. Your views really are welcome.
     
  17. canary

    canary Registered User

    Feb 25, 2014
    9,643
    Female
    South coast
    I think you have got just about everything covered DMac :D

    It is hard work, but each thing that is done wont need re-doing. Im so glad the driving is no longer an issue as it can often cause so much heartache
     
  18. DMac

    DMac Registered User

    Jul 18, 2015
    537
    Female
    Surrey, UK
    #18 DMac, Oct 14, 2015
    Last edited: Oct 14, 2015
    Canary, thank you for the reassurance - it is most helpful!

    Yes, the fact that the driving issue has gone away is a HUGE relief! I'm still celebrating!!
     
  19. DMac

    DMac Registered User

    Jul 18, 2015
    537
    Female
    Surrey, UK
    Now have a diagnosis for Mum-in-law

    Last week, my mum-in-law received her diagnosis from the memory clinic. It's Alzheimer's. This is no surprise to us (family) at all, and MIL seems blissfully unaware! My sister-in-law went with her to see the consultant, and I understand he was very gentle with MIL, just having a brief chat with her, and actually spent more time with my SIL to explain what would happen next. Main thing is, MIL was relaxed and even said how lovely everyone at the clinic was! :)

    The interesting thing is that her diagnosis is recorded electronically. This means that other medical practitioners should have access to her notes on this diagnosis. I expect this will be relevant, as it looks as if she could need a hip and/or knee operation in the near future. I've seen another discussion thread about surgery and dementia, and I guess each case is different. Whichever of us goes with MIL to see the ortho consultant, we will be sure to ask about the benefits of the operation v. the risks, especially the effect of the anaesthetic.

    Dad-in-law also has an upcoming appointment to see a surgeon about his hernia repair. He has the most enormous hernia in his groin. It's worrying as one doctor has said to us that it could become strangulated, and cause a medical emergency. Another doctor has said it's best to leave well alone, because of the risks associated with further surgery, but perhaps a truss will help to give him some support. That sounds fine in theory, but I can't imagine how we will manage to keep it clean, given his difficulty wiping himself clean after bowel movements!

    For both of them, the prospect of surgery brings to the forefront the ongoing issue of ensuring they both have adequate care. This could well be the 'tipping point' that sees one, or possibly both of them, going into a care home or nursing home, either for a period of convalescence, or maybe even permanently. It's clear to me that neither of them would be capable of looking after the other following an operation of any kind. I just hope that my sister-in-law doesn't decide (or get pressured into) to take on too much and extend her present caring role. Likewise, I hope I don't get pressured into taking on more.

    So that means the issue of funding their care costs will also come to the fore. My personal belief is that it would be wise now to contact a SOLLA adviser to work out the best way of managing their assets to ensure they have the care funding they need, whilst (legitimately) protecting as much of the grandchildren's inheritance as is possible. Other members of my family think they know everything about everything to do with finance, so I guess I shall have to take a step back and let them sort this out for themselves. :rolleyes:
     
  20. canary

    canary Registered User

    Feb 25, 2014
    9,643
    Female
    South coast
    Good, Im glad she now has a diagnosis - thats another thing sorted. Dont forget to go and see your GP to get him to fill in the form for Council Tax exemption.

    Dont worrry too much about possible scenarios in the future and everything about possible surgery. With dementia everything can change very quickly, so its impossible to plan too far in advance. Just see what happens at the appointment for your FIL and take it from there. You have to keep in the back of your mind possibilities, but go with what works at the moment. OK for now is a good dementia mantra
     

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