Family denial - how can I help move this forward?

[stargirl]

Hello all,
I posted a long while ago about my father in law, & received some wonderful responses. You're a lovely lot, & I really need your help now.

My FiL has continued to deteriorate. I & my partner, are now in no doubt at all that he is indeed suffering from dementia. His word-finding is profoundly affected, he is unable to follow long instructions or join in conversation, he entirely forgets recent events and is very confused and passive most of the time. Recently his spacial awareness seems to have declined, and I've noticed him bumping into people and things quite a bit. He still drives, which is a worry. He needs a satnav & help to operate this, and help to use his mobile phone or count his change.
Family friends have expressed their concern to us. Last week he ate a raw bacon sandwich, forgetting to cook it or perhaps mistaking it for ham.

The problem is, his wife, daughter and closest friends insist he is fine. They are clinging to his original GP diagnosis - anxiety - and cannot be persuaded to see any other possibility. It is abject denial - sadly he is currently a ghost of the man he was, and it is frightening and frustrating to think that a window of medication treatment might be rapidly closing, and baffling to me that something so pronounced could be missed by intelligent, insightful people!

So my questions I suppose are this:

1) family members - what did people say to you early on that was helpful in prompting you to seek further treatment? Did anyone here go through a period of denial like this?
2)People with a diagnosis - did you know there was a problem prior to family intervention? How much is my FiL likely to be aware of his condition & denying it too? Whenever we ask him about it he looks panicked and says he is fine.
3) If we were to write to the GP formally expressing our concerns (& our disappointment that he has been dismissed 3x by them!!) would we be able to request that this letter is concealed from the rest of the family? Is it likely to help?

Many thanks for any insight xxx

 

[cragmaid]

I think this needs to be bumped up...
I used to niggle away at my Mum about her " colander brain".
Luckily, in her case she'd stopped driving due to major eyesight problems before Dem. got involved, but if you are concerned about the old man's driving, you could always shop him to the DVLA and to his insurance company anonymously.
I would write to the GP and ask him/her to call Dad in for a full check up, Keep a diary and provide the GP with a copy showing your concerns. Mantion that you are now very concerned and that you feel that there is an accident waiting to happen which may be preventable.You could ask that your leter be held in confidence, but I wouldn't...be open from the beginning would be my route. Saves any arguments when it comes to light, and it will. good luck.x.

 

[BR_ANA]

My sister noticed my mom dementia years before me.

My denial phase ended on a crisis.

Maybe you can point to them that a normal eldery dont do things that your fil. does.

 

[Katrine]

Why the denial? Hard to say, other than that some people react to things they don't know how to cope with by pretending that these things aren't happening.

To some people it would seem that suggesting there is a medical problem sounds like criticism. The person concerned must be protected from appearing to be weak or imperfect. The status quo must be maintained because change is bad. We don't want change and we're not going to allow it to happen. At its simplest, some families just don't talk about these things so they go into group denial, because the subject is taboo.

It is good that you and OH can destabilise this wall of denial, but don't expect his family to thank you for it, or to co-operate. You could even be blamed for making him ill - he was fine until you stressed him out with all your interfering.

The GP is the first step to seeking medical treatment, such as it may be, and putting him on the health and social care radar, which he may need to get services and extra help and funding.

If he is unsafe to drive then ring DVLA to report him. They'll send him a medical questionnaire and recommend that he consults his GP to get up to date information about his health. DVLA won't tell FIL who reported their concerns; it is confidential.

 

[Dave K]

The problem is, his wife, daughter and closest friends insist he is fine. They are clinging to his original GP diagnosis - anxiety - and cannot be persuaded to see any other possibility. It is abject denial - sadly he is currently a ghost of the man he was, and it is frightening and frustrating to think that a window of medication treatment might be rapidly closing, and baffling to me that something so pronounced could be missed by intelligent, insightful people!

Hi StarGirl

My sympathies are with you totally

I too am stuck in your boat where I am the only 1 who knows that there is a problem with my wife, she is not the same person I married 21 years ago by a long shot

We have 4 kids, all grown up and 3 of them are burring their heads in the sand completely saying that there is nothing wrong with their Mum and the 4th lives at home who understands that there are serious problems his mum thankfully

It seems a long and slow process to get a real diagnosis, Memory team visits, GP visits, numerous hospital visits for brain scans (Cat, Spect), telephone calls from various departments, appointments, letters etc. etc.

But still 3 kids (adults) say there is nothing wrong with their mum even though is is absolutely obvious that their Mum is not the same person she was 5 years ago, 3 years ago, 1 year ago even 6 months ago

I am afraid that they will be the ones that are totally devastated but only when it is too late

I have tried calling them, talking to them but I get "Blown Off" as "there is nothing wrong with my Mum"

I can understand that folk will bury their head in the sand if they are that way inclined, I simply do not understand it, that's all

I know when it gets so bad that Mum (my wife) is absolutely incoherent that I will be the "Bad Guy" for not telling them that Mum (my wife) was deteriorating so badly and so fast, but I have tried, I really have tried but they are either not interested, doubtful, as they love their Mum or simply burring their heads in the sand hoping it will all go away

So, like you, I am stuck between a rock and a hard place.

I can not tell you what to do but this is what I am doing

I will keep on telling the kids (adults) that their Mum is not well, even if they do not want to listen

I will also arrange, take and be with my wife for all appointments (Memory team, GP's and hospitals) no matter where and when, then I will tell the kids (when they ask) what has been happening

I will not keep anything from the Kids (adults) as when, and it will, maybe 1 year or 10 years from now, then I will have a clear conscience as I tried to keep the family informed but they simply buried their head in the sand for all these years

2) People with a diagnosis - did you know there was a problem prior to family intervention? How much is my FiL likely to be aware of his condition & denying it too? Whenever we ask him about it he looks panicked and says he is fine.

I can only speak of my experience of Dementia.

My wife absolutely thinks I am out to get rid of her as she totally denies that she has a problem, will not recognise it, will not speak about it. Even at the memory clinic, doctors and her GP she will tell them that there is nothing wrong whatsoever and it is all my doing (me)

So, No your FIL may adopt this attitude and there is nothing you can do about it...

3) If we were to write to the GP formally expressing our concerns (& our disappointment that he has been dismissed 3x by them!!) would we be able to request that this letter is concealed from the rest of the family? Is it likely to help?

This I do not recommend, but the choice is yours, I would involve your FIL and family and go to the doctors, as I did with my wife (I booked the appointment) and told the doctors verbally of my concerns in front of my wife then let the doctor take over, I went to the memory clinic, I went to the hospital appointments, I have been there every step of the way even though I have taken flak from my wife and the family seems to not only be denying this situation but also seems to be distancing them selves from the both of us, but this is the price I must pay to help my wife get the help we both need

Final Note

As to the driving, loose his keys, phone the DVLA (anonymously) as YOU know he has a problem and if your FIL ran over a child, or anyone in fact you would never forgive yourself for the rest of your life

My apologies if this post is a tad too long but my concerns can not be written in a few short sentences

I wish you all the best

 

[LYN T]

Hello all,
I posted a long while ago about my father in law, & received some wonderful responses. You're a lovely lot, & I really need your help now.

The problem is, his wife, daughter and closest friends insist he is fine. They are clinging to his original GP diagnosis - anxiety - and cannot be persuaded to see any other possibility. It is abject denial - sadly he is currently a ghost of the man he was, and it is frightening and frustrating to think that a window of medication treatment might be rapidly closing, and baffling to me that something so pronounced could be missed by intelligent, insightful people!

So my questions I suppose are this:

1) family members - what did people say to you early on that was helpful in prompting you to seek further treatment? Did anyone here go through a period of denial like this?
2)People with a diagnosis - did you know there was a problem prior to family intervention? How much is my FiL likely to be aware of his condition & denying it too? Whenever we ask him about it he looks panicked and says he is fine.
3) If we were to write to the GP formally expressing our concerns (& our disappointment that he has been dismissed 3x by them!!) would we be able to request that this letter is concealed from the rest of the family? Is it likely to help?

Many thanks for any insight xxx

Well my Husband was suffering with 'Anxiety' for 6 years before being diagnosed with Alzheimer's -and by then he was already at the moderate/severe stage. In Pete's case he was told over and over again that he did not have dementia. The AD was also missed on a scan-obviously not helpful. He saw psychologists/psychiatrists/neurosurgeons and they all dismissed his concerns over his memory. He was 59 when all this started and to be quite honest I believed the medics (probably I wanted to believe) but at that stage I tended to not question 'experts'-how things have changed.

After a while my head popped out of the sand; but his helpful GP had retired and I was dealing with a new GP who, IMO, was out of his depth.I wrote a letter to the GP outlining all of my concerns then saw him on my own.

By all means write to the GP but try to give specific examples (by this time I was keeping notes) I've no idea if the letter will be shown to the family or not-sorry no experience of this.

As to whether your FIL has any insight into his condition -I understand from being on this Forum that some people do, some don't. However, I wouldn't keep asking him as you may end up being alienated from the rest of the family if you are viewed as upsetting him.I never had that conversation with my Husband-as I say it was too late for that by the time he was diagnosed.

Good luck and take care

Lyn T

 

[stargirl]

Thank you all so much for your input. I wish I could give each of you a right hug.

Lyn, I feel very much for you, & fear your situation is/will be very similar to ours. My FiL is in his early sixties and has been showing symptoms for several years, & I do believe he is already bridging into moderate level dementia.

Great advice re specific examples - we are thinking we might put headings & just bullet point a few examples for each, to increase the chances of GP taking it in.

I know my wonderful MiL is very much 'don't question the experts' - I think this sums t up well. I don't believe she has even googled dementia, as she is entirely satisfied that a medical professional has ruled it out. I'm pondering emailing her a link to a page & asking her to read it, as any overview of AD is a clear description of my FiL. How do you think you would have responded to this, in your denial period? Many thanks for your help x


Thank you cragmaid for the bump and for the info about writing to the DVLA. I think this is he best course to take, & hopefully if he presents at the GP with this request shortly after the GP has received our letter, there's a good chance he'll be out through some more tests.

Ana and Katrine, thank you for your honesty - it is a great help to hear from people who have been on the other side of the denial wall. I fear you are right, & we are risking their anger now in our attempts to make them see - I especially worry about this, being a new addition to the family. But I can't sit back watching everyone suffer like this

Is it worth it? We ask ourselves this a lot, maybe you folk can answer it. I imagine a diagnosis will help my FiL & MiL forgive his mistakes - at the moment there's a lot of blame and 'you need to try harder' and covering up. & self care is definitely an issue, & I imagine there is help available here. Even just accepting he needs visuals and alarms and stuff.
But are we robbing them of their last few months of blissful ignorance? Should we just wait now for crisis point?

 

[stargirl]

Dave, thank you for sharing your story. I'm so sorry to hear you're in a similar situation, & I think there will be more similarities as our journey continues. My FiL is likely to try to refuse treatment and fight attending appointments.
For this reason I don't even think we could take him to the doctors - short of just surprising him and taking him along one day, which he might possibly helpfully forget about afterwards. My MiL would be furious at this meddling though, & I know my partner does not want to cause her any more pain.

I hope your children see the truth soon. I can't for the life of me imagine why these people think we keep insisting there is a problem if there isn't! When we'd so obviously love nothing nothing more than for everything to be ok.
If we find a magic solution along the way, I'll be sure to let you knw x

 

[LYN T]

Thank you all so much for your input. I wish I could give each of you a right hug.


Great advice re specific examples - we are thinking we might put headings & just bullet point a few examples for each, to increase the chances of GP taking it in.

How do you think you would have responded to this, in your denial period? Many thanks for your help x

Bullet points would be great.

What stopped me being in denial was a very good friend telling me straight. She used to own a NH). I just said 'but everyone says he isn't suffering from Dementia'. She told me again that P was. She was very firm. I cried.That's what did it for me.

Your MIL may or may not read what is sent to her-whether she believes what she reads and associates it with her Husband is anyone's guess. To be honest I would have read it but whether I believed it-well eventually.

May I suggest you google 'Reisberg dementia' (It may be Reisburg) which sets out the stages of AD.It would give you some more info but I think to start with it may be too much for MIL to start with

Good luck and take care

Lyn T

 

[MeganCat]

At first I was in denial - I lived away from her and so didn't see her often - it was bereavement ( no longer reading, knitting, socialising etc), she'd snap out of it

Then a relative rang and told me she wasn't coping and her house was a tip - I went up home and had a shock - my once immaculate mum was unkempt and obviously hadn't been keeping herself or her house clean.

My relative said it to me straight - do you think it's Alzheimer's? She'd had a parent with it. I felt like a rug had been pulled. Distance made it seem more frightening.

She took mum to the GP on the pretext of a over 70s check up - I wrote to the GP in advance and set out my concerns. The GP gently asked some questions in with her physical check up to test her memory and she was referred to memory clinic and social services. Mum never had any insight (or didn't acknowledge that she was worried). Getting her on their radar meant that we could gradually introduce carers - she wasn't happy though!

 

[Benrese]

Hello to Stargirl and other posters!

I wanted to thank you for started this thread. I have found it very helpful and reassuring in some ways.

We have the same problem in our family, indeed. Our dear relative has had some small strokes over two years ago and has started to decline in her memory. It's crystal clear to myself and my husband. However, the one person who we hoped would be the one to support our family member, her husband-is unwilling to accept any of this.

He has insisted that we must not speak of it, must not even tell her that we know she had these strokes. This all points to vascular dementia.

The way I see it, there is the gatekeeper, our relative we suspect of vascular dementia and her right-hand-man-her Husband who will protect her secrets and fears until the end. Sadly, he has Parkinson's and has started to suffer greatly from forgotten medicine, a very anxious and irritable wife and generally he is walking on eggshells, not really well enough himself to do anything about it and most certainly he does NOT speak to her about this. There are NO doctors appointments, no help from the outside world. This is their business and they refuse anything at all.

We just wish there were some middle path between realizing the problem and waiting for a crisis to happen.

Thanks and I will look forward to seeing what others share too!

Good luck to you, I know it must be so difficult.