How Do We Deal With This

[belgrave]

Hi everyone, I'm hoping some of you may be able to help us negotiate a current minefield...

The story so far: Dad is 74 and was diagnosed with Alzheimer's last autumn. He's been displaying symptoms for some years but gone downhill in the last two years. It was a long road, with the GP saying he was fine many times, despite being fully briefed by us in private ahead of each appointment. Eventually on our insistence he referred Dad to a psycho-geriatrist, Dr M, who again despite being fully briefed declared Dad 'fine to me' and 'just depressed'. Worse still he copied that letter to Dad. Dad has never let that letter go, delighting in the 'proof' that there's 'nothing wrong with me'. We were fuming at the 'diagnosis' and this letter going to Dad.

Finally in September we saw a private neurologist, Dr C, who properly investigated Dad with an MRI and the Addenbrookes test and diagnosed Alzheimer's. He put him on Exelon patches and we have been seeing him every 6-8 weeks. Dad's score has gone from the mid-50s to early 40s in the last year and he's deteriorating fairly rapidly though there's not telling if things will continue at that rate or whether he'll plateau for a while. Dr C advises staying on the patches as his belief is Dad would be even worse without them.

Dad's speech is deteriorating, he's unable to do normal tasks like getting dressed without help, is unable to go out without getting lost etc. He still knows us and has his good moments / days but we can see him slipping further away.

We have not told Dad the diagnosis as we strongly feel that would be too distressing for him, but he has been told the reasons for his memory loss (of which he is acutely aware) is an overproduction of proteins in his brain that the patches are trying to help with.

However he is getting increasingly paranoid. For the last few months he has been insisting that Dr C has been poisoning him and is the cause of his problems and that he was fine before he saw him. He keeps triumphantly referring to that bloody stupid letter from Dr M as proof. He claims that Dr C poured something into him during the MRI that caused his problems and that he and 'several others' don't like him and are all out to get him and are doing this to him. He rants that he wants Dr C struck off for what he's doing, he's not getting away with this, and that he's even admitted to Dad that Dad's the only one he's doing this to but he's not going to stop. He also thinks Dr C is tapping into his television and flashing up messages to get at him.

Dad's brother died a few weeks ago and Dad broke my heart asking me to ask Dr C to 'give me back my power of coherent speech so I can say something at the funeral'. When I said I didn't think it worked like that he said 'it need only be temporary so I can say something, he can take it away again after the funeral'. My heart broke in two.

Mum and Dad have just this week returned to their old house in Dorset that they left two years ago, as Dad was also blaming the town they moved to (to be closer to me and their grandchildren) for his problems and literally did not stop going on about moving back every hour of every day. Mum didn't want to move but felt it was one of the last things she could do for Dad as he wanted to go 'home'. We are also moving to be closer to them.

This morning Dad called me ranting again about Dr C poisoning him and causing all his problems and insisting I give him the number for Dr M so he can tell Dr M what Dr C's been doing to him. He is refusing to see another neurologist in Dorset, or indeed to get any treatment at all. He says what he wants is Dr C to 'be stopped for what he's doing to me and so for all this goes away and me to go back to normal'.

What on earth can we do. How on earth do we handle all of this with him and get him treatment, stop him from going on about Dr C and wanting Dr M etc. I have tried disagreeing with him but we know that doesn't work. I have tried gently saying well if you weren't happy with Dr C let's get a second opinion from someone in Dorset, but he refuses. My heart is breaking for him, he's so angry and frightened.

Mum is caring for him alone at the moment and refusing outside help (that's another story) but I'll be making an appointment with the Alzheimer's Society in Dorset asap to discuss options. Meantime I'd be so grateful for your help / perspective / ideas. I worry so much about him, and Mum, and have two kids under two so feel torn in all directions. I'm the primary contact for his care with the professionals as Mum can't cope with pushing for that side of things as well as looking after him.

Love to all on this horrible journey xxx

 

[FifiMo]

What is suggested when people are paranoid like your dad is not to argue and don't try and convince them otherwise. In his reality this is what is happening and his reactions and emotions reflect this as though it is really happening. So, what to do...the recommended approach is that you enter your dad's world and take responsibility for getting things sorted for him. If he is so attached to a letter, maybe suggest he writes to Dr C and you will help him to do this. Maybe Dr C could respond to his letter and you could write a kindly response that gives him the reassurance that Dr M gave him. The letter might say that Dr C spoke to Dr M and they agree that there is nothing wrong, but the patch is to make sure he stays that way. Dr C might finish by saying he hopes he stays well and if he is ever in the area he would love to meet him for a chat. Get rid of Dr C from your dad's world! Especially if you can arrange for prescriptions for the patches to continue without dad needing to be seen, eg maybe via his new GP.

At the end if the day, your dad doesn't have to know of a diagnosis and certainly doesn't have to accept there is anything wrong with him. I would do whatever I could to de-stress the situation. My view, and it is only my view, is that if the medication is making dad stressed and feel worse, then I would query the value it is adding to his life. I know it might slow down the progress of the disease but in your dad's case, is it worth it if he is miserable all the time. With my mother, I would have gone for quality over quantity every time and although she has been gone for a year now, if I had to do this again, I would do it this way again. So, it might be worthwhile having a discussion with Dr C or Dr M about this.

I hope you find something that helps your dad.

Fiona

 

[Noorza]

Fiona has covered all the bases with her reply, just to emphasise don't argue or say they are wrong. You will never get them to change their minds. All you can do is accept their point of view "sorry you feel that way" that kind of comment and distract.

I know it's hard but Mum changes between me being an awful person and a beautiful daughter. It's a horrible disease.

 

[Grannie G]

Hello belgrave

We relocated from the north west to the south east to live nearer our son.

Like your dad, my husband blamed `this place` for his illness. `This place is killing me` etc.
I agreed to return to the north west because he was in such a state. We sold our house twice and each time my husband backed out, unable to cope with the upheaval of moving and fearing upsetting our son.
I then realised I could not rely on him to make a decision and stay with it, so all important decisions were left to me.

Your dad`s illness is progressive and your mother will need more support from you. Even in his familiar environment, your dad may find someone to blame as he is now doing with the doctors. There will come a time when your mother might need to make the decisions too.

I hope I haven`t painted too black a picture and hope your dad will settle now he is `home`.

 

[pippop1]

How about writing a fake letter from the Dr that your dad trusts to say he should move back nearer to you. The letter can come in the post to him. Your Mum will need the support in the future.

It seems that your Dad sets great store by letters.

 

[zelana]

If you've been seeing Dr C every 6-8 weeks each visit could be fuelling the paranoia as could the patches since your dad probably associates them with Dr C.

Is Dr C aware of your dad's paranoia?

 

[belgrave]

Thanks so much everyone. It's amazing isn't it, things you just don't think of, that wouldn't even be 'acceptable' in the 'normal' world, make so much sense in this horrible one. I value your ideas so much.

FiFiMo, thanks for the suggestions. That sounds like a great idea. And it's food for thought re stopping the medication. It's such a toss up - the most unbearable part for all of us is indeed his awareness that he's not himself. He broke my heart yesterday saying 'I'm stupid, I never used to be stupid'. However he also takes great joy from his grandchildren. Sometimes I'm inclined to think we should stop medication and let the disease carry him forward to less awareness quicker, then I think but who are we to deny him the joy of his grandchildren. It's such an impossible decision. It's one he trusted us with when he set up his POA long ago but then he didn't know he had this disease then.

Thanks too for your thoughts, Noorza. Grannie G, very interesting to hear we're not the only ones with the blaming of places - thanks for that. PipPop1, thanks for the suggestion, their move is done now and we've sold and are ready to move closer to them so I think it's kind of done now. Zelana, Dr C is aware of his paranoia, there's little he can do though but to remain professional with him. As it is he's no longer going to be seeing Dad as Dad's now out of the area so we'll be arranging someone else. We'll see how he reacts to them...

As for Mum, she's having to accept in her own time I think. Meantime I will be gathering together all the info / options and will talk them through with her.

Thanks again everyone, this forum truly is invaluable xxx