Dad Recently Diagnosed

[LucyHP]

Hello, I have just joined this evening and am looking to offload!! My 79 year old father was diagnosed with Alzheimers last week. It didn't come as a complete surprise to my sister and I as we'd seen so many changes in him over the past months. However he doesn't seem to be accepting or understanding the diagnosis (or both). He is still searching for what is wrong with him, tying the GP up in knots with all manner of complaints as he is certain they will find something, give him some tablets and he will be 100% better and back to his usual self again. We tell him that they have found something - dementia and that he has tablets to slow it down. Do we tell him that he will never be 100% again? Would he understand? Or do we just go along with his constant theories of what could be up? He's refusing to give up driving - but we know he has to inform the DVLA and his insurer of his diagnosis. He initially said a flat NO to us applying for power of attorney - but I think he has come around on that after a trusted friend who is a financial advisor set him straight. He won't accept any help from my sister and I, let alone any external sources. He lives alone and I know we will struggle to ever move him on from his house when the time comes. It's heartbreaking. Since the diagnosis I at least have a new found patience with him, where as before I just though he was being a grumpy, stubborn old man.
Sorry - a lot of rambling. It just feels very overwhelming at the moment (worse for him I'm sure).
Thanks for listening xxx

 

[Jaffy]

It feels overwhelming because it is. I see different reactions with different people. I would say you and your sister would be best to know how to inform or not inform him. Denial is common. My son's mother-in-law seems to be in the last stage of ALZ according to web sites. She doesn't believe in going to doctors she is nearly 80 and still drives! So who knows what is wrong but I see her about every 3 months and she seems to have gone downhill 50% each time. How many 50% does she have left? I know from experience that stress can make the dementia a zillion times worse and an amazing "recovery" can occur if some stress can be removed. I am sorry you both are going thru this but just stick with it and the ones on here will encourage and help you.

 

[canary]

Not understanding that you have something wrong with you (anosognosia) is a common symptom of dementia. Mum has never understood that she has Alzheimers. In the early stages she had this feeling that Something is Not Right, but she was not sure exactly what. I wouldnt try and keep telling him what is wrong, I suspect that you will get nowhere.

Take each stage as it comes. With dementia you never know what the future will bring. Sometimes it brings things that you were not expecting, but equally things that you may worry about dont happen, or arnt the problem that you expect.

I do hope that his friend can persuade him to do POA - it saves so many problems later. I think that you might have to "shop" him to the DVLA and insurance. The DVLA wont necessarily stop him from driving (at least, not yet) - they usually give a license that has to be renewed annually.

Although I dont like to over burden people I would like to point out that your dad will be eligible for Attendance Allowance (which is not means tested) and Council Tax exemption.

 

[malengwa]

Hi lucy
I feel your pain. Mum was diagnosed 18 months ago and she still doesn't think anything is wrong, and yet on other days she is very distressed. Trouble is she doesn't know what she doesn't know. She doesn't know that she hasn't eaten today, or she hasn't taken her meds, or hasn't washed for a week.

We had to make mum stop driving because she was getting dangerous, forgetting where she was and going the wrong way up one way streets. We managed to spin it the car costing too much money to run and she accepted that.

We managed to do poa early on, whilst mum still had capacity, we believe she doesn't now, tbh it's something we should all do just as we might make a will.

I wish i'd found this forum sooner, I'm sure talking to others who are walking the same walk helps!

 

[LadyA]

Welcome to TP Lucy.
I would say, take one day at a time. Your dad is exactly the same today as he was before his diagnosis - it's just that now, you have a name for what's going on with him! Life will not really change dramatically immediately. And nor should it. My husband was actually never told he had dementia - his consultant felt he was far too hostile to any mention of it. He knew he had it - everyone did. But it was the elephant in the room, everyone pretended it wasn't there! Thankfully, he didn't drive. It could be that in time, your dad will lose his obsession with finding what's wrong with him and a cure for it. It could be that he really knows - but is grasping at straws, not wanting to accept it. It could be that he can't retain the information of the diagnosis. If you can, just try and distract him - or try and casually put things down to "just one of those things." and maybe suggest a new healthier diet and exercise - going for a walk every day, or whatever?

First things first though - do get the POA done if you can. In fact, maybe you could get it done easier, by making a thing of your sister and you doing one too? TBH, it is, as Malengwa has said, something we all should do - I did one for myself after my husband died, although I'm only 56 and in excellent health.

 

[Moog]

My Mum has 'suspected' vascular dementia. It's the elephant in the room that's never mentioned. She never had the MRI scan to make 100% diagnosis as she was able to refuse but now too anxious to tolerate it. Because Mum was so wary of doctors the Memory Clinic team were able to do the verbal tests in a fabulously gentle way weaving their questions into a "friendly chat" format.

My Dad has Parkinsons which he still doesn't believe he has, even with medication from two hospital consultant opinions based on MRI and he has a home-visiting Parkinsons nurse. He keeps thinking he'll get better or that the tablets should cure him. Or he needs to 'shake it off'. It's a repetitive loop of discussion about it. At this point I just say, 'Keep taking the pills for now, they'll slow it down until a cure comes along and then you'll be fine. There's always something new around the corner with modern science."

With Mum, all health practitioners are forewarned not to mention dementia to her if they want to get the best out of any talks with her. I even have a Note on my phone that I show to opticians, chiropodists, or people unfamiliar with our situation. "Mum has dementia - please do not mention this as it distresses her. Her hearing is fine. Her comprehension of simple commands is good. Thank you ☺️" It'll always be the elephant in the room. So, in reality we just deal with the symptoms as they occur. If her ailments bother her I just say "I know l, comes to us all. We all get a bit creaky."

If your Dad is like mine, he may never accept his diagnosis but if you can get him to comply with medication and continue to eat well and stay fit, that's a good start. Alzheimers itself has had some promising developments recently so new treatments may appear.

Moog x

 

[LucyHP]

Thank You

I just wanted to say thank you to everyone that has replied to my post. It is so reassuring to read about your experiences. canary it was interesting to read that your Mum knew there was something not right - but couldn't say what. Thats exactly how Dad felt. We took him to the doctors and said exactly that!! So sad. Thank you also for the tip about the attendance allowance and council tax!
We've got the social worker coming on Wednesday and also an appointment to sort out POA which will be a relief to get sorted.
I've got my sister to join the forum too - its exactly what we need right now. So thank you for taking the time to reply!