Undiagnosed Dementia. Its so hard to know what to do.

Oscar 10

Registered User
Nov 3, 2023
21
0
Why not go ahead and get your own Power of Attorney done, making sure you have someone you trust other/as well as your husband as attorneys. Same with your Will, both could/will be useful/ necessary in the future. If he sees that you have it it could push him to do the same. Another option is to talk to friends and get them to say how useful or important LPAs are and how they are getting them done or already have them.
Are you really confident that your husband is still a safe driver? If he has been diagnosed with some form of dementia then he should have informed his insurance company, if he hasn’t then his insurance could be null and void and he is driving illegally. If you share insurance then that affects you too!
I asked my daughter for help with the poa and we completed it between us but my husband has to sign it as well and every time I get it out to discuss it he says what do we need this for and refuses to even talk about it and now when I try to start the conversation he changes the subject I just feel like giving up with the whole thing some days I wonder if I am going completely mad with the worry of it all but thank you for responding I really appreciate any support
 

Sue1303

New member
Dec 17, 2023
9
0
Hi Sue from another Sue I was just reading your story and it’s very similar to mine my husband was diagnosed last April after one years wait to see the memory clinic the delivery of the diagnosis was very poor and to the point she said I’m sorry but you have vascular Alzheimer’s and you can’t drive anymore we came out of the surgery and I asked my husband about what she said and he replied she’s talking rubbish she doesn’t know me and I’m not going to stop driving he has driven since he was 17 he started with a hgv license and had been a black cab driver in London for more that 40 years After retiring in 2014 he’s 73 and a year after this diagnosis it’s like it never happened I have really struggled with this diagnosis asking myself did I do the right thing last year it seems he refuses to acknowledge the diagnosis like it never happened or maybe it didn’t for him we have been together for 50 years and this is the first time I have felt totally alone and not know what to do I’m being told we need to put things in place but for some reason I just can’t seem to do this I’m struggling every day I don’t feel confident leaving him at home as I don’t know what he will do next I am so tearful all the time and I know I am failing at every step we argue and he’s cross with me for telling him what to do then forgets about it I feel so alone with this awful disease I’m so sorry to have gone on and on about my journey when I was trying to talk about your journey xx
Hi Sue, It is really hard isnt it. I think we can only do our best and no matter who tries to help we are the ones there 24/7. We are the ones who see the changes day by day. But we have to find space to look after ourselves. I have just been to see my GP for help and he was lovely. Talk to people, dont do this alone. You will feel alone, as I do often, but talking to people really helps. Be kind to yourself. Remember he cant process thoughts the same way he used to and might not even notice when you are sad. But we know. Having the diagnosis at least takes away the doubt, even though i know my OH has dementia, without the diagnosis, i can still question myself. sending much love. Take care of yourself too. XX
 

Oscar 10

Registered User
Nov 3, 2023
21
0
Yes Sue it is really hard unfortunately my doctors closed last year so I now have a new surgery which is completely overwhelmed with new patients I have tried to speak to them but since the receptionist now asks why you need an appt when I try to explain they decide it’s not urgent and they make it weeks ahead and by that time I either forget about it or feel bad taking up their time now if I do get to see a doctor it’s for minutes and they start by saying have you informed the dvla yet if it’s so important why don’t they do it it’s not fair giving me this responsibility I have enough to deal with without all the anger that I have made his life impossible now i will still need to drive so he will just take my car his driving is fine but i always drive if we go out if I thought his driving was unsafe I would deal with it then but at the moment its just something in the background another issue on top of all my others I’m sorry to go on but each day seems harder than the last take care and take each day at a time x
 

ChaceSoto

Registered User
Apr 2, 2024
33
0
Caring for a loved one with dementia can be extremely difficult, both emotionally and physically. Stubbornness and denial on the part of the patient are often common signs of disease progression. This may be caused by fear, shame, or simply an unwillingness to face reality.
 

Sarah R

New member
Apr 16, 2024
1
0
My husband was diagnosed in July 2023 after a couple of years of things not being right. He still absolutely thinks there is nothing wrong with him. We had the not driving arguements (he hasnt driven since July) but now he doesnt even mention it.
If the word Alzheimers is said in his hearing he gets very cross saying why are they saying that there is nothing wrong with me.
Some days he is reasonably ok, and I can still go out and leave him, although often he hasnt eaten if I have been out at a meal time. He struggles with the TV control so just has it on whatever channel I have left for him.
At one time he would have been ringing me asking me things but now he doesnt know how to use his phone so he doesnt "pester" me.
He tries to be helpful but even the easiest of jobs he doesnt understand or know where something is or asks questions galore and I end up losing it with him.
I would just go ahead and do the POA and Wills - get him to sign things and he will most likely forget he has done. We had actually done our POA's through solicitors before he got diagnosed but my friend is doing them online and says it is very easy. I contacted the DVLA and they did actually issue him his licence in October for a year, but I refused to let him drive as I wasnt prepared to take the responsibility. He would never go anywhere on his own anyway so if we are together then I am driving.
I have struggled with every step of the way but gradually got used to each thing. He has absolutely no idea how much we have in the bank, how to speak to anybody on the phone. pay bills or even what bills we have to pay.
All he can do is take our old dog for a 10 minute walk and load the dishwasher or wash pots - and even then only if he sees me doing it first.
We argue over nearly everything, the only time we dont is if we are sitting watching TV and I dont speak to him. He tells me off for shouting at him and for telling him what to do.
I better stop as I could go on forever :(
You describe a similar situation to mine,I could almost have written this myself. Husband diagnosed with Alzheimer's in January this,year. We are currently intermittently going through the driving issue. Most of the time,he is happy for me to drive but then out of the blue gets annoyed and says he will drive as there is nothing wrong with him. So far,I have managed to distract him away from the idea. I had to inform the DVLA because he is in denial about his diagnosis but told him that the doctor has done it as I knew he may blame me for the fact he should not drive. He is definitely more argumentative than he used to be.We are still awaiting a decision from them. He also has problems with the TV remote . No one day is the same and every day brings challenges.
 

Gosling

Volunteer Host
Aug 2, 2022
1,980
0
South West UK
You describe a similar situation to mine,I could almost have written this myself. Husband diagnosed with Alzheimer's in January this,year. We are currently intermittently going through the driving issue. Most of the time,he is happy for me to drive but then out of the blue gets annoyed and says he will drive as there is nothing wrong with him. So far,I have managed to distract him away from the idea. I had to inform the DVLA because he is in denial about his diagnosis but told him that the doctor has done it as I knew he may blame me for the fact he should not drive. He is definitely more argumentative than he used to be.We are still awaiting a decision from them. He also has problems with the TV remote . No one day is the same and every day brings challenges.
Hello @Sarah R and firstly welcome to this friendly and supportive forum. There is a lot of shared experience of dementia to be found here and members really do want to help.

I am sorry to read of your husband's recent diagnosis. It's tough, even if you were half expecting it. The driving issue is something that often comes up on this forum, and is a very sensitive issue , whether it is with a person with dementia or not. I am attaching a link which you may find useful for information:
 

BeeBeeDee

Registered User
Apr 19, 2023
131
0
The driving issue is a big one and it took me quite a while for me to make the decision that he shouldnt be driving. At his diagnosis in July he was told he mustnt drive until the DVLA said it was ok. In October he got a year long license - this was after a phone call with the Dr - questions like do you fall over, do you get dizzy, do you take drugs, do you drink excessively all of which the answer was No, hence his license was given back. He received it in the post a couple of days before we were going on holiday so I told him I would speak to the Insurance people once we got back. I ummed and ahhed for a couple more months (he had mostly forgotten his license had been returned). We both had a car and his Insurance was due just after Christmas so I knew I had to make a decision before then. I spoke about it to a few friends and family and then one day I heard myself saying all the reasons I thought he shouldnt drive and I had a light bulb moment of why are you even considering letting him drive.
1. I wouldnt want anyone else in the car with him
2, I would be worried about him everytime he went out
3. I would be worried about the other drivers and people out and about
4. Where would he actually go to on his own - possibly the local shops for some milk or bread but that would be all.
5. He wouldnt be able to speak on the phone to explain any of it to the Insurance company so how could I justify that he would be safe to drive a car.

So I got in touch with a friend who has a car sales showroom and arranged to take his car to him. The whole 20 minute journey he complained about his car going etc etc. We handed the keys over and our friend got one of his staff to give us a lift back home, as we drove away I said It is sad leaving your car there isnt it and my husband said Well What do we need 2 cars for why is it sad !!!!!!!!!!!!!!!! A couple of weeks later a similar car to his parked next to us in a car park and I thought aloud "I wonder if your car has sold" and he said "What car" I said your old one and he said "I don't remember having a car, when did I have one".
It was mentioned once or twice how he had driven for over 50 years and there was nothing wrong with him but probably since January he never ever says a word about driving.
 

Oscar 10

Registered User
Nov 3, 2023
21
0
Hi there I agree this is a really hard decision to make and I’m not sure why the memory clinic and the doctors don’t inform the dvla after a diagnosis but unfortunately in my husbands case I was informed it was my responsibility to inform them and it feels like just another thing that’s landed on my shoulders along with everything else to do with horrible disease we did have a doctors appt in nov and after going in to see the doctor who said to my husband do you get lost when you go out do you leave the gas on ?? When we left the practice my husband was furious with me saying what was he going on about I’m not going there again and that’s where we are at the moment it’s so difficult to speak to anyone about where we are at the moment my husband gets angry if I try to talk to him about this he’s been on medication for a year there seems no follow up that can show it’s not getting better or worse and as the memory clinic has passed him back to the doctors I don’t know who to speak to about anything I feel like I wake up and think I will be better today at dealing with this but I never am 😢😢
 

Postmill

Registered User
Apr 5, 2024
17
0
We didnt sign up for all this did we - so so sad that this is what our lives have become
It’s like I have just written what you have posted, my life is just the same at the moment and this situation where my husband is in complete denial that there is nothing wrong baffles me. He has an appointment with neurological doctor next week after months of not seeing him and is stressing so much about it. He says he doesn’t like the doctor and says he’s not doing any more tests. They think he’s got Frontotemporal Dementia, he ticks all the boxes, there is no doubt in my mind it is what he has. Trouble is he puts on a good show for the doctors and tells them what a great social life he is leading, and that he is out all the time with friends. I do take him out when I Can but it’s far from enjoyable as his mobility is awful and he refuses any walking aid. He does have a walker but hates using it. Sleeps most of the time and has no interest in anything. Accuses me of everything that goes wrong and thinks I am plotting against him, then apologises in the same breath. Crazy!
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,321
0
High Peak
I’m not sure why the memory clinic and the doctors don’t inform the dvla after a diagnosis
Some do, some don't. You do realise that if you don't inform the DVLA, your husband's insurance will be invalid? Please do it and please don't let him drive anymore. The day before a person with dementia gets lost or has an accident, they were perfectly OK to drive...

the memory clinic has passed him back to the doctors
This is what normally happens.

Regarding setting up LPAs and Wills, I'd suggest subterfuge! Tell him you want to do yours because if you don't have one and something were to happen to you, Social Services would just step in and take over everything. (And no one wants that!) Tell him he wouldn't have any say in what happens to you. (Which is sort of true.) Or say that Martin Lewis (or anyone else he trusts) says everyone over 50 should get it done. (Also true!)
 

BeeBeeDee

Registered User
Apr 19, 2023
131
0
Regarding the Power of Attorney - tell him if you don't have one then Social Services will make all the decisions about what happens to him and he will probaby like them alot less than the decisions you would make.
 

Oscar 10

Registered User
Nov 3, 2023
21
0
Hi all thank you for your comments I am at the moment working on stopping him driving I decided to tell him his car will not be ulez friendly next month and we will have to pay £12.50 per day to use the car so we will have to sell it and he said we are not selling my car but I will try to keep up the conversation in the next few days I know he won’t be able to check this as he doesn’t use computers or his phone for me it’s little steps in the right direction if I just inform dvla he will ignore their decision if the car is not here he will eventually accept he doesn’t drive he will be angry with me but I will just have to put up with his anger I’m feeling a little stronger so the poa is something I’m hoping to tackle very soon but I’m wondering as he’s had this diagnosis how will I get it certified ?