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Scared every time he goes out

angelhugs

Registered User
Jan 12, 2019
44
My husband still goes into “work” every day, he can’t let go. I say “work” because it’s his business and he doesn’t need to be there. I understand this need for normality but as I am the only person aware of his diagnosis it scares me every time he goes out alone. He is driving and I know how bad he is. He’s ok with the same routes but it’s still so worrying. When he is with me he looks to me all the time for guidance and I basically cover for him constantly. I can’t imagine what he is like talking about business stuff in work, because I am basically his brain! I just try to switch off but it’s hard. He won’t listen to me and makes bad decisions. I try to tell myself I should enjoy my time as I know it’s inevitable it won’t last but I still worry constantly. I’ve heard him on the phone and he talks nonsense but you wouldn’t know anything was wrong if you met him for the first time. I hate the thought of him looking stupid to people in his business, I just feel naturally protective. I’m battling in my head all the time. Some days I can’t wait for him to go but then I worry 🤦‍♀️ I feel guilty then in case something happens. Should I just enjoy my time while I can? His medication will be getting increased next week so I will probably be worrying more 😩 There is normally a counselling service provided after diagnosis in our Memory Clinic but it didn’t happen because of the lockdown. I think he could have done with it too, so hard to hear that word Dementia even though we already knew.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,789
Kent
I hate the thought of him looking stupid to people in his business,
Is there someone you trust in your husband`s business @angelhugs who you could have a word with in conficence?. Perhaps your husband is showing more signs of confusion than you realise and his colleagues don`t know what to do.

When I used to be a passenger with my husband in the earlier stages, he made many mistakes. His spatial awareness was compromised so he damaged many wing mirrors and his parking and reversing were inaccurate, to say the least. Please don`t risk your husband being the cause of an accident. I understand how protective of him you are but it must be very worrying.

When my father started with dementia, it was friends of my parents who plucked up the courage to mention their concerns to my mother. My mother hadn`t noticed and I put it down to the intimacy of the relationship in the same way you don`t notice your children growing until others make comments.
 

canary

Registered User
Feb 25, 2014
13,420
South coast
Hi @angelhugs
It wouldnt surprise me if most people at work are already aware of his problems and have worked out the diagnosis for themselves. I know it will feel disloyal to tell them the diagnosis, but it may actually make things better for your husband if you confide in one or two strategic people.

The driving concerns me. If his driving is so bad that you are worried about it then he could end up injuring or even killing another road user (or even pedestrian). Dementia is one of those conditions that it is mandatory to tell DVLA. You can contact DVLA and report your concerns anonymously. They will not automatically disqualify him, but will investigate this and probably send him for various tests.

I know you want to retain the illusion of normality, but with dementia, reality gets further and further away and you have to learn to embrace the "new normal"
 

Helena HP

New member
Jun 10, 2019
3
It’s a terrible dilemma the aping gap between wanting to be loyal and doing the right thing.

My father’s driving was becoming erratic. He misjudged distances causing minor damages to the car, made snap decisions, couldn’t remember where he was driving to and yet had loved driving all his life. In the end it was me who pushed my family into taking the car away and yes I felt like a traitor but it was absolutely the right thing to do. He just missed a cyclist and it was so close. Don’t be guilty. Be brave.
 

Lemondrizzle

Registered User
Aug 26, 2018
76
I could almost wonder if you are the wife of my former employer. It was so obvious to staff that something was very wrong and with hindsight perhaps I should have approached his wife. For a variety of reasons I gave up work anyway although his personality changes contributed to mt decision.
 

RosettaT

Registered User
Sep 9, 2018
509
Mid Lincs
Oh @angelhugs, I could have written your post 3yrs ago. When first diagnosed I said we needed to tell people but my OH asked me not too, he said there is nothing they can do. Out of loyalty I too covered for him, friends would ring and I would go upstairs to speak with them and make excuses, he was in the garden, gone to the shop or he was in the shower. I drove myself into the ground and almost had a breakdown. It wasn't until he was hospitalised I finally told friends. The relief was overwhelming. They all stood by us and I was sorry I didn't trust them enough to break the loyalty I had toward my OH. I still feel guilty about it even now but what I learnt was you can't do it alone, the stress of covering becomes unbearable. You matter too.
 
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Florencefennel

Registered User
Jun 11, 2018
40
Rosetta, that must have been so hard on you but I can understand why anyone would try and protect their loved ones from being misunderstood by others who will treat them differently. My partner was diagnosed 21/2 years ago with Frontotemporal dementia which was a shock to both of us. At the time I decided that we should be open about it so that it would be recognised as an illness so now everyone in our lives is aware of his dementia....however, there is another side to this which I am now beginning to notice. As well as friends and family tending to talk to me and not include him, he often gets up after a few minutes and disappears into another room to look at his Ipad.
I wonder which is worse...people knowing and treating him differently and him avoiding contact because of the efforts he has to make ....or.....no one knowing and just you having the worry of trying to create a ‘normal ‘ life when life is far from normal.
We just do our best with very little knowledge and take comfort from this forum where we know there are always likeminded souls.
 

canary

Registered User
Feb 25, 2014
13,420
South coast
he often gets up after a few minutes and disappears into another room to look at his Ipad.
This seems to be a "thing" with FTD. OH spends all his day sitting alone in the conservatory with his android. When the children come over they would include him in the conversation, but he couldnt follow it properly and just got up and went somewhere else - usually with his android. He also gets stimulus overload so if he thinks everything is getting too noisy he will either get annoyed with it, or just get up and go.
 

Florencefennel

Registered User
Jun 11, 2018
40
This seems to be a "thing" with FTD. OH spends all his day sitting alone in the conservatory with his android. When the children come over they would include him in the conversation, but he couldnt follow it properly and just got up and went somewhere else - usually with his android. He also gets stimulus overload so if he thinks everything is getting too noisy he will either get annoyed with it, or just get up and go.
Yes, Canary, this is so familiar to me, when my daughter and son in law came over yesterday he immediately disappeared off onto his I-pad. As this semi lockdown continues, I’m beginning to feel continually guilty about his solitary life...every morning I wonder where we can go to stimulate him when really I am quite content to work in the garden, do some therapeutic cooking and walk my cockerpoo on my own so she and I can have bonding time! How selfish does that sound as I write it down?! Perhaps I should re read the ‘Selfish Pig guide’?
My partner seems happier left to his own devices and says he would rather live on his own but I guess that may be because of the effort it takes him to be part of the normal life of our home, I try hard with the compassionate communication (I think that’s right) and don’t make too many demands on him but I never feel satisfied that I’ve done a good job at the end of the day!
 

TNJJ

Registered User
May 7, 2019
1,731
cornwall
Yes, Canary, this is so familiar to me, when my daughter and son in law came over yesterday he immediately disappeared off onto his I-pad. As this semi lockdown continues, I’m beginning to feel continually guilty about his solitary life...every morning I wonder where we can go to stimulate him when really I am quite content to work in the garden, do some therapeutic cooking and walk my cockerpoo on my own so she and I can have bonding time! How selfish does that sound as I write it down?! Perhaps I should re read the ‘Selfish Pig guide’?
My partner seems happier left to his own devices and says he would rather live on his own but I guess that may be because of the effort it takes him to be part of the normal life of our home, I try hard with the compassionate communication (I think that’s right) and don’t make too many demands on him but I never feel satisfied that I’ve done a good job at the end of the day!
I feel the same with dad. I go over to his two or three times a week and cook him a meal . Walk him to the dining room and then wheel him into the conservatory. I make sure he has plenty to drink etc. On those days I put him to bed and don’t have any carers in so he can go to bed later.I ry and give him a “normal “ life as possible but can only do so much with his VD.
 

canary

Registered User
Feb 25, 2014
13,420
South coast
I’m beginning to feel continually guilty about his solitary life...every morning I wonder where we can go to stimulate him
I know that there is a lot of advice about "stimulating" people with dementia, but it is not the be all and end all. People with FTD often have real problems with social interaction, especially if there is more than one person. When OH is in a group his eyes glaze over and you can almost see his brain grinding to a halt - it is too much for him. Constantly forcing him to be more social would actually be counter productive. If we go out somewhere he likes to go where there arent many people - to a nature reserve for instance - and then (like a lot of people with dementia) likes to go for coffee and cake. Things that are often recommended for people with dementia, like Singing For The Brain, he hates with a passion. Mostly though, he just wants to stay at home, in silence, with his android :rolleyes:
 

Sirena

Registered User
Feb 27, 2018
2,287
I agree with @canary that there is no need to try to find things to stimulate someone with dementia.

My mother has Alzheimers rather than FTD, but it was noticeable that when she moved to her care home her anxiety disappeared and she relaxed. She no longer had to make the huge effort to keep up with 'normal life', to pretend she was following a conversation or remember who people were. At the care home there are no unexpected events to try to unravel, there are no demands made of her and she likes the predictable routine. So if you let your husband have his solitude, it sounds like you're doing a pretty good job.
 

RosettaT

Registered User
Sep 9, 2018
509
Mid Lincs
My OH has Alz and is perfectly happy to sit and vegetate as I call it. Sometimes he likes to read a magazine sometimes he likes to watch tv bt much of the time he is in his own little world think of goodness knows what but is happy and content to sit and do nothing.
 

Florencefennel

Registered User
Jun 11, 2018
40
I wish I’d spoken about my worries before, because, having read your posts, I can understand that I don’t need to beat myself up trying to be a Butlin’s redcoat! My OH also rejects any group sessions, Canary, I’ve ended up singing on a Zoom session while he disappeared and the art class was a hoot...I painted a pretty good elephant but then thought...why am I doing this alone? No wonder he says he wants to live alone...it must be exhausting living with me!
 

big l

Registered User
Aug 15, 2015
43
Things came to a head with my husband's driving when he drove into the front of the house. He insisted he'd skidded - our drive is uphill -and did £5,000 worth of damage to the house and the car! Fortunately nobody was hurt. I knew then - sorry - that I had to act, and went to see his doctor. He supported me to have moh's licence revoked. Unfortunately having a diagnosis of dementia doesn't remove culpability. You must act. Think how you'd feel f he had, or caused an accident? The business bit is trickier, really because you know it's the beginning of inevitable things to come. Stay brave - the horrible shock of confirmation of what you already new will wear off and you'll set out on the rocky road. Keep coming on this website there's support by the truck load. It keeps you sane!
 

angelhugs

Registered User
Jan 12, 2019
44
Hi everyone,
Thank you all so much for your replies, I don’t feel so alone now. I haven’t posted for a few weeks as when I do have time on my own I am exhausted. Good news the Doctor from the memory clinic brought up informing the DVLA so it was taken out of my hands. I couldn’t bring it up because I would have got the blame if he loses his license. The next step I need to approach him about is informing our insurance 😩 He lets me drive the car most of the time now. His awareness when driving is good but it’s his spatial awareness...parking 🙈 His van he goes to work in looks like something from Wacky Races! I would speak to someone in his business but to be honest there isn’t anybody I would trust. I just make sure he has all the information he needs every day to prevent him looking stupid. That is what drains me. Last year he told the Memory Doctor he was running three businesses alone and he believed him and wouldn’t give him a diagnosis and treatment because of it. The business would have been bankrupt now if I hadn’t stepped in 🤦‍♀️ I know he won’t be able to carry on like this but while he can do it I will have to leave him. The Doctor did say keep to the same routine. It’s just the worry when he is out alone. I feel guilty for enjoying the time he is out because anything could happen but I can’t control him. I know it won’t last forever so I am just making the most of it...does that make me a bad person? His medication is being increased from next week to10mg Donepizal. He hasn’t been back at work properly since starting medication because of the lockdown but things are starting to open up again...business is a late bar. Saturday nights he was coming home at 5am. I can’t tell him because he won’t listen but it’s not going to do his brain any good losing sleep like that while also being on new medication. Oh well maybe I can get the Doctor to tell him. Giving in means he is admitting something is wrong with him doesn’t it 🤦‍♀️ Love and hugs to everyone xxx
 

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