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

[Sue1303]

Hi All. I hope you are well and im sending lots of love to you all. My husband is 73 and has been exhibiting signs of Dementia for 4 years. The past year has been the most eventful. In September last year he managed to travel abroad for our Daughters wedding and he was really happy. But since then its been hard to get him to do anything. We recently went to America, i took him so he could spend time with hes siblings. Again he did really well. But since we came back 3 weeks ago he is sleeping most of the day, I cant get him to do anything and he gets anxious and angry if i encourage him too much. He refuses to go to the GP and has no insight into hes deterioration or behaviour. He is a kind and giving man and it is breaking my heart to see him like this. He needs my support for everything personal and life management etc. Im struggling with not knowing where he is with this disease, how long i will have him. I feel he is in the middle stages but at times worry he is actually in the later stages.
I guess im asking if anyone has experienced a stubborn spouse who refuses to discuss potential diagnosis and how they managed it. Im feeling completely overwhelmed and sad and find it hard to be positive about anything, though im trying. I cry all the time, get angry, throw things. you name it. Going to see my GP again to discuss. Thanks in advance for any ideas you may have. Sue

 

[sapphire turner]

Hi Sue I think getting a diagnosis will be helpful for you, tho it won’t help much in knowing how things will be going forward. It is really hard to cope with the uncertainty.
My situation is very similar to yours. I wrote to our GP three years ago describing my husband’s change in behaviour, and eventually he was invited in for a check up. That quickly led to a general diagnosis of dementia, and a referral to the local dementia service. Since then he has had several trials of medication with mixed results, and a more detailed Alzheimer’s diagnosis from the neurology consultant.
The main benefit of the diagnosis for me has been to know that I am not imagining things (one for everyone who says “well he seems okay to me”)
The worst thing initially was him being told he couldn’t drive anymore, he was very angry and blamed me for dobbing him in.
My mental health deteriorated last year and eventually I moved to the spare room and stopped having any physical relations with him. He is still very angry about that.
He can still step up his behaviour to quite normal for a party or holiday but he is exhausted for days afterwards. Generally he does very little, sleeps badly at night, naps in the day. I tried for ages to engage him in new hobbies but I have pretty much given up now and let him do what he wants. I am trying to look after myself better so I can be here for the long run. I have become more confident and self reliant in running the household and managing household crises.
Try to get a diagnosis, sort out your finances, LPOA etc, and take one day at a time. This forum is so helpful if you need any particular advice.
Sending love and all best wishes ❤️

 

[Obismama]

In a very similar r boat with my dad. He has my mum, but she is old and frail, has just had a hip replacement. He refuses a gp appointment. I think he is afraid. I'm trying to help them as much as I can be we live 100 miles apart.
Sorry, no solution for you. Just know there's a few of us out here.

 

[Sue1303]

Hi Sue I think getting a diagnosis will be helpful for you, tho it won’t help much in knowing how things will be going forward. It is really hard to cope with the uncertainty.
My situation is very similar to yours. I wrote to our GP three years ago describing my husband’s change in behaviour, and eventually he was invited in for a check up. That quickly led to a general diagnosis of dementia, and a referral to the local dementia service. Since then he has had several trials of medication with mixed results, and a more detailed Alzheimer’s diagnosis from the neurology consultant.
The main benefit of the diagnosis for me has been to know that I am not imagining things (one for everyone who says “well he seems okay to me”)
The worst thing initially was him being told he couldn’t drive anymore, he was very angry and blamed me for dobbing him in.
My mental health deteriorated last year and eventually I moved to the spare room and stopped having any physical relations with him. He is still very angry about that.
He can still step up his behaviour to quite normal for a party or holiday but he is exhausted for days afterwards. Generally he does very little, sleeps badly at night, naps in the day. I tried for ages to engage him in new hobbies but I have pretty much given up now and let him do what he wants. I am trying to look after myself better so I can be here for the long run. I have become more confident and self reliant in running the household and managing household crises.
Try to get a diagnosis, sort out your finances, LPOA etc, and take one day at a time. This forum is so helpful if you need any particular advice.
Sending love and all best wishes ❤️

Dear Sapphire,
You are so kind to reply. Im in the same position now where my mental health is really suffering. Yesterday I coud not stop crying. I know it is grief and its part of this awful disease gift to us twice over, but like you im trying to keep strong physically and mentally so im taking steps to do that. Im giving myself a break for a few weeks in terms of getting the diagnosis but your description of people's reaction is spot on as my hubby can put a good show on for a short period of time. I know its dementia but I also need the diagnosis as im constantly questioning myself and my motives. Feel like im completely lost but its because I want to de everything right but I need to accept a lot of this is out of my control. Thank you once again. Lots of love. Sue

 

[Sue1303]

In a very similar r boat with my dad. He has my mum, but she is old and frail, has just had a hip replacement. He refuses a gp appointment. I think he is afraid. I'm trying to help them as much as I can be we live 100 miles apart.
Sorry, no solution for you. Just know there's a few of us out here.

Thank you for your reply Obismama,
Fear will be a big part of it. I know it is with my hubby, Just keep yourself well and see how things go.
Lots of Love.
Sue xxx

 

[northumbrian_k]

Hi @Sue1303 and welcome to Dementia Support Forum our friendly and helpful community of people who have experience of many aspects of dementia.

I am sorry to hear about your husband. Many of us have been in a similar position. Getting a diagnosis can be one of the biggest challenges. It took almost 2 years from my early retirement to getting my wife to go to the GP and then the memory clinic. I did not have to write to her doctor as by then they were used to me accompanying my wife to appointments. It took an overnight stay in hospital for an injury for me to get the momentum for a follow-up GP visit - double length pre-booked by me in order to allow for a memory test 'while you are here'. To be fair, my wife was as good as me at recalling a few words but she was unable to draw a clock (part of the test).

She was referred to the memory clinic. A few months later, just before our trip to New York, her Alzheimer's Disease was confirmed. She spent the holiday telling me that we were in Gateshead. She was prescribed medication and discharged from the memory clinic back to her GP (who we never saw again).

Left to ourselves, I made arrangements for assessment by social services, Power of Attorney and Attendance Allowance. Later on I arranged a carer/befriender, a few unsuccessful day centre visits, some short respite stays and finally - when I could not meet her needs - permanent care home admission. That was 3 years after her diagnosis. Five years on my wife's dementia is advanced but she seems content in her care home.

Some of the above might be relevant to your situation. You'll find a lot of support via this Forum as well as some informative guidance at the link below:

Print and online publications about dementia: Full list

Here, you will find our full list of publications that you can download or order as printed copies.

www.alzheimers.org.uk

 

[cymbid]

just out of interest (as we havnt taken mum for a test yet) What are the tests . I see above "Draw a clock" What are the others

 

[sapphire turner]

There are a few standard tests, repeating back a name and address (immediately and later on), counting back from 100 in 7s, what day, month, year it is, copying a drawing, sequencing numbers and letters (A1B2C3 etc)
Some of these I would have struggled with, but the clock face was very telling- plus my husband having no idea of the day/month/ year. He keeps up a good impression of normality and these tests really upset him.

 

[Fugs]

My wife cheated on that test. There was a clock with the time, date, day and month on the wall effectively right above the doctors head. My wife gave a great act of thinking and then reading the answers off the wall. 🤣 On the way home she admitted that this is what she had done.

 

[Banjomansmate]

My wife cheated on that test. There was a clock with the time, date, day and month on the wall effectively right above the doctors head. My wife gave a great act of thinking and then reading the answers off the wall. 🤣 On the way home she admitted that this is what she had done.

Do the Drs. think that because you may have some form of dementia that you couldn’t work that one out?

 

[maggie6445]

My wife cheated on that test. There was a clock with the time, date, day and month on the wall effectively right above the doctors head. My wife gave a great act of thinking and then reading the answers off the wall. 🤣 On the way home she admitted that this is what she had done.

AHH. But she had the the ability to think of that at the time. My oh had a clock on the wall where he did the test and he was oblivious to the fact. .
He'd just had his birthday two days before but didn't know his age or the month or date. In fact didn't know the season. It really surprised me as I didn't think he was that bad. 🙁

 

[Banjomansmate]

His inability to draw a clock face was the one that really brought home to me how my Banjoman’s brain was no longer working

 

[Oscar 10]

Hi All. I hope you are well and im sending lots of love to you all. My husband is 73 and has been exhibiting signs of Dementia for 4 years. The past year has been the most eventful. In September last year he managed to travel abroad for our Daughters wedding and he was really happy. But since then its been hard to get him to do anything. We recently went to America, i took him so he could spend time with hes siblings. Again he did really well. But since we came back 3 weeks ago he is sleeping most of the day, I cant get him to do anything and he gets anxious and angry if i encourage him too much. He refuses to go to the GP and has no insight into hes deterioration or behaviour. He is a kind and giving man and it is breaking my heart to see him like this. He needs my support for everything personal and life management etc. Im struggling with not knowing where he is with this disease, how long i will have him. I feel he is in the middle stages but at times worry he is actually in the later stages.
I guess im asking if anyone has experienced a stubborn spouse who refuses to discuss potential diagnosis and how they managed it. Im feeling completely overwhelmed and sad and find it hard to be positive about anything, though im trying. I cry all the time, get angry, throw things. you name it. Going to see my GP again to discuss. Thanks in advance for any ideas you may have. Sue

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

 

[SherwoodSue]

Oscar 10. I am so sorry. Your husband is struggling to accept his diagnosis and you are grieving the many you married who is slipping away.

Does your husband still drive?

You need help. Besides here there are groups etc that help us carers navigate things to be done and the strong emotions in the early days.

Have you phoned the nurses on the help line ever ?

 

[Oscar 10]

Oscar 10. I am so sorry. Your husband is struggling to accept his diagnosis and you are grieving the many you married who is slipping away.

Does your husband still drive?

You need help. Besides here there are groups etc that help us carers navigate things to be done and the strong emotions in the early days.

Have you phoned the nurses on the help line ever ?

Thank you for responding yes he is still driving and flatly refuses to stop although he doesn’t drive much and I always drive when we go out it seems it is up to me to notify dvla and I refuse to do this if they have made this decision. then it should be up to them to inform the dvla and not me I’m struggling with everything at the moment and when I try to talk to him about power of attorney and wills he says why do we need them and refuses to discuss this any further I really feel out of my depth with this

 

[Oscar 10]

Thank you for responding yes he is still driving and flatly refuses to stop although he doesn’t drive much and I always drive when we go out it seems it is up to me to notify dvla and I refuse to do this if they have made this decision. then it should be up to them to inform the dvla and not me I’m struggling with everything at the moment and when I try to talk to him about power of attorney and wills he says why do we need them and refuses to discuss this any further I really feel out of my depth with this

 

[Banjomansmate]

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!

 

[BeeBeeDee]

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

 

[Oscar 10]

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

Thanks for responding your journey sounds just like mine I don’t even like to go out as I never know what he will try to repair he can’t work the tv either a friend takes him golf one day in the week it amazes me that he can still play and know what he’s doing but I have no patience at the moment I know all the consequences of him still driving thankfully he doesn’t drive much and I think I will just leave it as it causes too much aggregation if I try to talk to him about it I’m struggling with my own mental health maybe when i feel stronger I will be able to get on with this journey and deal with it better I wish I could say some days are better than others but they are not 😢😢

 

[BeeBeeDee]

Thanks for responding your journey sounds just like mine I don’t even like to go out as I never know what he will try to repair he can’t work the tv either a friend takes him golf one day in the week it amazes me that he can still play and know what he’s doing but I have no patience at the moment I know all the consequences of him still driving thankfully he doesn’t drive much and I think I will just leave it as it causes too much aggregation if I try to talk to him about it I’m struggling with my own mental health maybe when i feel stronger I will be able to get on with this journey and deal with it better I wish I could say some days are better than others but they are not 😢😢

We didnt sign up for all this did we - so so sad that this is what our lives have become