Husband is showing signs of dementia. I'm not coping and feel like walking away

[Sarlizzie]

Please accept my apologies if this comes out as verbal diarrhoea, I had intended talking to the doctor today but I haven't been able to get an appointment and I don't know where else to go.

My husband is 58 and I think he is showing signs of dementia. I managed to convince him to go to the doctors but he passed the initial test that they do and so said they weren't going to refer him to the memory clinic, they did send him for an MRI scan which didn't show anything up.

I started to notice little things about 2 years ago, he started forgetting conversations that we'd had and kept forgetting how to get to places which led to him loosing confidence in driving. I am now at a point where other members of my family have noticed. We don't have conversations anymore, he spends all evening asking me what shift I am doing the next day, what time do i finish, what time do i start. He has worked as an electrician since he left school at 16 but has been forced to stop because he can't understand diagrams that he is given, he sees the pictures but he can't make sense of what they mean. He struggles to follow the satnav now and often asks me if I will drive because he doesn't know the way. There are a lot of things that I notice that seem really silly but I know its not like him, he drove through a carpark in 1st gear and didn't notice until I mentioned it, reacting weirdly to situations, showing little concern or not getting excited. We have recently had a couple of incidents where he turns very aggressive suddenly, most recently he went for a group of boys who were misbehaving outside my workplace, he grabbed one boy by the throat which resulted in a visit from the police. He has also had a couple of incidents where he either gets very disorientated or confused at home or he completely over reacts to things eg I was late home from work one night last week and he accused me of being with someone else.

I am really struggling with the way things are with at him at the moment, I feel like walking away from everything but then I feel guilty because I don't think he would cope on his own and I can't leave my children to deal with it. Has anyone else had a similar experience? Does it sound like some kind of dementia or am I just over thinking it? He is diabetic, has had 2 strokes and his Dad has got Alzheimers which had led to him being sectioned. Any advice or ideas of support would be very gratefully received.

 

[Unsure2021]

Hi sarlizzie,

I can't offer advice as such as I'm in a similar position to you, I noticed silly little things with my OH 5 yrs ago,he refuses to admit anything is wrong and refuses to go to the GP,he is also young only 46.

Just wanted to say hello and that you have come to the best place as I have found everyone so friendly and helpful here.

I have found that you can vent away to your heart's content here with no judgement.

 

[silkiest]

Hi @Sarlizzie, this must be a worrying time for you. I have no answers, only questions - but they may give you some ideas of things to ask the GP.
You need to go back to the GP and give them a very clear idea of what he is like. Maybe keep a diary from now on or make a list with all the information you have given us. Did your GP know he has had to stop work as he no longer understands things that were his bread and butter? That should be a red flag for further investigations - maybe bloods and a CT scan.
The memory test done in surgery is very basic (Mini mental state test scores out of 30) and does not pick everything up whilst the memory clinic test (The ACE 111 usually) scores out of 100 and it looks at all cognitive aspects.
He does seem a bit up and down - do you have a machine to do random blood sugar tests - both when he is good and when he is not. If glucose levels fluctuate between very high or low it can temporarily affect brain function. Bear in mind someone can have a good HBA1c (average/ long term result) whilst having very variable random readings. If the readings are very erratic maybe ask to be referred to diabetic clinic or a specialist nurse.
He could also be having TIA's - that and his previous strokes could lead to vascular dementia. Has the possibility of this been discussed with the GP?
Also people with diabetes are at greater risk of other auto-immune conditions such as hypothyroidism - do you know if he has had any bloods done recently. Untreated hypothyroidism definitely causes brain fog but this will improve with medication.
If your husband is on metformin, especially if he gets intermittent diarrhoea he can have absorption problems and get anaemia - which also affects brain function.
Did you go to your husbands appointments with him - are you convinced if you didn't that he has remembered everything that was said ? Mum in law insisted everything was ok but years later I found out she had been diagnosed with cognitive impairment but forgot/ didn't understand.
If the GP he saw isn't looking into other possible causes of his changes could you see a different GP in the practice as there is clearly a problem, even if they haven't yet come up with a cause.
Sorry this is such a long post, I hope it gives you some ideas of possible ways forward.

 

[Sarasa]

Hi @Sarlizzie I agree to keeping a diary of things that concern you for a week or so and then try and get another appointment with the GP, one to which you also go. My mum was a lot older than your husband when we first became concerned,
The GP wasn't at first as mum passed the mini-memory test, but the real worry wasn't her memory, but the inappropriate reaction to things and her false belief that the neighbours were entering her house and stealing things. When I got mum to talk about that in front of the GP he sat up and took notice.
There are other things that can mimic dementia so it would be a good idea to get him back to the GP to rule those either in or out.
This is a very friendly forum and you'll get loads of support here.

 

[Jaded'n'faded]

I'm no medic but I've been reading/posting on this forum for years. (My mum died from dementia in 2019.) What you are describing sounds very dementia-like. However, as your husband is young there may be other causes so you must get him to the doctor. (E.g. vitamin deficiency can cause dementia-like symptoms and is easily sorted.) I think at this point it will be a case of discounting everything else it could be first.

GPs are not always good at recognising dementia and it's harder when they only see the person for 5 minutes. Often the person is able to go into 'host mode' and put on a very convincing, 'Nothing is wrong here!' performance, which is very frustrating when you know that once back home it will be back to all the repeated questions and confusion.

But you know him best. Keep a diary of all the odd/inappropriate behaviour. Make a note of how often he has good days and bad days and try to see if there's a pattern that could relate to his other health issues. Write to his GP expressing your concerns, detailing all the things you are seeing and point to the worsening of symptoms, family history, etc. If other family members have noticed, it's time the GP did too. Ask for a 'well-man' review' or something innocuous if you think your husband would be resistant to further testing.

As for Should I Stay or Should I Go? that's a difficult one and only you can make that decision. It's far more complex because of your children. You don't say how old they are but maybe it's time to have a long discussion with them about what the future holds. (Or maybe wait for a diagnosis!) Dementia + children is never a good mix. I don't live with my boyfriend but if I did and he showed these symptoms, I'd be off like a shot. Sorry if that sounds harsh, unkind or uncaring but it's the truth. Having been through it with my mother, there is no way I'm doing it again with someone else. It was too hard, too harrowing and I'm just not cut out to be a carer. Not everyone is, and dementia is life-changing, not just for the sufferer, but for those around them.

Having said that, many people here have faced exactly what you are going through and have cared for their spouse till the end. They have my total admiration because I couldn't do it.

 

[Violet Jane]

Tell your husband’s GP everything you have told us here, and start keeping a diary. Two things that should certainly make the Gsit up and take notice are:
• your husband has lost his job because he could no longer understand the electrical diagrams that he had been familiar with since he was 16 years old; and
• other people have started noticing the changes in your husband (i.e. it’s not just you)

That Mini Memory Test (i.e. the one which is scored out of 30) is very basic and does not really measure problem solving, which is a feature of everyday life. My mother was quite far gone when she had that test but still managed to score 23 or 24 the first time she was assessed.

It may be that your husband’s symptoms are caused by something other than dementia but until his GP takes the problem seriously and does a proper investigation you won’t know and any necessary treatment can’t be started.

It’s not uncommon for it to take an unreasonably long time for someone to be diagnosed with dementia. In the case of my sister’s MIL, they seemed to go all round the houses before a diagnosis of vascular dementia was finally made and the family was told that she would need full-time care within a year.

 

[Lawson58]

Please accept my apologies if this comes out as verbal diarrhoea, I had intended talking to the doctor today but I haven't been able to get an appointment and I don't know where else to go.

My husband is 58 and I think he is showing signs of dementia. I managed to convince him to go to the doctors but he passed the initial test that they do and so said they weren't going to refer him to the memory clinic, they did send him for an MRI scan which didn't show anything up.

I started to notice little things about 2 years ago, he started forgetting conversations that we'd had and kept forgetting how to get to places which led to him loosing confidence in driving. I am now at a point where other members of my family have noticed. We don't have conversations anymore, he spends all evening asking me what shift I am doing the next day, what time do i finish, what time do i start. He has worked as an electrician since he left school at 16 but has been forced to stop because he can't understand diagrams that he is given, he sees the pictures but he can't make sense of what they mean. He struggles to follow the satnav now and often asks me if I will drive because he doesn't know the way. There are a lot of things that I notice that seem really silly but I know its not like him, he drove through a carpark in 1st gear and didn't notice until I mentioned it, reacting weirdly to situations, showing little concern or not getting excited. We have recently had a couple of incidents where he turns very aggressive suddenly, most recently he went for a group of boys who were misbehaving outside my workplace, he grabbed one boy by the throat which resulted in a visit from the police. He has also had a couple of incidents where he either gets very disorientated or confused at home or he completely over reacts to things eg I was late home from work one night last week and he accused me of being with someone else.

I am really struggling with the way things are with at him at the moment, I feel like walking away from everything but then I feel guilty because I don't think he would cope on his own and I can't leave my children to deal with it. Has anyone else had a similar experience? Does it sound like some kind of dementia or am I just over thinking it? He is diabetic, has had 2 strokes and his Dad has got Alzheimers which had led to him being sectioned. Any advice or ideas of support would be very gratefully received.

My husband was much older than yours when he started showing symptoms and signs that something was very wrong. He was in denial that anything was wrong and it took a long time to finally get a diagnoasis.

So we had three years of war prior to the diagnosis. He was totally paranoid and accused me of all sorts of things, argued with me constantly, lacked empathy and everything was pretty awful. It was finally the destruction of our relationship, in the middle of which he had a cardiac arrest at home and I had to perform CPR to save his life.

We actually got to the point of discussing separation as neither of us was happy. It finally came down to finances and we decided to stick it out. Though now I wish I had left but then I am speaking from hindsight.

Before you make any decision, try your best to get a diagnosis. I have had several episodes of depression, I wish I was doing something else but I do feel that I have the responsibility of caring for my husband. He didn’t want to have Alzheimer’s and he can’t help what he does or how he is.

Making decisions at a time of crisis is totally wrong so you need to take your time and think about what Is going to happen after diagnosis. It may or may not be Alzheimer’s so don’t cross your bridges yet.

 

[Arty-girl]

Get your husband tested for a urine infection too. I know that can cause dementia-like symptoms.