Frontal lobe dementia

[yorkie46]

Hi everyone

I haven't posted for some time as my husband did not have a diagnosis. Battling with his difficulties and waiting for the result of his various tests eventually sent me into a deep depression. Hopefully I am now beginning the recovery process.

Finally on Friday we were given a diagnosis of frontal lobe dementia. This after years of me badgering the medical profession and them repeatedly telling me he doesn't have a dementia and nothing diagnosable. I'm many ways now having a diagnosis is a tremendous relief. I know this sounds strange but it gives me a reason for his behaviour and I can blame the condition and not him.

I will hopefully soon have some support from various agencies but if be extremely grateful for any information fellow carers can give me and any advice about how to cope in the future.

I look forward to hearing from anyone.

 

[yorkie46]

Just realised I put love not lobe!!

 

[Cat27]

I've edited for you @yorkie46.

 

[canary]

Hello @yorkie46 and a sad welcome back again. Unfortunately frontal lobe dementia can take a long time to get diagnosed because the memory is usually intact for later that with other forms of dementia so that they pass the MMSE easily until quite late stages and also, the damage doesnt always show on the MRI in early stages either.

I know exactly what you mean by getting a diagnosis being a relief - its a validation of everything that you knew to be true although no one else would acknowledge it and (as you say) permission to blame something else rather than him.

What sort of FTD does he have? Is it the behavioral variant, or the somantic (speech) one? I seem to remember from your previous posts (yes I do remember you) that its probably behavioral. Advice depends on exactly what symptoms he is now showing, but my main advice would be to secretly take control of the wifi and set the parental controls so that no-one can access sites for pornography, dating, gambling or purchasing drugs. You may think that you will never need to take precautions like this; well I can only say that I didnt either. All these things are a temptation to people with FTD and the filters that say "not a good idea" get damaged. Better to do this before there are any problems

 

[Countryboy]

Hi everyone

I haven't posted for some time as my husband did not have a diagnosis. Battling with his difficulties and waiting for the result of his various tests eventually sent me into a deep depression. Hopefully I am now beginning the recovery process.

Finally on Friday we were given a diagnosis of frontal lobe dementia. This after years of me badgering the medical profession and them repeatedly telling me he doesn't have a dementia and nothing diagnosable. I'm many ways now having a diagnosis is a tremendous relief. I know this sounds strange but it gives me a reason for his behaviour and I can blame the condition and not him.

I will hopefully soon have some support from various agencies but if be extremely grateful for any information fellow carers can give me and any advice about how to cope in the future.

I look forward to hearing from anyone.

Hi FTD I was dignosed with Alzheimers in 1999 like you didnt agree with diagnosis after 3 years I ha a PET scan and a SPECT scan result I was give the diagnosis Front-Temporal- Dementis so I'm almost in my twentith years stil living a active life and keeping above ground

 

[yorkie46]

Hi Countryboy

Pleased to hear you are living well and and a long life.

 

[yorkie46]

Thanks Cat27!

 

[yorkie46]

Hi canary

Yes I remember you too, thanks for your reply.

I wasn't actually given a definitive type but after reading the information I'm assuming behavioural.

Thanks for your suggestions 're internet use, luckily this won't be necessary as he has never used a computer and isn't interested in it. He wouldn't know where to start.

Yes I did read that it is difficult to diagnose, I've been beating my head against the wall for over four years and it was following major heart surgery in 2010 that I started to notice things going wrong. As you say it makes you feel vindicated for everything you've been saying. I'm sure there have been times when people have wondered what I'm worrying about because outwardly he can seem fine to others.

 

[canary]

I'm sure there have been times when people have wondered what I'm worrying about because outwardly he can seem fine to others.

Oh yes, I know that "he looks fine to me" reaction. Even doctors said it

 

[yorkie46]

Hi canary
Yes it's quite frustrating when even the doctors do that.
We We're told that my husband is in the early stages but I really begin to wonder, sometimes I feel he's deteriorating before my eyes. I know everyone's progression with this is different but I'm not sure how to judge what stage he's at and what sort of thing to expect. They're going to start him on some particular antidepressants which they say may help him but if after a while they don't seem to have any noticeable effect there's no point in continuing. I've been told we won't be seen again at the hospital it all seems to fall back to the GP from now on.
I'm going to have a short break with my sister next week because I've been so unwell with depression, everyone says I need it. I'll worry but I have to do it. He can do things for himself at the moment and our daughter will keep an eye and give him some meals. I know there'll probably come a time when it's not so easy.

 

[canary]

The stages of dementia arnt really a good match with FTD, so until you get to the severe stage its difficult to tell. Eventually FTD gets like severe Alzheimers, but it all happens in a different order - things that happen in mid - late stage Alzheimers, like problems with behaviour, decision making, performing tasks and speech tend to happen in FTD in the very early stages, and things like short-term memory and understanding of where/when they are (which is usually lost quite early in Alzheimers) can be preserved in FTD until quite late stages.

The memory clinic often discharges someone back to the GP once a diagnosis has been made, Im afraid.

I think having a break would be a good idea.

 

[yorkie46]

Thanks canary

It's a bit of a minefield really. My husband currently has some of the behaviour issues, short term memory loss and some word finding difficulties. He did however always score fairly well in the mini memory tests. Unfortunately I don't think the medical people always get a true picture because the questions they ask don't really show what the person's functional memory is like. Unless you live with someone these things are difficult to detect and assess.

I wonder if he has traits of Alzheimer's as well and whether he should have been diagnosed as mixed dementia.

These are questions I will ask the Admiral nurses when I eventually meet one but I guess I may never know the answer.

 

[yorkie46]

Can anyone advise whether I should inform my car insurance about a diagnosis of dementia or is it only DVLA. I was not told by the consultant to inform insurance but I do worry a bit about if he drives and has an accident while waiting for a decision from DVLA. Would we be covered?

 

[yorkie46]

I phoned insurance company, they said to advise when we get decision from DVLA, for the moment he's covered by insurance.

 

[yorkie46]

Hi canary
We finally received the copy of letter from the consultant to the GP and very interestingly, as I suspected all along, they are now saying it is ftd, possibly mixed with some vascular aetiology. When I asked about vascular they told me definitely no it was ftd!
I had my few days break which did do me good. Since I came home my husband seems to have deteriorated further. He can't seem to retain much of what I tell him, he's very unwilling to go to any social groups other than one we've undergoing to once a month for a few years. I'm hoping I've persuaded him to go to a Dementia drop in group next Monday which runs fortnightly but he could change his mind. He says he doesn't want other people coming in and doesn't want to socialise, he only wants he'll from me and only wants to go anywhere with me. I've made it clear to him that I need help from outside people which he's accepted. He says he knows I had something wrong with me but thinks I'm ok now, he doesn't seem to remember it was depression.
While I was really unwell we were living in ready meals because I couldn't deal with cooking. Since I came home I have cooked a meal every day but a couple of days ago he said he'd be glad when we could get away from ready meals. I told him we hadn't been having ready meals, it really hurt me that he hadn't realised I'd been cooking. Unfortunately this led to him and me becoming very upset. He said I'm always getting cross with him, I tried to explain I'm not cross with him it's the dementia I'm cross with. He started saying he hates it and wishes he was dead. He only says these things when he's upset but it's hard to hear and deal with. I feel I'm biting my tongue all the time and have to be so careful what I say and how I say it.
Any advice?

 

[canary]

Hi @yorkie46 at least you now know what you are up against. Mixed dementia is very common - having a vascular element will probably mean that the progression will go in steps, and it sounds like there has been a step recently.

Once someones memory is only very short-term it is pointless telling them about things too far in advance - it tends to just make them anxious as they know something is happening, but they cant remember what or when it is. There also comes a time when you have to change from asking what they would like and enabling their wishes, to just getting on and sorting out their needs. Most people with dementia lose empathy and have no idea of the effect that their dementia has on their carers. None of them want other people coming in or them going somewhere with someone else and they have no idea that this causes hardship for their carer. I think you have reached the stage where you will just have to get on and sort things out without consulting him. Get carers or befrienders in under the guise of them helping you, or introduce them as someone you know who has come for a visit. Once he accepts them you could "pop out to the shops for a few minutes". Go together to dementia cafes (and dont mention the D word - its just a coffee morning) or arrange day care and call it his club - you can go with him a couple of times until he gets used to it. You have to be sneaky, unfortunately, because with dementia if you ask them if they want something, or will agree to it the default answer is usually no.

 

[yorkie46]

Hi canary
Thank you for your advice. I do feel there has been a step change. Went to our usual monthly memory cafe today. It's in a very good care home but sadly we are the only non residents who attend these days, used to be a group of us. Today they were playing bingo but he didn't want to join in so we say in a lounge and chatted to the manager. I always feel bad that we take up so much of her time, she always says it's ok. He likes talking to get because she is South African and we had several holidays in Cape Town so he has something to talk about. She's very good but I feel he should be encouraged to join in. He doesn't seem to say away from the D word when he's not upset, he's happy to tell people. The manager today told him that getting out and talking to people will help to slow down the progress and that there is help available but I don't think he hears these things! I think I have to just take him a day at a time and to try not to worry if things don't happen quickly.

 

[yorkie46]

I had a phone call from Admiral nurses today, had a chat about how things are because she knew nothing about the situation. I've arranged to meet her on 22nd which I'm really looking forward to. I have so many questions. She asked me what I was particularly worried about so I told her in concerned that my husband doesn't get out and socialise without me which means I get no time at home on my own. She said I was unlikely to be able to change this as it's typical of ftd. She said there's only so many times you can bang your head against the wall before you have a headache. So it looks like I'm stuck with it. The other thing I find really difficult at the moment is that I have my five year old grandson twice a week after school and it's like having two children in the house. They bicker about everything. If A gets loud my husband turns the volume in tv up. He won't try to play with.it listen to A. I've tried to talk to A about it but he doesn't understand and I can't talk to my husband about it because that would cause an argument! Can't win really. Such a shame because he can't enjoy A like he used to do. Seems that's the way it goes. Does anyone know if with ft d sufferers ever reach the happily confused stage?

 

[Philbo]

Hi@yorkie46

My wife was diagnosed with FTD almost 5 years ago. Her speech, self awareness and cognitive abilities were affected even in these early stages, so she has long lost the capability of interacting with our 3 grandchildren. This was particularly upsetting with the birth of our only granddaughter, as my wife had longed for a girl in the family, us having 2 sons.

The problem is that no 2 people with FTD are the same, so I can only relate how my wife has progressed. From the early frustrated, angry and argumentative stages, she quickly retreated into her own happy little world (thankfully). The downside to that is that she is now reliant on me to do everything for her (like many on here I know). On the plus side, if I sit her on the loo, she stays there until I check on her - the downside is that if I get distracted and forget she's there, she'd be there forever!

At least with her being so happy and "compliant", she willingly goes to a dementia activity morning each week and attends a day centre once a week also. I hope I'm not tempting fate but we are also able to join our great bunch of friends in out local pub each weekend.

I hope things improve for you both too.

Best wishes
Phil

 

[Spamar]

When OH was late stages mixed dementia, he would stay in the bathroom til I came to find him because he didn’t know where to go next. we lived in a bungalow, one corridor front to back, so it’s really difficult to imagine the mindset. But you just have to do it! He also forgot how to switch on the shower taps and later, how to switch them off. I’m listening for the water to stop running and it didn’t!