Unsure if Dad has Dementia

[oddsock05]

Hello -

I find this really hard to write. We are having increasing issues with my Dad that we keep going back and forth on whether or not it is dementia and we're getting really concerned. He has had basic 'memory tests' at the doctor but these have been on better days and fairly basic.

- Obsessions with things - Locks, security, taking keys to bed, money, news - but on very specific strange things that he seems to become enamoured with and 'hiding things' (I've not seen this bit but heard from a sibling and I can believe it)
- Convinced himself numerous times my mum is having an affair and followed her, confronts her and I think has tried to put tracking on her. She's now resigned to the fact she can't even go to the supermarket without him for fear of him starting. He won't allow her to go anywhere without him. FYI - they have been married over 60 yrs.
- Can seem absolutely fine one day and with it and then can literally 'go' mid-sentence and then it's like you can't get him back. Can't follow his thoughts. Contradicts things he's previously said and doesn't make any cognitive sense.
- He's fine at points and very aware he's got some issues and doesn't want to drive because he doesn't feel capable (gets lost, makes bad decisions), wants help with banking because he can't do it etc and then the next second he will get frustrated and almost agressive that he absolutely can drive, or bank, or do whatever he wants and no-one will stop him.
- He's diabetic and you can't get him to understand and not keep eating extra cakes, sweets etc. You find him putting extra bits in and he becomes very childlike about it and you don't seem to be able to get through. He does this 'child like' behaviour with other things as well.
- Has had numerous 'funny turns' over the past 18 months where he ends up hospitalised but showing no underlying issue. He can pass out, unable to recall anything or know where he is (.e.g. fully dressed at 3am eating breakfast at the table), looks drunk when walking and at points couldn't use legs at all
- Sleep issues, wandering around in the middle of the night
- Impulse issues - suddenly making expensive purchases, going off on a seconds notice, needs everything 'now' and can't understand if something has to wait
- Seems to upset people everywhere he goes by thinking it's them that's incompetent - .e.g. bank, solicitors, garages, gardeners anyone! He was previously a very astute business man and doesn't understand that he's not making sense or thinks he's asked for something that he hasn't.

Day to day it's getting worse. He can seem absolutely fine on some days but that seems to be becoming less frequent. My mum is becoming very despondent and doesn't know what to do. She doesn't feel able to carry on like this. She is very competent and able but she's having to placate him and watch him most of the time. He gets angry if people confront him about it but we are starting to feel he isn't safe. Siblings and I are all seeing strange things at different points. Mum talks about it but I think she still hides some things. We don't know what to think. I'm worried it's escalating and some of his impulses really concern me.

It can be like talking to a different person a day apart. How do we actually go about getting a diagnosis? And how do you deal with that with someone who doesn't want the diagnosis? From research, I feel as though Lewy Body makes the most sense for what we're seeing but I'm not sure.

I think we are all burying our heads in the sand atm and we can't keep doing that. Any advice?
Thank you!

 

[Louise7]

Hello @oddsock05 and welcome, it's not surprising that you and your siblings are concerned about your parents, it must be such a worry, but you will find understanding and support here. Much of what you have posted about your dad and his behaviour could be symptoms of dementia but other health issues would need to be ruled out too. For example, it is not typical for someone with dementia to keep passing out, so a full medical examination with blood tests etc may need to be considered before a dementia diagnosis can be confirmed. The factsheet below explains the diagnosis process, which can take some time. If your dad will not go back to his doctor, and your mum won't contact them herself, then you could provide the doctor with a list of your concerns, similar to what you have posted above, including the impact on his diabetes and the risks of your dad driving, and let them know that you are worried that things are escalating. It may also be useful for you to contact the Dementia Support Line to talk through your concerns as they are very helpful in terms of advice and support:

Dementia Support Line

If you need dementia support, we’re here for you. Get personalised information, support and advice by calling us on 0333 150 3456.

www.alzheimers.org.uk

How to get a dementia diagnosis

The dementia diagnosis process can be different for everyone. This page describes the typical steps involved in getting a diagnosis.

www.alzheimers.org.uk

 

[Johnmc65]

Hello -

I find this really hard to write. We are having increasing issues with my Dad that we keep going back and forth on whether or not it is dementia and we're getting really concerned. He has had basic 'memory tests' at the doctor but these have been on better days and fairly basic.

- Obsessions with things - Locks, security, taking keys to bed, money, news - but on very specific strange things that he seems to become enamoured with and 'hiding things' (I've not seen this bit but heard from a sibling and I can believe it)
- Convinced himself numerous times my mum is having an affair and followed her, confronts her and I think has tried to put tracking on her. She's now resigned to the fact she can't even go to the supermarket without him for fear of him starting. He won't allow her to go anywhere without him. FYI - they have been married over 60 yrs.
- Can seem absolutely fine one day and with it and then can literally 'go' mid-sentence and then it's like you can't get him back. Can't follow his thoughts. Contradicts things he's previously said and doesn't make any cognitive sense.
- He's fine at points and very aware he's got some issues and doesn't want to drive because he doesn't feel capable (gets lost, makes bad decisions), wants help with banking because he can't do it etc and then the next second he will get frustrated and almost agressive that he absolutely can drive, or bank, or do whatever he wants and no-one will stop him.
- He's diabetic and you can't get him to understand and not keep eating extra cakes, sweets etc. You find him putting extra bits in and he becomes very childlike about it and you don't seem to be able to get through. He does this 'child like' behaviour with other things as well.
- Has had numerous 'funny turns' over the past 18 months where he ends up hospitalised but showing no underlying issue. He can pass out, unable to recall anything or know where he is (.e.g. fully dressed at 3am eating breakfast at the table), looks drunk when walking and at points couldn't use legs at all
- Sleep issues, wandering around in the middle of the night
- Impulse issues - suddenly making expensive purchases, going off on a seconds notice, needs everything 'now' and can't understand if something has to wait
- Seems to upset people everywhere he goes by thinking it's them that's incompetent - .e.g. bank, solicitors, garages, gardeners anyone! He was previously a very astute business man and doesn't understand that he's not making sense or thinks he's asked for something that he hasn't.

Day to day it's getting worse. He can seem absolutely fine on some days but that seems to be becoming less frequent. My mum is becoming very despondent and doesn't know what to do. She doesn't feel able to carry on like this. She is very competent and able but she's having to placate him and watch him most of the time. He gets angry if people confront him about it but we are starting to feel he isn't safe. Siblings and I are all seeing strange things at different points. Mum talks about it but I think she still hides some things. We don't know what to think. I'm worried it's escalating and some of his impulses really concern me.

It can be like talking to a different person a day apart. How do we actually go about getting a diagnosis? And how do you deal with that with someone who doesn't want the diagnosis? From research, I feel as though Lewy Body makes the most sense for what we're seeing but I'm not sure.

I think we are all burying our heads in the sand atm and we can't keep doing that. Any advice?
Thank you!

Hi I actually got a diagnosis of vascular dementia had the one year post diagnosis support then I got memory test year later the psychiatrist I seen was so rude said he would never give me that diagnosis but give me cognitive diagnosis doesn’t matter to be honest in my opinion it’s the same thing

 

[SeaSwallow]

Hi I actually got a diagnosis of vascular dementia had the one year post diagnosis support then I got memory test year later the psychiatrist I seen was so rude said he would never give me that diagnosis but give me cognitive diagnosis doesn’t matter to be honest in my opinion it’s the same thing

@Johnmc65 I am so sorry that the psychiatrist was rude to you. That was totally uncalled for.

 

[Johnmc65]

Hi I actually got a diagnosis of vascular dementia had the one year post diagnosis support then I got memory test year later the psychiatrist I seen was so rude said he would never give me that diagnosis but give me cognitive diagnosis doesn’t matter to be honest in my opinion it’s the same thing

All I’m trying to say is it’s so hard to get the diagnosis and help you need sorry if if I don’t make sense

 

[SeaSwallow]

All I’m trying to say is it’s so hard to get the diagnosis and help you need sorry if if I don’t make sense

You made perfect sense.

 

[1235]

I would suggest trying to get him to the doctor by telling him it’s just a yearly checkup or whatever works. Keep it low key relaxed no pressure. I would not point out all the problems you are seeing that will just upset him. Before the doctor appointment I would contact the doctor. If he doesn’t have a patient portal setup I would set one up for him then you have accessible to everything. If the portal doesn’t work I would bring a note for the doctor to the office a few days before the appointment. Explain everything that is going on. While he is at the doctors office I would see if you can get him to sign a hippa form( I’m not sure I would even tell him what you are having him sign if you think it will be a problem). I hope you find something that works.