Thanks for letting me join this site. I am viewing frontal lobe dementia from the angle of the "patient". I was diagnosed a couple of months ago. I waited a while for the information to sink in, then started to look for information so I could try to understand what is happening to me. There is a lot of confusing information out there. Reading the symptoms, it keeps saying that memory issues were rare until later in the illness, but that was my first issue(I had pneumonia a couple of years ago following a routine gallbladder operation and collapsed with shortness of breath and I was put in an induced coma for 2 weeks and from the moment I came round I had memory problems. I was 52 years old at the time) I noticed my memory issues, but nothing else. A few months later my husband told me that I was changing, personality wise. Apparently the kids were getting afraid of saying anything to me in case I take their heads off(not literally). I have talked things through with my husband and he has agreed to let me know when and how my behaviour changes, and obviously he has to tell me over and over until I manage to hold on to the information. I don't know if I have done the right thing by telling my doctor that I wanted to know my diagnosis-(there again, a diagnosis of dementia was about the last thing I expected to hear) and knowing that I have FTD and will "lose my mind" feels awful and putting my family has to watch me going through this terrible, terminal illness is so upsetting for me too, as my husband is only 52, and the kids are only 22 and 17. My son says the hardest thing is the knowing..that i'm going to die from this. sometimes I feel it would be better not to be aware of whats happening to me.
concerns from the another angle.
- Thread starter midgit
- Start date
Good morning @midgit and welcome to the forum.
I'm so sorry to read of your diagnosis. It must be terribly hard for you and your family to come terms with all of it.
I know you have already researched the condition but I wondered if you had seen this publication
https://www.alzheimers.org.uk/sites...dementia_ftd_understanding_your_diagnosis.pdf
As well as giving information about the condition it gives advice on planning ahead.
If there is an admiral nurse in your area it might be worth contacting them. You can phone or drop them an email. This is their website - https://www.dementiauk.org/get-support/admiral-nursing/
I'm so glad you have found Talking Point. I know you will get lots of help and support here.
Keep posting.
I'm so sorry to read of your diagnosis. It must be terribly hard for you and your family to come terms with all of it.
I know you have already researched the condition but I wondered if you had seen this publication
https://www.alzheimers.org.uk/sites...dementia_ftd_understanding_your_diagnosis.pdf
As well as giving information about the condition it gives advice on planning ahead.
If there is an admiral nurse in your area it might be worth contacting them. You can phone or drop them an email. This is their website - https://www.dementiauk.org/get-support/admiral-nursing/
I'm so glad you have found Talking Point. I know you will get lots of help and support here.
Keep posting.
Hello again @midgit. I have replied to your post in the welcome thread but now wonder if you have seen the following thread and if you may be interested in it. Just click on this link https://forum.alzheimers.org.uk/thr...tia-anyone-else-dealing-with-it.110795/unread
It is such devastating news for you @midgit.
It`s still very early days for the whole family, so even though the information may have sunk in I'm sure you are all still in shock and feel out of your depth.
All I can hope is by joining Talking Point you will feel able to off load here . No one will be able to make it better for you but you will be offered as much support as possible and be surrounded by people who have learnt to live with dementia, however painful it is.
It`s still very early days for the whole family, so even though the information may have sunk in I'm sure you are all still in shock and feel out of your depth.
All I can hope is by joining Talking Point you will feel able to off load here . No one will be able to make it better for you but you will be offered as much support as possible and be surrounded by people who have learnt to live with dementia, however painful it is.
I am so sorry to hear this @midget - the news must have hit you like a bolt out of the blue.
As for whether you did the right thing in asking your doctor for a diagnosis, we are all different, but in my opinion, yes you did.
My husband was diagnosed when he was 58. Yes, it was a shock, but it was also a huge relief for us too, because he then understood why he had been struggling so much to find work, why things were making less and less sense and stopped thinking of himself as being 'stupid'- It also helped me and our son and daughter to understand what was going on - and knowing that we would be his first line of defence as carers and supporters as things progressed, it gave us the opportunity to find out as much as we could about the disease so that we were as prepared as we could be for what might (or might not) happen. I think if we had carried on as we were, with no knowledge, explanation or understanding of how things had been changing or why, we would not have coped very well.
It also gave us the incentive to put things in place like setting up POA for finance and property ( not for immediate use but for when the time came when my husband would need help managing his money). We also took one for Health and Welfare and made our Wills. Once the paperwork was done we pushed it all aside and went about living out lives as normally as we could - and we had some very good years ahead
I am glad that you have found Talking Point - you will find support and real understanding here because we have all had to live with dementia in one way or another and will be here for you.
As for whether you did the right thing in asking your doctor for a diagnosis, we are all different, but in my opinion, yes you did.
My husband was diagnosed when he was 58. Yes, it was a shock, but it was also a huge relief for us too, because he then understood why he had been struggling so much to find work, why things were making less and less sense and stopped thinking of himself as being 'stupid'- It also helped me and our son and daughter to understand what was going on - and knowing that we would be his first line of defence as carers and supporters as things progressed, it gave us the opportunity to find out as much as we could about the disease so that we were as prepared as we could be for what might (or might not) happen. I think if we had carried on as we were, with no knowledge, explanation or understanding of how things had been changing or why, we would not have coped very well.
It also gave us the incentive to put things in place like setting up POA for finance and property ( not for immediate use but for when the time came when my husband would need help managing his money). We also took one for Health and Welfare and made our Wills. Once the paperwork was done we pushed it all aside and went about living out lives as normally as we could - and we had some very good years ahead
I am glad that you have found Talking Point - you will find support and real understanding here because we have all had to live with dementia in one way or another and will be here for you.
Hi @midgit
Welcome toTP I hope you find it as helpful as I have over the years up to & since my diagnosis. I also have FTD & like you my first problem was my short term memory! I also read that often with FTD your memory is affected in the later stages but it’s different for each of us.
Since then my behaviour has become more of an issue (unpredictable).
I was diagnosed in April this year & would love to keep in contact if you find it helpful.
It sounds awful but it can be such a help having someone who understands to talk with
I hope you’ve met your dementia support worker & have support networks in your home town.
Welcome toTP I hope you find it as helpful as I have over the years up to & since my diagnosis. I also have FTD & like you my first problem was my short term memory! I also read that often with FTD your memory is affected in the later stages but it’s different for each of us.
Since then my behaviour has become more of an issue (unpredictable).
I was diagnosed in April this year & would love to keep in contact if you find it helpful.
It sounds awful but it can be such a help having someone who understands to talk with
I hope you’ve met your dementia support worker & have support networks in your home town.
Hi @midgit , welcome to TP. I am a newbie whose mum has FTD and finding it hard to cope. Lots of lovely, good people on here though who you can offload to - everyone willl listen and help if they can.
@LynneMcV, I really like your attitude, so positive. There are many ways to look at any situation and attitude is all important but obviously very hard to be positive too with FTD/any kind of dementia.
My doctor has agreed to find out about genetic testing for FTD - I want to know if I have it as several family members have died of it. Then I am going to have blast if I have a good chance of inheriting this damn thing. After all, none of us is getting out of it alive...
Best wishes to all xx
@LynneMcV, I really like your attitude, so positive. There are many ways to look at any situation and attitude is all important but obviously very hard to be positive too with FTD/any kind of dementia.
My doctor has agreed to find out about genetic testing for FTD - I want to know if I have it as several family members have died of it. Then I am going to have blast if I have a good chance of inheriting this damn thing. After all, none of us is getting out of it alive...
Best wishes to all xx
Hello and welcome here.
I'm so sorry about your diagnosis - it must be really hard. How very brilliant and brave it is that you are posting here, and I'm so glad that you are being so open about what is happening with your illness. It sounds like your husband is totally on your side and looking out for you.
My MIL hid her husband's dementia from us for several years - she obviously didn't want to bother us (maybe thought that a mental illness was a bit of a taboo?), but it eventually left us devastated in that he was put in a home without anything else being tried. She developed dementia herself and was in total denial of it or was unaware of it- resisted carers or helpers and ended up in a care home and died shortly after. If she could have accepted care in her home, I think she would be with us now.
Carry on being open - you have some time (I don't mean time to climb Everest or trek across a desert....) just time to think and tell your husband what you need. Please don't think that everything that you read on here will happen to you either.
Lots of people with practical experience on here - do keep posting, and keep well. XX
I'm so sorry about your diagnosis - it must be really hard. How very brilliant and brave it is that you are posting here, and I'm so glad that you are being so open about what is happening with your illness. It sounds like your husband is totally on your side and looking out for you.
My MIL hid her husband's dementia from us for several years - she obviously didn't want to bother us (maybe thought that a mental illness was a bit of a taboo?), but it eventually left us devastated in that he was put in a home without anything else being tried. She developed dementia herself and was in total denial of it or was unaware of it- resisted carers or helpers and ended up in a care home and died shortly after. If she could have accepted care in her home, I think she would be with us now.
Carry on being open - you have some time (I don't mean time to climb Everest or trek across a desert....) just time to think and tell your husband what you need. Please don't think that everything that you read on here will happen to you either.
Lots of people with practical experience on here - do keep posting, and keep well. XX
knowing that I have FTD and will "lose my mind" feels awful
midget your obviously letting this diagnoses of FTD is upsetting you and I’m sure looking FTD very negatively I find that worrying because although FTD can differ in people the basics are the same I myself have a diagnoses of FTD in a few months will be twenty years
and I can assure I have never worried about the future and coped well with FTD in 2011to14
I was a member of a Dementia Leadership Group run by the Alzheimer’s Society the group consisted of 8 members all diagnosed with dementia 5 of the group were diagnosed with FTD their ages ranged from 70 to 80 and 6 members still drove themselves to and from the meeting venue some had a return trip of 70+ miles, I’m 76 now and “ my mind is still working fine” well I’m still on TP writing my own replies and I’m still driving with no problems what so ever Obviously as the years go by I will die but it wont be because of FTD so my suggestion to you Stop beating yourself up by looking FTD in a negative way