Frontal Lobe Dementia - Recent Changes and No Support

[Decaff]

I was diagnosed last year with Frontal Lobe Dementia by my psychiatrist during a hospitalisation for bipolar.
I am 64 yrs old and live alone with no f..amily here in Scotland and am not close to any of those living in England.

I have had very little support or input from anyone since my diagnosis. Recently my language has become very aggressive and intemperate - shouting and swearing through a closed window a parked cars outside my home for example. Today I threw a tub of chocolate desert and a milkshake at a wall while swearing at my CPN as I stomped off to lock myself in the toilet and refused to talk to her or come out until she'd gone. Childish I know but I was really angry with her.

Nobody talks about my diagnosis, offers me any input or even seems to monitor how it is progressing.

My recent change really worries me. My personal hygiene started deteriorating a couple of years ago. At least now if I don't shower daily I use baby wipes and deodorant.

What am I supposed to do? Any suggestions.

 

[Cat27]

Welcome to TP

Could you show your CPN or GP what you’ve wrote here?

 

[Shedrech]

hello @Decaff welcome to TP
I am saddened that you do not feel you are being listened to and supported
I do think Cat27's idea is a good one - you have expressed yourself very clearly in your post, so maybe writing out your concerns in a journal and showing that to your CPN may be a way to share your experience and also give her a chance to take in your worries without needing to question you on the spot - I've never reacted well to having to talk face to face and give instant responses, when I want time to think, so the calmness of writing out your thoughts and then the CPN reading may help you both communicate

I've also just been looking at useful websites in Scotland, as your systems are different from those in England - so here are some links, not sure how useful they will be
http://www.ageuk.org.uk/scotland/

http://www.alzscot.org/
http://www.careinfoscotland.scot/

https://beta.gov.scot/news/new-dementia-strategy-unveiled/
http://www.gov.scot/Topics/Health/S...pport/Older-People/Free-Personal-Nursing-Care
http://www.gov.scot/Resource/Doc/347702/0115819.pdf

might you add Scotland as your location on your profile as we do have other members living there and they may have knowledge more specific to the systems there

 

[Clare bear]

I was diagnosed last year with Frontal Lobe Dementia by my psychiatrist during a hospitalisation for bipolar.
I am 64 yrs old and live alone with no f..amily here in Scotland and am not close to any of those living in England.

I have had very little support or input from anyone since my diagnosis. Recently my language has become very aggressive and intemperate - shouting and swearing through a closed window a parked cars outside my home for example. Today I threw a tub of chocolate desert and a milkshake at a wall while swearing at my CPN as I stomped off to lock myself in the toilet and refused to talk to her or come out until she'd gone. Childish I know but I was really angry with her.

Nobody talks about my diagnosis, offers me any input or even seems to monitor how it is progressing.

My recent change really worries me. My personal hygiene started deteriorating a couple of years ago. At least now if I don't shower daily I use baby wipes and deodorant.

What am I supposed to do? Any suggestions.

I can't offer any advice although I can partially understand. I have early onset alzheimers. Why is it that showering is a problem? I'm the same, it's so strange isn't it. I live in South Wales and I am getting lots of support from the professionals but family have been dreadful and the hubby has just jumped ship so in a few years I think I will be alone also. Are there any support groups locally that you can get to? I wish you all the best. Clare x

 

[Molly64]

So sorry you feel so alone. Im getting a sense of frustration with the level of support you are getting. Iv no advice really but can identify. Iv recently lost a lot of my memories and an having a hard time with basic maths and reading. My hygiene is also not what it was but for me i was a bit OCD about it before. Iv a few mental health diagnosis as well.
I also find my emotions are erratic and i want to act out like a child.
I dont know if you use Facebook but there is a support group on there its called alzhimers and dementia patients helping patients.
I hope you get some support. Just know you are not alone in your struggle. I to have little support. X

 

[Putford]

Sorry to hear about your situation, My mother has the same symptoms and is on a section 2 at the moment after a breakdown and overdose.
She’s got shrinkage on her frontal lobes, the psychologist explained that it’s the part of the brain that controls emotions, judgement, social behaviour, memory, language etc. My mum struggles with all of those things.
Have you had a brain scan? Are there any local groups that you could go to such as social or hobby groups? Even getting out of the house and having a chat will help. Maybe ask the CPN for local support groups.
Sorry I can’t offer any more help.

 

[Countryboy]

Hi Decaff sorry to hear you have issues I’m not sure if I can help or confuse you. also although I joined Talking Point in March 2005 I haven’t written or reply to any post for a couple of years like you I have frontal-temporal-dementia I was diagnosed with Alzheimer’s in 1999 my age then was 57 although I knew I had problems my brain was very active and after several heated discussions with my Psychiatrists I was sent for a Single Photon Emission Tomography Brain HMPAO Brain Scan in January 2003 and a further Brain Cerebral Perfusion Scan March 2004 the report from scans said Sever damage to the front-temporal-lobes obviously my diagnoses was change to FTD. I will try to answer some of your concerns separately based on my own experiences.
Decaff (1) I have had very little support or input from anyone since my diagnosis, (T) I was very fortunate I was assigned an Occupational Therapist at my first Psychiatrists consolation in 1999 her words then I can’t have a 57 year old giving up work and with her support I continued to work for a further 8 years difficult because I worked a government organization where I came into contact with the public but work until my retirement age 65.
Decaff (2) my language has become very aggressive and intemperate - shouting and swearing. (T) Yes this has been a nightmare for me as well unfortunately swearing is frustration in a conversation because you can’t find the words even though you brain knows exactly what you should say.
Decaff (3) Childish I know but I was really angry. (T) Yes again been here several times upset a lot of people can we control this Well I never could myself “ hopefully you will”
Decaff (4) Nobody talks about my diagnosis, offers me any input or even seems to monitor how it is progressing . (T) After my retirement the support from Occupational Therapist went down to two home visits a year mainly because my G.P needed reports from Mental Health Clinic for my medication. This has change again to a West Complex Care and Dementia Team and I’m lucky if I hear from them once a year.
Decaff (5) What am I supposed to do? Any suggestions. (T) Decaff this is very difficult because were all different albeit with same Illness Personally apart from being 18 years older now I feel No different mentally than when this all started my health declined in other areas but that’s ageing , all I can say is try not to put pressure on yourself or ( don’t beat yourself up over things you unfortunately wont be able to control ) Remember your FTD yes may decline but its not life threatening .

Keep you chin up and feel free to message me privately anytime if difficult to read well blame FTD
Tony

 

[Decaff]

Thank you all for your replies. I have been trying to reply but finding it very difficult technically although I manage on other websites. I don't even know if I am replying to you all now - this space just opened up allowing me to type so I am taking the opportunity to do so - and yes I have read all the help on posting and watched the help video on youtube but it has made no difference.

My CPN on leaving the day I locked myself in the bathroom said she was going to phone my psychiatrist as if threatening to phone the police because she knows I have a fear of landing in hospital again. I told her it was okay because I was seeing my psychiatrist in a couple of weeks with no-one in attendance as they usually are so that I could talk to her privately about some of my complaints without embarrassing her in front of junior staff members. She returned the next day and I didn't open the door to her - again childish I know- she put a note through the door saying she would return the next day so I phoned her and made a definite appointment time to see her.
When she arrived she said she and the psychiatrist agreed that I was obviously unwell which I felt implied I needed hospitalisation. At one point during her visit I adjusted my watchstrap on my arm and she said - look you are agitated you are rubbing your arm - which I chose to ignore.

After I posted here I made a decision to find out as much about support in my area as possible and have made at least one quite useful contact and also had a lengthy conversation with the woman on the dementia Scotland helpline. I had ordered lots of literature from this website but it mainly pertained to England and Wales so had to find out what was available to me here in Scotland.

I have found all your replies very helpful and supportive and for the first time since my diagnosis actually felt as though somebody understood and cared what I was going through. I am moved beyond words can express adequately so I will just say 'Thank You'.

 

[Clare bear]

Thank you all for your replies. I have been trying to reply but finding it very difficult technically although I manage on other websites. I don't even know if I am replying to you all now - this space just opened up allowing me to type so I am taking the opportunity to do so - and yes I have read all the help on posting and watched the help video on youtube but it has made no difference.

My CPN on leaving the day I locked myself in the bathroom said she was going to phone my psychiatrist as if threatening to phone the police because she knows I have a fear of landing in hospital again. I told her it was okay because I was seeing my psychiatrist in a couple of weeks with no-one in attendance as they usually are so that I could talk to her privately about some of my complaints without embarrassing her in front of junior staff members. She returned the next day and I didn't open the door to her - again childish I know- she put a note through the door saying she would return the next day so I phoned her and made a definite appointment time to see her.
When she arrived she said she and the psychiatrist agreed that I was obviously unwell which I felt implied I needed hospitalisation. At one point during her visit I adjusted my watchstrap on my arm and she said - look you are agitated you are rubbing your arm - which I chose to ignore.

After I posted here I made a decision to find out as much about support in my area as possible and have made at least one quite useful contact and also had a lengthy conversation with the woman on the dementia Scotland helpline. I had ordered lots of literature from this website but it mainly pertained to England and Wales so had to find out what was available to me here in Scotland.

I have found all your replies very helpful and supportive and for the first time since my diagnosis actually felt as though somebody understood and cared what I was going through. I am moved beyond words can express adequately so I will just say 'Thank You'.

I'm typing this and not sure if anyone can see it, I'm so glad that I am not the only one who has difficulty using this site but not others, that doesn't seem right does it??!! I'm so glad to see you are feeling better and getting some useful contacts. It's really hard for me to be finding my own help, like you seem to be doing. I get sent lists of local groups and activities but they don't seem to understand that getting there would be very difficult for me and arranging it, going in alone, not getting lost etc it's a minefield isn't it. All the best, I'm glad you are on here. Clare

 

[Cat27]

I'm typing this and not sure if anyone can see it, I'm so glad that I am not the only one who has difficulty using this site but not others, that doesn't seem right does it??!! I'm so glad to see you are feeling better and getting some useful contacts. It's really hard for me to be finding my own help, like you seem to be doing. I get sent lists of local groups and activities but they don't seem to understand that getting there would be very difficult for me and arranging it, going in alone, not getting lost etc it's a minefield isn't it. All the best, I'm glad you are on here. Clare

@Clare bear I see what you’re saying.