Picks Disease
- Thread starter Beeb
- Start date
Hello and welcome to TP.
I'm sorry to hear about your wife's diagnosis. I have no personal experience of Pick's a Disease as my husband has Alzheimer's. I'm sure others will be along to share their experiences with you. I wondered if this fact sheet would be of any interest. I hope I'm right in thinking that Pick's disease is another name for Fronto Temporal Lobe Dementia.
https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=167
This is a link to another thread where people are discussing it.
http://forum.alzheimers.org.uk/showthread.php?58170-Fronto-Temporal-Dementia-at-63
I'm sorry to hear about your wife's diagnosis. I have no personal experience of Pick's a Disease as my husband has Alzheimer's. I'm sure others will be along to share their experiences with you. I wondered if this fact sheet would be of any interest. I hope I'm right in thinking that Pick's disease is another name for Fronto Temporal Lobe Dementia.
https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=167
This is a link to another thread where people are discussing it.
http://forum.alzheimers.org.uk/showthread.php?58170-Fronto-Temporal-Dementia-at-63
Hello Beeb
a warm welcome to TP - you've discovered a really good place to come and air your concerns and share your experiences - there are lots of sympathetic and knowledgeable people here to offer support
your wife is a fortunate woman to have such a loving husband caring for her - it can feel overwhelming at times, though, can't it
I hope you are getting some support from your Local Authority Adult Services, you are entitled to an assessment of your wife's care needs and a Carer's Assessment to help you too - maybe, if you can both get out and about, there is a carer's café local to you where you can have a chat with others in a similar situation - and please do talk with your GP about you as well as your wife, you matter just as much
have you come across this flyer on compassionate communication?
http://www.ocagingservicescollaborative.org/wp-content/uploads/2013/03/Compassionate-Communication-with-the-Memory-Impaired.pdf
it gave me quite a few ideas for when I wasn't sure what I was doing
I don't have any experience of Pick's either - dad had Alzheimer's and Parkinson's - but I've gained a lot of confidence just reading threads about how others cope
do post again to let us know how you are
best wishes
a warm welcome to TP - you've discovered a really good place to come and air your concerns and share your experiences - there are lots of sympathetic and knowledgeable people here to offer support
your wife is a fortunate woman to have such a loving husband caring for her - it can feel overwhelming at times, though, can't it
I hope you are getting some support from your Local Authority Adult Services, you are entitled to an assessment of your wife's care needs and a Carer's Assessment to help you too - maybe, if you can both get out and about, there is a carer's café local to you where you can have a chat with others in a similar situation - and please do talk with your GP about you as well as your wife, you matter just as much
have you come across this flyer on compassionate communication?
http://www.ocagingservicescollaborative.org/wp-content/uploads/2013/03/Compassionate-Communication-with-the-Memory-Impaired.pdf
it gave me quite a few ideas for when I wasn't sure what I was doing
I don't have any experience of Pick's either - dad had Alzheimer's and Parkinson's - but I've gained a lot of confidence just reading threads about how others cope
do post again to let us know how you are
best wishes
Hi Beeb,
My husband has FTD, semantic variant. He was diagnosed 1 and a half years ago. I understand how you feel, I feel like I don't know what is going to happen next with the moods or lack of logic, yet he can still physically get around so to challenge is to get him to understand the risks.
I have struggled to find support as the needs for FTD/picks tend to be different, at least at first, than Alzheimer's which a lot of support is based on.
I know it is hard but take care of yourself too, I am trying not very successfully to.
My husband has FTD, semantic variant. He was diagnosed 1 and a half years ago. I understand how you feel, I feel like I don't know what is going to happen next with the moods or lack of logic, yet he can still physically get around so to challenge is to get him to understand the risks.
I have struggled to find support as the needs for FTD/picks tend to be different, at least at first, than Alzheimer's which a lot of support is based on.
I know it is hard but take care of yourself too, I am trying not very successfully to.
Just to add to Shedrechs info about the carers cafe - our carers cafe is a lifeline for many of us - we can share stories, get lots of local info on good and bad services, sometimes we have a speaker but most of all we have face to face friendship and support from others who really understand.
Our carers cafe is run by Crossroads Care and they provide sitters for the person with memory loss/alzheimers and other conditions, if necessary.
You do need a break, you love her to bits but to care well you have to look after you and although I have no direct experience of caring for someone with Pick's I understand from others that it can be very frightening and is very demanding. Your LA will give you a carers assessment and perhaps find some day care for her or give you some sitting hours so that you can have a break. It will all be your choice but they can be very helpful. Phone your local adult care services duty desk.
If you aren't already you should be getting the higher rate Attendance Allowance (not means tested ) and a quick call to Age UK to ask for help with checking you have all you are entitled to and they will send someone to help you with the tricky forms 0800 169 2081 - they have lots of other info too.
Keep posting, lots of support on here
xx
Our carers cafe is run by Crossroads Care and they provide sitters for the person with memory loss/alzheimers and other conditions, if necessary.
You do need a break, you love her to bits but to care well you have to look after you and although I have no direct experience of caring for someone with Pick's I understand from others that it can be very frightening and is very demanding. Your LA will give you a carers assessment and perhaps find some day care for her or give you some sitting hours so that you can have a break. It will all be your choice but they can be very helpful. Phone your local adult care services duty desk.
If you aren't already you should be getting the higher rate Attendance Allowance (not means tested ) and a quick call to Age UK to ask for help with checking you have all you are entitled to and they will send someone to help you with the tricky forms 0800 169 2081 - they have lots of other info too.
Keep posting, lots of support on here
xx
Hi Beeb, I really feel for you, I understand that FTD can be a challenge but I can't offer you any direct support, other than to suggest that it is very important for you to make contact with other FTD carers, particularly those close to you.
UCL has a Dementia Research Centre which has a national support group for FTD, as well as information on their website. They may be able to suggest a local support group.
If you are lucky, your local memory clinic may provide a local support group. If not, you could try asking them ask them to pass your details on to others so that they could contact you.
FTD may be rare, but I would expect there are several others with FTD within a reasonable distance from you. The challenge is to find them. My wife has PCA, one of the other rare dementias, and we have now managed to find 11 others within a hour of us. I am certain there are many more.
Good luck and keep posting here.
Sent from my iPad using Talking Point
UCL has a Dementia Research Centre which has a national support group for FTD, as well as information on their website. They may be able to suggest a local support group.
If you are lucky, your local memory clinic may provide a local support group. If not, you could try asking them ask them to pass your details on to others so that they could contact you.
FTD may be rare, but I would expect there are several others with FTD within a reasonable distance from you. The challenge is to find them. My wife has PCA, one of the other rare dementias, and we have now managed to find 11 others within a hour of us. I am certain there are many more.
Good luck and keep posting here.
Sent from my iPad using Talking Point
Hi
Thanks for your comments, it is very hard to cope, some of the time my wife is very loving the other times she seems a different person the good times seem to be getting shorter.
She was diagnosed in Feb but looking back I think it has been coming on a long time, she is defiantly getting worse with memory she is still active.
Take Care of your self.
My husband also had a rare dementia and I have had heaps of help from the UCL support groups. The link is www.ucl.ac.uk/drc/support-groups
There is lots of information and contacts you can access.
Tre
There is lots of information and contacts you can access.
Tre
Hi
How the hell do you keep a level head while looking after some with picks disease?
It is constant what time is it where have I put her hand bag, up and down stairs where is this or that. Then when it is bad it is a load of verbal abuse constant, I just want to walk out but when its your wife and the one you love you can't, I have shred so many tears at times I don't know what to do.
Beeb.
How the hell do you keep a level head while looking after some with picks disease?
It is constant what time is it where have I put her hand bag, up and down stairs where is this or that. Then when it is bad it is a load of verbal abuse constant, I just want to walk out but when its your wife and the one you love you can't, I have shred so many tears at times I don't know what to do.
Beeb.
Bless you Beeb, you are having such a hard time! Have you had a chance to get any outside help/input yet? It does sound as if you are in real need 
I agree with you Beeb - my husband also has FTD diagnosed three years ago - no one would think there is a thing wrong with him he looks so good. I am so exhausted I fell asleep this evening at six thirty of course the minute he woke up he woke me up too. Just like a small baby wanting constant attention. Take care of yourself - easier said than done I know.
Hi
Picks disease destroys the person and also thru the person destroys the most precious loved ones too.
My wife has picks, we were members of a church which was sacred to her she has turned against them saying the are all crookes. Her attention is now me using very abusive language and saying she whats a divorce.No way I will fight picks right util the end. I will not let it destroy our marriage or my love for my wife.
Beeb
Picks disease destroys the person and also thru the person destroys the most precious loved ones too.
My wife has picks, we were members of a church which was sacred to her she has turned against them saying the are all crookes. Her attention is now me using very abusive language and saying she whats a divorce.No way I will fight picks right util the end. I will not let it destroy our marriage or my love for my wife.
Beeb
I agree it's one of the most difficult diseases to cope with. There is hardly any help out there for carers you have children at home. My daughter is 3 and I've told doctors and social services I can't cope with his agression or feel safe. They won't listen and I'm at a loss on what to do now.
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