my husband has been diagnosed with ftd. The Drs and health support people tell me what to do but it is just text book answers and not practical in real life. My husband has shoplifted today, urinated in the garden and ate his food as though I starve him. I need help on how to deal with this. Has anyone had a similar experience and do they have any tips for me as I feel I cannot cope.
anyone with experience of frontal temporal dementia
- Thread starter suediddy
- Start date
Hello @suediddy you are welcome here and I hope you find the forum to be a friendly and supportive place.
I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there
https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list
https://www.alzheimers.org.uk/find-support-near-you
You will see that there are Factsheets that will help with things like the different types of dementia, getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done.
Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there
https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list
https://www.alzheimers.org.uk/find-support-near-you
You will see that there are Factsheets that will help with things like the different types of dementia, getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done.
Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
Hi suediddy - my hubby also diagnosed with FTD last December. He too eats his meals as if it is the last one he is going to have and hangs around the kitchen whilst I cook.
Last year while on holiday in a cottage with a friend he was asking her if she wanted sex with him - several times! She just told him he was confused and he was happy with her reply. Then yesterday he went for newspaper and on way back stopped to speak to my neighbour in her garden and asked her when she wanted to have sex with him. Thankfully she knew about hubby’s illness and texted me to tell me.
This morning I had to lock both back and front door so that he couldn’t go out as he said he was going to see some woman but couldn’t tell me who. He then found a spare key for front door and I just caught him walking down the drive - he came back at my request and let me have the key. He wandered around the house for a while then settled down to read paper on his iphone.
My son has blocked You Tube and Google websites from his phone as he was looking at pornography.
I was at my wits end this morning and not sure what to do but just got on with my ironing. Yes there is lots of information out there - in fact you get inundated and overwhelmed with it after diagnosis - but sometimes you just want to speak to someone “in the know”.
Quite honestly we can’t do anything about our husband’s disinhibition - there are no meds - as it is all part of the illness and sadly you don’t know what they are going to do next. You just need to learn how to handle it and explain the situation to other people. If anyone has any tips I would be grateful.
He has started whistling this past week and it is non stop sometimes !
Last year while on holiday in a cottage with a friend he was asking her if she wanted sex with him - several times! She just told him he was confused and he was happy with her reply. Then yesterday he went for newspaper and on way back stopped to speak to my neighbour in her garden and asked her when she wanted to have sex with him. Thankfully she knew about hubby’s illness and texted me to tell me.
This morning I had to lock both back and front door so that he couldn’t go out as he said he was going to see some woman but couldn’t tell me who. He then found a spare key for front door and I just caught him walking down the drive - he came back at my request and let me have the key. He wandered around the house for a while then settled down to read paper on his iphone.
My son has blocked You Tube and Google websites from his phone as he was looking at pornography.
I was at my wits end this morning and not sure what to do but just got on with my ironing. Yes there is lots of information out there - in fact you get inundated and overwhelmed with it after diagnosis - but sometimes you just want to speak to someone “in the know”.
Quite honestly we can’t do anything about our husband’s disinhibition - there are no meds - as it is all part of the illness and sadly you don’t know what they are going to do next. You just need to learn how to handle it and explain the situation to other people. If anyone has any tips I would be grateful.
He has started whistling this past week and it is non stop sometimes !
Thank you Maggiejigs. My husband also likes looking at nude women. The grandchildren have also asked why grandad is doing this. It is difficult. He has made passes at women but not gone as far as your husband. The food thing drives me mad. He steals food and sweets because he tells everyone I don't give him anything. It is very hard. We have been married 50 years now and I feel so lonely at times because his empathy has gone and even if I cry in front of him he does not see it. Today I think he is frightened about what is happening to him. He watched the dementia choir and kept saying he could see some of the symptoms in him. Next day he denies he has dementia and says there is nothing wrong with him. I cuddle him and say I know he is frightened but he will not talk to me about his feelings. He keeps saying he does not want to lose his marbles. I know my patience runs thin at times especially when he puts washing up liquid and tea on my plants. Thanks for your support. It is very difficult. I find that to outsiders he sees he is friendly and nice but to myself and our two daughters we are the enemy. He cannot drive now but I now have to hide the car keys because twice recently he has driven the car. He keeps saying we are taking everything away from him. I know this but don't know what else to do. The Drs say about day care but I feel guilty. Does your husband go to day care? Do you get a break?
Hope this helps you. You have helped me in that writing back to you had relieved some o the stress. Good luck and love.
Hope this helps you. You have helped me in that writing back to you had relieved some o the stress. Good luck and love.
My OH doesnt have a diagnosis, but has many symptoms of FTD
He too used to watch pornography (till I switched on the parental controls) and I have caught him, um, "fondling" himself in the back garden - which he thought was very funny
. He too loves his sweets, cakes and biscuits, but fortunately does not shoplift them. Does your husband always use the same shop to get his sweets? If so, a ploy Ive seen used is to go and speak to the manager and see if you can set up a "tab" so that you can pay for anything that he steals later.
I will pass on a little tip that was given to me and I find helps. If I say "no" to my OH it is like a red rag to a bull, so I was advised to never say that word. What you do instead is say the word "yes" followed by what you need to say, even if you are actually saying no. Eg - if he says he wants to drive the car you dont say "No, you are not allowed to drive", instead you say "Yes. Unfortunately the DVLA has taken your licence away, so you cant". If he wants to go to the shop NOW, you say "Yes, we can go this afternoon" Its not a magic bullet and its hard to do on the hoof, but I have found it to work much better than I thought it would.
He too used to watch pornography (till I switched on the parental controls) and I have caught him, um, "fondling" himself in the back garden - which he thought was very funny
. He too loves his sweets, cakes and biscuits, but fortunately does not shoplift them. Does your husband always use the same shop to get his sweets? If so, a ploy Ive seen used is to go and speak to the manager and see if you can set up a "tab" so that you can pay for anything that he steals later.I will pass on a little tip that was given to me and I find helps. If I say "no" to my OH it is like a red rag to a bull, so I was advised to never say that word. What you do instead is say the word "yes" followed by what you need to say, even if you are actually saying no. Eg - if he says he wants to drive the car you dont say "No, you are not allowed to drive", instead you say "Yes. Unfortunately the DVLA has taken your licence away, so you cant". If he wants to go to the shop NOW, you say "Yes, we can go this afternoon" Its not a magic bullet and its hard to do on the hoof, but I have found it to work much better than I thought it would.
Thanks for advice Canary. Suediddy my hubby eats sweets too if he can get the chance. I send him with exact money for paper and when he comes home with no paper and no money he says he bought chocolate - but it was white, as if it was not as fattening as milk!! We walk daughter’s dogs three times a week at lunchtime. He has to go back to house sooner because of old dog but I found he was raiding the fridge as daughter keeps sweets in bottom tray. Also he eats her cheese. So now I don’t give him the key to house and he has to wait for me to come back. If it is raining he stands under the porch. Hard I know but he has gone from being a slim man to being a bit tubby and as he is 6’ and I am just over 5’ I need to try and control his weight.
We too have been married 50 years and I know what you mean about the empathy and sympathy, so difficult. My husband was a really caring man but some of that has gone. When I got the text from my neighbour about the sex I was in tears and he just asked me why I was crying but no comfort.
My husband’s problems have been compounded by side effects from radiation treatment for prostate cancer last August. He has intermittent bowel incontinence but we are thinking it could now be caused by anxiety although doc thinks could be combination of radiation proctitis and anxiety. One more test to be done to confirm. Because of this I have not looked at day care although the Alz Society have accepted him but once you sign up you have to pay each week even if you don’t attend. However, if he was to soil himself I believe he couldn’t go any more. Age UK also have a place in town and they accept people with incontinence so might consider that.
Do you have an Alzheimers Society where you live?. We go to their Dementia Cafe but I do all the talking! hubby just sits and smiles, drinks tea and eats cake! I also go to their Carers Support Group - once a month. Only been once so far but found it comforting to meet others going through same thing although have yet to meet someone with OH with FTD.
I found this to be a useful site - http://www.raredementiasupport.org/ - they have support groups around the UK but sadly none in Kent.
Like you I feel relief by either communicating on here or phoning a friend but my daughter gets most of my rant calls and she is brilliant. 1st June I am hoping to go to Monmouth on my own to a family wedding and hubby staying with my daughter. Would prefer him to be in a home for few days but if push came to shove I am not sure he would go and I still need to research what is available in my area.
Have a good weekend xx
We too have been married 50 years and I know what you mean about the empathy and sympathy, so difficult. My husband was a really caring man but some of that has gone. When I got the text from my neighbour about the sex I was in tears and he just asked me why I was crying but no comfort.
My husband’s problems have been compounded by side effects from radiation treatment for prostate cancer last August. He has intermittent bowel incontinence but we are thinking it could now be caused by anxiety although doc thinks could be combination of radiation proctitis and anxiety. One more test to be done to confirm. Because of this I have not looked at day care although the Alz Society have accepted him but once you sign up you have to pay each week even if you don’t attend. However, if he was to soil himself I believe he couldn’t go any more. Age UK also have a place in town and they accept people with incontinence so might consider that.
Do you have an Alzheimers Society where you live?. We go to their Dementia Cafe but I do all the talking! hubby just sits and smiles, drinks tea and eats cake! I also go to their Carers Support Group - once a month. Only been once so far but found it comforting to meet others going through same thing although have yet to meet someone with OH with FTD.
I found this to be a useful site - http://www.raredementiasupport.org/ - they have support groups around the UK but sadly none in Kent.
Like you I feel relief by either communicating on here or phoning a friend but my daughter gets most of my rant calls and she is brilliant. 1st June I am hoping to go to Monmouth on my own to a family wedding and hubby staying with my daughter. Would prefer him to be in a home for few days but if push came to shove I am not sure he would go and I still need to research what is available in my area.
Have a good weekend xx
Well I’m 76 with FTD diagnosed at first with Alzheimer’s then 3 years later FTD at that was Twenty years this coming November But I can assure you I don’t recognise anything related to your thread unfortunately we don’t know the age of your husband this is a major factor in a persons dementia
@suediddy welcome I do hope you find some answers on here . My hubby is 71 and we got our diagnosis of FTD in November last year. I also have had to hide sweets and the car keys . We dont have puddings anymore. I too suspect that he has urinated in our garden (as yet I have not caught him )
When asked by people about his dementia and what he is like I tell them it's like having a child of about 5 . You cant say NO but can reason most days .
People say give him some space and stop telling him what to do all the time but in our life this works .
We find a calm and quite life helps .
When asked by people about his dementia and what he is like I tell them it's like having a child of about 5 . You cant say NO but can reason most days .
People say give him some space and stop telling him what to do all the time but in our life this works .
We find a calm and quite life helps .
My OH is 63 and has had symptoms for a few years now. Although he is aware that he has problems, he is completely unaware of his unusual behaviour. He totally denied the porn, even though I found it on his tablet.
I find that a quiet and calm home helps too.
I find that a quiet and calm home helps too.
@Countryboy
Your post intrigued me. Can you share your secret. On how you live .As a wife to someone who has FTD I would anything to lengthen his quality and span of life .
When you wrote that you don’t recognise anything related to what Suediddy wrote are you referring to the things her OH does or that you yourself have none of the symptoms. Please forgive my inquiries I no way mean to offend
Your post intrigued me. Can you share your secret. On how you live .As a wife to someone who has FTD I would anything to lengthen his quality and span of life .
When you wrote that you don’t recognise anything related to what Suediddy wrote are you referring to the things her OH does or that you yourself have none of the symptoms. Please forgive my inquiries I no way mean to offend
Hi lilypat its not offensive to ask a question or put your own points of view so no worries , I’m pleased to see you gave your Husbands age, because I have dementia myself I do have difficulty understanding some of the comments
unfortunately I can’t answer your question on your OH quality of life or how it might improve, I will say I was diagnosed with Alzheimer’s in November 1999 age 56½ didn’t accept I had Alzheimer’s and had numerous test after 3 years in 2003 was sent for a PET brain scan and SPECT brain scan in 2004 the brain scan identified damage / loss of volume o the Frontal-temporal-lobes FTD I am now into my 20th year well it will be November 2019 { if I’m still alive } in November all I can say from the beginning in 1999 I carried on doing everything as normal and continued in employment for 8 years continued driving, sorry I can’t give and advise other than that I have always approached my medical problems Positively and Ignored all the Negatives obviously now aged 76 I have other issues well in March 2019 diagnosed with Kidney Cancer but I’m dealing with that in exactly the same way as my FTD next Kidney MRI scan is September well if survive until then
. don’t know but one thing for I’m not going to worry about it, I’m off on Tuesday 28 May to have some Skin Cancers removed from neck and back so getting good treatment always look on the Bright side of Life
