My husband has advanced FTD and no longer has any understanding of words and language. This makes communication almost impossible. He is 100% fit and it is impossible to keep him in the house. He has 2 x GPS systems, a watch and a fob, which he carries at all times. I have been unable to get any help either in respect of respite or a day care centre that will take responsibility for him. Is anyone else dealing with these issues and how do you cope?
Advice please
- Thread starter Chloecat
- Start date
Hi Chloecat, welcome to TP
I think you may struggle to find day care that will take someone who in his situation.
Most of these places aren't "secure", the staff ratios are often quite low and they have no right to keep him there against his will, if he wants to leave they have to let him, they're not allowed to physically stop him and if they tried there is always the possibility he could become aggressive with strangers.
Legally to detain an adult care home use a Deprivation of Liberty Safeguarding order (DoLS), sometime people are detained usually under section 2 or 3 of the Mental Health Act and of course the police can arrest you and a court send you to prison, outside these and similar legislation no one has the right to detain someone against their will, that's what the day care people are up against, if they detain him in any way they're breaking the law.
Respite care is different as they could get a DoLS and somewhere that is secure could keep him there, several people in care with my wife would be out the door given half a chance so all the doors are key coded, you need two different number to get in or out (so 4 in total) and we're all aware you don't open a door if a resident is too close.
Sorry that's not good news all I can suggest is you offer to stay, see if he fits in and they agree to taking him without you after a time.
K
I think you may struggle to find day care that will take someone who in his situation.
Most of these places aren't "secure", the staff ratios are often quite low and they have no right to keep him there against his will, if he wants to leave they have to let him, they're not allowed to physically stop him and if they tried there is always the possibility he could become aggressive with strangers.
Legally to detain an adult care home use a Deprivation of Liberty Safeguarding order (DoLS), sometime people are detained usually under section 2 or 3 of the Mental Health Act and of course the police can arrest you and a court send you to prison, outside these and similar legislation no one has the right to detain someone against their will, that's what the day care people are up against, if they detain him in any way they're breaking the law.
Respite care is different as they could get a DoLS and somewhere that is secure could keep him there, several people in care with my wife would be out the door given half a chance so all the doors are key coded, you need two different number to get in or out (so 4 in total) and we're all aware you don't open a door if a resident is too close.
Sorry that's not good news all I can suggest is you offer to stay, see if he fits in and they agree to taking him without you after a time.
K
Hi chloecat
Are there any dementia care homes in your area that also run daycare centres? They may be able to take him as they are more secure and better used to dealing with wanderers. Not sure if they would require a DOLs though but perhaps something to investigate?
Otherwise can you get a sitter/befriender who could accompany your husband if he wants to go for a walk and you would get a bit of a break?
Are there any dementia care homes in your area that also run daycare centres? They may be able to take him as they are more secure and better used to dealing with wanderers. Not sure if they would require a DOLs though but perhaps something to investigate?
Otherwise can you get a sitter/befriender who could accompany your husband if he wants to go for a walk and you would get a bit of a break?
I am in the same position - just like your husband my husband is very fit if he decides he wants to go into town which is 3 miles away he'll just go. Day or worryingly at night. Like you we have trackers. At night I lock the doors and keep his key then put it back in his pocket early in the morning. He goes for a walk about 6/630am. I recently contacted caring agencies for hourly visits and respite. We are going to try two nights in a few weeks time so that I can stay with family and sleep all night mainly! Before that carer will come 2/3 times to meet him. Second agency I've tried the first one was completely on suitable. Our husbands dementia is very complex it takes a special sort of carer to support him. Please Please please let me have I found the right carers. More generally I n our area we have a Carers Trust who advise and support carers.
They can also arrange short term support via Carers Prescription from GP. They are helping with small grant towards cost of break. Maybe there's something like that in your area. Altzeimer society advisor put me onto Carers Trust. Also it's been suggested I contact Mind, Age Uk. Residential respite is not appropriate for husband yet as he is fit and can independently go for long walks or on bus and get home so far safely. It's extraordinary since I think he's occasionally got lost in around house! Good luck in your search.
Hello
My husband also has FTD, Semanic variant, although at the moment he can still understand a few words it is very limited and obviously declining all the time.
I too have been looking for care, respite and support and it is so difficult. Where about a do you live and how old is your husband? I struggle to find activities which work for my husband who is late 50's, particularly as he wants things where no one talks to him.
Many thanks for you reply which pretty much confirms what I been told already. I think I am looking for a miracle. Perhaps as the condition worsens and he is less mobile things may become easier.
Thanks
I believe I am to be allocated a Social Worker shortly and hopefully they may be able to come up with some suggestions. Thanks for taking the time to reply
Hi there! Sorry no experience with this. It sounds like an overwhelming responsibility!
Do you have any help? Have you ask for help? Maybe you should?
Hopefully somebody will be along with suggestions shortly
Best wishes
I believe I am to be allocated a Social Worker shortly and hopefully they may be able to come up with some suggestions. Thanks for taking the time to reply
According to my allocated Psychiatric nurse there is no care home in our area that would take my husband. I have never heard of DOLs but I will investigate that further. Many thanks
I will explore some of your suggestions so many thanks. Think my husband is a little further 'gone' as his walks are long, frequent and needs me to go an fetch him back around 3-4 times a day. Just before Christmas he was part of a large police hunt , he was missing for over 24 hours and was found over 18 miles away after a media appeal. Don't think I could go through that again.
We live in the Greater Manchester area and my husband is 71. I am so sorry your husband has been robbed of his life so young you must be devastated. Take care
Good grief 24 hours! I start tracking my husband virtually as soon as he leaves the house especially in the middle of the night. That must have been terrible time for you. I once mentioned this night walking to a member of his family who said well at least he comes home so I shouldn't need to worry. Stupid attitude. I find it just as shocking that there is nodaycare provision for people like our husbands and us their carers. Must be postcode lottery too. I hope the social worker comes up with the answers for you
Just a thought would your local ramblers association have people who would volunteer to walk with him? Thinking about my husband that might be quite a responsibility though.
I know what you mean about the attitude of family. Unfortunately they don't see our sufferers as we do. They don't live with them 24/7. To the outside world my husband looks quite 'normal' and hasn't lost his social skills so will try to chat to everyone he meets. Sadly it is mostly rubbish. A friend of mine whose husband suffered a slightly different form of dementia also retained his social skills almost to the end. Behind closed doors it is a totally different story. My thoughts are with you.
Wandering
My wife was diagnosed with Azheimers 18 months ago and like your husband is a fit 74 year old. She will also walk several times a day usually carrying to extra bags of stuff which she insists she is "taking home". Around 10% of her trips she will return from, the remainder I pick her up in the car. She also wears a gps/gsm tracker which means I can talk to her if needbe. Fortunately she will not walk after about 8pm and medication means she usually sleeps well.I have found it very useful to set the tracker to transmit its location data to an internet tracking system every 15 mins. This conserves battery power. We have had a couple of malfunctions which have resulted in rides in the back of a police car. As I am stil gainfuly employed, usualy from home, I occasionally need to visit my clients and sometimes for several days. As my wife can wash and dress herself she realy just needs someone to watch over her and walk with her if required.Respite residential care has been impossible so far and any way probably not apropriate. I have been using a company to provide a team of carers to be companions to my wife in 8 hour relays when required but this is very expensive at £24/hour. What I reall needis the services of a dedicated carer to live in for a few days at a time. Does anyone have any experience of this sort of arangement
My wife was diagnosed with Azheimers 18 months ago and like your husband is a fit 74 year old. She will also walk several times a day usually carrying to extra bags of stuff which she insists she is "taking home". Around 10% of her trips she will return from, the remainder I pick her up in the car. She also wears a gps/gsm tracker which means I can talk to her if needbe. Fortunately she will not walk after about 8pm and medication means she usually sleeps well.I have found it very useful to set the tracker to transmit its location data to an internet tracking system every 15 mins. This conserves battery power. We have had a couple of malfunctions which have resulted in rides in the back of a police car. As I am stil gainfuly employed, usualy from home, I occasionally need to visit my clients and sometimes for several days. As my wife can wash and dress herself she realy just needs someone to watch over her and walk with her if required.Respite residential care has been impossible so far and any way probably not apropriate. I have been using a company to provide a team of carers to be companions to my wife in 8 hour relays when required but this is very expensive at £24/hour. What I reall needis the services of a dedicated carer to live in for a few days at a time. Does anyone have any experience of this sort of arangement
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Hi my husband is diagnosed with Alzheimers but his speech and understanding are poor and we dont go into groups often because he cant join in while mobility and memory are not bad (in the dementia world) and Im finding the discussion helpful - I hadnt thought it would be a problem in day care.
Has anyone had experience of someone repeating the last words or phrase you've said ?
Rosie
Has anyone had experience of someone repeating the last words or phrase you've said ?
Rosie
Have read all of your posts one thing comes to mind. There are signing classes for babies to help them communicate. THey are called Sing and Sign. Not sure whether that is a goer with FTD? But, as music is used, and therefore and different area of the brain, maybe an alternative means of communicating?
DOn't know whether music comes into a different area to speech so maybe all for nought.
DOn't know whether music comes into a different area to speech so maybe all for nought.
I don't know if it is. When my OH speech started getting bad we thought about singing as he is a very good singer. However, even his old favourites he cant remember the words and I think that upsets him more than speech. We can't write them down because he can't process the words on the page.
Horrible illness
Horrible illness
My OH has FTD and is losing language. It isnt just the speech - it is language itself. He is even having problems with pictures now and often goes into the ladies loos as the symbol on the door has become meaningless to him. Singing however is still possible as this is stored in a different part of the brain.
Im sorry this is not much help to you. Have you thought of being referred to a Speech Therapist?
Edit to explain that the Speech Therapist wont be able to improve the speech, but they are very good at devising alternative forms of communication.
Im sorry this is not much help to you. Have you thought of being referred to a Speech Therapist?
Edit to explain that the Speech Therapist wont be able to improve the speech, but they are very good at devising alternative forms of communication.
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