Trying to care for someone with FTD...

[BSN]

Hello,

My partner has recently been diagnosed with Frontotemporal Lobe Dementia, the behavioural variant although she also has quite serious memory loss too.
I have given up work, which I loved, to care for her. I am coming to terms with not working anymore but caring for her is a horrible strain.
She has previously, around the time her symptoms became quite pronounced, drunk too much alcohol but over the past couple of years she has stopped drinking. Now that her FTD is getting to the moderate stage she repeatedly says "I just want to die" and so thinks that drinking whisky will finish her off. So she is doing whatever she can to drink as much as she can. This entails her walking to the local corner shop and swigging from the bottle on the way home and then passing out, sometimes on the doorstep. She is taking medication to make her feel unwell if she drinks but either forgets or just doesn't care. She has also started smoking recently and can get through 3 packets a day. I don't have any alcohol in the house and now can't go out for a meal/socialise in many places because of the temptation for her to drink. She would not be content with one glass and would drink uncontrollably. She refuses to eat meat and vegetables, or 'normal' food and constantly eats sweets and chocolate through the day. Her teeth are suffering as a result. There seems no reasoning with her on any count.
I take her to support groups, to garden centres, to visit her 85 year old mum and we spend time with our wider family. She doesn't really have much by way of conversation anymore, except for a few phrases which she repeats over and over, but will answer questions. She also has a carer visit to help occupy her mind once a week. I try to engage her in activities but her attention span is very short. She says she is bored but there is so much that needs doing, but she has no impetus or drive to do it.
She does nothing in the house, no cooking, cleaning, won't walk the dog, drive, cut the grass or anything save vacuum very badly.

I am at my wits end. I am tired of trying to care for someone who clearly doesn't care about herself or anyone else. She has no compassion or empathy any more and has become a selfish and moody character, who I have to tip toe around.

Her hygiene habits are poor, but manageable. Its really her behaviour I am struggling with. Does anyone else have any advice at all please? I am thinking of getting her bank cards stopped, or the PINs changed. I do have a Lasting Power of Attorney in place. That way she will struggle to buy the drink and I can, begrudgingly, buy the cigarettes for her.

I am sorry this post has been so long!

 

[Hellyg]

Hello

My husband has FTD, although the semantic variant. My husband also used to frequently say he wanted go die, several times. Day. Medication seems to have resolved this, although maybe he still thinks it I am not sure.

Whilst he didn't drink much, I haven't moved him over to shandy and surprisingly he accepted it. I have found making sure he always has what he thinks he wants on hand, i.e a drink even if it's an alternative has helped. Is there an subsitute you could provide,

Also not sure if you have found the following site and forum https://www.ftdsupportforum.com/ I have found it another source along with this one of valuable information, support and insight

 

[canary]

Hello BSN
My OH has bv FTD and I recognise the things you are saying - change of character, loss of empathy, apathy, craving for sweets and obsessive behaviour; these are all early symptoms of FTD. I feel I no longer know the man I am living with.

Dont try reasoning with her; logic and reasoning are lost very early on. When you say that there is no reasoning with her, you are right - there is none. Try distracting her, diverting her attention onto something else, telling her little white lies (or sometimes whopping big ones) or anything else that will keep her calm. Another tip especially useful for FTD (as they frequently have trouble with language) is never say "no" to them - it is often like a red rag to a bull - so start the sentence with "yes" and then go on to say what you need to say, even if you are actually saying no! Eg Yes, we can go to the bank later; yes, this is what I have cooked; yes, the doctor said you shouldnt drink. Not easy to do and I keep forgetting, but it does work.

 

[JigJog]

Hi,

My husband was diagnosed with bvFTD over 4 years ago now and many of the things you say are very familiar to me.

I too gave up work to look after him and as his behavioural problems worsened, the stress of caring for him became unbearable.

The inappropriate behaviour associated with bvFTD can take different forms.

With my husband there were two; firstly he would drop his trousers and go to the toilet in totally inappropriate places in public without warning and secondly he became a binge eater, eating everything and anything in sight. His inappropriate eating behaviour meant that all food had to be kept in hidden fridges in the garage. Food had to be brought into the house in small amounts, as needed. If we were out, he would take food from other people's plates and having folks round for a meal became impossible. More recently he began to eat items which were a danger to him and I was constantly on high alert, watching everything he was doing. I couldn't relax for a minute.

His consultant told me that I couldn't continue functioning on such a high level of alert and I really needed to find an appropriate care home for him. It wasn't what I wanted, but I knew he was right.

He moved to a care home about 2 months ago now and I can't believe how quickly he has settled. He is really happy and I am no longer on constant alert and can relax. I visit him daily and our relationship is so much better now that I don't have to constantly monitor and handle his inappropriate behaviour.

bvFTD is not common and is very different from Alzheimer's. I found it very difficult to find others with similar experiences. There are several very good Facebook groups for FTD with members worldwide. These helped me to understand his behaviour more and reassured me that it was all part of the disease.

You are clearly going through a challenging time. Please feel free to private message me if I can be of any help.

Best wishes to you.

JigJog

 

[PalSal]

Hello,

My partner has recently been diagnosed with Frontotemporal Lobe Dementia, the behavioural variant although she also has quite serious memory loss too.
I have given up work, which I loved, to care for her. I am coming to terms with not working anymore but caring for her is a horrible strain.
She has previously, around the time her symptoms became quite pronounced, drunk too much alcohol but over the past couple of years she has stopped drinking. Now that her FTD is getting to the moderate stage she repeatedly says "I just want to die" and so thinks that drinking whisky will finish her off. So she is doing whatever she can to drink as much as she can. This entails her walking to the local corner shop and swigging from the bottle on the way home and then passing out, sometimes on the doorstep. She is taking medication to make her feel unwell if she drinks but either forgets or just doesn't care. She has also started smoking recently and can get through 3 packets a day. I don't have any alcohol in the house and now can't go out for a meal/socialise in many places because of the temptation for her to drink. She would not be content with one glass and would drink uncontrollably. She refuses to eat meat and vegetables, or 'normal' food and constantly eats sweets and chocolate through the day. Her teeth are suffering as a result. There seems no reasoning with her on any count.
I take her to support groups, to garden centres, to visit her 85 year old mum and we spend time with our wider family. She doesn't really have much by way of conversation anymore, except for a few phrases which she repeats over and over, but will answer questions. She also has a carer visit to help occupy her mind once a week. I try to engage her in activities but her attention span is very short. She says she is bored but there is so much that needs doing, but she has no impetus or drive to do it.
She does nothing in the house, no cooking, cleaning, won't walk the dog, drive, cut the grass or anything save vacuum very badly.

I am at my wits end. I am tired of trying to care for someone who clearly doesn't care about herself or anyone else. She has no compassion or empathy any more and has become a selfish and moody character, who I have to tip toe around.

Her hygiene habits are poor, but manageable. Its really her behaviour I am struggling with. Does anyone else have any advice at all please? I am thinking of getting her bank cards stopped, or the PINs changed. I do have a Lasting Power of Attorney in place. That way she will struggle to buy the drink and I can, begrudgingly, buy the cigarettes for her.

I am sorry this post has been so long!

Hi,
You say you are taking her to support groups. Perhaps one more support group would be relevant, as it sounds as if she is addicted to alcohol. Alcoholics Anonymous is a good place for her to get support for her alcohol addiction and help her to live in this 24 hours. Perhaps it could be helpful to her, she will meet plenty of people struggling with life problems (ie life threatening health issues) living through them sober. Just a thought

 

[BSN]

Hello

My husband has FTD, although the semantic variant. My husband also used to frequently say he wanted go die, several times. Day. Medication seems to have resolved this, although maybe he still thinks it I am not sure.

Whilst he didn't drink much, I haven't moved him over to shandy and surprisingly he accepted it. I have found making sure he always has what he thinks he wants on hand, i.e a drink even if it's an alternative has helped. Is there an subsitute you could provide,

Also not sure if you have found the following site and forum I have found it another source along with this one of valuable information, support and insight

Hello,
Thank you for your advice and for responding. I really appreciate it. I wasn't sure anyone would! She has non alcoholic wine usually and is happy with that but over the past month she has a strong desire for whisky and being drunk. I have looked online and you can buy non alcoholic spirits - you have prompted me to give that a go.
I will certainly check out the FTD forum link, thank you.

 

[BSN]

Hello BSN
My OH has bv FTD and I recognise the things you are saying - change of character, loss of empathy, apathy, craving for sweets and obsessive behaviour; these are all early symptoms of FTD. I feel I no longer know the man I am living with.

Dont try reasoning with her; logic and reasoning are lost very early on. When you say that there is no reasoning with her, you are right - there is none. Try distracting her, diverting her attention onto something else, telling her little white lies (or sometimes whopping big ones) or anything else that will keep her calm. Another tip especially useful for FTD (as they frequently have trouble with language) is never say "no" to them - it is often like a red rag to a bull - so start the sentence with "yes" and then go on to say what you need to say, even if you are actually saying no! Eg Yes, we can go to the bank later; yes, this is what I have cooked; yes, the doctor said you shouldnt drink. Not easy to do and I keep forgetting, but it does work.

Hi Canary,

Thank you so much. I will give 'Yes' a go. I can already see how it will make sense. I am sorry that you are experiencing some of the same things as me and you no longer recognise your OH - I feel for you.

Thank you again for your advice.

 

[BSN]

Hello BSN
My OH has bv FTD and I recognise the things you are saying - change of character, loss of empathy, apathy, craving for sweets and obsessive behaviour; these are all early symptoms of FTD. I feel I no longer know the man I am living with.

Dont try reasoning with her; logic and reasoning are lost very early on. When you say that there is no reasoning with her, you are right - there is none. Try distracting her, diverting her attention onto something else, telling her little white lies (or sometimes whopping big ones) or anything else that will keep her calm. Another tip especially useful for FTD (as they frequently have trouble with language) is never say "no" to them - it is often like a red rag to a bull - so start the sentence with "yes" and then go on to say what you need to say, even if you are actually saying no! Eg Yes, we can go to the bank later; yes, this is what I have cooked; yes, the doctor said you shouldnt drink. Not easy to do and I keep forgetting, but it does work.

Hi Canary
I have taken your advice and avoided the 'No' word and it seems to be working so far ! It has kept her calmer and, I think happier. really helpful advice, thanks again.

 

[minnie2020]

Hello BSN
My OH has bv FTD and I recognise the things you are saying - change of character, loss of empathy, apathy, craving for sweets and obsessive behaviour; these are all early symptoms of FTD. I feel I no longer know the man I am living with.

Dont try reasoning with her; logic and reasoning are lost very early on. When you say that there is no reasoning with her, you are right - there is none. Try distracting her, diverting her attention onto something else, telling her little white lies (or sometimes whopping big ones) or anything else that will keep her calm. Another tip especially useful for FTD (as they frequently have trouble with language) is never say "no" to them - it is often like a red rag to a bull - so start the sentence with "yes" and then go on to say what you need to say, even if you are actually saying no! Eg Yes, we can go to the bank later; yes, this is what I have cooked; yes, the doctor said you shouldnt drink. Not easy to do and I keep forgetting, but it does work.

Hi,

My husband was diagnosed with bvFTD over 4 years ago now and many of the things you say are very familiar to me.

I too gave up work to look after him and as his behavioural problems worsened, the stress of caring for him became unbearable.

The inappropriate behaviour associated with bvFTD can take different forms.

With my husband there were two; firstly he would drop his trousers and go to the toilet in totally inappropriate places in public without warning and secondly he became a binge eater, eating everything and anything in sight. His inappropriate eating behaviour meant that all food had to be kept in hidden fridges in the garage. Food had to be brought into the house in small amounts, as needed. If we were out, he would take food from other people's plates and having folks round for a meal became impossible. More recently he began to eat items which were a danger to him and I was constantly on high alert, watching everything he was doing. I couldn't relax for a minute.

His consultant told me that I couldn't continue functioning on such a high level of alert and I really needed to find an appropriate care home for him. It wasn't what I wanted, but I knew he was right.

He moved to a care home about 2 months ago now and I can't believe how quickly he has settled. He is really happy and I am no longer on constant alert and can relax. I visit him daily and our relationship is so much better now that I don't have to constantly monitor and handle his inappropriate behaviour.

bvFTD is not common and is very different from Alzheimer's. I found it very difficult to find others with similar experiences. There are several very good Facebook groups for FTD with members worldwide. These helped me to understand his behaviour more and reassured me that it was all part of the disease.

You are clearly going through a challenging time. Please feel free to private message me if I can be of any help.

Best wishes to you.

JigJog

Wow jig jog I can’t believe how this sounds so much like my dad! He’s 58 and has semantic dementia he has been in a care home for 3 weeks now as I could no longer manage his obsessive eating and drinking non food items! Seems the care Home are struggling too.

 

[JigJog]

Wow jig jog I can’t believe how this sounds so much like my dad! He’s 58 and has semantic dementia he has been in a care home for 3 weeks now as I could no longer manage his obsessive eating and drinking non food items! Seems the care Home are struggling too.

Hi minnie2020,

You're the first person I've come across that has experienced the obsessive eating and drinking of food and non food items!

My OH hasn't been too bad in the care home until this last couple of weeks and now he's back to how he used to be at home. The Manager called me into the office to tell me that he'd been into the kitchen and plated up a meal of pork, potatoes, chocolate cake and custard, all cold from the fridge and on the same plate. She was concerned that they were on the same plate! I told her she was missing the point and my concern was about the security! How had he got into the kitchen and been there for that length of time without anyone noticing? Luckily it was food he went for, it could have just have easily been some of the cleaning products!

I'll never forget the first time he tried to eat a non-food item at home. I could see him eating something, his cheeks stuffed full like a hamster's. When I asked him what he was eating, the answer came back, 'Stuff!.' When he opened his mouth, I could see that he's found a box of matches and stuffed the contents into his mouth. I'll always remember scraping them out of his mouth. I knew then that I needed help to keep him safe.

I just hope I've found the right place. Not easy is it?

Keep posting. I hope your dad settles and that the home finds strategies to care for him.

JigJog x

 

[minnie2020]

Hi minnie2020,

You're the first person I've come across that has experienced the obsessive eating and drinking of food and non food items!

My OH hasn't been too bad in the care home until this last couple of weeks and now he's back to how he used to be at home. The Manager called me into the office to tell me that he'd been into the kitchen and plated up a meal of pork, potatoes, chocolate cake and custard, all cold from the fridge and on the same plate. She was concerned that they were on the same plate! I told her she was missing the point and my concern was about the security! How had he got into the kitchen and been there for that length of time without anyone noticing? Luckily it was food he went for, it could have just have easily been some of the cleaning products!

I'll never forget the first time he tried to eat a non-food item at home. I could see him eating something, his cheeks stuffed full like a hamster's. When I asked him what he was eating, the answer came back, 'Stuff!.' When he opened his mouth, I could see that he's found a box of matches and stuffed the contents into his mouth. I'll always remember scraping them out of his mouth. I knew then that I needed help to keep him safe.

I just hope I've found the right place. Not easy is it?

Keep posting. I hope your dad settles and that the home finds strategies to care for him.

JigJog x

I know I thought it was just my dad like this! Matches oh my!! My dads eaten sponges, toilet roll, drank a bottle of cooking oil and washing up liquid don’t know how the taste didn’t stop him that must be affected too. Hope you have but I think we are doing the best thing such a hard decision to make though

 

[BSN]

My OH was diagnosed with FTD and has been in a secure mental Health unit for older people for over 22 months now. This is his third admission. Whilst I know he is being cared for and looked after, I curse myself daily for agreeing to the assessment that has landed him in this situation. However, I know that it was blatantly obvious that his illness could not be dealt with at home. My loved one remains in hospital totally aware that he is suffering from an illness that eats away at his brain. His moods are totally unpredictable. Indeed they have been dark, sinking into the realms of suicide. if he was at home I have no idea how I would have coped. Saying that, I would love to have him here and to look after him but I know that can't happen. I have LPA for everything and thank goodness I do. I am thinking that at least you have a Community Psychiatric Nurse on your case. If not you should have. They can be accessed via your GP.
Best of luck to you. All I would add is that you have to shout and stand your ground.

Thank you so much for your response. Things have moved on a pace over the past few weeks and I am still reeling from what has happened. In short she was sectioned under the Mental Health Act two weeks ago, because she was deemed a risk to herself. I am glad that she is now somewhere safe and to be honest the respite time for me is very welcome. I have a review meeting with her doctor next week and I am dreading her coming home. I will take your advice, I will stand my ground and make sure my views are heard and acted upon. She is desperate to come home and is getting more and more desperate to leave. I have been promised all the necessary support when she does leave. She is largely detoxed now and is more stable, so hopefully things will be OK. I hope you get to see your OH lots and I completely understand how difficult a decision you would have made to get him the assessment. Our Admiral Nurse said to me this week that I must assume I have the permission to take the tough decisions - someone has to - and it is absolutely for the best for your loved one. She has tried to cut her wrists since she has been on the secure ward - like your OH, she has to be in the best place to help manage that kind of trauma - in my limited experience I have at least learnt that must. Thank you gain for sharing your story with me.

 

[BSN]

I am totally with you in spirit. This evening I have received a call from my OHs consultant and he at last,(!), wants a one to one meeting with me. I am so envious that you have access and in put from an Admiral Nurse. I honestly don't think any one in my area either knows about them or understands what they can do. A truly appalling situation. They should be as common as Macmillan nurses however, I honestly believe that because dementia is not regarded in the same way as cancer, they do not get the same publicity and therefore do not get the same support. Best wishes.

I am with you in spirit too !! Thank goodness you have a meeting with the consultant at last - I really wish you all the best with that. How long has your OH been suffering with FTD? My OH has had it for at least 3/4 years but was only diagnosed a few months ago. The Admiral Nurse we had contact with worked for a local charity - in Kent. She has left now and hasn't been replaced, but happened to be helping run a Carer's Training Course that I attended this week - so I was very lucky. Do you have a good charity near you to help? Best wishes to you.