Frontal Temporal Lobe Degeneration

[makalu]

We just got the final diagnosis we were dreading that my 60 year old dad has got this terrible disease.
He is in a mental health unit as his behaviour has become so hard to manage over the last few months - he's at risk of harming himself or my mum if left at home. He has had to be sectioned as he has escaped twice in the last 24 hours.
The Drs say he will calm down eventually but he is so stressed and upset he is on a 15 minute watch by the staff in the unit and wants to come home. They have told us not to visit this weekend as they need to stabilise him (hes insulin dependent as well).
He really thought that the diagnosis would bring a release and he would get better.
What do I do, hes constantly calling for me, my heart has broken i feel i have lost my dad already - when I am alone its so hard i just want to see him. I cant see he will ever be able to come home.

 

[makalu]

He's like a ghost......

Got to see my dad today, he looked like a shadow of his former self. He has lost weight in the last week, is off his food and is constantly sweating and shaking. Staff think he may have a UTI but cannot collect a sample from him. He is going to the toilet all over the place as well and wont shower or clean himself, or wont let anyone help him. In the week he has been away from us he has deteriorated so much - can anyone relate to this? Should we bring him home? He has been sectioned now for up to 6 months. I just dont know what to do for the best.

 

[Margarita]

Sorry to read what is happing to your father

Should we bring him home? He has been sectioned now for up to 6 months.

Very easy for me to say , but it sounds like your father in the right place getting the right care ,till they Stabled your father.

Are you all Ok with the care your father receiving from the unit his in ??

 

[makalu]

Yes they are doing everything possible to make him feel better the nurses are all fantastic and very caring, but they are not a dementia unit, he is with addiction and depressed/schitzophrenic patients, so he may have to be moved elsewhere where he will be safer, ie more secure and nurses used to dealing with this type of illness. Only problem is there is one place in our town that is for OAP's and dads only 60. He may end of out of area or if he goes in the OAP unit I just feel he will go downhill really quickly.
I think we will give them more time, as hes only been in for one week so far and see what our options are from then on. Will see him tomorrow and get an update. Nurses dont recommend we take him home as he's too poorly and disorientated. They are the experts so we will take their advice for now. Thanks for your reply.

 

[makalu]

My dad cried when he saw me today.

I walked into the unit with my baby and he was crying and so happy to see me. The nurses have removed all the furniture from his room and put his mattress on the floor. Dad had moved all his furniture out into the hall and had fallen from bed throughout the night. The lovely watch i gave him in June for his 60th birthday has gone missing. He kept leaving all things out and about and one of the other patients has picked it up probably. Dad wanted to come home today, the nurses have stopped giving him lorazapan as that may have been why he went downhill so quickly from last Weds. He seemed perkier but that meant he knew that he wanted to come home. The managers at the unit had a meeting and decided they couldnt cope with his one to one care that was needed. So hes been moved to the old peoples secure unit up the road that specialises in dementia. He doesnt know where he is and I am dreading seeing him tomorrow because he gets so upset. the nurses asked mum if she wanted to be there when he was moved but she couldnt face it. We feel so guilty. I live in hope that we can get his medicine stabilsed so he can come home. What is going on in his head? What does he hear, or see? Or think? DOes he realise that we have left him? I have all these questions that I doubt anyone can ever answer. Posting on here helps me get things off my chest. Thanks x

 

[jcr1976]

unanswered questions

hiya my names julia

First of all great big hugss to you i know its not easy.My mum is getting worse to the point where we know a care home is iminent if she carries on progressing as she is and just wanted to try give you a bit of reassurance... you said u went in with your baby...well hun as much as you love your dad i think you have him in he right place... i myself have a 9yr old boy thats dealing quite well with mums illness better than me and my sister to be honest.. i just wanted to say your dad is obviously very well loved and although it tears you up to see him going thru this you have to remember not only are you a daughter but you are a parent yourself and you need to raise your child too...and if your dad was of sound mind you know he would tell you this too, dont feel bad or guilty about accepting help outside the family home all us caring for our loved ones have to at some point, i know if my son was younger i would struggle more. your making sure he is looked after, your concerned for his well being and your trying to do the right thing...it takes alot of strength to care for our loved ones, it takes even more to accept outside help and realise that we cant cope alone...be proud that you have your dad getting the help he needs, i know its tough but at the end of the day we are just human hun. take care of yourself and your young family and let the professionals help with your dad thats what they are there for and trained to do. take care and cya around the site. hugsss

Julia
Daughter and carer for Diane age 56 with ftd

 

[makalu]

Big thanks

Hi Julia

what a lovely message you sent and it is truly appreciated. You must have it tough as well being a carer for your mum, so I send u a big hug back!

We are really not happy with the new hospital dads gone to its full of really old people 70+ really frail and who dont move all day or just stand by the doors trying to get out. Its awful.
Dad keeps breaking the cutlery trying to break out and i really dont think the nurses will be able to cope with him for much longer, hes a fit man phsyically.

I said to mum we have to give this time and not make rash decisions, he's been sectioned for a reason so we must try and get his medication stabilised before we do anything else, thats the point of him being there. Thank god for my Isabella for all our sakes you're right about that!

Thanks again, and it makes such a difference knowing there are people who can relate with what seems such a lonely desperate situation.
All the best to you and look after yourself and your son as well as your mum.

X

 

[jcr1976]

options

hiya again

thanks for the hugs Today i went and looked around a care home local to me as a possibility for when the time comes for mum to need more specialist care and was greeted by a lot of happy residents living in there own little world and the staff seemed great with them .... i told one resident that cared for a chat that it was really me wanting to come stay there so someone could cook and clean after me for once. Anyway on speaking to the care home manager she told me it was a council run facility, no waiting list as such, placements were made on an evaluation from the residents social worker based on their needs... now this place isnt a medicating home,But she did say there are homes that are medicating homes.... sorry im rambling its 2.15am and ivehad one of them nights where after visiting the home ive let my emotions get the better of my stubborness (good job my other half loves me the poor bloke ) anyway my point being if your not happy about your dads place then stand up and shout.. if you dont noone else will... if you dont already have one get him a social worker, get that social worker to evaulate his needs and then she will also have a list of homes suitable for your dad, this one i checked out today is a home for dementia related illness only residents.. from the age of 55....they are so on the ball even to the decor of the home ie no patterned carpets as residents spend all day trying to pick the pattern off thinking its something someone dropped, colours of signs (apparently the easiest for them to read is black text on a yellow background) colour coded things in the home that they associate with object rather than trying to have to think of the object and getting confused.... im rambling again sorry.... my point is and maybe you have done this already but if not... get on to your social worker get a list of homes, visit them, ask them if they have a medicating doctor on the premises and anything else you require and when you find one that can deal with your dads needs request a transfer and keep on at them till you get it. Yes the place he is now is catering to his needs but if your not happy and hes not happy there is usually more than one place available to cope with our loved ones so fight for a place you like better adn your dad likes better. anyway better try get some sleep the day starts again in 5 hours.. what joy!! haha.. good luck and keep us posted. hugssss

julia
daughter and carer of diane age 56 ftd

 

[michaelhamilton]

Ftd

Hi makalu,

So sorry and so sad for you and for your Dad. Our only consolation as carers or former carers of FTD sufferers is that they are not suffering physical pain although the emotional pain can be as bad.

We are in the early stages (well - early mid-stage) and do not know what lies ahead but I just wanted to post as a newbie and send support, understanding and best wishes.

I know the rules preclude personal contact except via a Moderator. If you want a friendly voice on the phone - we have free evening calls via Sky - let Moderator Brucie know and he can decide whether to put us in touch with each other.
Prayers and smiles from Scotland,

Michael

 

[Brucie]

If you want a friendly voice on the phone - we have free evening calls via Sky - let Moderator Brucie know and he can decide whether to put us in touch with each other.

Moderator note: Just to clarify - we don't recommend personal contact unless you know a member for quite some time and have some sort of idea of their bona fides.

TP is primarily an Internet forum where contacts should be on the forum itself. With the exception of the moderators, who have been vetted [ouch!] by the Alzheimer's Society as volunteers, the identities of all members are uncertain. Those who have posted over a long period are more likely to be ok, but we even have some ringers there.

TP is best used to gain a range of views or messages from different members, and to judge possible actions on the basis of those.

Sorry Michael, I don't put people in contact in the way you describe. Anyone who contacts another member does so on their own responsibility, and while we have evidence of several positive results, we don't recommend it in general.

Caveat emptor.

 

[makalu]

Its such a battle.......

thanks Michael, your help and support is much appreciated. I like posting on here as its really helpful to read back and remind yourself of things and often an outsiders view really helps.
Julia, good for you to take the first step in looking outside home for care. Try to come to terms with that eventuality now may make it easier, unfortunately for us, that time came before we had time to even realise the impact of dads condition. Every day that passes my dad slips into a deeper inner world. He is on this bloomin sedation and its making him wet himself all the time, hes dirty as he walks round with no shoes and socks on. He needs a good bath. He smells and its terrible, my dads always been such a lovely proud, good looking man, its just not fair. The nurses are very anti-confrontation and if dad says no he doesnt want to wash they just leave it. I have requested a meeting next weds with the consultant and everyone involved. HOPEFULLY by then dad will have had some sort of reaction to some of the drugs they are giving him and we can start to make some plans. We have to let the Dr's do their job until then, but its heartbreaking beyond belief. I could only stay for 20 mins today, he thinks Im his wife now and keeps demanding i take him home. He also scared me slightly with the baby - she was sitting in her car seat and he bent over and starting pulling her arm, saying he just wanted it out. Then she cried and it was too noisy for him and he got upset. He didnt hurt her but it shocked me as he didnt recognise that it was a baby - his grandaughter. We took the dog in yesterday - not even a spark in his eye appeared. I feel like my heart is being broken in two and know that we have to wait until next week before we do anything drastic.
Keep strong guys and keep talking to each other its re-assuring to hear your stories in what can be a very lonely world for all concerned. Speak soon

 

[makalu]

The Calm after the Storm.....

Hi everyone, it looks likes the meds are having an effect on dad, he is very tired and sleepy now, and thinks Im my mum. He still wanders up and down the corridors and it seems that all the patients wear each others clothes and shoes and its just part of daily life! The incontinence has got worse though and dads convinced hes working at the home. Trouble is being an electrician he has been trying to pull apart wires and poking things into plugs so the nurses have to keep an eye on him. He keeps trying to get mum to cuddle and kiss him which of course shes willing to do as she loves him. Hes not an emotional man or particularly ever been tactile. Today i think he thought i was mum, he kept trying to kiss me and cuddle me saying he wanted to be close, it was quite distressing as it wasnt in a fatherly way if you know what i mean. I told him i was his daughter and i sat on his bed holding his hand and stroking his hair. He happily accepted this but it felt weird. Im glad to see he is calmer. Mums happier as she has been missing him and the cuddles they have must be reassuring to her. We have a meeting on Wednesday with Drs to see how he is fairing and what the next few weeks will hold. We will see what happens. It was good to see he is calm but I feel without the sedation unsure of his future. is this what his future will be like?

 

[makalu]

Poor dad

Its been a week or so since I last wrote on here, dads gone downhill really quickly, hes losing so much weight, he seems settled now though. But all he does is sleep. We go and visit and hes been asleep on the floor or in one of the other patients bedrooms. He complains of terrible headaches and his fingers dont seem to want to bend properly and his toes seem rigid. Is this normal? Occupational therapists have him making a wooden box to put memories in for the baby but he finds it hard to hold the paint brush and today he just wanted to sleep. It must be the meds surely? What would happen if they stopped the tranquilizers? What do we do for the best? Dr's have asked that we leave him to continue his assessment but its breaking our heart. His rooms so bare, every time we put up pictures he takes them down and puts them in his pocket. I love him so much and our lives feel empty without him laughing and stomping about.

 

[makalu]

Infection...

Its official he has a UTI ........yesterday was the Xmas do at the unit, poor dad could not even lift his head of his pillow. he wont open his eyes and keeps thinking hes going blind. They are feeding him chocolate protein drinks as he wont eat. The nurse said his brain is not recognising the hunger signals. Doctor says he has normal temp and BP and we should wait and see what change if any the anti-biotics make over the weekend. If one more person says Merry Christmas I think I will scream........poor dad....

 

[TinaT]

You truely are going through a very bad time and I send my love to you and your mum. God bless her, I can almost feel her bewilderment and pain. You are all doing the right thing. He is in the only place where he could be at this stage. It does take time, it took 9 months to stabalise my lovely husband and he was not as violent as your dad was.

I would ask what the staff are doing about his UTI as this needs dealing with quickly. My mum went downhill incredibly rapidly when she developed kidney troubles. Within a week of strong antibiotics, she was so much better although the antibiotics had caused her bowels to stop working. Modern medicines are so very powerful and it takes a while to get things working for each individual in the best way possible.

Regarding the fact that your dad is so young and other patients are much older. I have had to accept this as a fact of life. My Ken is the youngest by far at his EMI home - also run by the Local Council with a policy of needs come first via the social worker. I could not wish for a better place for him. The staff are so kind and there is a real family feeling right throught from care workers to management. I love so many of our 'golden oldies' residents - they are sweet and loveable although obviously unpredictable and sometimes can kiss you one moment and strike out at you the next.

Keep your chin up my love and think of your lovely little baby. They can cheer up even the most horrible of circumstances. I admire you so much for supporting your mum through this very emotional time.

xxTinaT

 

[Chrissyan]

...its making him wet himself all the time, hes dirty as he walks round with no shoes and socks on. He needs a good bath. He smells and its terrible,

He should be wearing something for his incontinence,good carers should be able to persuade him to at least have a little wash.

it seems that all the patients wear each others clothes and shoes and its just part of daily life!

It is not a part of daily life in other nursing homes.

We go and visit and hes been asleep on the floor or in one of the other patients bedrooms.

Why don't the carers move him & put him to bed?

I have no experience of dementia care homes, but a basic level of care seems very much lacking in this one.

Wait until the UTI is under control & hopefully your Dad is stabilised a bit & get him out of there, choose a home you & your Mum like. I appreciate it will have to be in another town & you & your Mum will have to travel but this one is clearly sub standard.

I hope that your Dad picks up when they get his infection sorted & the correct meds & I hope you can find him decent care. So sorry you have to go through this.

 

[TinaT]

I may be wrong but I read your posts and thought your dad was in an hospital assessment unit, not a care home. A care home, even an EMI care home, needs to have an assessment before a resident is admitted as far as I know.

xxTinaT

 

[Chrissyan]

So hes been moved to the old peoples secure unit up the road that specialises in dementia. He doesnt know where he is and I am dreading seeing him tomorrow because he gets so upset.

I think you are right Tina I may have misunderstood, still the level of 'care' seems very poor, let's hope he is moved out of there soon.

 

[TinaT]

I'm sorry to say that this level of care described in this thread was also experienced in the assessment unit where my husband was sectioned for many months. It was an experience which is now seered into my brain and at the time I was so powerless to complain. The staff had all the power because my husband was 'sectioned'. I was desperate to get him out of the place but it took me a long time to achieve this. The Consultant felt that he could not be placed in any EMI Unit as the EMI staff would not be able to cope with his behaviour which would also upset other residents.

He has been very well placed in a local authority run EMI Home for the last nine months and is well loved by the staff and has caused no trouble for any resident.

xxTinaT

 

[makalu]

OH tina, thank you for your lovely email, i am glad that you have found a happy peace for your loved one at long last. I cant understand how it can take so long to get someone stabilised....
I am going to call the consultant tomorrow and ask to be in on the next review. We feel that they are dealing with the mental health issues only, but his medical issues, ie the UTI and diabetes are not being handled efficiently. He needs some proper blood tests done but as hes sectioned & would have to travel 5 minutes away to the hospital the doctor doesnt want to do this. Surely the bloods can be done in house?
He is still under assessment and the docs dont want us to move him yet but i feel that we are going to lose him if we dont get him out of there. Its things like their lack of respect for his dignity. He needs a hair cut - theres no money for it - we'll pay for it - theres no insurance for independents to come in. We'll do it ourselves then. He needs his dentures re-fitted - they are so painful he has taken to not wearing them at all so you can imagine how sad he looks without them. I think the nurses can only do so much on the patient to nurse ratio there just isnt enough carers and they report to the consultants who are GODS to them and they are so bloody frightened of doing anything that may cause an altrication or complaint they just let the residents do what they want.. He isnt eating...well why cant someone sit and feed him yoghurt or a protein drink rather than leaving him to help himself - i could go on but i wont. Im going to get on the case on Monday. If anyone can recommend a care home in the Chichester, West Sussex area then please let me know. Lots of love to you all and thank you for your support. Sending mine right back to YOU..X