Frontal Temporal Lobe Degeneration

[Margarita]

so I went and got my dad and danced with him around the lounge for 5 minutes, while the gentleman played some lovely classical music. My god it was so amazing

What a lovely memory for you to have, it is amazing how music is such a good positive simulation, my mother also will get up dance with me slowly but has to lean on Zimmer frame now.

Im going to take mum and baby to the new forest in a couple of weeks for a little break, and its only an hour down the road so we can still see dad every other day. stay in a nice timber lodge with a spa and restaurants for some mummy daughter time. We'll see if that helps.

if you mother does not want to go every other day, don't worry about it .don't get upset with her if she still does not want to visit, Just let her do it in her own time when she feel ready emotionally.

.

yes mum is on Metazapan, shes just changed over from Venlaflaxin, Dr said stop for two days then start on Metazapan. Its gone from bad to worse, i keep saying to her to remember its the drugs that are making her feel like this. I will go and spend the next few days with her, but shes getting really stroppy and upset with me. I can do no right anywhere at the moment

my – be she just needs real time out in a nice environment to gather her thoughts emotion together , without the added worry guilt of not visiting your father . Then see how she feel after the 2 weeks with you .

i keep saying to her to remember its the drugs that are making her feel like this.

Also the emotion of how her changing relationship is with her husband, how they life has change together.

 

[makalu]

Assessment complete - dads ready to be 'placed'

Hi everyone,
we have to attend the review at the assessment unit on Wednesday, dad has come on so well with his new treatment and diet that they feel he is ready to be 'placed' somewhere.
I need to prepare myself for the inevitable that he is going to live somewhere more permanent that is not at home.
Can anyone out there give me some guidance as to what questions I should be asking at the review?
Present will be consultant, staff nurses, social, OT etc so for once we will all be in the same room.
I so worred as dad is only 60 and now he is more mobile is taking to un-wiring everything he can get his hands on, with his high insulin dependence too he is going to need intensive looking after, what if he ends up miles away? I cant find anywhere local to Chichester that will take a severe dementia sufferer under 65. Do some places make exception?
What if we were to ask for him to come home what help would be available? But i dont think this could happen cos of mums situation I have to consider her in all this too....plus he is too much of a liability with the wandering and un=doing everything...
please give me some guidance!!
Many thanks

 

[Margarita]

I cant find anywhere local to Chichester that will take a severe dementia sufferer under 65. Do some places make exception?

Yes they do

That is a question you need to ask at the review, as you have to tell them that you do not want your father moved outside your area.

please give me some guidance!!

Am sure someone with more experience then I, that have been to those kind of review meeting will pop in post answer your question

Can anyone out there give me some guidance as to what questions I should be asking at the review?

 

[Westie]

Hi Makalu,

I hope the meeting on Wednesday goes well. As you say, it's one of theose very rare times that you get to speak to all the various people involved with your Dad care at the same time. Make good use of the opportunity and write down everything you need to ask/clarify. Don't be afraid to get your notes out and consult them too, to make sure you don't forget anything.

My husband has Picks disease and is now 54. He was diagnosed 2 years ago and moved into an EMI nursing home a year ago. I understand your problems with finding a suitable place for your Dad. It took me a very long time to locate a home for Peter, but I did eventually and it has been the best thing for him really. He thrives on the routine there and, physically, is much better than when he moved there. He's safe and much calmer than when at home. He goes to bed about 10 times a day for ten minutes and then gets up again, but no one minds at all and he isn't under any pressure to fit in with a 'normal' household timetable. He eats when he wants to or not and wanders around most nights with the night staff.

If the decision is made that you Dad can't return home, they cannot discharge him until a suitable place is found. You will be put under pressure to find somewhere, but TAKE YOUR TIME to get it right. Don't feel under pressure to bring him home either, unless you and your Mum are absolutely convinced that this would work. I got lists of all homes from my local authority and the neighbouring 2 authorities. Then I sat with 2 friends and we rang ALL of them. First question was could they accomodate a 53 year old? Most couldn't/wouldn't but I did end up with a small list of possibles which I then visited. Peter ended up out of borough as there was nothing suitable more locally. It's a 20 minute drive each way but that's better than an unsuitable place on my doorstep.

You've done so well with your Dad up to now and his improvement is fantastic. Stay strong for the next stage....let us know how the meeting goes.

Mary-Ann

 

[makalu]

Hi Mary-Ann thanks for your useful comments. Your poor husband and you - how on earth do you cope? DO you have children/relatives who support you? IM finding it so hard with my mum at the moment, she feels so guilty and is so sad I just cant do anything to make her feel better. SHe has aches and pains and cries all the time, im sure its all down to the depression and the drugs she is on.
Review went ok today, dads put 8kg on, and I have the names of 3 EMI homes that may be suitable in Sussex, Rosemary Park and VAlewood in Haslemere and one in Littlehampton that name escapes me at the moment. HAs anyone heard of these places? So these will be our first port of call.
They are likely to take under 65 such as dad - subject to assessment. General feeling is dad will be looked after under section 117 of the mental health act - which means fully funded due to high requirements. Any experiences out there would be gratefully received, so that we know what to expect!
This is a useful page http://www.mind.org.uk/Information/Legal/s117.htm
and details exactly whats involved. This is reassuring for mum and I that we will have the support from Social Services.
WE now have to look into EMI homes and come up with a list of 3 possibilities that we would consider suitable to dad. This goes to the 'board' for assessment.
There is also a new act coming into force as of 1st april 2009 which means anyone in care in PCT will be getting a 6 part assessment done to ensure that they are in the best placement possible - particularly for those who do not have a power of attorney. This is to safeguard the patients human rights. At first it sounded like we were being told to get it sorted before this date or be prepared for lots of bureaucracy - but when I joked to this effect of course that was denied. This is all from memory and scribbled notes so i may have slight details wrong but this should give u the gist.
Anyway we are feeling more positive and taking mum away to the new forest next week for a few days. Then we will start having a look at some places for dad. We are not rushing into anything.
Will keep you all updated on what is becoming one of the longest posts on here! And once again i really do appreciate TP and all of you who have taken the kindness to reply with all your good wishes and support.

 

[deesee]

how to cope ???

Hi Makalu
iv just read all the comments posted and have cried all the way, it breaks my heart to hear what you've had to deal with and am petrified to what i face in the future.
i am 29, have a young baby and care for my mum who also has FTD.
im having such a hard time trying to keep her out of a home and have always said that i will care for her, only now i dont seem to be fighting the proffesionals but also my 4 other siblings (im the youngest) how can i agree to put her in a home when she's still physically active.
my mum currently lives on her own but is at risk as she's up during the nights and leaves the house, she also smokes. i know she's not safe but should'nt i at least try to have her living with me?????????????
it seems im fighting a loseing battle.
when im with mum i have the guilt that im not doing my duties as a mother and when i spend time with my daughter i have guilt that im not doing my duty as a daughter.
it seems i have no time any more for anything including my recently seperated boyfriend.
how can i give up on her, shes given up sooooo much to bring up 5 children single handed. its the least i can do, IS'NT IT?????
my mum was diagnosed 16 months ago but looking back she's been having difficulties for ALOT longer.
i just want to wake up from this nightmare and her give me a cuddle and say it was all a bad dream!!!
this isnt how i thought being a first time mum would be.

I WANT MY MUM

I want her to come with me to buy baby clothes, get her weighed do the things that she done with my siblings and their children.

iv never felt sooo alone, abandoned and angry

sorry to go on, i dont know what to do

 

[Margarita]

how can i give up on her,

Try not to perceive it as your giving up on you mother if your mother was ever to a care home full time, because your have more time to see to your mother emotional needs rather than all her physical need as the dementia all decline . More time to be with your daughter
Its a very big reasonability, also mentally draining to care full time for someone with a dementia find time for yourself , let alone a young child of you daughter age. You daughter needs your attention now like you did with your mother when you was younger, having your mother in care home would give your daughter that opportunity.

How do you want your daughter to remember you in her childhood, when she a teenager ?
As it can be very stress while caring for your mother, balancing it all out mentally while caring for children, teenagers let a long a toddler or baby .


The decision of caring for your mother is up to. But while you’re grieving for your mother in how she was, compared to how she is now. It’s natural to feel emotion of guilt, anger .
But please don’t make a decision about caring for your mother base on guilt, as it just make you feel more negative in the future, your find it hard to stay positive in the future in other parts of your life , while trying to balance the whole change of life that is happing to do you now.

Try to stay positive, no matter how much negative guilt you may be feeling, as it help you make the right choices in life for you and your daughter .

 

[deesee]

hi
thanks for your comments, i will try to keep that in mind. im finding it difficult at the mo, and not sure what to do.
i trhink i'll wait to find all possible options before making any decisions.

 

[Margarita]

i will try to keep that in mind. im finding it difficult at the mo

Thats understandable(((hugs)))

i trhink i'll wait to find all possible options before making any decisions.

Sounds like a good idea

 

[roundy]

familiar!!

Gosh reading through your posts,it all sounds a bit too familiar. Seems you are where I was about 6months ago,my heart goes out to you. I have 2 little boys,my mum has vascular dementia and she too lived on her own and I also have spent 6months fighting 2 sisters and SS to keep mum out of a home but 3weeks ago she went into a wonderful care home! It still hurts and if anyone ever says to me its the easy option,well you can imagine!! But sometimes its the ONLY option and that kills me to say that because I feel there should be lot more done for dementia and keeping people with it in their homes or in some sort of supported living a care home should Not be the only option but unfortunately the way things stand right now care homes are the only alternative!

The amount of times I screamed "i just want my mum back". This illness is so cruel,no-one knows unless you are going through it,so hard to make people understand so in the end you just don't bother!

I truely understand what you are going through and if you need to talk I am here.

Love Lisa.xxx

 

[roundy]

Sorry.

Sorry,put my post in the wrong place! Sorry again!
Lisa.

 

[roundy]

oops!

No I didn't! My post is for deesee!
Sorry for the confusion!

 

[deesee]

time to recharge and get answers

hi guys
THANK YOU SOOOO MUCH !!!! for all your lovely comments, its true to say i dont think iv cried so much in one week.
do any of you feel tired of hearing your own voice trying to explain to people your views on ftd and the care that ISNT available?
i must apologise to malaku for taken your page up and thank you for yr kind words on my page.
iv recently been told by my mums social worker that we're lucky to have what we have in place, and that she's been generous. (wow i really must remember to thank her) iv been doing a course with mum at the specialist hospital that you mentioned called memory matters and hearing alot of peoples comments there i am quite lucky.
its a lovely course with really friendly people, its hard as im the youngest and they are all ALOT older, its hard as i have had no one to have my baby and take her with me (try keeping a baby quiet for 2 hours)
the weirdest thing is, i get support and somtimes a cuddle from these strangers and its the feeling of being mothered which iv not had for such a long time.(and i miss terribly)
you said that your dad gets annoyed with you and agitated when you vist, my mum is totaly the same, its like iv out stayed my welcome, she huffs when i ask any questions or if shes eaten etc (like im nagging)
and she often gets her coat on to leave so i have to take that as my cue to go rather than her leave, or i need to take her home if were out.
it also seems that as i do alot and see her alot she gets so annoyed with me but when others pop in she's different (for a short while anyway)

i have good news, me and my partner are now back together (i didnt realise it has effected him too, he said it breaks his heart to see me the way i am as iv changed) we just need to keep talking. the poor man i snap and take alot out on him. WE HURT THE ONES WE LOVE
ITS SO HARD KEEPING TABS ON EVERYONE iv not seen friends for ages.
this illness really does have a ripple effect - it affects and destroys families.

we're lucky were near a specialist memory clinic, but even still theres not much research on ftd.
if only i had a crystal ball.
my little girl has just turned 1 and she is my reason to smile and get up in the morning, i dont know where the time has gone.

im going to try to book an app with a specialist solicitor for the elderly to see if i have other options of care. fingers crossed, will keep you informed
i feel that nows the time i need the most energy to act in mums best interest, and fight for her (her language is deteriorating very quickly) all i want is for her to be happy i want that soo badly i wish i could just ask her "mum tell me what to do, what do you want" the time to do that has long passed.
some one told me i needed to mourn my mother, does that mean its ok to give up-I DONT THINK SO
iv been told she doesnt understand/ she wont know where she is-who the hell can be 100% certain as to what she knows and understands, people talk about her like shes gone already!
i get so annoyed somtimes its like im shouting inside
OOPS SORRY FOR GOING ON
(maybe i should keep a diary, its quite theraputic writing my thoughts down)
sorry guys
check in again soon

 

[makalu]

Missing him.

Hi deesee
Talking of keeping a diary, this is what TP feels like! All my thoughts and emotions are here on a regular basis, its weird isnt it.
Just got back from 5 days away with mum. My goodness it was draining. For the first time in nearly a year I sat back with nothing much to do except think about how my dad should be with us. Remembering the last time we went on holiday together and how happy he was, looking big and strong. In June last year when the baby was born even then he was still my dad. Walking round M&S with mum at all the lovely mens clothing - whats the point in buying it? Even thats upsetting. Watching my shadow of a mum pacing up and down at night with her heavy breathing and insomnia that she has now developed. For the first time in ages and ages I had nothing to do to help dad, no phone calls or visits, but actually had time to start missing him. I have missed him of course but hadnt actually sat down and thought about how bloody much.
On the upside we took Isabellas swimming for the first time and she loved it and so did we, it was really special. Shame dad couldnt see it.

 

[deesee]

ups and downs

hey you
its nice youve managed to get away, but bad that you have time to think, its almost like its self torture!!
my mums now on anti depressants for her moods, but i hope to god this solicitor can come up with ideas to keep her out of a home. she coming to my home tues
i have a meeting with my other sibling on sunday (not looking forward to it as the last one was horrible) iv decided to keep my mouth shut (to a degree) as i just get really angry at them even though its not at them personally its this bloody awfull illness. theres no one to get angry at!!!!!!!!!!!!!!!!! its not mums fault.
that was a part of the problem within my relationship, we just stopped talking.
i had a good day with mum on weds but took her to a group we go to called connexions pm-apart of alzheimers society (its for people who are younger)
when we got there mum changed, she had a cut on her head from the night before and i dont know how she done it and neither does she, but it was like she was a child and had to show every one with a face like she was about to burst into tears, it breaks my heart to see her like that. the worst thing was i felt like they might think i had done it (luckily they know me better but its soo hard.)
the same happened on the memory matters course thurs she showed every one and said it hurt so much that they told me to take her to the doctors, but she didnt want to and it doesnt look too bad now, its like she likes the attention from other people but i just seem to annoy her.
she did make me laugh thurs pm she tried to make a cup of tea (i didnt know this till after i had dropped her back home)
i boiled the kettle to put in the pan for rice, when i poured it out the water was black, i took the lid off to see lots of tea bags in there ;-) bless her !!! I WONDERED WHERE ALL THE TEA BAGS HAD GONE
YOU HAVE TO LAUGH
im trying to deal with the anger part at the mo as i seem to be pushing people away and i need all the support i can get at the mo.
my little girl is such a sweetheart she makes me smile when the times are difficult. its an overwhelming love that i had never imagined having.
i cherich the time i have with mum and her, she loves her nanny to bits, she wont leave her alone, do you think kids know?????
mum seems to be getting worse every day and im now wondering if i could cope caring for her, i didnt even know she was trying to make tea till after finding a whole kettle full.
pause for thought i suppose.

 

[makalu]

Hi!

Hi Deesess how did it go with your family? I havent written for a while as been so busy looking at homes for dad and seeing solicitors to sort out getting access to dads affairs via the court of protection, whilst balancing the baby on one knee, supporting mum in the depths of her breakdown, working 30 hours a week oh and having a sickness bug for 3 days. To day life is stressful is an understatment. So now mum has decided to go away for a week, which leaves me short on childcare and right in the middle of having to make a short list of homes to go to social services. Shes burying her head in the sand and is scared of making a decision. I feel like im bullying mum into everything but she is just so weak. I dont know what to do.
Meanwhile, dads quite chipper, the suns been shining and hes been cleaning cars, sweeping leaves and making the nurses laugh! They love him. He hasnt got a clue what we are going through. He said to mum, so have you got a new boyfriend then? OMG how sad is that. I love him so much i want my daddy back. I havent cried for a week but i have to see a counsellor tomorrow and although i am being strong on the outside i am dying inside. I want dad settled for the summer so we can spend quality time together in lovely surrounding, two of the properties we have on our list are beautiful. Dad would think he was in a posh hotel, ones even set in acres of land with a lake, and the groundsman has agreed to let dad help him with the gardening. Bless him. Anyway, Deesee you are right about the children, i think they do know, Isabellas practically been going to see dad in hospital since birth so she knows that she needs to be even more cute and cuddly than she usually is! Thank god for little girls!!! Will let u know how i get on tomorrow with the counsellor. LOts of love to all. Hope the lovely weather brings some sunshine to your life...