Hi new here, looking for support regarding FTD

[EcoGeek]

Hi I'm EcoGeek

I've just joined the forum as about a month ago my mother (who is 53) was diagnosed with Frontotemporal dementia. I am finding this very difficult to cope with as she declined very rapidly (for example just this past september she was functional and speaking properly a few odd memory blips but nothing to suggest that this was coming).

I can't seem to come to terms with the fact that the essence of my mum is gone, I am only 19n and have just started a university degree so I am living away from home currently.

The other family members involved here are my brother who is also away at University and my aunt who lives about 80 miles from my mum.

I know that support and care will need to be arranged for her but i don't even know where to start

any help would be greatly appreciated

 

[makalu]

Hiya, my dad has the same thing and at just 60 is quite far advanced in the illness. Its a struggle to find help, but start with looking for memory clinics in your area or contacting the local altzheriemers society. They will be able to help you Im sure. Does your mother live alone? You could also try contacting social services and get a social worker allocated. If u read my story about dad you may find some useful information there but it is a very sad story of what might lie ahead with lots of ups and downs. Good luck and if I can help further please do not hesitate to ask. I have found this website my saviour since dads been admitted into hospital, I dont know what i would do without all the support and advice I have found here. Kind regards. Nicky

 

[EcoGeek]

Thank you I will look into the memory clinics and local alzheimers societies. She does live alone and although the minister from her church (thank god for him!) is checking in on her regularly I worry about her a lot, especially because she has a tendency to overheat this re-heatable beanbag that helps with her arthritis and she leaves it on flammable surfaces.

Social services are involved but they don't seem to be doing very much other than annoying me (I may be being a bit harsh there but that's how it seems) The only help they are offering right now is the 'meals on wheels' service because my mum has lost a lot of weight. this seems like a good idea until you realise that my mum forgets that she is meant to stay in for this delivery and so I get phonecalls (in the middle of my university classes) to advise me that they couldn't get an answer and is my mum alright because they are worried about her... yeah well so am I now, thanks!

Speaking to my mum on the phone is so upsetting for me I asked her on Thursday where she had been when her meal was delivered and she answered 'teacakes and oranges' which after a few more questions I understood to mean that she had been shopping.

I'm finding the whole experience totally exhausting and my doctor has put me on anti-depressants to help me cope. But I seem to spend all my time trying to be 'ok' and that leaves very little time for practical activities.

 

[Margarita]

Welcome to TP sorry to read that your mother has a dementia so young

I was wondering if social services in your area have any sort of day centre your mother can go to during the day?
As I was thinking like that your mother would have some where to go during the day where she safe, can get a meal.

So you do not get phone calls saying couldn't get an answer and is my mum alright because they are worried about her.

Or

what Social services can do is organize a key safe box outside your mother house , so meals wheels can get the key to let themselves in your mother house if your mother does not not answer the door.

 

[deesee]

you poor thing!!!!!

i am in the same situation where my mum lives on her own,there doesnt seem to be alot of help available that they tell you, however i have found some help from st john ambulance they take mum on trips, give her her meds and a meal.

she goes to a local day centre once a week (meal provided), And we have had some people from solent mind (MIND) take her out for a couple of hours ans take her shopping.
the problem with all these things are if mum forgets (which happens often)i then still get the phone calls telling me shes not at home. so then need to try to find her.


we have applied and been granted a direct payment from the government for 28 hours care where we employ some one to look after mum, however this doesnt seem to be enough.

please ask your social worker it seems whoever shouts loudest gets heard.

call age concern they do a befriending scheme where thay may have volunteers to pop in to see you mum for a cuppa.

they should give you a booklet of all the people that may be able to help, but seems there isnt one made.

its taken me 16 months to get things in place with alot of phone calls alot of tears and sweat,weve only got what we have through me nagging/ calling and not giving up.

and now am in the process of trying to keep her out of a home as she can no longer live on her own.

its not an easy time ahead and i wish you all the luck
its hard work and emotionally draining, all i want as im sure you do to is the best for my mum.

please take a look at my page your story is very similar.

if you need to talk or have any questions please ask!!!

YOUR NOT ALONE !!!!!!!!!!

 

[Bookworm]

Sorry

Hi Ecogeek - I did not see your earlier post - so I'm very glad you came back with a new thread - I hope you have your University lecturer(s) on board about your stressful situation. If things go downhill faster that you anticipate you could take leave of absence - well anyway - worth discussing with lecturers - your main contact will be studies advisor, course director, year tutor, students services, student counselling - the names/titles will vary depending on your Uni but you know the kind of people. This may well pull your marks down a little & the Uni need to be clear that you are under pressure.

I think that bean bag is just going to have to go!! Or let it live with a neighbour or volunteer who takes charge of heating it!!

I'm glad you have the minister visiting.

 

[Amber 5]

Hi Ecogeek,
How often do family members get to visit your mum? I am amazed that you aren't getting any help, so do hope that as a result of your questions on here, that some extra support will be put in place. My mum was referred to the Memory Clinic by her GP and at the same time a SW was sent to assess her. Meals on wheels didn't work (she didn't like them) so now we get Wiltshire Farm foods delivered every couple of weeks, so a meal can be heated up in the microwave. Since then she has carers coming in am and pm to prompt her to take tablets. (Is your mum taking any tablets and how does she manage those?)

If your mum becomes a danger to herself whilst living alone, it will no doubt end up with either carers or a move to somewhere safer. This is such a responsibility for you though - you need to know that mum is safe and be able to have some peace of mind, whilst you are at uni. It is definately a good idea to let your tutors know about your situation and (if there is an admiral nurse in your area, either at home or uni town - they would be a great help to you - although I know they are few and far between). Maybe it would be a good idea to get in touch with the local authority department who deals with young adults too, they may be able to support you and your brother, as well as the social worker for your mum.

The situation will not improve, so it sounds like the authorities do need to be told about anything/everything you are worried about and I hope that help will be available for you. This is a difficult situation to be in (I know from a personal point of view as I live 2 hrs away from my mum and get those calls that make you feel sick with worry. I am a lot older than you and am not trying to study at Uni though!)

Let us know what happens.
Lots of love
Gill x

 

[EcoGeek]

thanks and answers

Thank you all for your kind words of support its nice to actually get advice rather than just sympathy (my friends don't know what to say to me)

My university tutor is aware of the situation I actually got him involved before the official diagnosis. He is very supportive and has told me that the most important thing is for me to look after myself and my mum and that he will help me get special consideration on any assessments due to my circumstances.

The only family my mum has now is myself, my brother and my aunt. All of us live at least 70 miles away from her.

I am currently actually at home, just arrived back today. The house is actually tidier than i expected (i wonder if this is the work of her mental health nurse)I've only been home a few hours, and for a lot of that my mum has followed me round the house (for no reason I can discern) and for some odd reasons he has a seashell attached to her hand with an elastic band!!! Since I had just returned I decided to go out to get my lunch from the local chippy, I asked her if she wanted anything she said no, I asked her if she'd eaten and she said no again, she doesnt think meals on wheels have delivered today but im not certain. I returned with my chips and she followed me around again and once i'd unwrapped them she just started eating them!!! So i tired again 'mum you said you didn't want anything from the chippy' she nods vigorously as she stuffs more of my chips in her mouth, 'mum you said you didn'nt want any, do you want me to make you something to eat' she shakes her head and continues to steal my chips.... i finally got some peace.

After i'd eaten i had the delightful job of cleaning out the cat's litter tray which my mum seemed to have half cleaned a while ago, (weeks? a month or two?) and because last time she had cleaned it she had not put in any litter grains/gravel the entire house smells like cat pee!!!

Sorry for the rant I'm just so stressed and I have to survive a week in the same house as her.

Eco

 

[Bookworm]

The cat problem

We've alluded to declining ability to care for pets on these threads before - I guess you don't want to deprive her of the familiar - but your mum's inability to care for herself means the cat is probably not fed properly or let out appropriately. Would a compromise - (keeping the cat but getting it better cared for) be a volunteer i.e. neighbour - maybe a couple on a rota - going in daily for the cat care? Not every one would know how to help your mum & might not want to get involved - but would easily sort the cat out. If you are back every week - then two cat litter trays might help the cat to feel it can go somewhere fairly clean - they are rather hygienic animals & won't "go" where there is a hateful mess.

If your mum is not eating - or able to remember to eat, or unable to prepare a small meal - then support in the home has to be found urgently, & if not forthcoming then I think you know she needs to get more support outside of the home e.g. day care, respite or more long term.

Please don't apologise for a rant - we all need that - & yours was very mild!!

 

[Helen33]

Hi Eco

Regarding the meal. With my husband having FTD I recognised something of what you were saying You were asking your mum if she wanted anything (she probably couldn't understand what you were saying). Then repeated "mum you didn't want anything from the chippy" and mum nods. (She probably didn't understand what you were saying). FTD does affect language and I discovered that my husband is very clever in making out that he understands when he doesn't really

Love

 

[EcoGeek]

back again

... and exhausted!

The cat is at a cat and dog shelter now, I hope she gets adopted by a nice family who can care for her properly. I was home for a week and I've been back at University for almost a week now and I just feel thoroughly exhausted, despite sleeping for 14 hours last night. I figure it's emotional exhaustion rather than physical tiredness. And I'm going back home again next wednesday!! Yay! (not)

And I have this story to tell from Uni today,

I was in a class this afternoon that I didn't really want to be in, its felt like a really long week and then the female lecturer says we are to be split into groups (with people i dont know/like). I felt this was the last straw and I felt so near to tears that i grabbed my belongings and left the room as quietly as i could, not wanting to disturb the class further. I went to my locker which was just along from the lab room. Apparently (my friends were still in the room) the female lecturer asked indignantly 'Has she left?' Then said to those who were sat nearest the door 'If she tries to come back in lock her out.'

The male lecturer then walked along the corridor ,past me at my locker, and into the room. He then came out again (after having a brief conversation with her, which my friends reported as her moaning to him) He came up to me by my locker and asked me 'what's wrong?' I explained that I just couldnt handle being in the lab and I explained how I had been having a bad week because I had been home with my mum the week before. Since he had prior knowledge of my situation with my mum he didn't ask any further. Probably also because as I was talking to him my vioce was catching in my throat as I was so close to tears. He asked me if I was headed home and I confirmed this and he told me to take care.

I believe he went and shared this information with the female lecturer, but I still feel the need to apologise to her, even though she was being less than polite about me... I know she didnt know the details before-hand but surely she could've given me the benifit of the doubt... I feel angry at her and at me...



Plus I keep having vivid dreams that my mum is well again and that I've spoken to her and that she is back to her normal self... then I wake up :-( feeling very sad today, although I spoke to my brother briefly earlier so that helped a little bit.

I just want a break where I can go away somewhere where I'm not expected to study or be brave for my mum, or care for her, or battle with her over seashells....

How do you guys cope when you feel like this, as I imagine many of you have done at various times?