I care for my mum with FTD

Mikemanc

Registered User
Dec 3, 2015
16
0
Hello,

I'm new here just joined today so I'll give some background before I ask a question.

My mum was diagnosed nearly 3years ago with FTD she is now 55. She's since had her license revoked and cannot any longer work. I have one older sister and we now all live together.

Mum still won't admit that she has FTD to herself. I came out of work a year ago to become her full time carer. Over the past year I have seen a decrease in my mother, she of late is becoming very angry all the time. She mumbles about things every second of the day. Her moods are all over the place from laughing and loving to angry or uncontrollable crying and telling me she wishes she was dead. As her son this is hard to hear so often and as strong as a person I always was over the past year I'm finding its starting to beat me into the ground.

She seems to live off a few hours sleep a night and she's always up at the crack of dawn and if you don't get up just before her then she is in a terrible mood till late afternoon.

She has difficulty keeping herself clean and for the past couple of months my sister has had to stand in the bathroom with her telling her what comes next in the showering process, luckily we have each other to help out with different situations.

Now because I've seen the decline over the past year I'm starting to wonder at what point will it become too unmanageable that we can no longer care for her? There are days when she hates me and screams and cries all day long. If I'm honest I feel like I'm coming to the end of my teather and feel like a terrible son for not being able to cope any longer. My sister helps a lot but she works and we can't afford for us both to be out of work, We have a big family who have been extremely disappointing with help or even just a phone call to see how we and mum are doing. every day is becoming a struggle. We have to keep the doors locked at all times but then that makes her worse like a caged animal and then I feel like I'm causing even more unnecessary pain for her and have taken to leaving them unlocked and a coat near by to run out after her and follow her down the street. I'm hiding behind cars and phoning family ahead when I know where she's going so she doesn't see or hear me.

I feel like I'm stuck and I am loosing all hope. Is anyone else going through any of this? Isit just us? Or is there anything I can do?

She also has no attention span so doing things with her are over in a minute when she gets bored. Her concept of time is way out of the window, and first thing in the morning she thinks it's late at night and by dinner she's shouting about how it's ltr and no one is home.

Any help off anyone would be great, thank you.
 

fizzie

Registered User
Jul 20, 2011
2,725
0
Hello Mike
I don't have any direct experience but I just wanted to say that I can hear what a difficult time you are all having and I'm really sorry. There is quite a lot of practical help and I see from a previous post that you have accessed PIP. Do you belong to a local carers organisation? It would be well worth looking up your nearest one and going along as they will be able to help with a carers assessment (or you can apply to social services) so that you can have a break from caring.
Also your local Alzheimer's Society group will have things going on that you can go to with your mum (or without) and meet others in your position - sharing is really helpful and you can often get some really good tips and it does help through difficult days.

It does sound as though you are very isolated. One thing about dementia is that it is absolutely no good trying to persuade someone that they have a problem - they won't accept it and it just causes distress and frustration. There is a really useful information leaflet here
Here is also a very useful link called compassionate communication -
http://www.alz.org/greaterdallas/doc...ionateComm.pdf
which might help - i found it incredibly useful and it sat on my fridge as a constant reminder as I really wasn't very good at it lol!! It is an art!

take care of yourself too
thinking of you xx
 

Mikemanc

Registered User
Dec 3, 2015
16
0
Thank you

Thank you for responding. I just don't know what to do any longer, me and my sister are viewing it very differently. I see how bad mums getting and my sister only sees the good. I don't know which ones worse, me for acknowledging what's happening or my sister who doesn't want to accept just how bad she's starting to get.

I just never thought at this age I would be in this situation. I love my mum with all my heart but part of me feels like I'm having my life ripped away from me while I'm caring for a woman who half the time hates me or (thankfully only occasionally again but this flares up and then slows down every now and then) doesn't fully know who I am.

Thank you for that information it will give me a chance to read it and hopefully give me that extra boost I feel like I'm starting to need ATM.

X
 

Cat27

Registered User
Feb 27, 2015
13,057
0
Merseyside
Welcome to TP Mike.
You are not a terrible son you are a fantastic son.

I think you need to get some help in place now so agree with fizzie about you contacting social services & the Alzheimers society.
 

marionq

Registered User
Apr 24, 2013
6,449
0
Scotland
Mike when extreme behaviour beats you down then you need outside help. A carers assessment might bring in a Befriender or something similar to take your Mum out for a couple of hours and give you a break. I would also be phoning the Memory clinic and the CPN to get a review of her condition and her medication.

You will not be able to continue like this without some help as this behaviour will likely continue for some time.

Good wishes.
 

fizzie

Registered User
Jul 20, 2011
2,725
0
Mike what everyone says is so true - you really do need help. Social Services may be able to offer a day centre for your mum which would help her and help you too. Once you start to reach out to the services you will be surprised at all the options there are out there - it will seem so much better as soon as you have people helping you along the way.
 

Mikemanc

Registered User
Dec 3, 2015
16
0
Thank you so much for the information. I was trying so hard for so long I was just scared of the day I couldn't do it alone any longer but didn't know what to do or where to go.
 

fizzie

Registered User
Jul 20, 2011
2,725
0
Well Mike you are not alone, so keep posting on here, there is always someone to help or suggest things that might help or just to say 'hello' on those days when everything is a bit much.

Thinking of you. Let us know how you get on x
 

River15

Registered User
May 28, 2015
9
0
Mike you sound like a very strong and amazing son! I don't have any advise sadly but feel free to message if you do need to speak. My mum has been diagnosed with early on set Alzheimer's but I don't live at home anymore. Although she does often stay with me and most recently she got really angry and threatned to run away and she kept wondering in the night. The whole trip was horrendous and left me feeling so sad. I think it's important to see your doctor feel like your not coping to discuss options and to get support for yourself.
X
 

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