Feeling so tired, tearful, irritable and guilty!

Allypally67

Registered User
Feb 20, 2016
21
0
West Sussex
Hello to anyone reading this!

I have spent the last few days feeling so low and alone. My mum is only in the early stages of AD but she has seemed worse lately and I just don't know where to turn!
I know that a lot of people on here have much worse to cope with and feel I am really letting everyone (especially my mum!) down! I just feel after a year of coping with mum alone, and 11 weeks after finally getting the diagnosis, that something has got to change but it just seems to be a case of "you need to..." and being passed from A to B all the time. I don't seem to be getting anywhere!
Don't get me wrong, the people I have spoken to have all been very kind and have told me places to contact etc. but sometimes I just want someone to say " I can..." or " I will..." . I have always hated making phone calls, I always get very anxious and panicky over what to say but feel the last year has been constant calls and I feel physically drained and feel on the verge of tears all the time. I have cried myself to sleep 3 out of the last 5 days and am getting very irritable and snappy with mum. I then feel extremely guilty as none of this is her fault it is the disease and the systems that are all so complicated!
I have filled in the forms for LPAs and have just been told mum will receive AA and extra relief for Council Tax and rent. It just seems never ending and I can't see any light at the end of the tunnel. When I read the other posts I know I have worse to come and feel so inadequate.
Thank you to anyone who has persevered to the end of this!!! I just needed to tell someone how I feel! Hopefully I will be able to sleep better now I've said it!
I will try to be more cheerful in my next post. Goodnight TP x
 

fizzie

Registered User
Jul 20, 2011
2,725
0
Please don't try to be cheerful, we've all spent time in that dark place that you are in at the moment. It's sometimes a mixture of fear and exhaustion :( and grief and worry about the future.

You have done incredibly well to get all that paperwork sorted in such a short space of time so it's really not easy to get through it all and although there is bound to be more to come you have the basics in place.

Perhaps the next step might be to take a step back and think about yourself? Our carers cafe is a really great place to be, we all look forward to going, having a chat and not having to explain why it's tough because people understand and we get a free cup of coffee too :) Try googling it in your area and see if there is one - you can get loads of local info without trying very hard.

Our local carers organisation also has discount cards for carers and sometimes free massages and aromatherapy.....mmmmmmmmmmmmmmmm
A carers assessment from social services could be an idea too, to give you a break?

I think you should give yourself a pat on the back for being a great daughter and for doing so much so quickly xxxxxxx
I hope you get some rest, keep posting xx
 

Kevinl

Registered User
Aug 24, 2013
6,052
0
Salford
I just want someone to say " I can..." or " I will..."

I know where you're coming from Ally, it's always "why don't you..." or "have you tried..." never "I can help". Real people that help are a bit like a unicorn, people say they exist but I've yet to see one.
We all have bad days, I hope tomorrow is a better day for you:)
K
 

susy

Registered User
Jul 29, 2013
801
0
North East
Now you finally have that diagnosis can you get some input from social services to help you out? Things like carers coming in to help out with washing. They could possible offer some sort of sitting service so you can go out on your own! Ask the local Alzheimer's society if there is anything in the area that you could go to, or age uk if that's better.
Whatever you do you are not the only one on this journey. This place is an absolute life line to me right now and I'm sure will be again and again. You will pick up loads of information from reading alone and there is no such thing as a stupid question either.
I wish you all the best on your journey with this. X
 

Beate

Registered User
May 21, 2014
12,179
0
London
Give yourself a pat on the back for having achieved so much already!
If you feel you can't cope with chasing people on the phone, try to find out whether you have a local carers centre that could advocate for you. They're quite good in kicking butt! You could also try counselling - our borough gives free counselling to carers though that's probably different per borough.

And you know, sometimes things get easier once you've got some help in place, established a certain routine and filled in all the forms you can think of. And you can get used to things. You might not think you can now, but you might surprise yourself. Setbacks can always happen, downturns, clueless social workers, added health problems. But try to cross every bridge when you come to it. Dementia doesn't answer to a five year plan, so just do the best you can and feel able to and don't forget your own well-being.
 

marionq

Registered User
Apr 24, 2013
6,449
0
Scotland
I think you're at the stage where dementia is a 24 hour concern. So many people to speak to and so much to do that you feel yourself disappearing under the weight of it all. One of my solutions was to buy a big A4 diary right at the start and to fill in all our appointments and needs and concerns every day. The back two pages I used to write down the names, jobs and phone numbers of everyone I was dealing with so that I could get back to them with questions or quote them to the next person I was dealing with.

Now in our fourth year I am not quite so nit picking about this because I feel I have a handle on how it all works. At first I could not separate the people fromNHS, social work and charities who work alongside social work. It was all too much information and too overwhelming at the same time as dealing with my husband.

Not much gets better with this illness but understanding the system is one of the few things which improves.

Dont be hard on yourself. Look for small ways to make life better. Good wishes.
 

Dustycat

Registered User
Jul 14, 2014
215
0
North East
Oh Allypally I know how you feel and I've been there. It is so overwhelming and every solution seems to throw up another problem or another thing to do. Both my parents had dementia. I lost my mum 2 years ago and my dad is now in care. It still feels never ending as being in care alleviates some of the worry but there are still finances to sort etc. I am also a big fan of the things to do list. It's my life line. I always find breaking things down into what's most important and what can wait also helps.

Xx
 

jorgieporgie

Registered User
Mar 2, 2016
1,982
0
YORKSHIRE
Morning Allypally,
Hope your feeling a bit better this morning. We all have days like that when you cry from morning to night, but that is us a good thing we have to release our emotions sometimes or we would crack up. I am alone looking after Mum and not afraid to say do take anit-depressants just to take the edge off. It is a long tiring journey to look after someone 24/7 but somehow we get through. Keep strong and don't be afraid to ask for help. xx
 

Allypally67

Registered User
Feb 20, 2016
21
0
West Sussex
Thank you to all of you for reading and answering!
I know this is a long haul job but I have to get through it somehow.
I am on anti-depressants but sometimes it just doesn't seem to help! Most of the time I am ok but the last few days I have just felt it was all too much. It's also now 1 year since my dear dad died after a short battle with cancer and I don't really feel as if I've had time to grieve as I have been dealing with all this other stuff!
I did manage to get a bit more sleep last night and am feeling a bit better this morning.
Thanks again. Being able to say it and not be judged harshly really helps!!!
A big virtual (((hug))) to you all and anyone else who knows what this really feels like.
Allypally67 xx
 

Otiruz

Registered User
Nov 28, 2015
253
0
Kent
Thank you to all of you for reading and answering!
I know this is a long haul job but I have to get through it somehow.
I am on anti-depressants but sometimes it just doesn't seem to help! Most of the time I am ok but the last few days I have just felt it was all too much. It's also now 1 year since my dear dad died after a short battle with cancer and I don't really feel as if I've had time to grieve as I have been dealing with all this other stuff!
I did manage to get a bit more sleep last night and am feeling a bit better this morning.
Thanks again. Being able to say it and not be judged harshly really helps!!!
A big virtual (((hug))) to you all and anyone else who knows what this really feels like.
Allypally67 xx

Hello Allypally67, yes I too can really understand your post, it mirror's my experience of 3 and half years post Dad's death coping with Mum's increasing dementia, her denial of it and of needing help. It's the overwhelming feeling of being unable to cope, frightened about what's coming next, the solitude it makes you feel and the resentment that your own life seems to be on hold. Add the death of your dad, who you have not even had time to come to terms with and it's no wonder you feel as you do. BUT you have already proved how capable and determined you are to put everything in order for your Mum. Stay resolute - you will have wobbles - I had loads but TP was a brilliant boost to my confidence and knowledge. No one understands like the people on here - even the professionals, who send you round in circles often have an 'office' based knowledge! Be prepared to love your Mum whilst hating the disease whilst being kind to yourself.
 

looviloo

Registered User
May 3, 2015
463
0
Cheshire
Allypally67, it's incredibly frustrating isn't it, that the form-filling and all the administration seems to take so long...and this on top of all your stress and grief. You sound a little like me, a bit of a perfectionist? I could never see the 'end point' of anything and it caused me a good deal of anxiety, because I like to finish things, and never seemed to be able to get anyone to help do that! The systems are so bloomin' complicated.

BUT you are doing brilliantly even though you don't realise it. We're only human and we're struggling against a system that can't really cope, so you've made huge progress in a short time. Be good to yourself, whenever you can :). Don't beat yourself up. In the end it's just you and your mum that matter... x
 

nae sporran

Registered User
Oct 29, 2014
9,213
0
Bristol
Allypally.
Others got in already with the best advice to contact your local Carers Advice Centre and try to get a Carers Assessment, the latter got me a grant which paid for massage therapy which was welcome after a stressful winter.
Glad you got some sleep too. A big virtual hug to you.
 

Jaypee

Registered User
Mar 22, 2014
6
0
Latchi, Cyprus
Allypally. I've just taken over looking after my mom with dementia in the last 12 months. If anyone had asked me I would've said I was one of life's "copers", but 2 months ago I had such frightening chest pains, tingly fingers and nearly passed out several times that I went to A and E convinced I was having an angina attack. Tests showed nothing, diagnosis acute anxiety. Went to a therapist who has shown me that carers need to find tine to do things to comfort themselves. We get so caught up, running around trying to be the perfect carer that we forget our own needs to do things that make us feel relaxed and happy. We need to put our needs first because without us, our parents have nothing. Forget the anti depressants ... ask your GP about counselling or talking services. You need to let off steam, get some relaxation exercises and some coping strategies. Good luck!! Ps I feel SO MUCH better after 6 weeks and back in control xx


Sent from my iPad using Talking Point
 

CollegeGirl

Registered User
Jan 19, 2011
9,525
0
North East England
Just want to send you a huge hug, Allypally. You are doing a very, very difficult job, one of the most difficult jobs in the world, I feel, having watched my dad do it for several years now, helping when I can but feeling totally inadequate.

You most definitely haven't let anyone down. I hope someone does come along who will do some of those tasks to help you.

xx
 

MollyD

Registered User
Mar 27, 2016
1,696
0
Ireland
So glad you found this forum, Allypally.

It could have been me writing those words. Still could. But keep reading and posting. Advice, pointers and kind, kind support filters thru' the fog. It may not happen in a linear way but at the strangest moment, I've found myself recalling things people have posted to me whether it's been reassurance or uncompromising red flag advice. People here really *know* what they are talking about, at every level. Hopefully, it provides you with the support you so sorely need.

Hugs and welcome. ♡
 

Bill Owen

Registered User
Feb 17, 2014
182
0
71
BRIDGEND
Been there my self

hello to anyone reading this!

I have spent the last few days feeling so low and alone. My mum is only in the early stages of ad but she has seemed worse lately and i just don't know where to turn!
I know that a lot of people on here have much worse to cope with and feel i am really letting everyone (especially my mum!) down! I just feel after a year of coping with mum alone, and 11 weeks after finally getting the diagnosis, that something has got to change but it just seems to be a case of "you need to..." and being passed from a to b all the time. I don't seem to be getting anywhere!
Don't get me wrong, the people i have spoken to have all been very kind and have told me places to contact etc. But sometimes i just want someone to say " i can..." or " i will..." . I have always hated making phone calls, i always get very anxious and panicky over what to say but feel the last year has been constant calls and i feel physically drained and feel on the verge of tears all the time. I have cried myself to sleep 3 out of the last 5 days and am getting very irritable and snappy with mum. I then feel extremely guilty as none of this is her fault it is the disease and the systems that are all so complicated!
I have filled in the forms for lpas and have just been told mum will receive aa and extra relief for council tax and rent. It just seems never ending and i can't see any light at the end of the tunnel. When i read the other posts i know i have worse to come and feel so inadequate.
Thank you to anyone who has persevered to the end of this!!! I just needed to tell someone how i feel! Hopefully i will be able to sleep better now i've said it!
I will try to be more cheerful in my next post. Goodnight tp x

first of all do not knock you self .any one who looks after anyone with this illness .his in my book a hero. I been there my self .first take time over things you have to do ther is no rush like by today or tomorow it will all get sorted out .do get some home care in its a mast .sorry im dislx so bare with me.it will get wose. But be strong on you time off go out with frend for a drink or 2 or 3 or 4 or 5 or 6 or 6 or 7 or 7 hops im ****ssssssss now,
 

jknight

Registered User
Oct 23, 2015
807
0
Hampshire
Thank you to all of you for reading and answering!
I know this is a long haul job but I have to get through it somehow.
I am on anti-depressants but sometimes it just doesn't seem to help! Most of the time I am ok but the last few days I have just felt it was all too much. It's also now 1 year since my dear dad died after a short battle with cancer and I don't really feel as if I've had time to grieve as I have been dealing with all this other stuff!
I did manage to get a bit more sleep last night and am feeling a bit better this morning.
Thanks again. Being able to say it and not be judged harshly really helps!!!
A big virtual (((hug))) to you all and anyone else who knows what this really feels like.
Allypally67 xx

Ally,
I am in a similar place. Dad died 2 years ago, from cancer, and I also feel I have never had the space to grieve as Mum needs so much support.
Mum was formally diagnosed, early December and her short term memory has declined significantly since then (strangely, her MMSE score is still the same)
I also feel bad for struggling when so many of the wonderful people here are dealing with much worse, on a day to day basis!
Sending you hugs
J x
 

Allypally67

Registered User
Feb 20, 2016
21
0
West Sussex
Thank you so much to everyone who has read and answered my post!!!
It really has made me feel better and much less alone!
I have made a note of suggestions and really appreciate you all taking time to offer advice and support. I know very well that time to yourselves is precious.
Big (((hugs))) to you all :)
Allypally x
 

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