Fed up and guilty

POPPIT

Registered User
Nov 5, 2008
124
East Yorkshire
Hi everyone, well as the heading says I have had enough and feel guilty but feel I can't do this anymore. Going on4 years caring for mum and it feels like it is driving me mad. Marriage suffering now because all I think and talk about is my mum and friends don't seeem to come around now as all I talk about is mum. I don't want to go anymore everyday, I am sick of cooking dinners every day, cleaning every day, repeating myself 50 times a day, sorting money, having wait in for hours when council need to call, getting called in middle of night by lifeline. We do have 4 carers going too everyday to give meds but we do most of the work. If mum knew me I would not mind but she is not even aware she has family now, she does not even know her own name! All mum does is get up eat, put back to bed to sleep, up again to eat then back to bed and so it goes on and on and on, day in day out. I know I should see my doctor to sort myself out but I feel guilty then I think why should it get to this state and why have the powers that be let it. I have contacted social services but all I get is "she is safe" . I just want to walk away, there I have said it, but oh does it make me feel bad. What do I do please. Mum completely refuses respite for a week and she is so advanced she can't go to a day centre, she can't see much so no tv or reading, nothing but sleep. She sleeps like a baby and I am awake all night with worry and now resentment and I hate myself for it.
 

daddykins

Registered User
Jul 14, 2012
148
Portland, Dorset
Hello POPPIT, I've just seen your post and can empathise with your post.
My wife has Vascular Dementia amongst other things, and I am her sole carer.
Having thought about what you have said I would most earnestly suggest the following;
You must make 'ME' time, do something just for you, and possible your family, where Mom does not enter. Some people on hear suggest a massage, I have no thoughts on this as I have never had one. But something different just for YOU!
I would also suggest that you do go and see your doctor, depression can creep up on you and be quiet devastating if not treated.
As for your thoughts of just walking away, I've had them. It's not a nice thing but they do sometimes appear out of nowhere, probably from a bad day, which we all have from time to time.
If you wish 'a shoulder to lean on' you can PM anytime.
 

FifiMo

Registered User
Feb 10, 2010
4,710
Wiltshire
Poppit,

You need to get things back to the point where you can visit your mum as her daughter and,not as her full time carer. I suggest that you phone the duty social worker today and tell them that you have a carer crisis and that your marriage is in danger of breaking down. If they say but she is safe, politely ( if you can) point out that she is only safe because you have to be there all the time and that 4 visits to give medication is certainly not what is making her safe!!!

Strike now whilst the iron is hot and it might be better today because you'll get the duty social worker rather than waiting for the every day one.

There is no reason to feel bad or guilty because you are doing the right thing. You are getting your mum the attention that she needs!

Fiona
 

Sweetcheeks

Registered User
Feb 3, 2013
27
Northwest
Hi Poppit!

You've got friends here, it's awful for you and we can all understand what your going through. It's very difficult but you will have to think about full time care for your mum. Your marriage and your sanity must come first. Do you have a social worker? The situation you are in is not fair on your mum or you and am surprised that if your mum is quite advanced nobody is advising you on your options. It's such a difficult step to take but one you have to consider for your mums well being, knowing your mum would be looked after 24/7 would be a huge weight lifted from you. It is very hard at first but you will adapt eventually I know from my own experience. When we love someone very much we have to put the guilt aside and do what's best for everyone! It may sound harsh and I don't mean it to sound that way but if you don't the consequences could be worse. What your coping with is much to much for anyone to cope with and eventually you will crack under the strain. Please contact someone on Monday morning...be brave Poppit, there's lots of good people here who will advise and help you. I hope you find the strength to do what you must.
 

Dazmum

Registered User
Jul 10, 2011
10,314
Horsham, West Sussex
Hi Poppit, I agree entirely with Fifimo as always, she is absolutely right with her advice.

I empathise with what you say completely about the pressure on your marriage and only being able to talk about your mum to friends and anyone who would listen, as it is all you can think about. I was there too just over a year ago. You owe it to yourself and your marriage to get some help, and get your life back, so please don't feel guilty; that's easy to write and hard to do, but I promise you will get there in time.

Do go and see your GP for some help too, as it is clearly affecting you and you need to keep healthy, menatlly as well as phyiscally.

As Fifimo says, call SS today. Good luck, and keep posting xxx
 

POPPIT

Registered User
Nov 5, 2008
124
East Yorkshire
Thank you so much for your quick replies, Sat here waiting for them desperate for someone to talk to who does not get sick of hearing me. We do have an assessment in March but they only seem interested in mum not how we are. I wish they would go and see her without me being there just to see how bad she is but because we do all the talking and planning for her they don't see what she is like. I am going to see my doctor next week but I am so scared he says I am depressed. I do get alot of "me time" but no matter what I do mum is there in my head 24/7! That is what scares me so much, mum has Alzheimer's,her dad had mental health problems and I can't help wondering if I am next. Someone asked me the other day if I was older then my sister who is 65 , I am 55 but I am old before my time with all the worry, and a comment like that did not help. Ha ha. I suppose in a way that is another branch of caring, I am getting older should be enjoying life but feel it passing by. Oh that is so selfish a thing to say. I do love my mum so much and I feel so rotten talking like this, she brought me into this world so it must be my duty to care for the rest of hers.
 

end of my rope

Registered User
Feb 22, 2013
146
Hello Poppitt

I don't know if you have children I have one daughter and a mother who is driving me crazy through her illness. But as soon as I saw how things were with my mother I made my daughter promise me that she will not, never, nohow, sacrifice her life to me should I develop alzheimers. I have also promised her that i will take up skydiving when i hit 75 ;)!
You must make time for yourself and give yourself some space. You are not your mother's insurance policy you have a right to your own life too.

One last thing - drafting this note to you has made me realise how much of the advice i'm giving to you applies to me too - so thank you for your post - you've helped me see things much more clearly. This afternoon I'm going to go visit a little shop which sells things that look slightly french and very pretty just to give myself something different to do. I'm even going to put some lipstick on so that I look more like a human being.

Biggest hugs and thanks to you
 

FifiMo

Registered User
Feb 10, 2010
4,710
Wiltshire
Poppit,

If you go on as you are doing then you are increasing the risk of ending up with mental health problems from all the stress you are under. You seem to think that caring involves you having to give cover 24/7. If your mum broke her leg would you fix it yourself? If she had toothache would you take the tooth out yourself? Of course you wouldn't. Your mum has dementia and she needs specialist help which is not within your gift to be able to supply and so she needs to be somewhere that her needs are met. It is no different to the broken leg or the toothache.

If you feel you have a duty, then you do. That duty is to make sure your mum is somewhere where all her care needs are being met. It is not your duty to try and do this yourself. If there was no need for care homes because everyone had a duty to do the caring themselves then they wouldn't exist. They are there because people's needs are such that specialist round the clock care is necessary.

Make the phone call and I can guarantee that you will feel better immediately.

Fiona
 

POPPIT

Registered User
Nov 5, 2008
124
East Yorkshire
Dear end of my rope. Thank you so so much your reply cheered me, glad my post helped you too. I need a kick up the backside some days to motivate me and reading my thread back makes me too think "get out there girl and do something", not sit here feeling sorry for myself, there are so many worse off then me but right now I feel so weighted down with it all. I am determined to get help though and not be a martyr, starting Monday. THANKS TO ALL ON TO.
 

Christin

Registered User
Jun 29, 2009
5,038
Somerset
Hello Poppit, I am so sorry to read this, I remember going out with a friend one day and someone asked me if I was her mother. I was horrified, and so upset.

Can I suggest that you write a list of all the things that your mum cannot do for herself, make it clear how dependant she is on you for her safety. I searched the net and found a document asking if the person being cared for could use a Phone, a kettle, a toaster, wash, dress, etc, and I suddenly realised that my FIL had not done any of these these things for sometime. It crept up on us all. When you have your list send it to your GP, to social services, and mental health team, make it clear how much you do and that you cannot continue. You may have to press this point.

Also, you are entitled to your own assessment as a carer, so insist on that too. I had a support worker, for me, and she was brilliant.

My FIL also refused respite but it was necessary and proved a godsend in more ways than one. The first time, he went to a residential home and they refused to have him again. For the first time someone else witnessed what we witnessed daily.

It is very hard to step back, but, if it helps, may be ask yourself what your mum would say if she was well.

My very best wishes to you, Poppit. I really hope you are able to get some help very soon. X
 

POPPIT

Registered User
Nov 5, 2008
124
East Yorkshire
Hi Christian, thanks for reply, yes have made numerous lists in past but not necessary now as the simple answer is mum can't do anything without help apart from using loo, she can use it if she can find it, never washes her hands after or flushes loo! A few times when I have arrived in morning have found her with poo under her nails and know for a fact she would have eaten her breakfast in that state, given to her by carers. Mum never gets dressed, can't make any sort of drink herself not even turn a tap on. She won't drink unless prompted or eat, can't see just feels around till she feels something. Breaks my heart to see her like this every day yet she is happy in her own little world in bed. She can't use the phone or open an outside door, we just pray she does not have to get out quick. She can't press her own lifeline button as forgets it's on her so we have pressure sensors that alert us. Still gets to me though how they all think she is safe and well.
 

Christin

Registered User
Jun 29, 2009
5,038
Somerset
Hello Poppit, I do understand what you are saying, these were our experiences too. I just felt that others didn't realise this as FIL would nod and smile when anyone came to visit. Putting it all in print made sure that others were aware.

I hope you can sort something soon. Xx
 

POPPIT

Registered User
Nov 5, 2008
124
East Yorkshire
Rubbish

Hi everyone just wanted to update you all on my last post. Had social services and homecare visit because I have been nearly at breaking point. Well got absolutely no where, they came, assessed mum and said she is safe and fine, unbelievable. And listen to this, the morning they came I and my sister got there before them, mums hand looked real dirty and on closer inspection her hands and nails were once again covered in dried poo, we got there at 8.30 the carer had left half an hour before and given mum her breakfast with her hands like that. On inspecting the toilet it was all over the soap too. We ACTUALLY showed both the care manager and social servs lady the bathroom and they just said oh we will have a word with carers!! After they had gone, and I know this is not hygenic but me and my sister decided to leave the poo on the soap, and you could not miss it, and low and behold even though 4 carers have been since and put on notes they had checked the taps and sink etc the poo is all still there. I am just waiting now for a call back from social services. They have told us to back off and not visit mum as often and let them do it all, how the heck can we when they do this? I am livid. How can we leave mum safe and cared for when they cant leave her clean. Sorry about the rant but just cant believe it.
 

Owly

Registered User
Jun 6, 2011
538
Who is paying for her carers, mum or social services? Does she own her own house and would she be self-funding if she were in a care home? If so, you could research and move her to one without social services approval at all.

If not, it is rather more difficult as social services would be paying and that would be why they would dig in their heels until you "step back" and allow a hopefully small crisis to occur when they would have to act....not an easy step to take though.

It sounds, to me, way past time that she should be in full-time care whether she wants to or not.

Hopefully you already have access to her finances and Power of Attorney?

I don't think you need meds from the doctor (anti-depressants can have memory loss as a side-effect!), you need change.

You also said that you have plenty of me-time actually. You need to find a serious task, hobby or preoccupation that will fill your mind, so as to oust those persistent, on-a-loop thoughts of your mum all the time. You can only oust obsessive thoughts by another set of different and preferably happier, obsessive thoughts. :D

:)
 

janetlynn

Registered User
Jul 22, 2012
107
England
My heart goes out to you...

First of all you need a break right now.Ring social services and ask them for emergency respite for your Mum. From what you say, she may put up a fight but then she may not. You may find that she enjoys being in respite care. Either way, you cannot go on like this. It is making you ill. Please please ring today and explain that you need a break. If it`s only for a week it will give you time to get yourself feeling better and more able to cope. After the week is over you can reassess the situation. I strongly advise that you arrange for regular respite. ( we have 1 week respite every 6 weeks at the moment ). That way even when things get really difficult, you have the respite week to look forward to. I can undestand how you feel about the carers. They don`t really `care` do they? I had the same problems when mil lived on her own. Can I suggest that you email your social worker with your concerns. That way they have it in writing what is happening, and you should have their response in writing. Maybe they will take more notice and actually do something!!!!!!
Take care,

Janet.
 
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Wolfsgirl

Registered User
Oct 18, 2012
1,028
Nr Heathrow, Mum has AD & VD
Hi Poppit, this is appalling for you! I am so sorry to hear of your plight - know how you feel, my Mum went to CH 2 months ago tomorrow and is happy and settled as am I! I went from her being on my mind with worry 24/7 first waking thought (usually early hours) and last thought and only topic of conversation.

Once your Mum is in the right place, you will also begin to recover from the war zone you are in.

Just wanted to suggest that you take photos of the mess and include them with the e mail you send to the social worker.

Good luck, let us know how you get on and keep strong:D
 

narrowboat

Registered User
Apr 1, 2011
3
Middlewich, Cheshire
Carers?

Just read all the posts and know just how you must feel. It sounds as if your Social Services Dept leaves a lot to be desired and you have been very unlucky with the carers who are visiting your mum. If you can sort out immediate respite care you could use the time to organise a new care company to look after your mum, and increase the time that they spend at the house. 15 minute calls are pretty useless - all they have time to do is write in the book that they have visited! If mum is LA funded you can apply for Direct Payments from the Council that can be used to fund some extra, private care or cleaning or shopping, which might help you.

It sounds to me as though it's time for a care home for mum, for her safety and your health and peace of mind. Don't let guilt stop you organising this. I am at the same point; mum is in respite care for a couple of weeks and I am currently liaising with Social Services, GP, Memory Clinic to decide what to do next. We were fortunate with our carers, they were very good, but they can't be there 24 hours a day and that is now what my mum needs.

Don't be a martyr, and if necessary get the local Alzheimer's Society Support Worker to help you.

Judith
 

chrisuz

Registered User
May 29, 2012
94
East Yorkshire
I noticed that you live in East Yorkshire, so do I. I have found the local alzheimers soc to be really helpful and supportive. My local office in in Beverley you might try giving them a ring during office hours tomorrow.