at the end of my rope

[Redwitch]

Hi Everyone,

Haven't been here for a while.

I have now been couselling for 4 weeks, it started out so well, and I had made a huge difference, the last 10 days bought the reality back. Went counselling last week and held it together after a very, very bad Thursday. Last week was dire, came home Tuesday from a note from the carer to say that Mum had lost it and started swearing and shouting at her and then started throwing things at her (luckily nothing that caused and damage), the same carer has been coming twice a week for months, although she has done this before, Mum has always saved this special treatment for the family.

My health has deteriorated over the past month, Dr thinks I have either an ulcer or a hiatus hernia, and I am still waiting for a camera down the throat to decide, need to have chest xray this week and blood tests to see if thyroid is adding to it . After another dreadful Thursday went to see my Counsellor on Friday and totally fell apart. She is worried for my mental state and fears a total breakdown. GP obviously has concerns, hubby and kids are here for support but know from the past I need to hit the bottom before they can help me. I have hit the bottom now big time.To scared to arrange respite as I don't know how she will react.

Took her out for lunch yesterday to avoid the rushes and save my blushes . It was like lunching with a stranger. Everyday I cry, everyday I hate myself a little bit more
I hate to her her voice, and I draed to think what she is gonna do next.

So many of you are going through much tougher times than I, yet I have to surrender. I CANNOT COPE.

Mum's CPN is due to come see her tomorrow, and I delivered letter today so she knows what has been happening. I have admitted defeat I can no longer cope. I don't sleep because of constant heartburn and a persistant cough (months now), I cry all the time, I "hate" what she has done to me and my family...

I hate myself for feeling like this. I am rubbish and I have failed. My counsellor asked on Friday why it mattered to me so much what Mum looks like. It is all I have left, abilities - GONE, conversation - GONE, personality - GONE, facial expressions - GONE, humour - GONE, compassion - GONE, ability to care - GONE, personal care - GONE, the least I can do is try and make her look like my Mum... So yes it does matter what she looks like.

She dresses like no one loves her, wear day clothes to bed and pyjama tops in the day. Today she put her clothes on backwards. I am not super woman, and I cannot do this anymore. I love my Mum to pieces, I just don't like her anymore

Jan

 

[Izzy]

Oh Jan Im so sorry that things are so bad for you. I haven't the experience to offer any help. I just wanted to say I'm thinking of you. Take care. xx

 

[jan.s]

Dear Jan
I am so sorry to hear that you have reached rock bottom. I too have been in that pit, but am now climbing towards the light. You can too. There is no way that you are admitting defeat by saying you can't cope - you are asking for help, and you have to accept that help, no matter how much you feel you shouldn't.

One thing you say, that is true, is you are not Superwoman. I know that truth hurts, but it is true!

You need to speak with the cpn and arrange for respite care, for your benefit. Mum may not like it, but that is not your problem -YOU need help. When I was struggling, my husband was taken in for assessment - the best thing that could have happened. I love him dearly, but now our relationship is so much better because I am not stressed.

Please, please ask for care for your mum. It will give you the chance to rebuild your strength. There is no shame in asking for help.

Please keep updating your progress.

Thinking of you
Jan x


PS So many of the scenarios you describe sound just like the ones I faced.

 

[Dottie]

Dear Jan,

My heart goes out to you. I am so sorry, this wretched illness causes so much distress, heartbreak & gut wrenching pain. You are not rubbish & you have not failed, you are just run into the ground by the effects of this awful disease.

Please, please take care of yourself. Lots of us here care about you very much. Wish I could do more than just words but am thinking of you & sending you much love,

from Dottie xxx

 

[LadyA]

Jan, you are not rubbish, and you have not failed! You have just gone as far as you can go - you have succeeded thus far, but this is far as your own health will allow you to take the strain! Think of it this way: If you had the strength of say, a horse, you could expect to pull a plough for x length of time. As a woman, you just might manage to move that plough, and pull it a foot or two. You won't be able to pull it the same distance as a horse, and you wouldn't expect to - you don't have that strength. With anything in life, including caring, different things affect our abilities to deal with it. My daughter works with a roomful of 2 year olds. I have no idea how she copes with it - as far as I am concerned, children are an alien species! I just don't know what to do with them. She has no clue how I cope with my husband's dementia. I don't have her abilities, she doesn't have mine.

Before about eighteen months ago, had William's dementia deteriorated to the place he's at now, I would have been unable to cope, because of my own health at that time. I suffered from very frequent, horrific migraine attacks, and was spending two or three days each week in bed, in the dark, vomiting regularly. I literally could not have been able to be up and around, dealing with him. That wouldn't have meant I would have failed - it would have been a matter of my own health not being up to dealing with someone with such enormous needs. And it sounds like your own health has taken a huge battering from dealing with your mum. I'm very lucky in that these days my health has improved enough that I don't have to take to bed with the migraine attacks, I just have to swallow lots of pain killers! You need to do whatever you need to to take care of your own health. You have done all you are able for the moment for your mum. It's time to "plug your charger in", and call a halt. You will be giving her the best possible care at this point, by letting someone else take care of her while you take care of yourself.

(scuse the rambling - I always ramble when I have a migraine!)

 

[SarahMM]

Hi Jan,

Seriously seriously time to start taking care of yourself. To me, it sounds like you have been and still ARE a good daughter, but I can hear the desperation in what you've typed.
No one, not even your beloved mum's illlness is worth risking your health or sanity over. Time to take a step back and let the "professionals" take over. I'm prepared that the day may come for me to do the same one day.
I'm new to this ****ty roller coaster, but I have already experienced the benefits of knowing that I'm not alone, and just typing stuff on here really really helps.

Hang on in there, and don't ever EVER be afraid or ashamed or unwilling to ask for help. You so deserve it.
XX

 

[CollegeGirl]

Redwitch, just wanted to reiterate everything that everyone else has said. You are obviously at the end of your tether and can't do any more. Please get the professionals to take over.

I want my dad to get the professionals to take over, but how bad do things have to get? I want him to get help BEFORE things get even worse. I'm sure your family feel the same about you. Do it for them. Don't feel bad. Don't hate yourself. You are just as important as your mum. In fact, you are MORE important than your mum, to your husband and children.

With much love xx

 

[Margaret W]

Hello Jan

I don't know you. I only come on here periodically.

I've read what I can of your posts, and I don't see anything at all that suggests you are rubbish, or that you have failed, or that you have any reason to hate yourself. If you really do feel like that for more than a few days (and we all have been there, for a few days), do seek help for yourself.

From what I have read, there is no reason to give yourself all those horrid labels. You are trying hard to look after your mum. Dont berate yourself, please. You are a good woman, doing her best.

Dealing with this illness is, scuse my language, BLOODY HARD. Lesser women would go wobbly at the knees and need smelling salts, and somebody else to take over. If you have anyone to take over, then get them on board pronto, but if not, then we are all your substitute helpers, ready to give help and advice where we can.

Seek out the help that has been suggested to you. I am not 100% convinced you will get it, but you can only do your best, and I am 100% convinced that people on here will support you as best they can.

Take a step backwards, and look to yourself now. I know you want your mum to be nicely dressed, but if it is too much for you, don't beat yourself up about it. Your mum doesn't seem too bothered, so give yourself a break for a while.

Much much love

Margaret

 

[Farmergirl]

Dear Jan

Im appalled that you feel so bad!
You might remember I was in the same state a few months back and feeling just like you are feeling now.
You have reached the bottom - the onlyway now is to pick yourself up from the floor and start taking each step upwards. Im so proud of you - no-one can know how **** it has been, and how much of a mental and physical strain you have been under being a truly heroic and responsible daughter.
Now is the time to MAKE the SS do what they do regards your mum. In the morning start the ball rolling. Contact them and arrange things - tell them that you are in crisis and are not responsible any longer. They have a duty of care to YOU as a carer - remember that. Get your GP on board - Im sure he has some clout and can back up how this is all affecting you.
Please, please do the right thing for yourself, and remember that we are all here to back you up and lift you from the floor. It does get better, I promise. Having made the decision to get mum into residential I feel like a different person. I know I did the right thing and when it broke me, I also made the right decision to put her somewhere she could get the care I couldnt give her.
Many, many hugs......

 

[hopetohelp]

Dear Jan
You are a saint . I am a little behind you with my dads progression and if it were not for my wife holding me together I would have lost it.
Your mum sounds like she was caring and compassionate I suspect she would not want you to be feeling like this. To be able to care for your mum you have to care for yourself first. You sound very low - please go and see your doctor. Im sorry if I get this wrong my wife does tell me I offer solutions when empathy is required but then she did mention recently that my ideas are generally good. I asked for it in writing but she was not going to go that far.
It does sound like you need help right now and some good respite - please get it. Are social services anywhere near helping you?
Thinking of you and your family

 

[Dazmum]

Agree 100% with Farmergirl and with what everyone else has said above. What seems to be holding you back is what your mum's reaction will be to respite. Jan, you must do this for you, whether it is temporary and ends up as permanent, the first step must be for a good length of respite, to help you right now. You, or your husband or GP can tell her it is to give you a break because you aren't well. Fact. Sounds easy for me to say, and I know full well it's not easy to do, but you need to take this step. Once done, you don't have to do it again and you can begin to recover. It's not a sign of failure on your part, I promise and it doesn't mean you love your mum any less. As Sylvia once said, it doesn't stop you being a carer. I too feel like a different person now, guilty sometimes, yes, but I feel so much better and can still look out for my mum, we have quality time together, and so can you. Our GP was brilliant in supporting us all, and once you use the words 'I'm in crisis' with SS, things happen. I know you were really put off by the CPN and SS before, but don't be this time. Take that step today Jan, please. We are all here for you xxx

 

[Witzend]

Ditto to what everyone else has said - you are doing your fantastic best, a lot more than many would do, and have absolutely no reason to feel bad about yourself. This disease can be so incredibly hard and stressful to cope with - how many of us ever realised just how hard until we had to do it? And that aspect is so little talked about - if dementia is ever shown on TV etc. it's usually in a relatively mild and 'easy' form so that the vast majority of people think that all it takes is a little kindness and patience and lots of cups of tea. IF ONLY.

As for dressing nicely, I can so well relate to this since even into her early 80s my mother was always smartly dressed and even at that age would turn her nose right up at what she considered frumpy 'old lady' clothes. Yet now I sometimes find her walking about the CH in her nightie - with trousers underneath and a jumper on top! Staff are always apologetic but she won't always let them help her and gets stroppy if they try. She doesn't care any more, and I have learned not to care too much either - there are worse things to fret about.
All the very best.

 

[Chemmy]

Your mum sounds like she was caring and compassionate I suspect she would not want you to be feeling like this.

This point made by hopetohelp is so true. You would not wish your children to be suffering as you are suffering now, if they were caring for you, would you? Your mother would, if she could, undoubtedly say the same.

I know you say it matters what she looks like - it matters to you, but I doubt it matters to your mum. Once you can accept she is what she is now, and let go of what she was, then you will start to find peace. I am about to visit my mum with photos of my daughter (her only granddaughter) getting married three weeks ago. I know my mum won't even register I'm showing her a photo, let alone the story and sentiment behind it. If I dwell on it, I find that upsetting so I don't - it's not my mum's fault she's ten years in to this awful disease but it's not my fault either. It is just the way it is. And I'll be damned if it's going to take me and my family down too.

 

[Canadian Joanne]

I can only agree with everyone else that you must look for at least respite. I personally suspect the time has come for something more permanent. You absolutely must take care of yourself first.

I know exactly how you feel, as it's how I felt about my mother back in the bad years. Please get the ball rolling as quickly as possible. You can no longer cope because your mother is particularly difficult, as was mine. My mother was sectioned three times, twice from the nursing home she was in. So it's not only family that can't cope, it can also be the professionals. Please stop beating yourself up - you're not being at all fair to yourself.

 

[Redwitch]

Thank You

Thanks everyone for your very wise advice, I am trying my hardest to address the situation.

Tried to talk to Mum today, but she doesn't understand why I feel so tired all the time. Moans about the weekend club (once a fortnight), so desperate for some time out, not sure how she will take it any advice guys

Wrote to CPN and hand posted letter on Sunday, she came to visit Mum yesterday and I have been expecting a phone call. But nothing

Just gone out to the kitchen and found Mum putting cat **** in the bin ... Yes I shouted at her . We have even put a label on the bin to tell her not to do it .

It is all the simple things that drive me mad, all the normal things I cannot cope with... Why can't we access training to help us when we are up against it, why does it always have to become a crisis

Sitting here now at the end of a bottle of wine, eating chocolate feeling rubbish... again


I will phone the CPN tomorrow, and try and move things forward.
Jan

 

[Farmergirl]

Sweetie
Mum probably dosnt even look at the labels on the bin!
When mum set fire to the kitchen when we were in bed she was poking a knife into the toaster to try and get the burning toast out! No amount of trying to get her to understand would have done it! Even with the smoke alarm going off she just didnt get it. She was (and is) beyond knowing.
Your mum is passing the stage of empathy.....you need to accept this, but you are too tired and too fraught.
Phone the CPN and your GP please. I promise you you will not regret it.

 

[jan.s]

It's all too much for you at the moment, you need a break to recharge your batteries. Phone the cpn in the morning, please, as Farmergirl says. It's so hard to even try to think straight once you get into this spiral of events. You need that break.

Love and hugs
Jan xx

 

[melz]

Being an only child, I have had to suggest respite to my mother. She is very manipulative and clever and knows all the tricks to make me feel guilty about leaving her there. HOWEVER, I am important too, and have INSISTED that she went, even though she firstly arranged her own holiday with an 83 year old blind friend who has steep stairs! (I can laugh about it now, but I was gutted at the time). So PUT YOURSELF FIRST. YOU ARE NOT A BAD DAUGHTER, JUST A TIRED ONE!

 

[2jays]

Jan my honey - we all talk about taking little steps, one step at a time, but I think the time has now come for you to forget the little steps and take a HUGE step....

Get mum into respite NOW! - shut your ears to her moaning, ignore her reasoning - leave it to OH to take her - whatever it takes to get her there - but do it

What the 'ell use are you going to be to her if you continue living this way?

A small bag of haribo and a ginormous bucket of hugs from me
Xx

 

[LadyA]

Jan my honey - we all talk about taking little steps, one step at a time, but I think the time has now come for you to forget the little steps and take a HUGE step....

Get mum into respite NOW! - shut your ears to her moaning, ignore her reasoning - leave it to OH to take her - whatever it takes to get her there - but do it

What the 'ell use are you going to be to her if you continue living this way?

A small bag of haribo and a ginormous bucket of hugs from me
Xx

A small bag? I've just polished off a large cup of Candy King pick 'n' mix sweeties from Tesco! Lots of jelly beans, jelly babies, fudge, etc. Do I feel guilty? Do I heck! Himself insisted we buy them yesterday when we were grocery shopping (this is why I normally grocery shop online! Couldn't this week because of a migraine) - he didn't actually want them, but couldnt' resist all the colours, and the idea of all those sweeties!