At my wits end

Deam

Long time lurker here but totally at my wits end.

Some background. DH and I are in our middle 50s and we live with my 84 yr old mother in her ex council flat which we bought. We moved in 20 years ago at her request. We bought the flat and have paid all of the bills and maintenance since. The 3 of us always got on fantastic and had a great relationship.

Fast forward to the last 6 months or so. Mum has become increasingly frail unable to care for herself to the extent that DH ended up leaving his work to care for her full time as I earned the highest salary. He is great with her and has a ton of patience. Over the past 2 weeks things are going from bad to worse with her. I should add that she thinks she is able to look after herself, has no insight into her periodic forgetfulness and confusion and there is no obvious medical reason for it worsening. The doctor was up yesterday and said that she is ok and that the incontinence is just one of those things.

She does suffer from copd and she regularly becomes confused when brewing a chest infection but at the moment she doesnt have one. The past week has been horrendous. She has become completely incontinent of urine and even though I now have a commode which was delivered on Friday she will sit soaking in nappies. She wears kiddies pull ups now.

Medically I have been told that she doesnt have anything new, no infections etc. I managed to get social services and the district nurses involved this week and I am praying for some kind of respite care soon as I genuinely am at the end of my teather. This weekend I have done nothing but wash sheets, pjs and dressing gowns.

I am at the stage that I hate myself for getting on to her about using the toilet. She has never been incontinent before apart from the off little accident if she couldnt make it to the loo in time. I am in tears because I have been shouting at her. DH is starting to get annoyed because most of the time mentally she is ok.

She is on antidepressants for the last year as it was getting impossible to move her from the setee and all she did all day was lie on the settee and didnt want to move. We try and take her out every weekend even if its just for a drive. he makes her anything she wants and fancies to eat to try and get some nourishment into her.

I love her to bits and hate myself for being such a hellish daughter as I am not dealing with this at all and I dont know where to turn. We have just claimed carers allowance last week and hopefully this will be awarded as cash is a bit tight with one salary.

I dont even know why I am posting and I have all sorts of emotions like hating myself and wanting to just take care of her. I want my mum back..how pathetic does that sound. I hate when she cries and that makes me worse. I hate myself for thinking that I wish she was sway because tbh, she has no quality of like now and we now increasingly less and less.

I guess the flames can start now

Plans_all_plans

I don't think you will - or should - get flamed. It is long, hard work looking after an elderly relative and it is understandable that carers lose their patience from time to time.

I think you could do with some outside support. Contact Age UK to see if they can point you in the right direction. As well as this your local council may have a carers support group or offer respite care.

Best of luck, you are trying your best, just try to get some extra support.

LEJC

I have a similar problem with my aging mother...she is in early stage dementia...but it is made worse on occaisions with repeated urine infections and thrush....in the same way your mum becomes difficult when she has an impending chest infection....it may be worthwhile asking the doctor if he is able to test for a water infection...especially if its not normal for her to be incontinent...
Best of luck...lots of thoughts with you at this difficult time.

CH27

You & your husband are stars.

Caring for someone is one of the hardest, most frustrating jobs in the universe.

You need to scream & shout for help. Do not be fobbed off.

Practically get rubber sheets for her bed & for the chair & sofa.
Ask to be reffered to a Continence nurse by her GP.

Can you get carers to come in to give you & hubby a break?

PasturesNew

I'm with two of them.... they're both a bit ga-ga, but one of them's escalating and I don't know which one (e.g. ask them both which one left the front door wide open and they both deny it). Mine don't wee themselves, but there's a poo bag involved.... and so the bathroom stinks so bad I have to spray it 10 minutes before I go in there

I can move out though, it's their house.

It's what old people do. You don't see it on sit coms as the old people are part of the hilarity and even the old drunk s0d in Father Ted was seen as an amusing jolly figure in the corner....

One of mine's 'incurable' and they're both heading South fast. I'm not what I'd call their carer though. I let them bumble about on their own and I just run round and do stuff when they're asleep, or pretend I was going out anyway so can get stuff etc. For the Hospital visits I pretend I needed to pick something up from the town so can drop them off, then I might as well wait ....

lynzpower

http://www.carersuk.org/help-and-advice

http://www.nhs.uk/carersdirect/Pages/CarersDirectHome.aspx

http://www.carers.org/

its well known that caring is stressful and you and your OH need support to do it over the long term, even in the very short term it can be stressful!

No one should flame you for experiencing the stresses and strains of caring for a loved one x

Thinking of you x

getmore4less

It's going to hard, but rememebr you are there for her and are doing your best even though you feel you are not.

Many just dump their parents in homes or live too far a way and never visit.

The time you have now is a one off, there is no going back or repeat runs, OK everything won't go right all the time, BUT you are there, many others wouldn't be.

You really have to pester community and social they will try to do as little as possible when they know there is family that will do it.

We refused to do some things for my mum so they had to send some one in everyday.

Since you are stressed have a chat with hubby about maybe just you having a break, perhaps stay with friends for a couple of nights during the week so work stress can be reduced a bit.

We found the GP and local services a bit weak so for some things a hospital stay is the only way to get things done, so perhaps try to get her admitted next time she has an infection so it gets treated properly and they can assess the other potential medical issues and needs.


Also start looking around for places that can take her as a respite case, Better to have a few up your sleeve in case you need them they vary a lot in quality so getting some research done and knowing there is a good place you can use if needed can help.

In the end we did not need them, home to hospital to hospice at the end for my mum.

I want my mum back..how pathetic does that sound
Very normal,
That feeling stays with you for a very long time even after they have gone.

Deam

OMG, I am in tears again reading this. I genuinely expected to get flamed for being ungrateful and insensitive.

One of the things that I had thought was that she had a urine or chest infection but all have tested negative. I am trying to toilet her hourly at the moment to try and see what sre the times and how long it is taking between wetting,

I phoned social work on Friday for help so will see how that pans out, I have bene calling monthly for help for 4 months now but no one ever gets back to us. We have bought a propad matress, chair cushion, mobilator frame and a wheelchair to try and get things a bit easier for her but I am running out of spare cash tbh. I really would love if social services could at least provide some aid that way. She refuses to have carers in which is why we ended up with DH giving up work.

It is just so sad that a once caring, loving supporting and fabulous lady is reduced to this, and that is I think what makes it worse. She wouldnt ever get angry and frustrated with me

Thank you all so much for your kind words and support. I will try some of the links supplied and hopefully can get some similar aid for Scotland

sheilavw

I can empathise with you. My Mum is 84 and has dementia, she lives with my 44 year old brother who has downs syndrome. Until 2 weeks ago we had no help at all. My mums main problem is her 'wandering' she walks miles!. 2 weeks ago she fell and hurt her face, whilst in casualty age concern came, they came to her house for the next 5 days and made her breakfast, we then had to contact social services who were reluctant to continue this, but have since agreed. My mum eats if you make it, but wont think to make anything for herself. My brother goes 6 days a week at 12.10 when he finishes work and makes her lunch, my sister has gone part time at work so gets there at 1pm to do all household chores like washing,ironing. I work full time but go every evening to help with tea/washing up, twice on a saturday, 3 times on a sunday which includes taking them out for a bit in the afternoon, back to make tea, then taking them to bingo at 8pm. Its very tiring!

LEJC

Im now probably a little further down the line than you so can fully identify and understand the plethora of emotions you are going through....it is incredibly tough and there is a point where you and your husband need to step back and seek care for your mum...she will resent it at first ...and you too probably until a routine is established...but most of all you should not feel that in seeking care that either you or your husband are letting your mum down...

Please contact social services to get an initial assesment....they do tend to turn away a bit if they can see that you and your husband are caring for your mum...but realistically your health and relationship will suffer unless you insist on an assesment from them...your mum may even qualify for some funding to help with this

On the issue of finance do find out if your husband can claim carers allowance...or if your mother can claim attendance allowance...attendance is not means tested so all who qualify should get it...the payments will help considerably towards her care....there are also threshold savings that mean that some people need to pay for all care in the home via SS but it is still quite a high saving threshold you can achieve to claim partial funding to help with care...please check this out to see if your circumstances would mean your mum qualifies...

It is such a hard time for you all...I know exactly where you are ...and recognise my own flustrations that I had 18 months ago...

My mum now has care workers for 2 hours a day...and is partly funded by SS...it means my practical responsibility has reduced in as much as I dont need to be there to cook..wash...etc etc...but it does mean that my time spent with her can be a bit more quality time where we sit and have a cup f tea and a cake and try to enjoy eachothers company...something which before care workers established a routine was almost impossible...the time I spend with my mum now is the closest I can get to having my "normal " mum back....

Errata

Your district should have a continence service who will be able to advise. It may be not that the lady can't remember to go, or doesn't realise she needs to, it could be that urine is slowly leaking all the time and isn't noticed by anyone until there's a sufficient noticeable amount.