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Out of my depth with Mum - Carers UK Forum

Out of my depth with Mum

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Hi Liz
Have just joined Carers UK and the title 'Out of my depth' totally resonated with me. I am in a fairly similar situation to you and so rather than start a new thread, thought I'd write about it here, there are other Sandwiches out there!
Sadly my dad passed away several years ago and my lovely resilient mum simple got on with life, in the way that women tend to. We are extremely close and although we irritate and bicker with each other there is a deep love and understanding. So this is not so much about my mum but about myself and how to be a better carer as I am dreadful at times.
So, three years ago we adopted two adorable children who are now age 4 and 3. Complete handful! Two and a half years ago my mum had a stroke which has left her with severe spasticity and some cognitive issues (though socially she is fine and it is not dementia). She moved in with us two years ago and was wheelchair bound, using commodes etc. We have carers come in 2-4 times a day and I fill in. To my credit I went out and bought mum a quad stick and gave her the confidence (which hospital said she would never do) to get her walking again! So we lift her out of her chair and then guide her while she walks/shuffles very stiffly and slowly to bed or loo. She hasn't got the confidence to venture out without being in her wheelchair. But she has done really well.
Because we live in a bungalow and there were no spare bedrooms my partner and I slept on the sofa for 6mths while I paid for a loft conversion out of all my savings and it has left us broke. I'm freelance and work is hard to find, plus with the children and mum it is hard to find the time to do the work when I do get it and I am often up until 1am then up again at 7am for the children. I am also the main breadwinner (except not right now hence the struggles). So mum is pretty frail. The children do love her but also resent her a lot of the time because it takes about half an hour to take her to the loo and back when they want my attention, my little boy is quite boisterous and at times it can get a bit hairy! Plus she is not very child friendly, she never calls to them to come and give her a cuddle, she never asks them to play, I have to remind mum to chat to them. Partly it is her nature to not chat to children but also the stroke has slowed her thinking down. So she's often shouting 'no!' at them which only makes them (jump on the sofa) more! So really they tend to steer clear of her. Now I know that really it is not mum's fault but I feel really begrudging about this! I know I shouldn't, it's her way and the stroke but I think 'what I have done for you and you could make more effort with them!'. She's really very busy, she goes to three support groups a week, the gym, has friends visit, but all this has been organised and is kept going by me! So I am her full time PA sorting out her busy diary. I really want her to be busy and happy so this is important but she never seems happy. My partner helps but isn't keen on mum staying with us - I pushed it on him because I can't see mum going into a home or back to her own house - without being able to walk I'd worry she'd be so lonely. She does have a house which is rented out (all arranged and maintained by me) which pays for the carers. Forgot to mention mum is obsessed and only thinks about going to the loo, she is constantly worried about wetting herself or worse (she is partly bowel incontinent). So my nerves are frazzled. I have a little boy who I have to watch all the time, a 4yr old girl who is constantly sidelined, a mum who does have these (very nice) toddler moments herself, trying to earn a decent living and keep clients, deal with carers, keep my partner happy, plus school/learning! So, this is the bit I am ashamed of. Increasingly I have had these monster moments. I'll be settling the children in the bed ready for a night of work and at this moment mum will start calling me to take her to the loo. That sets me off, ranting to her about couldn't she hold on ten minutes and why didn't she go when the carer was here and how I wont be able to get enough work done now. So the children are up another hour, I start work late and it starts an evening of me being a ranting (and nasty) bitch! Or, I'll be working on a deadline and she'll want me to take her to bed and that starts me off again bringing up the past and other petty resentments. Or I'll be just off to pick the children up from school and she'll ask me again, setting me off again! All it takes is the slightest thing and I'll take out all my frustrations on her. if things don't go 100% smoothly everything is off schedule and I get anxious and angry. Poor mum. Now, I know I shouldn't but I do. I don't want her to move out I'd worry too much but I just wish life was easier! It is too much for me but I don't see any other way. Have looked into respite but that's another job.... and it's not as if she is too much trouble, it's my mood and tolerance that needs sorting. Can't take anti depressants as allergic. Just keep thinking how awful I am and how I hate myself but I cant see an answer but I really want to be nicer and her to enjoy living here.
Hasn't always been like this, for first 6-12mths I loved it, would take her to all the toddler groups, soft plays and parks - felt very proud to look after her - then got burnt out and thats when I started having the mood swings.
By the way I'm 44. Mum is 76.
Hello Louise

I have split your post from the topic you originally posted in (as I didn't want your post to get 'lost') and have given you a thread of your own.

Welcome to the forum I'm sure others will be along shortly to welcome you to our cyber 'family' :)
By the way we all know where you're coming from; you're not a 'bitch' or a bad person, just someone with far too much on her plate, far too much for one person to cope with.
Hi Louise and welcome to the forum.

I'm so sorry that your mum became ill so soon after you took on care of your little ones. No wonder you're frazzled. You're not a monster, you're an ordinary person dealing with extraordinary circumstances.

I'm a sort of Sandwich except my carees are much older than yours. I lose my rag all the time even though neither of them makes huge physical demands on me. It's just that there are times when I cannot face one more thing on top of what I already have to deal with.

One thing forumites point out is that our childrens' needs must take priority over our parents'. Your mum must understand this. Please, please let go of some of your responsibilities to her - can your partner help out? - and give yourself some 'me' time. If you break you won't be able to help anyone.
Hi Louise. ...

I know where you are coming from and please do NOT pull yourself down.... you absolutely love you mum and want the best for her, that's evident, you are only human and we can only do and take so much before we 'crack', what you are going through is normal, you have sooooo many plates spinning there .... Please don't look at yourself with negativity, you are most CERTAINLY NOT A ' BITCH' ........ For goodness sake !!!! You're beating yourself up and it's so unjust..... you need help obviously, could you get extra carers in ( 2, 3, 4 times a day ?)

Could your mum possibly wear a pad so IF she didn't quite make it quickly enough to the toilet it wasn't such a mortifying experience ......

You're an absolute angel for doing as you are doing with your lovely mum... she will be very proud of you and grateful. ... but sometimes 'Angels' do require a little bit of help X :-) :-) :-).:-)

Judi
I just want to send you a virtual hug! You are doing so well. I am also "sandwiched" with my 5 & 7 year old and my 76 year old Mum and 78 year old dad . It is so, so hard being pulled in two different directions. And I constantly feel like my needs come last on the list behind, kids, parents, cat, dog, husband and the goldfish!

I don't have half the worries you do as I don't work, don't have parents living with me and my kids are older and at school and I know through friends that however much joy adoption brings, it also has its own stresses and is bloomin' hard. You must also feel hard done by that you can't fully enjoy your much wanted and loved children, because I know I do when Mum and Dad impinge on precious family time. I lose my temper with all concerned at times, because it is all so very stressful. You are doing an amazing job. PLEASE don't beat yourself up. You are just being human.

This forum has helped me so much to come to terms with my roll as a "carer". After 5 years of struggling on with Mum and Dad with very little help, I am determined that this HAS to change. It is not what they "want" that counts, but what they need and whatever it takes for everyone not being run into the ground in the process. If it helps, get more help in so you can enjoy your Mum AND your children. Do less of the drudge and try and claw back some more "nice" times with your Mum if you can.

I also totally relate to feeling resentful. In my more bitter moments I manage to dredge up every feeling of being hard done by accumulated for the past 41 years! And this is not my personality at all! Not good, and at some point I will seek some therapy to deal with this!

Please cut yourself some slack. You are doing amazing things for your Mum. xxx
Thank you Suzie, Starfish, Judi and Sally for your kind replies. It is (good) to know there are other people out there who understand the carer role. The reality isn't quite like the pictures you see on nursing home website with a smiling caree and carer is it? I think being a carer is one of the hardest jobs going and carers that do it as a job deserve so much more recognition.

For now I will carry on but need to have a good think about how to avoid the super stressful moments or at least lessen their affect on my mood. Mum showed me this leaflet about disabled holidays and it looked great, so if she is brave enough perhaps she would go on one of those and it would help us both.

It's like having your mother, who you love, come to stay, but who never offers to help out (clearly she can't) but helpfully points things out all the time (those flowers are past their best, what's that on the carpet? what's he/she up to now? etc) - and never goes home! But you know she doesn't want to be a burden.

Sally, we have lots in common. How do you manage those angsty moments?
Mum does wear pads but it doesn't stop her worrying and thinking about it ALL the time. Sometimes I wonder if it's her defence mechanism so that she doesn't have to a) think about the sad stuff and b) she actually can't concentrate on normal conversations anymore as they are too complex resulting from the effects of the stroke.

We do have carers come in 2-4 times a day Mon-Fri, most importantly to get her up and washed, I couldn't do that with the children about. Then the other times to take loo/walk/get her in wheelchair. So I do the cooking, washing, extra loo visits and bedtimes. So think it's mainly about needing space.

Again, thank you so much, Louise ;)
Louise, I DON'T manage those stressful moments! I lose my temper (either with my Mum or the kids) and then feel rubbish. I have had my Mum with dementia staying with me for the past 3 weeks, and I am a wreck! You are doing an amazing thing having your Mum full time! I do plan to see the GP to seek some therapy to deal with things better.

I think a break is a great idea. If your Mum didn't feel up to a disabled holiday, how about some respite in a local care home? If you do your research I am sure you could find a nice one with lots of activities for her.

My other thought was perhaps some day care for your Mum? If she is sociable she would probably really enjoy it. And it would give you a full day to get on with work?

Could you rethink how you get your care? Perhaps get the get a carer in for longer of an evening? So that you have someone covering you at that awful flash point of kids' bedtime. ANYONE with small children will tell you that this is a difficult time in any household! Perhaps getting someone a bit longer so that they can be on hand for your Mum, so you can concentrate fully on the children?

Are you getting all the benefits you should? Does your Mum get attendance allowance. You might also be able to get Carers allowance? This might give you a bit more money to get a cleaner to take some of the pressure off?

Finally do you ever get any time just for you and your partner? I am guessing this is really hard. But if you could find someone to sit with your Mum and the kids for a few hours it might help? Sometimes just a little "me" time goes a long way!

Really good luck with feeling better about things. You mustn't beat yourself up.
Louise, I'm going to be really blunt. You are in one of the worst situations I've read about.
Your mum is using you, totally. I'm sure you've worked out by now that moving her in with you was the worst mistake ever. If she cared for your wellbeing at all she would never have moved in either if it meant you and your husband sleeping on the settee for six months. Totally, totally unacceptable.
Then you used all YOUR money so that you could have a bedroom back, whilst she was in yours?! What about her money, the value of her house that she can't live in?! You are now broke and she's still in your house as well as owning another one.
You are bringing up two children and trying to work at the same time. that in itself is a huge challenge, especially with under 5's. Saddest of all, you have lost all those special times with your little ones, any minute now they will be at school and you will never get those years back again.
Residential care costs at least £700 a week, is mum contributing anything like this to the household. Because you are, in effect, a residential care home for one.
The current situation is simply NEVER going to work. I feel really sorry for all of you, mum seems to completely rule the roost in your place. How much longer before your husband has had enough and walks out? Your mum is going to get worse and worse, mentally and physically, until she dies. That is the sad truth.

Accept that it isn't working, it will never work, sit down with your husband and start planning for the future.
As for being mum's PA arranging her life etc. because she might get lonely!!! You are not her slave, what about your own life, your children's, your husband's? It's only a matter of time before you get really ill, so act now, don't delay.

Inevitably, money will be a major deciding factor. Does mum have over £23,000 in savings? (This is the figure at which Social Services expect someone to be "self funding".)
Why are you keeping mum's house if she can't live there any more? This is just an extra burden for you.
Ask your husband what he would like most of all, and go from there.

If mum paid you the going rate for her care, you wouldn't have to work so much.
Would it be better if she sold her own house and lived in a specially adapted bungalow?
Could you pool resources and buy a larger place for all of you, with mum having a proper granny annexe? (not an idea I'm in favour of as you would still be at her beck and call).

Just give up all idea of mum remaining with you, for the sake of the children most of all.
You're trying to hold up a situation that is just impossible! Something has to give, and right now it's you.

I'm worried that you say the problem is you! that you have to cope better etc etc etc.

No, the problem is your mum. I know she has real physical problems, but the fact that you say that she takes our her petty resentments on you etc etc, and is not loving towards your children (remember, she probably - in a way very understandably! - does NOT see them as her grandchildren - to her they aren't!)(because they aren't!), is the worst aspect of it all.

How long do you think the current situation will last? I mean, to be blunt, how long till your mum dies? Because that really, isn't it, is what you are 'assuming' - that your mum will live with you, like this, till she dies. Dies when? Ten years, twenty years? It could be you know!

Your children will have grown up and left home - and I suspect your husband will be long gone as well.

I know it's hard, but when you take on children for any reason THEY have to take priority - and this is something your mum has to accept (however much she may emotionally 'reject' or 'ignore' them).

I think residential care is by far the better option - AFTER she has repaid you ALL the money you spent on creating her accommodation (this must be paid for out of the sale of her own house).

Sit down with your husband, and have an honest talk about the present AND, far more importantly, the future. Because 'staggering on' the way you are desperately trying to do now, is just not sustainable.

(PS - many us of have found that once the elderly parent is in residential care/supported living, our relationship improves because then the time we spend with them is quality time, not 'drudge' time!)