I'm not a natural at this caring lark

ceroc46

Registered User
Jan 28, 2012
118
0
Evening all,

Ramble alert

Recently I've been feeling really guilty at how I'm feeling with this situation. It doesn't appear to come naturally to me. I wouldn't have dreamt I would say this , this time 2 years ago; we were so close.

My youngest son had a school footy match today after school, but I couldn't go because I had to be here to see mum off the bus ( day centre today), can't go later because she 'sun downs'. Daughter wants me to visit her at uni; she's having a bit of a rough time. If I go I'll have to be back for mum. Everything revolves round her now.

She had poo all over her hands the other day, but I couldn't get her to wash her hands. She struggles to go to the loo during the day, but manages to get 2 pads off at 4am and wee all over the carpet.
As I've said before it could be a lot worse, but I'm becoming very resentful . I know it's the dementia, not her, but that doesn't make it any easier when they want help with their homework, and you 'have to sort granny out first'

I keep giving myself goals as it were, Easter, summer, Christmas, and then I'll see how things are, but I just keep putting it off.

Everyone else seems to take it in their stride, why am I struggling?

Thanks for reading x
 

1954

Registered User
Jan 3, 2013
3,835
0
Sidcup
We are all struggling you are not alone. BUT we all struggle at different times thankfully, which is why this forum is so fantastic!

It must be hard for you. Do you get any help at all?

Sending you lots of love
 

Jessbow

Registered User
Mar 1, 2013
5,678
0
Midlands
You are not alone, we all struggle at times

We'll pick ourselves up, dust ourselves down and start again..... having scoffed some chocolate, glugged some wine, justified a cream cake and had a jolly good Howl
 

Noorza

Registered User
Jun 8, 2012
6,541
0
Ceroc we are all struggling in our own ways. I was terrified this morning, mum went missing. She'd gone to town but no one knew as she'd told no one. Then had phone call after phone call as family wanted me to find her as am on the doorstep.

I was like a little duck, floating nicely on the surface and paddling like a mad woman underneath. Some days I paddle other days I flap. It's all OK we're there and we're helping. Sometimes I don't like her, sometimes my heart goes out to her, other times I know the angry gremlin isn't her it's dementia, other times I can't do that.

There are no lessons to prepare us, we just do.
 

Lowlander

Registered User
Jun 3, 2013
113
0
Scotland
Evening all,

Ramble alert


My youngest son had a school footy match today after school, but I couldn't go because I had to be here to see mum off the bus ( day centre today), can't go later because she 'sun downs'. Daughter wants me to visit her at uni; she's having a bit of a rough time. If I go I'll have to be back for mum. Everything revolves round her

Thanks for reading x

I brought up my son alone and worked full time. I always put my (NHS) job first which meant he was alone a lot from 8 years old. One time he was ill and I still didn't leave my patient to go to him.
There are hard choices but if I had the chance again, I would put my child first.
 

artyfarty

Registered User
Oct 30, 2009
267
0
London
Everyone else seems to take it in their stride, why am I struggling?

So feel the same. My mum is only at the mid stages and I already feel like I don't want to carry on. I think we all struggle at some point though - and deal with different things in different ways. I can be very up and down in how I deal with my mum as well - some days I can take the endless repeated questions in my stride and other days I want to literally tear my own ears off rather than hear it AGAIN.

You have so much to deal with - is it time to look for some additional help?
 

Hengell

Registered User
Jun 2, 2013
129
0
We are all only human and some days we can deal with things better than other days,this dreadfull disease test us all to the limits at differing times. I.e this morning all of us ready to go to school and work then all of a sudden mum has an accident as i was in the bathroom clening my teeth lol, so ended up stripping her showering her whilst my poor 11 year old was trying go help mopping the floor. Slight delay for us all but at the time was a catastrophe, by the time i got home mum could not even remember the instance and fair play to my daughter she was not to traumatised just hope no major incidents tomoz Am learning to take one day at a time and every day is different and patience well depends on how i feel soz im a mere mortal
 

zeeeb

Registered User
Indeed, you are not alone. We all go crazy with what we have to deal with, some more than others.

Some people run, some people stay and fight, some people fight too long, some run too soon.

You can only do what you can do. There is no shame in saying enough is enough. You need to put yourself and your family on that list as a priority as well.

When it is too much, it's ok to say so. It's ok to seek out a team of carers to do the mammoth task that you usually taken on by yourself.
 

Katrine

Registered User
Jan 20, 2011
2,837
0
England
When I joined TP I was able to read so many stories of how people were coping (or not) with the effects of this disease on their families. I shared stories and thoughts from TP with my immediate family. It helped us all to decide what were, for us, the limits beyond which we would not go. After a while you get a good feel for the patterns of progression, both physical and behavioural. This also helped us to recognise changes that were happening, and to anticipate what might be the next stage. Then we could plan the next steps.

We knew that the time would come for MIL to move to a secure residential environment, but it is so hard to know when that time has finally arrived, or whether you can go on for a bit longer. She was living on her own with visiting support from family. Her short-term memory was extremely poor but she managed reasonably well in a familiar environment, living a life of routine. This was unravelling fast since New Year 2013 but when we got the SW in he said we were all managing fine and we would have to wait for a crisis to occur before they could offer help. Not long after this the crisis did occur and MIL went to hospital with a severe infection and transferred from there straight to a CH.

Since May this year, all those who have looked after MIL, and also those who have done assessments, are amazed that she could have still been living on her own. She is extremely confused and cannot even manage personal care without support. We see that she is definitely worse than she was 6 months ago, but actually she was pretty bad when she was at home, but just pottered around going through the motions of daily life.

When you consider the very basics of what someone needs to do, it is possible to 'cope' on your own provided that people come in regularly to keep things on track. She was able to use the toilet, strip wash at the basin with flannels, dress and undress herself, get food out of the fridge, prepare very basic hot and cold food, make hot drinks using a kettle, put her rubbish in the wheelie bin, open her door using a key, walk to the corner shop to buy food, answer the telephone.

Beyond that she didn't manage anything in her house any more. Laundry, cleaning, repairs, gardening, the weekly shop, medical appointments, correspondence and finances; all those things were managed for her by us. I had to go round every day with her medication and sit there watching her take it, guiding her not to put pills in her pockets or 'save them for later'. :rolleyes: When things went wrong she was unable to fix them or even to understand that it was usually something she had done - trip the electrics, remove batteries, unplug things, turn off the heating, open the washing machine door mid-cycle, etc. This was frustrating for us but with daily visits we were just about coping with helping her to cope. She wasn't completely safe, but she wasn't completely unsafe either.

For us, the things we agreed would be the triggers to residential care were as follows, and not in any particular order, i.e. any of these by itself might be sufficient:

a) incontinence (beyond a very minor level)
b) malnutrition
c) falls and injuries on a weekly basis
d) wandering, especially at night
e) regular involvement with the police
f) aggressive behaviour towards us or other people

We decided that when MIL was no longer safe to be left alone we would not have a rota of family members living in her house, much to the disapproval of a close family friend whose family did just that when her father was dying. Spending 6 months living-in at the very end of a life where the person is not demented and can be nursed and supported safely at home is very different to taking on the 24/7 care of someone who is fit as a flea, resentful of people in her territory and would probably outlive us all in that hyper-stressful scenario!

I am also not a natural at this caring lark. By circumstance I have taken on a caring role for my MIL and my mum. I am pleased that I am able to do so much for them but I also feel that my own life is on hold, as I gallop towards the big 6-O in 2 years time. I drew a big line in the sand with OH earlier this year in relation to how much more I would do for his mum and for how long. At the time he was upset and angry because he thought I was letting him down, but I think it is important to be able to set personal limits and boundaries for the benefit of our own psychological well-being.

I remember shouting "How long is this going to go on!" and OH saying he didn't know but we'd just have to manage, to which I responded that in his working life he didn't manage without plans, strategies and review processes so I didn't see why we had to operate that way at home. He thought about it and eventually agreed with me, so that when the crisis came he'd already come to terms with the need to hand over the practical caring to the professionals.
 
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Anongirl

Registered User
Aug 8, 2012
2,667
0
Katrine, what an insightful response. My mum is at the level you describe your MIL. She lives by routine. Basic day to day living. I keep her decisions to a minimum, do her food shopping, prompt her where she should be and when, she leaves all post to me, I make all arrangements. With help of a morning carer and evening carer she gets her meals prepared and tablets given. Any change can cause anxiety. She seems to have settled into this. I do wonder how long someone can carry on like this and that remains to be seen. I hold my breath every day.

Ceroc46, I have two young children and I know exactly what you mean about guilt. I often think about what I will regret more, missing time with my children or looking after mum/keeping her company. It's an awful choice. Do you get help of any sort so you can divide your time? I think you need it if not. You will feel resentment because you need to live your life, spend time with your family.

I really hope you can find a compromise. It made me so sad hearing how you are missing out on time with your children X
 

shark2

Registered User
Aug 22, 2012
136
0
n ireland
Ceroc46 I know exactly how you feel.For me looking after my mum is becoming a chore..I don't want to do it anymore. Im fed up trying to keep her happy, spend time with hubby, my kids, friends and work. It is all impossible. My younger son really needs my help with homework etc, and there are times I know I neglect him because of my mother :( It is really really difficult , and then you get the visits from the guilt monster....:mad:
 

ancient&modern

Registered User
Oct 19, 2013
11
0
Ceroc46 I know exactly how you feel.For me looking after my mum is becoming a chore..I don't want to do it anymore. Im fed up trying to keep her happy, spend time with hubby, my kids, friends and work. It is all impossible. My younger son really needs my help with homework etc, and there are times I know I neglect him because of my mother :( It is really really difficult , and then you get the visits from the guilt monster....:mad:

hello ceroc46,
i'm concerned about your daughter. being away at college can be very stressful, and for girls especially, has added risks/ issues to deal with.

it's a good sign that she's asked for your help. but I well understand the being pulled in different directions. could you pay for coach fare for your daughter to come visit you for a weekend or a bit longer, by agreement with her tutor, for necessary support to be able to continue her course.

could your mother go for respite care or have carers coming in to feed, put her to bed.
guess you don't live with her.
your children have their lives before them and need your support. I know it's difficult, but they have needs too, which must be factored into how much you can do for mother, and when.
good luck
 

bonniedog

Registered User
Oct 17, 2013
13
0
You are not alone, I too am struggling day in day out. I don't seem to have patience with my mother some days. I try to spend time with my daughter but you can guarantee the minute my backs turned mother will decide to do a poo and put it in the washing machine or a drawer in the bedroom then it's a major operation to clean everywhere up. I don't know how we endure it but I suppose god forbid one day our children will be doing this for us? Although my daughter has assured me she will definitely not be cleaning my bum!