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Elderly parents

I need some perspective

62 replies

IthinkIsawahairbrushbackthere · 24/01/2020 16:10

I am carer for my disabled, widowed mum. She lives in a self contained annex in our garden. Our house is designed with all the living areas upstairs and there are steps to all the entrances.

Mum has little to no mobility and is in a wheelchair so is unable to come into our house at all. I have done all her meals and cleaning for years, since before my dad died.

Mum's condition has deteriorated over the past few years and in the summer she was taken ill with a perforated ulcer and sepsis. After nearly a month in hospital she came home with a reablement package. She hated having the carers coming in - she would never know when they would come in the morning so she started getting up ridiculously early so they had nothing to do and they would come in the early evening - sometimes as early as 6.00 p.m. to put her to bed so she started getting ready for bed at 4.00 p.m..

She was most relieved when the care package came to an end and she was left with me. Since then her mobility has deteriorated so she can no longer walk from her bedroom to the living room or from the living room to her bathroom so I have to take her every time.

My normal day looks like this:

7.00 a.m. - Get up with my daughter for school
9.00 a.m. - Go to mum, give her breakfast, sort her tablets, clean the kitchen and living room.
Sometime in the next couple of hours she will phone and say that she is ready to get up. Sometimes she will be dressed, sometimes I need to dress her and then take her from the bedroom to the living room.
1.00 p.m. - Go out to her and make her lunch/sort medication.
3.00 p.m. - She will phone and ask me to take her to the toilet.
5.00 p.m. - Another toilet trip, turn on the lights (she can't walk to the light switch)
7.00 p.m. - Take her dinner out. Then she will want me to stay with her until bed time.
10.00 p.m. - Take her to bed and help her undress etc.
11.30 p.m. - Husband comes home from work and I do his supper
12.30 a.m. - Bed

And at least another three visits through the day because she can't find her glasses/the tv "won't work"/ the mail has arrived/ she would like a drink "but don't rush - I can wait"!

After six months of chasing we have finally had a care assessment from Social Services and they feel she should have carers coming in twice a day. And she is furious! She has said she will NOT be having carers. Everything is fine. She doesn't need any help. But I DO!

I am up and down stairs to her at least ten times a day. She never wants to be alone but I have a husband and family and home of my own. My husband works various shifts so if he is on an early I really want to spend time with him. But I also have a teenage daughter who needs me. She can't bring her school work out to my mum's - mum has the tv on loud and will keep talking to her over the top of it! I don't want her to be left all on her own every evening. She already spends most of Saturday on her own because I promised mum I would spend Saturdays with her at a time when she was very depressed after dad died. I know there is nothing anyone can do to help with the loneliness - she has become totally dependent on me and I have to deal with that - but I feel that if I had a little less responsibility I could cope better with all that.

Am I being unfair to insist she has these carers? I am at breaking point trying to balance her needs with the needs of my husband/daughter/my own needs. The Social Worker says that she can not see me coping much longer without a breakdown and if we don't have carers mum will end up in a home. I don't mind doing the washing/cleaning/meals and could easily spend an hour with her in the evenings but not three/four hours every single night and all the visits during the day.

Oh and I have tried spending the afternoons with her but she still expects me to eat with her in the evenings and complains if I go home early, even if she has someone else with her.

OP posts:
MereDintofPandiculation · 25/01/2020 21:39

I never understand old people dictating what is going to happen to them Really? Don't you dictate what happens to you? Or do you let other people tell you how to run your life?

Agreed it's a different issue if someone is demanding that someone else should look after them. OP's mum doesn't have the right to demand OP does the caring. OP clearly loves her mother, but her load currently is unsustainable, and risks damaging the relationship between them. OP's mum doesn't realise it, but it's actually in her interests to allow someone else to do the mundane care, in order for her to be able to regain quality time with her daughter.

Too many people are living far too long and I say that as a nurse of thirty years. Yes, but they won't let us do anything else. Until we have legalised assisted suicide, and for dementia, not just "terminal illness with less than 6 months to live", a lot of us are going to be kept alive against our will and at our own expense. (And a lot of others will be kept alive fully in accordance with their wishes - not everyone comes to the same conclusion as to the balance between quality and quantity of life).

cptartapp · 25/01/2020 19:36

Your DM wants don't trump yours, and without being unkind, she's had the best of her life. Now it's your time. Too many people are living far too long and I say that as a nurse of thirty years.
A DF of mine built an annex for her parents too, this has backfired massively as now nudging 90, they stumble on and on to the detriment of everyone else.
I often wonder what kind of upbringing people have had to be made to feel guilty not to want to care 24/7 for an ageing parent. And what kind of parent allows it. You have a choice. Time to get tough.

IthinkIsawahairbrushbackthere · 25/01/2020 19:12

@AutumnRose1 you have made me smile!

I was so nervous about posting here because I am sure there are a lot of carers who what I do or worse but don't get paid anything or receive any gratitude. I was fully expecting to be told that I was selfish and that to care for my mum was privilege etc. But you lovely lot have made me feel a lot better - even though the situation is still exactly the same to be told I am not a bad person for the way I feel is very freeing.

Today has been good - my daughters went out together first thing this morning and won't be home till bed time so no guilt there and I walked out of mum's at 6 p.m. as my husband was coming in from work. We are planning on a glass of wine and some silly tv. I don't actually mind going out and putting her to bed as long as that is all I have to do. And especially as I have at least 4 hours of uninterrupted time in my own house!

And I offered to take her into town for a walk but it was too cold!

OP posts:
AutumnRose1 · 25/01/2020 12:58

I hate to sound like I’m hoiking my bosom, but ringing because the post has arrived or asking you to get her glasses, is appalling

thickwoollytights · 25/01/2020 12:43

If we stay home she will be ringing to say the mail has come or she's dropped her glasses etc etc.

I thought it might be something like this

Then you temporarily block her number or take the batteries out of the intercom.

Your time is your time

Martyring yourself will help no one

Parsley65 · 25/01/2020 11:09

My sympathies OP, you are having a hard time.

My suggestion is that you book a holiday and explain to your Mum that a) you need a break and b) you need to get some carers on board now so she can get used to them.

She won't like it, but keep repeating you need some time with your family and if she refuses to accept carers your only other option will be for her also to have a 'holiday' in a care home.

Stick to your guns and good luck Thanks

user764329056 · 25/01/2020 10:57

Poor you OP, I moved into my dad’s house to look after him when he was too vulnerable to be alone due to dementia, it was the hardest thing I’ve ever done and I nearly lost my mind, completely understand what you are feeling and hope you can make some changes

JKScot4 · 25/01/2020 10:53

@Ithink
To be blunt, your DM is incredibly selfish and manipulative and you are far too nice and kind, it’s time for an honest chat with her.
I volunteer with elderly persons and I’d be rich if I had a £1 for each one that says I don’t need/want carers, whilst their daughter breaks herself caring for them!
Tell her that she is monopolising you’re whole life and your family needs you too, even write down the timetable you did here and ask her ‘when do I get a break? when donI see my family?’ people in her position do become entirely self centred, she clearly has capacity and a lot of what you say is her guilting you, be tough and tell her it’s carers or care homes.
Can she not walk with a walker? short distances? or is it easier to summon you?

AnnaMagnani · 25/01/2020 10:52

When she rings you, what do you do? If the mail has arrived 'I'll pick it up when I get in'. Dropped glasses - Can she have them on a string round her neck to stop her dropping them?

Otherwise even if you do have carers, she'll still get you going round there every 5 minutes.

I'm also in the business and hear a lot of 'my wife/daughter will do it' while in the corner the wife/daughter is trying not to cry. I tend to be very blunt that this is now more than a one person job, carers get breaks and holidays and to go home at night for unbroken sleep, and their wife/daughter is getting nothing, the wife/daughter generally also has other responsibilities or health problems of their own.

Yes, they may be upset but the carer has been upset for months usually and the patient often hadn't really given that any consideration at all.

It happens to us all, one day we will all need a carer, it is the circle of life. It's hard for your mum but it is the way of the world.

IthinkIsawahairbrushbackthere · 25/01/2020 10:40

@thickwoollytights You ask why we sit in the car when I have free time - it started off as going out for lunch or a picnic but at this time of year picnics are off because of the weather so we drive somewhere scenic and eat and read. If we stay home she will be ringing to say the mail has come or she's dropped her glasses etc etc.

Someone mentioned a dog? She has her own dog - sort of! He was with her until she went into hospital although I was the one feeding him, taking him out etc then he moved in with us. There is no way she can cope with him now - he is very barky when he is with her but very relaxed and quiet with us. Also he is used to sleeping on her bed there is no way he will fit on her new single one.

He goes out to her for a couple of hours most days but he is too much for her on her own.

OP posts:
WillLokireturn · 25/01/2020 07:34

Sorry, I didn't finish a sentence. ... that's if her weekly client contribution is less than a weekly direct payment from LA would be.

WillLokireturn · 25/01/2020 07:30

I'm really sorry to read how trapped and exhausted you feel. You could also Ask the social worker to arrange a carers assessment for you. Thats your time to talk and explore how it is impacting in your life and others in your family. You can also arrange a Young Carers assessment for your DD who is helping, if you wish.

You sound a wonderful caring daughter and a lovely family. This is a situation that is played out across the country, that a person needs care help and refuses it, expecting relative to fill the gaps and continue where they are struggling.

It's very hard and the social worker cannot force your DM to have external care support. It has to come from family member taking a deep breath and saying to Cared for Person "No, this is what I can do, my DC also need me and I'm exhausted by x y z care tasks" It's about your mum hearing you, the SW sounds like a/he is already trying to help you with FOG issues and saying what feels unsayable to your DM. The good news is that You don't get one shot at this, you can go back to adult services anytime as a carer to say, I can't do this part anymore.

If it helps, re enablement carers don't give times as it's high volume constant new clients discharged from acute hospitals that they have to fit in at short notice. Ongoing carers wouldn't be like that, the care agency can usually give better more reliable times & regular carers that she gets to know, once care is bedded in. Your DM could also talk to SW about having Direct Payments (if financially entitled) so that you can recruit personal assistants and be in control. I'm sure the SW will explore that with you and DM.

That's if she's entitled to LA care, and her client contribution (everyone pays towards their social care), as you mentioned owing her money. That might be an asset taking her over savings threshold to make her full cost/ self funding, depends on a number of factors including whether it is tied up in her home or not. They'll do a financial assessment and let you know as these things can be complicated. If she is self funding, you /she can arrange private care help and use AA, her income and savings to do that. She can't take savings with her when it's her time, so using it to secure her support and comfort now, and your current time with growing family, is a good use of it.

thickwoollytights · 25/01/2020 06:42

Why do you need to go and sit in the car and read when you have free time?

fjreflycaramel · 25/01/2020 06:36

What others have said, it's either the carers or a care home if that can be afforded. You matter too.

oohnicevase · 25/01/2020 06:33

You are a lovely daughter but you have to draw a line , she is manipulating you and controlling you with guilt . You only have one life and she could live another 10 years or more and yours woudo have passed you by . I have always said I wil manage my mums care but I won't do it . It's not a life is it !

Summery1 · 25/01/2020 00:06

'I'd love to be able to ...' - oh, I recognise this guilt provoking stuff.
I'd answer something like 'You did mum. 30 years ago. And 10 years ago. I need to go home now.'

PermanentTemporary · 25/01/2020 00:04

Ah you're lovely daughter.... and if someone's with your mum and knows her GP's number, turn all the phones off (forgave a ringtone you don't answer...)

IthinkIsawahairbrushbackthere · 24/01/2020 23:58

I did say yes to a friend who comes every Thursday afternoon and the minute she walks in the door mum is on the phone to say that she is there and would love to see me! All the while friend is cringing knowing that she has come to free up some time for me, not to expect me to drop everything to see her!

I have a couple of really supportive friends who call to see her from time to time and we have an arrangement that if they want to see me they contact me before coming and usually we go out for coffee but if they just turn up they come to see mum. But she still wants me to come out when they arrive.

She wouldn't be able to manage to put food in the microwave. Even though she has a zimmer frame she just can't move from the chair to the kitchen anymore.

I am moaning here but I do need to make it clear that I love her to bits and thought my world would stop when the doc said she probably wouldn't survive surgery last summer!

OP posts:
PermanentTemporary · 24/01/2020 23:51

I really feel for you. I hope you can carve out more time.

The only way for strangers to stop being strangers is to see them regularly. Please start saying 'yes' to people who will sit with her for a while - explain its tricky and give them a few ideas then leave them to it. The carer input you are talking about sounds absolutely minimal, hardly anything in the context of what you are doing.

I believe all pharmacies are starting to push back against providing dosette boxes as they are hugely time consuming and high risk for mistakes. Which shows what you are doing for her....

Outsource what you can. Consider a cleaner for her (more informal help and company) and perhaps your house too. Try Wiltshire Farm Foods ready meals - could she prepare them herself if she likes them? Does anyone local have s dog they would visit with? So much fun, so distracting.

IthinkIsawahairbrushbackthere · 24/01/2020 23:51

I say "car park" - really we drive somewhere where there is a good view - not like a multi storey :-) But if we plan to do it we do it whatever the weather so we may drive to our favourite beach and park so we can see the sea and have a picnic in the car. Sometimes I meet my husband from work (I try and get there early so I can have half an hour with a book before he finishes) and then we will have lunch in the car together before he drops he home at the end of his lunch break.

This afternoon I left the house at 4.30 as daughter had a lesson with her maths tutor. She finished as my husband finished work so we picked up a takeaway on the way home. We all had tea with mum and then my husband went home while we watched Eastenders. I was still getting mum to bed at 10.30! I was a bit grumpy and said "I just want to go home - I have been out since 4.30!" and her comment was "I wish I could do that. I would love to be able to go out whenever I want!"

Every. Single. Saturday. I suggest we go out but she is usually in too much pain or it's too cold. Or it might rain!

OP posts:
Summery1 · 24/01/2020 23:40

I think it's a unanimous YANBU.
I came on the thread as my elderly mum turns away all supports, saying she doesn't need it. She lives in an annex beside my brother and the assistance or Nursing Home conversation is on the horizon.
My DMs response of 'I'm not able to...' when she doesn't want to do something is worn well thin after 20 years. Like the boy who cried 'Wolf' perhaps it is actually true, sometimes, but I'm afraid I tune it out.

It's a shame your family don't have the privacy of your own home and garden on your time off. Going to a car park for a bit of family time is -ridiculous- tough.

A new technique I've learnt is to say inwardly 'what about me?'. Please try it. You've only one life.

IthinkIsawahairbrushbackthere · 24/01/2020 23:12

Thank you everyone. As I say, I have lost all perspective and have felt that I have no choice but to neglect someone - mum or the family?

I do get some time away - most weeks one of her best friends visits, bringing lunch with her. The day she comes is usually my husband's day off and also the day my daughter has a half day in college so we tend to go out for the day. Sometimes we just take our books and sit in a car park somewhere just to be alone! There are people who would happily come and spend an afternoon with her so I can have a break but she doesn't want them. She only wants me. When I do go out I call in to see her before I go so I can take her to the loo/make sure the tv is on/she is warm enough etc and the same when I come home.

If we go out in the evening I have to make sure one of my daughters is free to do her dinner and help her to bed although she will often insist on waiting up for me to come home.

The last time we went away (first time in 7 years!) she was taken ill and a few days after we came home she was rushed to hospital.

We need to go away for a few days in the next month or so and I will be organising it with my daughters so that someone will be able to look after her.

She has a tv in her bedroom mounted so that she can watch it sitting up or lying down and she has an electric bed so that she can get comfortable.

I spoke to the social worker last week and she is going to see mum without me being there and explain to her that I need to have help or she will have to go into care. I am dreading the visit because I know she will be so upset but as it is I am in tears everyday so I shouldn't feel too bad.

I have asked the pharmacist about having the tablets sorted but he said that the surgery doesn't approve of it? No idea why but it is only a very small part of what I do for her so I don't worry too much about that.

Someone asked about money? She and dad sold us this house at a greatly reduced price 20+ years ago. It was all above board and we signed a promissory note for the balance between what we paid them and the value of the house so in that sense we do owe her but we bought it so that they didn't have to pay the mortgage and it was as helpful to them as it was to us so we are pretty much equal.

All your answers here have prompted a very helpful conversation between my husband and I - there are things he can change about his work hours which will give me more time during the day to spend with her and maybe with the assistance of carers we can free up my evenings which is what I want more than anything else.

I get Carers Allowance and she gets Attendance Allowance at the lower rate.

I really appreciate all your comments. I think I can see more clearly now.

Thank you

OP posts:
oohnicevase · 24/01/2020 17:42

I presume you just get £250 per month for caring ? If so then she it's just not worth it is it !

oohnicevase · 24/01/2020 17:41

I never understand old people dictating what is going to happen to them .. did she give you lots of money for your house : annexe ? Just wonder if she feels entitled to your care .? Either way go with what pp said , carers or care home ,what you are doing is too much !

2020BetterBeBetter · 24/01/2020 17:31

I’m not surprised you are at breaking point.

I agree with others that you need to say to your mum that she either has the carers or else she goes into a care home.