What have I done? At the end of my tether

[NewKidOnTheBlock99]

Hello,

I’m hoping someone out there can come up with something I haven’t yet as a solution…

So my mum has never been in good health but has seriously declined in the last couple of years due to a stroke and advancing kidney disease. She was living in her own home with a family member but they were abusive and took advantage of her. We could never prove it and she always stuck up for said family member, we tried to get safeguarding etc involved but she wasn’t interested. It all came to a head and we managed to move mum away & close to us in a rental property- now full disclosure I was all for this when it was a long term plan as it was so stressful having her so far away as she is hospitalised quite regularly and never knowing if she was going to be taken or visiting was a four hour round trip and in my head I envisioned her being quite independent and getting care if needs be so I would be popping in once a week and doing the admin for her that I was already doing (ordering, banking, online food shop etc) but it would’ve been planned, the situation ended up being an emergency and she moved over night. Long story short her moving here has completely and utterly ruined my life and I don’t know how to undo it because I genuinely can’t cope & my mental and general health is seriously declining. I’m in my early 30s and genuinely feel on the verge of a heart attack. I have a 9 month old baby plus a six year old and I work full time plus everything else that comes with this stage of life - also managing another parent but that’s another story. I can’t believe how much care my mum actually needs - she phones me multiple times a day ‘just to chat’ and I get so overwhelmed as I just don’t have the time, I also resent that I get the guilt trips if I don’t pop in & so I try to but then the phone calls are on top of that, there are multiple trips to the shop for one thing despite me asking if she needs anything so I can do a big shop. She’ll let me know after she has run out of something important so I have to drop everything to get it for her I.e medication or toilet roll and even if it can wait it’s still an extra phone call to ask for something - she’ll often get confused about what she does and does not have. She has so much wrong there are constant hospital appointments and then things like optician, dentist, hair cuts etc which are actually really difficult to get her to. She frequently wets the bed due to her catheter so I have to run round and change it and if she needs to prep for any visitors she’ll call me to do the bits I.e take the bin out or pop and get cakes. Even when other family members come over to visit she’ll call me while I’m there for a chat & to check in & to tell me how amazing they are being to her on the visit. She has carers three times a day but it doesn’t feel like it’s improved anything as she refuses to ask them to do anything for her?? She basically goes on hunger strike unless someone is there with her 24/7 making her meals, it’s bizarre. I feel awful for my kids as they are so little and I’m run ragged I have zero patience and that’s when I’m actually here - I’m constantly darting off to do something and missing bedtime or dragging them with me, I’m dropping the ball at work, I just want to run away. Im just feeling so resentful as I do have siblings (without children) but we are all dotted about and they are either unreliable or just point blank refusing to help. Plus when they come mum puts on a show like she’s actually fine an can cope. What do people do when family simply just refuse to care for them & how do you even do this?? Can anyone think of any remedies to this situation?? I feel so trapped and like this could be my life for years/worse because she’s only going to decline.

Thank you if you’ve gotten this far - I’m really at the end of my tether with this I’m in tears daily because I can’t cope.

Wet sheets will wait until the carer arrives.

My Mum rings me with every crisis. I have learned to ask questions. When is the carer coming? Oh she’ll be there in half an hour. It seems sensible then, Mum, to wait until she is there.

How would she respond to a frank conversation? I’ve been in your position, I had the breakdown, and the time off work that went with it. I don’t recall explicitly saying to my Mum that the level of care I was having to give for her was what tipped me over the edge, but I expect I did explain that I wasn’t coping with two kids plus a full time job plus everything else, and I expect she did get it. And honestly, I had to draw some very hard boundaries to protect myself. I feel guilt every day still, but I’ve also discovered that actually, she’s pretty capable and resourceful when she needs to be and is in the frame of mind to be. It sounds like you have good support systems in place in the form of carers already. Your Mum is safe. For the running around, I’d tell her you’re going to be doing a weekly online shop. Even better if she can do it herself. Investigate local voluntary driver/ taxi services. Does the care agency provide services like that? My Mum’s will provide a carer to take her to appointments if necessary.

Remember, there is no obligation for you to set yourself on fire to keep someone else warm. And I don’t know your Mum, but I’d like to think she doesn’t want you to.

Why aren’t the carers doing the sheets? Does she need to be reassessed by the care team so they get more time? (Edited - does she have a hospital bed with waterproof mattress?)

Meds - local pharmacies usually deliver, just need to set it up with them, they will then liaise with GP.

Shopping - check what she’s got and set up a weekly delivery. Or have it sent to your house if it’s easier for you? Once you have her regular stuff ‘favourited’ eg loo rolls, coffee etc, it’ll be smoother to work.

Phone calls - set a time to answer. Anything else leave for voice mail.

You said she was in her own home previously. Do you mean she owns it? And is now renting?

Get her on a council list, they have over 55 flats.

Does she get Attendance Allowance? Could help pay for carers. Maybe get an assessment from social services too.

I can’t really add to what’s been said in terms of advice but just wanted to say I hear you. I had similar with my elderly mum. My children were teens at the time, eldest doing a levels and youngest GCSEs when she died. It was the worse time of my life and I’m still recovering a year after she died. She did spend the last few months of her life in a care home as she became unsafe living on her own. I credit that with saving me even though she wasn’t happy there. Whilst there was no diagnosis of dementia, there was a big gap between what she said she could do and what she was able to actually do. I didn’t ever crack the balance between caring for her and the rest of life and whatever I did was never enough (all my life that really). She just had a way of getting to me and I wasn’t strong enough to say enough of this. Even on her deathbed she called me names, that hurt a lot as I feel I’ve given her so much especially in those last years to the detriment of myself and every else. Many days I just wanted to run away from it all.

I strongly suspect there are many people, mostly women, in this boat. It’s a hard road to travel. I met a lot of kindness on my way but, if your parent refuses to engage, there is little you can do - either do it for them or be strong enough to set those boundaries and stick to them. I wasn’t able to do the latter.

Sending you kind thoughts and good wishes.

OP, the general repeated pattern of this thread is:

1. you have no boundaries and you and your children are suffering as a result
2. people here are offering brilliant solutions including ‘put boundaries in place’
3. you reply with ‘I know, but I feel guilty because my mother is a special and different/unique case’

Reality check:

Virtually all elderly people think they’re going to ‘get better’. It’s because they don’t want to face facts, which means acknowledging the end is coming.

Virtually all elderly people get worse in terms of needs and neediness over time.

Virtually all elderly people, when asked, ‘would you like the status quo or do you think it’s time to go into residential care?’ will say ‘my preference is the status quo, thank you’

Virtually all elderly people cannot or will not grasp that the people caring for them have lives of their own. There’s no sinister intent there, just a natural self-preservation adaptation.

Your elderly mother is not a special circumstance or anomaly justifying the guilt which you then use as an excuse to keep carrying on. She’s the norm.

A year or so down the line of you carrying on with the status quo you’re going to realise your baby is not talking and now has SEND. This is because they never had the high quality interactions with you because you were always on the phone or running errands for your mother. Your elder child might also be missing out on reading practice and falling behind at school. Both factors WILL compromise your children’s future, never mind the resentment they will develop.

Sorry if that’s harsh, but I don’t want you to carry on for another 20 years and make yourself ill.

As an older woman, I would be horrified to know I was breaking my daughter. You need to tell her clearly and absolutely that the level of engagement she’s expecting is breaking you and ruining your life. She needs to understand her demands are unreasonable and she must use her carers for needs such a bed changing etc.

There’s some good advice on the thread about shopping etc but be prepared to be portrayed as the baddie to relatives. Stick to your guns though and roundly defend yourself on survival grounds.

Guilt isn’t useful here and you must develop a thicker skin.

Hugs.
First put your own oxygen mask on - look after your health.
Then look after your baby and child.
Then your partner (do you have a partner?)
Then your income - job, business, whatever.
Elderly relative next.

No guilty feelings.

It's as if old people start to see whoever helps them as a part of themselves. They don't accept reality, so when they can get someone else to pop to the shop, change the sheets, turn the TV off etc, they think they've done it themselves. If noone does it for them, they either find a way, or start to see they can't do it, and become more appreciative.

There is no reason why the carers can't do the bed change. If you are doing banking you need to get Power of Attorney to protect yourself if/when she starts getting paranoid about money being stolen. You need to stop expecting her to change as she won't but you can change your reaction. Be unavailable and direct her back to carers and dont answer your phone so much. You have created a monster and now are expecting her to suddenly stop.

I feel your pain. I look after my mum full time now although I’ve got the odd day off. Sort of. It started when she broke her neck when my youngest was 18 months old. I don’t drive which doesn’t help matters but I was there 8am-7pm nearly every day for months helping her. Then she developed a condition which affects her mobility. She’s fine except for the condition which means she can’t safely stand or walk without a walker. She has carers 4 times a day to do her meals because she can’t stand to cook or safely transfer a meal to the table etc. I’m into year 5 of being her full time carer. This is what I do as ideas for you to try:
•Get an A4 diary and write all appointments in it.
• write your “days off” when you’re not available in it
• ask her to write down what what carer she’s had that day, reminders, appointment outcomes etc. Mum has lost the ability to accurately recall these things so it helps. Or would if she consistently did it.
• use the local transport service. Ours is a christian based one for medical appointments. They ask for a donation to cover fuel. There’s also a car scheme attached to the council who provide transport for appointments to the hairdresser, shopping trips, garden centres etc.
• do an online shop. It’s taken a long time for mum to get into this habit and not run out of things. It took me time to anticipate her needs too but now we have a good system. If I notice she’s low on stuff I’ll tell her and pick it up on my way or I’ll say shall I book a Waitrose delivery? Sometimes we share a shop if we both only need a small amount.
• ask her if she wants anything if you’re going to the shops and will be seeing her that day or the day after. Say that if she needs anything you need to know now as you won’t be going to the shops again
• pharmacies will deliver medication. Mum swapped to a dosette box system when she started getting confused about medication. It’s delivered weekly and the GP sends the scripts over to the pharmacy monthly. I only need to rectify any errors or prescriptions for antibiotics or similar that aren’t regular medication.
• Have emergency ready meals in the fridge or freezer for when she’s run out of things. Milk can be frozen so a pint bottle could be frozen for times when she’s runs out and you aren’t going. Butter and cheese can be frozen too. I always make sure she’s got a small loaf in the freezer.
• toilet roll can be delivered on a subscription from Amazon.
• I get mum’s denture care things like fixodent and brushes delivered on subscription along with toothpaste.
• carers will pick up milk if asked
• get adult social care involved to do a full assessment if they haven’t already. You can get one for yourself as a carer too. Our council assess me every year and give me £200 towards a break. They don’t do anything useful but the £200 is great towards a nice weekend break. I can’t go to the helpful things as I’m a single parent and they are not at convenient times.

It’s bloody hard so look after yourself.

theres probably more things but I’ll add them later if I remember.

Is there a carers organisation near to you? Or if not Im sure there will be national organisations supporting informal carers. It may be good to phone to talk to them and they can give advice. I’ve been in this situation as a ‘sandwich’ carer looking after a young child and an elderly parent at the same time so you have my sympathy.

As pp have said you need to put boundaries in place and organise things a bit better.

See if local pharmacy delivers. If she has multiple meds see if can get it in a dosette box.

One big shop, which could also be delivered potentially. You need to stay firm that you’re not running to the shop in between.

As pp have said put a boundary with the phone calls. One call a day or whatever you decide. She has carers so she is being regularly checked.

Speak to gp or district nurse about the catheter issue.

www.carersuk.org/help-and-advice/helpline-and-other-support/

I expect I am repeating but here goes:

You take over ordering meds and main shop. Far easier for you to do a regular weekly check than have her ringing you at all hours.

You say no to changing sheets, carers can do that.
Unless an emergency you will ring her between eg 6-8pm (or whenever works), she is not to ring you.
If she has funds then taxis to any appts that would work for.

Otherwise maybe keep one morning a week for appts / visits, so any appts possible stick to eg Friday mornings.

Ultimately if she won't eat without someone cooking meals then she needs to move into a residential / nursing home

Does she have a dosette box for her medication? I never have to order my dad's as the pharmacy do the weekly boxes and deliver them and they reorder from the GP when the scripts are running out.

I just need to add eye drops.
I have a list of all the food my dad orders as he eats the same thing. Plus the household stuff. I'm there about every 4-5 weeks so I check the big things like loo rolls and washing powder. And take a mental note if they're running out.

He phones me with his food order weekly and I do it online. I'm 2.5 hours away. He's 94 this month. He rarely phoned me whereas my late mil would phone several times a day despite having a husband at home and a busy social life.

You do have to say "no" but I wonder instead of saying "no" say " ok mum thanks for letting me know you need whatever I'll sort it when I'm next down. She doesn't need daily visits but I wonder if you need to speak to the care company to tell them all the problems as they should be able to put things like loo roll checks in place and get the bed checked daily by the carers and changed if it's wet. They could put it in the machine in the first visit and take it out at the second visit and make sure you have a few changes of sheets.
If she has visitors and you know they're coming then don't answer the phone as it won't be an emergency.

My dad has mobile hairdresser and podiatrist and I'm going to get Specsavers going in. I have to take to dentist but I try to spread that from 6 to 8 months to make it easier.

You're very young to deal with this too. I'm 62 my dad's 94. I couldn't have done it with young children and working.

Carers can do meals. That's not an indicator of needing a care home.

I would add to this that if there is a genuine emergency, she needs to call the emergency services, not her daughter.

if the carers are going in three times a day, why can’t she ask them to change the sheets?

1. Work out some boundaries, in conjunction with a care plan review with the care agency. Use it as an opportunity to reset expectations on what is your role vs the carers. Eg. Sheet changes, meals - very much carers.
2. Set up sustainable routines. Eg. Thursday is visit day and Friday is the supermarket delivery. On Thursday I’ll come round and we’ll write the shopping list. Get her registered as a vulnerable customer and do an online order for delivery. Stock up on toilet rolls, UHT milk etc and run a minimum stock level so that things don’t run out.
3. Make other visitors aware you’re struggling, and ask them to help with boundaries rather than encouraging leaning on you.

Then go on holiday for two weeks, and start the new arrangements when you get back.

Yes you need better boundaries otherwise this will drag you under. It's good that she has carers but perhaps you need to have a word with the care agency about them being more proactive over the sort of tasks she phones you about. And always direct her back to the carers unless it is something they cannot do (e.g. banking).

I made fairly liberal use of Do Not Disturb on my phone, and, for a time, had to block my mum's number and turn off voicemail.

How old is she? She may be in the early stages of dementia, which doesn't tend to make already unreasonable poorly boundaried people any more reasonable IME. It can make people pretty ruthless.

I have bad news for you: this gets worse. And your mum won’t acknowledge it, because why would she face up to her growing incapacity when you are cushioning every encounter with reality?

Do all the practical stuff suggested here: big online shops, stockpile loo roll, home optician, home hair dresser, pharmacy delivery, home podiatrist, daily book with carers. But you have to draw a line and communicate it to your mum. And stick to it. Only you know what you can do without grinding your teeth, and she’s used up a lot of good will. So it might be Sunday lunch together with your family, plus à call or a quick visit mid week. But you don’t exist to facilitate her life and you have tiny children and a full time job!

I really feel your pain on this one. My dad was a full time carer for a family member with declining health, including dementia that was getting worse. Despite advice from friends and family, he refused to consider carers or a home on the basis that it was his turn to care for them. My dad ended up having a massive heart attack and passed away. It was incredibly sudden and heartbreaking but on top of that we suddenly had the care of a relative we all love and adore but who had very little idea of what was going on. I moved away more than 30 years ago and its far enough away that it takes several hours to get there. I have work, a family and commitments that come with normal life. That didn't stop other family members suggesting I drop everything to 'move back home' to provide care. But I refused and they were not prepared to make the same commitment, so the only alternative left was a care home.
This has brought its own challenges, as the family member that still lives within 20 mins, insists on going to the care home every day for several hours to the detriment of her own and family life. She does this out of a sense of obligation, guilt and also because she worries what people will think. She also likes to stick the knife in anytime we speak about her sacrifice and how my life hasn't changed. The elderly relative doesn't even know who she is and has carers and nurses for her actual care.
Sorry, a very long message to say I know how you feel, the guilt is immense but you have to protect yourself and your family otherwise you will end up resenting her and your children will resent both of you.
Sometimes a residential home may not feel like the nice option but it can be the better option.
Sending lots of love and hugs.

I think the place to start is by requesting an adult social care assessment for her. State that she has significant needs and that your FT job and children mean that you simply cannot meet them so she needs external support.

It is hard, but ultimately she needs to be scaffolded into being a little more self-sufficient and to know where to turn for support (ie, not always you). Am having to explore this shortly for my adult daughter who is AuDHD but perfectly capable of most tasks with effort/support/established routines… but enjoys weaponising her incompetence to ensure her dad or me step in (or our home would be trashed).

We’ve realised that we have to step back or we’ll be picking up the pieces until we pop our clogs and that wasn’t how we saw the last 30 years of our lives. I’ve had to have some counselling to address my guilt at stepping away, the emotional stress of the past few years etc 0 but un the end I decided I deserved it and that my DH and other DC deserved the best version of me, not the frazzled crumbs left over after DD has finished with me. Can recommend that for you - your GP should be able to signpost you to a talkplus type therapy (there may even be a self-referral link on the GP surgery website).

Sending sympathy and solidarity. I have 2 children under 3 and a full time job and I can barely get to my own appointments -never mind someone else’s! You might be bored of hearing it but it’s all about boundaries. Of course she wants you being available 24/4 but it’s just not realistic with your set of circumstances and you are allowed to have your own life. As others have said she isn’t going to get better, even if she wants that to happen. I would limit the visits, use voicemail and wouldnt even do a phone call every day unless super short of when doing another task. It sounds like the vast majority of stuff simply aren’t emergencies

Thanks all this has been really helpful & I appreciate everyone who has taken the time to respond!

So the carers (according to mum) are not even there 5 minutes, there’s a couple of really good ones who will make her bed & do the washing up without asking - I will contact the care agency and find out exactly what should be in their remit.

To answer a couple of questions I saw, she’s 78 & does own her own home she is unable to live in so that needs to be sold. The flat is not adapted at all and she would definitely benefit from being somewhere with carers on site so I will contact the housing. I have this for my dad and it has provided massive relief, also with him it was constant phone calls and abusive messages but I’ve really hit my limit now I have mum to deal with so barely visit and only respond and speak when I can so I need to get better at that with her as well. She has people she can talk to so she won’t be completely lonely.

Just some insight into the boundary issue - I have been thinking on it since yesterday I’m not naturally a people pleaser, DH’s biggest
frustration is with most things if I don’t want to do something, I won’t but with my mum it’s different she was incredibly cold & emotionally distant when I was younger, the way she treats me now is always so grateful for everything, telling me she loves me constantly & generally nice as pie. She was also ill my entire childhood and on the brink of dying & that gave me anxiety, I’ve always looked after her to some extent. There’s something there with this which is why I struggle with her, it’s like I switch to being a child and bend over backwards to make her like/love me and it’s not intentional because as I do it I’m so bloody resentful & hate that I had such a miserable childhood (and what I feel like is because of my parents) my children are also having a rough time. I did have some therapy previously and we touched on it but it might be worth doing it again to really work on this!

It does depend how much money there is to throw at this. If the carers don’t take on bed changes, and you ask for a referral to the Bladder and Bowel service, is there money in the meantime for a daily cleaner?? A lot of cash but could be worth it for her (and you).

Are the current carers ones sent by the council? Private carers will do however long a visit you pay for so maybe supplement. Ditto a weekly cleaner, companion etc whatever works.
You don't have to provide the care yourself.