Newbie stuck in the middle

New to Carers Connect
1

Hello
Thankyou for allowing me to join your Forum.
I have looked after Mum with onset Dementia the past 4 years.
Mum still has a lot of ability to care for herself but the danger side and complex thinking is an issue and personal hygiene and meals is now becoming another step.

I don’t have any trouble looking after Mum when alone we have a good routine,
Mum understands my support trusts it and i hate to say the word compliant but can’t place another, meaning Mum eats well, agrees easy to being cared for, listens and isn’t rejecting or stubborn…we get on how we should and she allows me to look after her and we have a good relationship and laughs.

The problems happen when her friend of 15 years comes to stay the 2 nights meaning 4 half days in Mums home so no routine can be kept as i can’t do what i need to my presence isn’t wanted. So i go when they leave.

This person recently went away on holiday Mum was ill the routine for recovery kicked straight in 5 great days. As soon as this persons back no more routine, no wish to be cared for and doesn’t want me to stay long and Mum returns to speaking to me as if I’m in the way. ( I’ve been disspencible to Mum from childhood, I’ve acknowledged it, i know it I’m ok with it and I’m doing what a daughter does but its interffering with caring also Mum has nobody else that wants to visit her to care for her the rest of the family is AWAL no visits in 12 years)

I’ve recently found a pack of razors that my mum has asked her visitor for actually after i had asked for them not to be in her home. After a holiday fall out and nasty communications were he rang me and demanded i do something regarding a bill… that was already paid, but he doesn’t know because he’s not Mums carer/POA or bill payer?? So i had to draw a line and sit them both down and highlight my position and my job and responsibilities and ask him to stay out of my job.

Then Recetly a bottle of olive oil Mum had asked her visitor to bring for her ear.
I found it spilled over a surface near electrical equipment and the non slip flooring making it a very slip flooring. Not to mention the fact its a medical complaint and I’m her carer and im nit even told shes using it or its there?

I have had on going problems with Mums visitor who doesn’t respect my position at all and undermines it on regular occasions. I do see it as a hard situation for them. They have been partners living apart for 16 years but he’s not able to nor willing to look after mum full time and his judgments are very poor regarding her dementia and abilities as it shows from the razors and oil.

I have tried to include him in many things over the years even sharing a holiday which i thought was my last with Mum and he ruined the last morning by being absolutely antagonistic and bitter because he didn’t want to leave and took it out on me ( I’d been awake most of the 2 nights ensuring Mum didn’t leave her ensuite and roam around and im also the only driver)

I am very close to leaving Mum now due to this problem as every 2 days there is an issue with what i do fior Mum

This week i ordered lots of clothes online of different sizes and did a clothes fitting with Mum ( it was fun we had a laugh) and we had it all sorted , i drove into town returned any no good got correct sizes and it was a good result for Mum and my days work.
Last night i got a call from Mum telling me what i goit her was wrong its to big. I said “they are fine they just need the elastic adjusted” but Mum replied “no they are the wrong size WE’VE” just tried them they are to big they fall down" I was absolutely heart broken to say the least 3 pairs of lovely trousers, the time and trip into town exchanges fantastic work and Mum with lovely new clothes and happy…then its all thrown out the window when he got there.

I actually don’t want to do this anymore. I want to cancel my caring position to Mum, i want to go to work, pay my mortgage, not watch my assets rotting while i drown on £60 a week . My mental health is at its wits end my physical health is a mess and I’m having heart tests at the put patience i simply don’t want to be a part of it all anymore.

2

Welcome to the forum.

This is a very difficult position, and I’m (unusually!) struggling to suggest anything as far as mum/her “partner” are concerned. Definitely three’s a crowd.

How old is mum?

When did you last have a holiday?

3

Hey
To me this is the key. If that is your Mum’s attitude to you so you want to go on caring? You really don’t have to. This doesn’t have to be what a daughter does unless you want to carry on doing it. I feel responsible to my Mum to make sure she is safe, cared for etc, I care part time, and give some care, but not all. I also work and have young kids. You can step back, get some care in and get a job if that is what you want to. Why don’t the rest of the family visit? Do you have siblings? With your Mum’s dementia she is probabaly beyond reasoning with about her partner’s behaviour and it sounds like he is in denial, so perhaps it is time to step back and get some help if he is making your position as carer too hard? There is no shame in this if this is what you want. You are important and entiteld to your own life too.

4

How old is the “partner”? If mum is old enough to have dementia, then is he too?
Do you worry about his motives for the relationship?

5

Hello Thank you so much for your replies,
Holiday wise i get a couple of days off when i want it but i can guarantee ill end up at mums there is no cut off really unless i go along way away so j get 4 days a year if i go. Last one was 2015.

Mums partner is 76 has just a disgruntled angry arrogant man who absolutely hates being told what he ca and cant do with Mum.
Sadly today it all came to an end, i got to mums and she’s written a note to me that she wants to change her carer ( after her operation thou not now today but after jist so i can be used a little longer) She’s done this under the guise that I’m to tired to be looking after her but i find this odd as mum can’t write 2 sentences let alone 8 but it was mums writing…very sad when 10 days ago we had a lovely week.

Her visitor sat there in total denial and won’t accept he is a problem and he won’t ever give up ( i have been given the option to have him banned from the building as mum is in a warden controlled self contained flat, so wardens word is final but that would kill my Mum.)

When i told her she chooses her life of independence with him over my efforts of caring she told me i was talking rubbish.
I starting to believe that mum isnt as dementia as she makes out.
But she is going yo be very unwell tomorrow and the nect day as yesterday her pill despencer didnt work and she choose not to tell me, so shes 24 hours with much needed antidepressants and 24 hours without heart tablets. It wss horrible as she looked so old and unwell today anyway.

Theres more things that have happened over the last couple of days but its over now he can look after Mum but sadly her flat will smell within 2 weeks, she will deteriorate fast, she will end up in hospital.
His motives I’ve no idea what they are but his wants have come before Mums needs as he is doing it now.

I had the commode in the front room after a big foot operation so we ciuld all be together and mum not have to move kire than a shuffle.
Mum needed to use it she asked him to leave the room and he kicked off in a big mood saying he’s being ostracized it absolutely broke my heart to pieces to see his disrespect towards her this was just 3 years ago and he can have a fiery temper but mum trusts him and says hes never hurt her and i don’t think he has physically but i think he feeds her mind to what he really wants and she treats him like a child so won’t take her wheel chair out with them if he has a moan about it. ( so risking a fall)

When i went to the GPs with Mum to do her wish of palliative care or DNR she expressed her fear never to be left with him as her carer especially taken to his house, We did POA without him knowing and mums will. He wasn’t pleased at all, i know none of this makes sense this is the triangje mum has played me in the past 8 years. Yet she’s happy to see him so sadly they can just be together now… That’s mums wish.

6

Im.sat in my car cryiing writing this she looked so ill today, she is still my mum. I wanto to ses her now but he is there over night. So i will be the bad guy ( story of my life mind you ) I’m going to find it so hard to walk away but i have to.
Having care in…its odd as Mum does but also doesn’t need caring so narrowing down what needs to be covered is very hard as it can change from week to week, from new teeth, new phone, new glasses as they get broken or put out with the trash , urine infections, prescriptions, dispenser filled, food shop, flat cleaned, carpets washed, rugs changed regular,shes asking for her curtains to be washed and last week i spent 2 hours unblocking her toilet after her visitor rang me to update me on its delights…i literally get called for everything! and theres much more but thank you its made me realise i do need to write a list of her needs and give them to someone else.

7

Now IS the time for you to go on holiday. Turn your phone off or leave it at home, and get right away from it all.

If money is a problem, just unplug or turn off all the phones, put a DO NOT DISTURB notice on the door, and have a “holiday at home”. Early nights, long baths, staying in bed longer than usual, long walks, maybe a meal out, or coffee and cake?

I used to get my kids to “play at being holidaymakers”. We live on the south coast, couldn’t afford to go away much.

On a nice day, after school, my son would get his Action Man boat, tow it up and down the quay on a piece of string, enjoy watching the boats, then we’d have an ice cream each.

3 months after I was suddenly widowed, I was nearly killed in a car accident, ended up using a walking stick for a few years. I had a lovely holiday near Chichester, only about 35 miles away from home, the furthest I could drive then. I stayed somewhere fairly cheap, took a book to read, and had a great few days mooching around the little towns in the area which I’d never explored before.

I KNOW that you will be worried about mum, but I’m worried about you. You NEED a break from all these goings on, but most of all, mum needs to learn that this man is not helping her at all. If she ends up in hospital, that is HER fault, not yours.

8

Came home wrote a 4 sided letter to the warden and went back and posted it in the wardens box for tomorrow
It was Heart braking being below mums window knowing full well she is hurting as well and we need to hug it out but she won’t ring me because he is there.
So its done now I’m officially resigned i explained what she needs and the one thing I’ve always kept at bay is strangers going in the flat and the social services support system the 2 things mums never wanted and been scared of but she will now need to be registered as having no support system.
A realisation also is that mum is dying and she loves this man if she wants to spend her last years with him then I’m not going to stop it , i do think the interruption of him coming and going is now causing confusion in mums daily thinking but I can choose to be there now when i like and when he isn’t and ill just be visiting my Mum.
I’ve advised the warden i can’t force mum to listen too me or let me care for her but i will never give up POA .

9

Updated GP they’ve removed my details.
I’ve been to see Mum gave her a hug cried it out it was like a good bye so very odd. I explained how things are she’s either very happy or is so far removed that she doesn’t realise or understand the fall out and implications of this.
I’m am very worried about her and as i left she said stay in touch its set now that I’m going over to visit her every Friday as her Daughter not her carer.
Her car (which i used to care for her passed its MOT today and ive no idea what to do with it? It will have to go outside Mums home) ) it didn’t even register to Mum and she loves her car its her days to to go and see the sea ( she grew up by the sea and loves to sit and look out) but i honestly don’t know where she has gone but the 1 good thing now is that Mum will get an assessment as the GP will have to go to visit her.
I know have to start over how the he’ll do you do that, before mum i cared for a family vulnerable minor for 5 years.
I haven’t worked for a decade, I’m 5 stone over weight my health is horrendous.
Where do people restart?
I won’t actually have money to top up my electric without work as im now classed as making myself unemployed.??

10

What a hard situation. I’m so sorry it has been traumatic. You have done the right things now think about YOU. That is all you can do.

I don’t think you would be classed as voluntary unemployed given the circumstances? You didn’t want to leave. I would get yourself to the Job Centre and see what you are entitled to as a starting point?

I was 7 years out of work and found a job OK. Really think about all the skills you have been using whislt caring - people skills, negotiation, time management, budgeting… many more and all applicable to a work place.

Dealing with being over weight is a great place to start in reclaiming you. Getting out and getting your 10,000 steps, download the NHS couch to 5k app, join weight watchers, join an exercise class, join a walking group, borrow a dog to walk. Whatever appeals to you. Exercise is great for menal health.

This won’t be easy, so take one step at a time and reclaim your life and please be kind to yourself.

11

Thank you Sally
When i first started caring for Mum i would ride over on my MTB then I had to stop as to many chores and stuff to bring back and forth.
Bikes sat in my lounge now for the paat 4 years, I only thought today i can ride that now when ever i like. Its was also the mental exhaustion thats stopped me.

Viewings on my house which is up for sale are increasing and fingers crossed I have a fresh start ahead.
I was a night club photographer up until 2 years ago but I could see the health decline coming on from 3 years ago. I was an unpaid hobby at friends event.
I was up trees and over walls at protests clicking away and looking back now that wasnt so long ago…i can get that drive back!
So i need to get back where i was, its going to take time and loneliness will kick in and i will get past it , I have no friends that ring now, I’ve not seen anyone socially for months. My phone only rings for Mum & Son/grandkids.I’ve just been to negative to socialise I’ve not had much positive to share but My grandchildrens smiles are my medicine and have kept me going.

My plan tomorrow is finish fixing the roof of my campervan and get that ready for its MOT.
( I now plan to live in it a bit and travel when the house sells. )
Ill Then renovate a house.

Im going to Cycle every day starting off slowly, with Short trips.

Concentrate on my horrendous eating habits.

Find time to relax.

In a couple of days when i haven’t seen Mum I’m going to be at my wits end but i have a feeling g i will receive a phone call asking why i haven’t been in but My phone is on do not disturb now for 3 days to allow me to process quietly.

Thank you for all the support I’m going to have a read around now and see if i can give some back. Xx

12

Julie, I SO relate to all you say. Also been times when I just can’t see time, or find mental energy to exercise. I got a dog so I HAD to get out. It does me good.

Bike sounds like a fantastic start. Good for you. You will get there.

As for friends. I’ve also lost touch with a lot of people too. I couldn’t find the mental energy to talk about the situation or the time to meet up. But I am making an effort to contact old friends again. Most of whom are pleased to hear from me. I’m sure you will meet friends again. I think as you get older and start talking to people, you find many of us also have caring responsibilites and will understand why you have been away.

Best of luck with finding the old you.

You are still there for Mum, just in a different way and maybe that is a good thing. You can do fun stuff together rather than caring.

13

Thankyou Sally
Im job hunting today , the thought of a nice income, no money worries, and a life …id like to say my heart is in it but its the old routine.
Scared to make a change knowing you will just get dragged back in.

My son rang Mum yesterday she told him she has a hospital appointment Friday??? and as I’m not her carer now she’s getting a taxi??

I just have to stay strong and focused i want this change now anyway but its very conflicting. :-???

14

It’s going to take a while before you feel comfortable about everything, so be kind to yourself.
Good luck with the job search.

15

Hello I’ve not updated for ages, i left mum for around 5 weeks just seeing her on a Friday and she deteriorated very quickly.
Her “,friend” had made it so hard for me to contact mum or check her wound that she was basically neglected clothes covered in food,

Luckily this man left her to go on holiday for 12 days and in those days i stayed by her side, picked her up gave hera reason to want to live tomorrow.
Mum Is now healthier happier alert more than the past 2 years and she can have good conversations and given capacity by the GP.
Mum finished the relationship but at 88 this wasn’t easy and she is vulnerable emotionally.
Mum has unwanted visits from his family members and her own brother that is insisting her ex have access.
We have been on 2 wonderful holidays after which she asked for 2 new phone numbers mobile and home, so she can’t be harassed.
Sadly her brother came to her flat yesterday trying to force her back with her ex and took her phone numbers with out asking and Mum has asked me to change them again which i can’t do as I’m now having accusations made at me .
The past 6 weeks she’s not had 1 week of rest its like they are playing communication ping pong between them ( brother and Ex)
She is now once again lost, exhausted, thinks she can’t say what she wants due to them not caring so feels she now has to do as she is told.
I caught her brother out yesterday Mum rang him to get home talking and he is telling her I’m writing all her contact letters to people with out her knowing.
I have spent the morning meeting with police who don’t find any of this as harassment.
I’ve now been informed that of her ex chooses to he can demand a deeper capacity check than her GP then he can apply to the courts and get access like you do with a child.
Mum never wanted or wants social services in her life…who does if not necessary none of this is what mum wants but where she is being worn down , anxiety, she’s reverted back to confusion.
I’m absolutely mortified and at my wits end that this man who cares very little for her wishes may force his way back into my Mums life through court.
Who does this type of thing to someone. I myself am at breaking point i myself just want to throw in the towel none of this can be right ? Can someone please help me by saying this isn’t normal behaviour or its me that’s losing the plot?

16

This is common unfortunately. Can you hire a lawyer or not?

17

I called 3 solicitors all ssid the same thing if i have POA she doesn’t need to see one, but even with my POA nobody’s listening to what mum wants and now her brothers attacking me to get the POA removed.

Why i find this so hard to digest is this man is not blood, marriage or anyway connected to Mum.

Mums asked tonight for me to change her home number again so she can answer her phone without being nervous.

Sadly its now becoming a parent that anything I’m doing is seen as wrongful support???

18

What you are doing is what any daughter would do for a vulnerable parent.
Why does her brother keep interfering? He has no right to interfere.
Mum needs to have an answerphone and then put it on 24/7 so that she doesn’t have to speak to anyone she doesn’t want to. She can then listen to the beginning of the call and decide if she wants to answer it. I would suggest she doesn’t delete any calls until you have heard them.
Who has keys to the flat? Why not change the locks? Does she have a door chain?

19

Hiya Bowlingbun
Answer phones a good idea ill look into that it has to be something she doesn’t need to control.
Keys have been handed back with a goodbye letter but then he changed his mind and is demanding contact.
Its flats council locks and council warden who is now suggesting she wants the relationship.

Brother is barging in as best buddies with her ex friend.
Bottom line really is 2 old male chovianists, very low value of women who should do as they are told to an extent, and unbelievable a women could exist without a man.

Mums called the ex friend last night so hard for her at 88 it was dreadful to listen to but she definitely put him in his place but once he started pushing for answers and demands she got confused again.

Why an 88 year old should have to ring anyone to make badgering stop is horrendous.

Some great news thou, took Mum in to GP for a well being test and Dementia has never been written in her file, she had scans and no sign of disease its just old age.
Its down as cognitive impairment which is possibly why it hardly changes? And what and how mum gets impairment depends on the amount of stress and sleep just like anyone does.
She has capacity as much as they could tell today on a basic appointment.
She also stated if they make her see him she will want to move, but i think they will block her. They are trying to push for SS to come in and Mum is getting cross but alsp confussed by it all and that is all they choose to see…
I took Mum away for 5 days no sign of confusion at all, as not sat in the pressure pot that is her home.

What Mum is and is having done to her is constant questioning,his name brought up all the time and so she gets confused under pressure. Its certainly made me realise that i would never rush into council housing for old age as you can be anything they want you to be as they see what they choose too see.