Exhausted

Jakesterblack

Registered User
May 20, 2022
75
0
I have just come across your posts @Jakesterblack and it took me a while to read through everything. What shines through is your resilience and love for both your mum and your sister. I cannot imagine how you have kept going through these quite dreadful times. I do hope the meeting yesterday results in some positive action. If not, I can see you have a plan of action. Phone the ambulance, and again if you need to.
Hi, I have honestly tried everything that i can and now have reached that point where i have to accept I can't look after mum any more and have to let social work do what they need to, i just wish they would do something even if just carers coming in because i'm struggling holding down my job and dealing with mum on top of everything else and i said to my sister it's important that me and her get time to spend with each other while she is here and i know i'm not resenting mum for taking that away from me. I just want to book a break and go away with my sister and make memories. Thank you for your reply it's always nice to know someone is there that truly understands x
 

sheepfield

Registered User
Feb 4, 2024
157
0
That sounds so difficult. My mother in law is sleeping all day, not taking meds, not eating too. Happily social services have seen this and that me and my husband (both autistic yay!) cannot care for her. They have also laid it on firmly to her that she needs to have care at home or she'll have to go into a home.
It sounds like the cruel disease of dementia has made your mum so aggressive. My mother in law has been grouchy a couple of times but so far her refusal of care has been gentle.
I'm so sorry that you're going through this. Have you and your sister had a carers needs assessment? It could flag to the authorities how much you are struggling. It's hard to help people when we have our own challenges. It also strikes me that the needs of a person with dementia can outstrip what any family carer is able to give.
 

Jakesterblack

Registered User
May 20, 2022
75
0
That sounds so difficult. My mother in law is sleeping all day, not taking meds, not eating too. Happily social services have seen this and that me and my husband (both autistic yay!) cannot care for her. They have also laid it on firmly to her that she needs to have care at home or she'll have to go into a home.
It sounds like the cruel disease of dementia has made your mum so aggressive. My mother in law has been grouchy a couple of times but so far her refusal of care has been gentle.
I'm so sorry that you're going through this. Have you and your sister had a carers needs assessment? It could flag to the authorities how much you are struggling. It's hard to help people when we have our own challenges. It also strikes me that the needs of a person with dementia can outstrip what any family carer is able to give.
Hi, ye we have honestly tried every avenue, i just hope something is going to be done in the next couple of days. In an ideal world if she had accepted care a long time ago she would maybe have been able to stay at home but the way it is it's beyond that point at the moment...
I hope you can get something sorted as you sound like you are having a time of it also. I think there is only so much we can do x
 

Jakesterblack

Registered User
May 20, 2022
75
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That sounds so difficult. My mother in law is sleeping all day, not taking meds, not eating too. Happily social services have seen this and that me and my husband (both autistic yay!) cannot care for her. They have also laid it on firmly to her that she needs to have care at home or she'll have to go into a home.
It sounds like the cruel disease of dementia has made your mum so aggressive. My mother in law has been grouchy a couple of times but so far her refusal of care has been gentle.
I'm so sorry that you're going through this. Have you and your sister had a carers needs assessment? It could flag to the authorities how much you are struggling. It's hard to help people when we have our own challenges. It also strikes me that the needs of a person with dementia can outstrip what any family carer is able to give.
We are still waiting, mum's foot got worse and GP had refused twice on Monday to come out so i called them again on Friday and sent them a picture as her foot blue, i was really hoping they would say she has to go into hospital but no another course of antibiotics. I took three days holiday as i work full time in the office and can't wfh. Myself and sister up and down four times a day and doing what we can but mum in bed constantly and think she is now not even making tea/toast which at least she used to do that so she is just lying there. Called GP again yesterday and social services again.. just not getting anywhere and we are exhausted. Also cleaned her house on Friday and got accused of all sorts. It's just awful and getting worse every day ...
 

sheepfield

Registered User
Feb 4, 2024
157
0
Oh that's so difficult to witness. I'm not sure that my mother in law can make a sandwich or open a ring pull tin but she just tells me that she's already eaten and won't eat things that I leave in the fridge.
Today I arrived and her flat was full of thick black smoke as she'd tried cooking again. Switching off the cooker at the fuse box was an easy fix so why didn't the housing company do that? My mother in law didn't even realise that there was any smoke.
Community Meals AKA meals on wheels has been suggested to us. Drivers can let themselves in and plate up a meal. I'm hoping that mother in law will accept this as the local authority has no capacity to start social care.
Take very good care of yourself. I was at martial arts last night and hope to see a friend tomorrow after visiting mother in law.
 

DeeCee7

Registered User
Oct 13, 2023
279
0
So sorry to hear you are still struggling to get any support @Jakesterblack . Have you considered telling SS that you have booked a respite break for you and your sister and will be out of contact for a week ( or two) and put the ball firmly in their court? Drastic but it might work.
 

Jakesterblack

Registered User
May 20, 2022
75
0
Thankyou for replying. I called social work again today they basically have said they don't have any carers and are still working on it... i said even one day is better than nothing, i told them we are exhausted and i'm leaving my work in Glasgow to drive home and then go back into work as i can't wfh. They just don't seem to care. Told them mum all over place with meds has no idea what she is doing and we need help.
 

sheepfield

Registered User
Feb 4, 2024
157
0
Ah it's an ongoing nightmare for you, so hard. You have all my sympathy.
The fire brigade were at my mother in law's yesterday during the billowing smoke incident and whilst it wasn't nice to see her upset, I'm hoping that this will convince social services to get a move on. A year ago it was ambulances as she kept feeling faint in the street, at the post office etc. You'd think that they'd realise that a proper ongoing care plan is cheaper than all this emergency care.
I wonder if in your case a 'stern' visit from a professional might convince your mum to go into a home?
It's so hard when people refuse treatment. I hate to bring it up but do you think that your mother's foot might eventually require inpatient treatment? It wasn't till my mother in law had a fall and spent a day in hospital that she finally had a social care assessment so something similar might trigger some action for your mum. Though of course we don't want the drama of inpatient treatment and fires at home.
 

sdmhred

Registered User
Jan 26, 2022
2,169
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Surrey
I keep getting told they realise preventing crises is money well spent and much more effecient - but I find throughout the system, ‘the systems’ just seem rigid and not set up for that. It really is frustrating for all.
 

Jakesterblack

Registered User
May 20, 2022
75
0
Ah it's an ongoing nightmare for you, so hard. You have all my sympathy.
The fire brigade were at my mother in law's yesterday during the billowing smoke incident and whilst it wasn't nice to see her upset, I'm hoping that this will convince social services to get a move on. A year ago it was ambulances as she kept feeling faint in the street, at the post office etc. You'd think that they'd realise that a proper ongoing care plan is cheaper than all this emergency care.
I wonder if in your case a 'stern' visit from a professional might convince your mum to go into a home?
It's so hard when people refuse treatment. I hate to bring it up but do you think that your mother's foot might eventually require inpatient treatment? It wasn't till my mother in law had a fall and spent a day in hospital that she finally had a social care assessment so something similar might trigger some action for your mum. Though of course we don't want the drama of inpatient treatment and fires at home.
I eventually got a GP out last week and actually said to her can she not be taken into hospital and given antibiotics for her foot and she basically said at the moment it's not that bad that she needs hospitalised, i also said if i called an ambulance myself and she said they would come out eventually but not necessarily take her in or keep her in just feel like nobody is helping.
 

sheepfield

Registered User
Feb 4, 2024
157
0
I'm so sorry to hear this. We are all living a nightmare.
My mother in law has accepted a befriender and meals on wheels. I don't think for a moment that it's a substitute for social care but you might find that something like this could help you. Even if your mum doesn't want a befriender or meals on wheels it could give you a break from your own cooking, laundry, errands etc.
I've visited my mother in law less this week as she was worried that I'd fallen out with my husband and was avoiding him! But I'm still deep cleaning at her home as well as looking after my husband and home as well as working part time. It's so rubbish isn't it and no end in sight.
 

Jakesterblack

Registered User
May 20, 2022
75
0
I'm so sorry to hear this. We are all living a nightmare.
My mother in law has accepted a befriender and meals on wheels. I don't think for a moment that it's a substitute for social care but you might find that something like this could help you. Even if your mum doesn't want a befriender or meals on wheels it could give you a break from your own cooking, laundry, errands etc.
I've visited my mother in law less this week as she was worried that I'd fallen out with my husband and was avoiding him! But I'm still deep cleaning at her home as well as looking after my husband and home as well as working part time. It's so rubbish isn't it and no end in sight.
 

Jakesterblack

Registered User
May 20, 2022
75
0
Hi, It is like you say you feel like there is no end in sight and it's exhausting. Social Work got back to me yesterday afternoon and said they had found a carer for mum and she was going to meet me at mum's last night while i was down making her dinner etc and she was lovely we chatted and at first was all ok and then mum just lost it and said she didn't want carers and didn't need them and does everything herself all the usual stuff goes into town on the bus for coffee etc all the things she done over four years ago. I actually said to the carer i can't listen to this again as i constantly hear it over and over. She said nobody was coming in, carer is set to go this morning and test the water so to speak and i'm just staying away. I can't honestly see this working although if it did it would be a god send. If this doesn't work mum is going to end up in a home as we can't carry on looking after her. When we arrived yesterday the soles of her feet were black and i think she has been either out the front or back garden in her bare feet and nightdress so no idea what she is doing and neither does she..... it's awful, i watched my dad struggle for years with cancer and thought it was the hardest thing but this is so much harder at least i could have conversations with my dad right up to the end and he was so placid he just done whatever was easier. Mum just digs her heels in at every turn and it's exhausting. I hope you can try and get a wee bit of time to yourself to recharge, it's not easy is it x
 

Misslovely

Registered User
Mar 22, 2021
93
0
I’ve found that rather than asking my parent with Alzhiemer’s about things like cleanersI just arrange them (I have deputyship). I make sure I am at the house when they arrive and introduce them to my parent. They can usually win her over and I ask her if it would be OK if they can clean her house and then she usually agrees.

Maybe your Mum is feeling out of control and you need a different approach
 

TryingToRetainGrace

Registered User
Aug 23, 2019
26
0
I’ve found that rather than asking my parent with Alzhiemer’s about things like cleanersI just arrange them (I have deputyship). I make sure I am at the house when they arrive and introduce them to my parent. They can usually win her over and I ask her if it would be OK if they can clean her house and then she usually agrees.

Maybe your Mum is feeling out of control and you need a different approach
I totally agree. I have to basically get my dad to daycare 3 mornings a week under false pretences, I say I am going to run errands and he wants to come. He can’t remember how to get to his kitchen but he has started to recognise the journey to daycare. I have found myself going on more and more creative and long winded routes so that he doesn’t figure it out, it is crazy. When we pull up he says “oh no, you are not going to leave me here are you?” Sometimes he kicks off and refuses to get out the car. It is horrible and stressful - he is my dad and I don’t want him to be cross with me. If I told him where we were going he would have a tantrum and refuse to leave the house.

I pick him up and 99% of the time he has had a great time.

I am dad’s live in carer and for what it is worth, from my experience, this is my advice:

You need a break. I need a break. I cannot do it 24/7. I will have a breakdown. So to protect my sanity and to keep the arrangement for dad’s care as it is for as long as possible, I need some time off. Do not feel guilty.

We have to just turn up to places. If we discuss it beforehand, he won’t remember it anyway but often gets stressed. So although I feel terribly like I am tricking him, it is the only way.

Usually the caregivers are lovely, chatty, engaging and soon have my dad charmed and talking with them. I know this is not going to be the case for everyone.

Although it goes against all my natural instincts, I am the parent now, I am the responsible adult. So I have to make the decisions based on my dad’s welfare (and my own), unfortunately whether he likes it or not. It is hard. But you know it is the best thing for your loved one, as they are not able to make a rational decision for themselves. You know the decisions you make are solely to keep them safe and you can rest easy at night knowing that.

It is ok to prioritise your own happiness and health. In fact it is vital, otherwise you can’t do your caring role.

My friend said something that really struck a chord the other day. I was stressing about my dad going to respite care and feeling so guilty. She said “it’s not like you are abandoning him by the side of the road, you have researched and found him a really nice place. Him going there is still you caring for him as you have made sure he is well looked after”. This really helped me.

Wishing all of you the very best cause this is unbelievably hard.
 

Violet Jane

Registered User
Aug 23, 2021
2,038
0
Sometimes, it is best to start small, with a cleaner as many people, of all ages, have them. People can be very resistant to the idea of needing care but they may be more receptive to a cleaner if you say that other people have one e.g. Janet from up the road or Auntie Sue. Alternatively, you can appeal to their sense of status e.g. all middle class women have cleaners now. Or you could say that someone needs a job. From a small beginning you can build up.

Some older women may like the idea of a 'home help', particularly if their mothers had one, which was relatively common in the past.
 

Jakesterblack

Registered User
May 20, 2022
75
0
Sometimes, it is best to start small, with a cleaner as many people, of all ages, have them. People can be very resistant to the idea of needing care but they may be more receptive to a cleaner if you say that other people have one e.g. Janet from up the road or Auntie Sue. Alternatively, you can appeal to their sense of status e.g. all middle class women have cleaners now. Or you could say that someone needs a job. From a small beginning you can build up.

Some older women may like the idea of a 'home help', particularly if their mothers had one, which was relatively common in the past.
Hi, ye unfortunately tried all that even got my friend who is a cleaner to pop in but she was so rude. We have managed to finally get carers in but she isn't accepting them that well, she isn't happy said she doesn't need them and doesn't want strangers in her house so the carers are in and out in minutes.. won't let them make her food and she is losing weight. I just feel like every single thing is a battle and she can be so nasty the way she speaks to us so now thinks we are up to something and said she isn't having all these people coming in and out of her house...
 

Jakesterblack

Registered User
May 20, 2022
75
0
I totally agree. I have to basically get my dad to daycare 3 mornings a week under false pretences, I say I am going to run errands and he wants to come. He can’t remember how to get to his kitchen but he has started to recognise the journey to daycare. I have found myself going on more and more creative and long winded routes so that he doesn’t figure it out, it is crazy. When we pull up he says “oh no, you are not going to leave me here are you?” Sometimes he kicks off and refuses to get out the car. It is horrible and stressful - he is my dad and I don’t want him to be cross with me. If I told him where we were going he would have a tantrum and refuse to leave the house.

I pick him up and 99% of the time he has had a great time.

I am dad’s live in carer and for what it is worth, from my experience, this is my advice:

You need a break. I need a break. I cannot do it 24/7. I will have a breakdown. So to protect my sanity and to keep the arrangement for dad’s care as it is for as long as possible, I need some time off. Do not feel guilty.

We have to just turn up to places. If we discuss it beforehand, he won’t remember it anyway but often gets stressed. So although I feel terribly like I am tricking him, it is the only way.

Usually the caregivers are lovely, chatty, engaging and soon have my dad charmed and talking with them. I know this is not going to be the case for everyone.

Although it goes against all my natural instincts, I am the parent now, I am the responsible adult. So I have to make the decisions based on my dad’s welfare (and my own), unfortunately whether he likes it or not. It is hard. But you know it is the best thing for your loved one, as they are not able to make a rational decision for themselves. You know the decisions you make are solely to keep them safe and you can rest easy at night knowing that.

It is ok to prioritise your own happiness and health. In fact it is vital, otherwise you can’t do your caring role.

My friend said something that really struck a chord the other day. I was stressing about my dad going to respite care and feeling so guilty. She said “it’s not like you are abandoning him by the side of the road, you have researched and found him a really nice place. Him going there is still you caring for him as you have made sure he is well looked after”. This really helped me.

Wishing all of you the very best cause this is unbelievably hard.
Hi, just wanted to post update, mum had carers for past five weeks, three times a day, wasn't happy but she had a fall and hurt her leg so we said they were nurses coming in to look after her and got away with that for a bit, her leg got worse and she has now ended up in hospital but only been in two days, first day she was ok, actually really good form and me and sister were relieved someone was looking after her but yesterday so confused, the most confused I have ever seen, wandering about during night and pulled at another patients hair - she has never done anything like this before, by the time I got up she thought she was in Belfast on holiday and was staying in hotel and the nurses were basically "guarding" her room... no urine infection, but i called her carer and she said hospital delerium is a thing and if they feel scared or confused with new surroundings they can invest a scenario which makes them feel safer??? Anyone experienced this?
 

Collywobbles

Registered User
Feb 27, 2018
176
0
…she said hospital delerium is a thing and if they feel scared or confused with new surroundings they can invest a scenario which makes them feel safer??? Anyone experienced this?
Absolutely yes.

My Mum was taken to hospital with a suspected heart attack and completely lost the plot. She phoned family members multiple times a day, often convinced that she was in a hotel where Dad would shortly be joining her, or she was in an airport and couldn’t find her passport, or (when she was in a side room and no nurses were visible) to tell us that she’d been kidnapped and needed rescuing from an abandoned warehouse. It was so bad that the ward staff called in the Dementia folks, who did manage to help her a bit. They provided a tablet with various games on it, which distracted Mum from at least some of her phone calls and imaginings. Maybe that would be possible for your Mum?

If it helps, this subsided greatly once Mum was back home, although there had clearly been a significant step up in her overall dementia symptoms. The silver lining for us, was that she came out of hospital with a formal dementia diagnosis and offers of more support (all of which she angrily turned down, of course!)
 

Helly19682

Registered User
Feb 26, 2024
57
0
@Jakesterblack - my father had delerium both before (after a bad fall) and whilst in hospital, where he still is at the moment.
He was physically attacking the staff and told me he had been to Russia (god knows where that came from). He told me if I did not take him home immediately, I must give him the car keys and he would drive himself. This is a man who gave up driving five years ago and had just damaged his spine in a fall, so could only lie flat. Visits were a nightmare. He would frequently tell me "they are all mad here" perhaps because that was easier to believe for him than him being ill.

He is still in hospital, but whatever accompanying infections he had, alongside the fall, have receded and he is now calmer. We don't yet know how far he will be able to get back to his baseline (physical and mental health before the fall), but the delerium has gone, and we were able to share a joke last night, when the nurses thought I was his wife (I am his daughter).
I really hope things improve for your Mum. Waiting for a crisis (this fall was our crisis, before this he refused carers) is awful for all concerned.