Exhausted

[Purple rain 50]

I came across this thread whilst trying to find ways to get my Mum to accept a carer coming into the flat. She really doesn't see that she has care needs. She's not taking medication properly, definitely not eating properly (just having toast most of the time that we're not there) and not washing herself (I had a bath yesterday - she didn't!) or dressing properly. The carer started visiting earlier this week and she basically told them where to go. This morning, she'd bolted the door so that they couldn't use the key we left in the key safe for them. My brother thinks he can have a conversation with Mum and give her the options of no care, care at home or residential care, but she will forget having had that conversation. She's not capable of rational thought any more. My sister and I are spending so much time there. Both of us work full-time. She phones constantly. My sister had 18 missed calls yesterday - Mum saying she's lonely (the first call was only 45 minutes after I'd left her yesterday morning). Over the summer was particularly difficult and my younger sister and I both had burnout and are on anti-depressants and having counselling/awaiting psychotherapy.

We've also come to the realisation that it may take a fall (or similar) for things to change and this being taken out of our hands. Not looking for any answers. Just wanted to off load.

I’ve also just come across this post & all sounds very familiar!
My mum started respite today & it’s been very traumatic (see separate post lol)

I think I’ve tried to convince myself that my mum is different - she’s still pretty with it & that anxiety is her problem but the more posts I read, I know I’m kidding myself!

Im also burnt out - I’ve been spending 10-11 hours a day with mum but that’s stopping when she gets home. I’ll continue working from her house in mornings, make her lunch & then go. Ill try to get her to accept an evening carer but I’ve had it with driving backwards & forwards

Take care of yourself @DaisyFrench & you too @Jakesterblack if you’re still about x

 

[Jakesterblack]

Hello to both of you, I've not been on the forum for a while, hit a bit of a brick wall.. after last social work meeting i just felt so deflated and exhausted, then ended up off work for 6 weeks with stress, not just work, mum, sister being ill, hubbie had to have surgery it all just piled on and i took really bad chest infection it just finished me off tbh however during those 6 weeks i have realised that I have myself and my family to look after and my sister really does need me now and mum... well mum can't remember what has happened mins ago so i've learnt to give myself a bit of slack, i promised Dad when he was i'll i'd look after mum but it's got to the point mum just wants to be in the house all day every day, in and out of bed, not washing not socialising and basically existing and i can't beat myself up about this any more. I still go down but not as much and make sure she has food etc but I can't deal with trying to get her ready to take her out and persuade her to put on clean clothes etc so unfortunately that has stopped. I found it too stressful, taking her to shops she would wander and bump into people and I got so stressed out with it. I don't think people understand until you are in this position and i've lost count of how many people said you have to enforce care.... yep i've tried that and at the moment it's not happening.... we are as a said before basically waiting on mum wandering, falling, setting her house on fire something awful basically before social work will actually help us... It is very had to pull back though and it's taking me a long time and i can sympathise with you both because it is a living nightmare isn't it. I love my mum but she isn't there any more and i've accepted that also. Little by little we notice changes daily/weekly. She hasn't been as abusive with me i've learned that if i go down for short visits take shopping and make sure some chocolate or sweet treat she is more than happy - I even got a hug the other day which i haven't had in a long time. Keep your chin up and day at a time, nothing else for it x

 

[Purple rain 50]

Hello to both of you, I've not been on the forum for a while, hit a bit of a brick wall.. after last social work meeting i just felt so deflated and exhausted, then ended up off work for 6 weeks with stress, not just work, mum, sister being ill, hubbie had to have surgery it all just piled on and i took really bad chest infection it just finished me off tbh however during those 6 weeks i have realised that I have myself and my family to look after and my sister really does need me now and mum... well mum can't remember what has happened mins ago so i've learnt to give myself a bit of slack, i promised Dad when he was i'll i'd look after mum but it's got to the point mum just wants to be in the house all day every day, in and out of bed, not washing not socialising and basically existing and i can't beat myself up about this any more. I still go down but not as much and make sure she has food etc but I can't deal with trying to get her ready to take her out and persuade her to put on clean clothes etc so unfortunately that has stopped. I found it too stressful, taking her to shops she would wander and bump into people and I got so stressed out with it. I don't think people understand until you are in this position and i've lost count of how many people said you have to enforce care.... yep i've tried that and at the moment it's not happening.... we are as a said before basically waiting on mum wandering, falling, setting her house on fire something awful basically before social work will actually help us... It is very had to pull back though and it's taking me a long time and i can sympathise with you both because it is a living nightmare isn't it. I love my mum but she isn't there any more and i've accepted that also. Little by little we notice changes daily/weekly. She hasn't been as abusive with me i've learned that if i go down for short visits take shopping and make sure some chocolate or sweet treat she is more than happy - I even got a hug the other day which i haven't had in a long time. Keep your chin up and day at a time, nothing else for it xM

Aw you have been having a really rough time but I guess on the upside it’s forced you to make the decision to put yourself & your families needs first!

I’ve stopped taking my mum out for lunch at the weekends. We used to do a Sunday lunch but I’ve found I’ve run out of small talk … if I talk about other family members or her friends, she can’t really remember stuff. We tried a garden centre a few weeks ago but she had a massive panic attack when the food arrived & we left in a hurry.

It’s sounds like you’ve got the balance right with your visits now - I’m hoping to do something similar when my mum gets out of prison (sorry, respite 😉) x

 

[Jakesterblack]

Aw you have been having a really rough time but I guess on the upside it’s forced you to make the decision to put yourself & your families needs first!

I’ve stopped taking my mum out for lunch at the weekends. We used to do a Sunday lunch but I’ve found I’ve run out of small talk … if I talk about other family members or her friends, she can’t really remember stuff. We tried a garden centre a few weeks ago but she had a massive panic attack when the food arrived & we left in a hurry.

It’s sounds like you’ve got the balance right with your visits now - I’m hoping to do something similar when my mum gets out of prison (sorry, respite 😉) x

Hi, yes I honestly think we have to look after ourselves too and I just felt I was constantly putting mum first all the time and it did become a strain. I was down last night and she wasn't in good mood, no idea why but was shouting at me and i just left her shopping and went back home, I just don't allow myself to be stressed out any more with it because it doesn't do me any good or my mum.

 

[Jakesterblack]

Not been on here for a bit... had stepped back from mum as she was refusing care/cleaner etc and i ended up off work with stress just with one thing and another... so i did step back but it got to point where i couldn't go into house because of the smell so i took a days holiday yesterday and went down to clean her house and i am horrified to say she has mice now and doesn't seem to be in the least bit bothered by it... I spent 4.5 hours cleaning her bedroom and called a pest control company and tried to explain her to her they are in her room at night while she is sleeping but she just kept saying well i haven't seen any i don't know what you are talking about... i tried to say her house is dirty and the piles of hoarding material is encouraging them in even more. I filled up five bin bags of rubbish had to throw all of her bedding out and buy new stuff and she still doesn't understand. I know I am wasting my time but I'm at the point I just don't know what to do any more. social work not interested and she is refusing to let anyone in now apart from me and my sister who is ill and shouldn't have to be dealing with this . Yesterday when i came home i could have cried - I know my mum has gone but i can't leave her living like this so i'm back to square one i'll have to clean her house. How does this illness affect a person so much that there is just no reasoning on anything whatsoever...

 

[Daisymay1]

I know exactly where you are coming from, and to honest you have to just get her assessed and get the carers in. We had to tell Mam that the dictors had said either that or she went into hospital. She begrudgingly went along, with plenty of tutting and face pulling at the poor carers, but she accepted them eventually.
You wont be fit enough to help your mum and you have to put your own mental health first. Once the carers are in place it may help you to enjoy the visits more.

 

[SeaSwallow]

I am sorry to read about the difficulties you are having @Jakesterblack. I would agree with @Daisymay1 that it would be a good idea to try again with the carers and also a cleaner. I know that it is hard but hopefully she will accept them in time.
Regarding the social worker, have they indicted why they are not interested. I think that it would be a good idea to contact them again to let them know about your mum’s situation. Tell them that she is a ‘vulnerable adult at risk of harm’ due to the dirty state of the house. Follow up any discussion with an email to create a paper trail. Also explain that due to your own stress levels you cannot supply the level of support that you did in the past.

 

[MatthewB]

It is so sad to read bout all your troubles to look after dementia ones. I'm take care of my own self good but I'm get lost in the town or country sometimes and I'm fall down so many and I know my family is very nervous. I think it almost is time to die and then I won't cause this problems to my people like you poor folks God bless you all I can't rob my dear Lisa and kids of their life.

 

[sdmhred]

Oh @MatthewB please please don’t think you have to die so Lisa and the kids can move on with life.

Although it is tiring at times I have found it a privilege and joy to care for my mum - I don’t regret a single day. I have been enriched by the experience.

Much of our frustration on this site is with the UK care system where carers don’t get the help they need. Most want to care but have the support around them so they can also have some relaxing time.

Do talk to your Lisa about how you’re feeling. It sounds like you have a lovely wife and kids.

 

[MatthewB]

Oh @MatthewB please please don’t think you have to die so Lisa and the kids can move on with life.

Although it is tiring at times I have found it a privilege and joy to care for my mum - I don’t regret a single day. I have been enriched by the experience.

Much of our frustration on this site is with the UK care system where carers don’t get the help they need. Most want to care but have the support around them so they can also have some relaxing time.

Do talk to your Lisa about how you’re feeling. It sounds like you have a lovely wife and kids.

They are the best my family so kind I can't stand to leave them but I can't stand to make them life so bad and is so bad hard to know what to do if said this to my Lisa she will say no way

 

[sdmhred]

Do you know you are making their life bad @MatthewB ….or is that your worry?

I am sure they worry about you - but loving families worry about each other even without dementia.

Do you have an organisation called the Samaritans in the US? We have them here and you can call them for a confidential chat when life is feeling too much. They will understand.

 

[leny connery]

Hi, Ye i have got to that point with mum but i just feel awful that it's came to this stage and having to force care on her I know it's the best for all of us I just can't help but feel guilty ...

Guilt is a destructive thing, really. It is felt by all of us carers. But, there is a time when you must harden yourself. If cleaner or carer are refused then residential care. It cannot go on when you and your sis can't..Good luck. Do not end up harming yourselves trying

 

[MatthewB]

Do you know you are making their life bad @MatthewB ….or is that your worry?

I am sure they worry about you - but loving families worry about each other even without dementia.

Do you have an organisation called the Samaritans in the US? We have them here and you can call them for a confidential chat when life is feeling too much. They will understand.

I don't think I am yet but all these poor people it got that way and I'm scare I will get that way and not know it and give me bad nightmares

 

[canary]

I don't think I am yet but all these poor people it got that way and I'm scare I will get that way and not know it and give me bad nightmares

Oh matthew, Im so sorry you feel like that
I dont want you to become scared about something that may never happen
Would it be better to not read these threads?

 

[upsanddownsdays]

Not been on here for a bit... had stepped back from mum as she was refusing care/cleaner etc and i ended up off work with stress just with one thing and another... so i did step back but it got to point where i couldn't go into house because of the smell so i took a days holiday yesterday and went down to clean her house and i am horrified to say she has mice now and doesn't seem to be in the least bit bothered by it... I spent 4.5 hours cleaning her bedroom and called a pest control company and tried to explain her to her they are in her room at night while she is sleeping but she just kept saying well i haven't seen any i don't know what you are talking about... i tried to say her house is dirty and the piles of hoarding material is encouraging them in even more. I filled up five bin bags of rubbish had to throw all of her bedding out and buy new stuff and she still doesn't understand. I know I am wasting my time but I'm at the point I just don't know what to do any more. social work not interested and she is refusing to let anyone in now apart from me and my sister who is ill and shouldn't have to be dealing with this . Yesterday when i came home i could have cried - I know my mum has gone but i can't leave her living like this so i'm back to square one i'll have to clean her house. How does this illness affect a person so much that there is just no reasoning on anything whatsoever...

Hi , I've just read your post and I could've written so much it it .my mum was resisting all help , I was on my own doing the care and it was making me ill. Mum caught covid and gave it to me and my family . We were quite poorly but I still dragged myself out of bed and went to cook her dinner and do whatever she needed . She refused help to shower and wouldn't let me even change her bedding . I was shouted at and thrown out the house . So it came to a crisis , she got utis and delirium and had a fall and hit her head . I'm not a nurse and I have no medical training and felt completely out of my depth . So my mum went into care , I realised enough was enough .it was making me and my family ill. Now she's happy on most days and not so happy on others . But i can sleep at night knowing she's watched over , warm and fed . I think that's all you can wish for at this stage . I hope you sort it out for all your sakes . X

 

[Louise7]

Hello @MatthewB I'm sorry too that you are feeling so sad today, I hope that you will let your Lisa know how you are feeling. There is a dementia support service in the USA which you can call anytime, for free, for support - see link below - so you could give them a call if you would like to talk to someone about how sad you are feeling, or maybe you could give Lisa the details?

Helpline

Get information and resources for Alzheimer's and other dementias from the Alzheimer's Association.

www.alz.org

 

[MatthewB]

Hello @MatthewB I'm sorry too that you are feeling so sad today, I hope that you will let your Lisa know how you are feeling. There is a dementia support service in the USA which you can call anytime, for free, for support - see link below - so you could give them a call if you would like to talk to someone about how sad you are feeling, or maybe you could give Lisa the details?

Helpline

Get information and resources for Alzheimer's and other dementias from the Alzheimer's Association.

www.alz.org

I'm thank you very much I show my Lisa and she want to call them with me too and we are grateful

 

[MatthewB]

Oh matthew, Im so sorry you feel like that
I dont want you to become scared about something that may never happen
Would it be better to not read these threads?

That's what my Lisa say to not read those ones she know someway I was being scared and she don't want me to do that no more said that one won't happen to us. She saying I'm too sweet to ever be mean she think that because she loves me so many years

 

[canary]

That's what my Lisa say to not read those ones she know someway I was being scared and she don't want me to do that no more said that one won't happen to us. She saying I'm too sweet to ever be mean she think that because she loves me so many years

I dont think its just because she loves you, Matthew. I can tell from your posts that you are a very sweet and caring man.

 

[MatthewB]

I dont think its just because she loves you, Matthew. I can tell from your posts that you are a very sweet and caring man.

I'm think you guys are the sweet ones to be nice so much even when I'm whiney thank the Lord I'm hope he bless you so good