why don't people understand a carer can b... - PSP Association

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why don't people understand a carer can be tired?

Cinderella80 profile image
20 Replies

Hi friends just had another dreaded day. Not because of my mum who has PSP.My mother is everything to me it is hard looking after her on my own 24/7 I will admit that. But what makes it more difficult and so unbearing is getting verbal abuse from my brother on behalf of his wife. Unfortunately we all live in the same house with mum. In the mornings I dread getting up because I don't know what nasty comments will come out of my brothers mouth. The funny thing is they have made me the bad guy. Like today I was up with mum early so I put mum in the wheelchair and took her with me at the front of the house to clean the windows then I washed the nets, cooked cleaned fed mum etc. All the while my brother and his wife are upstairs in their room. I was nonstop looking after mum and taking care of chores all day and lo and behold if I mention that I'm tired I get verbal abuse and they say I'm the one who makes it hard for them to help with anything. How can anyone not see what I'm doing 24/7 and not understand that I'm human and can get tired. It's like they want me to be seen and not heard as long that don't have to get their hands dirty. Now they have gone to eat out and didn't even think about me. I dread getting up every morning but I get up to take care of my mum because I love her so very much. Sorry for the moan but it's been a long day and have no one to talk to. I wish my dad was still alive he passed away nearly three years ago and would not let him speak to me like that. Now I have no one. Sorry again. Sorry for the moan.

20 Replies
Helen119 profile image
Helen119

Blesss you xx hugs xx

Cinderella80 profile image
Cinderella80 in reply to Helen119

Thankyou!

Laurel1995 profile image
Laurel1995

I understand….. but others don’t. If it’s not their responsibility, out of sight out of mind. That’s how I feel. Prayers and hugs to you! ♥️

Cinderella80 profile image
Cinderella80 in reply to Laurel1995

Thanks for understanding! I don't understand why people can be so selfish and uncaring especially if it's your own brother. Thanks for you prayers and hugs I really need them right now. 🌹

NannaB profile image
NannaB

It is so hard looking after someone with PSP on your own and you have to look after yourself as well. What do you think your brother means when he says you are the one who makes it hard for them to help? What is he thinking? Did you ask him? You need a break or the situation will break you and you won’t be any help to your mother. It must be heartbreaking for her to have to listen to the conversations you have with your brother. My husband understood everything he heard right until the end. Why not arrange time out yourself when you know your brother & his wife aren’t working. They may see how well you care for your mum and feel inadequate when you are there to watch them. Leave the house and take your phone so they can contact you if they have to. I don’t know your brother and he may be totally useless & uncaring but when I nursed my husband, after 2 years of struggling alone I realised I was burning out, swallowed my pride and asked for help, a few hours out each week. I got that help from friends, Crossroads, the Hospice and my family & church community. A few hours away a week gave me something to talk about to my husband. I knew I wasn’t helping him when I was miserable or resentful. We loved each other dearly and I explained I needed time to myself to recharge and he understood. I do hope you get a break. Give your brother and his wife a chance to show if they are capable of caring. If they aren’t there is other help out there. Unfortunately we don’t have fairy godmothers to rescue us and we won’t get help unless we ask for it and trust others when we aren’t there.

Very best wishes.

XxxX

LuisRodicioRodicio profile image
LuisRodicioRodicio in reply to NannaB

👍

Cinderella80 profile image
Cinderella80 in reply to NannaB

Thanks for responding I really appreciate it. What my brother means I make it hard for them to help is that he says that I am always tired and in no mood for small talk. He wants me to entertain his wife which I don't have time for. I don't even have time to myself the little slots of time I have is taking a quick break and just sitting in peace. Which is not good enough for them. They don't seem to understand how exhausting it is for me. Juggling house chores and taking care of mum. It just saddens me that everything is in front of them yet they don't understand.

NannaB profile image
NannaB in reply to Cinderella80

It is hard I know. As others have said, leave some of the chores. Who cooks the meals for you all? If you do, ask them to do it at least some time every week. Who clears up afterwards? Leave it for them. Close your eyes to some of the things that need doing other than for your mum. Your brother may be some who doesn’t think of doing things unless you ask. Ask your brothers partner to help you make the bed, put duvet covers on etc and chat to her while you do it. Do you have any friends? Go out in the evenings sometime and leave mum with them even if you go alone and just sit in the car or park on these nice summer evenings. Unfortunately things will never change if you don’t change things. You are doing a brilliant job with your mum but who would do it if you weren’t there? I ended up having to put my darling husband in a home for 2 weeks as I hurt my back. This was before I had any help but things suddenly changed and I realised I was not indispensable. It was heart breaking having to do it but when he returned, that was when I contacted the hospice and Crossroads. Even friends came & sat with him so I could go out, mobile phone at the ready of course. They helped in many different ways. I thought I was the only one who could look after him but found out the hard way that I wasn’t. You will still be the main carer but burn out can happen, physically but also mentally. Please don’t wait for it to happen as you may have many more years of this to come. Sending a big hug.

XxxX

David750 profile image
David750

Very good advice from NannaB. I would add that you set up a meeting with your Social Worker, your brother, his wife and your self. Advise the Social Worker of the situation in advance. Social workers are the 'centre' for accessing all forms of assistance. I valued the advice of my SW, when looking after my wife (PSP).

Cinderella80 profile image
Cinderella80 in reply to David750

Thank you for taking the time out to respond much appreciated.

SewBears profile image
SewBears

Hello,

It sounds like you’re taking on responsibility for everyone else and you that you could really use a break. What if you were to write a list of everything that you do and ask your brother and his wife which chores they could help out with? He says he wants to help, put him to the test. If your brother and his wife ignore the list and don’t actually help then maybe they’ll stop with the nasty comments. It’s sad that you dread getting up everyday. Especially when you want to spend quality time with your mum who needs you. Try to take it easier on yourself. The house isn’t going to crumble if the windows don’t sparkle. Just do the bare minimum of housework because in the end what is important is your health and the ones that you care for. Be kind to yourself. Google How to let go of chores or housework and you’ll be amazed to find so many articles about this topic. You aren’t alone.

Take care of you!

Cinderella80 profile image
Cinderella80 in reply to SewBears

Thank you for your kind words. Unfortunately they are the type of people even if the kitchen bin was overflowing they would not use the common sense to empty it out. That's why I run around like a headless chicken sorting the house out and looking after mum. But I appreciate what you say in letting house chores go.🌷

HilsandR profile image
HilsandR

Hi Cinderella

I rarely visit the forum these days but I did read your latest post, and a couple of things jumped out of the page and took my attention, so much so that I read your past posts just to get a sense of your story.

I can see that you are totally devoted to caring for your mum and you should be proud of yourself; PSP is a hideous, progressive illness, and when it’s all over you wonder how the heck you ever managed to find the reserves to survive. I’m not going to comment on the issues with your brother and his girlfriend, but will just pick up on a couple of your comments, please don’t interpret as a criticism, it’s meant to be constructive.

Firstly, you quoted your brother said “you make it difficult for us to help.” Do you think it’s possible that you don’t ask for help without realising it? Many carers feel they have to go it alone for all sorts of reasons; pride, needing to be in control, not wanting to appear weak, they are the best person to care for their loved one. I wonder why you didn’t react to your brother’s words by saying you didn’t realise you were making it difficult and offered up some suggestions of how he could help. I get it, of course, that he may have just been paying lip service to his comment and actually would have run back to his room had you suggested some tasks.

Secondly, the getting up early to clean windows and wash curtains! I get it that you want to keep your home looking lovely but when you are caring for someone 24 hours a day you have to prioritise the most important things, and windows come way down the list - you are not superhuman. I assume your mum is getting Attendance Allowance, if not you should apply for that on her behalf asap because it’s an entitlement that’s not means tested. You could use some of that money to get a window cleaner every couple of months. Free yourself up from some of the less important jobs and in that time take your mum out in the wheelchair, sit and relax in a green space somewhere, you can both enjoy that.

I know that you’ve had a lot of very good advice from the folks on the forum all of whom are living through or have lived through the challenges of this horrible illness, so their advice is usually spot on! I realise that depending on where you live that support isn’t always readily available but you do have to keep pushing and pushing. Once again, if you are unable to get support through the various services, you could use Attendance Allowance to pay for someone to come and sit with your mum even if just for a couple of hours a couple of times a month so that you can get out for a bit of time to yourself.

I’m sorry that I don’t have all the answers and my response is in no way a criticism of your devotion to your mum, but please, please, do what you need to do to take care of yourself and forget about the jobs that should remain way down the list and spend that time making more happy memories with your mum because one day you will be so glad that you did.

Very best wishes,

Hils

x

Cinderella80 profile image
Cinderella80 in reply to HilsandR

Thankyou so much for responding. I am so grateful that you understand how much I love my mum. My mum used to be house proud and kept it in tip top condition. I just try to keep everything how it was when mum used to do it to make her feel like everything is the same. I am not too bothered if they don't want to help even though they live in the same house. But what hurts me most is that they don't understand if I am tired or exhausted. There is no comprehension there. Instead they verbally abuse me when I am. My brother used to be more understanding before marriage. But I am always with mum she can't do much as she is always tired too. But we get to watch a bit of telly in the evenings before bed. And she gets to eat some chocolate buttons!

HilsandR profile image
HilsandR in reply to Cinderella80

Well that sets a lovely scene, you and mum watching a bit of telly together and mum enjoying chocolate buttons - a perfect end to your busy day.

I will say one more thing, when this is over, all the unconditional care you gave your mum will leave you guilt free, though we all feel some guilt thinking we could have done more when of course we couldn’t. Guilt will come back to haunt your brother for sure but then it will be too late for him to turn back the pages.

I’ll think of your mum this evening enjoying her choc buttons - I hope they are Cadbury’s Giant buttons. I keep some in the house for my little granddaughter but often end up eating them myself and having to replace before she visits.

Take care of yourself and do whatever you need to do to make life a little easier for you We all understand the journey is a long and winding, often very bumpy road.

Hils

Atomic55 profile image
Atomic55

Goodness me you really are there in the weight of this. I suspect your brother and friend are perhaps feeling guilty and that can come out as anger. They may also be feeling the loss. It does not excuse what they’ve been doing.

I think we all experience a misunderstanding about how intense being a carer is. Just a simple example couple of days ago when my brother called me at about 2 o’clock in the afternoon and I told him that I was just finishing my breakfast and he laughed.

That there is an example of where people don’t understand. They don’t understand that we get up at God knows what o’clock get to bed God knows what o’clock exhausted and when we get up it all starts again the washing the cleaning changing the pants changing the bed getting the breakfast having a shower and then finally having five minutes to ourselves before the next load of jobs.

It is mostly thankless, often misunderstood, it’s something that we need to raise awareness of.

Why not have a carers union? Need to join forces in order to force statutory authorities and the government to take us more seriously.

In the meantime, as you’ve already said we do this because of love not reward But good quality help go along way to giving us a break now and then recharging your batteries.

Cinderella80 profile image
Cinderella80

Thanks for responding. What hurts me most is they live in the same house they can see everything yet still don't understand how exhausting it can be. Ignorance is bliss.

Motts profile image
Motts in reply to Cinderella80

Treasure the time with your mom... & try your best to ignore the self-centered individuals. I have a few in my family too... unfortunately we cannot change them (thankfully l don't live with them). Keep up the good work of loving & caring for your mom AND take care of yourself whenever possible. Sending hugs... Granni B

Cinderella80 profile image
Cinderella80 in reply to Motts

Thank you so much for taking the time to respond. Thank you for understanding. It's sad to know there are horrible people out there especially when they see everything day to day. Sending hugs to you too! 🌷

messier profile image
messier

There are lots of wise suggestions from friends here. My other suggestion is that you ask any friends of you or your mother, or wider family to come over to help you with some tasks. Choose something fairly simple that your brother and his wife should be able to do. If your brother can see you letting go of things and that other people can do a job well enough then they may not feel so defensive. It sounds to me like it is indeed hard for them to feel able to help because they are not up to your and your mum’s standards. Because someone else has done the tasks perhaps you and the friend could sit with your brother and his wife for a few minutes conversation (ask the friend to help with making the tea - don’t run off to do it yourself!). I hope that idea makes sense.

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