New to forum… at my wits end

[Emma_220512]

Hi all

Never posted about this before but have felt some relief in reading others predicaments.
I’m 38, the youngest of five siblings (all of which live locally) and care for my 78 year old mother with COPD.
My father passed away suddenly in 2019 after which my mums COPD got steadily worse to a point where she doesn’t go out, can’t do anything around the house and can barely make it to the bathroom without struggling to breathe and can’t be left alone.
I moved in with her after my father passed and get barely any support from my siblings. It feels like I have to beg them to sit with her while I go to my part time job, 4 hours, 3 days a week. This is the only time I get out the house.
It’s 24 hours a day, I have my own health problems: two slipped discs in my lower back so am in constant pain and find physical tasks demanding anyway. I haven’t had a whole nights sleep in nearly 3 years without having to get up and support her.
Don’t get me wrong, I love my mum and would do anything for her but just feel like my life is on hold, I can’t move in with my partner (whose really supportive and he helps me when he can) go on holiday or even pop to the shop as she needs someone there in case her breathing is compromised.
Whenever I ask my siblings for help, or to cover mum sitting so I can go out it’s just met with excuses. It’s just not fair that they have their lives and I don’t.
I wouldn’t dream of putting mum in residential care but I think I’ve reached my limit, physically & mentally.
Don’t know what I’m expecting by posting this but just feels good getting it off my chest

[sunnydisposition]

Hello and welcome Emma

It's time to stop and expected your siblings to help. There is always one family member where things are left to them. Your Mum requires to needs assessment and your a carer assessment from Social services. Make this a priority and if Mum doesn't want you can have one independently. And this can be carried out away from home if you would like.

There is always a solution it's taking the bull by the horns. Does your Mum have an alarm pendent. If not get one from social services.

I love my mum and would do anything for her but just feel like my life is on hold

Correct and nothing will change unless you change it. The more you take on the less other will do. As there every been a time when you have had to come home from work in an emergency for your Mum. Many people live on there own with this condition and learn to manage their care. I know several who live alone also on oxygen and go out independently. A couple use a mobility scooter for shopping socialising and even to the bingo venue.

[Emma_220512]

Thanks for your reply, nice to know somebody is listening and taking the time out to even reply.
I agree with everything you say, I even say it to myself at times but hard to actually follow through.
Yes, have been called away from work and sometimes not been able to go in. Luckily my boss is really understanding of my situation.
Do I apply for the assessments through my GP?
How do the alarm pendants work? Does someone come to her aid when pressed?

Thank you so much for your advice

[sunnydisposition]

https://www.carersuk.org/help-and-advic ... assessment

https://www.carersuk.org/help-and-advic ... assessment

Try the council first ...

https://www.ageuk.org.uk/products/mobil ... al-alarms/

Different systems different packages.

Yes some are linked to family member but some offer warden call assistance.

Mum could also have a respite package which would be discuss at the needs assessment meeting. Mum could also have a carer stay in her home while you had a break. Needs assessment get this rolling.

https://www.carersuk.org/help-and-advice

https://www.citizensadvice.org.uk/famil ... nd-support

There is loads of help you just need to make contact.

[Emma_220512]

Thank you so much for your help. Have already applied online for a carers assessment.

Thanks again

[sunnydisposition]

Please come back if you need any other help or information or just a chat.

There are very knowledgeable people on this forum and can answer most questions or signpost you.

[Breezey]

Hi Emma

You have made the first step by posting in here and getting info.

Does your mother have a district nurse calling in? I think she/he could order a commode for your mother. If you don't have a nurse calling in, ask at your surgery for the district nurse to come and then ask about a commode and a hospital style bed that can prop her up in the night to help her breathing.

Does your mother have COPD reviews from her GP? Is she due/overdue another to gauge the severity?

If your mother hasn't been reviewed for over a year ask for her to be reviewed for her chest, medications, inhalers, nebuliser, oxygen and perhaps her heart too because it will be under strain.
She warrants home visit because she cannot get there.

My mother was COPD reviewed at home by her GP last September and has deteriorated but oxygen levels are good and she doesn't warrant oxygen.

There could be a few charity sitting services that will do a couple of hours a week/fortnight so you can pop out, however they do not do medical interventions, they just sit and chat or make a coffee, they might be allowed to remind to take tablets but generally they are there as company and will have to alert you to return home in case of emergency. you could offer to sit with them for the first session so they know if it is manageable and the signs to call you back. Also you cannot guarantee she will be well enough on that day to leave her.

I have a plug in doorbell for my mother to alert me if she needs me during the night or when I busy in the daytime.

You will always have the fact that you did this for your mother but if the point comes that she needs nursing home care because you are unable to give all the care she needs then that is a fact of life and you have done your utmost for her while you could. That is time and effort they cannot buy back.

[Breezey]

Hi Emma

You have made the first step by posting in here and getting info.

Give them the shock of their lives - book a holiday, even if it is just a weekend or long weekend.

Does your mother have a district nurse calling in? I think she/he could order a commode for your mother. If you don't have a nurse calling in, ask at your surgery for the district nurse to come and then ask about a commode, walking frame for indoors and a seat one for outside and a hospital style bed that can prop her up in the night to help her breathing. If your mother would benefit from tena pads these can be arranged via the district nurse who will send on her details and you will get set up for ordering them. Well in my local authority this happens, you can but try in yours.

Does your mother have COPD reviews from her GP? Is she due/overdue another to gauge the severity?

If your mother hasn't been reviewed for over a year ask for her to be reviewed for her chest, medications, inhalers, nebuliser, oxygen, listen to her chest and perhaps her heart too because it will be under strain.
She warrants home visit because she cannot get there.

My mother was COPD reviewed at home by her GP last September and has deteriorated but oxygen levels are good and she doesn't warrant oxygen.

There could be a few charity sitting services that will do a couple of hours a week/fortnight so you can pop out, however they do not do medical interventions, they just sit and chat or make a coffee, they might be allowed to remind to take tablets but generally they are there as company and will have to alert you to return home in case of emergency. you could offer to sit with them for the first session so they know if it is manageable and the signs to call you back. Also you cannot guarantee she will be well enough on that day to leave her.

I have a plug in doorbell for my mother to alert me if she needs me during the night or when I busy in the daytime.

You will always have the fact that you did this for your mother but if the point comes that she needs nursing home care because you are unable to give all the care she needs then that is a fact of life and you have done your utmost for her while you could. That is time and effort they cannot buy back.
if your mother owns the house make your siblings aware that the house will be sold to pay for her care if you can't manage and she has to go into a home.

[bowlingbun]

You are the family "Sacrificial Lamb", as I was!
My brothers saw mum on average once a year whilst I did lots, and cared for my son with severe learning difficulties, ran a business and a national club!
Both were only interested in their share of mum's house, but mum changed her will, I got half and they got a quarter each. One sent a threatening solicitors letter to me, and never contacted me again. I don't even have a current address.
You should never have moved in with mum, I'm sure you realise that now.
You have to focus on what mum NEEDS, not wants. Residential care, staff on duty 24/7 is probably inevitable at some stage.
If you want love, happiness, babies, a home of your own, you are going to have to start putting yourself first. After all, that's what family and mum are doing.
What are you doing for money?
Does mum get Attendance Allowance?
Own her home, or rent it?
Have over £23,000 in savings?

What to do next depends on your answers.
A friend cared for his mum until she died at 104.
I developed a life threatening condition, and major surgery.
My husband died from a massive heart attack at 58, I'll always believe the stress of caring was a major factor, his parents were Ill for years.

If you don't put yourself first, no one else will!

[sunnydisposition]

Emma I forgot to mention is the key safe fitted to the property. If not this would be very useful particularly when you are at work.

Some Age UK locations fit them check your local area one.