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My parents' emergencies are making me feel so out of control - Carers UK Forum

My parents' emergencies are making me feel so out of control

Tell us a bit about yourself here.
I am not a full time carer but a carer's back up. My mum (80) is the carer and my dad is disabled and has some memory loss (not being acknowledged)

In the last two months they have had three emergency trips to A and E, two of those being my mum, so I got 'the phone call' to go across immediately and spent each of those days trying to be there for mum as well as manage my disabled dad in a wheelchair around the hospital. The last visit took a total of 15 Hours and I have spent the following days exhausted and stressed.

My parents have been advised to have hospital bags ready but they were not ready on either occasion so this was an ordeal too, trying to help my disabled and confused dad find stuff quickly.

I have also had other calls to help with stuff. I am a single mum, home educating, with a daughter with undiagnosed special needs.

I am beginning to feel very out of control and scared of the next phone call when I will be expected to drop everything.

I need to know where I can access services in an emergency so that I am not sole carer on call 24/7 as I cannot cope with the stress of this. My brother is not in the country. My grown up kids all work and I will be working within a few months to support my family and less available.

Any suggestions, support, sympathy welcome!
Hi Linda,
My husband and I nicknamed ourselves "The Thunderbirds", ready to jump at a moment's notice. His parents 4 miles in one direction, mine just a bit further in the opposite direction. Between them we had Alzheimers, two heart failures, two arthritis, bowel cancer, prostate cancer. The worst, my mum, had 28 different health problems, who died last year. They kept telling officials they were fine, then would ring us in a panic almost immediately afterwards. We ran our own business and a national club, and had a son with severe learning difficulties!!!
Sadly, my husband had a sudden heart attack and died in his sleep at the age of 58, I developed a life threatening illness, had major surgery, and nearly died. By this time three parents had died, but mum then had a bad fall and spent months in hospital. Huge pressure was placed on me to resume caring, but I finally put my foot down and refused to care for mum any more.
Parents will always expect their children to do things for them, but not everyone has a child handy, and they survive and services are arranged for them. (We came to the sad conclusion that we lived too near to our parents).
Counselling was arranged for me, dealing specifically with the demands my mum was making on me. At the age of 60 I finally realised that it was OK to say "No" to mum, and to generally manage her demands. The counsellor taught me to set clear priorities. Son first, especially as he cannot speak up for himself. I told mum this in a roundabout way. She didn't like not being top of my priority list, but had to admit that it was right.
Mum had a Lifeline, so she could always call for help (and it was used a number of times). Because of her medical condition, and mine, the Lifeline was instructed to call an ambulance if she fell, then call me. Sometimes, I couldn't go over to her house (I seldom drink, but on New Year's Eve my sons and I had a special meal and I couldn't go over as I'd be over the limit. Even then the agency carer tried to bully me into going!!)
Make arrangements for your parents to have some help other than you. Ask Social Services for a Needs Assessment for dad, mum should have a Carers Assessment with a back up plan in case she is ill, and you too should have a Carers Assessment. If they have a lot of savings they will have to contribute. If not, then make it clear to them that you simply cannot fill in the gaps. Your work and your daughter have to take priority.
Can I ask what the emergency visits to hospital were for, and why dad had to go and why you had to push the wheelchair? Then I can give you a few ideas. How old is your daughter? What is happening about a diagnosis?
When I had problems with my son's education I found IPSEA. Google them for information. They were incredibly helpful and supportive.
Thank you so much. So sorry to hear about your health issues and close people you have lost. What a time you've had. Isn't it amazing how people expect you to care for others when you are struggling yourself.

My problems are not so severe that I cannot give any help but I totally agree that
...I need to put limits on what I will do.
...there needs to be other support in place so I am not sole carer if mum is ill.
...I shouldn't have to live in constant stress so that others can feel better.

Thank you.
I'll echo what BB says, and add the following:

- If your parents won't pack their emergency hospital bags, I would suggest that YOU do so for them (even if it means buying an extra set of things like toiletres and nightgowns and underwear etc etc), and then put the two small bags safely in a spare room, or the garage, or somewhere like that (where they can't unpack them again!)(or even keep them yourself may be?)

- can your disabled dad be left on his own at all, and if so, for how long? I ask because IF your mum needs to be in hospital again, it's daft to lug your dad with you (EVEN IF HE WANTS TO COME!). But that will mean leaving him back at home, on his own, if you are in A&E with your mum.

-if your parents are reluctant to accept 'outsiders' in (SO many elderly people do NOT want carers in, sigh), then the following ploys have been suggested frequently on this forum!

eg, get them a cleaner first. A cleaner is not a carer, so it's psychologically different. If they are reluctant (and your mum is 'soldiering on' etc etc), say it's for YOUR peace of mind, you don't want your mum slaving away any more at her age, and maybe give them the carer for Christmas - this is your present from me, mum (can you afford to of course?) (Or maybe, you pay the carer for three months, something like that - once your mum is 'hooked' on having her house cleaned for her, she should be willing to pay for them herself!).

But having a cleaner come in (I'm assuming they don't already??) firstly establishes the principle of 'other people' coming into the house to help, and also provides 'a third eye'. For example, my friend with her elderly dad with moderate dementia (but very 'housetrained' so to speak) always uses the time her cleaner comes to nip out herself and take a break - it's all 'squared' with the cleaner. She knows that IF her dad falls down stairs (or whatever!) there is someone in the house to call 999 etc.

- if your parents won't accept care workers coming in, can you try the following. Book a careworker, but YOU be there at the same time. Stay with your parents the whole visit, working WITH the careworker to make tea or whatever it is. Then the next time, also be there, but say 'Mum/Dad, I'm just going to clean the bathroom or whatever' and be out of the room, but in the house. Then the third time you are also there but say 'I'm just off to post a letter' or whatever, and be out of the hosue for twenty minutes etc etc. The idea is to 'wean' your parents onto the care worker, and come to know and trust them. Several forum members say that their parents really enjoyed the care workers visits because it was company, and chatty, as well as a help, etcetc, so hopefully that may happen with your parents too.

At some point, however, you do need the Big Conversation with your family, about What Will Happen To Mum and Dad. They may be able to 'soldier on' with outside help and support for a while longer, maybe even a few years, but you do need to think through the future scenarios. How will their health worsen, and what will be the living impolications for that. Which one is likely to die sooner. (Sadly, it's usually the 'easier' parent who dies first....I've seen that happen time and time again, and it happened with my own family as well!)

The most important change though is inside your head. As they age, your parents will become 'the children' and you will become 'the parent'. That is almost inevitable alas....

kind regards, at a tricky time, Jenny