As carers, many of us have been here. Some of us know we’re on our own with caring from the beginning, and others have been promised help from friends and family, who say they’ll be there for us, whatever we need, so we can work/have breaks/spend time with our other family members.
Siblings are often very good at promising to help, and also offering to be the financial POA as we are the carers – because that’s only fair – right?
No – it’s wrong.
They often withhold money because they think the 24/7 carers are skimming….or make you justify every single penny, which we have to do anyway, as it’s not our money, but having to prove it to a sibling who thinks a few hundred pounds a month is too much to pay over, is demeaning, and often gets them money hungry for the future.
I don’t want to scare people, as this situation does sometimes work out, but for the majority of people, it simply does not. We often find ourselves left alone with the caring, and if we move in with our family members who have dementia, or they move in with us, the offers to help will usually dissipate.
Family may go all gung ho at the beginning, arriving to help out, and visiting often, then the gaps between help get larger and larger and larger. Before you know it, you might have gone a month and nobody has stopped in by.
You may even begin to hear comments like:
- What do you do all day?
- It’s not like ‘real,’ work, is it?
- Oh, I know what you’re going through. My boss’s daughter’s mother in law had dementia.
- You’re spending too much money, what does it go on?
- You shouldn’t be charging for rent.
- It was your choice, so quit whining about it.
Giving POA to a family member who is not doing the caring is a smart move for that family member, but a silly one for the person who takes on the majority of care.
Lets take this in context for a 24/7 carer..
What do you do all day?
List it for them. My mum is currently late stages. She lives with me. Make your own day and give it to anyone who asks you this. This is my quick version for my days. Remember, this is all day, every day. There are no weekends or holidays. No matter how sick, we have to get up and get going. I’ve been at the cooker making food with a 40 raging temperature and a vomit bucket on the floor – just in case.
Before I can do anything, she has to have her blood sugar checked, insulin given, meds given with puree to get them down, some breakfast and coffee (which takes 1/2 hour alone), her catheter bag emptied and disposed of, she has to be manhandled manually and rolled several times to allow for a bed pad and nappy change, along with removing any soiled sheets and bedding, and washing those. She then has to be washed and dressed, teeth brushed and hair sorted, and then it’s put the bedding into the washing machine for later in the day. Her floor will likely need cleaned, because you know, poop…. After all that, I have then to get myself ready for the day and get the kids moving for school, before I can think about working from home, which I do in-between other duties.
So, I’ve done a two to three hour shift before they even get out of bed…. I sneak in half an hour paid work to pay my bills if possible.
Hoist mum into the wheelchair, which also involved manual handling and rolling a ten stone person several times to get jackets/slings and more on. Don’t forget the fluid top up and diabetic check and the potential next nappy change, again involving a lot of manual handing and angst. After that, it’s out in the wheelchair to keep her active, so around a half mile heavy push each way to get her to the coffee shop where she has coffee and a snack. I get coffee too, but the hour we’re there, I have to hold her coffee cup while she drinks, and sort out her snack, and help her eat it. No break there.
On return from the coffee shop visit, we then move onto dinner, which takes about half an hour for her to finish a bowl of soup. Yes, you are there holding the bowl, helping her guide the spoon to mouth, and cleaning up any mess. Ok, back to the next job of nappy check, emptying the now filling up catheter day bag and cleaning up dinner mess. By then, we’re ready to hoist her back into bed for a nap, before taking the clothes out of the washing machine and getting them out to dry, and maybe adding a new load if she’s had an accident at the post lunch nappy check. We’re at 2pm, I’ve done half an hour of paying work if I’m lucky and my kids breakfast dishes are still sitting at the side of the sink.
Maybe sneak another hour of work or blogging, or if the washing is piled high, some chores instead. Kitchen quickly sorted, and head to the shop for whatever I’m out of, and that list for mum is large. There are medicines to get, nappies, bed pads, baby wipes, barrier creams for bums, catheter supplies, bleach, disinfectants, washing powder and fabric conditioner to fill a bath tub, bicarbonate of soda by the gallon to soak out soiled bedding or clothes, baby food, endless bottles of milk and yoghurts and soups, treats, shampoos, protective gloves and remember each nappy change takes up to half an hour….often needing two people.
She’s awake after her nap and bored. TV means nothing to her, so it’s up to us. Her toes or fingernails might need cleaning and cut. Her skin needs soaked daily and flaky skin removed on feet, her dressings on ingrowing toenails will need changed, she’ll likely need the catheter bag emptied again, and the endless pushing of fluids to keep her hydrated. If the chiropodist or hairdresser is coming, I aim for this time, but then there are the hospital appointments for her diabetes, scans and continuous needs. I have to fit in picking up the kids from school, checking she’s safe constantly on the camera, finding time somehow to do the regular food shop…
Gah, it’s supper time. Diabetic check and insulin to do again. Meals to prep and make for the whole family, with different meals for mum, as she needs puree or soft diet, dishes to do, mum to feed, which takes up to an hour, and then onto the nappy check and change, get her up for an hour, with all that rolling and moving, and keep the coffee coming. Haven’t done one iota of housework other than the kitchen, and almost nothing of paying work, let alone spending time with the kids.
Mum is back in bed, comfy and TV on for a while. I can catch up with some housework, talk to the kids for a while, do mum taxi duty for one child, and sometimes catch up with the news while I have a seat for an hour or so.
Taxi service for child number 2. Refeeding the teens, then coffee and snack for mum, along with her meds, which need crushing and taken, fluid intake, diabetic check, then the bowel routine of a whole clothes change and clean. Back usually aching by this time.
Usually another bowel movement. She’s nothing if not frequent and regular. The manual handing once again and hopefully it’s the last time. Push fluids, set up catheter night bags and put out the bins, doing some laundry for the rest of the family and saying goodnight to mum..
Decide whether I am fit and able enough to try and do some paying work, or look for work, or get some sleep. In a few hours, it all starts again – every single day…….
It’s not like ‘real,’ work, is it?
Bah. Read the above…..how many times in a day do they move 10 stone about?
Oh, I know what you’re going through. My boss’s daughter’s mother in law had dementia.
Don’t make me laugh…..
You’re spending too much money, what does it go on?
Pension is about £700 a month. Nursing homes are from £1500 to £2500 a WEEK around here.
I have POA, but this is a real issue for many carers who don’t hold the budget strings. We aren’t paid, so it’s not like £700 a month covers that much really, when they need so many things, and yes, things for the disabled are blooming expensive.
I had some carers in, who broke her 6 month old toilet being careless, and trashed the saniflo motor. £200 sodding squids for nothing, and that’s never budgeted for.
Bed pads alone are £40 a month. Wipes are about £30 a month. Washing powder and fabric conditioner are about another £20 a month for the stuff she isn’t allergic to. £10 a month for barrier cream. £40 every 6 weeks for the chiropodist. Hairdresser is £20 a month. Baby food puree is £1.10 a sachet of the stuff she isn’t allergic to, and we use about 4 a day for medicines. That’s about £120 a month just for that. She has the juice that only she drinks, at another £10 a month, on the conservative side. Senset foam and soapless body wash add another £10-20 a month. Her daily coffee and treat at the coffee shop costs £5-£6 a day, depending on what she has. It’s her money, and I spend it on her, so that’s another £180 month. You getting this, we’re around £500 ish now, and not yet bought any regular food……
So, with around £180-£190 a month, she gets room, board, all her meals, 24/7 care, an extra heater in her bedroom, which is on high 365 days of the year, washing machine never off, and I also have to budget for presents for her family, who hardly ever visit, and find a way to pay for emergencies.
It actually costs me money to have her here, and work myself like a dog ……………No wonder I’m always skint…
You shouldn’t be charging for rent.
If they can blooming well afford it, they should be paying their way… Nobody said anything about making a profit….it’s PAYING THEIR WAY, like all adults should…
It was your choice, so quit whining about it.
Thinks: ‘F**k off. I never want to see you again.’
Says: ‘My conscience will be clear when the time comes for her to move on.’