Carers Louise Smyth and Rachel Moloney – A Day in the Life
‘We don’t have time to get sick in our families as our parents Tom and Carmel need us to look after them and be on call 24/7. We are their voice, their protection and their care’.
Louise Smyth and Rachel Moloney both care for their parents Tom (90) and Carmel (74) who both have dementia and this is a typical Tuesday for them due to the lack of services available to them.
It’s my day off from work so I get my two-year old daughter Eve up, dressed and fed for 9.00am to aim to be at my parents for 10.00am in order to take mam to her Alzheimer day centre. She’s only started in the day centre in the last six months and she loves it there. We’ve mostly been the same routine for the last four and a half years when before then mam had been caring for dad alone until her own health broke and she suffered from a brain injury which brought on her dementia.
On arriving to my parents I find the carer hasn’t arrived yet and mam (73) has had a fall when trying to get to the toilet so has been on the floor for a while now. Mam does have a fall alarm on her but forgets how to use it so we rely heavily on the carers turning up on time to assist mam from bed but this often doesn’t happen. I quickly check on dad, thankfully he’s still sleeping.
Mam is crying now as she’s embarrassed so I calm her down and put Eve in front of the television to watch cartoons as I get assistance from our neighbour to lift mam from the floor. She has a broken back so we have to be very careful when lifting her. We are very lucky as my parents have amazing neighbours that look out for them a lot. I then get mam cleaned up and downstairs ready for breakfast.
Now I can check on dad to make sure all is okay with him. Dad is nearly 90 and has end stage dementia and has heart trouble but yet his care demands are not as intense as mam’s who has dementia due to a brain injury caused by hydrocephalus over four years ago.
She broke her back two years ago and had a hip replacement three years ago so her care needs are much higher now as she has mobility issues and is incontinent.
I start breakfast and give mam and dad their morning medications whilst calling the care agency to find out why no one has showed up this morning. I then call the day centre to tell them we will be late. It’s now 11.30am, breakfast done I set off to drop mam to the centre.
The carer is arriving when I am leaving so I tell her what needs to be done with Dad before leaving. After dropping Mam off I arrive back to find the carer has left after only staying 10 minutes on what should be an hour call. Back on the phone to the care agency while Eve gets put in front of the television for more cartoons.
Its past midday now and Dad needs to be showered and dressed as this wasn’t done by his morning carer. When I have that done about 40 minutes later it’s time to get the house clean, beds stripped, top-up Mam’s toiletry supplies and put washing on. When the next carer calls for the half hour lunch call it frees me up for 30 minutes to get Eve something to eat and play with her and perhaps a quick cup of tea for myself.
Then back to the housework. All this brings me up to 3.00pm when Mam has to be collected. I leave Dad to watch a show and collect Mam who’s tired after a good day at the day centre. When I get back, Tesco is arriving with the groceries which I get put away after getting Mam settled in the living room with Dad and Eve.
The carer has arrived to get my parents dinner ready and give the evening medication. My sister, Rachel, arrives down with her two-week old baby, Holly, and four-year-old, James, to make sure everything is okay and I give her the handover for her to do tomorrow when I’m in work.
When one of us is in work, the other is with our parents looking after them, so it’s rare when we have time off for ourselves. Mam only goes to the day centre once a week, so Rachel will not have to do as much running around tomorrow with the children, however she will still have her hands full, especially if there’s a doctor or hospital appointment to get to.
I aim to be back home for 6.00pm so I can have dinner with my husband and daughter before she goes to bed. By 7.00pm I am fit for bed and nothing else, but my own house needs tidying. We have to rely on carers who we cannot always rely on to show up or perform their duties correctly which is a huge worry for us and therefore means we cannot take any time off for our own family time. We only get two care calls at the weekend, so myself and Rachel spend most of our time at the weekend with our parents.
We get very little assistance from the state and are told we are at our maximum hours for our home care package which is 22 hours a week. Neither myself or my sister qualify for carers benefit as we both work and in 2019, we got six days of respite as it’s hard to get a room for a couple together (or so we’ve been told). My parents don’t qualify for assisted living as they’ve been assessed as high care patients who need 24 hours care (which the government cannot provide in a home care package). However, we are told they are not bad enough to go into a nursing home either and we are coping fine as a family – we are not!
No one wants to know, they are just another number in the states abysmal care package for dementia patients. We constantly have to fight for their care needs and wait weeks for GP or hospital appointments only to be put on waiting lists for years if any procedure is to be carried out or to be told Public Health Nurses or doctors will call back, only for it not to happen.
We are stressed, exhausted and tired of fighting and are missing our own children growing up, but we do it because we are a family with vulnerable parents who cannot fight for themselves and we cannot leave them alone at the hands of a Government who doesn’t want to know and doesn’t care.
Written by Louise Smyth on Tuesday, 14th January 2020.
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Alzheimer National Helpline
The Alzheimer Society of Ireland National Helpline is open six days a week Monday to Friday 10am–5pm and Saturday 10am–4pm on 1800 341 341 or firstname.lastname@example.org