Louise Smyth and Rachel Moloney both care for their parents Tom (90) and Carmel (75) who both have dementia. This is their story of a typical day caring for their parents, Tom and Carmel, who celebrated their 40th wedding anniversary in August.
Things feel like they've changed so much within the last year. We thank ourselves lucky that mam and dad are still with us, when many have lost loved ones in the last year. We had hoped mam and dad would be vaccinated by now, Rachel had a phone call to confirm dad would be vaccinated but not mam as she's not over 85, but still so far dad has not had anything. Some days it feels like we are losing hope at getting back to any sense of normality.
Mam and dad really struggled at the beginning as we tried to protect them as best we could; this meant not bringing the grandchildren with us when visiting them, which in itself created a whole other set of headaches for us trying to get partners to mind the children while trying to work at home. Especially when myself and Rachel’s husband are both frontline workers. We are no longer bothered with fighting for better support that we need, we are just too exhausted and keeping mam and dad safe from this virus is our priority right now.
Morning
It’s been a rare uneventful morning thank God, the carer has arrived on time at 9am and mam and dad are up, fed and watching TV by the time Rachel arrives at 10.30. Neither have been washed but that's no surprise and dad is still in his pyjamas so it's time to get showers and fresh clothes arranged. This takes approximately 1.5 hours, now there's the house to tidy up-another hour and when all is done she heads home for a few hours to see her children and fit in home schooling - exhausted. Carer is due for lunch call.
We provide our own gloves and sanitisers around the house as well as masks in case the carers run out and have a sign on the door to deter callers.
At the start of the outbreak we discussed putting the home care on hold as to limit mam and dad's contact, however we were advised that it would be better to just to keep it going.
We have signed mam and dad up to the community Garda scheme and every so often they pop by to keep an eye on them. Myself and Rachel have discussed moving mam and dad in with one of us – but mam won't hear of it and dad gets very agitated out of familiar surroundings and again we run the risk of jeopardising our home care package. I tried staying over, but it was impossible as dad has no sense of night and day and keeps waking you and you end up getting no sleep what so ever. Dementia clocks did not help at all.
Afternoon
I'm in work but get a call to say dad's had a fall upstairs. I leave work immediately and get to mam and dad's in about 15 minutes. Sure enough dad is on the floor, however he is alert and chatting, it looks like a harmless trip, however the carer has already called an ambulance. Dad's annoyed as he wants to get up. I check all his vitals and he is fine and not hurt anywhere. The ambulance arrives and the lads are in full PPE suits which terrifies dad, he's crying and shaking, he thinks they are here to take him away, we also have to put a mask on him which is a nightmare as he doesn't understand and keeps trying to pull it off.
Rachel arrives on scene now too and she stays with mam while I'm with dad. After a good look over, the ambulance lads advise a trip to hospital would be unwarranted and put dad at risk of COVID-19, I'm in agreement and feel it was a very unnecessary call out. Most carers are good at assessing the situation, but since lock down are more happy to call an ambulance for everything as they are trying to keep distance with their patients. Soon dad is back in the sitting room drinking tea and much calmer with the mask off; he’s forgotten the event already.
I head back to work while Rachel takes over for a few mores hours. Mam is missing the grandchildren and struggling without seeing them, she's starting to lose her spark as the days go by.
Rachel calls me to say she's been informed by the care agency that mam and dad have been a close contact from one of the carers so we now have to monitor them very closely for the next 2 weeks.
Evening
I take over now, change my clothes and pop on my PPE to ensure I don't pass on anything from work. I prepare supper and get mam and dad ready for bed. That way the 9pm carer doesn't have too much to worry about. If I get home before 8pm I'll get a chance to pop my daughter into bed.
We repeat this routine over and over every day.
Reversing roles as required and trying our best not to burn out. We pray neither of us gets sick, or worse gives anything to mam and dad. When one of us has to isolate the other just has to take over and work has to understand and be put on the back burner. Rachel has since taken a year out of work to look after mam and dad full time.
Mam was becoming so depressed at missing the grandchildren that we made the decision to bring them back with us, as mam said she would rather catch COVID-19 than pass away not being able to see the grandchildren. It really has given her something to look forward to. Dad turned 90 during lockdown so Rachel had a little party for mam and dad with herself and the 2 children present, the rest of us got to join in via WhatsApp.
By the next morning call mam has a cough, now we have to have her tested, she's prone to chest infections but we have to be safe. Thankfully she tests negative and all is well. That's our first of many scares.
The effects on both my parents from lockdown has been profound, dad no longer talks much to us, masks and PPE frighten him and he wakes up crying a lot. He has a lot more sensory issues and can no longer tell the difference between food and other objects on the table. You have to be very careful as he's like a toddler now; he puts anything into his mouth and has very little sense of danger especially around hot tea etc.
Mam and dad have a little dog-penny who is great company for them. She's very old and a quiet little thing but at one point some carers were refusing calls as they said they didn't want to work with a dog in the house. We couldn’t believe this as we felt this was an excuse to not do calls properly or in some cases at all. After discussing it with the dept of elderly in the hospital mam and dad attend the doctors told us under no circumstances to take penny away. Their world is small enough right now, why take the reason for them to get up and interact by taking their pet away.
Our fight is gone, we are tired, now we are focusing on keeping mam and dad safe and happy during lockdown, it's all we can do. We are extremely careful in our own homes as to not to bring anything to mam and dads. Rachel has put her career on hold and I'm battling my own health issues all while trying to fit in our daily routine.
The difference this time round is, it may have been hard to get a doctor before, now it's impossible so we've had to learn the signs of mam and dad brewing illnesses and how to intervene before needing hospital visits etc. So many times we feel that mam and dad are just not seen as a priority – nor are family carers. You can tell that by the fact that carers are not even a priority for vaccination.
We've had to adapt otherwise we will fail, I've learnt how to cut mam and dad's hair, Rachel how to keep the kids busy when they get bored and her hands are full with mam and dad. You just get on with it. I was lucky when self-isolating to be able to get my family Carers certificate, Rachel is hoping to get it next time.
So far so good, hopefully some sense of normality will come back soon.
Written by Louise Smyth – 23rd February 2021
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