Is this YOUR Carer?!
I am Frances Turner aged 81 living in a house in Sydney’s Inner West and Carer to my son Felix aged 51 who has Myotonic Muscular Dystrophy, and two cats. Felix’ 39 year old electrical fitter brother, Steven, lives in Melbourne with his partner and also has two cats.
The boys’ father died 17 years ago. We came from UK as Ten Pound Poms on the Fairstar in 1969 and the boys were born here. We lived on Dangar Island in the Hawkesbury River for 25 years and commuted to Sydney where we both taught Mathematics and the boys went to school. We have no extended family except for my brother in the Blue Mountains and a few in UK.
Felix went through James Ruse Agricultural College and then trained as a builder. He was diagnosed with MMD aged 30; we were all tested and his father was the carrier, Steven and I were clear. Felix lived with his girlfriend (who worked as a nanny) in Sydney for many years. He was her support and house-husband until his condition deteriorated. He came to live with me about 2 years ago when his stairs became unmanageable and I moved into a spacious modern house on one level.
Felix has always been a loner, a reader, interested in computers, word games, self-development courses and motor bikes in the days when he could still ride. He is in the throes of writing a book. We are very fortunate in that we have no money worries.
We became involved in the MDNSW community when we needed more information about MD and support to deal with NDIS and the care situation. It is an excellent organisation.
Our days revolve around Felix’ needs for sleep, the toilet and being awake and moving. There is no routine. There are some regular weekly activities such as physiotherapy, massage, occasional medical appointments, support workers for personal care, cleaning, some cooking for which Felix has to be awake. I have a few regular activities away from home for which we have a carer present in case of need. When he is awake and up Felix needs help dressing and accessing food and drink; he now needs a hoist to transfer between bed, commode and power-assisted chair.
Felix can still feed himself, clean his teeth and face and hands; he can also use the toilet on his own successfully once on the commode. I can safely leave him for up to two hours once he is in bed and asleep or once he is up and in his chair with food and drink accessible. At these moments I can do a quick shop or local walk. But he goes to bed when fatigue overcomes him; he gets up when he needs to when lying in bed becomes painful and he has been turned over and changed position and it is better to sit up in his chair; this happens any time during the 24 hours. Similarly he doesn’t have regular meals but only eats when he is hungry which means he doesn’t overeat. Thus I am basically on call 24/7 when there are no carers present for specific tasks.
Covid isolation has made very little difference to our daily life. We are both avid readers and communicate with groups by email. We have had fewer carers in but have had plenty of interaction with neighbours and friends calling at a distance. I go shopping locally despite my age and Felix’ vulnerability, but have been meticulous wiping all the shopping items, stripping off my clothing for washing and showering, wiping car door-handles, steering-wheel, etc. with soap and disinfectant. My main problem has been lack of exercise as I usually swim 6 – 7 km a week which has been impossible due to the restrictions.
The main and best treatments for Felix have been physiotherapy (NDIS funded) and massage (privately paid). His heart is monitored at three-monthly intervals: he was recommended to have a pacemaker which he declined. Otherwise sitting in the sun and visits from our friends are our main therapies. As a loner and “isolate” in the sociological sense Felix is reluctant to go out or use programs, or see a Speech Therapist. We are working on getting a companion card and I am hoping that he will be more willing to leave the house when he finally gets his own power-assisted chair. I’d like to organise kite-flying in the park across the road; and also perhaps to visit a Virtual Reality Centre.
The difficult issues are trying to work out how to make sure Felix has the maximum choice and control over his life and daily activities – particularly when we disagree on what needs to be done!! These are works in progress where family dynamics and mother/son relationships rear their heads (“bloody fussy mothers, it’s my body and I know how I feel”). They can be simple things like putting cutlery or clothing or food within reach; or more difficult like diet and personal care (“no not another muffin or do you really want 3 tins of mackerel one after the other and please have more vegetables and it’s time to cut your nails. And what about going out for an excursion?”). Fortunately we are both quite cerebral and articulate and I hope reasonably honest with ourselves; it can still be painful while working things out. I have plenty of intelligent, experienced, varied and listening friends to whom I can vent, but I don’t think Felix does.
My role as a carer is 24/7 – like being back when my son was young – but now not as cuddly! So an obvious problem is being tired and out of step with sleep – not so much lack of sleep as broken sleep. A particular manifestation is the occasional sudden wave of weepy emotion which occurs without warning: just a result of being tired and feeling in need of a hug from the right person who, of course, isn’t there! I wish we had more things we could share with one another but our tastes are very different. However we are both happy reading our own genres in the same room. I really don’t know what I can do if he gets depressed. All I can do is empathise which doesn’t help either of us. More swimming needed methinks.
The hardest thing about having a family member with a disability, particularly as I am nearly 80, is the problem of what to do if I die first or become incapacitated myself. Who will care for Felix – immediately, medium term and long term? Can he manage on his own? I have organised my will to make sure he has a Trust Fund and his brother says he will take over as carer. We have very generous NDIS funding and he could manage short to medium term.
One positive about Felix’ disability (and he has agreed I can use it) is that caring for a disabled son is a very acceptable excuse for avoiding things I don’t want to do!! And we are aware that there is always somebody worse off than ourselves. Another positive about Felix is that he seems to be frustrated rather than depressed which I find easier to deal with. We are both aware of the importance of politeness and good manners. Another plus is that the range of interesting carers we have is widening our social horizons and awareness.
As a carer I have wonderful support; friends, MDNSW personnel, NDIS funds. Some difficult issues carers face include how to cope with bureaucracy, how to deal with sudden emergencies, and loneliness. My sanity-keeping activities are swimming, reading, playing bridge, doing cryptic crosswords and neglecting my orchid collection.
My main advice for family members and carers of people with MD is to stay in touch with MDNSW (or Vic or Qld) for advice, sharing experiences, support and information. Always accept help when it is offered – but make sure it is appropriate help. Never be afraid of asking for advice or help – nothing is embarrassing. Then make sure that both carer and caree have respite from one another.
Addendum: A typical 24 hours.
Midnight: both of us asleep in our beds. F has a doorbell to wake me if he needs anything and also a Baby Monitor.
12.30am: F’s doorbell wakes me. “A drink please and turn me over. What’s the time?” Done. Back to bed
1.30am: Doorbell again. “I think I need the commode but not yet and turn me over please”. Ok. “Can you straighten my arms for me and turn the heating on. I think I’ll want to get up soon” ok. Back to bed and I read for a bit.
2.15am: Baby monitor “Mum”. Ok time to get up, use commode, dress, into chair, off to computer in the living room to play game. “Are you hungry? Need water?” “No thanks, just need water by the computer”. I sleep on the settee and the cats join me.
5.30am: “Mum the paper has arrived, the cats are starving and when you have a moment I’d like a hot chocolate drink please”. Prioritise: coffee with a dash of whisky and blood pressure pills for me, feed cats, get paper, fix hot chocolate, do cryptic crossword.
7.00am: “I’m scrambling eggs for me. Do you want any breakfast?” “No thanks but in about an hour I’d like that helping of Spaghetti Bolognese left over in the fridge. You can put some fresh spinach in if you like when you heat it up”.
8.30am: F moves to kitchen and he has spaghetti Bolognese (with extra spinach!) and lemonade and reads his kindle. I read the paper. We discuss the day’s events: Carer coming at 11.00am to wash F, Physio student coming at 6.00pm to take F through passive exercises; I want to shop so we make up a list; it is a nice morning so F moves outside to be in the sun and strips off his shirt; he doesn’t cut his fingernails despite my nagging (most likely because of it). He has 3 muffins and a glass of milk. I have long phone conversation with friend whose son is waiting for Covid 19 test results. Email friends to arrange a Bridge afternoon next week.
11.00am: Wonderful carer G (from HireUp) arrives; he and I change F’s bedlinen and then he takes over getting F to bed via commode. Bathroom renovations “in the pipeline” so F has to have a sponge-bath on his bed. I potter mildly and wash-up.
Midday: G goes, F is clean and staying in bed for afternoon nap. We do the SMH quick crossword together until he drops off asleep or it’s done.
12.30pm: I zip out to local supermarket for milk, spinach, cheap mince for cats and any specials that catch my eye. Back home, wash hands, check F still asleep and then I wipe car door handles, steering wheel, with soap and disinfectant, wipe down shopping ditto, dunk plastic shopping bags in disinfectant, strip off and have a shower. Run a laundry wash. Check F who needs a drink and help turning over. Have afternoon nap in bed setting alarm for 5.30.
5.00pm: cats land on me saying they are starving again so off with the alarm, feed cats, prod F who needs a drink and a turn. Remember the washing and hang it out.
6.00pm: J, a 4th year physio student (from Hire-up) arrives on my bicycle – he borrowed my spare one when his car licence was suspended for 3 months and it keeps him fit, avoids public transport and I rarely use it. J washes hands and wears a mask. F sort of wakes up during the exercises and J also gets him out of bed and into his chair via the commode. While J is here I do a quick Dan Murphy run… whisky getting low. Wipe the bottle on return plus door handles and wash hands.
7.00pm: F now up and playing computer games. He also pays some bills, checks his HireUp carers and puts out for a job for someone to cook for him and for a carer for when I am out playing bridge. I am inspired to cook this evening so F and I decide on a rice, corn and tuna (how seventies!!) dish which he likes and it will make another 3 helpings to freeze. F helps as much as he can: he checks quantities and timing and order of mixing everything; he operates the timer for the oven. I have a huge chicken salad (which F dislikes).
10.30pm: F happily reading his Kindle or on his computer – he can move easily from kitchen table to computer desk on his power-assisted wheelchair. I check he has plenty of water by his computer and he can access milk and biscuits from the fridge and pantry. I read myself to sleep on the settee and the cats join me.
Midnight: I am asleep on the settee, F is pottering about but getting tired. He will wake me when he needs to go to bed which will be anything from now till 6.00am.