Whose Life Is It?
By Dr Maree Todd
A geriatrician’s caring journey with her parents has been a professional eye-opener.
I have been working with older people and their families for 20 years. Over this time I have seen the love, dedication and frustration experienced by family caregivers.
My own journey supporting my father, Russell, and his adventures with our health system, have left me in no doubt where the strengths and weaknesses are! On the same day, Dad could experience the best and the worst treatment possible.
The best moments were when people talked to him and our family about what was happening. Kindness and compassion were other highlights. Technical care was generally excellent.
One of the worst moments was when a nurse manager told Dad and the family off when he needed to go to the toilet after being in the fracture clinic for two hours, preceded by a one hour ambulance journey to get to the clinic! I was helping him to use the urinal at the time; there was no dignity or respect.
Another problem was developing bilateral heel pressure areas within hours of being on the medical ward, despite drawing Dad’s high risk to the staff nurse’s attention. When she dismissed my concerns and I ‘pulled rank’, explaining my background, I was still ignored.
Failing to note the family’s observation of clinical change, especially the onset of delirium, was another frequent problem. My mother became an expert at spotting this, and she and their GP had kept Dad well for over a year with early treatment.
Getting something to eat was an ongoing issue. Even if a nutritious meal was provided, it’s very hard to eat it when you cannot reach it, or are too disabled to take the lids off the various food items.
One day I found Dad in tears. He was finally feeling well enough to eat. He couldn’t stomach the pureed veges and meat on offer, but was keen to try the jelly and ice cream. His attempts to open these resulted in him tipping the contents down his front and into the bed. Dad’s call bell had not been working for two days, and in any case was tied to the side of the bed.
He was still on a pureed diet four days after the team had decided he could eat normal food!
No wonder he broke down.
Dad had coped with a rapidly deteriorating neurological disorder, multiple falls, a fractured leg, and the pain from the pressure areas, but this was his final straw.
Those chips probably rated amongst the best meals of his life!
Having gone through these experiences with my parents, following are some suggestions for other families.
Try and learn as much as you can about the disease or condition your relative has. In time, you will become the expert on their care and treatments, and should be a partner in care with the health professionals. Ask for a district nurse to come and show you how to manage skin care, bed washes, or any other tasks you’ll be carrying out at home.
Be informed about the details of your relative’s condition. Read and keep all discharge summaries. Ask for copies of clinic letters and care plans. Ask for a written medication plan or ‘yellow drug card’. It is often useful to take these with you to a hospital appointment, especially if you have had consultations in private. Make sure the hospital doesn’t steal your copies!
If you are going to a clinic or to see your GP, do some preparation. Write down your questions. Put in writing your concerns about your relative if you do not like talking about the problem in front of them. Ask for a double appointment with the GP if you think there are several issues to deal with at once. Physically take all the medications with you to hospital clinics and admissions – but keep hold of them!
Go to the top!
When your relative is in hospital, find out who the consultant is and when their ward round is. This is usually when everything is updated and planned. If you have time and can wait, you could try to be present when they visit. Failing this, you could ask that the registrar or consultant ring you with an update. Do this during working hours. It is very helpful to appoint one family member to be the key communication person. It is impossible to talk to seven different children every day! We can arrange family meetings.
Ask for a geriatrician’s review
If your relative is older, has lots of different problems, and is starting to lose their independence, it may be time for us to see them. Do not wait for a crisis. Get our advice before making any major moves to a retirement village or residential care.
Look after yourself
Carers of older people have poorer health than expected. Make sure you see your own GP regularly. Take time out. After all, nurses get days off and holidays – you need these, too.
If people offer help, say yes. Offer suggestions, as family and friends are often keen to do something, but are not sure what to do. Organise them!
In the big plan of life, it doesn’t matter if the washing is not done today, the dusting is not done, or your spouse wants to dress himself in the stained shirt. It is better for them to retain these skills with imperfection than argue and both become stressed.
Ask yourself: what is the worst thing that might happen? Then see whether your loved one would want to accept that risk. Often the answer is yes.
My Dad could barely walk.He fell most weeks and sometimes daily, but his greatest pleasure was getting down the stairs and into his workshop to potter. Much of his time was spent devising gadgets to assist him in his daily living. This and his garden kept him going for longer than the avoidance of these dangers.
I can hear the echoes of my rehabilitation team (‘Unsafe! Unsafe!’) and, yet, whose risk is it? Yes, worrying about and dealing with the consequences of taking risks can be stressful for the family. My Dad lost bits of both thumbs in the skill saw! But doing, overcoming challenges, and the sense of achievement is what makes a life well lived.
Make a hospital survival plan
- Work out what is essential to take to hospital. Some of my Dad’s essentials included his cell phone and charger, and lollies.
- Do not take valuables.
- Label things.
- Try and be there until the admission process is complete (take a book to read!).
- Visit at meal times to assist. Ask what you can bring to encourage your loved one to eat.
- Small pots of ice cream, ice blocks, small bite-size sandwiches, or savouries may tempt the appetite.
- Organise visitors so not everyone arrives at once.
- Make sure people talk to you about what is happening.
- Do not agree to discharge from hospital if you feel unprepared and have had inadequate communication. Simply refuse to take your family member home!
- Use a support person. Two heads are better than one when taking in new information, and making important decisions.
Above all take time to have some fun each day!
See the funny side of the various unplanned situations you find yourselves in, and organise a regular treat to look forward to (each week, or more often).
With acknowledgement to my mother, Jean, for her fantastic care and forbearance!