Carer things that worked for Greg – the good, the bad and the ugly

By Greg

Being a carer can be like being on a roller coaster, it can be fun, and thrilling, and downright scary. Sometimes it’s all those things at once. And once you are on it it can be very hard to get off. But then again, sometimes you don’t want to get off, you just want it to go on and on as long as possible.

In this Post I will try to pass on some of my experience gained from many years as a carer. To be clear, I am using the term “carer” to mean an unpaid person who provides care and support to a family member or friend.

The Carer Conundrum

This piece started with the working title The Carer Conundrum. I wanted to write about how it was only once that Trenna was gone that I found the time to think about how I could have been a better carer.

Don’t get me wrong, I don’t have any major regrets, and I’m sure that Trenna and I were doing the best we could under the circumstances. But maybe, just maybe, if we were able to occasionally chill out and just reflect on what we were doing we may have done a few things a bit differently.

But I have decided to take a slightly different approach and on this page you will find my advice on being a better carer.

To most it will be obvious, but I feel I have to point out that this is just MY experience, based on looking after Trenna who had a unique set of care needs.

Trenna had Marfan’s Syndrome, and among many other things had very bad eyesight, and in her later years heart and lung failure. Everyone and every circumstance will be different so, please, have a read and use as much or as little as you think appropriate.

Greg’s Tips

You have to look after yourself to look after them

This includes physically and mentally. I would get up an hour and a half before Trenna was due to wake up and go for a walk. This worked well most of the time, and if she woke up early she would ring me.

It is quite well known in carer circles that the carer quite often dies before their loved one. You owe it to yourself and the one you love to look after yourself.

Use friends and relatives

This is one we didn’t do well. I think partly because Trenna didn’t want to impose on others, and sometimes didn’t want to let on just how sick she was. We also had our routines and shorthand which made it very comfortable just not involving others in Tren’s care needs.

Family members and friends are often wanting to help however they can. Often it will allow them to feel a little less helpless. And they can provide some much needed relief to the main carer.

If it suits your circumstances, give it a go.

Don’t disempower

“No decision about me without me” is an adage worth remembering. It is just the right thing to do to involve the care recipient in all decisions that have some effect on them.

If as in my case that person is your wife you really need to involve them in all decisions about the way you live and all your property. Of course, some people coping with overwhelming medical issues may not be interested in getting involved in the minutia of life, but please, don’t assume they don’t want to be consulted.

Take time out to think

I think this is a real key piece of advice. Try really hard to find the occasional opportunity to take stock and just try to think how you can be a better carer. If at all possible involve the person you are caring for.

We had been really quite good at this for our first 30 or so years together. Insisting to each other that we don’t skip going on holidays away, regular “Saturday night is movie night” nights, and other strategies for managing the stresses of life.

But as Trenna got sicker, and I got busier we were nowhere near as good as we should have been in managing our lives.

Try to find those opportunities to have a think.

Seriously consider respite – I didn’t – but I probably should have

Similar to the above is the idea of respite. Where I live that can be in two forms. Either the carer goes away for a break and some recuperation (and other care arrangements are made), or the person being cared for goes somewhere, typically a residential care facility or a hospital.

We never did it as I didn’t want to leave Trenna, and she didn’t want me to go away. I don’t regret those decisions but sometimes reflect that if we had taken the opportunity I may have returned as a refreshed and better carer.

Be a husband/wife/friend as well

Another important one, and one I at times had difficulty with.

Yes, you are their carer, but you are also their spouse (or whatever). They can be similar roles, but they definitely aren’t the same role.

Try to be both.

I do know that this became MUCH easier for me once I retired from the paid workforce. I was the CEO of a small not for profit and that occupied a lot of my mental resources.

When I would go home I was flat out just being a carer. It was another case of not taking the time out to have a good think about the multiple roles we all play.

In hospitals YOU are the guardian angel (and keep a list of drugs and other vital information on your phone)

I want to be clear that generally people who work in hospitals do a fabulous job. They are almost all there because they want to help people and do the right thing.

Hospitals work remarkably well given the huge numbers that go through them and the absolutely individual needs of each person.

And that, dear carer, is where you come in. You need to play your role too. Watch what’s happening, ask questions. If they are able, make sure your loved one knows what is happening, and make sure they aren’t railroaded into decisions about their care when they don’t feel they have all the information they need.

Another absolutely essential job is to check what medications and treatments are being given. By that I mean EVERY time pills are given make sure they are the right ones and you and the patient know what they are for.

I would say that over Trenna’s quite a few hospital visits I would have stopped the wrong medication being given, or wrongly withheld at LEAST five times. That isn’t five times I thought it was wrong, I THOUGHT it was wrong more times than that. It was at least five times that I queried it, it was checked, and an mistake had been made by someone.

Medication charts can be misread, tired or stressed workers can make mistakes, doctors can be slow at amending orders after reviewing progress, or some other error can occur.

On a different but related point. If you find you are accompanying your loved one to hospital in an unplanned or emergency situation it is very handy to have a list of CURRENT medications and perhaps some key points of medical history stored on your phone. Those admittances can be stressful and it is easy to make a mistake or omission if relying on memory.

Two people to every appointment

Of course the person who has the appointment with the doctor gets to say if anyone accompanies them into the consultation. We found it useful to have two people listening and if necessary asking questions.

Trenna and I didn’t bother asking if we could both come into the consultation, we just did it. Here is a story of when we both went and saw a psychiatrist.

More subtly, with SOME specialists there can be a power imbalance between the all-knowing specialist and the sick patient. Having two people on your side goes some way towards overcoming that imbalance and improving communication.

Ensure someone keeps medical notes

Trenna had complex medical needs and we found it extremely useful to keep good records about what the issues were, what doctors and other medical professionals we had seen, what they had said, and what we had done in response. From the favourable but surprised reaction we got from the medical profession I can tell we were fairly unique.

You probably don’t need to go to the extent of record keeping that Trenna did, but if you can do some it is going to help you and your partner in care. It is great to be able to easily find the names and contact details of specialists and have some idea about when you last saw them. In Australia you also need to know if your referral to a specialist has expired.

As an aside, for Australian readers, it used to be possible to get “ongoing referrals” to specialists you would need to keep seeing. In Trenna’s case that included cardiologist, ophthalmologist, pain specialist, rheumatologist and respiratory specialist You will need to check with your GP whether that is still possible. I know some specialists pushed back on that, in Trenna and my view because it stopped them charging for more than one “initial consult”! It of course also reduces visits to the GP just to get a referral.

Knowledge of what drugs and dosages you are currently taking and what medical tests (pathology, radiology etc) you have done and with which companies they were with all speeds up consultations.

As online personal health records, such as the Australian Government’s My Health Record proliferate and get better this need might reduce. But certainly in Australia we aren’t there yet.

Time appointments to suit the two of you

Don’t get railroaded into appointment times that don’t suit you or the patient. Most medical professionals work more than a couple of hours a day. If the time they suggest for an appointment doesn’t suit you, tell them your restrictions and pick a time that does.

Hopefully as more doctors embrace online appointment booking this will be easier to do.

Try to keep up with medical developments

As if you haven’t got enough to do already!

If you have a good regular doctor, in Australia a GP, they will try to keep up with new developments in the treatment of your conditions. But really it would be impossible for them to keep up with everything.

Try to keep an eye on developments yourself and if you find something you think it is important you should raise it with your GP. However, be aware that there is a big difference between promising new developments and medical treatments that are approved by your government’s regulatory bodies. And to get from the early stages to final approval can take years.

Trust your GP on what is worth pursuing. If you don’t trust your GP it is probably time to find a new one.

Remember, drugs can effect mood and perception

All drugs have side effects. It is worth reading the product information of all new drugs your loved one is about to take. Just don’t freak out about the huge range of possible side effects.

But the advice I want to pass on here is that drugs, or sometimes combinations of drugs, can effect mood and/or perception. Be aware of it, and do your best to tolerate it.

I wrote about this HERE.

Whilst on the topic of mood and perception please don’t forget that if someone is chronically ill or suffering in other ways they may well be exhausted, stressed and maybe depressed or anxious. Both you and they are coping with a lot.

Work flexibility – maybe your career takes second place, or you need to get to the top in a hurry

This one may be harder to implement than most of the advice here. Depending on the health issues your partner in care has you might find you have to miss chunks of work time, either to attend appointments, or in directly caring.

If you can find a job that has flexibility, or a very understanding boss it makes that aspect of your life much less stressful.

In my case by the time Trenna needed a lot of care I was the CEO of a not for profit. The Board I reported to knew that I needed a lot of flexibility and they were very supportive.

I would always make up the hours I missed but often that was at home or when no one else was in the office. I did worry that my sometimes sudden absences may have created an impression amongst staff that I wasn’t committed to my role. That wasn’t the case, but I did worry about it.

Be a fierce advocate

The not for profit I mention in the item above was an advocacy agency, so I probably had a bit of a head start on this one!

Trenna was pretty good at self advocating but often she was tired, in pain or otherwise less able. She would rely on me to step in assist or to take the lead.

This could be about anything, getting a parking spot closer to a venue, getting the NDIS to improve your approved plan, or getting that shop attendant to let both of you into the women’s changing room.

Provided it is a legitimate need that will help your loved one, get in there and (politely) fight for them.

Have a hobby or recreational activity but be clear about when you are doing it

This might be one I just wanted to get off my chest. I don’t know how generally applicable it would be.

If you can have a hobby or recreational pursuit that you enjoy and can become absorbed in that has to be good for your mental health. I didn’t do much of this, and I should of.

The second part of the advice is the one I wanted to get off my chest. In the evening Trenna would often watch TV whilst I did other things. If I was doing home maintenance I would often move Trenna’s 1963 Austin Healey Sprite sports car out of the garage, so I could get better access to my tools. I would then do the maintenance jobs.

Occasionally she would criticise me for all the time I spent working on the car, when there was so much to be done around the house!

Of course it would have been better if I had communicated more effectively with Trenna about what it was that I had been doing.

Friends are important

In an earlier piece of advice I spoke of letting friends share the caring responsibilities. This is a different point.

Don’t forget you have friends, and even though you can’t do the same things with them that you once did, they probably still want to be friends. Socialising and escaping from your own little bubble is important if you can arrange it.

One way we did that was through casual, no fuss lunches. I describe how to organise a Trenna Lunch HERE.

Remember that you are not alone

It can be comforting to think that you are the only one who is on the carer roller coaster as it plummets, apparently out of control into an abyss you can’t quite see.

I remember at work once comparing notes with a contractor who also had a chronically ill wife. We realised we had both been up at 3am the previous night dealing with carer issues. It gave us an instant bond.

There is almost certainly a carer association in your nearest city that can provide a range of supports and services. They love to hear from carers who have been dealing with everything themselves. Contact them, you may be amazed at the range of ways they can enrich your life and that of your care recipient.

There are online carer groups, and support groups for various medical conditions and you may also find those helpful.

It’s NOT their fault, and it’s not your fault

Don’t forget that it’s not their fault that they are crook, and it’s not yours either. Shit happens, and maybe at the moment it is happening to you. Just keep an open mind and look out for those little gems and moments that make all the effort worthwhile.

“I’m not much trouble!” but don’t dwell on it

The two of us were having a disagreement about something once, when Trenna responded “look, I’m not much trouble you know!”
It made me stop, stunned and silent. Then I’m pretty sure I spontaneously laughed.

After a moment so did Tren.

I think what she was saying was that she did her best to reduce the impact on me of her various problems. And she did, she was very stoic. But it was also wrong to imply that her condition was having little impact on me.

Chronic illness and/or disability in the family IS going to effect everyone, and there is nothing wrong with acknowledging that. So, the advice I am offering is don’t ignore or diminish the situation, but also don’t dwell on it.

Good luck.

Saying she will live until 70

Cherry our wonderful GP raised a surprised eyebrow when I mentioned this new strategy.

If you have read other parts of our story you may know that on our first date Trenna told me that she didn’t expect to live much longer. She lasted at least 30 years longer than we thought.

I told that part of our story to The Guardian last year, and they published it, HERE.

In the last several years of her life we could both see Trenna was declining but we really still had no idea how much longer we would have together. Although it wasn’t a conscious decision there were things, like projects for the future which didn’t seem to demand a high priority. We were living very much in the present, coping day to day.

Then when Trenna was about 60 years old I decided to assume that she would still be around when she was 70. Cherry, Trenna and I all knew that wasn’t all that likely, but that mindset allowed me to think a bit into the future and plan a bit for the next few years.

A good example was a new patio out the back of the house that we had talked about and wanted for years. We just never got around to organising it. However my new mind set made it obvious that the sooner we got onto organising it the more time we would have there together.

Get hearing aids if you need them!

I had had hearing loss for quite a few years. But I was reluctant to get hearing aids. I felt I was too young for them, and they are expensive.

I eventually came to the realisation that I was doing Trenna a huge disservice by not getting some properly fitted hearing aids. At doctors’ appointments I was mishearing quite a lot of what was said, and I also started to worry that I might not hear Trenna if she called out for help.

This all coincided with me retiring from work and getting a government Carers Allowance. A nice side benefit of that was it made me eligible for government subsidised hearing aids.

From when I got them I was amazed at the difference they made. I put them in first thing in the morning and take them out as I got to bed.

If you need ’em, get ’em!

Don’t shy away from the unlikely – the dignity of risk

Be aware of the trap of underestimating what is possible. When we were in our 40s and early 50s Trenna and I very rarely went to a concert and certainly not to a music festival. This despite us being big music fans.

Then in 2011 I won a couple of VIP tickets to the Summadayze Festival. Well, why not?

We loved it.

A couple of years later we went to Soundwave, a heavy metal festival – even better, we really loved that. Trenna decided that although it took quite a physical toll it was a price she was prepared to pay for the joy it gave her and the fun of joining a mass of happy revellers.

We discovered that because of her bad eyesight, the mosh pit, right up the front was the best place for her. And that’s where we were for subsequent concerts by Black Sabbath, Bruce Springsteen, Pink and the best experience of our lives, The Rolling Stones in 2014. See those stories HERE and HERE.

It was a very unlikely place for someone with her disabilities to watch concerts, but she and I loved it.

By February 2020 Trenna was on oxygen full time, and when she went out she was always in a wheel chair. However, that didn’t stop Ruth the OT organising for Trenna to go horse riding!

My point is that people can be tenacious and resilient. Perhaps suggest some activities that you have previously thought too hard. And please, don’t stand in the way if they want to do something you think is outrageous.

Perhaps some unlikely experiences are just what the two of you need.

Book big hotel rooms, with opening windows, you might be spending a lot of time in them

Experience taught us that if we travelled long distances by plane Trenna’s health would suffer. Quite likely some vertigo, but in the cases of our trips to the USA and Prague continual Atrial Fibrillation (AF).

If we booked a spacious room, preferably with a view it helped a lot if we found we were confined to the room. Of course, it was more expensive, but we always felt the extra expense was worth it.

In these COVID uncertain times I still use this strategy when I travel.

Sort out your finances. “What’s yours is mine and what’s mine is mine.”

That is a quote from Trenna. But she could only make it because the two of us were in absolute agreement about how we managed our finances.

I’m thinking mainly about couples here, but having worked for 10 years in the area of Elder Abuse I know it can be about adult children and their parents. Or in all sorts of relationships.

Money is a pernicious thing. If you are going to develop a great relationship with the person you are caring for you both need to be on the same page about finances. Who makes financial decisions, whose name bank accounts and assets are in, power of attorney arrangements and even ensuring wills, of all parties are up to date and in order.

I’m not going to weigh into what those arrangements are, but please, get your affairs in order.

Read my posts about Things That Worked for Trenna

A few of the pieces of advice above touch on other advice I have offered about how Trenna coped with her multiple health issues.

It ended up stretching to four different posts and there are a lot of suggestions and advice in there. That series starts HERE.

Like the advice offered above, lots of it, possibly all of it may not apply to your situation. What it will do is give you an insight into how one couple dealt with the issues they faced.

Trenna’s Advice

Whilst I’m dishing out the advice I might as well pass on some valuable advice that I received. In fact I was given this advice countless times, by my own wonderful wife.

I used it when Trenna was around and I still use both pieces of advice constantly.

What’s more when I was in the paid workforce I would frequently pass one or the other of these gems on to staff members.

The advice was

Think it through before you do, and

Don’t overwork the situation

All the best – we are all on your side.

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Some Posts That Have a Marfan Connection