It is obviously an unsettling and frightening time having to manage with your loved one when they are admitted to A&E with a sudden deterioration in illness. Having been through that experience a few times in my life and having now been able to reflect on what did or didn’t help me emotionally as a Carer, I hope that by sharing my tips can help provide an emotional baseline on how to cope yourself.
Whilst we want to think we can avoid hospital admissions, you have to be realistic and aware that there is a high risk of it occurring at certain times of year. I found that by having some clothes and toiletries put to one side decreases the stress of having to chase around for supplies if they should be admitted to a ward. It doesn’t have to be anything extensive, just a toothbrush, toothpaste, wipes, a pair of fresh underwear, and comfortable baggy loungewear or pyjamas. It saves you having to run out of the hospital if you find yourself admitted out of hours when the shops may be closed. It is also best to have an up to date note of any current medications your loved one is taking as hospitals cannot easily access this information and may want to know of any contraindications of prescribing drugs. Make a note if possible of any recent Consultant or Nurse Specialist meetings so that you can pass on any recent information as regards the care procedures in place; this especially comes in handy when dealing with Doctors who have little knowledge of the lung disease at hand.
Give Them Space Upon Arrival
Despite the extensive interaction you may have had with ambulance technicians and paramedics, when your loved one is transferred into Hospital the staff present will want to spend time finding out about what has occurred and what they can do to help. Unfortunately, there is little opportunity for them to find out via previous notes as these can take hours to arrive, so they are essentially running on the little evidence you have already given. Initially, you will be asked to wait outside of the triage or resuscitation room, purely so that the team can focus on getting close to your loved one and making them comfortable. It may feel an eternity, but trust in their efforts and they will soon come and talk to you. Where possible, make sure your loved one knows that this is the case when being transferred into hospital as it will be frightening for them to feel isolated and surrounded by strangers when they feel increasingly vulnerable. Once time has passed, you will be allowed to sit with them but be sure to adhere to any rules in place as in some trusts only one family member will be allowed in at any one time.
Know Their Wishes
I know it’s a difficult conversation to broach but trust me in saying that it’s far easier to be in a hospital dealing with the inevitable questions about what their wishes are if it’s already been raised. For many with advanced lung disease, the conversation of Do Not Attempt Resuscitate orders usually arise in Resuscitation rooms if it hasn’t already done so with your GP, and is usually recommended if there is little probability that they would survive an invasive resuscitation attempt should their heart stop beating. This is the patient’s decision and so as difficult as it is, you have to respect their wishes and support their choice. If a DNAR order is in place, be sure to inform the healthcare professionals and if possible, have the signed form at hand so they can add this to the patient’s immediate care plan. However, to make it clear as there is sometimes confusion, a DNAR order does not prevent any form or treatment but instead only prevents cardiopulmonary resuscitation (CPR) if their heart should stop beating. This could be something worthwhile to raise with your next appointment with the Consultant.
Carry on As Normal
This may seem a little far-fetched considering the circumstances, and it may be emotionally difficult to navigate but it is important if you can to try to remain calm and to behave as nothing drastically traumatic has occurred. Find what creates your normal, for us it was visiting the coffee shop for a Latte and bringing it to sit with Dad whilst indulging him with his favourite fruit pastilles and jelly babies. He loved to read and listen to Classical Music, so I always brought in his favourite books and charged up my iPod with tracks on that I knew he could enjoy. This also helped drown out the overnight hustle and bustle that wards bring so that he could sleep better. Wards have various visiting times but get into a routine when you can visit them. For me it was most of the day and I usually sat and had my Lunch when he had his whilst watching the news or reading the paper. Dad was one who didn’t like to stay in hospital gowns, so I regularly bought him fresh pairs of pyjamas as well as his socks and slippers so that he felt comfortable sitting in bed for prolonged periods of time. As a Carer you’ll already know a wealth of what provides comfort to your loved one, tap into this knowledge and it’ll serve you well.
Prepare to be Stubborn
Now I must preface this by saying not all healthcare professionals behave in such a way, but likewise in my experience, you can’t trust every single person to be as caring and compassionate as you hope them to be. I want to use my experience in the hope that so that you aware of the need to keep your eyes open to make sure your loved one is getting the appropriate attention so that all their needs are met. A lot of Nurses I came across had little to no knowledge of how to correctly manage my Dad’s oxygen needs which put him through unnecessary stress and anxiety. And it’s sad to say that some HCP’s I came across were very arrogant and assuming in they knew better than you did. Obviously in some cases this is correct, but you have to remember that you are the one living and caring for that person full-time and you have a pool of knowledge as to how they feel comfortable, it may not be textbook but if it works, then why should it be denied? You don’t have to be stubborn so much as behaving angrily or inappropriately, but stubborn in that when you recognise what can be changed to make their stay in hospital more comfortable, make it heard. If at any point you feel you are being ignored (as can be the case) then be sure to communicate with the Charge Nurses or Sisters of the ward as to how you feel things can be improved. Likewise, befriend those you feel are trustworthy and prove their compassion so you can get them on board if at any point you do struggle with other members of the care team.
Over time you will become accustomed in how to cope when having to deal with hospitals, and whilst I hope for your loved one and for you, that this time is limited so that they can remain comfortable at home, I have found it is better to be braced. It isn’t a smooth path and in no way do I want these tips to feel as either a quick fix or something that should be adhered to. There are always bumps in the road, and I can only hope that some of my experiences will give you a baseline of how to cope. It is absolutely imperative that you find someone to talk to whether it be another family member or a friend so that you can relieve your own fears and struggles. And of course, remain human to your loved one, allow them to know how you feel so that they too can recognise they hold purpose in your life, trust in them to open up and be honest of your feelings as it will inevitably bring you closer. Don’t wrap them up in cotton wall, they still want to feel needed themselves and you sometimes have to forget the fact you feel the responsibility of being a Carer.
However, this post is a guide and only what helped me cope. The best thing for you is to find out what helps you adapt in these emergencies, try to release what hurts you and take each day just one step at a time.