Yesterday, I told you about what’s been happening with my father, who slipped into an extended Delirium following knee replacement surgery. For the family, seeing a loved one in Delirium can be highly distressing, but for the sufferer, it can be absolutely terrifying, and that terror can increase their confusion. Their best chance at recovery is you and how well you cope with the situation.
My family rallied round my father during his Delirium. Here are some of the things we learned in terms of how best to help Dad at the time. Many of these we figured out instinctively, others were doctor’s orders and others came via on-the-fly web research. We put all of them into good practice. (But again, for a general disclaimer, let me remind you that I am not a doctor! Note also that, because my Dad was a fall risk, and apt to getting out of bed in his confusion – and falling over – we had to be extra vigilant with him.)
- Surround them with familiar objects and people. Dad was unable to return home, and even once we got him into a private hospital room, it was, well, a hospital room – utilitarian and depressing. Amongst the everyday items we brought him from home: his reading glasses (glasses are very important, even when the patient has no concentration to read), his briefcase filled with his daily notepads and diary, a framed photo of Mom, his toiletries bag, several changes of clothes (even when he was in a hospital gown, Dad liked to know where his clothes were and see them folded up), the last week’s home-delivered newspapers. And, most important, he had a steady stream of family visitors, full of smiles and love.
Provide visual stimuli. A wall clock was mounted in Dad’s line of sight and he often commented on the passage of time (too slow in the hospital, always too slow). The room lights always shone bright. The television was on almost all the time, even if the sound was turned down. Visual stimulation, Dr Y told us, keeps the brain active.
- Speak in short, clear, simple sentences. Now is not the time to test their vocabulary or hearing.
- Explain, explain, explain. Get others to explain. And then recap the explanation. In Delirium, the patient is confused most of the time and constantly forgetting what’s happening moment to moment, day to day. I would often explain to Dad that he was in hospital, and a minute later, he would ask again how he got there. In addition to answering his questions, I used every opportunity to explain in a way that, if he was partially lucid, wouldn’t seem too much like spoonfeeding. Someone new came to visit or change shifts with me? “Let’s explain for their benefit, Dad, what they missed, shall we?” When a new nurse or doctor came in to administer another test, I’d make them explain – addressing Dad, not me – what they were doing and why. And then I’d recap what they said. Always emphasising the benefits and telling Dad how well he was doing.
- Check that they’ve heard and understood. After every explanation – and, during lengthier explanations, at a few interim junctures – I’d check, “Dad, do you understand?” If he didn’t, we’d explain explain explain again.
- Answer each time as if it’s the first. Dad asked again and again: where am I? why am I here? how did I get here? how long have I been here? what’s going on? where’s your mother? who are you working for….? It is hard to remain patient the 100th time you’ve answered a question, but suck it up. They sense your frustration, and may react badly to it, especially if they’re feeling paranoid. Do not exchange knowing glances or wry smiles with others in the room. One of the nurses did this, and Dad jumped on it, convinced that it was proof she was hiding the “truth” about a conspiracy plot.
- Don’t talk over their head or pretend they’re not there. Make sure they’re involved in whatever the main conversation is, particularly if discussing them, their Delirium or plans for their medical treatment. This helps counter their feelings of powerlessness and paranoia. If you need to have a different kind of conversation, leave the room.
- Help them with simple tasks – only as long as they really need it. Initially, Dad needed help with eating, drinking, bathing, urinating etc, even adjusting himself in the bed to find a more comfortable position. But as soon as I sensed he was able to do more, I made him take charge again. Each step towards greater independence was important.
- Accompany them to hospital tests. These tests can be scary at the best of times, but in Dad’s paranoia, he was often convinced that these were brainwashing experiments or torture. I would go with him – carrying his briefcase, reading glasses and a urinal (just in case) – to reassure him, and explain explain explain what was going on. (Note: The hospital staff didn’t exactly invite me along, and clearly didn’t want me in the way sometimes, but I politely insisted. The only time you really have to leave the room is when they flash the radiation during X-rays and cat-scans.)
Take trips down memory lane. Reliving happy memories from the past can help bring them back to the loved ones in the present. With Dad, we scrolled through a Facebook group from his hometown high school, thumbed through his and Mom’s 50th anniversary photo album and swapped lots of family anecdotes. And sometimes he just talked and talked about the past – and I listened, even if he’d already told the same story ten times. Dad and I are also big fans of old movies, so we enjoyed watching the Turner Classic Movies channel together – a mini Mickey Rooney marathon, John Wayne Westerns, Gone with the Wind and Singin’ in the Rain – plus reruns of Cheers and Golden Girls on the Hallmark Channel. Often, I’d have IMDB open as we watched and quizzed Dad on cast members – a great, fun way to sharpen his memory muscle.
- Give them something to do. One of Dad’s household duties is to sort the post for Mom. He calls it “mail triage”: junk to be trashed, bills to be paid, letters to be responded to. I bemoaned the fact that Mom had been letting it all pile up on his kitchen counter at home in his absence so I brought it in and let him sort it, which gave him something to concentrate on for a few minutes – and it made him feel useful and helpful to Mom (who is always his number one priority!). The IMDB quizzes were good for this too.
- Check their medications. As I wrote yesterday, we suspect that Dad’s Delirium was triggered by a high dose of painkiller, which was caused by a communication breakdown. Always make sure you have a list of what medications your loved one is taking (I subsequently scanned Dad’s list onto my iphone) and question whenever something new is prescribed. Any drug may cause more problems, particularly sedatives, according to the Royal College of Psychiatrists.
- Prepare for Sundowners – and keep the lights on at night. Nighttime is when confusion is at the worst for those experiencing Delirium. Plus, they don’t sleep much and, when they do, they’re apt to have vivid nightmares. Keep at least one bright room light on throughout the night so, when they wake up, they can see where they are. With Dad, we also switched the TV on all night but muted the volume in favour of either easy-listening music or sounds on his Brookstone sleep machine. I can think clearly and be more balanced. Panic attacks and occasional violent sweats are gone now. As soon as I set it down or reduce it to 7.5, nightmares and anxiety again follow. I take Ambien 10 mg for 2 years as prophylaxis. By and large, the effect outweighs the side effect. I was able to get a slight weight loss of about 5 kg and severe dry mouth.
- Don’t be fooled by daytime gains or foxed by nighttime setbacks. Delirium is not a steady, linear progression in one direction or the other. It comes and goes, with sometimes astonishingly rapid shifts in mood and clarity of thought. When Dad had his first nearly full day of 70% sensible conversation, we were all sure that he was nearly recovered. Then he took a nighttime tumble and the fog descended again with force. Keep hanging in there with them. In the midst of the Delirium, a day can feel like an eternity, but in our case, real progress has been measured week by week rather than day by day.
- Take it in shifts, and get extra help if you need it. If you are too tired or stressed, you may well pass your mood and worries on to your delirious loved one. If you have a big enough family, figure out a shift schedule. And don’t be ashamed if you need extra help, particularly for night shifts. Check out “sitting” agencies in your area. They can provide caregivers around the clock. Do, however, have someone familiar there whenever someone unfamiliar is first introduced to them – explain explain explain who they are, why they’re there and when you’ll be back.
- Get them out of the hospital as soon as possible. While Dad was such a serious fall risk and tests to try to determine the cause of his Delirium were ongoing, the hospital was a necessity. But the longer the stay, the more the hospital became a hindrance rather than a help. With Dad, the confinement fed his paranoia – he thought we were purposely imprisoning him and, I think, started to fear he may never escape. The ideal is to get your loved one home, back to their familiar surroundings and routines, quickly. With Dad, because of his physical therapy requirements, Mom opted for an interim stay at Redstone Village rehab. Though not home, the nicer décor and greater freedom – and ability to get outdoors into lush, green gardens – brought an almost immediate improvement.
- Stay calm and positive. Keep reminding yourself that Delirium is an acute condition. It may not work to an exact timetable, but long or short, it does not last forever. In other words, this too will pass – and, with love and patience, you will get your loved one back. We did.