Pam's Delirium Journey Part 2 - The Recovery
Dec 27, 2022
In my previous post I shared the first stage of my Mum, Pam's delirium journey and explained what delirium is and what the signs and symptoms are that you could identify in a loved one. I'll now share the next stage of Pam's post-hospital delirium journey and also what you can do to help a loved one recover from this terrifying but temporary condition.
Pam's Post-Hospital Delirium Journey
Although it was essential that Pam went to hospital to be examined and assessed she was highly agitated and uncooperative the entire time due to her condition. She was violent towards the medical staff and was constantly trying to escape. So when she came home from hospital on the 8th December 2021, her behaviour was actually worse than when she went in and was comparable to that of a raging, rebellious toddler. This was extremely challenging for me and I was incredibly apprehensive about how to handle her. Thankfully she was never violent towards me but there were definitely times when she was so angry and agitated she was close to it. I warned her repeatedly that if she was violent I would call the police and she would have to go into a care home. As I write this I can barely believe that I had to say that to my own Mum who was usually so kind and calm but it was necessary at the time. At first she was so angry she said she could never forgive my sister and I for putting her in hospital and she wanted to live somewhere else. I'm not exactly sure what she had in my mind but reality is very distorted in delirium patients. She was so deconditioned from not moving in hospital and was losing weight and muscle mass, possibly from the mediaction. She was normally around 65 kg but was 62 kg when she returned home and continued to drop to 47 kg at her lowest point, which was a huge concern. She was taking diuretics and anti-psychotic medication and her doctor advised me to cut her dose of diuretics which I did. I'm not sure how much of it she actually took, as she told me a couple of months later that she had a confession to make. Despite my extreme vigilance, she had held the medication in her mouth and then spat it out while I wasn't looking! She said it was so very stressful for her doing this and I would find most of it on the floor and in indoor pot plants! I did find sone of it but you never know with delirium patients what's true and what is imagined. They can become cunning, manipulative, completely self absorbed and unpredictable in varying degrees. No two cases are exactly alike which also contributes to making delirium hard to diagnose.
Learning To Move Again With Pilates
Fragile, but determined, is how I would describe my Mum in these post hospital days, not only mentally but physically as well. On her second morning back home she woke up and couldn't walk. She had extreme pain in one foot and couldn't put it to the floor. It was a mystery as there was no visible reason for the pain but it could have been a side effect of the medication. She insisted on crawling from her bedroom to the lounge room each day where her mat was located to fo do her Pilates exercises. Fortunately, she remembered all her exercises and I was able to guide her through a short session each day. I helped her to do foot exercises too as her feet were so weak from the sedentary hospital stay. Three days later she woke up and said "My foot is better!" She hopped out of bed and started walking. This was such a relief on one hand but on the other hand she was mobile again and I couldn't let her out of my sight. Some days she would cooperate and other days she flatly refused to do her exercises as she was extremely tired. I took her out in the car to local parks. Firstly to re-orientate her with local surroundings and secondly to improve her ablity to walk. We started with 5 mins, 10 mins and eventually she worked up to 15 and then 20 min walks and beyond. Sometimes she enjoyed it and other times she grumbled and complained the whole time. Sometimes she cried. After reading neurosurgeon Sanjay Gupta's book "Keep Sharp" where he describes exercise as being far more beneficial to brain health than any medication known to man, I increased Pam's exercise sessions as much as I could. In mid-January I spoke with Pam's Doctor and told him about my Pilates based rehab program for her. I told him I wanted to replace the anti-psychotic medication with movement & PIlates, based on the findings in Gupta's book and he agreed with that approach. He said that as long as she is improving, which she was, then it would be fine as the medication was only a trial. He cautioned me, however, that if there was any downturn to re-start the medication straight away which I agreed to do. Fortunately though, this never happened and from then on, she relied solely on Pilates, walking, supplements and a high quality nutritious diet for healing. I read about activating the non-dominant side of the brain to promote healing and twice daily I would throw a ball to Pam and she had to catch it with her left hand only, as she is right handed. This was almost impossible for her at first, but very quickly she improved to the point that it was too easy for her. So then I did a combination. I would say right, left or both and then mix it up so she really had to focus on which hand to catch with. We also played the mirror exercise with arm movments. My aim was to keep her moving and keep strengthening her as much as possible to benefit both her mind and body.
Disruption to the Sleep/Wake Cycle
Delirium patients have a highly disturbed sleep/wake cycle and Pam had disturbed sleep pre-hospital but post-hospital it was at crisis point. Apparently, she barely slept in hospital and the first night home, she slept like a log for 9 hours but from then on it was all over the place. Unfortunately, she was awake at all hours of the morning from midnight onwards. She paced the house and used the computer to write disjointed emails to friends. She also placed online Coles orders for hundreds of dollars worth of junk food that I would then have to cancel. I was in a state of hypervigilance so would sleep lightly and wake up at the slightest sound as I never knew what damage she would be doing. Sometimes Pam would just cone into my room during the night, turn on my light and start talking to me like it was the middle of the day. She had completely lost the ability to tell the difference between night and day. I lost just as much sleep as she did and after a few weeks of this she was beside herself. Delirium patients should never be woken and she was sleeping for a couple of hours in the afternoon and sometimes in the morning too. Her sleep schedule was a mess and like anyone without adequate sleep it was taking a toll on her already compromised health. She tried taking Melatonin several times but this had a bad effect on her and made her drowsy the next day and didn't really improve her ability to sleep. It wasn't until early May that she really slept well again which is 5.5 months of poor quality sleep which was a catch-22 situation. Good quality sleep is necessary to heal the brain from delirium but delirium disrupts the sleep wake cycle, so it's a very frustrating situation.
Pam Outsmarts Me & Escapes
Considering Covid was still a major issue at this time, I was avoiding shops and taking Pam anywhere crowded to protect her from getting infected. During delerium she believed that only one person had died from the virus and that it didn't really exist. She wanted to go to shops and restuarants all the time and it was a battle keeping her inside. On the afternoon of the 11th January 2022 Pam disapperared. I knew she was up to something but by now I was exhausted and she was one step ahead of me. She wanted to take my car but was obviuosly in no fit state to drive, so I hid the keys. Somehow she quietly slipped out the door and I saw her from the window standing at the letterbox. I called her and by the time I got there, she was gone. I ran around the immediate streets but she had vanished. I called her phone and she answered and told me to check the bathroom, she was in the shower. I knew she wasn't. I called my sister and she came immediately and we combed the streets in separate cars looking for her. She wasn't answering her phone now and time was ticking away towards nightfall. By 5.30 pm we called the police who wern't at all happy to be dealing with such a case. They said we should put a tracker on her in future and they would help this time but not again, which was very concerning. Around 6.00 pm an elderly neighbour in a side street came to see what the police were doing and it turns out Pam had approached that neighbour for a lift to Five Dock shops. She was just out of the shower and couldn't take my Mum there and didn't realise she had delirium. In frustration, Pam left and caught a taxi to the shops with cash she took with her, giving the taxi driver a $50.00 tip for a $10.00 ride! She said she walked around alot and then bought an object at the discount store, which we discarded because we never worked out what it was. She then ate at the sushi train. She called me on her walk back from the shops as it is a long way and said she wanted a lift. The police officer picked her up to scare her and she was like a caged animal. She couldn't see what the fuss was about and was angry we had called the police. She was missing for about 2.5 hours and this was the low point as soon she would soon show an improvement.
Pam Shows Signs Of Recovery
Despite being told this was impossible at such short notice just before Christmas, my sister organised a geriatrician registrar from Concord hospital to asses Pam in her own home on 21st December 2021. As she was still in a bad mental state at this time we wanted to establish that delirium really was the issue and rule out the need for a psycogeriatricain. The Doctor who I'll call Dr G was incredibly patient, understanding and very skilled with older people. He talked to me privately for 30 minutes and then assessed my Mum for an hour and a half giving her all kinds of written tests and asking her questions. Despite me "coaching" her before his arrival she couldn't tell him the day of the week, the date or month of the year but she did know it was summer and 2021. She named the Prime Minister and the Premier but when asked about her early life she said she studied Pilates at University and spoke French fluently, which is my story not hers, so she was still very confused. She also told him calmly she would like to pour boiling water over his hands. This was something she said regularly to me and part of her confusion. However, based on all his tests Dr G also agreed with doctors from Prince of Wales Hospital that Pam would make a full recovery. He also concluded she had prolonged delirium because it was going on for so long. It wasn't until the 14th Jabuary, that Pam woke up and said she was embarrassed. When I asked her why she said she thought she may have been saying things that weren't true. I was ecstatic as this was the first improvment we saw, two months after she first fell into a confused state.
Pam's Dentist Sheds Light On The Situation
On 18th January 2022 Pam went to her amazing dentist as a tooth had broken and partially fallen out a few days before. When she saw her mouth she was shocked because she had a lot of decay and removed the stump of the broken tooth and asked her to get full dental x-ray. Pam had always had 6 monthly dental check-ups but due to Covid, she hadn't had a dental check-up for 2 years and now she was paying the price. Having dental work can be uncomfortable at the best of times but when you have delirium, it's traumatic. Pam coped well with the extraction and we did all the right things afterwards to help her gum heal. Before we could return with the X-ray, she had another 3 teeth break off! When the dentist studied the X-ray she saw that she had a massive infection in her gum which she concluded was also a contributing factor to her delrium.
The Recovery Is Not Linear
The first sign of recovery occurred on 14th January 2022 and continued until early May 2022 and it was not a linear journey. There was progress for days and then back tracking again. It was like being on an emotional roller coaster. What it seemed like was all the scrambled parts of Pam's brain were coming back together piece by piece and sometimes the pieces were in the wrong place and would scramble and come back again this time in the correct position. Pam told me throughout this ordeal that I was a saint which I thought was very sweet. It turns out she really did think I was an ordained saint in the Catholic Church, St Joanne. Considering we aren't Catholic this was even stranger. She thought that I would have people lining up to do Pilates with me because of my sainthood. When we went on walks I wore a cap and she told me recenlty that she could see the word Saint written on the back of my cap, which it isn't. At the end of April 2022 she actually googled information about my sainthood because she still wasn't sure and didn't want to ask me. Not surprisingly, she didn't find anything which confirmed to her that it was all part of the delirium. I'm definitely not an ordained saint! As you can imagine, the world a delirium patient lives in is their reality even though it isn't real so coming out of delirium and back to reality takes quite a lot of adjusting for both the patient and the family. To see what Pam was like during delirium and how well she has recovered can only be described as a miracle which we are extremely grateful for. Early in her recovery she tested herself by preparing my income tax which is quite complicated as I have an Airbnb property in addition to a Pilates membership website and 1 on 1 Skype Pilates sessions. At first she noticed her brain was very slow but she perservered and completed it successfully. It was checked and verified by my accountant and this gave Pam the confidence to get back to all her usual activities. Here are some FAQ:
What Is The Difference Between Delirium and Dementia?
Delirium occurs suddenly without warning, is a temporary condition and is characterisied by confusion and a complete change in mental state with difficulty concentrating.
Dementia is cognitive decline that develops gradually and progressively worsens over time and impairs the ability to remember, think or make decisions. It's a permanent condition.
What Is The Best Treatment For Delirium?
Delirium patients benefit from being in familiar surroundings in a calm, quiet environment.
They need to eat a diet of highly nutritious food that will help their brain heal including plenty of fresh fruit and vegetables and oily fish.
Pilates, exercise & movment
Anti-psychotic medication - this is very useful in emergency situations, but is contorversial for ongoing treatment of delirium as it may benefit some people but can actually make others worse. Some doctors I spoke to considered it a "trial" for Pam but others said it was essemtial. It's still a grey area that needs more research as does the condition of delirium in general.
Pilates, exercise & movement
Plenty of rest and sleep whenever possible
How Did You Get Through This Period As A Carer?
It was enormously chalenging for me and I haven't listed all the daily difficulties I faced due to Pam's delirium behaviour because It would fill 5 blog posts! I got through it with a lot of support which is essential when you are a carer to avoid carer burnout. I had support from my sister, my Christian faith, Carer Gateway who provide an incredible service and provide free counselling to eligible careers with very experienced counsellors. I also had therapy with a therapist privately. all of these sessions were on zoom.
Pam is still walking and doing Pilates for 1.5 hours each day and is extremely passionate about maintaining her health and fitness. The photo above was taken yesterday and as you can see, to be able to do Plank at 81 years old is quite an achievement. If you have any questions about Pam's story email me at [email protected] If Pam hadn't already been trained in Pilates her recovery would have been so much more complicated. I honestly don't think she would have had such a wonderful recovery. If you would like to start Pilates with me click HERE to read about what options I have available. I'd love to help you keep your mind and body healthy as you age!
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Learn more about what sort of people benefit from Pilates and how it can help you too. I separate the myths from the facts and share actual case studies of my clients who have achieved life-changing results from my unique Pilates program.
