Caring for an elderly relative can be extremely stressful and upsetting. I feel strongly that a more holistic approach is required rather than a collection of professionals and their coordinators each trying to manage situations in apparent isolation of one another.
I speak from experience. My mum, is 88 and recovering from a stroke. She is housebound, reliant on private care visits to help her manage at home. I’m Mark, her only son. Luckily my circumstances allow me to be a regular carer for Mum since her stroke. Actually, what takes most of my time is not the hands-on care as such but the constant medical coordination, communication and fact finding I have to undertake on Mum’s behalf. At times this can be frustrating and very upsetting especially when I’ve spent my working life helping to resolve very similar issues that exist within many organisations and then discovering I’m powerless to do anything to improve matters for her.
It was mid March 2013 when I took the call from Mum’s day time care provider.
“Mark, we found your Mum this morning on the floor in the bathroom, she’s ok but keeps counting from one to five, is that normal?”
“We’ve called an ambulance because the carer can’t stand her up and she needs to be checked over. We’ll call you back when we know more”.
I was in North London at the time and just about to head into a meeting for an hour. I left my phone on after concluding that she was in safe hands and decided to head straight back home when I’d finished. Besides, Mum falling over had become a bit of a regular occurrence and I was getting used to the calls and the events that followed.
Just as I was heading to Queen’s Park tube station, and about to call for an update, my phone rang. It was a paramedic who explained that they were going to take Olive to hospital for tests. My fears were quickly confirmed when I arrived at the hospital an hour or so later to find Mum on the stroke ward, counting from one to five.
Mum is out of hospital now and at home. Hit hard by the stroke she has a weakened right side, her mobility is very poor, and her short term memory and dexterity massively impacted. She has two care visits a day, mornings and afternoons, with an evening visit by me to prompt medication and make sure she’s ready for bed.
I used to believe that medical care for the elderly was a well trodden path and Mum would have coordinated medical support at home, organised by her GP. I don’t believe this anymore. She hardly ever sees her GP; we seem to have more contact with the surgery receptionists and administrators than we do with a Doctor.
Thankfully, and by chance, I was introduced to a Community Matron at the start of 2013. Without her counsel and assistance I don’t know where we’d be now. She is the only medical professional who has a grasp of all Mum’s ailments, is willing to talk to me and will regularly visit Mum at home. However, even she sometimes struggles to understand who is doing what and where responsibilities lie for Mum’s health care.
Mum also has a small collection of age related conditions: osteoporosis, anaemia, spondylitis, hypertension, a hiatus hernia, impaired kidney function and an over active parathyroid gland. This gland, secretes a hormone that manages the levels of calcium in the body. As a result she needs to take more medication twice a day and have regular blood tests to monitor her calcium levels.
Mum hit the medical radar after her fall and her admission to hospital on Boxing Day 2012. Let me try and illustrate how Mum’s world has been turned upside down since then…
Mum’s GP rarely sees her. I recently took a call from the lead GP at the surgery asking me “why is your mother having all these blood tests”. The surgery seems to find it hard to read and act on letters received from hospital consultants and regularly allow Mum to run out of any new medication that wasn’t prescribed through the surgery. I often wonder what would happen If I didn’t get involved, would anyone at the surgery notice before it’s too late.
Following her stroke, and discharge from the district general hospital Mum was admitted to a community hospital to complete her recovery before going home. Mum now attends a post stroke clinic at fixed intervals to see her stroke Doctor. Three visits so far and each time she has seen by a different Doctor. The hospital have also assigned a Stroke Nurse to regularly visit mum at home. At her last visit they noted low blood pressure and subsequently requested Mum visit them for a blood test. The clinic appears to operate in isolation from the hospital consultants and GP. It’s been four weeks since Mum’s last visit and we’re still struggling to find out who is following up on her low blood pressure. Since Mum’s fall and admission to the district general hospital on Boxing Day 2012 she is seen regularly at a clinic for the elderly. Four visits so far and each time she has been seen by a different Doctor.
Having been diagnosed Mum does not have to return to see the surgical consultant again regarding her parathyroid gland; there is nothing the surgeon can do. The Consultant prescribed a drug called Cinacalcet to keep the gland in check and wrote to the GP requesting that regular blood tests are taken and calcium levels checked. Mum’s first course of tablets dispensed from the hospital soon ran out. When I contacted the GP’s surgery I found that the letter written to them by the consultant had been ignored.
Mum had stopped eating because she couldn’t swallow properly and feared her food wasn’t going down and she might choke. We managed to get the GP to visit Mum at home and he referred mum to see a gastro consultant who then request an endoscopy and ultrasound to see if anything was wrong. The endoscopy was clear but the ultrasound identified a possible mass on her pancreas, she now has to have a scan to help confirm what this is. At our last visit in September 2013 we discovered that her renal function was also declining and the consultant now wants to consider how Mum’s other conditions might be playing a contributory role. This is the first time in ten months that a Doctor has stepped forward and said that Mum is now her patient and she is taking responsibility. I had to hold back a tear.
After a chance introduction to the Community Matron we now have access to an Integrated Case Management Team. This team, particularly the Community Matron, tries to keep me informed and helps to make necessary referrals for Mum. In return I keep them informed of hospital visits and concerns I have that aren’t being dealt with. For example whilst the GP sent Mum for an endoscopy the Community Matron referred Mum to a Speech Therapist to see if she had a post stroke swallowing issue affecting her eating. The conclusion was that she had slight dysphagia (impaired swallow reflex) and some psychological issues caused by a fear that food would get stuck, or go down the wrong way, and she’d choke. The team then referred Mum for a home visit from a Nutritionist and between us we have created a home cooked soft food eating plan. If I hadn’t instigated this dialogue with the Community Matron then I fear Mum might not be with us now.
You’d be right to think that Mum is getting all the medical attention she could possibly need. I can’t argue with that because on the face of it she is. But there’s the saying isn’t there “too many cooks spoil the broth” and it couldn’t be more true for Mum over the last 10 months. Everyone has her best interests at heart but they don’t see the whole picture for her and certainly find it hard to communicate with one another and with me for that matter. They insist on communicating with Mum but she has great trouble remembering what has been discussed. Having attended many sessions with Mum I can see that she struggles to hear, and sometimes to understand what is being said to her and often will not answer the questions being asked. For example, I remember the Nutritionist asking “How is your diet Olive, are you eating well?” Mum replied “yes, all right”. The fact that mum had probably eaten the equivalent of two slices of toast in 14 days wasn’t mentioned. Luckily, and by chance, I was with Mum during that particular visit.
Something has to change
I’ve really only skimmed the surface of events over the last 10 months but I’m sure you can see what a difficult time this has been for a confused and frail elderly lady. Visit after visit to the hospital each causing huge anxiety leading up to the arrival of the ambulance, needle after needle taking blood and multiple Doctors that can’t be heard or easily understood. For me this is further compounded by no clear medical lead, and the apparent inability Doctors have to share blood test results and patient notes between hospitals. The cost of all this inefficiency, but it must be huge.
The Integrated Care Team (also called Community Treatment Team) certainly has the potential to provide holistic patient care for the elderly. Unfortunately, the team doesn’t appear to have the necessary authority to bang heads together and deal with what I can only assume are professional egos unwilling to let go and delegate responsibility for fear of losing control, or simply can’t because they are hamstrung by policy, procedure and systems. Until a bridge is built between between the community care services and the medical profession I’m afraid nothing’s going to change. Perhaps work is already being done behind the scenes but it’s certainly not present in our field of vision.
Have you heard the phrase “if it ain’t broke don’t fix it”?
Well, something’s broken and certainly needs fixing; elderly people deserve more
Mark Gray blogs at