Three weeks ago, on Day 9 of this “walk in my shoes” series looking at dementia care from different persectives, my friend and colleague Dorothy Hall gave a moving account of caring for her late Mum-in-law in Belgium.
This proved to be a very popular blogpost so Dorothy has written about the practicalities of navigating care systems and hospital appointments.
When Dorothy sent it, she asked me “Do you think it is too confusing?”
I said “Yes, far too confusing – but that is the whole point!”
Now, where did we leave that car…?
A tale of two hospital visits
Since my mother-in-law Milou had been losing her memory, my husband and I had been visiting her monthly in Brussels to support her to live in her own home. This was augmented by accompanying her on hospital, dental and other medical appointments. To try to share this out we tried going separately, this didn’t work for several reasons one being that my Franglaise was not up to the job. A lesson for all who try to communicate with people in official positions in a different language.
One week of fraught hospital and dentist appointments brought home to me the awful reality of not being able to be in control of what is happening to you because of language problems, unfamiliarity with systems, dealing with someone who has forgotten where to go and what to do but trying her best to not let on, and me trying to respect her dignity and not initially insist on doing something else. With the added complication of being accompanied by Milou’s friend whom I thought did know but who also got confused when stressed.
The week started with two hospital visits planned well in advance. I had been frequently to one hospital and knew where to go and what to do. This was to be followed two days later by a visit to another hospital that I had never been to. The first hospital had wheelchairs parked in the reception area and I knew how to access them, my mother-in-law could walk a limited distance and did not have her own wheelchair.
The second hospital was to a dental clinic and Milou had written instructions from the referring dentist. I had kept the paperwork for the first hospital visit as experience had taught me that Milou put details of hospital referrals in a safe place and they were never seen again. Milou had received the written details of the dental Clinic in my absence.
The confusion began on the first visit, both ladies insisted the clinic we were going to was at the location of the second hospital visit due later in the week. This visit was to a big general hospital, to a clinic on floor minus 1. The second visit later in the week was on floor plus 4 of another hospital.
Visit to the first hospital was accompanied by much fraught discussion about which floor to go to, with both ladies arguing between them about where to go and asking anybody in sight to check. Helpful onlookers gave me long instructions, largely misunderstood by me; short instructions are better for limited understanding!
We managed the first hospital because I did know where we were going – to floor minus 1. The second hospital visit was a complete disaster, as the visit was complicated by friend insisting on driving us there ( aged 85 years in central Brussels). I knew the appointment was a clinic on floor plus 4, but could find no paperwork to ask directions with if we got lost, as Milou had misplaced it.
The hospital had an underground car park. We parked on floor minus 1, and managed to get to floor plus 4 for the appointment. The complication was when we deviated from a straight up and down lift and went to the café for coffee after the appointment. We were then had to use a different lift. Another complicating factor was that going from the car park straight up to the clinic bypassed the reception area and any helpful wheelchairs.
When going back to the car park Milou’s friend insisted her car was parked on car park minus 4,not minus 1, I knew it was not. Milou by this time was exhausted, confused and could not stand for long. I insisted we went to car park minus 1 – we went, but from a different lift and could not see the car immediately, friend said she would go to floor minus 4 to look. I said I would take Milou back to ground floor to sit down while we established the where-abouts of the car.
We went back in the lift. Milou went first, into a crowded lift, but at the ground floor we got separated. Friend and I got out of the lift, the doors closed with Milou stuck at the back with lots of strangers.
Panic, this was a big hospital with six floors up, with banks of four lifts in bays off long corridors. I had no idea how I would find Milou if she got out on any of the other floors, I imagined she would get out on the next floor and had no confidence that she would know which floor we had got out of the lift. Friend in the meantime was panicking that her car was lost and wanted to go back down to minus 4 of the car park.
We compromised I said I would stand in front of the lift and hope Milou re-appeared, friend went down to minus 4 of the car park.
Milou did re-appear helped by an occupant of the lift who saw what had happened and realised Milou did not know what to do. However she was exhausted and upset, there were no seats in sight; hospital corridors are not friendly places for confused people with limited mobility.
We walked to the nearest open door which was a radiology clinic with a receptionist inside the door. Milou ignored her and made for a chair. I explained in best French what the problem was, but had to go back to the lift for friend who I knew would not be able to find her car, and would not know where we were.
I stood strategically at the intersection of the corridor where I could see the lifts and the door to the clinic, but could not see Milou. After approximately half an hour, with no sign of friend, the clinic receptionist came to tell me in French that she was worried about Milou and would I do something. I was in process of trying to ask her if they had security guards/ hospital porters who might help, when friend appeared fraught and upset , convinced her car was stolen.
I then had to go to look for the car myself , knowing it was somewhere on floor minus 1 ,with two ladies too upset and confused to help and too exhausted to walk far. Clinic receptionist was not helpful and retreated behind her desk. I left both ladies in the clinic waiting room and went to find the car. (What hope for a dementia-friendly town when even the hospital staff don’t understand.)
I discovered that each car park floor had two levels accessed by two lifts, when we had parked the car on floor minus 1 we got into a nearby lift, coming down in another lift we got out on a different level of floor minus 1. The floors had identical parking arrangements.
Back to the clinic, not acknowledged by the unfriendly receptionist, who was then discussing my ineptitude in a loud voice with another receptionist, the waiting room was full of interested observers! I left thankfully for a fraught drive with an upset car driver.
I have to say my husband, a fluent French speaker, did the follow up appointment, and we got our own wheelchair.
Dorothy is an Independent Social Worker and practice educator who regularly facilitates Whose Shoes? workshops.