Caring is often tough, but all the more so when you are caring for someone … in another country. For Day 9 of our series of ‘walk in my shoes’ blogposts, looking at dementia from different perspectives, my friend and colleague Dorothy Hall shares her story. As a highly skilled social worker, Dorothy spotted the early signs of Milou’s dementia and tried to navigate the care system in Belgium…
As a social worker with many years experience in working in the field of adult social care, I spotted the signs of dementia in my mother-in-law (Milou) at an early stage. This did not make dealing with an increasingly difficult situation any easier, in fact I think it contributed to my stress.
I anticipated a lot of the subsequent problems, but not all. One area of stress was in the complications that developed in the relationships with Milou’s close friend of some 50 years plus, and in the attitude of her only son, my husband, who did not want to accept what was obvious to me.
Milou lived in Brussels, she and her friend relied on each other for mutual companionship and support and were both in their eighties. The first difficulty was in the reaction of her friend, who felt that if Milou would only pay more attention, her difficulties would be resolved. She was convinced that loss of memory was an indication of mental laziness & not listening.
This resulted in daily phone calls to check up, cajole and ultimately bully Milou. This in turn led finally to a complete breakdown in their relationship which caused great distress to everyone.
Because I saw the signs of dementia before my husband was prepared to accept them, we did not involve services, first because my mother-in-law refused to accept that she needed help and my husband supported her by saying I was being a ‘social worker’ and things were not as bad as I thought.
The added difficulty of being so far away meant that practical support was squashed into short visits and did not build up into a regular pattern of support that could have helped Milou get into a routine, essential for memory loss.
Because my husband and his mother had lived in different countries for all of his adult life she was used to being independent of him, and we were not familiar with her daily patterns of life. We had visited when expected, the cleaner had been in to clean and we had a round of polite visits to make.
This meant that we would arrive and I look for what needed to be done, usually checking on dirty clothes hung back in the wardrobe, changing beds, throwing out stale food, shopping and cooking to leave food in her freezer that was her habit to eat. All had to be done in a short time . Milou was not used to us being involved in such basic areas of her life, she was often annoyed and defensive and protested that she was able to do all of the things we were doing.
The first difficulty was in dealing with personal care. I noticed early on that Milou had lost awareness of personal cleanliness, and sorting this out was traumatic for all of us. We ultimately managed to get her to accept a bathing service and a visiting hairdresser, but only when things had deteriorated drastically.
The next big difficulty was in managing her finances and vulnerability. She had been having home deliveries of wine and the sales man had been taking both cash and cheques for the same delivery. She was giving her cash card to a cleaner. She lost her purse and all documents in a taxi, we only discovered this when arranging for her to come to England for an extended stay and she had lost her identity card.
We arranged a form of enduring power of attorney a ‘procuration’ but she still had daily control of her money. We visited often to arrange cash, ensured all bills were paid by standing order & gave details to the bank to stop cheques to dodgy people, but could not be there all of the time. We arranged telecare alarms (ignored by mum-in-law), and had a wonderful friend in a neighbour who visited every day and e-mailed when there were problems.
We became regulars on the cross channel ferry & knew the trip to Brussels by heart. We started to go separately to cut down on our time away from home and work in England, but that created difficulties as my French was not always good enough and my husband was needed for technical repairs and translating, he didn’t want to deal with personal care so in the end it was easier for both of us to go.
We kept up monthly visits for three years, interspersed with long holiday trips to England, we spent every Christmas there for years, and were there for all of the hospital and dental visits. I had many experiences of hospital visits with Milou translating my attempts to talk to hospital staff about her condition, not having the correct paperwork because she had misplaced it, getting lost in hospitals, with her insisting that she knew where we were going, when I knew she didn’t. (Material for another blogpost)
How difficult it was to describe the deterioration of someone who had been an elegant independent woman to a healthcare/social worker trying to include her in the conversation and get her to recognise her need for help, while she protested that I was obsessed with washing and I was exaggerating about her vulnerability.
I became very stressed and when ultimately we had an assessment by a visiting social worker I was so relieved that she instantly understood the situation, and despite Milou’s protests, offered a range of services. Unfortunately as soon as I had returned to England Milou cancelled most of them apart from a bathing service. This in the end had to be enough, as she refused anything else. This kept her physically clean, and ensured two more daily visits from someone who would report back any deterioration.
One of our concerns was the attitude of younger people in her apartment block. Younger professional people were replacing older residents. There was an expensive security locking system on the entrance door. Milou used to tie the door back to a radiator in the hall when she went in and out, she took to going downstairs for post and utilities in dirty night clothes. New residents started to complain to us. She would not consider moving into sheltered accommodation. Her only wish was to stay in her own home.
This experience has made me aware of difficulties faced by people I have dealt with from different cultures and with limited use of English. We were fortunate in having a Consultant Neurologist who spoke English and gave us his e-mail address after she had cancelled her appointments with him, because she saw no value in seeing him.
Just when we don’t have to go anymore following her unexpected death, and after much confusion along the way, we now have a good understanding of the Belgium medical, Mutual system, and adult social care process.
How I sympathise with other people who don’t understand the English system! We don’t appreciate how much of our bureaucracy is an integral part of our pattern of life.
We experienced lots of kind people, a sensitive medical care system with easier access to services than in England, and a less adversarial division between health & social care. We have a terrible sense of loss along with the relief of not having to deal with a worsening situation.Dorothy Hall was a social worker /manager in Coventry for 30 years and is very experienced in all areas of Adult Social Care. Now an independent Practice Educator for Coventry and a Mentor for Warwickshire Social Services for the ‘Enabling Others’ Post Qualification course, and has been an independent advocate in Continuing Health Care.
A highly skilled Whose Shoes? facilitator, Dorothy provides independent support in adult social policy & legislation, running focus groups and workshops.