My mother with Alzheimer’s: not a unique French story
The perks of sharing: A French woman & a lady from Melbourne meet on holiday in England
A week ago, as I was visiting my son in Norwich, England, I made an unexpected new friend at the Bed and Breakfast where I was staying, a lady from Melbourne, Australia. Every day we would sit in the same dining area and engage in a conversation as we had our ‘very English’ breakfast (therefore much more nutritious and taking more time than a French one).
Casual chitchat among tourists staying at the same place usually doesn’t go beyond the borders of its walls. This time it went differently.
Finding solace – sharing with strangers
We spoke about our respective mothers. And found out that they are both stricken by the same degenerative disease: dementia or Alzheimer’s… Whatever the name, our mothers have both gradually lost their memory and are incapable of taking care of themselves anymore.
Knowing this made us share the ordeal we, as both caregivers and daughters, we’re going through. This disease has no particular language or place, it’s universal, and our telling to each other our experience and what it implied – the huge responsibility, including the guilt, the considerable amount of time spent, the worries, the struggle, the solitude, the devotion, the constant evaluation for what is best for our mothers – meant we connected quickly and in a very emotional way.
It felt extremely comforting to hear the same words of empathy uttered by another woman of my generation who usually lives poles apart.
It was never planned
We hear everywhere that ‘boomers’ in the Western world are supposed to be blessed because they lived their younger years and professional life in a prosperous society and that on the eve of retirement, with an empty nest, a still fit body and a sharp mind, they’re expected to have the best time of their life. Well, a tiny detail is missing from this near-perfect picture. If life expectancy has increased to over 80, so has the rate of elderly people with dementia.
At this stage, we, the ‘boomers’, the next of kin of the older generation, the lucky ‘60 is the new 40’, are directly held responsible for our parents. in France, it’s also the law. We normally do not need to be reminded of the law to take care of our parents, but the love and sense of duty we have for them and the normal payback attitude that ensues may gradually become a burden, if not a nightmare.
To stay at home
Six years after my mother was diagnosed with this degenerative disease, I was almost having a burnout.
As a matter of fact, the breakfast sessions with the lady from Melbourne had a salutary effect. I could envisage my lassitude and feeling of helplessness not as bad luck anymore. We even admitted we had in common some hard and cynical truth: “the people who might attend our mothers’ funeral one day, we confessed, had long-buried them already”. I sometimes wonder if what makes us human and therefore sociable is first and foremost our capacity to remember. No one is to blame in this though. It’s but a fact.
Of course, in a country like France that prides itself on its welfare and free health system, there’s a whole array of artillery deployed (state institutions, associations) to take care of the elderly.
My mother is no exception, she benefits from such services.
Twice a day a caregiver comes to dress her, wash her, give her medication in the morning and change her into her nightclothes in the evening. She has two weekly physiotherapy sessions, all this covered by the French Health Insurance ‘La Sécurité Sociale’ and she has a cleaner too.
But this is the tip of the iceberg of the attention she needs.
I do the rest, I‘m the boss, I make the decisions, do the paperwork, make sure this little enterprise works well (always on the brink of dysfunction), take her to the doctor, do the food shopping, buy the clothes, do the washing… I say she is my Benjamin Button, my old baby, in my best effort to find figures of speech to avoid feeling sorry for myself.
Or not to stay at home: the ultimate heart-wrenching solution
I hear it from my close circle of family and friends: “you should consider a nursing home”, “you can’t keep on exhausting yourself like that”. In France, places which welcome such patients are called EHPAD (Etablissement d’hébergement pour personnes âgées dépendantes).
They have long waiting lists, and even though one mustn’t generalize what are often rumors or exceptions, they suffer a not so good reputation: the staff is underpaid and outnumbered, patients are given medication to sleep and are put to bed at 5 pm, some articles report testimonies of ill-treatment… and since my mother still recognizes me and tracks the date every day on her daily newspaper, begs me not to abandon her each time I leave her house, this is not a possible option… as of today.
The silver lining
If I’ve learned one thing since my mother’s decline, it is this: that I should take one thing at a time.
However, this is not the only lesson.
Indeed, despite the few sacrificed bits for a more comfortable, carefree and entertaining life I could aspire to have otherwise, this unplanned twist of fate also allows me to mark a pause, to reflect on my life and assess the new direction I am taking. All this would not have been possible without my mother’s help, presence, disease.
I am therefore all the more convinced that I am doing the right thing.
This is also a strong statement upon which we agreed: me and my new friend, the lady from Melbourne.
Whilst Jacqueline speaks of her personal experience she is very interested to hear your thoughts and views and she urges you to share any experiences you may have had. Let the discussion begin below in the comments section.
1. René Magritte via wikipedia
2. Christophe Schmitt via Votre Mulhouse – EHPAD
3. Le bien être chez soi – via Securite-Sociale.fr
5. Le Point – magazine cover via Lepoint.fr
Thank you for sharing this deeply personal story Jacqueline. I am so pleased that you and the “lady from Melbourne” crossed paths and that you were able to share in a way that only someone going through the same situation could really fully understand.
Whilst I haven’t had to care for someone with severe Altzheimers I have taken on the responsibilities for financial matters and coordinating care for my elderly father whilst trying to support my mother and ensuring her physical and mental health.
I have no words of wisdom as to how to manage the immense physical and mental strain that leads to burn out nor the guilt that goes with it. It starts to become another type of normal for those that are in caring roles. I hope the comfort you found in sharing with this lady can continue to carry you through at this time. Je t’embrasse très fort
Thanks Kathy for these words of wisdom and comfort. A few decades ago, I would read about young mothers trying to pursue a professional career against all odds, now is the time when I want to hear about ‘young retirees’ trying simultaneously to have a life and caring for their elderly parents !
Hi Jac: My mother is in her 5th year of advanced dementia. She is almost completely immobile and I am physically unable to manage her daily care. It is cruel for a good life to end so miserably. Neither of us would have envisioned this in our wildest dreams 18 years ago in KL!
Ann, sorry it took me so long to answer you. I also wonder for how long I am going to be physically and emotionally able to manage her care as I am ‘only’ 20 years younger than she is and already in the senior citizens category! I am just taking one thing at a time and trying to still have a life of my own which is not the one, as you rightly say,I would have envisioned in the early 00s. Do you ever return to Richmond? we should organize a reunion with Teri there. I hope you and family are all right.
Hi dear Jacqueline. This is a very touching article. I’m trying to copy it and post it to my children – as they are now their father’s carers. He suffered two stokes last year and they do all they can for him to have the quality of life he deserves.. I’m sure they could identify with a lot of what you say.
Apart from that – I would love to reconnect. Love. Shelley
I’m so moved Shelley that you reached out to me this way. And so sad about Brian’s condition. All my love to you and family.