The Dementia diaries have had some unexpected consequences. Having written down what I discovered when caring for my demented mother has meant that much of the useful stuff was committed to memory. As I am incapable of minding my own business, I have found myself answering musings or direct questions and occasionally been approached by a new carer who has heard about the diaries.
Just at the start of the pandemic, a friend on the Christmas card list, who knew about my mother and who had had a similarly difficult mother, rang me for my opinion of her husband, who was doing and saying strange things.
The upshot was that she was added to the list and for the last couple of years I have rung her once or twice a week to support her through caring for her husband, who has Alzheimer’s. She herself was in remission from lymphoma and not exactly young but highly intelligent and coping well with all the hurdles that are placed in the way of the carer on almost a daily basis. She found herself drowning in paperwork but tackled all the letters to doctors and hospitals, methodically. She found a release and time to herself in gardening.
In November an adult son who had sold his house but not yet bought another, moved back in with his parents, temporarily, bringing his dog, who was a handful but a distraction.
It all seemed to be going as well as could be expected. I rang her yesterday to be told by her son that she had just died of a brain aneurism.
If you are the principle carer, what is your plan B?
I have frequently written about the importance of caring for the carer. As you know, I have had cancer twice, each time after years of caring for a demented family member, I think cancer is my response to stress.
What if your response to stress is something less obvious? What if the stress of caring is affecting something inside of you, explosive in nature but hidden?
Just putting the cared-for into a care home is not the answer. It has to be funded and the funds have to be administered.
My father’s cousin’s wife, who was childless, arranged for a solicitor to administer her affairs. He sold her house to finance her care, ringing me, a possible inheritor, to tell me his actions. I naturally gave my blessing and together with cousins received a little keepsake – a little snuffbox with a newspaper clipping. It is on the desk before me as I write.
If you are the demented person and have no one to care for you but have a house or possessions that will finance your care in a place of your choosing, selecting the solicitor as soon as you feel able after diagnosis, will buy you time and choice. As the world turns, most solicitors will not be surprised to be asked, this is a common task and they will have a scale of fees already. You can search online for specialists, or ask locally.
My friend who died, found the travelling to the special hospital with her husband very stretching. She did not drive and was dreading the day her husband’s licence was revoked. A local friend who had to go to the next large town to a special hospital for cancer treatment used the local taxi firm until she had made friends with one of the drivers, who was kind and concerned and drove her door to door. If you are researching solicitors, locality might be something to consider. Someone established and a bit more expensive could be preferable to distant cost cutting.
If you have other family members, perhaps those who have absented themselves from the caring, they may need to know the facts in a rush. I carried with me, throughout my mother’s care, a huge bag with folders with absolutely everything, from medication, to hospital appointments to carer’s phone numbers, friends who called to her house and who they were, and the contact details of the window cleaner; the lot. I did this after she was whisked into hospital the first time and they asked what her medication was and what she was allergic to, and I didn’t know the answers.
Come to think of it, the arm I carried the giant bag on was the one that broke, so maybe you could put the heavy files on a mobile or similar, though not if you are as adept at losing stuff on a mobile as the OH.
At the very least you need the facts written down and put in a place, ideally one where the demented person cannot find them and turn them into confetti (yes this happened) or hide them. Then you need the place to be easily discoverable by the family member or at least a one word clue if you are run over by a taxi taking someone to an appointment.
If you can gasp: ‘Look in the fridge/ desk/ sock drawer/under the clock/ saucepan cupboard before conking out, you’ll have contributed to the smooth running of the universe and much more importantly, the continuing care of your liked one.
And that, as you contemplate the tyre tracks across your suddenly flat stomach, but not in a good way, will be a source of great satisfaction and, upon your arrival in Heaven, you will be directed to the queue for those who have done their very best and are everyday heroes.
Where you will find my friend, who I shall miss.