One of the features of modern life is the effects wrought on a body and mind by modern medication. The last few hundred years in the West and hundreds of years in the East have seen the ills of the body and mind being ameliorated or potentially cured by the ingestion or absorption of substances derived from plants or animals or synthesised by chemicals.
As the list of non-food items we ingest grows, so does the list of allergies we suffer from. Drugs and medication of many varieties can have dramatic effects on us. If we are compos mentis and have been prescribed a drug which causes an allergic reaction, or an extreme reaction, or an unexpected side effect, we may notice this and report it, causing the dosage to be changed or a different medication altogether tried.
As you know if you’re a regular reader, I spent the last decade fetching up in hospital very frequently. One of the first questions is the one about what it is you are allergic to. When I broke my arm so spectacularly and was swimming in an ocean of pain, I found it really difficult to answer the question, despite having been asked it routinely in the same hospital on numerous occasions, on which I had previously trotted out the well-rehearsed short list.
The same situation surrounding a demented person with a dodgy memory, an inclination to react aggressively to unfamiliar people or rooms and a long term, tiring illness, means that the patient may be taking a medication which does not agree with them for a very long time before this is spotted. They can’t tell you if something they are taking is making them feel odd because they feel odd all the time.
It is getting increasingly difficult to talk to SMIL because she has a tendency to put herself to bed after every meal. When I ring it can take up to half an hour to actually reach her on the phone. Increasingly I never get that far, as someone in the office will go off through the building only to return ten or fifteen minutes later to report that she is asleep, would I like them to wake her to speak to me? Of course I never want anyone to wake her. Considering how drastically her life has changed since this time last year, when we were having hour long chats that were lucid and happy, with her in her own home, not diagnosed with anything, I do not want anyone to wake her if she is in a happier place in her dreams.
SMIL’s daughter writes that nursing staff are wondering if her medication is making her sleepy. You don’t say. The medication is to calm her, not least because other residents are terrified of her and the terror is affecting their mental health. It seems so hard to believe that this gentle person, quietly supported by a life-long religious faith, is now running round a care home, smashing windows, hitting staff with a telephone and pointing her stick at other residents.
SMIL’s daughter is summoned to medication meetings with various agencies at the start of next month, and is hoping for a few days away first, to bolster her courage.
I consider a hard aspect of dementia to be: whatever it is various agencies are planning to do to your loved demented person, to make them deal-able with in a residential setting, with other sick people, and your own contribution to that. SMIL’s daughter has Power of Attorney for medical matters granted to her by her mother. I did not have that for my mother. I had Power of Attorney for finance but in discussion early in the disease with my mother we agreed that leaving medication decisions up to doctors would be the route to go down. My mother, of course, craved attention from doctors. A procession of doctors quickly became dinner party guests. To her mind me getting in the way of her, as she saw it, charming the pants off a doctor, would have been undesirable. Yet I think this decision, by whatever means arrived at, did me a favour. I had enough on my plate commuting and sorting out the legal problems, running the household and managing the finances. I was grateful not to have to make the medical decisions. As it was I swotted up on diseases of the brain until doctors asked me where I had done my training and I still didn’t think I knew enough to decide which drug would benefit my mother.
SMIL’s care home are trying a variety of medications, in an effort to find the right one. It is my personal belief that a procession of differing medications, given to a person who was previously wary of taking an aspirin, might be contra-indicted, to put it in medical jargon.
Whilst there are no easy or obvious answers to this dilemma, what is clear is that SMIL’s daughter, having medical POA, will be let in for a lot of meetings. The current situation with the pandemic and staff shortages also present a possibility that SMIL’s daughter will nerve herself up for a meeting that gets cancelled, which has happened before.
Taking care of my mother by engaging a private care firm and re-mortgaging her home, effectively selling her house to provide for her care, had the benefits of reducing the number of lengthy meetings with the professionals. If you choose to request care assistance from agencies, however many agencies are involved will require a meeting about their level of involvement and decisions reached, and they will keep their own paperwork, and you will be required to inform yourself of it, not least so that everything is transparent and above board to protect the patient and the nursing and care staff.
It is a terrible choice to have to make, do you throw all the money you can access at the problem and, largely keep it to yourself, so to speak, cutting down the meetings, potentially having to run out of money and resort to other means anyway? Do you embrace the right to social assistance and keep the money, if there is any, maybe for greater care further down the line, letting yourself in for more consultations than you ever wanted with opinionated people, you may not like at all?
There is no right or wrong answer. All I can offer in the way of help is the knowledge that others have been in this dilemma before you.
There are classical stories in which the hero, entering the underworld, stands before three closed doors. One door leads to eternal fire, one to perpetual agony, one to a rickety stair which may lead up or down. If you are the hero in this you have the added complication of carrying your loved one over your shoulder; you are choosing the door for both of you.
You may see this as a good argument for having plentiful discussions with your demented relative as soon as possible after diagnosis.
I can tell you from personal experience that cancer and dementia are not diseases that like to be ignored. The sooner you embrace them, investigate and discuss them with others, the more choices you will have and possibly, the more possibilities to ameliorate the progress of the disease. I am sure, if you are an avid reader of the dementia diaries, that you will be aware that a vaccine that entirely cures dementia is on the cards in the future. This, needless to say, is a game changer. The better condition you can deliver your demented person in, to the future, the more future they may have.
But if you fail and the situation only goes downhill and you have every meeting pointlessly with every self-serving official life can serve up, know at least that you did engage with the situation. Recognise that if it were you with dementia, you would be so glad of a relative going on to bat for you and so bereft if you were abandoned, that any effort to help is a good effort.
And if you are reading this, you are making the effort, good on you. If all you can do is go and give your demented person a hug, a phone call, a postcard, you will feel better in the future because you did not run away.