Some client consultations haunt me. No care situation is easy, but some are harder than seems fair in even the most evil of realms. I am frequently reminded that each of our stories is unique and I honor each person who so graciously invites me in to their experiences as a care consultant. But I’m a “fix it” kind of person. I like to come up with resources and help people solve their problems, and help them achieve their goals. The client I met yesterday reminded me that we need to plant bulbs and seeds before we can pick a bouquet of flowers.
When someone has a change in memory and/or behaviors, there are a few steps that all good clinicians go through. Ultimately, the doctor or nurse practitioner is trying to determine the cause of the memory change – and there are many things which affect memory so this can take some detective work. Unfortunately, it’s as much an art as science, so it may seem somewhat random. When I come in as a care consultant, the care partners (both the individual with the memory problem and the family member who supports their loved one) are afraid, confused and searching for answers. My role starts by helping them clear away the brush and debris and see what is planted in the garden. The metaphor of gardening helps us understand that answers come with time and the right external elements – and reminds us, although most daffodils look alike, each garden is different.
Brush & Debris Removal – looking at what might cause memory problems
Most people with memory changes have tried to compensate for the difficulties they’ve noticed – actually we all do – yellow sticky notes, lists on our smart phones, reminder calls from doctors’ offices. When these strategies are no longer enough, and families/friends start to notice, people with memory problems may work harder to compensate, or may have anxiety about changes they are sensing. The first step in helping as a caregiver is to gently remove the “debris” from the fall and winter. Leaves, twigs, dried remnants from last year can be cut back; but if we do this too abruptly, we damage the sensitive new growth. For memory changes, we start by looking at changes in health, new medications, and depression.
Forcing Blooms – dealing with denial
For both care partners, denial may be an issue. Just as there’s a reason why flowers don’t bloom on our command, denial is there for a reason. It may not be evident to us, but it is a coping strategy. Forcing blooms may give you a quick bouquet, but it won’t last as long, and won’t be as robust and healthy as a wisely tended garden. Supporting care partners as they work through their denial is the best strategy. Education is helpful but it will not help someone “get over” their denial. In fact, one of the early stages of dementia centers on denial. It is often a necessary step in making meaning of a new “normal.”
Integrity of the Bulb/Seeds – the history of conditions which impact the brain
A thorough review of past successes and challenges is the next step. Often the care partner is needed to help shed light on the timeline of changes. Also, family history, review of lab work (to rule out reversible causes of memory problems like thyroid and B12 deficiency) and other medical conditions are considered as we differentiate between the various causes of memory problems. This is an important step, and people should be as honest as they can be. For instance, one of the causes of memory changes is chronic alcohol use; it can cause a thiamin deficiency. Some doctors may not ask about alcohol, or families and patients might minimize it. Another cause is multiple concussions or head trauma. Our bulbs are vulnerable and significantly impacted by external conditions.
Nutrients in the Soil – issues of safety in the environment
Once we confirm a chronic memory problem is the issue (a neurocognitive disorder or dementia), then we need to work to adapt our plans to help the person meet his/her goals. In our garden metaphor, we need to nourish the garden. Our soil may be rich with nutrients – we need to cultivate that to help the garden continue to grow. The only thing we know about dementia is that it will progressively get worse; but with a nutrient rich environment, we can continue to grow a beautiful garden. First we need to address safety concerns. Specifically, driver retirement needs planning (even if the person is safe to drive today, the ability to safely operate a car will diminish). For some, retirement from work may be needed. Also, we need to develop strategies to minimize risk of getting lost (wandering), and strategies to maintain independence with supervision for medical appointments, medication compliance and overall wellness activities.
Protection from Storms – legal and financial considerations
Growing a garden doesn’t happen overnight. And there are many things that can happen as we patiently wait for the fruits and veggies we tend in our gardens. To protect us from the inevitable crises, people can plan ahead through legal documents and financial planning. Assigning a trusted family member your Power of Attorney is a good start. Sharing your wishes regarding so-called “heroic” measures at end of life (CPR, breathing machines, feeding tubes, dialysis, etc.) is an important way to protect your loved ones from having to make heart-wrenching decisions for you. You should also explore local resources which pay for home and community-based services which are helpful as the memory problem progresses. Medicare does NOT cover most of the costs of care for people with dementia. In most areas, there are programs which help prevent the caregiver from becoming impoverished while meeting expensive care needs.
Fertilizer and Watering – the right supports
To help our flowers/veggies flourish, we need to achieve balance in everything. Too much water is just as deadly as no water at all. For people with dementia, we face a constant renegotiation of the “just right” level of independence and care for safety and wellness. With professional guidance, this is much easier. Care consultation can help you identify the current stage, and which supports are best now, and in the next stage so you may plan ahead. Home companions, someone to assist with driving and shopping, emergency medical alert systems, wandering preventions, durable home equipment and nursing and skilled services in the home are all available. The majority of people with dementia do NOT live in nursing homes. With the right supports at the right time, people can live in the community and their caregivers can also get support.
Picking a Beautiful bouquet – living a new reality
No one would ever wish for a neurocognitive disorder. In fact, studies show Americans fear it more than cancer, heart attacks and death itself. With the right gardening strategy beautiful futures are guaranteed. Just like with gardening, doing all of this at once only results in exhaustion and ill health. Easy “fix-its” are not the answer. Doing one step at a time, getting a diagnosis, planning the future and implementing the right strategies for your unique garden will yield the beauty you all hoped for in later life.