Dementia Care: Can I care for myself when caring for others?

When someone in your family has Alzheimer’s, it can be extremely hard to find the right resources you need. The person with the disease needs help but so does the person caring for the person living with dementia.

Help can come in many forms:

  1. Learning about the disease 
  2. Adapting the home environment
  3. Finding community resources 
  4. Sharing experiences

There is so much to learn about the disease and what to expect. For instance, it is important to understand what mental and physical changes are experienced with Alzheimer’s so that you can better manage daily life and plan for the future. It can clarify what kind of physical activities or social events are appropriate at different stages and whether these can be managed independently or not. Even familiar activities and family gatherings might need to be approached differently. 

The home environment must be considered both to prevent falls and to facilitate easier management of daily activities. Simple changes to furniture arrangement, rugs, lighting and stairs can be helpful in reducing risk and keep people safe. Sometimes labelling rooms and cupboards can also make it easier for a person with Alzheimer’s to manage. 

There are helpful strategies of how to lead someone who is confused, how to use gentle persuasion because the person you want to look after might become stubborn or angry. This can be a challenge when there are health appointments to attend or even  going out to fun events. These are all important issues and there are many more.

Where to seek help

I’ve heard from a number of people caring for someone with Alzheimer’s that they cannot find the community or health care support they need. They feel alone and discouraged. So I was heartened recently when I came across a program called First Link.  This is a program of the Alzheimer Society of Canada.

“Connecting with First Link means you can:

  1. Receive one-on-one or group support
  2. Be referred to local healthcare providers and community services
  3. Meet other people in similar circumstances and exchange experiences
  4. Get help to plan your future.” 

I would love to hear from people about their experience using the First Link program or if you have found other ways to successfully get the help you need. In my region the Alzheimer Society of Leeds Lanark Grenville provides First Link and a great many other programs. 

I have worked with many individuals and families struggling to support someone and it is clear to me that while they need our compassion, more than that, they want to feel understood. 

People often come to me, not so much for help knowing how to care for their family member, but because their own mental health is deteriorating. Living for a long time with the constant worry of caring for a person with dementia is bound to cause stress, mental and physical. Some people will develop anxiety. Others will suffer with depression and hopelessness. Insomnia is common. Individual counselling is valuable but it can be very important for the caregivers to talk with people in similar situations. Listening to others can be a revelation. In such a group they often feel truly understood. They learn from each other.  This listening and learning can bring some surprising comfort to one of life’s hardest situations.

When someone you love has Alzheimer’s it can be devastating. I urge anyone in this situation to seek out the resources they need both for their loved one and for themselves. 

Conundrums

The word conundrum recently came to my mind when a prospective patient missed his second scheduled introduction appointment. A conundrum is defined as a tricky or difficult situation.

It is quite the conundrum when one is feeling poorly with symptoms of mental illness, hopes to get help from a health care professional, yet cannot seem to find within what’s necessary to follow through and keep that appointment.

As a nurse practitioner who has been working with mentally ill individuals for many years, I understand that symptoms such as apathy, low motivation, anxiety, and impaired cognitive functions negatively impact a person’s ability to make and keep appointments.

As a health care provider, I naturally encounter my own conundrums.

How do I help someone who wants my help but cannot seem to make it to our scheduled sessions, or someone who takes weeks or months to respond to written correspondence?

How much of my available resources should go to helping those who seem to be unable to show up for the help available to them?

Generally speaking, I steer away from spending much of my time sending reminders to my patients. I believe that people are capable of taking some responsibility for their commitments to others and that once shown how, motivated people find ways to set their own reminders. “I have plenty of commitments and appointments to manage in my own life,” I tell myself.

That said, I also believe that some people who need mental health care also often have a lot of difficulty with making and keeping appointments and that they might benefit from some support with this for a while.

I have heard of providers who choose to work only with patients who are well enough to keep their appointments and who are able to promptly follow through on their recommendations. They prefer to work with people who are highly motivated and dependable. They also prefer to keep their schedule nicely packed and predictable. I understand that!

There is so much demand for the services we offer, why not focus our energies on “those who are really working at it,” right? Well, for many reasons, both professional and personal ones, I feel more lenient about this.

My experiences and beliefs have led me to introduce in my approach some strategies beneficial to those not quite ready for more structured health care services. I have had some success with my approach.

“Same Day Appointments”

What I offer, to those who want help but cannot seem to plan ahead and follow through, is something I refer to as a “same-day appointment.” I invite my struggling patients to text me or call me on my appointment days (currently Tuesdays, Wednesdays or Thursdays) and, if I have a space available that day, I can offer an appointment either later that day or if the timing is just right, we can sometimes talk right then.

While we work on their recovery plan, we explore strategies that might help them better manage their barriers to successfully working within a more structured routine and, when ready, they graduate to regularly scheduled appointments.

Same-day appointments have drawbacks. For instance, the patients who are only taking same-day appointments:

  • Cannot count on having a session available when they call in.
  • Cannot grow to rely on their “next upcoming appointment” for support, since they don’t have anything on the calendar to look forward to.
  • End up having less support than if they had a regularly scheduled appointment, simply because our schedules don’t always match up on short notice, and waiting for a good match-up can lead to longer intervals between sessions.

On the upside, however…

  • As a patient, finding help, even under less than ideal circumstances can be a blessing.
  • The patient who learns strategies to improve their reliability is eventually able to apply that skill in many areas of their life and with many other service providers.
  • Same day appointments allow me, the provider, to begin helping people whose lives are chaotic.
  • Booking ahead only those who mostly keep their appointment saves me from waiting around on people who don’t show up.
  • Fewer no-show or late cancellations save me from disappointing my other patients, who want an appointment but can’t get one, while unbeknownst to them, not long after an appointment ends up being wasted by a person not showing up for theirs.

About no-show or late cancellations fees

Here are a few reasons why I sometimes invoice my patients for their unattended sessions:

  • An unused appointment does not mean free time for me. In fact, I almost always end up having to follow up with the person who did not show up or cancelled late.
  • A no-show or late cancellation disrupts my workflow. Waiting for someone often leads to some amount of wasted or low productivity time.
  • A no-show or late cancellation does not allow me to fill the appointment and earn my fee from someone else.

Truth be told, I really hate to see anyone waste their hard-earned money. I give people many chances, and I never make the decision lightly, but when a person misses too many times, I start to charge them for their missed appointment or their late cancellation.

It’s also true that some people learn more from negative consequences than from too much leniency, so while it is always a hard decision for me, I remind myself that I sometimes I help by not being too lenient.

I hope that my reflections will lead to someone seeking help sooner rather than later from me, or from someone else who hopefully uses a similar approach.

Unfortunately, this prospective patient of mine is not my first patient to have struggled to get help, nor will he be the last person I will encounter who is not getting help promptly because he is feeling so poorly.

Let’s all try to be a bit more lenient and make it as easy as possible for people to get started on their road to recovery.

Nathalie