What do I do?: Planning for a Life Post-Diagnosis

By Haley Benningfield

A29Q7459

“This is a marathon, it’s not a sprint.”

Dr. Lisa Olsson has been a neuropsychologist at Pacific Medical Centers for 15 years. Previously she worked with patients with developmental disabilities for the state of Washington and prior to that she worked with patients in California with head trauma, developmental disabilities and dementia.

Her connection to Alzheimer’s is personal as her grandmother has the disease. However, Dr. Olsson says that it’s her time with her patients that has impacted her the most.

“It’s the fact that I will sit with a family for an hour, after spending three, or four, or five hours in testing, and having to look a patient in the face and say, ‘this is not information that I want to give you but you need to know what’s going on and the reason you’re having trouble remembering these things, or driving, or cooking, is because I think you’re experiencing dementia,’” says Dr. Olsson. “‘And the most likely form of dementia is Alzheimer’s disease. Because of the pattern I am seeing in testing, it does look similar to Alzheimer’s so that’s probably what we’re up against, so now let’s talk about what we’re going to do.’”

A29Q3586

Within the two to eight hours Dr. Olsson spends with a patient and their family, she does her best to address questions and concerns and help work them through it. From there, it is creating a care plan to make sure they have the fullest quality of life.

“A preventative care stand-point has the best benefits,” Dr. Olsson tells us.

Many patients want to know what they can do to prevent becoming more diminished, and she confirms that a healthy lifestyle will always be beneficial, but it also requires putting in the effort to stay on routines.

We try to set [patients] up with routines and habits that will help them long term,” says Dr. Olsson. “Like a pill box; even if they only take a baby aspirin or a multivitamin, I encourage them at that earlier stage to set up the habit of putting their pills in a pill box. They’ll say, ‘oh I am only taking this and it really doesn’t matter,’ but at one point or another, you may have to have a blood pressure pill, or a diabetes medicine, and it will matter if you miss it. So once you have a habit and routine, it’s easier to build on that habit and routine. It’s harder to develop a habit or routine if you can’t remember it.

Another benefit is having a support network of friends and family. Caring for a loved with Alzheimer’s is incredibly taxing on the caregiver. Dr. Olsson says some of the best people for caregivers to connect with are other caregivers.

“I think that within our group [at Pacific Medical Centers], we would all like a more robust caregiver support/patient support program. Family members get extremely frustrated having to answer the same question over and over and just being able to sit in a room with six other people who are thinking, ‘if I have to answer that question one more time,’ makes you think that you’re not alone in this. I am not alone in this, there are people, I have people here; I have a group, I have a crowd. It feels less isolating. And I think that once you feel less isolated, you feel less overwhelmed.”

CommunicationDr. Olsson wants every Alzheimer’s patient and their families to know that a diagnosis leads to a change of life, but it isn’t the end of life.

“Yesterday I gave a diagnosis for Alzheimer’s disease to a 70-year-old woman, they had just retired, they had plans to go to Europe, they have a very nice trip planned in a few months and [her husband] was quite stunned by it. He felt like she was off, but he thought it was stress. When we looked at a few very specific things she did, he was quite disturbed and he said, ‘I think you’re wrong.’ I said, ‘I hope so. But if I’m not, we need to talk about these things.’”

“It was about an hour conversation, and at the end of the day I said, ‘Nothing changed today, between you coming in and leaving, other than that I gave it a label. I gave it a potential label. I named it. But nothing she did on her way in here and yesterday is something she can’t do now, right? She didn’t lose any function being in here. We just have more information and more direction to go in.’ But I tell patients, the caregivers, that they should be patient, that they should give themselves some time to grieve the diagnosis, that they should grieve the loss of what they expected, what the trajectory was supposed to be.”

Advertisements

One comment

  1. Thank you, Dr. Olsson, for your incredibly compassionate work.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: