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My Perspective: Care for the Alzheimer's Caregiver

Posted on September 15, 2016
Article written by
Tiffany Gustafson

myALZteam launched in December 2015 with 500 members and has grown into a community of 42,000 caregivers! We are the online social network and online support group for those caring for a loved one with Alzheimer’s.

Caring for a loved one is stressful, tiring, frustrating, and also a very important and much-needed role. It is a job that you learn on the go. There is no ‘right’ way, and it is a responsibility that requires constant adjustments. Most caregivers will also tell you, it is a role that comes with a lot of judgment.

As a caregiver, I can attest to putting myself on the back burner many times. The more I did it, the more everyone suffered. I would feel extreme guilt for wanting to see my friends, go to a movie or just have some me-time. Outsiders always seemed to think I wasn’t doing enough or doing it right, however very few were willing to show up and help.

What I have learned in my years of caregiving is that you cannot be an advocate for your loved one if you are not taking time for yourself. You are important. Your health is important. You have to put on your oxygen mask first before you can assist someone else.

The National Alliance for Caregiving found that more than half of all caregivers say they do not have time to take care of themselves, and just under half said they if they do, they are too tired to do so.

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It is important for family caregivers to find their own semblance of a “normal” routine to help nourish their self and create some type of balance. This will vary from individual to individual. You have every right to focus on yourself at times while being the ringleader in this circus called caregiving.

Below are some ideas to help ease the pressures caregivers are under:

  1. Write: It is important to have an outlet for the stress and heartache that is endured each day while also remembering the positives that occur. Try writing down 1-3 things that you are grateful for each day. Then reflect on the day. This is your chance to let it all out. After that release all that happened and write something happy or funny that will lighten the mood.
  2. Nutrition: Those we care for tend to be picky eaters if they still have the ability to consume food. Try quick, simple healthy meals that are easy to put together. I recommend recipes that offer "clean eating" for kids. The recipes are easy to make, and remember our loved ones tend to revert back to wanting foods that remind them of their youth. Also, drink lots of water. It is easy to get caught up in caffeinated and sugary drinks but water is so important to our organs, energy levels and overall health.
  3. Set boundaries: No your limits and don’t sway from them! If there is a family member that is on your case, limit their visits. (Hard to do but a must). This also means know when to ask for help. If something is out of your scope or too much, ask someone. It is a difficult task, but people are not mind readers, and those who dive in to assist you may surprise you.
  4. Movement: I steered from the word exercise because it can seem time-consuming. If you can get 20 minutes of activity in 3 times a week while your loved one is sleeping, watching TV etc. you will feel so much better. You can even break those 20 minutes up into 5-10 minute increments throughout the day.
  5. Sleep: One of the most challenging aspects of caregiving. You hardly get any, but if you have a routine you can do at night that helps calm your body and mind, the sleep you get will be so much more refreshing. Things to try: baths or aromatherapy, candles and five minutes of reading or soft music, meditation, and/or a cup of herbal tea.

The goal of these self-care tips is to allow you to be more patient, less frustrated, and less resentful. Without these small recharging moments, the caregiving role can have the capacity to burn you out and leave you sick, depleted and unable to care for the one you love.

It is important to remember that caregiving does have its upsides too. There is an intimacy and deep bond that occurs with family caregivers that is not present in any facility. You have the opportunity to exchange stories, learn lessons about life, and feel a deeper love when that loved one recognizes that you are there for them and only them.

My Perspective articles discuss Alzheimer's disease and dementia from a specific point of view. We understand that everyone with the condition or caring for someone with the condition has a different experience. We aim to share as many of those viewpoints as we can. We’d love to hear from you. Please submit your proposal for editorial consideration to editors@myhealthteams.com. My Perspective articles don’t reflect the opinions of MyHealthTeams staff, medical experts, partners, advertisers, or sponsors.

Tiffany Gustafson is a member of myALZteam and the primary caregiver to her father who has Alzheimer’s. Learn more about her here.

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