I was asked by people to share what it means to be a caretaker several months ago. What does it mean, had me reflect back to the start. Twenty years ago my wife was diagnosed with borderline functioning disorder and schizophrenia. Started with revelations of sick pets which was spot on, seeing people in the home, and hearing voices. So many stories and episodes that it would take a long time to go through each one.

If I had to some up what it means to be a caretaker in one word it would be selflessness. One must be willing to put the needs of their spouse before their own. Both illnesses have unique and different types of care for caretakers depending on the level of each illness.

For my caretaker responsibilities, I chose to stand by my wife, watching her turn from an intelligent, vibrant individual to a 5th grade level mentality was difficult. The inability to remember things, even what day it is, leaving the gas on while cooking, doors unlocked and other things often cause panic and fear of something happening while at work. Do move as close to work as you can in case needed. This sense of panic will not go away and what helps is creating a caretaker schedule and list of safety items, calling your spouse various times through the day to remind of things such as turning gas off, taking medications, locking doors, and many other things.

Travel for work is difficult or even a run to the store for groceries because you’re basically leaving a 5th grade person alone who will get worse, which brings many challenges. The feeling of sickness when traveling due to worries will never go away, just something that will have to be managed.

Other things one can expect depending on the seriousness of the illnesses is not having children as your spouse cannot engage in physical contact and accepting a life of abstinence. This may sound difficult but find things to replace such as for me food experimenting, cooking food, school, and home hobbies to keep your mind occupied, or other things that may work.

Being a caretaker requires dedication and accepting your life will change in many ways. The inability to maintain friends due to lack of understanding of illnesses and lack of time, inability to live a normal lifestyle such as hobbies that take you away from the home, and other things are just a few considerations to consider before taking on the task.

Both illnesses turn your spouse into someone who wants to stay home and not engage people, at least once a week, find ways to convince them to let you take them out shopping and lunch, why social interaction is a problem, this weekly items is important with the overall process.

While I am not perfect in any manner, and have made my share of mistakes in life, you will make more and find what works. Everyone has advice but unless they have lived with it for many years, the advice is usually wrong as each illness is unique.

My items shared here will not work for everyone as well. I would like to think when I meet my maker, I will have demonstrated compassion and putting others before myself will help me get through the gates of Heaven.

Each of you who are caretakers have to find your own self-peace on how to manage your caretaker responsibilities and know you’re not alone, many others have taken this on.

You will miss having a normal life such as children, intimacy, traveling, hobbies and so on, but remember, there are other things to fill these needs and will have to find what works for you as everyone is different.

Folks with schizophrenia, are at a higher risk for other illnesses such as Alzheimer’s. With this and other factors of schizophrenia and border line functioning disorder, it is also important you plan for long term care both mentally and financially. At some point there will be a good chance you may have to commit your loved one to a home for deeper care. Plan accordingly as being a caretaker at some point will need multiple doctor’s advice from both physical and mental aspects.

There will be days when you are overwhelmed and need someone to talk to, but not many who understand making talking to others difficult thus find a support group. There will be days you just need sleep and important so get rest. Find groups whether in-person or on-line to share your experiences.

Be positive, remember life is short, and find some time to enjoy what you like where possible. You can reach burn-out if you do not find things to fill the gaps of a normal lifestyle. If you’re not healthy, you will not be able to be a good caretaker so visit your doctor regularly. Seems as we get older a lot more visits these days to the doctor.

So, when I am asked what it means to be a caretaker, wow, a large question that I tried to summarize here based on people asking to share my experience. I am sure I have not mentioned everything here such as having doctors on standby, numerous trips to hospital, and other items, but wanted to share as requested that taking care someone when others will not, is an honorable thing, know you are doing the right thing, and God will reward you for your selflessness and compassion. You are not alone.


Written by Guest Author
The Caregiver Space accepts contributions from experts for The Caregiver's Toolbox and provides a platform for all caregivers in Caregiver Stories. Please read our author guidelines for more information and use our contact form to submit guest articles.

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