Updated: Oct 14, 2021
When they were in their later years, my parents experienced serious health issues that impeded their ability to get around easily, so as a result I began to take on the role of caregiver in the sense that I would shop for them and clean their home. When my mother died quite unexpectedly, I had to assume the care support that she had been providing for my father who was wheelchair bound. My siblings played an important role in regular visits and phone calls which was so helpful but honestly I wish I had read Sue Ryan's book, Our Journey Together - 5 Steps to Navigate Your Caregiving Journey , before I became the primary caregiver. Sue shares valuable insight on how to not 'lose oneself' in the process of caregiving and how to avoid becoming overwhelmed.
Many of the students in my classes are at the point in their lives where they are either caring for an elderly parent or a spouse or will be in the near future. I asked Susan to address my fitness group in the hope that she might be able to offer suggestions on how to alter routines and behaviour in a way that would allow us to serve our loved ones better.
Here are my main takeaways from Susan's lecture:
Understanding our personality type can help us to understand how we will most likely react under stress so we can plan properly. Sue recommends taking the Enneagram Personality Test as it will help us to understand our perspective on the world, how we think, how we feel and how we deal with stress and make decisions. Armed with this information we can then choose the best path for ourselves by recruiting specialists etc., to handle the tasks that we cannot. We should not try to 'do it all' simply because we have become someone's caregiver.
We will have a unique perspective on the situation confronting us and it is best to avoid adopting someone else's. For example, someone may look upon your particular situation in a negative way, but we can choose to reframe it a positive light.
In her book Susan tells us about a meeting she had with a psychiatrist about her husbands diagnosis of dementia. The doctor expressed her sadness at the diagnosis saying that "dementia is a horrible, dreadful, awful debilitating disease." Susan chose not to accept the psychiatrists perception because it overwhelmed her. Instead she chooses to focus on the person instead of the disease. While still honoring the seriousness of the diagnosis, she is better able to see the beauty in the little things that she experiences with her husband.
We need to be wary of telling anyone that their particular situation is awful. We should never say, 'poor you' as this can make someone we love feel worse about the task at hand. I am particularly sensitive to this because I am neither poor monetarily or poor in character. We should actively listen and offer supportive words of encouragement instead of highlighting what the person already knows, that they are facing a tough challenge. And if someone uses words that make us feel badly, we can switch them up and change the whole tone of the conversation. For example when I asked Susan to come and talk to us about her husband I said, 'who suffers from dementia.' Susan kindly helped me to learn how to say this differently, "Jack is living with the diagnosis of a type of Dementia."
We must give ourselves permission to be who we are and who we are not. We are meant to live joyful, fulfilling lives. As much as we might try, we cannot be everything that our loved one needs depending on the seriousness of the diagnosis. We should not feel guilty if we have to ask for help or if we need to take a break in order to exercise, see friends or sleep. As Susan explained, we have to follow the model that the airlines demonstrate: put the oxygen mask on first so we can actually continue to help our loved ones.
Embrace your Framily. Friends and family want to help us but often they do not know how. Susan recommends making a list of a few ways that you can receive support on your caregiving journey, then when people ask you can give them options so that they can then choose what appeals to them. For example, I am a doer. Give me a job with clear parameters and I am so happy to help but I am not great at simply sitting and chatting so were I faced with helping a friend or member of my family I would thrive at getting little jobs done for them.
Help your loved one to be the best 'resident' they can be. Your loved one doesn't want to be a burden on anyone anymore than you do. You are the best person to advise the caregiving team in the home/residence or hospital how to best take care of your relative. Consider how your loved one needs to navigate the day and then do all you can to make it easy on them and the support team. Susan knew that her husband would get up and shave and brush his teeth if he knew that he had a 'meeting' with his former boss, so Susan laminated these instructions and put them on her husbands bathroom wall. Before he needed to be transferred to a residence Susan would carry small business size cards that explained her husbands condition asking the servers for compassion. What a brilliant idea!
Compassionate Truth, Compassionate Lies. None of us like to lie to our loved ones but at times it is necessary to tell them compassionate lies so that they can remain calm, and safe. When her grandmother, who had dementia, forgot who Susan was, Susan chose to become just a 'friend of the family' because this compassionate lie allowed her grandmother to 'maintain the dignity of her experience' and enjoy their visit. In the end we want our loved ones to be happy so it is okay to let some things go.
Re-evaluate the promises that you made and truly consider if they are serving the best interests of your loved one. Often we promise our partner or parent that we will take care of them always and keep them at home but we have to be careful that we are not putting them or ourselves at risk. We are not professional caregivers so it is crucial to examine the promises you might have made and ask for help where needed.
Our primary goal is to offer the best care possible to our loved one and in order to do this we have to approach the situation with both compassion and realism.
I wish I had known much of this back when I had three jobs, three teenagers and two aged parents to help. I did the best that I could but I now see how I could have done things much better. I should have reached out for help from friends who wanted to support my efforts with concrete suggestions. I should have done more to make my dad's last year easier on him by implementing some simple strategies to help him to be a better resident of the home he stayed in during the last year of his life. Instead I allowed myself to be overwhelmed by the big picture and as a result robbed myself of truly experiencing the little moments of joy before he was gone.
I hope that this blog helps you to make some changes to your own caregiving journey. Reach out if you want more information.