We all have needs. They may change at different times of our life given circumstances, but there always seems to be a few core ones that never go away or lessen in our lifetime. If we pay attention to them and speak up and they are met (either by others or ourselves), then we tend to feel good, safe, secure or content. If our needs are not met, if we aren’t aware it is a need, if we are too shy to speak up- then we don’t feel good. We may look outward and blame, get angry or sad. We may look inward and think we are not worthy. When needs are not met, I am sure you would agree- that we feel bad.
What if you could no longer effectively communicate what your needs are? If you spoke and others who could help you, didn’t understand and so they didn’t/ couldn’t help? What if they did understand but didn’t know how to meet what you were needing? It would be like asking someone to scratch an itch on your back and they don’t get that spot even with your directions. It would be frustrating and most likely would cause upset. IE: Out of frustration you might think: Why can’t you understand? Are you stupid? Or outbursts IE: slapping a person’s hand away, leaving upset, yelling or sour looks. It would be agonizing and exhausting for both the person with the unmet need and the person trying to help.
Speaking up is only one part of the story when communicating needs. A person with dementia may not be able to communicate their needs verbally and so we need to look at the larger picture. Put your detective hat on and investigate the clues. In addition to what the person is saying, what is this person feeling? How is this person behaving? What do I know about this person’s life story? Consider too what was going on just prior to the upset. Perhaps there are additional clues and insights there.
Visiting another lady in a care facility, I was wheeling her through the empty dining room- we were just touring around to see what we could find. She started to become agitated and said “I can’t do it! I can’t do it!” She was really stressed. When we passed through to a quiet area, I turned to face her. I knelt down and took her hands in mine looked her in the eye and with a smile said “There is nothing to do. We got it all done and thank you so much for your help!” I didn’t know for sure what caused her upset, but I had a hunch. Going through the dining room with all the tables nicely set with tablecloths, place settings and such may have triggered a memory or past feeling of preparing for a social gathering- I knew that was a big part of her life. Feeling like it was too overwhelming a task to do now, she expressed anxiety and upset. She needed reassurance, that all was taken care of and even acknowledgement of her contribution for a job well done. Her smile and softened shoulders confirmed my hunch was right and we both carried on.
I titled this article after that song by The Beatles. It is an uplifting tune and injects hope through the lyrics to the listener. That is what I wish for you if you find yourself feeling a little down at the moment. If you are feeling a little tired. If you are feeling a little disappointed by something that is not as it should be.
You are a Caregiver. You bounce, you bend, you flex and you adjust to all that comes your way. It can be exhausting and being exhausted isn’t conducive to problem solving, making you less able to respond the way you want to. But feeling it can be a helpful indicator- a reminder that something needs to change. Either permanently or for a temporary basis. Something needs to shift when you catch yourself exhausted.
Take inventory. Step back from the routine knee-jerk reactions and responses to what the moment is throwing you. Take a breath or two. Yes, it is so easy to just do it yourself (because you are experienced and know better and…), ask yourself “is this the best use of my energy?” Don’t get me wrong, if in that moment you are faced with something that would jeopardize the safety or well-being of your loved one, of course step in and do what you need to do. What I am encouraging you to consider- and act on- is to expand your Circle of Support so it is not just on YOU.
What is a Circle of Support? These are the people, systems and services that work with you in your Caregiving role. They benefit you and your loved one. They can be family members, friends, services in the community, systems created by others who are in your shoes. Not just anyone will do though. You have certain criteria that they need to meet. Approach your family members and friends and inquire about their availability- the time (days/ time of day) that you can count on them to do what you need them to do. Having that preset schedule in place allows you that respite time to truly unwind or to know that what you need is going to get done without reminders or micro-management from you. Be clear on what you need and how they can best help you and what that means. If family or friends can provide only casual assistance and not the firm commitment mentioned, then consider checking out a few local services in your area. Learn about them- how they operate, who would be coming, and that they are clear about what it is they will be doing. That understanding will really and truly be helpful to you and to your loved one.
Expanding your Circle of Support will be as uplifting as that tune. It will inject hope and create a feeling of balance back into your life.
Please click the link below and take a moment to watch and really listen to these wise words. Enjoy!
Caring for your Parents AND your Children
You wake up to another day much like the one before, thinking about your career or business and what is going on in your children’s schedule that week. Today is different though. You received a call from your dad and you learned that your mom had a stroke and is now needing some additional support.
Not only is this scary for you, after all it is hard to face your own parents’ mortality, but how will this all come together in an already busy life? Deep breathe, and take the next step.
Learn as much as you can about the situation at hand. What is needed and why. Just gather the details that are available at this time. Have a conversation with your siblings if you have them. Give everyone an opportunity to talk and be heard. You may find that one person is having a harder time with the news than another. That is ok and gives you better insight to their contribution and/ or how they may deal with future information. Allow some space for that to sink in and for ideas and suggestions to come forward, being sure to include the obvious choice which is to let your parents share what they have decided for themselves.
Share the details with your own family, making sure they are able to understand what is going on. Let them know that their grandparents will be needing some extra time and care from the family. Allow some space for that to sink in and for ideas and suggestions to come forward.
Everyone’s role and responsibilities will shift and change to help one another out. At times it will be unclear as to what is needed or the share of the work is not balanced or you will be just too tired. It is helpful to be quick to express your appreciation and offer words of kindness while you are working things out. Kids can learn and develop new skills that help the whole household, parents can learn to trust a little more in their kids’ abilities and everyone can learn to rely a little more on each other. Deep breathe and take the next step together.
I participated in a workshop held by Bethany Care in Calgary a few years ago. They discussed their philosophy of care which is called Supportive Pathways. The instructor spoke of how to look to one's own personal beliefs and how they relate to care for an individual with dementia. She emphasized the importance of providing meaningful activities for the individual, even if that individual wouldn't remember the activity later. She challenged a common question that I have heard several times in conversations with family and individuals while in this business, that question is "why go to the trouble of ______ (ie: getting him/ her dressed for the weather, going out, bringing him/her to the coffee shop/ice cream parlor/wherever, only to have him/her not remember the outing?" The instructor clearly stated in response to the question "Life is more than memories." It may be true that the senior might not remember getting the specialty coffee/ ice cream or whatever it was, but you can be most certain that in the present moment- they really, REALLY enjoyed it! Isn't that what life is really, really about?
For more information about Supportive Pathways, please click this link.
As a family member who is now becoming a Caregiver, you have a lifetime of family history and dynamics with your loved one and you may wonder, how it will all work?
Your loved one may have been a difficult individual who has had the same behaviours, attitudes and outlook their whole life. They might not even realize or not want to acknowledge any past consequences from their behaviour or actions. Also, if there is cognitive impairment or delirium present, then that adds to the complexity of the situation. You may have feelings that had not been worked through and feel incomplete with them.
Recognize your loved one must initiate their own healing process, if they are able or desire to. They cannot be “fixed”. With some preparation, you can put together a plan that will give you better insight into the approach you will take to be a Family Caregiver and it may prevent or at least smooth the tougher times a little better.
Start off with spending some quiet time with yourself and check in for guidance. Use a notebook and write out the topics and incidents that set you off and caused you to react. Identify your hot buttons or triggers that caused you grief, anxiety or stress. These can include certain subjects, names, words or phrases and even non-verbal triggers such as attitudes, looks, moods and other specific behaviors. What you are doing is bringing to light the triggers so you can reduce your reactivity to them. If your trigger is hit, you will instantly recognize it as a trigger and be better able to follow through on your predetermined action rather than be swept away with your reactions.
Next, write out your boundaries. In a healthy relationship, boundaries outline how the relationship will work –what is acceptable and what is not. Factor in what you know about how your loved one expresses their self, consider the general mood they carry and the language they use. For example, a father who has always been demanding and loud may make his requests sound more like commands. The son may accept this of his dad but not accept swearing and verbal abuse. Creating boundaries ahead of time keeps you from reacting in the moment.
Don’t over complicate this process of creating boundaries, it will feel natural to you as you will be honoring yourself and your well-being. Your boundaries will be a measurement tool to help you determine if your role as a Family Caregiver will be a fit or not. If your boundaries are constantly being crossed, you will know that to continue will not be in the best interest of your health and well-being. You will be empowered to seek out other options. You can still be part of your loved one’s care but in the capacity that is sustainable and healthy for you.