Last week, you were living your life as usual and suddenly, a health crisis occurred for a loved one and you have been thrust into to a new role. The family caregiver. What does this mean? Are you ready to take this on? Am I capable? Why me? These are all valid and real questions that we have all had when faced with the role of caregiver.

As a caregiver advocate, I have learned through personal experience and the wisdom of others some tips on how to make the transition. But before you take on this role, I advise that you ask yourself some basic questions. As I share the top 5 questions to ask yourself and some tips, reflect on your answers and feel free to reach out in the comments below or contact me for additional support.

Why do we avoid being angry or expressing our frustration with our loved ones?  GUILT 

A common but very real issue is dealing with all the emotional and physical care of the stroke survivor.  They have had a terrible health crisis and are trying to get back to where they once were.  But it takes time or may not even happen, and we understand we need to be patient but “come on”, we get tired, angry and need to call them on their behavior.

Walking on eggshells, avoiding conflict, or holding all your feelings in is not healthy for either of you.  Anger is a normal emotion and if not dealt with in a positive fashion can fester and lead to resentment, lashing out in a negative way and causing more divisiveness in a Care Partner/Stroke Survivor relationship.

Why do we avoid being angry or expressing our frustration with our loved ones?  GUILT 

Over the past few weeks, we have travelled to see our daughter’s family in LA. Every minute was precious and filled with joy, but it can be very overwhelming for the stroke survivor and the Care Partner.

Due to their stroke limitations participation in activities and conversations are a challenge. What I experienced – My husband sat back and did not participate but observed. This was difficult because as the Care Partner, I was either making conversation for him or trying to explain his behavior. It is difficult to hear “He has really changed” “Why doesn’t he talk to us?” or watching Rick and the family not interacting as before. What I tell others “He loves you all and is content sitting back and watching” “Communication is hard for him.”

The feeling and realization that your loved one is slowly fading away from social situations is heart breaking. At home, one on one, He does well, although limited but he can engage. What causes this phenomenon and what can you do to improve. As we have traveled and had more social events, I have developed some strategies that I felt helped and want to share with you.

The emotional challenges began once home and remain an ongoing trial for us. Stroke affects the brain, and the brain controls our behavior and emotions. Rick experiences feelings of irritability, forgetfulness, carelessness, and confusion. Both of us experienced depression, anxiety, or anger. If you and your loved one are also feeling this way, discuss with your physician whether anti-depressant medication would be appropriate for your loved one and you.

Rick’s personality changed from being engaged in life to an attitude of apathy. He refers to it as being disengaged, that he is an observer in his own life. Apathy is a lack of interest, enthusiasm, or concern for life, feeling empty and not knowing why. His regular response to my questions about things became, “That sounds good. No big deal.”

A stroke is the “gift” that keeps on giving. When you think you’ve figured out how to handle something, the brain throws you another curve. My brain was overflowing with questions and emotions regarding Rick’s stroke that I was desperate to share with him, but he could not process. I had no idea if or when I could expect that he would again be my emotional partner.

For many months, my husband’s health has had expected changes due to the stroke and underlying health issues, but they have been manageable until now. Over the last few months, as many have experienced, changes have occurred and we as Care Partners need to adapt to keep our loved one and others safe.

Over the next four weeks, I will be addressing cognitive changes, emotional changes, communication changes and physical changes such as driving.

This week let’s start to tackle cognitive changes that you may see, when to address with a health professional, how to discuss with your friends and family and tips for the Care Partner.

What is a cognitive change?

When your loved one starts to have problems with memory and thinking, this is considered a cognitive problem.

Financial concerns are one of the top stressors for your loved one and for you as the Care Partner. I know that when my husband became ill, I needed to retire. This was not planned but as we know life changes and we all must adjust. I am NOT a financial expert or qualified to give advice, but I can share some general information provided by Medicare and AARP.

For individual support and guidance, please contact a financial consultant.

Resources available…

AARP: Getting Financial Assistance for Caregiving Is Not Easy — but It's Possible

As a caregiver, we can get so focused on the needs of the loved one we are caring for that we never really ask “What are you experiencing, emotionally” When I was writing “Stroke and the Spouse”, my husband shared what it was like from his perspective. This opened a new avenue of conversation, a valuable perspective. I won’t share the whole chapter, that is in the book, but I would like to share his “Helpful Tips for the Caregiver.”

Point of view from my loved one…

Life had presented me with circumstances that required me to be totally self-centered. Things were happening to me and regardless of whether I was prepared or not, I was forced to deal with them. Only later did I look back and realize what I put my spouse, family, and friends through and there will be guilt. Leaving Lana alone to handle everything made me feel guilty; guilty about relying on friends to do simple things for me, even though they’re doing exactly what I would do if the circumstances were reversed. I felt guilty about interrupting my children’s lives. I felt guilty about being angry with God. Eventually, though, I came to realize that I did not cause this. It is merely the situation it has forced me to endure. It’s no one’s fault. So, I love my spouse and appreciate him for all he has done and will do for me on this journey. I’ve embraced my family and friends and tried to thank them for all they’ve done. And I thank God for having given me another chance at life.

Looking back over the last few years, I have realized that I have experienced a gambit of emotions. When a health crisis happens to a loved one, it is very similar to a death. The life you have planned has changed and is either no longer possible or needs to be adapted. Fortunately, unlike a death, we still have our loved ones with us.

Whatever stage you are at is absolutely where you need to be. The stages of the caregiver are not linear and change as life changes. You may feel on Monday that you have an accepted and are at peace with your new lifestyle and then on Wednesday have a complete meltdown. That is why it is so important to acknowledge where you are and reach out to others. Please use the comment section below to share.

We are going into our third-year post stroke. Over these many months, I have had struggles, tears, and frustration but I also have learned so many tips and tools to help handle this life change. Coming to a point of acceptance that this is our new normal, the good and the bad. The first two years, I was in survival mode but this year, I want to flourish in my new role. I want you to also flourish as a caregiver/care partner as well.

As Care Partners of stroke survivors, the best way to start the new year is not by making resolutions but to realistically look at your situation and determine what will bring you joy and happiness.

I love to entertain and have a house full of guest. Rick and I would start planning early. He would decorate the outside and I would do the inside. Like all couples, I did the shopping but we would joke, he was mt last minute man. I could always count on him to run to the store numerous times to get that one ingredient that I forgot. He would laugh and never complain.