The exhaustion of being on pins and needles?
This week on my visits with other stroke survivor caregivers, I noticed the emotional exhaustion of being on pins and needles waiting for the next issue to arise? It is never a matter of will it arise but rather when and how severe. I was with a gentleman that shared, “I thought I was finally at a place where we were moving forward and she had a second stroke. When will I be able to fully catch my breath? I can’t seem to prevent issues.” His comment caused me to freeze in my tracks. I had just had the same thought a couple weeks prior when my husband developed a cardiac issue requiring follow up.
How do I handle the medical uncertainty of their ongoing medical issues? Do I have days that I just want to scream? Am I continually surprised when a setback occurs? Do I hold it all in so that I don’t burden others? And last, Do I get so emotional tired that I just want to throw in the towel?
The answer is some issues I handle well and others not so well. The one word answer to the other above questions….YES!
Who is this person post stroke?
In a moment your life changes. Your loved one has had a stroke and fighting for their life. All you want is for them to survive. That is how I felt. Now years post stroke and being a caregiver advocate I found that I am not alone in thinking “Who is this new person post stroke?”
When a loved one experiences a stroke, two things happen, the fear of a second stroke overwhelms and the injury to the brain changes them. We have experience both of these in our home. How your loved one recovers physically does not always tell the story of the recover to the person they were before.
As time passes and the crisis is resolved, that is when we realized the change. I know that my expectation that he would recover 100% was unrealistic.
Dealing with the problem of impaired memory.
Have you ever experienced when you walk into a room and completely forgetting your purpose? Ran into someone at the store, but couldn’t remember his / her / their name. Age, distraction, or a stressful lifestyle often causes this kind of memory lapse.
This month’s topic: memory impairment after stroke. Caregiver impact and helpful advice.
Various parts of the brain control memory. The injury to my husband affected turning recent memories into long-term memories. He can remember long-term memories, but these memories are not always precise. This newsletter is for you so that you won’t feel alone. Your healthcare provider can describe the effect of your stroke on your memory.
Some of the caregiver challenges I have experienced.
Resources for the caregiver.
I have been working with caregivers of stroke survivors for over three years. I have meet so many thru the initial hospitalization process, support groups, talks and social media. The common thread has been what support is available for the caregivers? Having the same question years ago, I started my mission to support you the caregiver.
Tip #1: Checkout the web
Thank you for being part of my online conversation but if you want additional information or a special focus here are the key words to use. This is where I started and was able to find general information hence, I developed www.strokecaregiverconnection.com
Stroke Support
Stroke Support Groups
Stroke Caregiver Support Groups
What to expect post stroke
Top Tips for the Backup Caregiver
This week, I would like to share some tips for the individuals that provide backup for the primary caregiver. Remember caregivers, you need to take time away for YOU! Please share this video with your backup caregivers so they are prepared. Let’s begin.
Welcome, backup caregivers! Maybe you’re stepping in for a day or filling in while the main caregiver gets a well-deserved break. First—thank you. You’re playing a crucial role."
Tip #1: Know the Routine”
“Before you jump in, get a quick rundown of the daily routine—mealtimes, meds, bathroom breaks, and favorite activities. Consistency helps your loved one feel safe and calm.”
Common Concerns and Questions from Caregivers
As a caregiver advocate, I have spent time with primary and supporting caregivers at the hospital during this phase. The stroke survivor has stabilized, and the plan is to receive rehabilitation services.
I have received some questions and concerns. Again, most depend on the health and progress of the stroke survivor.
We are thrilled our loved one is better, but will they ever be the person they were pre stroke?
This is one question I asked at the beginning. Although brains look alike, stroke recovery and response are unique to each person. Your best bet for an answer is to ask the health team, especially the neurologist. It varies depending on where the stroke occurred, the patient’s response to treatment, and their recovery progress.
My husband has changed, in my experience. In some ways, he is better; he appreciates life more and doesn’t seem to stress over daily issues. What has changed is more his personality. He has poorer recall and displays more apathy. The changes are becoming easier to handle as time goes on.
What happens when the caregiver is ill or away?
The flu has been everywhere this year. I had a bout and was out for a week. Having the flu and unable to provide support for Rick was worrisome but we did ok. But it made me acutely aware of a topic that we have not discussed - What do you do when the caregiver is ill?
Stroke survivors have several levels of care. Some are pretty independent with minimal assistance and yet others require full time care. How do you plan? What are your options? How to keep them safe? and what you need to do to recover?
This has become a topic of concern lately at support groups. This week, I would like to share some ideas and strategies on how to navigate care when you are ill or away from home?
4 key items:
Identify all of your options for care
Develop a plan
Develop a plan of care for the support person to follow.
Your plan for YOU
Why is routine so important for Stroke Survivors?
We all have our daily routines. Some are harder than others (Like exercise) but they help us to navigate our day. When a loved one has a stroke, normal routines from pre-stroke are a thing of the past. There is life and hope post stroke, and the new routines will become second nature.
Why is it important for everyone to have routine in life, especially stroke survivors?
Routine:
Helps to reduce daily decisions. The SS knows what tasks are needed each day and the need to decide and struggle to think too much on the task is eliminated. It becomes habit.
Helps to provide structure. A typical SS and caregiver day can vary from day to day. With a structure to your day, both are better able to handle changes. They are able to plan the day and allow for spontaneity. It is common post stroke to feel that you have lost control of your life. The act of doing routine tasks provides a sense of control. No task is too small.
Helps to decrease stress. Having a routine plan for the day helps the SS better navigate and feel a sense of control for their day. When the routines become second nature, self-confidence begins to build. When you feel you have conquered a routine task, you are more willing to take on additional and out of their comfort zone activities.
The Upsides of Ongoing Therapeutic Sessions
After several months, I noticed that Rick’s balance was getting worse, and his speech was getting more garbled. He would try to compensate by using his non affected hand and limiting conversation. He had become comfortable with the status quo. My gut told me there was more that could be done and did some research that I want to share with you. Bottom line --- Don’t give up!!!!
When can a Stroke Survivor drive?
When it came to driving, Rick was a “rebellious teen”. The return to driving is a big step that not only affects your loved one and you, but also everyone sharing the road. He felt that he had been driving for years and now this vital part of his independence was gone. The location of the stroke and the subsequent recovery is a determining factor on their ability to drive again. This may be an ongoing argument, and you need to remain strong.
During inpatient therapy and for about six months after, Rick understood he was not healthy enough to drive. The impairment of his reflexes, decision making, coordination and memory was acute. With each improvement, we had hoped that he would be back to 100 percent. Unfortunately, he was not, and adaptations had to be made. He was determined to drive as soon as possible. He thought he was ready long before I felt he was. Stand firm when you hear:
Stages of Caregiving: What to expect.
The caregiver is the sole survivor of the stroke and needs to take on both roles in the relationship. Most are familiar with the stages of grief identified by Kubler-Ross, denial, anger, bargaining, depression, and acceptance. The grief felt is the loss of your planned future and your loved ones’ abilities. Each phase is challenging, but part of the road to recovery.
The stages I experienced as caregiver were confusion, fear/anger, loneliness, depression, and realization. During the initial weeks in the hospital, I felt confusion and fear based on that day’s challenges or triumphs. In time, I realized that the goal is to identify where you are and to embrace that stage.
Emotional Grief and Exhaustion
The past few months, I have been visiting caregivers at the hospital. Their loved one had a stroke within that week. They are trying to navigate this new life, exhausted and fearful.
I have been in your position and know the fear. Your loved one is different, and your relationship will change. Like you, I am grateful that my husband survived but that doesn’t stop the pain of losing the essence of someone you love. You can’t move forward and try as you might, you can’t move back.
The old ways of communicating with your loved one no longer work. Trust me, I tried this past week, knowing ahead of time that he could not fully participate but hoping that this time I could get thru and bring him back. He listens and shared he would try harder to connect and care but it is no longer something that he can do post stroke. We both cried knowing the truth.