Stroke Survivor Steve and Care Partner Connie

During the last four years, I have gained firsthand experience of the profound difference a caregiver/care partner contributes to the comprehensive health and overall state of a stroke survivor. During hospital visits, healthcare appointments, time at home, and social engagements, the primary consideration is the stroke survivor. While I do not diminish its importance, it is imperative to note that you are another individual who has survived a stroke crisis.

This month, I would like to share a caregiver/care partner story with you that explains how important your role is and that you are not alone. As you read the story, the part in bold is how the caregiver/care partner made a difference.

Steve and Connie are in their 60’s and were looking forward to retirement. Their children were raised and they are enjoying grandchildren. Both had been in good health with some minor issues. Suddenly, at dinner, Steve started to talk funny and his right side was not functioning as it should. Connie knew something was wrong and immediately called 911.

In the emergency room, the stroke team gathered to save Steve’s life. Connie, while in shock at what was happening, became the key decision maker and provider of information. She provided all the details, health history, and medication. She then needed to call her family and provide information and support for her adult children – still not knowing what to expect.

Steve stabilized and was moved to a hospital bed. His stroke necessitated ongoing physical, occupational, and speech therapy. The plan was inpatient rehabilitation upon hospital discharge. Connie no longer had a plate full of responsibilities, but now a platter.

Navigating the healthcare system was not something she knew. While Steve was working hard to improve, Connie needed to provide support and encouragement for not only Steve but family and friends; even when she herself had no idea of next steps. She was exhausted, and she had no one to talk to that had been in her role and didn’t know what she didn’t know. 

Steve progressed to inpatient rehab and began the work of recovery. He needed to be able to participate at least three hours a day. By evening, he was exhausted. It takes energy to relearn tasks that you once took for granted. While Steve was getting rehab, Connie needed to learn how to provide physical, occupational, and speech techniques at home. She visited daily to ensure she was prepared, but soon realized that when Steve was exhausted or overwhelmed by the results of the stroke, Connie became his sounding board and anger outlet. Even though she understood, she was also dealing with so much that she wasn’t able to share with her life partner.

Connie had little idea what she needed to do at home to prepare for Steve’s arrival. While at home, she needed to assess finances, both of their jobs, and possible retirement, adapting the house, all while dealing with the emotional aspects of the crisis they were dealt with. She was frequently told she was “so strong and so lucky Steve is doing so well.” Though she appreciated the support, she also knew the reality of the situation. She did not feel strong and although Steve survived, he was not the same person they knew before.

Steve and Connie’s journey continues, but their story provides a glimpse of their reality and the role the caregiver/care partner plays during the initial phase.   

Aphasia: When the Brain Knows but the Mouth Can’t Say

Being able to communicate your needs and desires is essential to human experience. When a loved one suffers from a stroke and the resulting limitation is speech, the medical condition called APHASIA, a new form of communication develops.  This month, I would like to share some insight from those that have not only experienced aphasia but also their caregivers. 

Aphasia can present as speaking difficulties (the most common), understanding, reading or writing.  The area of the brain impacted, usually the language-dominated left side of the brain, specifically the frontal and temporal lobes.  Remember: Every patient response differently to a stroke.  Speak with your health professionals regarding your loved one’s specifics.

Aphasia can look different from loved one to loved one.  Aphasia can also present as being able to only say a few words, mixing up words, unable to find the words, and unable to understand conversations (especially with many people at a time).

Stroke survivors with aphasia have shared two things that they wanted me to know.  First, we are still here and able to think but we have difficulty speaking – “We are not stupid, we have a brain injury”.  Secondarily, be patient, when you talk to over us or finish our statements, we then need to start all over again.  Excellent advice for all of us.

My husband has times when it is difficult for him to speak, his words become garbled and he tends to shut down and isolate.   What we have found that can make his speech worse is when he is tired, being rushed to provide a response, noisy environments and when he feels stressed (That he feels he needs to communicate as before)

New Ways to Talk, New Ways to Listen

This has been a challenge for me.  Being silent while my loved one struggled was overwhelming but I needed to work on this so that we could build on our new communication.  I have identified a few dos and don’ts that have worked for me and other caregivers as well.

DO:

·         Speak clearly and slowly directly facing them.

·         Short sentences or questions so as not to overwhelm them

·         Yes and No questions worked well for us.  I learned that asking, “Would you like water or tea?  versus “what do you want to drink?” decreased both of our stress level.

·         Patience, patience, patience.  Give them time to collect their thoughts and speak

·         If unable to speak, watch for facial expressions and body language.  Eventually you will develop a system for what is needed through gestures

·         Provide positive response to their attempts but remember they are not a child, so it is important not to treat them as such.

Don’t:

·         Shield them from conversations with others.  You may feel your protection, but you are limiting them.  Explain to family and friends the tips that you have found for your loved one.

·         Finish their sentences, unless they ask.  Remember, when you do they have to restart the process to answer.

·         Exclude from conversation.  When you talk about them in front of others as if not in the room, they can become depressed and withdrawn

·         Correct every mistake.  You will determine based on your relationship when and what needs to be clarified for them.  They are already embarrassed that they have trouble speaking.

·         Rush or pressure them especially in large groups.  Large group communication is fast, and many speak at the same time, this is overwhelming and again they will withdraw or isolate.

How about the caregiver?

Grief, frustration, anger, and lack of patience are common responses regarding communication difficulties.  What many never share is that you have also lost your communication with your loved one, who do you talk to and about what. You are thrilled that they survived the stroke but a part of them is missing.  As a spouse, I get it.  The days of discussing life choices and family decisions are now limited or not at all.

What can help you adjust to this new communication?

·         Acknowledge your feelings that they are not selfish or in any way negatively related to your loved one.  When we hold in feelings at some point they tend to explode, either physically or mentally.

·         Come to terms with the idea that you will see ups and downs with their communication

·         Because they want to isolate, you do not need to.  Make plans outside of the home.  If they are unable to be alone, ask others to stay with them.

·         Join a social network or join a support group with others

·         Speech therapy is essential for the loved one, but I encourage you to attend as much as possible.  You will be able to talk with the therapist and learn techniques that work for your loved one.

·         Look for other ways to communicate.  Several caregivers have shared that eye contact (remember the looks from parents that spoke volumes), music, having a routine and touch have made a difference.

You are not alone and Stroke Caregiver Connection was developed to support you.  If you need additional information, support or resources. Please reach out.

Finding your new purpose in life.

We should wake up each morning excited for the day. Will it be a peaceful day with everything going smoothly, or will we end up in the emergency room? Daily life can be draining, and lacking a purpose in life, apart from your loved one, can be harmful. A lack of purpose can negatively affect mental and physical health, as well as general wellness.

Life’s purpose is your own, leading reason for being—a key goal that provides meaning, direction, and fulfillment, often involving values, passions, and a positive contribution to something bigger than yourself, such as family, job, community, or spirituality, and it grows through your experiences. It’s motivating, helps with choices, and connects to better health, resilience, and a longer life, making life less stressful and more real. 

My focus was on my husband’s health after his stroke, which was a good thing.  After retiring, I gave up a lot of the activities I’d loved.  The impact of not having a personal purpose was significant.  But I, like many caregivers, prioritized others before myself.

I found joy in my husband’s survival of his stroke and was happy to care for him as he recovered. I know he’d do the same for me too.  He would frequently apologize, saying he was a burden. To be frank, I never thought that, but I can see his point.

How can having a purpose positively impact your life.

My mental health has improved because I have a daily purpose. Caregiving’s daily demands can overshadow a caregiver’s personal life. It’s harmful both to you and your loved ones.  It is possible that you will feel anxious, angry, or resentful. Research shows that having a purpose can decrease anxiety, reduce stress, and improve depression.

Many minor health issues developed into more serious ones. I also failed to take care of my physical health. I didn’t pay any attention to my physical and medical health. Because of this neglect, I experienced elevated blood pressure, ulcers, joint pain, and weight gain from poor eating habits, stress, and lack of exercise. I quickly understood that without a purpose, I couldn’t help my husband. My heart health has improved, and I’ve developed healthy habits thanks to my new health plan.

In the beginning, my primary concern was my husband’s health and safety. Each day presented either a fresh problem to fix or a hospital visit. It was never a good occurrence, but hardships or negativity. It didn’t take long for me to see that I was becoming negative, which I disliked. The situation was just normal post-stroke, and I knew I had no power to change it. The only thing I could control was my response. I have always wanted to be an advocate for caregivers and to educate healthcare providers. Discovering my purpose in life improved my ability to deal with challenges and setbacks. Support and guidance came from working with other caregivers, and I didn’t feel alone.

My life’s purpose has enhanced my well-being, vitality, happiness, and patience. 

How do you determine your life’s purpose?

It’s easy for some, what they always wanted, with the skills to do it. Gardening would be a good example. Wanting a perfect yard of flowers, you learn to design, read, and then plan. Come springtime, you will enjoy the outcomes of your work. I enjoy gardening; however, you should know that it needs weeding and maintenance. Whether it’s big or small, your life’s purpose is what brings you joy and gets you out of bed each day.

Most individuals need some thought and testing. I appreciate working with people experiencing hardship. Yet, what’s the implementation, and how can I do this and care for my husband? Now is the time to decide what’s important to you and brings the most joy as a caregiver.

After some research and my own self-discovery, I have found looking at the following four categories helped me.

1.      Strengths and passions: What are you good at? What activities make you lose track of time?  What makes you happy while you are in the process of doing it?

2.      Values: What really matters to you? What principles guide you?

3.      Past Experiences: Review your past. What were challenges and how you overcame them. What made you feel alive?

4.      Ask Questions: What is something you frequently share with friends that you would like to change?  What is something others comment on that you excel at?

I have faith that once you find yourself in your life purpose, your life will change for the better.

 How I can help you

As a care advocate, I’m available to other caregivers for consultations on various topics. Frequently, it’s a practical question, yet the real value is my consultation on your present and future aspirations. My healthcare background and caregiving experience are my strengths. Many people shared “I Get It.”

If you would like to arrange a consultation, either email lana@strokeandthespouse.com or go to my website www.strokecaregiverconnectrion.com and connect with me.

How do I take a safe, guilt-free break from my loved one’s care?

Being the primary caregiver is difficult, and others don’t always recognize it. The question that

always comes up is, how can I balance my needs with my loved ones? Can I take time away

without feeling guilty? Could someone else give them the same care? If I get away, how do I

keep them safe?

Someone you care about has experienced a life-threatening illness; in my case, my husband

experienced a stroke. Although he is recovering at this time, my journey as caregiver began that

day. The caregiving journey is unique for everyone, but one thing that spans across all caregivers

is the need for respite, time away, and knowing that they have someone who can provide care in

their absence. 

The initial, crucial step is to identify someone you both trust to step in while you are away. This

might be a grown child, a relative, a companion, or a service. Without the right tools, stepping in

as backup can be frightening. 

Once you’ve found your backup, you can start feeling guilt-free about needing time. Proper

planning is the foundation of a successful time away. “Plan for the worst and hope for the best”

is my guiding principle. It has helped caregivers feel more confident about their backup systems.

A plan of care is the usual name for the time-away plan. A simple way to give people

information covering the loved ones’ requirements.

Include in the Plan of Care, but not limited to:

• Provide your loved ones’ details and your contact information.

• A copy of their medical cards, doctors, and hospitals.

• Should you be unreachable, your healthcare proxy can make health care decisions, as allowed

  by legal documents. Your requests need review, and the care supporter must reach out. This

  mostly comes up concerning life or death and choosing “Do Not Resuscitate”.

• Medical History: A list of medical conditions and their onset dates.

• Medication details and administration times. Add specific instructions, like when to postpone

  taking medicine. There must be sufficient medicine available.

• Give a rundown of a regular day. List of favorite foods, activities, and times of sleep.

• How to cope successfully with daily struggles. For instance, anger, tips for providing proper

  nutrition (what they will eat), or things that they may try that are not safe.

• When to call the MD office versus calling 911 or going to the ER

Support Network

Your support network might include a few people when you identify it. Rest is essential for a

healthy, refreshed return to your ongoing care responsibilities. This is the moment for the

primary caregiver to ask for help, even if it’s difficult. A meeting with those who offer backup

care is my recommendation. This is difficult because of the primary caregiver’s sense of

responsibility and reluctance to impose. Be direct and candid with others. I’ve discovered that

this can make for a more productive chat and bring new solutions.

A few ideas of what needs to be discussed:

• Share any new information about their progress. Make sure you explain your request and

  show your appreciation for their willingness to help.

• Review the care plan and discuss it together. The support person’s input can often

  improve the quality of care.

• Put forth the question. What they can do and when they’re available. You might have multiple

  replacements while you’re gone. As long as communication exists, this will work.

• Carry out the plan. Organize your time off. This could be a day trip, or perhaps a week-long trip. Taking care of yourself matters more than your activities or destinations.

• Instruct your support person to send a simple daily text–a thumbs up–to show everything’s okay. Avoid calling often or trying to return sooner. It’s time to reorganize and rejuvenate. 

I’ve learned that support caregivers enjoy covering shifts. They spend quality time with their

loved ones and believe they’re helping the person providing care. Never refuse someone the

chance to give.

Stroke and the Caregiver, a resource for those suddenly assuming the role of caregiver. We carry

a myriad of responsibilities and no time or strength to step back and really handle the situation

before us. So why would you want to travel with me? My three decades of experience as a

caregiver, nurse, and case manager have enabled me to support many patients and families in

returning home after a health crisis. Now it has happened to me, on the other side of the

healthcare team, the family member. I am travelling on this journey with you, as a health

professional and a fellow caregiver. 

Website:

Stroke Caregiver Connection

Joys of Caregiving

We’ve adapted to this new chapter four years after Rick’s stroke. We all have bad days, no question. In my blog posts and articles, I give voice to caregivers and care partners, as well as sharing my story.  Caregivers face many challenges and are looking for support and tips to help them navigate.  But it is equally important for them to know that caregiving includes joy too.  I want to share some positive aspects of caregiving this week.

Time with your loved one

You were uncertain about their survival after the stroke.  Despite life’s changes, you now have the extra time you weren’t expecting.  You can now share and act on thoughts you never thought you could. You find joy in every day you have with your loved one.

Celebration of the small things in life.

In the past, I used to get upset by things that weren’t important. He skipped chores: no clothes pickup, no dishes, no evening plan. A health crisis shifts priorities, focusing on minor victories over daily routines. Big changes result from a series of small successes.

Focus on the present.

So many of us, including me, look to the future.  “When this happens, I will be happy.”  When a medical crisis occurs, you look only at the present, at what is happening now.  Post crisis, I learned that focusing on the present, what today brings, allows you to enjoy life’s small joys. Worry doesn’t change what’s coming, but joy makes now better.

Spiritual Growth

It’s simple to practice your faith when things are good.  We’ve all offered “I’ll pray for you” when others struggled; now you and yours need prayers.  At the peak of the medical crisis, I was extremely angry at God and distanced myself.  He never abandoned me. With God’s presence, we found peace, learned about suffering, and gained a joyful support group.  Deeper connections bring happiness.

Having a purpose

Everyone needs to feel like their life has meaning.  That they are contributing to the better good of others – this brings joy to our lives. Being a caregiver or Care Partner can be a very challenging role but also filled with joy and purpose.  Helping someone with love and compassion improves their life and yours.  If you weren’t here, what would happen to your loved one?  Where would you be without their presence in your life? 

Laugh at the challenges

Humor and laughter provide numerous health benefits for both of you.  Stress relief improved immune function and enhanced mental health. When caring for another, there are times when both of you just laugh at the absurdity of your new life.   From the outside, it may seem like gallows humor, but it is what keeps you and your loved one grounded on the day.  We frequently joke, “You can’t use the stroke card today” or he will use his stroke as a joke when uncomfortable.  Laughter is the best medicine.

Skills, you didn’t know you possessed.

As I talk to so many new caregivers, I frequently hear, no way can I care for my loved one. I am not a nurse, and then there is joy on their faces when they learn the needed skill. Life is funny. No matter how much we plan, when that changes, we find an inner strength to learn and master. Experiencing the joy of accomplishment and helping others changes everything. In a crisis, we all feel helpless, just watching. However, we can make a difference with our new skills.

New friends at support groups

This is a group nobody wants to join, yet they’ll save you when necessary. Finding joy in shared experiences, tears, and laughter with others. I’m often told that it helps to talk to someone who understands, and when I depart, they’re smiling, not feeling isolated.

Bringing families and friends closer

Time moves swiftly; before you realize it, dinner plans are old news. Your loved one experiences the same thing. It’s joyful to take part in normal daily activities. The importance of family grows during holidays and regular days. After fearing loss, you can now enjoy time you thought you’d never have. Joy stems from celebrating every day as if it were your last; it’s true.

I am available to be your sounding board. Thank you for visiting the blog because when we support each other, life can be easier.

My new book “Stroke and the Caregiver” is now available on Amazon.  Each chapter provides additional tips and support.

Feeling isolated as a caregiver - you are not alone!

The other evening as I was paging thru social media and seeing all of the support for stroke survivors, I was pleased this is happening but it also brought back that the caregivers/care partners of the survivors have very limited support. Being the caregiver or care partner is very isolating and not much is written about this or posted on social media. This week, let’s tackle isolation. I will cover what it is, how it feels and some strategies that I have learned along the way.

What do I mean when I share that caregivers/care partners can feel isolated?

Caregiver/Care Partner isolation stems from providing care for your loved one post stroke. Your focus is solely on their care and making sure that they are in a safe and healthy environment. Before you know it, the days turn to weeks, weeks to months and you find a year has past and you have not been out and about socially.

Caregiver isolation is when you withdrawal from your usual habits, have a lack of support or limited social interactions which can lead to loneliness and depression. It is not something that you plan but the life change post stroke has required that you make adjustments.

Why it happens?

As I have experienced and many of the caregivers/care partners have shared it happens slowly. “It sneaks up on you and one day you are at home and feel lonely and depressed due to isolation” Isolation can be caused by many things but the following four seem most common.

Responsibility for your loved ones care

As with all chronic conditions, each individual has a different level of care needed but no matter the need the caregiver/care partner feels the responsibility for the care. Trust me, we are not martyrs, we love these individuals and are thrilled they are still in our lives but it is a life change.

You can plan your week but there is no guarantee that is how it will go. After several failed attempts to care for yourself, you tend to give up and accept your isolation. Many have shared, their big outings is to the MD office.

Your loved feels that they are a burden and in some ways that is true but the reality is that as caregivers, we would do anything to help them because we know that they would for us.

Loved one can not be left alone

Based on the severity and limitations regarding the stroke will determine if they can be independent and their level of independence. With both physical and mental limitations, a plan needs to be developed so that caregiver/Care Partner is able to get away. Providing 24 hour care 7 days a week is too much for anyone. That is why, we has health care workers, have shifts.

The isolation occurs because you can not safely leave them alone. As with your loved one, you also don’t want to be a burden on others. As the primary caregiver/partner you understand their needs, have a routine and fear what could happen if you are not available.

Luckily, my husbands limitations are not physical so he is able to be more independent. The limitation we live with is more behavioral changes, poor memory, unable to remember or do typical task around the house or not really an active participant in life. Other caregivers/partners have share the same issue and feel isolation because they have lost the person they were before.

Feeling guilty that your loved one can not participate

Many of the social and physical activities that you both enjoyed together has changed. For us, dining out is no longer a fun outing. Due to his stroke he no longer enjoys food as it taste bad. Spending time with friends is a challenge because the conversation moves to fast, he no longer can quickly recall information and he is embarrassed by this changes. Apathy prevents him from wanting to try new things, take an adventure, or think of activities we would enjoy. Lastly, touch is difficult, due to his balance issues, holding hands while walking, is not safe or comfortable for him.

I get what you are feeling. When planning events, you want to include your loved but knowing they would not enjoy prevents you from participating. Non caregivers have shared “Go out and travel alone, if he is not able” The point is that I miss not being with him, so I would rather stay home”

The fatigue associated with travel or going out

Your loved one is better to the point were you can travel or go out but the work and fatigue for you is overwhelming. The relationship is no longer 50/50, where each person has their roles but you alone must do it all - plan, pack, finances, and prepare for any medical issues. Although, I love to travel, I also need to weight the cost to me for the trip.

The fatigue is not just the physical but also the mental. You are doing this alone. Worried that their will be an issue, that your loved one will not enjoy or be able to handle, and missing out on adventures, you hoped to take.

The stroke survivor is not the person they were pre stroke

Even though you are never alone - you are lonely. Friends and family don’t always think about the need to reach out, Not because they don’t care but they know your loved one’s limitations and that he/she may not enjoy. I love when I get a call to come over, have lunch, or join us for a fun event.

Learning who this “new” person is and how they click takes time. They can retreat from life, become distant and communicate less. Learning what they enjoy that both of you can participate in. And lastly, being able to let go of the past as well as your future plans that you had.

So how do we handle this uncertainty? What is the secret tip that we need to know? or when will your life ever feel “normal” ? I laugh at the word “Normal” = What is NORMAL???? I really don’t think anyone has the cure for us but I can share what has helped.

What strategies can help me feel less isolated?

Talk to someone who gets it.

I shared this a few months ago but it deserves repeating. The feelings we have are not easy to share. I know I feel petty or ungrateful that he is doing well and I am sad. Embarrassed because the situation could be so much worse. After all, they had the life changing event, which they have no control over.

When I talk with others in the same situation, I feel relief. Not that we have fixed anything but you no longer feel alone, honestly share without feeling like a “bad” person, laughing at the situation, praying for support together, or sitting in silence. Life expectations is a luxury and unrealistic. The truth - Enjoy the moment, let go of the expectations and hold on to what is for today.

Share with family and friends how life has changed and how they can help.

I will be honest, this is the hardest step for me, I don’t want to be that “negative” person or a burden. So for me this is a work in progress. Caregivers/Care Partners have shared that this step has made a big difference. Friends and family are very willing to help, provide solutions that you had not thought of and be a sounding board. Don’t follow my lead - step out!

Wake to a personal purpose each day

No one plans to be a caregiver/Care Partner until that moment when life changes and here you are. Think about what gave you purpose and joy prior to your loved ones stroke and what areas can you tap into. For me, I love helping individuals going through a difficult time (Caregiver from birth) and that is why I became a nurse. Post stroke, I realized that I still had something to give back, although I needed to retire, I found my purpose with my books and Stroke Caregiver Connection”

I takes time to find your new purpose or to dust off an old purpose that you had wanted but never did. I know you can do this - I didn’t think I could but I did and it truly helps the feeling of alone and isolated.

I am available to be your sounding board. Thank you for visiting the blog because when we support each other, life can be easier.

My new book “Stroke and the Caregiver” is now available on Amazon.  Each chapter provides additional tips and support.

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!

Like you, I love my husband and want the best for him at all times. This is never the question. The question is how much can I handle and how can I continue to handle long term?

Literature shares information on Caregiver Fatigue or Burnout but this is different. Yes you may feel fatigue and burnout from time to time but this is an overwhelming dread of your future with your loved one. The relationship has changed. I hold on to those moments of laughter, wellness and companionship. Like you, I know that these moments will not last forever.

What causes this feeling of dread for the future…

• Frequent medical issues for your loved one. Doing everything you can to maintain health and yet issues arise out of your control. Worse, your loved one not doing the things to keep themselves healthy.

• Unrealistic Expectations: Believing they can single-handedly manage all aspects of their spouse's care or having unrealistic expectations about their spouse's health. The stroke survivor wants to be independent, healthy and their old self.

• Lack of Control: Feeling overwhelmed by the uncertainty of future medical issues and lacking resources, time, or energy. 

• Social Isolation: Losing connections with friends and family due to the demands of how your loved one feels or is doing that particular day. Isolation is a common defense mechanism for them but challenging for us. Whenever my husband participates in an activity outside the home - I know that the next 24-48 hours will be lonely. He will need to sleep and shuts down all communication. I love when he has outings but sometimes the price paid is hard. 

• Emotional Distress: Dealing with the emotional challenges of witnessing a spouse's decline, experiencing grief, and facing conflicting emotions like love and resentment.

So how do we handle this uncertainty? What is the secret tip that we need to know? or when will your life ever feel “normal” ? I laugh at the word “Normal” = What is NORMAL???? I really don’t think anyone has the cure for us but I can share what has helped.

Talk to someone who gets it. The feelings we have are not easy to share. I know I feel petty or ungrateful that he is doing well and I am sad. Embarrassed because the situation could be so much worse. After all, they had the life changing event, which they have no control over.

When I talk with others in the same situation, I feel relief. Not that we have fixed anything but you no longer feel alone, honestly share without feeling like a “bad” person, laughing at the situation, praying for support together, or sitting in silence. Life expectations is a luxury and unrealistic. The truth - Enjoy the moment, let go of the expectations and hold on to what is for today.

I am available to be your sounding board. Visit www.strokecaregiverconnection.com to connect.

Thank you for visiting the blog because when we support each other, life can be easier.

My new book “Stroke and the Caregiver” is now available on Amazon.  Each chapter provides additional tips and support.

Thank you for your time and welcome

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. We were able to navigate the physical changes and the adaptations to life fairly easily compared to dealing with the personality changes. Because he looks so good physically and can fake a normal conversation with others for a short period, I frequently hear “He looks great, you are so lucky.” I am lucky that he is doing better buy that doesn’t mean that everything is back to normal. I thought I was alone thinking this but after visiting many support groups - this is a universal issue.

Common personality changes you may experience are anger, memory loss, impulsiveness, lack of motivation, depression, anxiety, loss of social inhibitions, changes in understanding social cues and changes to your marital life. Not everyone has all of them or even some of them but I found every caregiver is dealing with at least one change.

How as a caregiver deal with your loved ones changes? Let me share some ideas that worked for me and others I have spoken with.

1. Let go of the past. Both of us have changed since the stroke. The person we were pre has been dealt a blow and it takes time to find your sea legs.

2. Make a daily commitment to this new life. A group member shared ”Each morning I wake, I thank God my loved one is with me and that we will have a great day” We all chuckled when she shared not all days are great and we want to kill each other but we had that prior to the stroke.

3. Don’t expect them to do activities that they did prior to the stroke. Another group member shared “She gets angry when family tell her what she should be doing. They want her to walk a mile a day - she has never walked a mile in her life. Now she gets angry with them but in the past she would complacent”

4. Share your frustrations with a close friend. Tell them I know we can’t fix this but I just need to vent. Sharing with other caregivers helps the most.

5. Some of the frustrations with their personality changes may not be due to the stroke. As we get older our filters tend to change. When you see that, talk to your loved one. This is not acceptable but be willing to hear about your own personality changes as well. (Ouch - that hurts when they share with us but also good.)

Thank you for visiting the blog because when we support each other, life can be easier.

My new book “Stroke and the Caregiver” is now available on Amazon.  Each chapter provides additional tips and support.

Thank you for your time and welcome

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.

• You might feel like a nag if you remind the stroke survivor too often. This leads to their frustration and, regrettably, anger towards us.

The next day, they may have no memory of your special life event.

• You might get messages—invitations, schedule changes, or last-minute appointment updates—or you might not.

• The caregiver is now in charge of everything in both lives.

Tips that I have used:

• Try out different ways of communicating. For example, my system is to use a wall calendar, mark it with a sticky note, and review it daily for pending tasks.

• Following a routine is essential. If you can, try to maintain consistency in your schedule and actions.

• Maintaining organization in your home and life. Keeping items organized and in their designated places increases a survivor’s independence.

• Remove yourself from the situation if you’re overwhelmed.

When we support each other, life can be easier.

My new book “Stroke and the Caregiver” is now available on Amazon.  Each chapter provides additional tips for the backup caregiver. 

Thank you for your time and welcome

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

Tip #2: Books online and in Bookstores.

This a definite challenge. When I looked, I found several books but mainly geared towards the stroke survivor and not the caregiver. Along with my book, the following have been useful. The difference is that they are not from the perspective of a caregiver.

“Stroke and the Caregiver” by Lana Wilhelm

This book is written by a caregiver/health professional for another caregiver. “The Stroke and the Caregiver” is a resource and guidebook for caregivers. Emotional exhaustion is a common experience for caregivers navigating the complexities of stroke recovery. Personal stories opening each chapter address caregiver challenges and offer guidance to primary caregivers, plus support and information for those not primarily involved in caregiving (Your back-up). The penultimate chapter contains a letter from a stroke survivor to their caregiver. Each chapter includes the tools I used in that chapter. Treat this as a working notebook, keeping it close at hand.

"Hope After Stroke for Caregivers and Survivors" by Tsgoyna Tanzman

 This book is widely praised for its comprehensive approach, offering practical advice for both caregivers and survivors, and is sometimes referred to as the "Stroke Bible". 

The author is a speech Therapist who has worked with stroke patients. Good information regarding stroke but very little regarding the needs of the caregiver.

"The Caregiver's Guide to Stroke Recovery” by Lucille Jorgensen RN

This book focuses on the caregiver's well-being and offers specific strategies for managing the challenges of stroke recovery.  Some good tips provided but the author has not had first hand experience, so many caregivers concern I had were not addressed.

"Lights, Mirrors, Action: A Guide to Transforming the Lives of Stroke Caregivers"

This book delves into the science of neuroplasticity and provides practical, step-by-step guidance for implementing home therapy programs. Again, good information but written more for a health professional.

Tip #3: Work with your Stroke Program Nurse

Not only will they provide needed information but are also aware of potential resources and support groups to assist you. Typically the nurse will provide both verbal and written booklets. There focus is the stroke survivor but are in tune with caregivers.

“Tip #4: Join a support group

Most support groups are geared towards the survivor but recently I am seeing more groups for the caregiver. I am happy to speak with any caregiver that is looking for or wants to start a group. The best source is to discuss with the stroke support leader that you would like space that caregivers can talk while the stroke survivors have their meeting. The America Stroke Association has a support group finder.

Finding the right support group is critical. You may to visit several before you find your group. Another group that is forgotten is to join a grief support group. I know you are thinking my loved one is still with me, but you are grieving the loss of a lifestyle, social activities and can be financially to name a few. For everyone it is different

“Tip #5: It’s Okay to be overwhelmed = You are not alone

 This is a new life that you never trained for or expected. You will make mistakes. You will read or talk to someone that has it all together “on the outside” and question yourself. Reach out, YOU ARE NOT ALONE!

If there’s something you’re struggling with right now, drop your thoughts in the comments. Let’s build a space that supports caregivers like you.

My new book “Stroke and the Caregiver” is now available on Amazon.  Each chapter provides additional tips for the backup caregiver. 

Thank you for your time and welcome

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.”

Tip #2: Be Emergency-Ready”

 “Have the emergency contact list nearby. Know where the medications are, and what to do if something unexpected happens. A little prep goes a long way.”  Tip for the main caregiver, make sure you have all the information needed easily available.  If you are not sure what to provide – check out “Stroke and the Caregiver” for additional information and support.

Tip #3: Keep it Respectful”

 “Remember, the stroke survivor is doing their best. Speak kindly, explain what you're doing, and always treat them with dignity.”

“Tip #4: Communicate with the Main Caregiver”

 “Ask questions if you’re unsure. And when they return let them know What went well? Any changes in behavior or mood?” and thank them for allowing you time with the stroke survivor.  It can be difficult to hand over the caregiving responsibility and knowing it was not a burden to you means the world

“Tip #5: It’s Okay to Not Be Perfect”

 “You don’t have to do everything perfectly. Just being there—present and caring—makes a huge difference. And don’t forget to care for yourself too.”

If there’s something you’re struggling with right now, drop it in the comments. Let’s build a space that supports caregivers like you.

My new book “Stroke and the Caregiver” is now available on Amazon.  Each chapter provides additional tips for the backup caregiver. 

Thank you for your time and welcome

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.

I am not a medical professional; how will I be able to provide care and keep them safe?

Most family caregivers are not medical professionals. The key is to take advantage of as much training as possible. During inpatient rehab, ask the therapist to let you do as much as you would do at home. Training and practice make all the difference.

What is my role during inpatient rehabilitation?

The role of the caregiver is to prepare the home for discharge, attend trainings, practice with the therapist, and to prepare themselves for this life change. Evening finds the stroke survivor depleted from a full day of therapy and not wanting company. Home is where you should focus on yourself; they’re in a safe place. 

My children and family flew in when he had the stroke, is it ok for family members to return home?

It all comes down to how the patient recovers, so you should discuss this with the neurologist. The return home of loved ones usually coincides with the recovery and retraining of the stroke survivor. Primary caregivers must maintain open communication, honestly share progress and needs, and plan for ongoing support and respite.

Each week, I visit with new caregivers and their families. The number of questions and concerns they have been overwhelming but taken one question or concern at a time helps. For more support, order “Stroke and the Spouse” on Amazon.