Building a support Network

Caregiving is not a solitary journey. We'll explore the importance of building a strong support network, both online and offline, and provide resources for connecting with other caregivers who can offer understanding, empathy, and practical advice.

When I was living those days in the hospital and then rehab, prior to bringing Rick home, I was at a lost for what support I needed. To be honest, I was living moment to moment. What I needed was a way to support both of us and the family financially, physically, emotionally and mentally. I was scared, exhausted and overwhelmed.

As a nurse, I thought that I should be able to handle all of this, after all I had been trained and work as a nurse for over 40 years. But to my dismay, as a spouse I was like a duck out of water.

The first year and a half, I tried to do it all. I also didn’t want to be a burden to anyone else so I never asked for support or even made the time to go to a support group meeting. Any free time, I would try to sleep and prepare for the next day. My reality was Rick’s reality and I placed my needs second.

And then the moment arrived that I realized that I could no longer put myself second if I wanted to be able to care for him and my family. My blood pressure was elevated, I had developed 3 ulcers, gained weight from stress eating and felt I had aged 10 years.

Don’t make the same mistake I made - reach out for support early and often.

So why is support so important?

The CDC shared the following information about caregivers. ..

For the full article, www.cdc.gov › features › supporting-caregivers

“Caregivers are family members or friends who typically provide unpaid, long-term, community-based care and assistance to older adults and people with chronic health conditions or disabilities.  Caregivers help with a variety of routine tasks such as shopping, paying bills, bathing, dressing, and managing medicines.  They are often a source of emotional support and companionship for care recipients.”

Caregivers: A Snapshot

• 58% of caregivers are women.

• Almost one-third of caregivers provide care at least 20 hours a week.

• Caregivers typically learn as they go and aren’t formally trained.

• 79% of caregivers care for adults aged 50 or older, and 76% of care recipients are aged 65 years and older.2 

• One in 6 non-caregivers expects to become a caregiver within two years.

• Caregiving is also a public health concern because it can lead to physical, emotional, psychological, and financial strain.  Providing personal care and helping with behavioral and cognitive issues can be stressful for caregivers and result in depression and anxiety. Nearly 1 in 5 caregivers reports fair or poor health.6 Caregivers often neglect their own health needs, increasing their risk of having multiple chronic conditions. Nearly 2 in 5 caregivers have at least two chronic diseases:

  • 1 in 7 caregivers has heart disease and/or stroke.

  • 1 in 5 caregivers aged 65 and older have coronary heart disease and/or stroke.

How to Support Caregivers?

• Help them with errands, chores, and other tasks.

• Provide emotional and social support.

• Negotiate times to check in on them.

• Make sure they are managing their own health care needs.

• Help them create and manage a care plan for the person they care for.

• Encourage them to seek mental health services if necessary.

If you are a caregiver, read about respite care.

Resources:

This week I would like to introduce the following support services:

VA Caregiver Support Program Home

www.caregiver.va.gov

The Department of Veteran Affairs (VA) Caregiver Support Program (CSP) offers clinical services to caregivers of eligible and covered Veterans enrolled in the VA health care system. The program’s mission is to promote the health and well-being of family caregivers who care for our Nation’s Veterans, through education, resources, support, and services. There is a CSP team CSP Team Locator located at every VA facilities .

National Family Caregiver Support Program

www.ncdhhs.gov/assistance/adult-services/family-caregiver-support

The NFCSP offers a range of services to support family caregivers: Information to caregivers about available services. Assistance to caregivers in gaining access to the services. Individual counseling, support groups and training to assist caregivers in the areas of health, nutrition and financial literacy.

Family Caregiver Guides - AARP® Caregiver Resource Guide

www.aarp.org

Make Your Caregiving Journey Easier with AARP's Family Caregiver Local Resource Guides. Find Caregiving Programs, Services & Agencies in Your State with AARP's Resource Guides.

There are resources available to support caregivers.

Centers for Disease Control and Prevention Caregiving

The Public Health Center of Excellence on Dementia Caregiving

Family Caregiver Alliance

Caregiving Resource Center

The Caregiver Connection…Because you care!

How to deal with short term memory loss?

Real-life stories can be a powerful source of inspiration. This week’s blog features how Rick and I handle his short term memory loss. Through trial and error, we have found some ways to decrease the frustration that we both feel with the challenge of memory loss.

Problems with memory and thinking are common post stroke. Memory loss is most common immediately post stroke and like most stroke symptoms, recovery occurs within the first few days to weeks. Unfortunately, for many the loss of short term memory is long lasting. What we found is that it is not 100% loss of memory but forgetfulness of what has been said or recollection of current events.

Here is real life:

I placed a large calendar where he leaves all of his stuff and looks at each morning. All activities are on the calendar. If he is out with friends, I immediately ask upon return, “Any new dates to place on the calendar?” Timing is critical as he may forget later . It is also helpful if friends text you with plans as well.

Even with the calendar, issues can happen…

For the last 2 years celebrating my birthday has been limited as Rick was not able to plan or shop but this year he made an effort. I love live theater and my girlfriends and I had planned to see “Tina”. I spoke frequently about how excited I was to see the play and had placed it on the calendar.

The morning of my birthday, I came downstairs to flowers and a card. I was thrilled that he remembered. Once I opened the card and read the gift, I had to quickly decide how to handle. Rick had gotten us tickets to see “Tina”

I shared that I already had tickets to see the show with the girls but these were much better seats and I was excited to go with him. He shared that he remembered how I wanted to see the show and that I frequently spoke about it. He was so happy that he got me a gift all alone and something I would want.

I missed going with the girls but the gift of him remembering and thinking of something special was one of the best gifts. We had a great time at “Tina” That day, I learned what the true meaning of the saying is “It’s the thought that counts”

Additional tips…

• Have a routine by doing routine tasks at regular times during the day

• Break down tasks into simple steps. Do not overload with too many task at once (1-2 at a time)

• Make a habit of placing things in the same location. I am terrible at moving things so this has been a challenge

• To do list. Share what needs to be done immediately.

• Driving directions are hard to remember. Utilize a GPS system

• Cherish when they do remember and remember they are more frustrated with the memory loss.

When can I allow the Stoke Survivor to 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:

• I feel so much better. I can run to the store for you.

• You have been doing so much. Let me run some errands.

• There are guys at rehab that drive themselves and they are in worse shape.

• I can drive. How can I get better if you never let me try? You are so overprotective.

• To others - She won’t let me drive even though I can with no problems.

• Where are the keys? I just need to run out for a minute.

• I am not an invalid. I can drive.

Being his caregiver was tiresome, the constant battle over driving, I felt like the bad guy. There were times when I wanted to throw the keys at him and let him go because his behavior exhausted me. But I didn’t. I had a responsibility to Rick and others to keep them safe. Remember, saying no is the right choice, but as with the teen, they are relentless.

How to determine they are ready to drive

For the caregiver, this is one of the hardest determinations I would make. We had been through a very difficult life change, and I was overprotective. With Rick, we did not know the cause of the stroke, and therefore, did not know if another stroke could or would happen. I needed to rely on several resources in making this decision, such as our healthcare team and family.

Many stroke survivors return to driving with no type of formal safety assessment. An on-road driving test is the most thorough way to gauge a driver’s ability. The test takes about forty-five minutes and involves driving with a trained evaluator or driving on a computer simulator. Driving provides a sense of independence and freedom, but safety takes on greater importance poststroke.

One of the best resources for driving after a stroke was the stroke.org site. For more information, please visit your state’s department of motor vehicle website.

At the nine-month mark poststroke and many requests from Rick to drive, I started to reintroduce driving. His physician recommended a slow start, and he was not allowed to drive alone, so we did things in steps like how we taught our teens to drive.

Step 1: Practice in an empty parking lot.

The most arduous tasks are starting and stopping the car both easily and then abruptly. The major concern was reaction time behind the wheel.

Step 2: Set guidelines for driving.

Initially, only during the day and only during low traffic times. We live in a neighborhood with children and have a responsibility to keep them safe.

He had to demonstrate good reaction time before being allowed on the roads.

The physical therapist had approved that he was ready to drive before we drove on the road.

Step 3: Practice driving to places that are very familiar.

We practiced driving to church, the store and to our friend’s house. When practicing, I recommend that only you and your spouse are in the car with no distractions (no radio or conversation at first, as well).

Step 4: Practice driving to places that require more thought and directions to get to the location.

Warning: Your loved one will likely get lost. Be patient and see what they can do before you jump in. We had a twenty-minute trip that took an hour at first, but we arrived safely.

Step 5: Once approved to drive alone by the physician and/or by meeting your state’s driving requirements.

Start with small trips to well-known places alone. Rick stayed within a five mile radius from home and there were no highways.

A key component is communication. Rick needed to always have his phone with him and to call when he arrived and then when he left to come back home. I found he was ready to drive long before I was ready to hand over the keys.

Finally, letting go:

Rick has been driving independently for some time without issues. During this time, we both learned a few tips to ensure safe driving. Rick has been driving independently for some time without issues. During this time, we both learned a few tips to ensure safe driving.

1. Assess fatigue level prior to operating a vehicle.

2. Signs of fatigue for Rick are slow or slurred speech, difficulty finding words or difficulty walking. He does not always recognize fatigue and will want to continue to drive. This remains my ongoing role.

3. After any outing or social event lasting over three hours, Rick would not drive and agreed to be the passenger.

4. Have a plan before you leave the house.

5. We determine how long he will drive and when I will be the driver.

6. We continued with the code word “Albert Einstein” to alert me when he was tired and needed to go home.

7. I drive when we are going to an unfamiliar location for the first time.

8. We always use a navigation device when driving. These are great verbal cues for Rick on where to go and early alerts on when a direction changes. I have become the navigator on trips.

·     

Holiday Survival

I hope that you all had a wonderful week and have found time for yourselves. We are starting to enter the holiday season and my typical activities have changed.

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 my 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.

The holidays have changed since Rick had the stroke, his desire to fully participate has left but he still loves when the kids and grandkids arrive. The first year after the stroke, I set myself up. I was convinced that the holidays didn’t need to change - I could do it all.

I did my best but by January 2, I was tired, crabby and depressed that it didn’t go as planned. So this year, I have a much simpler plan.

Holiday Survival Plan

• Review what you want to give. After the year we had, the gift of being together is so much more important than the latest gadget. I was worried that the family would be upset with the change - they were thrilled.

• ·Shop early and wrap those gifts when you bring them home. This has helped with the last minute crazy of wrapping and also keeping track of what you bought. Every Christmas, I would always have a gift tucked away that I forgot.

• Instead of gifts, give experiences. With Rick’s limitations and health scare, memories made will last longer than a gift.

• Others love to entertain as well. Be gracious and enjoy the holidays at another’s home. It is a gift to them to be able to celebrate with you.

• Decorations at the house. This year, Rick will be supervising the outside lights. Plan a family day to decorate, serve chile and dessert. This will be a new tradition.

• Plan for naps. Schedule the holiday celebrations to include rest. Rick can handle about 2 hours at a time in larger groups.

• Do not over plan. Not every tradition from the past needs to be carried over. Really, How many cookies do I need to bake and eat? Does dinner need to be a sit down dinner or appetizers through out the day? Do you need to see everyone over those few days? Spread out visits and fun over a longer period of time so that everyone can enjoy.

• Lastly, the season is not about what you did but rather the birth of Jesus. Celebrate the love He provides and be grateful for all of your blessings.

Care Partner, Caregiver, or Stroke Survivor compassion is necessary!

Compassion is defined as being concerned for the sufferings of others. That is a very accurate definition and made sense prior to the changes that occurred post stroke.  We are asked each day to show compassion towards our loved ones, others, and ourselves.  When the day goes well, and we get a small taste of the past or a glimpse of our future dreams – being compassionate comes easily.

Why is compassion so important for a relationship? Henri Nouwen wrote in his book “The Way of the Heart”, Compassion can never coexist with judgement because judgment creates distance and distinction, which prevents us from really being with the other.

We know that compassion is important but how do we become or stay compassionate when we are ready to throw in the towel?  You get that they don’t mean to “drive us crazy, it is out of their control” BUT… the anger at you, having to do everything around the house or explaining a movie, a message, or a task over and over.

When my husband was in the ICU, I was able to see a side of him that I had not seen before.  He is an engineer and sees the world very black and white, but the helplessness caused by the stroke opened his eyes to open to others not seen. 

Each day, a lovely woman would come into the room and pick up the trash and complete her housekeeping duties.  All around her was a swirl of activity and no one really noticed her role in my husband’s recovery.  He would wait for her each day with “Hello and thank you” Repeatedly, he shared that it bothered him that she went about her day unnoticed and that he felt that way as well – unnoticed a shell of himself.  When the time came to leave the ICU, I wanted to thank the staff, but he asked that I get a card and flowers for the lovely housekeeper.  She cried as we all did.  Compassion for others provides as much for that person as it does for you.

How we did we remain compassionate when we didn’t want to?

HUMOR – When things went wrong or I was at my limit, we would laugh at the challenge ahead.  Everything that happens post stroke is so very serious, and you may feel uncomfortable at first but a good laugh by both always helped us.  When times get tough, I would tease him that “Today was not the day to pull the stroke card!”  It broke the tension, and we could restart the day.  Sometimes, you just need a good belly laugh.

TRY ON THEIR SHOES - Attempt for an hour not being able to speak, not using your right side or making a list of all the things you do in that hour that you would need someone else to help with.  This was a true test.  After only an hour, I was frustrated and could not even imagine this 24/7.   

BUT – I have shared this before, but it remains a great tool.  Don’t look at what they cannot do BUT rather what they can do?  Don’t assume you need to do it all, together determine what their limitations are and what is possible and then stand back and let go!

You are not alone on this journey; I and other care partners are here to support you.

Stroke and the Spouse Mission

To impact, guide and improve the lives of Care Partners and Caregivers through education, support and resources

Care Partner Question How do I recapture love after the stroke?

Time passes and your loved one has been home and the two of you have started to adjust to your new routine and the limitations of the stroke.  So many aspects of your life have changed, as well as the person that came home from the hospital.

As the care partner, you are always alert to their needs and safety.  At this point, I remember thinking, am I still a wife or simply the person providing care.  With the stroke, so many changes, especially intimacy.  This is an area that is never discussed with the couple, and I felt foolish discussing it since I felt I should just be content that he was alive.

So, let’s discuss…

Post stroke, the stroke survivor can experience personality changes. Stroke impacts the brain, and the brain controls our behavior and emotions. You or your loved one may experience feelings of irritability, forgetfulness, carelessness, or confusion. Feelings of anger, anxiety or depression are also common.

An excellent site is…  https://www.stroke.org/en/about-stroke/effects-of-stroke/emotional-effects-of-stroke/personality-changes-post-stroke

As the Care Partner, you remember the person that you fell in love with and had defined your relationship.  Now, your world turns upside down and you start to feel guilty thinking “How can I fall in love with this NEW person, I loved the old one?” 

Like many of you, this happened to me.  Due to the stroke, physically, touch was difficult for my SS.  His right side was impacted and if I would hold his hand or touch that side of his body he would pull away.  Physically, he was focused on just being able to walk, so that last thought was having sex.  But intimacy, is not defined only by having sex, it is so much more and so much deeper.

What can cause problems with sex after stroke?

Emotional Changes – Depression, loss of independence, your SS no longer feels they have the same relationship with you (Caregiver versus spouse), or embarrassment over the physical changes.  Some people avoid sex because of a fear that it will cause another stroke.

Relationship Changes - Role’s change, communication difficulties, lack of confidence and self-image

Physical Change – muscle weakness, sensation changes (pain, numbness, or tingling), tiredness and fatigue, hormone imbalance, stroke location, other medical conditions (diabetes or heart disease), and medications.

Behavior Changes – A stroke can damage parts of the brain that link to emotions.  Some become angry or irritable, more sexual or lose inhibitions, or inappropriate behavior.

 What you and your loved one can do?

An excellent site is…  www.stroke.org › en › about-stroke Intimacy after stroke | American Stroke Association

Some quick tips…

Talk to your physician to determine the actual cause of the issue and potential solutions.

Talk about how you are feeling and your needs with your loved one.

How can you love this new person again and enjoy intimacy?

Intimacy is not just sexual but connecting deeply with another person.

Focus each day on the blessings in the relationship.  It could be a quick laugh together or a great day.

Share experiences such as listening to music, praying together, playing games or cook together.

Seek adventures or new experiences, such as visiting museums, local attractions or revisit places that you both enjoyed.

Indulge in each other’s favorite things.  My husband loves to read – read with them and then discuss the book.

Stroke and the Spouse Mission

To impact, guide and improve the lives of Care Partners and Caregivers through education, support and resources

Care Partner Care Giver Stage: Loneliness and Depression

I had always thought of loneliness as a sadness due to lack of friends or company. So, how could I experience loneliness when surrounded by family, friends, and healthcare providers for many weeks and now home with Rick daily. I learned being lonely, while never alone, is a unique type of loneliness. The entire world is flying past you with the typical day-to-day issues you thought were so important until life priorities changed. No longer did I care if he remembered a task that I had asked him to do a million times, or that he was not as attentive as other spouses seemed to be. He was my world, and I was losing him.

When asked how I was doing, I was at a loss for words. I felt I had no right to complain or feel sorry for myself. He had the stroke, and I was healthy. The answer would always be: “I’m good, just a little tired. I just need to count my blessings.” With this response, I thought that I was protecting myself from dealing with my feelings, but I was pushing others away and closing doors of support. Everyone deals with this stage differently, but I think the loneliness while never alone is universal when a caregiver.

What work for me during this phase.

As Rick and I dealt with the issues of depression, residual stroke damage, or current physical changes, we needed to define a better approach to have a full life. Slowly and safely, we tried new options and have taken him out of his comfort zone. Our marriage is not the same, and we are still hoping for more recovery, but we have learned to adapt. Based on my experience, I suggest the following to be “less lonely while never alone.”

Seek advice from others.

This is the motivation for this book. It was difficult to find resources to connect with. I was looking for ways to better communicate with Rick. Working with the speech therapist was helpful. She shared his limitations and information on Rick’s potential. She helped me to identify very positive steps that I might miss because they seemed so small.

Be honest with your loved one.

My tendency was to shield him from life stress. As I witnessed his progress and saw the challenges that he had, I would minimize my feelings in comparison. Don’t do as I did. Our spirit also needs to recover. Part of Rick’s recovery was to learn his new role in the marriage, and the only way that he could take part is with my honest feedback. This required listening to his concerns and together developing a plan that worked for both of us.

See a therapist, counselor, or spiritual advisor.

This can be a long journey. I eventually found a woman that I could connect with and being able to share my life with her helped. Talking to a professional is beneficial because I could share all my thoughts and fears without guilt, and then find new ways to cope.

Plan a daily physical activity.

My daily walk is around my neighborhood. I listen to music and let my mind float. This helps to clear the cobwebs and gives me a sense of peace. Being the caregiver is time consuming. The days seem to never allow for time away. Initially, I would only walk around our cul-de-sac, checking in on Rick after each round. Now I can go for a 45-minute walk.

Plan an outside activity weekly.

Getting out of the house was critical. Dining out was not an option for us since Rick had issues with taste, but there are so many activities that are handicapped accessible. Initially, we would just go for a drive and talk.

Set small goals for you as a couple.

Our life will never be the same, but it still can be good and sometimes better than expected. When he first came home, my expectations were way too big–we would be back to “normal” in a year. This only set me up for failure. Start by setting weekly goals and then monthly.

Weekly goals: eat dinner with a guest or family member, watch a movie together, or share one positive thing with each other daily.

Monthly goals: Go out with friends, have friends over, go for walks in the park versus around the house, add in household duties and take part in family decisions.

Stroke and the Spouse Mission

To impact, guide and improve the lives of Care Partners and Caregivers through education, support and resources

Stroke Survivors tips for the Caregiver/Care Partner

Dear Caregiver or Care Partner,         

I’ve never been sick a day in my life. While not exactly true, it’s close. I don’t get the flu, maybe one cold a year, and have never missed a day at work. The only time I spent the night in a hospital (prior to the stroke) was fifty years ago for a minor surgery. Then on June 23, 2021, I went out to my car to take something back to the store and it felt as though someone threw a switch and changed my life forever. I soon found myself in an ambulance (my first ambulance ride, in fact) headed for the hospital. I was sure that I would end up being embarrassed for creating such an unnecessary commotion. I thought all I had was a case of vertigo. Fortunately, I was not the one responsible for my diagnosis.

Suddenly, I’m in a small room with ten other people working on me and I don’t want to interrupt them because what they’re doing seems kind of important. Mentally, I’m doing fine. I know what’s going on. But every time they ask me if I know why I’m there, I respond, “I’m supposedly having a stroke.” Eventually I dropped the “supposedly.” I had gone from someone who took care of things to someone who needed to be cared for. To this day, I still find it hard to ask for help from friends and family.

From my perspective, a stroke is a funny thing. It’s like someone throwing a light switch. You don’t think about it and you don’t plan for it. It’s something you never think about until it happens, and then it’s all you think about. I didn’t feel any pain, never lost consciousness, and never realized just how serious things were getting. It was only when I started vomiting (which I never do) and everyone became much more intense that I realized how bad this could be. I later learned just how close I came to dying and how much Lana was managing. 

The second I had my stroke, it instantly changed me into someone I didn’t recognize. I  had spent my entire life working to provide a future for my family, making plans, traveling, and interacting with the world around me. There was always something that defined me and gave me a sense of person and pride. Be that physical, mental, or spiritual, there was always that one thing that gave me individuality, my mind. But all that changed with the stroke. I hate to use cliches’, but a “New Normal” arrived and I had to get used to it.

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 her for all that they have 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.

 A few tips:

Be patient with us.

Be Kind

Be supportive.

Be positive.

Please keep us safe.

Laugh with us and keep loving us.

I can remember twenty years ago, but not last year. I guess as my brain is healing, it must prioritize data. All my life, I have had wonderful memories. Sometimes, to my detriment, I would remember things from as far back as grade school. I cannot fully express the frustration of not being able to trust something you have always relied on. So, when I vent my anger and frustration, know that it is not you I’m angry with and that I am sorry.

To read the full chapter written by Rick - order your copy of Stroke and the Spouse.

Stroke and the Spouse Mission

To impact, guide and improve the lives of Care Partners and Caregivers through education, support and resources

Stages of Caregiving: What to expect. (Copy)

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.

What are the stages of the caregivers journey?

Confusion:

Confusion is the initial phase for the caregiver.  I was confused and unclear of the extent of the stroke and what the potential outcome could be. Each day is a rollercoaster of emotions, anger, fear, exhaustion. I was overwhelmed but wanting answers. Most of the answers were of the “wait and see” variety from the health professionals and the “God only gives you what you can handle” or “I know someone who had a terrible stroke and is better than before” variety from well-meaning friends and family. But often, all you hear is “Blah, Blah, Blah.”

As a nurse, I really didn’t expect to be confused. I knew the aspects of the medical issues related to a stroke, but not the response I would have as a spouse. My mind raced with all my nursing knowledge, nursing friends shared advice and the dreaded internet of information. As a take-charge type, I became frustrated because all I could do was sit back and watch our life fall apart. 

Fear and Anger

Fear and anger was the stage when I understood what had happened, but I now begin to worry and think “How can I handle this?” During this phase, the caregiver handles every aspect of their loved one’s life, making all the decisions alone. All the “what ifs” will rear their ugly heads. What if he dies? What if he survives? And how can I ever live without this person?

Once I passed through the confusion phase and had some idea what I was dealing with, my nursing background and the world of “what ifs’” entered the picture. I still didn’t know where we would be in a year poststroke, but I knew enough that it would not be a straightforward journey for either of us.nd what could be improved upon.

Loneliness and Depression

I had always thought of loneliness as a sadness due to lack of friends or company. So, how could I experience loneliness when surrounded by family, friends, and healthcare providers for many weeks and now home with Rick daily.  I learned being lonely, while never alone, is a unique type of loneliness. The entire world is flying past you with the typical day-to-day issues you thought were so important until life priorities changed. No longer did I care if he remembered a task that I had asked him to do a million times, or that he was not as attentive as other spouses seemed to be. He was my world, and I was losing him. 

            When  asked how I was doing, I was at a loss for words. I felt I had no right to complain or feel sorry for myself. He had the stroke, and I was healthy. The answer would always be: “I’m good, just a little tired. I just need to count my blessings.”  With this response, I thought that I was protecting myself from dealing with my feelings, but I was pushing others away and closing doors of support.  Everyone deals with this stage differently, but I think the loneliness while never alone is universal when a caregiver.

Realization

More and more days were hopeful for me and less were filled with depression and loneliness, this is when I finally came to terms with the life we will now have. The stroke was devastating for both of us and after a year, Rick’s recovery had plateaued.  Over a period of about three months, we both became aware that his physical and cognitive limitations were not improving and that we were beginning to adapt our lives around those.  The realization of what our future would hold happened for me at the one year follow-up medical appointment.

When the doctor shared, “He is progressing slowly, but he is moving in the right direction. I can see so much improvement from last year.” The confirmation from a medical professional that we were no longer taking steps backward provided comfort to us.  We understood that improvements could happen beyond this point, but the likelihood that they would was low.  The effects of the stroke and the changes in his overall health still needed to be addressed, but I no longer felt hopeless. I started to believe that we could work through any upcoming challenges.

For more information on the caregiver stages and tips for how to handle. Please purchase “Stroke and the Spouse” as well as provide your email and receive the weekly newsletter.

Stroke and the Spouse Mission

To lovingly guide and improve the lives of Care Partners and Caregivers through education, support and resources

Care Partner Dilemma - The medical answer to most questions - wait and see!

Care Partners and Caregivers, for months, I would ask every heath professional that cared for Rick, “What can I expect?” “What will he recover?” “Will he be the same as before the stroke” The answer 100% of the time was…

“You just have to wait and see what returns. The brain is a funny organ, everyone responds differently.”

This was very difficult to hear. What I wanted was “ He will be ready for discharge in a day - good as new” Unrealistic but what I wanted. The brain recovers much differently then say a broken bone. Although there are general recovery expectations based on location and severity, it ultimately is different for every stroke survivor. So how do you survive reading those dreaded words - WAIT AND SEE ?

Educate yourself on what is the normal expectation and then discuss with your health care provider how this relates to your loved one. I found an excellent article “Stroke Recovery Timeline” by Preeti Raghavan, M.D. from John Hopkins University.

She wrote…

A stroke is an emergency situation, and the faster you receive treatment the better. But what happens in the days, weeks and months after a stroke? Johns Hopkins stroke rehabilitation specialist Preeti Raghavan, M.D., explains that “at times, the process can be slow and uncertain, and different people recover in a range of ways.”

Although recovery looks different for everyone, it can be helpful to get a sense of the stroke recovery timeline so you know what to expect after you or a loved one experiences a stroke.

To read the full article:

https://www.hopkinsmedicine.org/health/conditions-and-diseases/stroke/stroke-recovery-timeline

You are not alone - together we can find the answers you need. Please check out my services pages, I think you will find additional support one on one.

Stroke and the Spouse Mission

To lovingly guide and improve the lives of Care Partners and Caregivers through education, support and resources

Care Partner Rest - Time away from your loved one.

Care Partners and Caregivers, we are in the final months of Summer and the last opportunity to vacation. For a Care Partner, an extended break from caring for your loved one. Having time away is not only helpful for you but for your loved one as well.

We all agree, but how do you make this happen? It isn’t easy and takes planning but here are some tips that could help.

1. Plan ahead. Let your loved one, family and friends know that you need time away so that you can continue to provide ongoing care. Send out an email with needed dates and ask for help. Recommend: Start your email with “ All of you frequently ask, what can I do to help? Well, I sure could use your help so that I can have a break.”

2. Respite Care. Provides short term relief for primary caregiver. This can be for various amounts of times Hours to days. A great website to learn more about Respite Care, cost and providers is www.NIA.NIH.gov (Search respite Care)

3. Leave the guilt at home, not on your break, You are only able to provide the best care when you are refreshed, both emotionally and physically.

What helped…

The first time that I took time away, I admit, I was a nervous wreck. Would he have another stroke, would he be okay, and what do others think about me leaving him. Was I being selfish to want time away? All of these thoughts flooded my head.

What helped? - Getting out of my own head. I was also a person experiencing a crisis in life and need my time. Just as Rick would rest his brain and body, I needed to do that as well. Exhaustion can play tricks on your mind, body and spirit.

• Identification that you have caregiver/care partner stress. Here are some signs to watch for…

  • Feeling burdened or worrying all the time

  • Feeling tired often

  • Sleeping too much or not enough

  • Gaining or losing weight

  • Becoming easily irked or angry

  • Losing interest in activities you use to enjoy

  • Feeling sad

• The site “Companions for Seniors” shared 5 ways for family caregivers/care partners to rest and refresh.

  • Rest - getting a healthy amount of sleep (generally 7-9 hours per night)

  • Go out into nature - My happy place is the local Botanical Garden. A walk thru the park fills your senses with great sights, smells, and a sense of comfort

  • Take time for your own health - Many SS tend to sleep more than normal (naps in the afternoon) make that your time. Do something healthy for you - walk, make a great meal, or just relax.

  • Exercise - This tip makes all the difference but it is very hard to put into your regular day. I found that when I had a minute alone, exercise was the last thing on my mind. This is a real mind over matter tip - make exercise a priority, if only 15 minutes, start the habit and you will be amazed at how much better you feel.

  • Pick up a new hobby - Taking the focus off your everyday life makes the day so much better. I love to garden and spending an hour pulling weeds, a mindless activity, takes me to a peaceful place-

Enjoy your time away - You deserve it!

Emotional Grief and Exhaustion

As I sit at my desk writing this blog, my heart is heavy. My spouse, physically is doing pretty well but emotional he is no longer present. Like you, I am grateful for so much but it doesn’t stop the pain of losing someone you love while they are still alive and needing you. 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.

As a care partner, what can you do? Even though you feel like you are ready to throw in the towel, you don’t and you can’t . That person that you loved pre stroke is still there, different but still loved and wants to show you love.

What helped…

Emotional and behavioral changes are a common effect of stroke. The medical term for lack of emotion is APATHY. Giving this effect a name doesn’t make it easier to deal with but at least you can understand what you are up against. Apathy is a decrease in goal directed activity, in caretaker terms - they no longer participate or care about everyday life. 1 in 3 stroke survivors are impacted by apathy. After some research and personal trials, the below list can help…

• Per the American Stroke Association, Some survivors just don’t seem to care about anything. The best response to apathy is activity. Give your loved one a choice of what to do for the day. (Staying in bed usually shouldn’t be an option.)

  • This is very true and helpful. If allowed, Rick would stay home and read all day. What is starting to help me is…

    • Weekly list of items that I need him to complete

    • Not asking what he wants to do but rather offering choices of what I would like to do. For example: Today, would you like to see a movie or visit a friend? This allows some sense of choice but also allows you to participate in life.

    • Set a weekly activity that he likes - for my husband playing golf. Again, he will not initiate a game but if asked he will agree.

• Letting go of the past as well as expectations for the future. I wanted him to participate and be back to normal more than he did. If he doesn’t want to participate, I won’t. We have always been “Rick and Lana” and now it is “Lana” Start to build a life for yourself.

  • I struggle with this daily. I enjoy doing things together but am realizing that he no longer processes our time together as before. Does he enjoy spending time together? Yes, but it is no longer central to his well being.

    • Work with the therapist to help you to work thru the loss of your relationship grief. Each one of us is different and what works for one may not for another. They are professionals and have so many tools to assist you.

    • Find activities that you can do without your loved one. Rick no longer enjoys eating out due to taste issues, I have a couple of dinner clubs with friends. I love to work in the yard and landscape, he likes the yard to look good but derives no pleasure in the process, I took a landscaping class and joined the local Botanical Garden.

    • Remember that before the stroke, you were not always the happy couple doing things together and you had different interest. YOU do not need to feel guilty living life when they would prefer to stay home. Many of friends, experience the same issues and their loved one has not had a stroke.