Yesterday, marked our three-anniversary post stroke. Each year, I look at the progress made and our ongoing challenges. I still hold out hope that we will be back to our pre-stroke life. Afterall, so many will share wonderful stories of those much worse that are doing better than before. Hmmmm! Not sure if I believe those anymore, I know they are shared to give us hope, but reality is so much different. At some point, we as caregivers need to accept the life change and the limitations of the Stroke Survivor.

This is much easier said than done – I know, I struggle daily with acceptance. For me, the moment of realization was at the yearly neurological exam. It went well but as I started to discuss the challenges, the doctor gently explained that the limitations and changes post stroke were now long term and that the focus should be not on improvement but rather management. Although this was hard to hear, it was exactly what I needed.

What is this new phase and how do we manage it? This week, I will explore this phase and share some information and tips on how to better manage your day to day. Please share in comments your experiences and what worked for you. We are all navigating this journey together.

After my husband’s stroke, all I heard was “You need to join a support group.” I agreed but had a very difficult time finding caregiver support versus a group for the stroke survivors. I looked high and low and still had problems finding support. This week’s blog will cover what a support group can provide, how to find one and a list of support groups that I have reviewed.

Would a support group help me?

Like you, I wondered what a support group could provide. My day was already so busy, how would I fit this in. When planning the day, the caregiver has limited “ME” time. As I researched and spoke at a few support groups, I quickly became convinced that this is time well spent. The good news is that the caregiver support group can meet at the same time as the Stroke survivor support group. You each have an hour with your peers.

There are days and situations a caregiver experiences that we can either cry or laugh. I have tears but I am working to find the humor in our everyday life. I think you all can relate, one evening I was sitting outside and had just had one of those days. My spouse came out to sit with me. I started to share how I was feeling, he listened intently, and due to his apathy post stroke, he shared “OK, I am cold I need to go in now” At that moment, I had to chose to laugh or I would have cried all evening.

In several blogs, I have pulled information from the Mayo Clinic. I have found this site to be user-friendly, accurate, and helpful tips for caregivers. For more in- depth information, follow this link: therapeutic effects of laughter and stress - Search (bing.com)

Grief for me is an odd emotion.  I associate grief with a death of a loved one.  We all have experienced some form of this type of grief.  The shock of the death, the funeral arrangements and the time needed to heal form the pain of losing this individual.

When a loved one experiences a stroke, both the survivor and the Caregiver experience grief.  The survivor’s grief can be different than the caregivers, but both are real and painful.  This week, I will only be focusing on the caregiver side of grief. Frequently, the caregiver is told you are so strong, so you hide your grief.  Many times, when feeling depressed/sad, it is could very well be a symptom of the grief that you are experiencing.

When my doctor shared that I was experiencing grief, I was a little taken aback.  My husband survived his stroke, and I should be grateful not sad.  Yet, I was sad.  As I journaled that evening, I had to list what I was grieving.  Everyone’s list is different, but I am happy to share mine (hopefully that will help you)

I am awake at 3:30am unable to sleep, tossing and turning and thought this is a good blog topic because I am sure that I am not alone.  Part of poor sleep is being older, but the sleep issues started post stroke.  For so long, I was on high alert at night fearful that my loved one needed me and to keep him safe.  I hear every little noise and squeak and then need to investigate.  This sleep pattern brings back those days with a new infant.  What can the Care Partner/caregiver do?  How can I get a good night’s sleep?  Am I making it worse by taking a nap in the afternoon? 

Let me share my search for a good night’s sleep.

The stroke survivor and the caregiver need to deal with so many post stroke aspects that emotional changes may be lower on your priority list. The emotional issues can change your relationship with your loved one. After the first year, we are so happy they are alive and learning their limitations that the caregiver can overlook emotional changes. When discharged home, the health team will educate on depression but limited conversation on dealing with APATHY.

Why does my stroke survivor suffer from APATHY?

The summer heat can be an issue for the Stroke Survivor. The main concern is dehydration and how that can impact the brain but other organs as well. This week, we will explore dehydration. What causes and how to treat.

As a Care Partner/caregiver there will be times when you need a break from your loved one? For some a day away is sufficient but for others a week away is needed. This is when the Care Partner needs to determine options available for respite care.

Respite care provides the caregiver a chance to relax, regroup and replenish their energy. Respite can take various forms. It can mean a few short hours without caregiving responsibilities and worries, while a sibling steps in or an in-home caregiver takes over. Respite could involve dropping a parent or spouse off for adult day services. Respite might mean a long weekend away for caregivers during their loved one’s temporary stay at an assisted living facility.

What you need to know.

Respite care can be costly, so it is important to determine what services are needed and the most cost effective and safe way to provide those.

The types of Respite Care available.

The four most common are adult day care centers, in-home caregiving, assisted living stay and informal family respite care. Each has pluses and minuses and different costs associated with the care.

From that moment that you called 911, the world as you knew it no longer existed. Your role changed from partner, family member, child, or friend to caregiver. Soon, you realized that while taking care of your loved one you had neglected your own physical, emotional, and spiritual health. Being a caregiver is exhausting, and unless you are caring for yourself, caring for another is extremely difficult.

The caregiver is the neglected/forgotten stepchild in our society when a loved one suffers a health crisis, and he/she needs information, support, and resources to heal from the event so that a fulfilling, joyful new normal can be established.

How can you balance it all? The care of the loved one, your life both personally and professionally and not feel stressed, angry, or overwhelmed in this new role?

Upon reviewing literature and information provided on the internet, AARP had provided some very good information. Did you know?

The 2020 Caregiving in the US report from the National Alliance for Caregiving (NAC) and AARP found family caregiving rose from 18% to 21% from 2015 to 2020. Additionally, the average family caregiver provides about 23 hours of care per week.

Caregiving can seriously disrupt multiple areas of your life. And the impact can be particularly detrimental to employment if you are among the 60% of family caregivers working full-time. For example, AARP found:

• 53% of caregivers were late for work, left early, or took time off to provide care.

• 15% reduced their work hours.

• 14% took a leave of absence.

• 8% received reprimands for performance or attendance.

• 4% lost their workplace benefits.

Life has changed and it is overwhelming. What you previously knew or planned for your life has turned upside down. Friends and family are a great support but like you they are at a loss for what to say and how to best help you navigate this new role. As humans, we need to be able to balance our physical, spiritual, and mental health to not only cope with life but to have joy. No matter what phase your loved one’s care is at, it is never too late or early to search for help from a counselor.

As a care partner, I waited until I was very overwhelmed before I found support from a counselor. Please don’t follow my lead, reach out now. The counselor can provide a safe place to vent. They do not know your loved one and can have an unbiased voice regarding your feelings. Let me share the benefits of therapy that I received.

Able to share my thoughts and feelings without guilt that I was angry at my situation.

Received tools to be able to better handle my situation.

Understand that what I was experiencing was not unusual and that I was “normal” in how I was feeling.

Someone to just listen and not state how it could have been much worse or tell me that someone they knew had it much worse.

Feeling anxious, overwhelmed, exhausted, cranky, and finding yourself withdrawing from friends? You could be experiencing Caregiver Burnout. What exactly is “Caregiver Burnout” and how can you deal with or prevent it?

Caregiver burnout is a state of physical, emotional, and mental exhaustion. Burnout can happen at any time but typically it is caused by not getting additional help you and the loved one need, or if you are trying to do something more than able – physically or financially. Many caregivers feel guilty if they spend time on rather than on their ill or elderly loved ones.

I love this easy chart of the 3 stages of Caregiver Burnout. Quick and easy with excellent information.

Looking at 10 different bottles of medication with crazy sounding names, different dosages, and different times to be given is overwhelming and frankly, can cause anyone stress. How can you manage the medications that your loved one now needs? Be sure that they are taken safely? And know when to call if there is an issue? These are all very normal questions, and you are not alone in your concerns. This week, I will provide some easy medication management tips.