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.