How Family Caregivers Can Build Community & Practice Communion

If you have traveled the family caregiver path taking care of a loved one with Alzheimer’s and dementia you could find yourself isolated from your friends, family and community. It can happen subtly over time. Friends and family stop calling or inviting you to events – perhaps they feel uncomfortable. Or we stop going out to public places or accepting invitations because it’s getting harder to physically handle the work involved with getting our loved one in a safe external environment (restaurants, church, a mall, a store, a friend’s home, etc.).

As caregivers, we should understand the importance of finding or building our community not only for ourselves but for our loved one.  Finding and interacting with your community is truly practicing “communion” and is a healthy and vital part of our need for human connection and health. It’s important that we avoid isolation and keep a connection to our friends and family members. Isolation isn’t healthy for your loved one or you as the caregiver.

A definition of communion is: The sharing or exchanging of intimate thoughts and feelings, especially when the exchange is on a mental or spiritual level.

Our social well-being is just as important as our physical and emotional well-being. It’s a balance that can quickly become out-of-balance as we tend to our loved one with a myriad of caregiving activities and rightful worries of safety in social-settings if we try to take our loved one out of our homes and into our community.

When raising a child we often hear the phrase “It takes a village.” And it certainly does. But it also takes a village when you are caregiving to someone that is in a health crisis or has a terminal or chronic illness. You can’t go it alone – nor should you try. There are resources in your community – although they may be hard to find – they are out there (contact your local or regional Alzheimer’s Association to start). And also, one can begin the development of your own “care circle” which are friends and resources that can help you with caregiving and/or respite care for yourself.

Communion involves Alzheimer’s and dementia social integration in our day-to-day reality of caregiving whether it’s getting our loved one out in public places for field trips, at social gatherings or just having visits to their home (or care facility). During these visits encourage friends and family to share food, photos, music, stories, laughter, etc. Reach out to your friends and family members and teach them how to interact with your loved one. Some may take you up on the call and some may not. Be understanding and ready for either response.

There is no need to hide, be embarrassed or be isolated in Alzheimer’s and dementia caregiving. Our loved ones are part of our society and should be socialized and sharing communion with our friends, family, and community as we all do – even in their vulnerable state. We are all in this together. As your friends and family cared for your loved one in health so should they in illness.

Community integration can be challenging if your loved one’s dementia has progressed to a point that you cannot take them out of the home – but then consider inviting friends and family into your home (or care facility) for a visit or meal. Ease the way for your friends and family members – prepare them ahead of time of your interest in keeping your loved one interacting with them, talk to them about what to expect and express that just being in the same room is a form of sharing, giving and exchanging friendship and communion with your loved one. If they ask about if your loved one will even know they visited – reply that they will on some level and most importantly you and your visitor will know.

Make the call and try – for your health and the health of your loved one.

Inspirational Quote for Contemplation:

“When we are in communion with another, we become open and vulnerable to them. We reveal our needs and our weaknesses to each other… sharing weaknesses and needs calls us together into ‘oneness’.”
-Jean Vanier, Catholic Philosopher, and Founder of L’Arche an international federation of communities for people with development disabilities

Spiritual Introspective Questions for Caregivers

  1. Read the inspirational quote for contemplation which is listed above. What comes to your mind when you read the quote again after time for quiet reflection?
  2. How do you or could you share “communion” with your loved one?
  3. Are there family members or communities that you could gently bring into your loved one’s life to share meals, activities, field trips and celebrations with?
  4. Have you thanked other caregivers that help with your loved one’s care? How could you reflect your appreciation to them?

Step Seven – Daily Practice Steps for Caregivers:

  1. Practice integrating your loved one in family, friend, and community activities in a safe manner for your loved one and yourself each week.

Wishing you Light on your Caregiver Path,
Meg

How Family Caregivers Can Practice Forgiveness

Family caregivers who are taking care of loved ones with Alzheimer’s and dementia (and really all family caregivers) can benefit from understanding how to practice what I call “Spiritual Release” which is the process of forgiveness and letting go of societal or self-inflicted expectations, pressures or pain.

Forgiveness and Self-Care

Being able to de-stress is one of benefits that spiritual release activities offer in self-care for caregivers. The emotional stress of watching your loved one become vulnerable and deteriorate every few weeks before your eyes while you coordinate their daily care, medical care and your household is overwhelming. A family caregiver can lose their temper and feel anger and  toward themselves, their loved ones, family members, friends and their medical team and community (due to lack of assistance). Your caregiving duties can last from 3 to 7 years and the strain on your body, mind and spirit can be damaging, You need relief.  It would be worthy to learn about practicing forgiveness in a daily practice to help in your resilience as a caregiver.

Practicing forgiveness everyday is a necessary part of self-care that a family caregiver can learn. Cycles of anger and guilt can limit our effectiveness of caregivers and hinder our own health as well as the health of our loved one. We have all heard that forgiveness is a gift that we give ourselves. If you cannot give this to yourself you need to reflect on why that is – and correct it the best way you can (see below for introspective questions to help explore this).

The Act of Letting Go of Expectations

The act of letting go can mean understanding that you can only control yourself and your actions or behaviors. Our loved ones with Alzheimer’s and dementia are in such vulnerable states that we can’t control what they do or say. We must forgive and understand the process they are undergoing. Don’t take what they do or say personally. They are doing the best they can in their circumstances – at their current state of consciousness – just like you are doing the best you can at your state of consciousness or self-awareness.

If it helps – think of it this way when you feel triggered into anger or disappointment – your loved one is doing exactly what they are supposed to be doing in their state. In fact, everyone on your caregiving team, family, friends are only doing the best they can at their own state of consciousness. Remember this in the midst of one of your anger/expectations/guilt triggers and take a moment when these feelings arise so you can reflect and reduce your frustration immediately or soon after.

Having behavior expectations of everyone (friends, family, your care team as well) can be exhausting if you feel constantly disappointed by them. Once you understand that they can only behave at the state of their own consciousness – then really we can shift beyond forgiveness (since how can you blame someone that cannot behave beyond their consciousness) and understand we can’t control their behavior. The cycle of disappointment and anger can then stop. That may be a hard concept to grasp since we want certain quality standards of care for our loved ones (let’s say from their doctors and care staff) so we can be clear, as caregivers on what are care expectations are, but beyond stating that and making wise care choices and understanding where our friends/family are in their own state of consciousness (what they are able to do), other’s behaviors we can’t ultimately control – only our own.

See below for spiritual release daily practice steps.

“Whatever is not yours, let go of it. Your letting go of it will be for your long-term happiness and benefit.”
–The Buddha

Three Introspective Questions For A Family Caregiver:

  1. Can you forgive yourself and others in your life for any perceived failures or transgressions? If not, why and what you are gaining from not forgiving them or yourself?
  2. How could you practice spiritual release this week by unburdening yourself of societal or self-inflicted expectations, guilt, and stresses?
  3. Do you believe that your Higher Power loves you unconditionally?

Two Daily Practice Steps:

  1. Every day practice forgiveness to yourself and others. Take ten minutes each evening to reflect and forgive yourself for any mistakes you made in caregiving or having unkind thoughts or words you expressed to your loved one or anyone throughout the day. Think about how you could have handled things alternatively. Review if you need more self-care time or you need a new or different strategy to cope or act differently. Let go of anger, expectations and bad conversations you have for others like balloons you are releasing in the sky. Say I forgive you out loud or in your mind to them. Let the balloons float away. Close your eyes, quiet your mind and feel love the love in your heart. Feel receiving love from your Higher Power and send waves of love to your family members, friends or care team by visualizing (or feeling) sending love waves to them for five minutes or longer. Know you are loved and all is forgiven. Let go and know everyone is just trying to do the best they can including yourself. Believe you can do better tomorrow now that you know how to reflect on your anger/guilt/expectations triggers as they arise in the moment.
  2. Every day practice self-care in some manner. Examples: Reach out to someone to assist in watching your loved one and take respite time to walk, have a massage, have tea with a friend, go to the library, meditate, read, go to a support group, time to shop, go to a party or concert, be in nature, garden, phone a supportive family member or friend, sleep, hair salon visit, exercise, visit your place of worship, watch your favorite film, dance, listen to music, sit in silence, practice yoga, walk by a school yard filled with children (their laughter is invigorating), etc.

Share with me your comments and insights below.

Practicing spiritual release and forgiveness is Spiritual Step 6 of 7 for caregivers which will be reviewed in my upcoming book 7 Spiritual Steps for Caregivers™: A Path to Meaning and Hope in Alzheimer’s & Dementia Caregiving.

Wishing you Light on your Caregiver Path,
Meg

Find the Interconnectivity in Your Caregiving

Many of us caregivers struggle alone – until we realize we need to recruit and form a team to help us take care of our loved one. Our team may include our family, friends, neighbors, physicians, social workers, community health workers, and support groups (whether they are spiritual, religious or disease-specific). We are as connected to these team members as we are to our loved one we are serving.

But if we devote time to contemplate our journey in spiritual reflection – a caregiver may find that their “team” is larger than what they originally thought.

In fact, one may find that we are connected to not just people we have physical contact with but all on earth (people, nature, animals) and our Higher Power. This is the concept of “interconnectivity” and “oneness” that many different faiths and spiritual leaders teach.

But why should a caregiver even understand interconnectivity and oneness with all on earth? Many might say they can barely keep their head above water on a daily basis with all the care coordination and stress one has as a caregiver.

Well, I assure you that understanding interconnectivity and oneness with all – will help you with your caregiver duties since this is where you will find hope in your caregiving journey. Not hope that your loved one may be immediately cured of their ailments – but hope in knowing you and your loved one have not been abandoned.

As caregivers, we are having a deep and shared experience with our loved one. We have to go very deep within to connect with them as their disease progresses – beyond our normal communication patterns. We open our hearts, look in their eyes, we touch their hands and hold them – as we do a newborn. We feel their connection to us.

We can also feel and know this on a larger scale with all on earth. We can find the hope that we are not alone in our journey or in our world and that are loved one will be eventually returning, lovingly, to their Higher Power.

To find this oneness is to find, ultimately, love. It is a universal love that is there waiting for us to find it. The illusion is that we are separate – and separated from our Higher Power and each other but we are not. On a spiritual level we are one. We are all one – connected through universal consciousness.

And in that, caregiver, you will find that you and your loved one are not alone.

Suffering and pain may be eased but it may not be completely eliminated for some as they learn about oneness. But to understand we are connected and on spiritual journeys with a sole (or soul) reason to experience life on earth and connect back to our Higher Power can strengthen your spiritual foundation as a caregiver.

Whew! Was that too much? Well…it may click and it may take time. Many people write and speak of oneness and interconnectivity. You can find different ways that explain the same concept. But a mental construct or explanation is not be enough for most to feel oneness. To find oneness a person can utilize a simple practice of meditation or practicing presence (being in the “now” as Eckhart Tolle teaches).

Next week I will share a Caregiver Meditation with you on my blog. Please reflect on the quote below and questions that follow.

Inspirational Quote for Contemplation:
“We are here to awaken from our illusion of separateness.”
– Thích Nhat Hanh

Below are a few spiritual introspective questions for you to take time to reflect upon. Journal your answers and please share if you wish.

  • What is your concept of spiritual “oneness” and “interconnectivity” with your loved ones, others in your community, everyone on earth, and with your Higher Power?
  • How has caregiving affected how you connect with family members, friends and strangers that you meet?

Finding the interconnectivity in your caregiving is Spiritual Step 5 of 7 for caregivers which will be reviewed in my upcoming book 7 Spiritual Steps for Caregivers™: A Path to Meaning and Hope in Alzheimer’s & Dementia Caregiving.

Wishing you Light on your Caregiver Path,
Meg

Caregivers Open Yourself to Vulnerability

As caregivers to the vulnerable with Alzheimer’s and dementia, we witness their weakened physical, mental and social condition. We are typically the family guardian of our loved one in this health crisis and put on a suit of armor to battle the disease, the complex health care system and the frustration and exhaustion that can accompany the many tasks and pressures we undertake.

Many times we feel we must be the pillar of strength to be the family caregiver and although there is much endurance needed to provide care to your loved one and courage watching our loved one’s decline during this journey – let us take time to connect to their vulnerabilities and our own vulnerabilities.

Why should we take time to do this?

Because to understand the meaning of this caregiver journey, our loved one’s journey with this disease, and our “shared” journey, we should come from a place of common humanity. Common humanity can be achieved by connecting through an open heart and learning from each other – and we need to recognize our vulnerabilities to be openhearted.

As we open up to being self-aware of our vulnerabilities then we learn much about our own capacity for love, compassion and kindness. We become “more human” and can reflect on the concept that there is meaning in the journey that our loved one is going through and our own caregiver journey. The hardship, tears and exhaustion does have meaning – and that meaning is that you are becoming more human (or can) through spiritual growth and deeper connection on a heart-level with your loved one during this time.

A caregiver’s vulnerabilities can be many – fear that they themselves may be diagnosed with the disease in the future, discomfort at their loved one’s decreasing mental and physical capacity, pain with the loss of their best friend and partner, social embarrassment, fear of death, fear of letting go, etc. But out of a shared weakness, between us the caregiver and our loved one, we can help each other on this journey.

As Brené Brown, renowned researcher on vulnerability teaches us, do not numb vulnerability with blame, perfectionism, alcohol/food or other numbing behaviors – embrace it.

Being vulnerable and open is the path to connection and connection is why were are here.

Vulnerabilities draw us closer – and you can be a strong caregiver who demonstrates compassion, courage and kindness while being open to your vulnerabilities. We don’t have all the answers, we are learning as we travel on the caregiver path, there are days we are all overwhelmed and what we see can be scary. Don’t numb those vulnerabilities but recognize them and what you are learning from your loved one as they demonstrate extreme vulnerability.

Spiritual Introspective Questions on Vulnerability:
1. What is the spiritual meaning that you are deriving from your own caregiving to your loved one?
2. How have you become more human caregiving to your loved one?
3. Do you believe there is meaning to the experience your loved one is going through? If so, what do you believe it is?
4. When caregiving duties are overwhelming, what makes you persevere?

Recognizing your own vulnerabilities is Spiritual Step 4 of 7 for caregivers which will be reviewed in my upcoming book 7 Spiritual Steps for Caregivers™: A Path to Meaning and Hope in Alzheimer’s & Dementia Caregiving.

Wishing you Light on your Caregiver Path,
Meg

Develop A Caregiver Code of Values

As family caregivers we make decisions every day and every week on care coordination, medical and therapy needs, financial decisions, meal and social activities, and more.

We are constantly assessing and trying to determine the right course of action for our loved one under enormous stress. As caregivers, we are mostly learning as we go on this path and we should reflect on how we are making our decisions – and how our behavior is toward our loved one. What is guiding us in our decision making and our behavior?

Hopefully, it’s our defined values with consideration of our loved one’s values.

When we were children our parents and society helped formed our decision making through teaching us values. Now that we are adults we probably generally know our values but let us re-confirm and write them down to validate what are our values today – and review what we believe our loved one’s values are (if they are unable to articulate them).

Knowing our caregiver code of values can give us strength and assurance when the easy and tougher caregiver decisions are needed to be made. Knowing one’s value is a compass that can guide us on our caregiver path.

We should review our values and challenge ourselves on if we are truly living and making caregiver decisions based off our chosen values and/or our loved one’s.

Sometimes there can be a paralysis in caregiving decision-making either from overload (crisis) or trying to reconcile our own or a family member’s values that may be different from our loved one’s values. Recognize that there may be tension in the family due to having different values.

Of course, values can change as we continue to have experiences (or they can stay the same). Growth and change is different for everyone. But values should be reviewed frequently (every six months is good or when you feel the need).

Developing your Caregiver Code of Values

I recommend that you take time this week (30min to an hour if you can find it) for this exercise.

  1. Review the attachment (below) that has a list of values (add your own if you don’t see ones that resonate with you).
  2. Choose 3 to 7 values that are important to you and your caregiver role.
  3. Reflect on why you believe the values you chose are important to you.
  4. Do you have examples on how the values you chose are guiding your caregiver duties, decisions and your caregiver experience?
  5. If the loved one you are caring for can’t articulate their values – do you believe you know what they are? How are you honoring their values as you care for them?
  6. Try to prioritize your values if you can.
  7. Write up your list and put them in multiple places to remind you (your bedroom, in your wallet, on the fridge, etc.).
  8. Every week review your actions and decisions and see it they matched your values. If so, great. If not, either you need to adjust your decision making or behavior (or your values list may need to be adjusted).

Let me know what you come up with and share it when you’re finished!

Link to values attachment: Caregiver Code of Values List Meg Foster

Developing a caregiver code of values is Spiritual Step 3 of 7 for caregivers which will be reviewed in my upcoming book  7 Spiritual Steps for Caregivers™: A Path to Meaning and Hope in Alzheimer’s & Dementia Caregiving.

Wishing you Light on your Caregiver Path,
Meg

Building A Caregiver Spiritual Foundation

A family caregiver taking care of a loved one with Alzheimer’s or other dementia-related disease experiences an extraordinary amount of stress and physical exhaustion. But there is another experience that a caregiver may go through and that is the development of major life questions that are brought to the surface in their mind: Why did my loved one get dementia? Why did God do this to my loved one? What is the meaning of this (or any) senseless disease?

We, as caregivers, struggle with understanding what is happening, on a bigger level than just the physical, as our loved one slips away slowly each day.

A way that we can walk the caregiver path with more clear purpose and less agonizing is to build our spiritual foundation. Why should we build our spiritual foundation?

Because having a defined spiritual foundation will be our rock – our strength that will assist us as we continue on our caregiver journey. If we have a belief system then we can give pause and understand this experience that we, our loved one and our family members are going through. But first we must start with the spiritual foundation building blocks.

This is a time for deep self-reflection. Time may be at a minimum for caregivers, but one should find minutes here and there and reflect on spiritual questions. A few are below, such as:

  • Explain your view of the existence of a Higher Power (insert your name for God, Light, or Source, etc.)?

  • Why are we here on earth?

  • What do you believe happens after physical death?

Write down your answers. Review them every week and revise them when you have new insights. There is meaning in you being a caregiver and you are not separated from your Higher Power (and either is your loved one). Go deep. Build your spiritual foundation. You will benefit from this time of spiritual reflection as will your loved one from your renewed strength. There are more spiritual foundation questions but start with these and build from there. We will discuss your answers and insights next week.

“A house must be built on solid foundations if it is to last. The same principle applies to man, otherwise he too will sink back into the soft ground and become swallowed up by the world of illusion.”
-Shirdi Sai Baba, Indian Spiritual Master

Wishing you Light on your Caregiver Path,
Meg

Knowing Your Family Caregiver Role

When we’re first called to be a family caregiver to a loved one with Alzheimer’s or a dementia-related disease – no one gives you a job description, an operating manual or training. We learn “on the job” and we learn from advice from our friends, family, from good books on the topic, or we scour the internet for any and all kind of caregiver or disease information.

I believe whenever we’re placed in a new role, such as a caregiver, it’s best to understand our obligations and responsibilities so that we can focus on what’s important. Also we can go back to that defined role as we get overwhelmed by numerous duties that we have to perform. But many times at the beginning of becoming a family caregiver it’s “all hands on deck” and you could be up to your eyeballs in crisis mode and handling the day-to-day caregiving with no time to reflect, think or feel about what what is happening beyond the immediate needs of your loved one. And that’s fair and normal.

A caregiver will take on many duties over the course of Alzheimer’s and dementia diseases. The caregiver can become the patient advocate, the care coordinator, the protector, the personal aide, the driver, financial lead, insurance auditor, community contact, family communicator and counselor to name just a few.

But at some point, I ask caregivers to take a few minutes to reflect spiritually on the caregiver path they have been been placed on (no matter if they started recently or years ago being a caregiver). You may feel the need to understand what this caregiver experience means and how you could improve upon how you’re handling all the pressures and feelings of loss.

One of the first spiritual steps a family caregiver can take is to ask themselves “What is my role as a caregiver?” And the answer should be beyond just the physical caregiving we do in the reality of our day-to-day responsibilities. This question is on a “spiritual health” level which includes not only physical well-being but spiritual, mental, and social well-being. When the caregiver understands their role then they can use that information as part of their spiritual foundation for decision making, emotional strength and finding meaning in this journey.

I believed my role as my husband’s caregiver was to help him transition from his physical reality to reuniting with his Higher Power with love, dignity, and respect. I was able to articulate that to friends and family when they asked how I was doing and how I was able to handle all the overwhelming duties. It helped center me and made me focus on what was really important. Until we find a cure for Alzheimer’s and dementia we have come to terms with our loved one’s death at the end of their journey with these diseases.

I encourage family caregivers to find 10 to 30 minutes time (and more if you can find it) for reflection on this question and to develop your own personal answer.

What do you believe is your role is as a family caregiver?

Wishing you Light on your Caregiver Path,
Meg

Your Caregiver Path is Sacred

When I was caregiving to my husband, Dean, who had dementia, I went through many emotions that all caregivers may feel at one time or another…feeling overwhelmed and a bit lost in all the care that needed to be provided or coordinated. Caregiving can be exhausting, especially if one adds on other duties such as a job or raising children. If you are a Alzheimer’s or dementia family caregiver, you have been put on a path – the caregiver path. And all the steps on your path creates your caregiver experience or journey.

Caregivers undergo a tremendous amount of stress and need to pay attention to what I call their “Spiritual Health” which is physical, mental, spiritual and social well-being. Caregivers are so busy caring that they many times neglect themselves. Caregivers need to become aware that this caregiver path and what their role is on this path. That is the first step.

If one’s gain their own spiritual understanding of the caregiver path, it can give the caregiver fortitude and purpose for this arduous journey and it will open their heart.

Why is it important to understand the caregiver path is sacred? It’s important because if the path is revered, it can be accepted and honored within one’s soul. If you revere something, then you respect it and have great patience for it, and you can even be in awe of it. These understanding can then illuminate the caregiver’s path when it becomes overwhelmingly dark.

One may need also need a definition for “sacred.” Sacred can mean connected to God (or your name for Source, Higher Power, Spirit, etc.) or it can mean devoted exclusively to one service, a repeated ritual, or something deserving great respect. The selfless service that is involved with caregiving for a loved one in such an extreme case of vulnerability can be deemed sacred if one accepts these definitions or if you formulate your own related sacred definition.

The caregiver has been called on a path that has possibilities of developing, changing, or challenging their spiritual beliefs, values, and attitude. This is also what makes it a spiritual path. Through caregiving and opening one’s heart in a deeper manner toward your loved one, you, the caregiver, have an opportunity for spiritual transformation.

Wishing you Light on your Path,
Meg

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