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,

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,

Soup Recipe for Spiritual Health

I’ve been making soups all winter and now I continue as Spring has sprung because I found it makes me feel good – really good in fact – and happy. Is this why my mother likes to cook so much? Maybe, although she never told me these additional benefits beyond the wonderful taste of her creations and sharing your favorite foods with loved ones.

So now I find myself cooking soups not only for their consumption but for my spiritual health. For me, spiritual health is body, mind, spirit and social wellness that I try to practice daily.  And interestingly enough – making soup balances these spiritual health practices in a meditative way.

I enjoy the physical aspects of soup-making such as the grocery shopping the healthy aspects of consuming a good vegetarian meal that warms up my body and the aroma in my home makes me smile. My mind enjoys developing my shopping list. I take in the grocery store and instead of rushing through I take notice of my fellow shoppers, grocery staff and the wonderful shapes and colors of the vegetables.

The cleaning, chopping and simmering of the soups trains my mind be in the “now.” I recently added music in the background as I cook and put on classical music and it really added to all my senses in the kitchen (and I’m not a big classical music fan!) and makes my spirit happy. Sharing my soup creation with my husband and friends rounds out the spiritual health balance.

For those that say they don’t like to cook, believe me, this recipe below is pretty easy…so no pressure! Try this out if you are feeling out-of-sorts, lonely, overwhelmed, in a standstill on decisions, stressed, bored, etc.

Below is my favorite go-to soup. Easy to make, healthy and satisfying. I happen to concentrate on vegetarian soups since I’m trying to slowly go 100% vegetarian (not there yet but almost – more on that in another blog).

I make my soups salt-free and have been experimenting with various spices (turmeric, curries, and some old standbys). This vegetarian soup with green lentils recipe listed below cooks in about 1 1/2 hours (90 mins). Try my recipe below and send me your thoughts. Oh – and send in your favorite soup recipes and how they make you feel in the comments section!

Vegetarian Spiritual Health Soup Recipe:

Planning: Spend some quiet time deciding what kind of soup you want to make, develop your own soup or grab an interesting recipe. Oh, don’t forget your reading glasses when you go to the store (that’s really a reminder for me!).
Shopping:  Take your time driving to the store. Really take in that this is part of the creative process. Have your shopping list in hand and take your time finding your vegetables. Enjoy the colors and say hello or smile to your fellow grocery shoppers and shopping staff (hey, the staff should be our friends!), if you want to throw in a different vegetable not on your list then do it.  Continue on to your beans, spices, etc. Read the ingredients. Try to buy organic if you can afford it – but it’s understandable if you can’t afford it financially. Enjoy the process. Take your time.
Kitchen Prep:  Find your bowls, knives, pots, cutting board and spice ingredients. Lay them out in an orderly fashion. Don’t forget to grab some clean towels.
Music:  I’ve played all different types of music when I’ve cooked soup the past few months – lately classical music (Bach) really has been enjoyable – give it a try!
Ingredients (chop the veggies):
– 1 Onion (I like yellow)
– 1 Leek
– 6 Carrots (2 cups)
– 1 Bunch of Celery (about 6 stalks)
– Broccoli (1 or 2 cup)
– Cauliflower  (1 or 2 cups)
– 3 small Yellow Potatoes
– 1 Turnip (optional)
– 2 small yellow or green squashes
– 1 cup of green beans
– 1 small bag of frozen Peas (optional)
– 1 cup of Green Lentils or Quinoa
Spices: Experiment with spices that you like – I add a 2 tablespoons each of: Turmeric, Yellow Curry, Mrs. Dash
Cooking Instructions:  Add 7 pints of water to all of these chopped veggies, lentils and spices in a large pot (but use your judgement on the amount of water as you look in your pot if you need more water). Cook at a medium heat for 30min then simmer on low for an hour. I generally simmer on low for another 30min but have a taste and see what you like! Don’t forget to put your timer on. I don’t add additional soup stock since this recipe makes the stock!
Clean Up:  I practice the clean-as-you-go method. Be in the now as you clean and put away your cooking utensils. The soup should be simmering now and giving a lovely aroma.
Eat & Share:  Enjoy your soup over the next few days with a family member or share your soup creation if you live alone (or call a friend to discuss making your soup or throw a soup party).

Wishing you Light on your Path,

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,

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,

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