Don't go through this alone. Join a Community

Why should you join a community?  You are busy enough, as is!  This just sounds like one more thing to do!  We asked some questions for the last several weeks on our Help Me Help Momma Facebook page. One of the questions that we asked Family Caregivers was, “What is the hardest thing about caregiving?”

Doing It All By Myself

One of the hardest things mentioned most frequently was “doing everything by myself”.  Obviously, there are some physical tasks that are extremely hard to do by yourself. One common task is transferring an immobile Loved One from the bed to a wheelchair to a toilet. Of course, our Loved One must then be transferred back to the wheelchair, etc.  This task is especially hard when your Loved One has lost the physical ability to assist with the transfer.

The Emotional Parts of Caregiving

However, many of the answers we received had nothing to do with the physical hardest part of caregiving.  Rather, many of the responses described the emotional part of caregiving.  Some mentioned the emotions that they experienced when they finally realized that it was only because of their sole efforts that their Loved One wasn’t already in a Nursing Home.  If this describes you, see our recent blog post entitled The Lone Family Caregiver for some helpful tips.

The One Thing That Has Helped the Most

In that same Facebook poll mentioned above, we also asked another question. We asked, “What is one thing has helped you the most in your role as a Family Caregiver?”  One of the most common answers was Join a Community.  It’s interesting that participation in a Community does nothing to help with the physical challenges experienced by Family Caregivers on a daily basis. Yet Community involvement was cited as one of the most helpful things to Family Caregivers in their role as Caregiver to a Loved One.

Here are a few thoughts given by Family Caregivers regarding Physical Communities versus virtual communities. Also, what they felt were the most helpful things experienced in each community.

Join a Community (Physically)

There are many things that Family Caregivers said they liked the most about Physical Communities (often referred to as support groups). One primary reason is that they can attend along with other people that they know are “walking in their shoes”.  They can attend a local support group meeting. There, they get to  know that the other folks there are experiencing the same thing they are going through.  The tips given and feelings shared are not based on options. These tips are based on what these caregivers have personally experienced.  They can relate stories of what worked and what didn’t work.  They can laugh together, cry together, give hugs and personal words of encouragement.  All of these things are critical to bolster the emotional health of Family Caregivers.  Interaction with other Family Caregivers should be experienced as often as possible.

It would be great if Family Caregivers could have the “mountain top” experience every day. To feel like they do after walking out of a physical support group meeting.  There is no substitute to physically sharing experiences with others who are walking in your shoes.  However, Physical Communities often meet just once a month.  Even if the Physical Community met every every day, most Family Caregivers could not attend because they are busy providing care for their Loved One.

Being in Two Places at Once?

Many Family Caregivers say that would like to attend a Physical Community Meeting. However, they are unable because they have to be with their Loved One.  They realize they can’t be in two places at once!  It’s often a big deal to find a substitute caregiver to relieve you for a couple of hours so that you can attend a Physical Community meeting.  We have seen Family Caregivers go to all sorts of extremes to find a person to replace them for a couple of hours so they can attend.  We have even seen Family Caregivers bring their Loved One to the meeting with them.

Finding a two-hour substitute or bring your Loved One to the meeting may work well in your situation.  If so, you should do it.  But sometimes bringing your Loved One to the meeting or having a substitute caregiver in the home that is unknown to your declining Loved One may cause substantial emotional trauma for your Loved One.  This may be especially the case for Loved Ones’ with Alzheimer’s or a related dementia.  Sometimes the pleasure of getting out is simply not worth the pain.

Join a Community (Virtually)

For these reasons and others, Virtual Communities can help fill the void. Nowadays, we can participate in various online communities in the convenience of our own homes. Thanks, of course, to the modern marvels of the internet world. We can chat with other Family Caregivers at “virtually” any time of the day or night.

We have noticed something in our Help Me Help Momma Facebook group. There seems to be as much (or more) chatting going on at 2:00 a.m. as there is during the day.  This is often when the Family Caregiver is up and may be experiencing challenges with their Loved One. So, what do they do? Go to the Help Me Help Momma Facebook group and ask for help! There will almost always be some Family Caregiver respond to your question with words or encouragement or with their own tried and true tips or advice.

A disadvantage of a Virtual Community is that you can’t be there physically with the person that you are talking to. Thus you can’t receive a hug or a pat on the back (which is one of the most valuable advantages of a Physical Community).  However, a primary advantage of a Virtual Community is that it is always there 24 X 7.  There are almost always Caregivers there to virtually support you with their valuable words of wisdom.

Both Types of Communities are Important

The bottom line is, if you are a Family Caregiver, you should do everything possible to participate in a Physical Community AND a Virtual Community.  They both provide the following benefits that are often not available anywhere else:

    1. Companionship – In a Physical Community, it may just be once a month, but it is worth it.  Family Caregivers are always there in a Virtual Community – even at 2:00 am.
    2. Tips – Tried and true words of advice of what has worked and what has not worked for the person you are talking to.
    3. Wisdom you can trust – When you visit with another community member, it is more likely than not that you are talking to someone who knows from personal experience what you are going through.  You realize that you are talking to someone who is walking in your shoes.
    4. Accountability – It is great to talk to someone else who “will hold you accountable” for things that you have discussed that you know you need to do but are hard to do without support and encouragement.  

Download Our Free “Two Places at Once” Tip-Sheet

It’s clear that the benefits when you join a community are substantial.  However, as discussed above, the realities of life make it difficult, if not impossible to physically attend a monthly meeting.  For a few helpful tips as to how you can get the help you need to enable you to attend a physical group meeting, download our “Being in Two Places at Once Tip Sheet”.  We will share with you some to the ways that we have seen Family Caregivers manage to ensure the care of a Loved One at home AND be able to attend a physical support group meeting.

Being in Two Places at Once Tip Sheet

In the meantime, feel free to check our Virtual Support Group on our Help Me Help Momma Facebook page.  There you will find Family Caregivers who are providing care for their Love One, just like you.  It is our experience that these Family Caregivers love what they are doing with and for their Loved Ones and they will freely share their experience with you – even at 2:00 a.m.


About the Author

Doug & his wife Cindy have not only helped hundreds of families with their estate planning and elder law needs over the years, but have personal experience as caregivers and advocates for their Loved Ones as well.

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