A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Saturday, March 30, 2013

Needs of Caregivers

A fellow Niemann Pick mom posted this on her facebook page:

Photo: This March we’re focusing our efforts not only on raising awareness of caregivers for special needs children, but also raising awareness of the special needs of caregivers. We know that it may be hard for family and friends to understand the enormous responsibility of caregiving– we want to help by offering you a “need” that you might have, curated, designed and ready to share on your Facebook page, Pinterest account, blog or through email. There’s no shame in having needs as a caregiver although we know how hard it can be to admit them. We hope the Caregiver’s Special Needs CareCards help you to start the conversation http://bit.ly/15nys9C


So, I followed the link.  It took me to The Caregiver's Survival Network.  From their webpage:
CGSN is the only free online community dedicated exclusively to the welfare of caregivers of any and all physical or mental debility, from Alzheimer’s to cancer to autism to bereavement.



I found their blog - the entry for March 1 starts with:
This March we’re focusing our efforts not only on raising awareness of caregivers for special needs children, but also raising awareness of the special needs of caregivers. We know that it may be hard for family and friends to understand the enormous responsibility of caregiving– we want to help by offering you a “need” that you might have, curated, designed and ready to share on your Facebook page, Pinterest account, blog or through email. There’s no shame in having needs as a caregiver although we know how hard it can be to admit them. We hope the Caregiver’s Special Needs CareCards help you to start the conversation.

Following this text they had lots of photos, like the one above - all asking for different things that caregiver's need.  Some are personal - I need to laugh, I need to vent.  Others are practical - I need groceries.  But they are all needs.  And I'm sure there are thousands more.

Many times caregivers forget themselves in taking care of others.  For whatever reason, caregivers feel guilty for doing things they used to enjoy, or taking time to themselves.  But without taking some time, caregivers run the risk of burn out and not being able to care for their loved ones.

As a friend, neighbor, colleague of a caregiver, please don't just ask what you can do to help.  The caregiver probably will say "I'll let you know!" and then never follow up.  Sometimes it is that it gets busy, other times they don't want to bother the "good samaritan".  But as that friend, neighbor, or colleague take the time to find out what the caregiver could really use - whether it is a pizza delivered to the house, or someone to vacuum the carpets while they are at a doctor appointment.  Then DO IT!  Tell the caregiver that you WILL be helping them - and tell them specificially what you will be doing.  Although the caregiver will probably protest (No, I really don't need the help.  Thanks, but we are ok.), make sure the caregiver is taken care of.

So I challenge everyone - do something for a caregiver, and let me know what it is.

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