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Caregivers Find Support When They Have Time - Which Isn't Often

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The wee hours. I started the habit of getting up at 4 a.m. during my most intensive caregiving days, as it’s the only way I could find peace and quiet. No demands. A time to connect with my soul and listen for universal guidance. It’s often all that’s kept me somewhat sane, though some may differ with me on the success of that last point.

Now, as moderator for the Agingcare forum, I see in black and white that I am not the only caregiver who operates in this fashion. I receive e-mail alerts when people post on the site and most come very late at night or very early in the morning (late night and early morning are subjective judgments and depend on individual mindsets, I have found).

These days, when I sign into my e-mail around 5 a.m., the notifications from Agingcare.com string out like a list of people hoping to win the lottery. I’m gratified when I see this list. Not only am I able to add my two cents of hard-won wisdom from my years in the trenches, but even more importantly, all of these wonderful caregivers are supporting each other. This group is exploding in numbers, and the people are amazing. I tell them this often, as I click on the responses to see if I should chime in or if they are taking care of each other so well they don’t need anything from me.

Back to the wee hours. I check my e-mail all day long, as most of my work is on my computer and e-mail is my most important tool, other than my writing software. During the day, there are a few posts, but not usually a lot of action. Why is this so? Well, who has time during the day?

Mom needs to go to the doctor or have her diaper changed. Dad has to be fed and kept from wandering out of the house. Siblings have to be begged to help and tough skin must be developed when the caregiver is told what they do doesn’t matter enough that they will receive help.

This is where support from those who understand comes in. This is why caregivers will give up an hour of precious sleep to find out they are not as isolated as they think. They will also give up precious sleep to help one another. They are not alone when they have this connection, and they want others to know that they, too, are not alone. These are generous people.

Even if it’s just online, caregivers find the support they need. They know they are doing their best and their best has to be good enough. They can drop the guilt. They need to get help and take care of themselves. They are okay as they are.

After they have unloaded and received some encouragement, they can then, if they are lucky, snatch a few hours of sleep before the demands once again begin.

Oops, Mom’s up already. So much for sleep. Well, at least I’m not alone.


For over 20 years author, columnist and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Because of this experience, Carol created a portable support group – the book “Minding Our Elders: Caregivers Share Their Personal Stories.” Her sites, www.mindingourelders.com and www.mindingoureldersblogs.com  include helpful links and agencies. Carol’s newspaper column, “Minding Our Elders,” runs weekly, she speaks at many caregiver workshops and conferences and has been interviewed by national radio, newspapers and magazines. She is the moderator of the AgingCare.com forum.

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Cat said
Mar 12, 2009

That is such a nice description Carol - you are absolutely right. Physically caring for your loved one, in my case a mother, leaves very little time for positive feedback and pats on the back. I know that in the past I have come to Aging Care to connect and find others who understand how difficult it is juggling it all because they actually do it.

In my personal life, I can agree with you that the real caregivers don't have much time to post - but rely on this board as a welcome respite and chance to connect at odd hours, or when they just need a break. Thank you for validating that this site values the people who are in the trenches of caregiving everyday.

NAUSEATED said
Mar 12, 2009

AMEN!!!!!!! Wonderfully written Carol! This site has been such a blessing for me everyday, and keeps me sane if only for a few minutes here and there. Thank You! Nauseated

PCVS said
Mar 13, 2009

Sometimes it helps just to start banging on the keyboard. I had a huge long post (relatively speaking) ready to go. Then I got anxious and deleted it. Still, just being able to take a few minutes and type knowing that I COULD hit submit if I really really needed to made it possible for me not to.

I think I am drowning, but my arms and legs are still moving so I might just get out of the frigib water and survive.

Patricia

mslisadoll said
Mar 16, 2009

Well, I can relate to what a lot of people are saying about having a lack of contact with the outside world or a personal life while acting as a primary caregiver. I haven't been able to keep many friends or have contact with many people because most people don't understand. I am also wondering if any of those local caregivers support groups would be helpful.

We have another trip to the doctor's office in a couple days and meanwhile I am being bounced back and forth between my mother and father as they both have health problems. My mother has some kind of rash that we can't get rid of and she scratches it until it bleeds all over the place and asks me for cigarettes every time my dad leaves the house.

I am trying to read or study on my medical transcription course to keep my mind occupied, but there's no outlet for stress here...

BEYOND said
Mar 16, 2009

Boy, can I relate to all of you, especially you, Carol.
I have had a few fairly good days and am I grateful. I am
Considering a trip to see my brother and am antsy about the drive in our little RV.
After all, I am 74.
But it is hard to take my husband because he is so helpless now. It's uncomfortable around other people because he has a runny nose all the time and he doesn't eat like everyone else. But he's the same sweet person he has always been so I just am grateful for that. I just pray that this ALZ doesn't make him mean.
I have a friend that has a really abusive husband and I see how hard that is to cope with.
I worry that a breakdown on the road will leave me helpless altho we do have road service. My husband always took care of the mechanical things. But I am learning.
He is diabetic and we have to be careful about his feet and lately he has been complaining. The doc says he has a bone spur and may need a corizone shot.
Meanwhile, I have an infected eye. What a relief to just tell someone.
Thanks, Ladies,
Beyond

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