Getting Caregiver Support When You Have No Time

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Getting Support Online<br>Night and Day

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.


Elder care author, columnist and speaker Carol Bradley Bursack is an AgingCare.com contributing editor and moderator of the AgingCare.com community forum. Read her full biography

 
 

Comments

 
  •  Comments 1 to 10 of 98 
 
 

Cat

Give a Hug

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

Give a Hug

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

Give a Hug

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

Give a Hug

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

Give a Hug

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

 
 

TIREDT

Give a Hug

Mar 16, 2009

This is such a great site that I found several months ago but have never sumitted a comment. I have read a lot but the few times I wanted to correspond something or someone interrupted. So let me just say before it happens again, that family always says "I understand", "I know how you feel" and the famous one "Remember to take care of yourself" My mom has already died ('07) and dad's alzheimers got worst so after he refused to leave the home he built, I decided to give up everything and move in with him. So 18 months later I decide to go to a free clinic and have discovered I have a lump in my breast and need to go to the hospital and to have a biopsy and do you know my youngest daughter says she will take me but refuses to care for dad, and has issues about who I get to take care of dad which is a boyfriend that she does not like. My sisters have other issues and with all the commotion I just want to cancel the whole thing. I am tired of trying to work it all out to please everyone else, and my oldest daughter has not offered any type of help! I have since gone off on everyone and I am going to do what I need to do for me, but why bother, when it is clear those words of advice and wisdom mean absolutely nothing!!!

 
 

NAUSEATED

Give a Hug

Mar 16, 2009

Dear TIREDT, don't say those words mean nothing, you are important! Who is going to take care of your Dad, if you don't? Get someone to take care of Dad while you take care of you. Prayers to you! Nauseated

 
 

TIREDT

Give a Hug

Mar 16, 2009

Hi Lisa and NAUSEATED, I was just checking back in and to let you guys know how much your comments meant to me and to thank you soooo much. You have already done more for me by just helping me feel not so alone. I pray and call on God so much for just some understanding why I feel so differently than most of the closest family members and friends are just plain lost forever. Thanks for your prayers! Please don't stop!

 
 

BEYOND

Give a Hug

Mar 16, 2009

It constantly amazes me that in most cases, the care of someone always falls on one person. How sad that families can't share the burdon and create somee peace and happiness for everyone. I llived so far away when my Mother suffered with ALZ and I simple couldn't be of that much help, and it fell on my sister for the majority of her care. How I regret now that I didn't make more of an effort to help out. I did take her with me when ever she would come but in her mind she thought she had been there for months and wanted to gohome. Her home was with my sister, and like all of us she would want to "go Home". But I still feel guilty that I couldn't help more, maybe I could've if I had tried harder.
Things do seem to go round when they went around.
Now I understand just how hard it was on my sis.
Please tho,TIREDt, take care of yourself because it looks like you are the only one who is willing to take care of Dad.
I'm searching too for someone to relieve me occasionally, and I will pray that you find someone too.
Take care,
Beyond

 
 

aletha

Give a Hug

Mar 24, 2009

Its been awhile since I have checked in. Like everyone else here I have been soooo busy. My biggest concern right now is SLEEP. I care for my husband who is bed bond due to liver failure and a broken hip> he has always been a night owl and is awake and needing something until 3 or 4 am. I also care for my step-dad who had a stroke that left him chair bond hHe has to be leaved to his chair , bed, potty etc. He is awake most mornings by 5 am . That leaves me with just a couple hours a night of sleep. I am so tired sometimes I fell sick. I guess I will make it through this tring time but sometimes I dont know how . I try to remember WithGod althings are possiable.. sorry so long I needed to vent.

 
  •  Comments 1 to 10 of 98 

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