Getting Caregiver Support When You Have No Time

103 Comments

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 many support groups dedicated to their needs. 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.

Carol Bradley Bursack

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Over the span of two decades, author, columnist, consultant and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Her experiences inspired her to pen, "Minding Our Elders: Caregivers Share Their Personal Stories," a portable support group book for caregivers.

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103 Comments

You are so correct. I work full time, come home and take over father's care. Although oldest sis stays here, she does not do much. I do the pamper changing, etc... I'm currently starting therapy. The therapist asked me who is my support system. I said, "AC" She asked, "AC?" I replied, "online group - AgingCare." She nods. Then asks, "Who is your support?" I replied "AC." It was getting frustrating because no matter how many times she asked that question, I kept saying "AC." Finally I told her about my 7 siblings and the years of asking for hep. I told my siblings I was researching how to commit suicide - No reaction. In the end, when I finally decided the day, where and how - which was less than a week, I came on AC and asked for help. I got it. Since then, this site and the caring caregivers have been helping a lot...even on my therapy exercises since I seem to have problems Doing it. So, yes, I am willing to stay awake until 1:00am in order to get feedback, encouragement and to help others just as I have been helped.

Thank you, AgingCare. Sincerely, Book
I am 38, I have a husband, 2 sons (15 & 20) and am my fathers only biological "child". He is 82, almost 83, and I am his primary caregiver. When my husband and I married we sold his house and built next door to my dad because I've always been his caregiver, even when he was healthy, even when I was 10. My parents have been divorced forever and I also am my 76yo mothers caregiver, although thankfully she and my dad must have mde some sort of unspoken pact to not be sick at the same time! Over the past 4 years she has really "cooperated" with that! My dad has a very rare form of cancer, liver failure brought on by both drinking and chemo. He's undergone 74 radiation treatments within a three year period, chemo, and a surgery lthat left him with a 4 inch by 4 inch hole in his groin which was an infection that took 7 months to heal. During this time, I have quit my job, stressed my husband to the core, my family has given up vacations (just can't afford them anymore), have repaired and repaired again our vehicles (can't afford a payment right now), given up eating out, our meat dinners have somehow be ome pasta because it's cheap (although I did switch to whole wheat), we've given up our normal sleep patterns to cater to my dads crazy sleep patterns, learned to to lift, bathe, transfer, been educated on cancer, wound care (had to pack a wound for 7 months when he wouldn't allow a home nurse in), we all know his medical history by heart. My sons began care taking alongside me of their own will, at first I objected but they persisted and I'm glad. And when I get exhausted (which is often) or when the hospital stays go on too long, or when I'm ill from no sleep, it's my boys that remind me that this is all temporary, and whether it's one year more or 5 years, we will have our lives back and things will once again be normal, just a bit lonelier. I don't allow my husband to help with my dad. Crazy I know, but I need at least one person to be normal. Besides, he goes to work everyday and makes it possible for me to do this all important unpaid job. He cooks, he cleans, he pulls more than his share. Many nights I lie in bed reading your posts, never responding, but always finding answers and gaining support from all these people that are just like me. I know the toll this will cost my family. My son is an engineering major and I know it will be difficult for him to leave one day. I know it's hard when my 15yo tells a friend he can't go out because we can't leave grandpa alone and mom can't drive him. I'm thankful for the administrators at school that understand what's happening at home and understand that sometimes we can't make the 17 mile drive into town and let him work from home via Internet. I hope that in the end we can look back on this journey and know that we did everything we could, and that our sacrifices helped ease him into his spot in heaven as comfortably as possible. We all made this choice, whether conscious or not, to be someone's "person". We've regretted it, we've embraced it, we've accepted it, we've cherished it. All of us are in this together, and when I feel alone or at my block wall, I turn to you all. Just when I feel sorry for myself because I haven't had a full day or night to myself, its you I turn to. The other day I came across a quote my son once wrote on a facebook post. This was before my dad got very ill, before this crazy, life changing journey began: "Grandparents are a little piece of heaven sent down to make our lives amazing." and now it's time for us to do the same for them.
I have a mother who is in her mid to late 70's who still works as a caregiver to artistic men and her 90 year old sister. She does get help from 2 of my cousins from time to time. I also am a care give to my wife and work full time. Plus have our son living with us a college student and our daughter is in college out of state and financing her college tution. The only time I have for myself is when I put my wife to bed around 9 PM. Then I get up between 1 and 3 AM to take her to the restroom and give her meds. Then I get her up between 5-6 AM so I can get her dress, feed here, take her to restroom before some help comes for me 5:30 PM - 9:00 Pm fixing her dinner, restroom and getting her for bed. My sister also is a caregive to her husband's Aunt. Plus she home schools her 4 children at home which help her out. The children are teenagers. We all need to motoviate each other.