It’s a hard job being a caregiver for an adult child. Sometimes it’s harder than when she was a little girl.
My daughter suffers from “Sickle Cell Disease” and had a severe stroke when she was only 20. Before that she was a college student and very independent. Her stroke made her almost helpless. Thankfully she survived and grows stronger everyday.
I had to take charge of her care at home. I learned her medicine schedules, side effects, when to re-order her meds and pick them up. I cook her meals at her scheduled times and what doesn’t interfere with her meds. I also cook what she likes and I have to refuse some sweets and snacks that are bad for her.
I have to follow her doctor’s orders, keep her appointments, and schedule around my own doctor requirements.
She receives some outside help with a caregiver aid however I am still her main caregiver and support. I bathe her and take care of her personal needs and put her to bed.
My social life is almost non-existent but I try to get some much needed time for myself.
My charity program is a time away and I attend my support groups when I can.
My own health is not good but I push forward for the needs of my daughter.
That is what it means to be a Mother. I always answer to “Mommee, Mommee”.
I was diagnosed in October 2009. I was given my test results in Jan. 2010, my CD4 was 12 and my viral load was over 157,000. I was started on Isentress twice a day plus Truvada once a day. Three months later my viral load was undetectable (under 75) and my CD4 was 57. I have posted my continuing growing results on LTAI’s Blog before. Now on Jan. 9, 2017 my CD4 is 445, my CD8 is 473, and my helper cells are at 28% (CD4-CD8 Ratio). My health continues at a pretty good condition for an old gal of 65 years young. My health issues, which I had before HIV, have not
worsened, such as my IBS, acid reflux, etc. I have some heart issues (at 11-12 years old and had rheumatic fever) and suffered a mild silent heart attack 18 months to 2 years ago. I suffer some mild-hard chest pain and have been on continued long- acting nitro med (Isosorbide). I take blood pressure medicine and anxiety meds and both are said to be related to my HIV and other meds. However at 65, in today’s world, I think I would be on both even without HIV. It’s always important to see our doctor, take our meds and try to stay positive and active when we can.
I attend my “Let’s Talk About It” support group monthly and attend other advocacy meetings whenever I can. I talk with my support and advocate friends often, and I send Pen Pal letters to 5 other women living with HIV who I help to advocate for. I
also have a special email pen pal in Croatia, who is also living with HIV, that I email and have for almost 7 years. I feel this support and advocacy helps not only me but the other women as well. I am a member of a newly formed Leadership group for women of our communities. We have to remember that if we don’t advocate and fight for ourselves, we may get lost in the shuffle. Today’s political world is crazy and we must not be forgotten or pushed aside. We can’t allow someone else to make choices for us, without us!
Remember the words of Elizabeth Taylor: “I Will Not Be Silenced. I Will Not Give Up. I Will Not Be Ignored!”
In the United States, more than 1 in 5 new HIV diagnoses were in young people aged 13-24 years.
Only 10% of sexually experienced U.S. high school students have ever been tested for HIV.
Condom use has decreased among teens, with more than 40% of sexually active high school students not using a condom the last time they had sex.
National Youth HIV & AIDS Awareness Day is recognized on April 10th every year to inform the public about the effect that HIV and AIDS have on the young population. Additionally, this day features the work that young individuals across the United States have created in response to this noteworthy public health issue
What can you do?
Get educated. Learn the basic facts about HIV transmission, testing, and prevention.
Get tested for HIV. CDC recommends that everyone between the ages of 13 and 64 years get tested for HIV at least once as part of routine health care. Contact your health care provider about testing.
How can we be supportive/inspirational to other family and friends when we feel so…. lost ourselves?
I have never been a what I call the “in your face type” with “things are wonderful and just smile”. I am a realist and like to face obstacles head on with truth. I can be supportive when someone is down and needs immediate support but I wonder later was that the right approach.
I am not a “Debbie Downer” but I believe in telling the truth when someone needs it. Some of the fake support others dish out doesn’t faze me nor does it help in the long run.
Facts, not fairy tales, I guess is what I believe is best. I know, I know “some” can’t handle the facts but I feel they need truth and facts head on to ditch the fairy tales.
How does everyone feel about that or how do you give support for the doom presently approaching us?
For those living with HIV it’s important to keep up with what’s going on and sometimes we need reminders to help us. When we’re first diagnosed we are given so much information, it can be overwhelming.
A little refresher now and then can be very good. I know, I have forgotten and need occasional reminders. Here are a few very good videos to refresh our minds and maybe teach us something new. To view the videos, just click on the links below.
We all feel at times that we are defeated by our past mistakes or past experiences, but we have to believe that we are overcomers! And, no matter what happens and comes our way we will defeat it.
These are some things that help me to overcome my inner enemy. Changing my mind to what can go right instead of wrong
If I am thinking that am going to fail at something, I tell myself I will pass.
Expecting the best will happen when my family and I get together.
He or she will accept me, as I am, when I tell them my diagnosis, and if not, it is not the end of the world, there is more life to live. They’re missing out, not me, I understand that rejection is God’s protection.
My self-esteem is high because I honor who I am.
I am grateful for my healthy body. I love life.
As I forgive myself, it becomes easier to forgive others. – Louise Hay
I am beautiful.
I will succeed
Using humor and fun around someone that makes me happy.
Going out to eat.
Remind myself that the negative thought that I’m thinking is only negative; it has no power other than what I give it. When I give it power, it controls my destiny.
Watch your thoughts, they become words.
Watch your words, they become actions.
Watch your actions, they become habits.
Watch your habits, they become your character.
Watch your character, it becomes your destiny. -Lao Tzu
I surround myself with positive people, who are headed in the same direction as me, or who are already there. Don’t be afraid to jump into something new, live outside your comfort zone. Enjoy life!