(Editor’s Note: We welcome a new blogger tonight. Kristen and her husband have three children, two with special needs.)
Hello to all! It’s nice to be able to share my caregiving experience with others who understand or are looking for someone to understand what they are going through. Although I often feel so alone in my caregiving journey, I know I’m not. It’s hard to remember this every day. I found caregiving.com and found a place that I could talk with others about the good, the bad AND the ugly. So often, I find myself venting about a situation only to have to calm down and accept it, as is, often stepping back and excusing the situation, even if I don’t believe I should.
There are also days that I am so thankful for something someone did. I can tell them over and over how grateful I am but I just don’t think they really truly understand. Just holding the door open for me as I push my daughter in her wheelchair into the school is huge. Having a home to stay at on our numerous trips to the Hospital is amazing; lovingly and financially. I believe everyone is good and usually mean well but so many people really don’t know what it takes when you are caring for someone else, 24/7.
Thank you for giving me a space to share and also, welcome to others who are on their own caregiving journeys. Peace and Love, Kristen
You are a disruptor. The delivery of health care starts with you, continues because of you, and ends with you. Let's disrupt together to make the world better for family caregivers. 
Denise
Hi Kristen! I’m so glad you’ve joined us. I also agree with you about how well meaning others are but they just can’t comprehend what a caregiving day can be like.
Can you tell us about your children? We’d love to know more about them.
roaringmouse
Welcome!
I’m a fairly new person myself…but yes..here you can be “human” and everyone is accepting of you!
Taking care of someone (in your case 2) (mine 1 1/2 ?) 24/7 is tough…but it sounds like you are a pro. I understand the “door” issue. Back in Florida when my daughter was a baby..we had an iditorod. I’d push my husband in his wheelchair and at the same time he would push the stroller. Those days were gifts when people held the door or both doors open. So here at Caregiving…I’d say consider this place where the door is always opened for you.
The Roaring Mouse
G-J
Hi, Kristen! This is THE BEST support group I’ve found! I care for my husband who is 57 and has Mild Cognitive Impairment (MCI). I am 51 and we have a 15-year-old son.
I can also relate to how wonderful it is when someone opens the door for you. When I would go out with my Dad and he was using a walker, or not, I felt like the people who were kindest to us were the ones who has been in a caregiving situation before. I took my Dad to the DMV to get an ID card and in the line for the picture, everyone, and I mean about ten people, let him move to the front of the line. I almost cried.
Jane
Hi Kristen:
Welcome to the group. You will just love it here! I am a caregiver for my 17 year old daughter who was born with a congenital heart defect but it wasn’t diagnosed until two years ago. Because of this misdiagnosis it has led to a rare lung disease pulmonary arterial hypertension which is high blood pressure in the lungs (nothing like in the body) which causes the arteries in the lung to close. There is no cure at this time outside of a lung transplant.
I have the same feelings everyday at least of lately with her insurance issues, social security, and not being able to see the doctor’s I want her to see.
I look forward to reading more of your posts in the future.
Hugs:o)
Jane ~ mom to Nicole, 17 yo, VSD, PAH, Eisenmengers (dx 1/22/10)
BHJS (dx 2/4/11)
“You’re braver than you believe, and stronger than you seem, and smarter than you think.”
Kristen
Thank you for your comments. I already feel this was definitely a good thing to add to my never ending to do list. What I like about this is I am choosing do put this on my list. It feels good. I like this community already.
G-J
Oh, I also have the never ending to do list! I always feel my time here is well worth it!
ejourneys
Welcome, Kristen! I’m another newcomer. I’m 53 and care for my 54-year-old partner, whose most recent diagnosis in a series is MS manifesting as traumatic brain injury. The support here has already been tremendous for me, just seeing how we are all in this together and how we are not alone.
That comprehension is so important. I’ve vented on a semi-private blog and gotten a lot of support, though with comments like, “I don’t know how you do it.” Being here, with people who know and who do, helps keep me grounded and gives me courage.
Trish
Hi, Kristen! Caregiving.com is a supportive environment of really wonderful caregivers. We laugh, cry and help each other every day. I care for my disabled brother Robert. He has lived with intractable epilepsy his entire life and, over the last few years, has not been able to live independently. He lives in a care facility now through the week and stays with me on the weekends. I make sure he is well cared for. I understand how heartwarming it is when someone holds a door open for us. Robert pushes a walker and I tend to stay behind him in case of a seizure (he tends to fall backwards when his seizures hit and I want to be there to catch him if he does have one). It’s always a dilemma when coming to the door. I have to move in front of him and open the door while keeping my eye on him and preparing to sprint back to catch him. (He wears a helmet in case I miss).
Happy to have you here.
Kathy
Hi Kristen,
Welcome to the group.
If you can’t find support here, you aren’t visiting the site LOL!
Looking forward to learning more aout you and your family