Sharing…

I just wanted to share a picture of a drawing that Nicole did for a 12 year old girl who also has PH and has spent her entire summer in the hospital. The picture is of SpongeBob who is a Nickelodeon character. Hugs:o) Jane

Mumsy

My beautiful Mumsy went home to be with the Lord, and my Daddy, today around noon. Thank you, all, for all the love and support you’ve shown Mom and I. I’ll write more later, but right now, I think I may sleep for a week straight. I wanted to let you know, though.  

What We Worry about Rarely Happens

Back when I was just getting to know Lisa, I learned a lot about the hardships that face the disabled, especially during childhood. The more we talked, the more often she told me about experiences she had that would have scarred me for life or killed me outright if they’d happened to me instead of her. There are “dirty little secrets” about the way people treat disabled children that would turn your hair...

Doubt…

Yesterday I took another exam in my quest to obtain a pharmacy technician degree. I love the study units and am learning so much (probably too much). Yesterday, during the exam I was having a very hard time. The exams are open book but I always try to answer the question first before I look it up to see if I’m right or just to find the answers. For the first time since I started school I had doubt in my...

Very Soon…

Yesterday afternoon about 2:00, Mom’s breathing changed drastically. The nurse was there within half an hour, and said that Mom was in her last hour or two. Mom is still here, but we are very close. She seems comfortable. The evening was filled with lots of family (all four kids and most of the grandchildren, even the oldest great-grandchild), our pastor and his wife, and a harpist. I slept (?) holding her...

Ebb and Flow: Or Life Is a “Slide Rule”

Sorry for the long absence.  Since Paul started radiation last week things have been so much more fragile, frightening and lonely for me. He started radiation last Thursday, and we were then in mid-preparation overload for my son’s 30th birthday gathering.  That went well, but was terribly stressful – since my son grew up with both his biological father and his “successor”, both of my...

Friday Fun: Give Us the Guffaws

It’s Friday, so let’s share some funnies. What’s a humorous experience that’s happened to you in your caregiving role? It could be something that happened years ago or just yesterday, as long as today it makes you giggle. We’ll giggle with you. Please share in our comments section. And, I choose a random winner to receive an autographed copy of my book, “Good Morning! Sunny Reflections to Start Your...

Seizures – How to Help

In my last post, I gave a brief overview of epilepsy (what it is and isn’t, how people get epilepsy and the types of seizures a person may have). Today is all about what you can do to help if you see someone having a seizure. I forget that seizures can be scary (probably because I’ve witnessed more seizures than I can count and am so used to them) but do realize they can be frightening for someone who has never...

Webinar Follow-Up: What’s Your New Answer?

In yesterday’s webinar, I shared a three-step process you can use to develop answers to those awful questions family members and friends may ask. Questions like, “Why don’t you put your caree in a nursing home?” and “Are you sure something’s wrong” and “Why don’t you get help?” If you missed yesterday’s webinar, you can listen to the recording here....

I’m Sorry…

I’m sorry for the post that I made yesterday. It was hard yesterday morning especially to find positivity. I hate going down the “why/what if” road. I did get confirmation that the EKG that Nicole had done at 7-years old where the technician said that he saw a problem was definitely abnormal but the hospital nor the doctor felt the need to tell us this. I already believed this but it’s nice...

Update on Mom

Mom was supposed to have an angiogram on Monday to determine the severity of the “heart attack” she had and to see what the next step would be.  If the angiogram showed blockage, the doctors were going to put stents in to make sure the blood flowed properly and to prevent a bigger one. Now keep in mind when Mom went to the emergency room they said she had “pneumonia” and then ruled that...

New App Offers Ratings for Providers, Drug Info

The Sunlight Foundation today debuts a new mobile app for consumers called “Sunlight Health”. Sunlight Health helps medical patients and their families make informed decisions about healthcare services and prescription drug options. Using data from government and nonprofit institutions, the app covers three categories: healthcare facilities, medical suppliers and prescription drugs. From their iPhone or Android...

Waiting for Freedom

Mom is very close to the end. She quit eating and drinking a few days ago, which means no more antibiotics. Our focus has shifted to keeping her comfortable and surrounded by love. We are waiting. And waiting. And waiting. Now that we have no chance of recovery for her, I want it to be over. She hasn’t spoken for over a week now, and is not responding to things around her any more. I want her to have freedom...

Epilepsy: What is it and Can I Catch It? (No, You Can’t)

I really enjoyed Jane’s posts about Nicole’s conditions and thought I’d do something similar about epilepsy.  Plus, since Robert is doing his own educating about epilepsy, I was inspired to do a little educating about it too. First, the facts: What is it? Epilepsy is a medical condition that produces seizures (it’s also sometimes called a “seizure disorder”). Seizures are caused by an...

I Don’t Understand…

I don’t understand… why Nicole was born with a heart defect but my bigger question is why God didn’t reveal it until she was so sick. I don’t understand… why in 2009 I was asked to switch my position on the homeschool board to secretary which I didn’t believe was as important. I felt betrayed with the way this was done. I look back and see now that it was in preparation for my...

Wondering

Every time I stop blogging or reading the other blogs, I start feeling lost again. Caregiving.com has become a home that I could escape everyday to and no one in my family had access to it. It is my way of venting and knowing that I no matter what I am going through that day—resentment, anger, happiness, sadness—the person on the other side of the screen could understand me and give me words of...

Not Liking, And Maybe A Little Scared Of, Caregiving Today

My mother has been confused since Thursday of last week. I’ve continued to think that “tomorrow” will be better, but the confusion is here to stay…for a while anyway. I’m very confused about vascular dementia. I had one doctor tell me that unless she has another stroke, and that if her blood pressure is maintained, the dementia will not progress. I had another doctor tell me that he...

Talking About Your Caregiving Depression

This morning on Your Caregiving Journey, Ann Stookey joined me to continue our conversation about the depression you may feel during your caregiving experience. You can listen to our show via the player at the bottom of the post. When you experience depression, you may think you can hide how you feel. When you share so much space and time with someone, like your caree, your depression will be hard to hide. So, how...

When Was Your Last Day Off?

In the summer, we all think of vacation, a break, a day off. I wonder, though: How often can you take a day off? Please vote in our poll, below, and share any additional thoughts in our comments section. Take Our Poll Resources We’re taking submissions for our Caregiving Art Show and our Help book! Be sure to share your art and your story with the world. Our 2011 Family Caregiver Survey report offers a snapshot...

Noise

I have neighbors who live above me who make an incredible amount of noise. They make so much noise that all I hear is noise. What’s the noise you hear in your life? Your noise may be what you hear between your ears (“This is too hard”) or what others put between your ears (“You look like this is too much for you”). It’s that kind of noise that seems to demand constant quieting....

School of You: Summer School, Session III

Our third session of our Caregiving Summer School starts August 13! Join me for three-week classes that help you manage your caregiving experience. Our school is about you and your caregiving experience, to help feel better where you are right now. Our classes conveniently take place over the phone (“teleclasses”). Teleclasses are a great way to learn, share and support—without leaving your house....

And Who Says Men Don’t Ask for Directions?

24 hrs after Hubby made his I love you statement, he once again reverted to being in the V.A. Home and me as his caregiver. The statement/question he made this time was “You have a contract to do this (take care of him) don’t you?” I answered him without skipping a beat. “I sure do. It’s called a marriage license.” The look on Hubby’s face when I said it was priceless. A...