Answers to Your Questions about Dementia Care

Yesterday on Your Caregiving Journey, we began our new monthly series on dementia care. Claire Day, Vice President of Constituent Services for the Alzheimer’s Association Delaware Valley Chapter, joined us to explain what Alzheimer’s is, its warning signs and to answer two questions from a listener. You can listen to our show via the player at the bottom of the post. (Note: Claire will join us on the...

I Need to Refocus and Change my Attitude…

This is continuation of the blog I wrote earlier today. I was so mad, upset, frustrated, etc. It’s not much better now. Rick did call COBRA and found out that it isn’t a mistake and unless we pay the full amount then we will lose our insurance as of Sept. 1st. Given Nicole’s medical issues this isn’t an option so we had to make a decision tonight that we will pay the insurance and not our...

Tell Us: When Does Caregiving Steal Your Spirit?

Over the weekend, one of our Facebook fans shared what’s on her heart: “Does anyone feel like there spirit has been broken being a caregiver?,” she wrote. “I am doing what I need to do but I feel like my spirit is broken.” Caregiving can get the best of you in a day, when a phone call brings more bad news or a dementia behavior demands one more ounce of patience than you have. But,...

Winning the Battle Even if I’m Losing the War

Poor Hubby has certainly has his ups and downs with Lewy Body Dementia. It’s heart wrenching to see him slowly, and at times quickly, slip away from what and who he knows. My goal for Hubby has always been, Quality of life and maintain his dignity. I have not always succeeded at it but I do my best, learn from my mistakes, pray I don’t repeat them and lean on the Lord for guidance. Yesterday’s...

I Don’t Whether to Cry, Scream or Punch Something/Someone…

Today has not started off well. I had planned to take my exam on Label Preparations for school yesterday afternoon during my normal study time but my ex-sister-in-law came by unannounced very upset… this is a blog in itself which I was going to write about but now I have to vent. I had been putting off defrosting my freezer but I had to get it done today as Hurricane Irene looms. I decided to take my exam as...

Angry, But Not What You Think

A call to the Dr this morning leaves me with an anxious heart. Dr tells me that he and staff believe Hubby is in the beginning of end stages of his Lewy Body Dementia and recommended placement. I was a little taken back by that. In my mind Hubby needs to be bed bound in the end stages. Unable to communicate and needs fed. In my eyes, this is what end stage looks like. But I suppose end stages start...

A Twitter Party to Launch Our Summer Break

It’s summer, which means it’s time for We Break for Summer! We’ll celebrate summer while encouraging you to take a break (even a short five-minute one) daily to do something just for you or about you. Our special week begins August 28 and ends September 3. We’re kicking off our week-long event with a Caregiving Party on Twitter on Sunday, August 28. Our party begins at 8 p.m. ET (7 p.m. CT, 5...

I’m Enough, So I’ve Had Enough (of the Doritos)

This morning on Your Caregiving Journey, Anna Stookey joined me for a discussion called, “Ditching the Doritos.” We talked about how to stop eating your way through a tough time. You can listen to our show via the player below. We started our conversation with the recognition that eating can be the way we take a break. We’re tired of caregiving. We’re exhausted from phone calls. We’re...

Emotional Land Mines

Not sure what happened or how it did. Hubby asked for a bowl of cereal before I went outside to jog/walk. A ritual I have been trying to keep up for myself in an effort to do something positive for me. I happily obliged him and even added a fresh sliced peach for his enjoyment. Comfortable that he would be settled in for my 20 min workout in the driveway I went outside. When I returned to the house feeling...

The Other Side

While visiting with my parents today a staff member let me know that another resident had just died that morning.  I could instantly tell it was hitting all of the staff hard.  They were doing their best to go about their duties and keep things as normal as possible for the balance of the residents but they were hurting.  It made me think of all of the people who assist us Caregivers:  hospice workers, aides,...

Hope

We are, or may be becoming, the representation of Hope. Let me explain. While we were on vacation, I received a phone message from the local university whose Institute for Memory Impairment and Neurological Disorders we first visited to get a second opinion about Steve’s Mild Cognitive Impairment in 2010. We now visit them annually so Steve can be reassessed.  The person was asking if we would be interested in...

Talking with G-J

This morning on Your Caregiving Journey, G-J joined me for Table Talk. You can listen to our show via the player at the bottom of the post. We touched on a variety of topics, including two fun events coming up next week on the website (look for more details on Monday), her vacation to Alaska (a life-long dream come true) and the wish to find others in a similar situation (caring for a spouse while raising...

The Dream

I can’t keep my hands off of Mom and Dad. Seems like every visit I put my hands (or a chin… don’t ask) on their heads. Yesterday I tugged at Pop’s chin and told him it was about time for a shave. Mom is from the generation when women wore hats in public so every visit I play with whatever she happens to have on her head at the time. We also play footsie, rub knees, tug at each others arms...

Can’t Get Better

I really need to bounce back and get my energy back, and my body needs to stop betraying me, I don’t have time to be ill and not have my organs functioning properly. I am so exhausted and feel like I have no energy. Got out of the hospital Aug 5th. Doc  wasted my time and didn’t do any tests to see what the bleeding was coming from. My pcp’s colleague on Friday Aug 12th  said I still have...

Fundraiser

I am starting a fundraiser which I hope to do through November. I am selling buttons for $2.00 each with all the proceeds (minus the cost of buttons/shipping) to go to PHA (Pulmonary Hypertension Association) in honor of Nicole and all the lives that have been lost and those who struggle with this disease and for a cure. I have three different designs. If you would like to purchase buttons please email me...

Struggles with Priorities…

I feel like I’m drowning again in all the things that I need/want to do… I don’t feel like the hamster but like I’m in quicksand and can’t get out. In the three-word journaling class we talked about to-do lists and I feel I have to many things on my to-do list and I have to keep pushing things back and then everything piles up like the waves at the beach. I really feel that I need just...

Update on Today’s Test…

Today was Nicole’s lactose tolerance test. We left at 6:35 a.m. and arrived at the office at 7:20 a.m. We probably would have gotten there ten minutes sooner but went about 2 -3 miles past our turn as the directions from mapquest I had gave road names when there were no street signs… ugh… We sat in the office from 7:30 a.m. to 12:15 p.m. Nicole could not eat or drink anything after 8:00 p.m....

Letting Go

Many MANY years ago, when the only thing I could do in the kitchen was boil water, I had an experience that lasts me a lifetime. Once, while boiling said water I took a metal spoon and stirred macaroni in a metal pan. To keep the macaroni from sticking, I was sure to stir the bottom of the pan. As I reached over to turn the heat down on the electric stove, I made a full electrical connection and was paralyzed by...

Like Cramming for Final Exams . . .

Welcome back to the engaging world of Paul and Jennifer. In Tuesday’s episode, the happy couple visits the oncologist who does suggest chemo. He says that each of the possible drugs should be able to stave off death for 4-6 months; Paul chooses the least invasive type and the cancer center is checking availability of insurance coverage. Doc Onc also prescribes some Prednisone to pep things up a bit for...

I Surrender

Hubby has been convinced for quite some time now that he is being held in a V.A. Home and I am his caregiver (jailer). Whenever he makes a comment about where we are, who’s house this is, or a reference to “your house”  I have always corrected him in that the house belongs to us. In moments of frustrated proving, I’ve even pulled out paperwork to the fact but Hubby just says I have forged...

Holding A Stop Sign In Front Of Me, But Nothing’s Stopping

Today was a whirlwind kind of day, where the challenges kept coming at me and there was no stopping them. I had morning help, and help for early evening so I could take Marah on a little outing, but the four or five needed Depends changes all happened in between those two times.  Ahh…. Rees was very shaky at around 4:00. He was looking for where I was in the house and, when he found me, he started to...

A Letter…

Denise had made a comment on my Conflicted blog suggesting that I confront the doctors who I believe didn’t/missed Nicole’s congenital heart defect and/or pulmonary hypertension. This is to her first pediatrician. Nicole was five weeks premature so I didn’t have a doctor picked out and one of the nurses suggested him. I have left his name out. Here’s the letter: My name is Jane Northrop....