Friday, January 31, 2014

A Dad's Fashion Sense Makes Cranial Bands a Cool Accessory.

(pictures from

Wesley Piercy wanted to take his son's current condition and turn it into a positive experience. Instead of worrying about the 'poor baby' looks, he wanted to embrace the situation. So he let the 'force', or R2D2, help. "So we decided to take the current situation we were in and embrace it as much as we could. I would rather have people asking us to take a picture and praising our situation as opposed to getting sympathy."

The bands are worn to protect flat spots on the head, plagiocephaly, encouraging it to fill out. "Experts say it’s a side effect of guidelines advising parents to put infants to sleep on their backs. The campaign, which began in the 1990s, reduced the rate of sudden infant death syndrome (SIDS), but also meant babies were often falling asleep with their head always turned to one side, said Dr. Joseph Losee, the division chief of pediatric plastic surgery at Children’s Hospital of Pittsburgh of UPMC. Since babies have soft skulls, the repeated pressure to the same area of the head often results in a flat spot. “That can not only cause some abnormal head shapes but it can even change your face, and those facial changes often don’t get better,” Dr. Losee said, adding the problem occurs more frequently in boys and on the right side of the head. “If it’s a really bad deformity, then we put them in a helmet.”"

As the Today Show posts states this has created a new arts and crafts business like "Bling Your Band" and "Wrap Buddies". Pininterest also shows designs. To read the entire post, go here.

Sunday, January 26, 2014

Take Care of Yourself: A testiment to being your own caregiver -- FIRST.

If there is any information I can pass on right now, it is that you need to take care of you first. My husband equates it to the instructions you get on an airplane -- if the oxygen mask comes down, put yours on first then your children. You are no good to your kids if you are sick or unconscious.
We are in the middle of a medical issue with me. It started back on 2012 but has reared its head recently again and now is the time to take care of it. When things started, I had the chance to have a procedure done but chose not to - doctors thought there was no immediate need, we had other things to attend to, the issue was not too bad. During this time, there have been some painful reminders of an ovarian cyst that might be growing but I explained it off as other things.
The other night we were at a fundraiser dinner. Shortly after eating, I found myself hunched over in pain, throwing up in the bushes in front of the building we were trying to leave (nice testiment to our dinner, it was very good - we hoped our hosts understood) and on my way to the ER. Long story short - it looks like the ovary twisted (nice painful feeling) and blood markers for the probability of cancer have risen. It should have been a quick and simple procedure the other day to remove it but because of the marker information that came in right before starting and my doctor could not find an oncologist who could come right away to assist, it was stopped and now we continue to forge on. My doctor decided to do an endometrial biopsy. There is an appointment with an oncologist set up and we are all hoping to get things taken care of soon, within the month I hope.
Looking back, I should have done things right away, we wouldn't need to worry about all this other stuff -- with low cancer markers, there would be no need for an oncologist. I can't work for awhile since I don't always feel well and cannot always drive because of the pain killers so I can't be on the road.
I try to look at the positive -- right now there is a 44% cancer chance which means there is a 66% chance of NO cancer - this is the number I focus on. Our oldest son is leaving in a couple of weeks for another state to work with Americorps. This is the time we need to make sure he is organized and has everything he needs to leave. Will still has not started his adult program so I really need to be home with him. So if there is any time that would be better to be ill and be home, it would be now. So I thank God for being around now and for the 'good fortune' and good timing of being around now to help. Once all is settled, I will be back to work when our boys should be in there programs. But for anyone out there -- take care of yourself first, even if it doesn't seem like it is serious enough. Just do it.

Thursday, January 16, 2014

Preparing for Tax Season

Now that the fun and happiness of the holidays are over, more and more advertisers are coming forward to remind us of our favorite Uncle Sam experience -- tax time!! Things change over the years and it is always good to take a look to see what has changed with the folks. I have some pointers from AARP (American Association of Retired Persons). I am not a tax or financial professional so please consult with one before making any decisions.

1. Claim a portion of long-term care insurance premiums. The older you are, the higher the amount you can claim. Here's the scale: Age 40 or under, the maximum claimable amount is $350; 41 to 50, $660; 51 to 60, $1,310; 61 to 70, $3,500; 71 or over, $4,370.

2. Deduct the room and board costs of an assisted living facility if the resident is there mainly for medical purposes and is getting staff assistance to perform normal activities of daily living, such as bathing and dressing, or has cognitive impairment that requires supervision. The services are deductible, too. They must be part of a plan of care prescribed by a licensed health care provider for a chronically ill person.

4. Do you work but pay a home health aide to take care of your spouse or dependent? You may be able to claim a credit of up to $1,050 on up to $3,000 in dependent (or spouse) care expenses. That credit is shaved directly off your bottom-line tax bill; it is not a deduction from your taxable income.

5. If you contributed after-tax income to your retirement account, a percentage of your annual distribution may be tax-free. The logic for this, says Steber, is that if you already paid taxes on money before you put it into the account, it shouldn't be taxed again when it comes out.

6. There are some tax issues for caregivers as well. See elderlcarelink and I also have a previous post on a page 'Caregivers Topics' that refers to this as well.

Read here for more.

Wednesday, January 15, 2014

Update: A Lesson Learned in Redeeming Will's Savings Bonds

A recent update: you will see below that I had to send the bonds to the Bureau of Public Debt after being certified by a bank officer. The paperwork was sent back to us (they are holding onto the bonds) because Frank had not signed the papers (he is co-guardian). I usually am the only one who has to sign if I am doing something. Even though the bonds did not have Frank's name on them as well, because he is co-guardian he had to have his name certified on the form as well. So make sure all guardians sign and certify the '1522' before mailing.

I found a few savings bonds for Will the other day and decided to cash them in since he is below the maximum money allowed in his account for his SSI payments (cashing them in would not bring him over the max either). So off I go to the bank with his guardianship papers and bonds.

There starts a new adventure. The bonds are made out to Will; the guardianship paper is made out to the 'estate' of William. Will is very much alive. So now there is a call to Treasury Direct to make sure the teller and I understand how to redeem them. It has to be done by mailing them in, unsigned, with a certified copy of the guardianship paper, a form #1522 which I filled out, and then it needs to be signed by a CERTIFYING OFFICER with MEDALLION STAMPS from a bank. After the Bureau of Public Debt receives them, it may take between 3 - 4 weeks for the money to be deposited in his account. They cannot be cashed. I did find out later that MAYBE if I needed them right away, if Will had gone to the bank with me and somehow answered the bank teller that it was OK to cash, he could have gotten the money immediately. These savings bonds can also be re-issued. "We must reissue a bond in these situations: to correct a major error, for a court-ordered change, when you change the beneficiary, when you change who owns or co-owns the bond."
Please check with Treasury Direct for information. If you are holding any savings bonds for your child and maybe looking at guardianship down the road, you may want to speak to someone at your bank or call Treasury Direct for advice.

Saturday, January 11, 2014

Terms to Know For Your Journey Through Special Education.

The National Dissemination Center for Children with Disabilities (NICHCY) has listed numerous 'key terms' that parents or guardians should be familiar with as they find their way through the educational system. You will hear and get to participate in these; sometimes they can be trying and tiresome but very necessary; working with people who have a great interest in your child it will seem easy. Make sure people listen to you; I have heard horror stories from some parents but have found when you deal with your child's teacher, speech and occupational therapists, physical therapists if needed, social worker, school nurse, etc, as long as everyone realizes that they are there for your child (not you or them) by keeping it on the child people are more open to listening. Some parents think they have to fight (loud and almost emotionally) to get what they want; parents have to realize they cannot always get what they want when they want it (you don't know the school system and what the parameters are). What I found best was to keep asking periodically, try to demonstrate why your child needs what they need - show them a new task they have learned or what they seem to keep falling back on. Remember YOU, the parent, have to be trying to teach as well - it isn't the teachers who have to teach; you need to reinforce what your child
needs to learn at home. Most of all -- do it nicely. Screaming and yelling do not have much of an effect.

Anyway back to the terms. For a more involved description please see NICHCY website.
** IDEA: Individuals with Disabilities Education Act. "it guides how special education and related services are provided to children with disabilities in the United States. States develop their own special education policies and procedures based on what IDEA requires. They are allowed to go beyond what IDEA requires–and frequently do, because the law leaves a great many things to state and local discretion–but they are not permitted to have policies or procedures that are not consistent with IDEA’s provisions."
** Child with a disability. Generally speaking "means a child evaluated in accordance with §§300.304 through 300.311 as having an intellectual disability**, a hearing impairment (including deafness), a speech or language impairment, a visual impairment (including blindness), a serious emotional disturbance (referred to in this part as ‘‘emotional disturbance’’), an orthopedic impairment, autism, traumatic brain injury, an other health impairment, a specific learning disability, deaf-blindness, or multiple disabilities, and who, by reason thereof, needs special education and related services."
** FAPE. Free Appropriate Public Education. special education and related services that are provided at public expense, under public supervision and direction, and without charge; meet the standards of the SEA, including the requirements of this part; include an appropriate preschool, elementary school, or secondary school education in the State involved; and are provided in conformity with an individualized education program (IEP) that meets the requirements of §§300.320 through 300.324.
** IEP. Individualized Education Plan. This means "a written statement for each child with a disability that is developed, reviewed, and revised in a meeting", usually held yearly. This gets involved with many facets like measurable goals, what the child will or will not participate in, alternate assessments, adaptive technology, etc., so please read about it on the site.

To learn more terms, go here.

Thursday, January 9, 2014

Getting Elderly Parents Organized in the New Year.

With the new year starting, we all get excited and hyped about setting goals and resolutions. We have the usual - eat better, exercise more, be more patient with the kids (or elderly parents), and of course, GET ORGANIZED! As we run out and buy many colorful plastic totes and labels and "Sharpies", we may tend to forget that it probably is a good idea to get mom and dad organized as well.

1) Many eldercare sites remind families of the legal paperwork that should be in place; if not start working on the Power of Attorney, Living Will, etc, --- VERY important to do. Sites to visit: Family Caregiver Alliance,, A Place for Mom, ElderCarelink.

2) Also important are the more day-to-day tasks to get a handle one. I remember trying to get mom to let me pay the bills or at least supervise the payments - she would get the statements and want 'to look them over to make sure all charges are right'; she liked to match them up with the receipts. Fine, but what ended up happening is they would land on her desk in a mound of paper, sometimes never to resurface and then be late in payment. It took awhile but I convinced her that letting me pay the bills online was a good idea. BUT I would take the statement first, pay it, then bring it back to her telling her to look it over (which I had already done anyway) letting her know that the payment amount could be changed if there was a problem. My in-laws like to do something similar and my husband is convincing them that he can pay it online while they stand over his shoulder watching him because things were getting lost on the mound of paper on the desk. You can check with your local department of elderly affairs - here is ours so you can get an idea of what you may need to start getting more involved with. Which leads to....

Wednesday, January 8, 2014

Wonderful! Thank you Hiranya Raman. No more words needed!

Your Mother carried you inside of her womb for nine whole months, she felt sick for months with nausea, then she watched her feet swell and her skin stretch and tear. She struggled to climb stairs, she got breathless quickly and even a simple task like putting her shoes on was a huge struggle for her. She suffered many sleepless nights while you kicked and squirmed inside of her and while you demanded that she scoffed junk at 3am, she then went through EXCRUCIATING PAIN to bring you into this world. She became your nurse, your chef, your maid, your chauffeur, your biggest fan, your teacher, your agony aunt and your best friend. She's struggled for you, cried over you, fought for you, put herself second for you, hoped the best for you and has driven herself insane with worry for you but never has she asked for anything in return because she loves you and did it all on love alone! Most of us take our Mums for granted but there are people who have lost or have never even seen theirs. If you have a loving Mother who did all of this for you, you are very lucky, never devalue her worth because one day, you'll wish you hadn't!

Sunday, January 5, 2014

Caring for someone does not always mean the 'norm'.

Let's hear it for the Memphis Grizzlies who recently drafted its newest & youngest member who was given his own mock pressconference, checked out the locker room, & was part of a team photo.
The wonderful people at Make A Wish granted 8 year old Charvis Brewer his wish of being part of the team. Charvis has cerebral palsy and has his mom and aid to help with his daily needs. The only thing he doesn't need help with is his overwhelming support of the Grizzlies. The surprise 'draft' came during a family brunch in Memphis when the Grizzlies announcer rushed into the dining room and announced that there was a supplemental draft and Charvis was chosen! As the story goes: "Mike Conley, a guard for the Grizzlies and a favorite player of Charvis’, joined the festivities with a jersey made for the team’s newest member. A limousine then ferried the Brewers to the basketball arena where the players awaited Charvis’ arrival. The whirlwind included eating lunch with the team, watching practice, visiting the weight room and quizzing the players about basketball. Miranda Harbor, director of community outreach for Make-A-Wish Mid-South, said Charvis was thrilled and quickly took his place on the team, even offering suggestions on player positions and strategies." Everyone involved was thrilled. The team just as quickly embraced Charvis. “He’s a great kid that comes from a great family and is so full of life,” Grizzlies CEO Jason Levien said in a statement to “We are a bigger fan of his than he is of ours.” Charvis and family will be attending a game, watching from a box seat but will be able to give high-fives to the players as they run out onto the court. For the full story, read here. For more good feeling stories, read on and on....

Popular Posts

4 Signs of Caregiving Stress Overload

ElderCarelink email posts 4 signs that should not be overlooked by you, the caregiver, or a close family member or friend. They report that even though the immediate caregiver may not be helping in direct care, the mind is never far from the needs of the older person, thinking about meals, falling, medications. Take the opinion of a family member or friend if they are telling you that you are stressed. Four signs: you skip your own physicals; you isolate yourself from others; you eat and/or drink too much for good health; you are short tempered with the elder, your spouse or your children. If any or all of these sound familiar, take a break no matter how short in order to recharge. For more information on caregiver stress see ElderCarelink


You can check out my ranting and stream of consciousness writing about looking at adult service providers with Will.

A Caregiver's Poem

I was looking through a 'Caregiver's Blog: Senior Care Support' and came across a poem that was shared by a writer, Dana, from the blog. The poem was written by Becky Netherland and Dana's grandmother shared it with her. I thought it was great and there is not much to say about it - just read!!! Enjoy!!

Grandma’s Pearls of Wisdom:
(picture from Caregivers Blog)

I’ve traveled paths you’ve yet to walk
Learned lessons old and new
And now this wisdom of my life
I’m blessed to share with you
Let kindness spread like sunshine
Embrace those who are sad
Respect their dignity, give them joy
And leave them feeling glad
Forgive those who might hurt you
And though you have your pride
Listen closely to their viewpoint
Try to see the other side
Walk softly when you’re angry
Try not to take offense
Invoke your sense of humor
Laughter’s power is immense!
Express what you are feeling
Your beliefs you should uphold
Don’t shy away from what is right
Be courageous and be bold
Keep hope right in your pocket
It will guide you day by day
Take it out when it is needed
When it’s near, you’ll find a way
Remember friends and family
Of which you are a precious part
Love deeply and love truly
Give freely from your heart
The world is far from perfect
There’s conflict and there’s strife
But you still can make a difference
By how you live your life
And so I’m very blessed to know
The wonders you will do
Because you are my granddaughter
And I believe in you.

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