a good blog about FTD from a Twin Cities writer

From research and hours of reading about FTD online - I found this writer right at our very own Twin Cities Star Tribune. Dan Browning writes about his journey with his wife's diagnosis of FTD and eventually ALS too. He puts it so simply - what the disease does to the person and those around them. His wife's struggles are so similar to my Mom's progression that it has drawn me in.

Open this link with a box of tissues in hand...

http://www.nextavenue.org/expert/dan-browning

the paperwork is unending

When this journey first started and it became more and more clear that Mom couldn't handle her finances and bills, I bought a simple filing system to get organized.

Shortly after, I became Financial and Healthcare Power of Attorney at age 26. I had to find out where all her finances stood - which banks, how to access them and not allow her to get money. What investments she had and real estate. Selling her Palm Springs property quickly so we had money. And then all the Doctors bills, health insurance changes, and access to medical records.

So I upgraded to ...

And eventually tax audits and penalties, a new living facility, new Doctors and insurance, Social Security Disability, applications for everything you can think of. Then all the receipts and filings for 7 years of taxes in case more audits happen. 

Let's just say Robin kept most everything which is good but now I have two of these and expanding to a third...

This disease is emotionally and physically draining but more so is the administrative tasks that go with caring for someone. In one year I have amassed more knowledge about taxes, finances, POAs, spend down, SSDI, insurance, HIPPA then many learn in a lifetime. I am by no means an expert and every piece of paperwork that shows up in the mail generally requires some research. Someday I will turn this knowledge into a career to help others in this position. I am thinking an online website full of resources along with 1-800 helplines, iPad apps, organization books, and one on one consulting. For now just trying to keep up. 

walking and talking

While the pictures and videos on this site share the beautiful and happy moments with Robin, it isn't always whip cream and cherries on top with Robin. Her disease has rapidly progressed recently. I'm not sure if it's attributed to the weather, medications, lack of stimulus in her environment or just what happens but today versus 2 years ago versus 2 months ago is far different.

Her speech is most noticeably different. While the nursing aides, Nick and I spend lots of time with her - we can make out most sentences if we try - as she only has about 10 phrases she repeats. For those visiting or trying phone calls, it's quite rare to make a full conversation. Many times we sit in silence and enjoy just being present.

Robin's walking and balance have declined as well in the past few weeks. She has fallen several times from imbalance and is unable to get herself back up. She refuses to use her walker because she knows it's defeat. 

Last night Robin fell quite hard. Luckily she didn't break anything but her ankle and knee are swollen, bruised and painful. I got the call late at night so Nick and I rushed over. We know these calls will come more frequently but it was the first call at night and from a RN called in to check on her. We laid with her in bed and had the most peaceful moments. While I cried at the loss of my Mom, she whispered "I love you" and wiped my tears. This moment I will forever remember. I snuggled with her as Nick massage her ankles and feet to calm her. My mind raced from how is this happening to me - to HER - so young and then my mind would turn to Nick and how blessed I am at our new love. It was bittersweet.

Today Robin knows her ankle isn't right, doesn't appear to be suffering and is still stubborn as always. She refuses her walker still and has been asking for a wheelchair. With the help of one of out favorite aides, I made Mom stand up, and lean on us both to walk about 8 feet in what seemed an eternity. She kept mumbling I need the wheelchair to which I responded "No, you are too young to give up yet." It seemed to click with her because each time she would then take another step. I know its the progression of the ALS part of the disease but the weather just turned nice and the nights are longer so I am not ready to give up beautiful walks outside. 

Royal Spa Day!

Today Robin got the Royal Spa Treatment! Her niece Elissa came up from Owatonna to help me give Robin a much needed cleanup.

She showered willingly - this isn't an easy task as most times she fights it. We shaved her legs and underarms - she was rocking the French look and hadn't shaved in a few months. Styled her cute hair. Then a pedicure and manicure - with black nail polish - the absolutely only color she will wear.

Then her nephew Tony joined with her great-nephew Devontae and great-niece Ondreah for a casual afternoon. Robin was mellow and smiling.

Time with Mom

May 2014 - time with Robin, Ashley, Nick and Harvey

Robin's new style

Thank you Kathy Stewert of Stewert-Anderson Hair Co in Hudson for the beautiful new hairstyle!

Robin's hair has grown long the past year or two and it was time for a healthy cut. She continuously mentioned Kathy and lucky for us Kathy came to Alton. Robin sat still long enough for a cut.

Senior Prom at Alton!

Robin ready for Prom

Corsage time

Dancing

Easter Videos

Some footage from Easter 2014 in Medford, MN

Gramm and Robin @ Gramm's House

Robin decided to clean the kitchen

Sister-in-law Jeannie, Niece Anna, Brother Dale @ Dale & Jeannie's House

Gramm, Jeannie and Robin enjoying some quiet time at Easter

April Afternoon

Purchased a video recorder to capture moments with Robin...

Smiles

Kisses with Nick

the "boyfriend" Alan from Paris

The Alton Memory Care May Newsletter

Click here for a link to the May Newsletter at Robin's home. 

If you want to join for any events, Robin seems to like music times. I can let you know details if you have a specific day in mind.

Also if you just want to visit and would like me to join you (you can follow my cues), let me know when works for you. Robin's number of visitors is drastically less lately - we know the distance from her friends and family makes it difficult plus the dreaded winter weather doesn't make a for an easy drive. Even if it's just to watch a movie with her, a 15 minute stop in, or a meal together - I will join you if it makes the visit easier.