summer nights on the patio at Pier

Another fantastic dinner at Pier 500 in Hudson with Robin and many of her friends. I wish I captured more pictures but here's a videoo clip of the crew.

Thanks for all those who could make it - we'll be sure to do more. 

And thanks to Andy and Lori at Pier 500 for always setting us up with the perfect table - and the staff for giving the best service. Much appreciated!

highlights and happy!

Thank you again Kathy Stewart (from Hudson) for giving Robin a new summer hair do!

Highlights and a layered cut are perfect. Robin enjoyed the pampering and was all smiles afterwards.

Kathy - you are a blessing because this disease takes away a person's self-dignity and you bring it back to Robin with beautiful hair. Thank you!!!

Family Dinner in July

We spent this past Sunday evening in Medford with the family. Robin was a bit agitated and ready to leave from the moment we arrived but this seems to be standard for her now. We enjoyed the beautiful weather, all the farm animal, great food, and a ride around the farm property.

Sister Dolly and Robin

Gramma Donna

Cassidy, Todd, Dallas, Cael, and Camille

meeting Nick's Mom

As many of you know, Nick has been one of the greatest blessings to both my Mom and I. Fortunately he is the total package, as his family is just as wonderful. We've spent many weekends at the cabin together and time just visiting in the evenings. The other week Nick's Mom, Barb, came to meet and visit Robin for the first time. 

Instantly Robin had a smile and I could sense she knew the connection. Barb embraced Robin and jumped right into caregiving mode by giving Robin a foot massage. How lucky!

Paula aka "Superwoman" and "Psuedo Mom"

She's back from a long winter vacation and just in time to give me relief from the daunting tasks and time it takes to caregive. Paula Kimbllin has been such a guiding light, sounding board for my crazy thoughts, go getter, always up for the challenge, type A, tough love Psuedo Mom. She stepped in from the moment I knew something was wrong with my Mom over a year ago. She is selfless in her love and time - Doctor appointments, legal papers, send a fax here, pick up this, what do you think of this option, can you look at this facility. Anything I need, I know Paula will do and do to my type A standards in Superwoman time. Beyond words blessed to have her in our lives!

High fives to Paula!

girls night out

This past Thursday we enjoyed dinner at Robin's favorite, Pier 500 in Hudson. So many great friends joined and Robin knew them all, had a big smile, ate good food, and was truly content with the friendships and love surrounding her. We plan on a lot more of these dinners this summer.

Roxanne & Robin

Mari Gifford & Robin

Hugs from Carol Palm

Robin, Paula, and Carol

  

MaryJo, Robin, Paula and Carol

Perfection! Roxanne, Robin, Paula and Trixie

guardian angel

Both Robin and I are blessed that Nick came into our lives at the perfect time. It's apparent in the love and smiles she shows him, that she approves. She lights up when he walks into the room, knowing he brings comfort and laughter. 

Nick is selfless in giving his time, patience, love and words of wisdom. He is my rock and largely why I manage to get through the day to day emotions of this journey. 

I captured these last night as we visited Robin.

Robin's other daughters visit

9 years ago in August I was blessed to move to San Diego for college. On move in day, I met the other 20 or so girls on my floor and instantly we connected. Several of us became so close that we all lived together the following year, abroad Junior year, and at the beach Senior year. Martha and Lynsie are two of the girls that continue to be my best friends and Robin's other daughters.

We have all traveled the world together, spent many nights enjoying wine, celebrating Birthdays, gambling in Vegas, dancing at country concerts, painting walls in our many apartments, and often snuggling. 

Martha and Lynsie made the trek to Minnesota this weekend and we spent some good quality time with Robinator.

Gramma's 89th Birthday Party

This weekend we celebrated Gramma's 89th Birthday! Born June 1, 1925 - Donna Kavitz lives a beautiful life in Medford, Minnesota. With 5 children and lots of grandchildren, nieces, and nephews she is surrounded by her family. Robin is Donna's middle child and first daughter.

Robin, Ashley, Donna

video clip from the day

Ashley & Gramma

Robin, Linda, Camille, Gramma, Ashley, Lynsie

Robin loves Parker!

Robin and the boys

Robin and her buddy Cael

Robin walking with Martha

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.