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.

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.

Mr Harvey

After fostering puppies in San Diego this past year and finding such a soothing comfort from their love - I found my perfect pup. 

Harvey Pierre Kavitz

I have always loved the French Bulldog breed and after further research fell more in love. The perfect apartment dog - lazy, a bit stubborn, no barking and a smaller breed. We picked Harvey up at a breeder in South Dakota nearly 2 months ago and have been in love since. 

Robin and the residents in her unit have been introduced to Harvey a few times - some really gravitate towards him. Dogs have such a calming ability and we have noticed that in Robin.

Yes Robin, the non animal lover has taken to Harvey slightly. We're hoping he can bring both her and I laughter, love and peace. 

Easter 2014

Although traveling any distance with Robin now feels like packing up a family of little ones in a car and a never ending day of saying "no" and redirecting... I wouldn't trade it for the world. It's exhausting and every detail must be thought out. What will she wear as comfort is key, her medications need to be pre portioned, snacks available at every moment, thicket for her liquids as every sip of juice needs to be thickened, and a movie for nap time. It takes preparation and patience. Then for a big holiday meal - the family has to be cautious what is sitting out because unlike a 2 year old, Robin can reach anything on the counter but her diet is limited.

Needless to say, time with family is priceless. Robin was able to visit with her 4 siblings, sister in laws, many nieces and nephews, and her own Mom for the day in Medford, MN.

We are blessed for these moments.

Nick & Robin enjoying some quiet time

Big smiles!

Golf cart ride around the farm

Family picture

Nick, Robin, Jeannie 

jazzing up Robin's home

Last night we added a little color to Robin's room...

And lots of new nail polish colors - she loves getting her nails painted.

And a stash of fresh new towels along with a shower chair 

a little recap from Alton's April Birthday Celebration

lots of smiles from Robin!

click here:
Alton's April Birthday Celebration

what do you shop for?

Today I ordered my 58 year old Mother a walker and shower chair. I am 26.

After noting that her balance is declining rapidly and her muscles in her legs are quite weak making her walking risky, a walker was suggested. And when I bathe her she has trouble standing up in the shower so a chair would make it more comfortable. 

So I did some research and ordered online. After clicking the "purchase" button - Amazon strategically showed me suggestions for purchases based on my previous shopping. It stopped me in my tracks, how different my life is. What do normal 26 year olds shop for? 

Good books about romance, pool floaties for when I lived in San Diego, plastic wine tumblers, and a camera lens for my DSLR were the suggestions. 

I wouldn't ever change the opportunity to care for my young Mother as I have grown significantly, learned the value of our lives more than many ever get to, and given back to her just a morsel of the care and love she gave me. 

I do wonder sometimes what life was like just a year ago - it seems so far away. Moments like today when my suggested shopping list is far off from my new reality remind me to just breathe and accept the journey.

food she loves!

Spicy Mexican food = Robin's middle name

Unfortunately spice and chips aren't part of her diet plan because both make swallowing difficult. With that said she still loves Mexican.

If you swing by for a visit or meal time (lunch @ noon or dinner @ 5) or anytime really, feel free to bring her Chipotle..

Here's the perfect order:

Bowl with pinto beans, chicken, corn salsa, cheese, guacamole. No chips or drink.

When you serve her it's easiest to ask the staff at Alton in her unit for a smaller plate and then chop up the chicken into smaller pieces. Give a few spoonfuls at a time on her plate.

Today she are 3/4 of a bowl! It was a miracle and I felt so accomplished getting her to eat that much. Mission calorie load!

enjoying the outdoors and spring weather

Spring is nature's way of saying, "Let's party!"  -Robin Williams

And that's exactly what we plan to do! Live and enjoy every moment of springtime with Robin.

This weekend we went for 2 walks outside for fresh air, a change of scenery, good conversation, a little exercise, and lots of smiles. 

As you can see below, Robin has lost significant weight from not eating as much, walking constantly and not utilizing her muscles. She has developed a limp in her step as well and her foot tends to drag along. We're looking into solutions to help her walk but for now enjoying walking hand in hand.

Mother & Daughter

Nick & Robin

       

Dolly, Nick & Robin

Family Walk!

Senior Prom Coming Up!

Alton has an annual Senior Prom and it's coming up Tuesday, April 28th at 6:30pm.

If anyone wants to join us, all are welcome!


Also here is the link to the April Alton Newsletter and Calendar:
http://www.illustratus.com/viewer/viewer.cfm?ng=501FAD4C-5056-B823-4E34-F06BE26443D9&rk=em