I've written before about the need for help when you are caring for someone with dementia.  I told you how very much I appreciate all of the staff at Gentog for the loving care they give my Grandma.  I bragged about my brother who continues to call EVERY day at 6pm to take Gram away from her troubles...she spends 20-30 minutes every evening just talking and laughing with him right in the middle of what can be a really tough time for people with dementia.  His phone calls give me a chance to finish my work during the week, and they give my mom a break on the weekends.

Today I want to tell you about how my immediate family helps me every day. We have an intergenerational household.  Gram is with us 5 nights a week.  My adult children live with us.  My first (and most perfect!) grandchild also lives with us.  There are 7 people in this household...and 6 of us work together to care for Gram.  Here is how...

First thing in the morning, Gram gets up, puts on her bathrobe and finds her way downstairs to the kitchen, seeking coffee.  Thankfully my husband is an early riser.  That coffee maker is already on and full of the comfort she seeks.  Jim is there to share the Today Show with her while she drinks her coffee and I steal the time I need to shower and get ready for the day.  He's even taken to making her toast recently, so when I get downstairs she is ready for her morning pills.

When my daughter isn't working, going to class or dancing, she's also up in the mornings, greeting Gram. IT was Ebony that noticed  Gram's shoes were wearing out, and it was she that bought her new ones.  She carefully chose just the right "grandma" shirt and necklace for Mother's Day.  If she's up in the mornings, she helps make breakfast for Grandma.

Alex has always been the "mellow fellow" to my Gram.  There has always been a special place in her heart for him, and she still brightens when he comes in the room.  He is gentle with his answers when she questions him about where her room is (for the 25th time).  Yessenia married into our family 14 months ago, and I love her dearly for her soft, kind responses to Gram's fears and questions. One recent morning she found Grandma leaning against the rail, looking so sad.  She sweetly asked what was wrong, and Gram said she just did not know where she was, and it scared her.  Yessenia gently reminded her where she was, and guided her downstairs. 

And then there is our baby boy.  Braylon does not yet speak (he's only 3 months old!) But you cannot imagine the joy he brings to Gram just by being in the room.  He's learning to smile, making their interactions so much sweeter.  Just seeing a photo of him can bring Gram from an agitated state to calm.  Baby magic is something to behold!!

So as I continue on this caregiving journey, I thank God daily for my wonderful family.  Their help with Gram is the greatest gift they have ever given me. 

I'm working away today...trying to get the company bills paid and preparing to do a presentation about Gentog.  Then I see a notation that I have a message in Facebook...better go check it out.

My sister Julie lives in Germany.  She's married to a German man that she adores, and she's happy to be with him.  But of all the kids in the family, I think she was the closest to our parents as a young adult, and it was definitely hard to leave them behind to start a life in Germany so many years ago.  This week our older brother and his wife are visiting us, and that makes Julie think about being here too.  Here is what she wrote:

Am a wee bit jealous that you all are together this week...I would love to have come home. Our employees all get 4 weeks of vacation a year. We get 1. Life is not really too fair, eh? And, I would love to say, Gert, lets fly home for that week...but again, we can't do that. But, we have to count the blessings we have in life.

We have a roof over our heads and the soil is not ruined like in japan. I have a husband that kisses my hand at night before going to sleep and I find that so darned touching! I'm getting older, but am in fairly good health...and so is he. We have tons of candy to eat and champagne to drink and nacho chips because I order it wholesale!    Both our parents (you and me I mean) are still alive...and our grandma! We all like each other! And, I have red shoes. So, I guess my life is not soooo bad. OH and a pink sweater...gram would think that was important! And, we stay connected with this lovely invention facebook! So! One of these days, possibly God will smile on us all and we will find ourselves all together again, playing games and enjoying the sun and possibly (?) the ocean somewhere?

We will have patience...and we will always be together in our hearts. Every day and every hour of those days...because we are sisters. And that is a very strong bond! I love you more than I can put in words. You were my hero as a little kid; you are my friend as we are almost the same age now (you didn't age past 51 did you?) and maybe later? We will live at the ocean together and reminisce about our long, fulfilling lives and those great loves we had. But, that time is later, and I am not going to rush forward. I have spent so many years rushing ahead, trying to get past this or that...and now, I realize, I rushed through half of my life!? I'm going to start just enjoying each day!  Wow. I am pretty smart now that I'm almost as old as you!   lol

Yes, Julie, you are getting pretty smart now that you're almost as old as me.  I love you!!

Me...surrounded by my mom, my gram, my son and my grandson.

It's official!  I am now a grandma.  What an exciting time.  Little Braylon has blessed us by beginning the next generation of our family.  We now have five generations living...4 of the five living together in one house.  I really  DO believe that generations belong together! 

Intergenerational living is a blessing...but not without it's challenges.  Grandma has dementia, so living with her means being careful with noise sometimes.  But then, living with an infant means that too.  Living with Gram means watching tone of voice, because angry voices make her nervous.  With dementia she wonders if the anger is directed at her.  But then a young child feels that same thing, so we'll be careful with our tone of voice.  Living with a baby means lots of laundry.  Sometimes living with a grandma means extra loads of laundry in the middle of the week too.  A baby wakes up hungry, and he must be fed NOW.  A person with dementia that experiences low blood sugar from hunger can also be very cranky, and she must be fed NOW.
When you get right down to it, living with a grandma and living with an infant mean pretty much the same things...we need to keep the house safe, we need to keep them clean, fed and comfortable to keep the peace.  It also means that when we get it right we are rewarded with a smile or a snuggle that makes everything worthwhile.  Nothing better than a gram who smiles sleepily and says "I love you."  Nothing better than a grandchild that snuggles into your neck and tells you with his entire being "I love you." 

This time with four generations living together may last for just a short while...but I intend to treasure every day that I have with it.  I believe that generations belong together, and I am so blessed to live it.

Last night, after a perfectly lovely evening with Grandma, I helped her get ready for bed.  I retired to my room to work, and felt so proud that our living arrangement was going so well.  Pride...it's a fleeting feeling!!

One hour after going to bed, Gram got up, went to the top of the stairs and called down to my husband "Jim, what's going on?"  I went to calm her and put her back to bed.  She was MAD.  She was sure that Jim must have been rude to her...and this was HER house.  When I assured her that Jim would never be rude to her, and I reminded her that it was my house, she really got mad.  She questioned me repeatedly about who was paying the mortgage.  Had she not put any money in?  Well, she'd pack her things and be out tomorrow...after she goes to court to make sure what I am saying is really true.

Where did this evening go wrong?  I have no idea what woke her from sleep.  I don't know what dreams she was having, or what she was "seeing" as she walked from room to room.  I only know that she was mad and not reachable in the moment.  Did I handle the conversation appropriately?  No.  I actually said at one point "Now think about this, Grandma..."  Really, Marcie?  You're reasoning with a person with dementia in the middle of an hallucination?  Brilliant move.

Of course when she woke up this morning, all was well.  She didn't remember the incident at all.  The beauty of dementia...when you screw up, you always get another chance!  So tonight after she'd been in bed for an hour, she came into my room to see when I'd be going to bed.  She was just checking to see if I'd like to spend the night at her house since it was so late.  I smiled and said, "Thanks, Gram.  I will.  Love you."  She said she loved me back, and went happily back to bed.

Now was that so hard?

Many families in America now face having to care for a loved one with dementia.  Families are often separated by many miles, and the burden of care falls to one sibling more than the others.  This can be a tough dynamic.  Without good communication and a lot of love, this can be a disaster that separates siblings.  But it doesn't have to be that way.

There is usually an obvious choice for who is going to do the majority of the caregiving.  Perhaps it's the oldest child.  Maybe only one child lives nearby the aging parents.  Sometimes the responsibility falls to the one sibling that is single...after all, they don't have other obligations, right?  However the decision happens, it is often the case that one sibling bears the majority of the responsibility for caregiving.  But one sibling should NOT have to do it alone.

So you're the daughter that lives several states away.  You can't quit your job and move home when Dad becomes ill.  Your brother lives right in town, and he and his wife will do the majority of the daily care.  But you can help.  Here are some ideas of how:

• Schedule your vacations around Mom and Dad for now.  Maybe not every vacation, but at least once or twice a year spend some time with them.  Give your sibling a few days off while you take on the daily care.
• Call regularly.  Yes, I mean call every day.  Make it a habit to call Mom on your way to work.  Carry your cell phone on your evening walk and call then.  Listen closely, support your parents emotionally.  Let you know that you love them and have time for them.  And if you hear something different, pay attention.  You can be a caregiving partner from a distance if you stay in touch.
• Call your sibling regularly too.  Check in at least weekly to see how they are doing.  Do they need anything?  Do they need to bounce around ideas?  Do they just need to complain a little?  Listen, be supportive.
• The best gift my sister-in-law has ever given me were the words "You are the one that is there.  Whatever you decide, we'll support."  I AM the one that is here, and I see the day-to-day.  So I am the one that will likely make the decisions.  But it will be so much easier to do so knowing that my siblings have my back.
• Some days are just tough when you're dealing with someone with dementia.  Recently I was having a particularly hard afternoon with Grandma, who was getting cranky and insisting every 3 minutes that we must call her husband to come get her (he's been dead since 1988.)  I was losing patience fast.  I happened to be on-line, and my sister-in-law sent me an instant message asking how I was.  I wrote back that I wish she could come visit Cranky Grandma right now.  Two minutes later my brother was calling my cell phone, which was quickly given to Cranky Grandma...who immediately starting chuckling when she heard it was her "Favorite Grandson" (his words...her delight.)  That simple act and that quick 5 minute phone call changed the pace of our day and the evening was saved.
• Pray for us.  We need strength.  We need courage.  We need patience.  We need faith.  We need wisdom to make the right decisions.  Pray for those things.

Simply put?  If you can't be beside us physically, be there for us emotionally.  We may be the designated caregiver, but this is definitely a family project. 

Today I'd like to share a little bit about our Cathy.  She was our first employee at Gentog, and tomorrow is her birthday...so I think she's the perfect employee to introduce to you first!

During the Christmas holidays of 2007 Murt and I found our space, signed a lease and were ready to start building our dream.  I shared that in my family Christmas letter and mailed it out to many friends...including some families in my parish.  At midnight mass that Christmas Eve Cathy came over to where I was sitting with my family, hugged me, and proclaimed, "I want to be a part of this!!  I'll call you next week."  I was thrilled, as I'd hoped she would be interested.

Cathy and I were friends through church.  We had children the same age that were friendly in youth group.  I taught 7th grade religious ed, while she taught 8th grade.  My daughter loved her, and Cathy invited her to be the altar server at her daughter's wedding.  I most admired the fact that Cathy continued to teach religious ed long after her children were through the program (I admit guiltily that I quit teaching after 20 years...as soon as my youngest was confirmed.)  Cathy still has faith to share, and she's doing it weekly with the youth at St. Anthony's.

When Cathy came to interview with Murt and I at our empty site, she could see the vision.  She had years of experience caring for seniors in nursing homes and in private homes.  She had a clear love and passion for the elderly and for providing care.  She also had a new grandbaby, and insisted that baby Jane was part of the package...Wednesdays and Fridays Jane would be with her at work.  And, since we were building an intergenerational program, how could we say no to that?

And so Cathy became our first official Gentog employee...Director of Senior Care.  We've never regretted that choice.  Cathy has a true "joie de vivre".  I can't pronounce that phrase, but I think it describes Cathy perfectly!!  As I sit in my office, I often hear loud laughter coming from the Senior Suite...and Cathy's laugh leads the way.  Our seniors love Cathy.  Our children adore "Miss Cathy".  She is truly a good and loving person, with a deep faith and a drive to take care of people.  It is Cathy that made the rule "Every senior will get some love every day at Gentog."  Everyone will get a hug or a pat on the back.  Everyone will get some one-on-one attention.  Everyone will leave Gentog knowing they are loved and they are special.

It's Cathy that confidently says to anyone touring our facility, "There is NO PLACE like this anywhere."  And guess what?  Because she's here, that's true.  We are blessed to have our Cathy here.  Because of her, there really isn't any other place like this. 

We love you, Cathy!  Happy birthday.

I'm sitting here thinking tonight about Gentog.  It's a special place, it's a special feeling.  As Cathy often says, there is NO place like Gentog.  So I'm thinking tonight about what makes it special.  It's the people, of course.  God brought some incredible people together here to create a wonderful place.  I'm so blessed to be a part of this.

So I'm going to spend a few minutes today telling you about one of our key players...my friend Murt.  She is the co-founder of Gentog.  She's my co-president.  She's been my friend for almost 30 years.  She's someone I trust with my life, so it was easy to trust her to help me build this dream.

Murt is a woman of God.  She's a terrific mother that loves her two children with all of her heart.  She's a faithful and loving wife to her high school sweetheart.  She hails from South Dakota, and she's proud to tell you so.  She's a morning person (thank goodness!  Since we're open from 6:30 am to 6:30 pm, I'm happy to say she is able to get here to open the doors on time every morning without fail.)  Murt can keep a secret better than ANYONE I've ever met.  Really.  If you have a confidence to share, Murt's the one to call.  Your secrets couldn't be safer with anyone else. 

Murt is there when you need her.  Doesn't matter where or why.  If you need her, she's there.  I remember years ago when a mutual friend was pregnant and her husband was out of town.  She called Murt one evening to say that she couldn't bend over to load the dishwasher, and she really needed Murt to come do her dishes.  Most of us hearing that story the next day laughed.  We were sure that we would not have dropped everything to go load the girl's dishwasher.  But Murt, with her kind heart, must have sensed that what the young woman really needed was a friend.  She was pregnant and alone and feeling vulnerable.  She reached out, and Murt was there in a heartbeat.  The dishes got done that night...but I'm sure that the young woman who called her knew without a doubt that she was not alone, and that if she ever really needed something, Murt would be there.  That's a true friend.

When we decided to start a business together, I spent many hours discussing the possibilities with my family.  Everyone of them...from my grandmother to my parents to my siblings and my children said "There is no one better to start a business with."  There will be challenges in the coming years.  But with my friend Murt by my side, I don't worry about what we may face someday.  I know we can handle anything together. 

As Christians, we are taught from an early age that it's better to give than to receive.  I get that one...and I've tried to live it always.  This year, however, my Christmas lesson was to learn to be a gracious receiver of gifts.

Our business is growing, and we are so confident that we are doing what God means for us to do.  Every day we are reminded that our work is important to the families that we serve, and it is without hesitation that we put all of our time and money into growing this business.  Recently Murt and I decided that we needed to update our child care center to make room for babies.  We have several special babies that will be arriving in 2011...Lisa's daughter will arrive in January.  My first grandson is due in March.  One of our childcare families recently had another baby that will be coming to us soon.  Another has a new son on the way this spring.  Most of our childcare inquiries are for children under the age of 2...so it makes sense to grow in this direction.  But new cribs, rocking chairs, strollers, plumbing for sinks, and additional furniture to carve out their space equal lots of extra dollars.  Where would we find the funds?

Prayerfully we proceeded.  We started selling Avon products to raise some funds.  When people heard what we were trying to accomplish, many stepped forward.  Some families wrote checks and said to use the money for the baby room.  We moved forward with our plans.  Then the holidays happened.  Both Murt and I received gifts from our siblings and parents that were checks intended for Gentog. 

I received notes that made me cry tears of joy.  "This is a gift in honor of our grandparents and for all of the wonderful things that happen at Gentog."  "In memory and honor of our grandparents and of our family that has loved and supported us in good and difficult times."  "We are donating this in honor of Grandma Helen. We are so thankful that you are all there for her and that Marcie and Murt have created such a special place for her to be at during the week.  Hopefully this will help you keep that dream going. We are all there by your side in spirit."

My heart is filled with gratitude this holiday season.  I'm grateful for the many families we are privilidged to serve at Gentog.  I'm grateful for the friendships that we've been blessed with.  Gentog is filled with loving Christian people that truly enjoy caring for the children and the seniors, and that really make a difference every day. We have the best staff in the world!   I'm grateful for my dear friend Murt.  I'm grateful for my husband that supports this dream by being here to help every day.  I'm so appreciative of the gifts given this Christmas.  The money will help...the thoughts and prayers and support behind the gifts will be treasured forever.

As we put 2010 to rest and look forward to 2011 and our 3rd anniversary, I thank God for all of the blessings we've received, and I pray that He will continue to provide what we need to serve Him by serving our Gentog family.  Happy New Year!

Caring for someone with dementia is like riding a very scary roller coaster.  This weekend we were heading very quickly down with Gram.  While staying at Mom's house, she became very ill.  Mom called me to let me know that they were headed to the hospital.  I was at work, and told her I'd be there as soon as I was done.

The trip to the Newberg hospital was familiar territory.  It was only 6 months ago that Gram broke her shoulder and spent a week there.  When I walked in the room, I saw Mom and Gram and Uncle Gary.  Gram was definitely sick...but well enough to greet me.  Mom and I immediately went into planning mode...easier to do this time than last.  I drove her home to be with Daddy for a few hours, then I returned to the hospital to keep watch.  Mom returned to spend the night.  Sunday I went to spend the day with Gram so Mom could go home to care for Daddy.  We even trusted the hospital staff to watch over Gram without us on Sunday night.

Monday morning Mom went to be with Gram early in the morning.  I went to work.  Then I got the call.  Mom was very upset.  Gram was saying cruel things to her, Daddy was very ill, and she needed me.  Thank God for my wonderful Gentog staff.  Everyone pulled together to get the job done and sent me on my way to take care of my family.  I fully expected Gram's mood to brighten with a new person visiting.  After Mom left we were OK for a little while.  And then the storm hit.  Gram was angry...very angry.  She threw things.  She bit her hospital bracelet off, and pried her IV out of her arm.  She told me that she would never forgive me...although she couldn't articulate what she was mad about.  She wanted to call her long-deceased husband.  She needed to get home to care for her young children who were waiting for dinner.  She needed to get to Forest Grove to see her husband who had been injured in an accident.  She did NOT want to be trapped in the back room of the store...and that is what I was doing.  It was horrible.  I've never seen her so angry and I've never felt so helpless.  As she walked the halls in her hospital gown, asking everyone she saw to help her call her husband, I prayed that the staff would understand.  My cousin came to help me calm her, the nurse gave her some meds, and we hoped for the best.  We had a good conversation for 30 minutes, and then she began to search the room for her shoes.  She needed to go home RIGHT THIS MINUTE.  When she gave up that quest, she made and remade her bed.  She would not calm down.  She would not rest.  After several hours, we gave up.  We tucked her into bed, hoped the staff could keep her there, and we went home.  By the time I reached my house, I had a fever of 101.  I was wiped out.

This morning I awaked, and realized that I felt OK.  My fever was gone.  I called my parents' house and Daddy said he was feeling much better. Prayers were being answered.   I got to the hospital to find Mom in the hall, after talking to the social worker.  She could not bring Gram back home to where Daddy had been ill so recently, and she didn't want to burden me if Gram was not going to be her normal self.  I assured her that I was feeling fine, and that we had to get Gram back to familar surroundings.  We got the discharge papers, and loaded Gram into the car. On the drive home, we listened to my iPod's country mix...familiar songs that always make her smile.  She smiled, she tapped her fingers and she told me how much she was enjoying the songs.

When we got home Gram settled into her rocking chair by the fireplace.  We watched our recordings of the Ellen show.  She chuckled and rocked and was happy.  When Jim got home she visited with him.  She told stories of her days at Gentog.  (She's never done that to us before).  She reminded me to call about her hair appointment.  She asked about my kids.  She was definitely in the moment and remembering recent activities.  She was herself again.  Whew.

I fear the day that dementia takes her away forever.  I glimpsed that yesterday, and it was horrible.  I pray that we never actually see that day.  And I promise to treasure every good day going forward. 

To My Caregiver - A Poem by Marcie Jones

When my eyesight fades and my hearing muffles,
My hands don't work well and my feet only shuffle,
You are here.

When my memory dims and I dwell in years gone by,
I ask the same questions or I just sit and sigh,
Still you are here.

When I need help to stand and the bathroom's too far,
When I want to go places, but I can't drive my car,
Thank goodness you are here.

I know it's not easy to see me this way,
When I don't remember the things that you say,
But, still you are here.

I may not express it, but my feelings are true.
I've been blessed with an angel, and that angel is YOU.
Thank God you are here.