Happy New Year

I made it through Christmas without much trouble. And I got a nice treat on Christmas Eve at the midnight mass. An elderly gentleman sat next to me. He must have been at least 80. He winked at me several times, just like my dad did. It felt good. I wonder...was that a gift from my dad? I say yes.

And now, it's New Year's Eve. In a few hours, I will be able to say that my dad died last year. Not much comfort because it still feels like yesterday that he was here. We all lose our parents at one time or another. It's not an easy thing, but it is inevitable. (When someone died, my dad always used to say, "well, that's life!") I guess I realize this and know that it was his time, or was it my time to lose him? His staying with us was totally a gift that I am still grateful for every day. I was totally blessed...oh oh, tearing up!

Happy New Year! Wishing a healthy and happy 2010 to all!

And...check out this link. It's about Ginkgo biloba, which many have been taking to help with brain health and memory loss....
http://www.usatoday.com/news/health/2009-12-30-ginkgo30_ST_N.htm

Rosy Christmas

I have been asked if Christmas time is going to be hard for me this year. We had my dad with us the last two Holiday seasons and it was great to have him here. But over the last 20 years, I have only spent a total of 4 Christmas times with him. So Christmas has not been a time devoted exclusively to my dad. Yes, I have lots of Christmas time memories of him back in Michigan. We all have memories of spending the holidays with our parents. They change as we grew up, but still, time with our folks is always special...I know it was for me.

As I was putting up the tree this year, I thought of that first Christmas my dad was here in 2007. He helped me put the decorations on the tree and we talked about the ornaments...some from him or my mom. Last year, as his health was failing, I simplified the tree decorations. He was there with me as I hung the garland, poinsettia flowers, and bulbs. "Such a pretty tree" he would say.

I was baking over the weekend, and I remembered how, his first Christmas with us, my dad came and snuck dough from my bowl, or swiped cookies as they laid on the cooling rack. Last year, I served him warm cookies and milk as he sat in the family room and watched me do some baking.

I don't anticipate Christmas time to be hard for me this year. I do expect a lot of memories of old, and a lot of more recent memories to be in the front of my mind. That's ok. I want to remember my time with him. Last year's Christmas was my last with him...and most of it was good. :) For now, I am refraining from reading my blog of a year ago. It may cloud my rosy outlook that I am struggling to hold on to.

11/14/09 Alzheimer's Memory Walk

It was a good day. It was a nice walk. There was music, laughs, hugs, families, and friends. It wasn't sad like I thought it might be... just lots of people wanting to share their hopes and dreams for an Alzheimer's Free World! Or at least that's my take on it.

Getting ready for the walk...

I just finished making this. I will be wearing it during the Alzheimer's Memory Walk in November, along with purple shoe laces, purple mardi gras beads, an Alzheimer's Association T shirt and a cap decorated with purple do dads (no pun intended).

I have listed those that I knew, or friend's loved ones, that once traveled the Alzheimer's journey...my dad, my Aunt Gini, Tom's Uncle Don, Renee's mom, Lori/Cindy's dad, and my college roommate's dad.

I've also listed those who continue to courageously live and do battle with Alzheimer's...my dad's friend, Janice's mom, Stan's mom, Emma's husband, and my neighbor's mom.

They, and their families, will all be in my thoughts and in my heart as we walk, as they are every day.

This is weird...

I glanced at the calendar...October 18th. A thought went through my mind..."they" should be getting to Florida pretty soon. I'll have to call "them".

"They and them" = my dad and his wife. They drove to Florida every year about this time for the winter. The last time they did was the winter before my dad came to my house. They never let anyone know when they left. They'd say they would be leaving "soon", and then all of a sudden, I couldn't get hold of them on the phone. Then, I'd try to estimate their arrival time and start calling the place in Florida. They never let anyone know when they arrived there. Thankfully, they always arrived safe and sound. But during that time of travel for them, I was always worrying.

This year, with autumn and the holidays approaching, I suspect I will be recalling our last ones together....hopefully, I'll think of the good stuff.

And the march is on....

This is the link to my page for the Alzheimer's Memory Walk. If you can...thank you! If not...think of us! And thanks for that too!

http://memorywalk2009.kintera.org/faf/donorReg/donorPledge.asp?ievent=294345&lis=1&kntae294345=2EFD1E6FB04C4774B82B00E3AE98C1B0&supId=273427144

Smiling

Sitting in my office doing paperwork and thinking about my dad.

For your information...

Today is World Alzheimer's Day.

According to the 2009 World Alzheimer's Report, newly released today from Alzheimer's Disease International (ADI), there are 35 million people with Alzheimer's or another dementia.

There are 5.3 million Americans with Alzheimer's

There are 10 million Alzheimer caregivers.

There are 35 million people with Alzheimer's around the world.

There are 78 million US baby boomers who will be impacted by Alzheimer's disease.

There is a $148 billion annual societal cost to our nation when it comes to Alzheimer's patient care.

The US government invests $428 million dollars in Alzheimer research as compared to $6 billion for cancer, $4 billion for heart disease and $3 billion for HIV/AIDS.

FYI

Alzheimer's Association Memory Walk

Last week was my support group and Renee' (group facilitator) had a great idea! Guess what I'm going to do with the rest of our group! http://www.alz.org/memorywalk/overview.asp
Is there one in your neck of the woods that you can do to help raise funds to work on a cure for this disease??

5 months + 1 day

It is hard to believe that it has been 5 months since my dad died. In someways, it seems like it has been forever since I've seen him. But in other ways, it seems like it was just yesterday that he was here. I have found it easier to think of the yesterday scenario. I like thinking that he lived with us. I like remembering meal times together. I like reliving table games, swinging in the backyard, taking a walk with him. For the most part, I have happy thoughts of our times together here. Although the Alzheimer's is there in my head, I am concentrating on the dad that I have always known, and not trying to focus on that journey. But still, I'm grateful for that journey.

I have reclaimed my office and I'm happy to know that I can be there without being sad. It looks completely different than it did when my dad had the room, and I'm sure that helps out. But I also think that part of my acceptance of the whole thing is my knowing that he is so happy now! No more confusion, meds, illness, pain...he just feels great! And he is in a great place too! :)

Some thoughts

Sometimes I wonder why I keep adding entries to my blog. After all, I am not "caring for my dad" anymore. Sometimes (although not often) I wonder why I keep going to the support group for caregivers. I'm not a caregiver anymore.

Yesterday, I received an email from the facilitator of the support group. She told me that one of the women from the group wanted to talk with me and asked if I would call her. So I did. We talked for quite a long time. I listened to a very familiar story, and my heart was breaking for her. But I definitely knew what she was saying and I did understand. I gave her the site for my blog and pointed out where she should begin reading, as I was once in her very shoes.

I got an email from her this morning. The parts of my blog that she read were helpful to her. I'm glad. The journey of care giving is difficult, and stressful. It seems that once you get used to it (if ever), the care giving seems to have some predictability and routine. It may not last long, but for that time, your skills feel adequate. But then something changes, and the stress level increases, the questions arise, the self doubt emerges, and the guilt or regret eats us up. Doing the best we can for the moment is all we should require from ourselves. There is no way to do any better if you are doing your best and doing what you think is beneficial for your loved one. There is nothing more compassionate or loving for them...or for us.

A giggle

There is a certain amount of joy in my heart being able to talk about my dad and get a good feeling.

This evening, Tom and I were watching TV and there was a commercial that Family Feud is coming to Phoenix and they are auditioning families. I said, "Wouldn't that be fun? But we wouldn't have enough here to go, they want 5." Then I thought, well, if my dad was still here we could go. I can just hear them ask him a question and he would reply, "Well, if you don't know the answer, I'm certainly not going to tell you!"

That was a good giggle. :)

missing sounds

Every once in a while since my dad died, I have times when I am angry with God. Not only did he make my dad go through a destructive disease, but then he had the nerve to take him. There are other times, I am so grateful to Him for letting me be the one that cared for him and helping me learn the ultimate lesson of love and compassion. Such a flip flop of thoughts, and I know it.

I went to church this evening with my son. My plan was to pray for another successful year at college for him. But it was out of my hands, as the priest gave a homily partly addressing grief. I tried to hold it together, but it was hard to do. Whenever I go to church, I think about my dad. Growing up, we went to mass every single Sunday. When on vacations, he always found the Catholic church in the area for us to attend. When I came home from college for a visit, he still got me up to go - and I dared not decline his "offer". The prayers in church do not change. The ones we say are the ones that have always been said. The Catholic church is strong on tradition, in case you didn't know. I hear my dad reciting the prayers. His intonations, his phrasing of the words, were always just a bit different from the congregation's, and his booming voice stood out. I hear him loudly singing the prayers and songs. I hear him sneeze or loudly blowing his nose there. I swear, he blew his nose every time we went to church...and in a handkerchief too. eeewwww! I see the seat that he and I sat in the last time we attended together. It made me sad.

I miss him.

Highly recommended reading!

For the last 24 hours I have been obsessed with a book...and I just finished it. "Still Alice" is a novel written by Lisa Genova. It is the story "about a young woman's descent into dementia through early-onset Alzheimer's Disease". Alice is a 51 year old wife, mother of 3 grown children, and a psychology professor at Harvard. The story is told through the eyes of Alice.

I was going to write about this last night after reading more than 1/2 the book, but opted instead to try to get a good night's sleep (unsuccessful too). After finishing it tonight, I so want to blog about it, but my sleepless night is catching up with me.

All I can say is, read this book! It is heartwarming, scary, imformative, and I wish I would have read it before my dad came to live with us. It has put a question into the front of my mind, the answer I will never really know. What were my dad's thoughts about his journey with Alzheimer's Disease?

A Pop-in

Every once in a while, a memory pops into my head. They usually make me smile.

Two years ago today it was July 12th, our wedding anniversary. I remember saying to my dad, "Do you know what today is?" He said, "What's the date?" I said, "July 12th". He said, "It's your anniversary". I was dumbfounded! "How did you remember that?" He said, "That date is etched on my heart". Wow, huh?

I guess it was one of those days that the synapses were firing smoothly. Or... it was so long ago that it was stored in his long term memory!!!

Some healing

Being a caregiver was something that I chose. I wanted my dad to have good medical care, a loving environment, feel safe, and be safe. My personal make up and my love for my dad helped with the learning process of caring for him. I am content with the care that we were able to give him, and happy that we were able to do it.

Since his death, I have been understandably sad. There are many things in my house that remind me of him. Every day. In every room. There are sounds that immediately take me back to him. The smell of certain foods remind me of him. If I read this blog, more often than not, I feel tears running down my cheeks. It is still odd not having to get home at a certain time so the caregiver can leave. I miss the caregiver being here. I miss my dad's laugh.

Returning to Michigan for his funeral was a journey unto itself. It was the worst thing ever "leaving" him there, and then returning home without him.

I have continued with routines, but almost in a daze. I know I have been quieter than usual with my family. I know I have not been outside of the house more than is necessary. I have been sleeping a lot. I have been laying in bed during the day and at night, hoping to fall asleep and escape. But then again, I have been having trouble sleeping. I have read that depression is anger turned inward. Angry? me?

It all came to a head the other day. Dealing with lawyers, investors, an empty room, a missing father... ok, I was angry. And I let it out. Poor Tom, he left to avoid it all. I took a shower and cried and cried and cried. I yelled at my dad. How dare he put me thought this!!! How dare he leave me!!! How dare he leave this mess to me!!! He lied to me. He told me that everything was all arranged!!! He said he had papers all organized!!! Then I yelled at my brother for leaving and not helping with my dad!!! And for not helping me with all the aftermath!!! What a mess I was, sniveling like a little girl as I fell asleep.

I felt quite foolish the next day. But I also felt better. I recalled that, throughout the care giving journey, I had to remind myself to take it easy. Do one thing at a time. When I did that, things just fell into place. So I have been trying to do that, with little helpful reminders from my hubby. And it's working too. Last Friday, I repainted my office with gleeful anticipation of my new space (and not trying to get rid of my "dad's room"). Today, I felt overwhelming gratitude to my dad for all he did to make this transition easier. I also put his glasses from his nightstand, and his sunglasses from atop his desk, into a drawer. I didn't toss them. I didn't donate the frames. But I did put them into a drawer. That's progress. :)

A sad day for me

Today is Father's Day and I am feeling very sad. I know I should be grateful for the dad I had and for the times I spent with him. I should be remembering the good times, and be thankful I was lucky enough to have him as my dad. Instead, I am focused on the loss. I wish I could do the grateful thing today. Maybe next year. Or hopefully, in a few hours.

A grateful daughter

When we left for Michigan, I felt like I was taking my dad home. It was a good feeling thinking I was taking him to be with my mom. Although, I know good and well that those ashes were not him, and that plot of land in Caseville does not contain my mom. But still, that's what it felt like.

And it felt like Michigan when we arrived last Wednesday. Chilly, yet hot and muggy. But for the end of May, it was not typical weather. Still, it felt like home to me.

Planning a funeral 2000 miles away was not impossible. It all came together. Last minute things were done on Friday like meeting with the priest, checking out the sound system in the church, and seeing where the lunch would be served. We all arrived at the church about an hour before the service on Saturday. We set up picture boards, put out cards and service programs, talked to those who arrived...and waited for what seemed like eternity for the mass to begin. Family and friends (and many I didn't know) filled the church. The service was beautiful. The music was great (thanks to Dawn and Smith), readings were done by family (thanks to Chris and Phil), offerings were reverently presented by cousins (Loren, Liz, Ben, Abby) and the priest's homily was...well, what can I say? I don't remember a word he said. I was fidgeting. You see, when I opened up my folder to get out my eulogy papers, there were 2 pieces of paper. The only thing bad about that was they were both my page 2. No page 1. Yikes. 1-2-3 breathe, Marcia!!! I ended up speaking off the top of my head, trying to remember what I had written, and adding lots of ums, I am sure. I am much better at writing, (or reading what I have written) than I am at off the cuff speaking in front of a crowd. But I made it through my imaginary page 1, and on to page 2 until I fell apart for the last 3 sentences. My lovely daughter came to the rescue and finished it for me. How does she stay so composed??? An amazing young woman! Thanks, Dawnie! :)

The mass, the luncheon, and the prayers at the cemetery were all part of the longest goodbye to my dad. Alzheimer's is often called just that - the longest goodbye. My dad, the "daddy" I grew up with, the one that yelled at me and my brothers, the one that brushed my hair, the one that blew his Pall Mall smoke into my ear when I had an earache, the one that had the loudest sneeze and laugh that I have ever heard, the one that taught me to drive, the one that used to drag me shopping on Christmas Eve, the one that beamed when I graduated from college, the one that walked me down the aisle with Mickey Mouse socks on, the one that held my babies with that look in his eyes, the one that cared for my mom - that dad had been gone for a long time. I say adios to Mr. Alzheimer's, the thief! You may have stolen my dad, but you gave me time to love him in a way that I could have never imagined. You brought out a part of me that flourished over the past few years. And for that, I am grateful.

The Eulogy

We are leaving in the morning for Michigan. My dad's funeral mass is Saturday. The church is in a small town at the "tip of the thumb" where my parents had a summer home, where my parents retired, and where my dad and his wife lived during the summers. I wrote a eulogy for the service. According to Dictionary.com a eulogy is a speech or writing in praise of a person or thing, especially a set oration in honor of a deceased person. I think I did just that in mine. I started writing it right after my dad died, and have been editing ever since. I think I am done. I have to be done. It's all printed now, tucked away in a folder labeled "service", and packed in a carry on piece of luggage. Wish me luck reading it. I am NOT looking up this time.

For my dad...

When I was growing up, I was afraid of my dad. He was a strict disciplinarian. He was loud, opinionated, kind of scary, and he was definitely the boss. And if you didn’t know it, he was always right, or so he thought. Yet, he was the one I always wanted approval from. I washed his car every weekend, and if I didn’t do a good job, he’d tell me …and then I’d redo whatever he said wasn‘t right. Nothing thrilled me more than having him tell me that I did a good job. When I got good grades, he rewarded me with praise, money, or sometimes, a special dinner out, just him and me. He never missed a concert, play, or sporting event that I was in. He taught me how to drive a stick shift, and gave himself all the credit for making me a good driver. He was the one I called for comfort when I was a stressed out college student. On more than one occasion, he would leave work to drive the 70 miles to my apartment, take me out for dinner and give me a pep talk. He was involved in cub scouts/boy scouts with my brothers. He played tennis and did long distance biking with guys that were 30 years younger than he was. He was a leader at our church and a good provider for the family. We were lucky enough to have a nice home, and when we were teenagers, my parents built a summer home, here in Caseville. I have wonderful memories of our times here, but my dad did scar me for life on the beach. Picture being a teenager and having your father strut his stuff while strolling along the shore and wearing a big straw hat…and a black speedo!

He and my mom retired to their home here. They walked, played golf, swam, and cross country skied. My parents were in the choir at church, had lots of friends, and traveled. My dad had a rough edge, but there was a soft side that I knew and loved. I will always remember the tender side of him when he and my mom cared for my sickly brother, our aging Aunt Mae, or when he held a baby. My dad took good care of my mom when she became ill, and after her death, he was lost. But it wasn’t too long before he remarried and began the second part of his life. He and Harriet lived in MI in the summer, and traveled to FL for the winters. They socialized with friends and enjoyed life together. My dad continued to play golf and do his wood carving, But my contact with him became less over the last 6 or 7 years. He stopped calling me, and when I would call him, he’d barely talk and our conversations were repetitive. And as the years went on, and I visited him more often, it became clear that something was up. And that something was Alzheimer’s.

When it was time for him to come to our home in Arizona, he came willingly. Never in my or Tom‘s imagination did we ever think that my big, burly, strong, loud, opinionated father would be living with us… and without protesting either. It was a dramatic change in our lives. And I can never thank my husband or kids enough for welcoming him into our home and adjusting their lives to accommodate him and his needs.

My dad was not a perfect man. None of us are perfect. But I think my dad lived the last years of his life perfectly. He maintained his dignity for as long as he could by refusing help, but then, accepted it graciously. His manners were impeccable. He warmly greeted visitors that came to our home and he expressed gratitude for everything we did for him. Each meal, tissue, pillow, medicine, or assistance with his self care - they were always followed with a sincere thank you. He kept his sense of humor and laughed with us…or sometimes at us, and he made us laugh with his wit and comments. He yelled at the ever talking commentators on tv sporting events , and he cheered for his team. He gave hugs, smiles, and told us he loved us - sometimes when it was said to him, and other times, spontaneously. He enjoyed visits by my daughter’s dogs, played and talked with them, and called them bums. We would go for walks, swing outside in the back yard, play table top games, do crossword puzzles together, and flip through books, magazines and newspapers. We were lucky enough to celebrate 2 Thanksgivings, 2 Christmas, and 2 of his birthdays with him. He taught me all about Alzheimer’s, and how to manage him - mostly by letting me know when we didn’t do it right. When we did do it correctly, he was a sweet, cooperative, and loving man. He maintained his faith in God by leading us in prayer before meals, receiving holy communion at home (although one time he said he wasn’t in the “mood” and refused to take it) and by praying through his pain. That “praying through his pain” was a good reminder to never underestimate the power of prayer…it was a relaxer, a pain medication, a spirit lifter, and a sleeping aid for him. It was a life saver for me.

My dad had unbelievable strength and dignity through the last few months of his life. I will be forever grateful that I was chosen to be his daughter - for he taught me the ultimate lesson of love and compassion. Although my arms can no longer wrap around his bald head and shine it up like I used to do, I do know that he is with me. It’s very quiet at our house now but I can still hear his booming laughter. And I know that the arms that welcomed my dad into everlasting life are wrapping around all of us to strengthen our faith and give us comfort.

rolling along...

A week from tonight, I will be running around like a chicken with my head cut off getting ready. We are leaving on the 27th to head back to Michigan for my dad's funeral mass and burial at the cemetery with my mom. Together again. :)

Planning all this from 2000 miles away has been a real challenge. I think I have everything ready, but whether or not it all goes the way I have planned...we'll just have to wait and see. And if it doesn't, it doesn't. The important thing will be done, that's the main thing.

But I have to admit, I think ashes are icky. I know my dad's ashes aren't "him", but his ashes are at my house. And we have to take them with us on the plane. Not in the suitcase, but carry them on with us. My hubby has volunteered to carry them. I use that term "volunteer" loosely, but he is going to carry them for me. Thanks, Tom.

The end of the school year has me real busy. My son is home from college now. Still working on my dad's stuff in my office (note the name change) and his estate. So much to do. I could be staying up all night doing stuff, but I know that's not good. I'm sleeping better now. Not great, but better. Melatonin is my friend.

I still expect to see my dad walking around the corner. When I hear the toilet in the hall flush, I think of him. There is still an empty place at the table when we sit down for meals. Sometimes, I take a whiff of the Old Spice body soap and smell him. I moved the furniture around in the living room and I can sit in "his" lazy boy chair now (which used to be mine). I missed my support group meeting last week because I shut my eyes for an hour nap and didn't wake up for three hours. Things are rolling along...up and down some hills...at least they aren't mountains anymore.

choosing the right words

Reading back through my blog (not always a very good thing to do), I see the words tired, overwhelmed, confused, unprepared, disorganized, and incompetent. I used these words to describe some of my feelings/thoughts during my care giving journey. They should be gone from my life, but they are not. I still feel them all. Not all the time, not every day, but when they hit - they hit hard. Sometimes, they are related to the journey with my dad, other times they are not. But I think it's all cumulative, and that is definitely overwhelming.

Reading back through my blog, I also find the words grateful, pleased, comforted, rested, happy, creative, peaceful, funny, sweet. I'm going to concentrate on these last ones for awhile.

A Dadism

On Mother's Day, my Dad used to sing a little catchy tune..."If it wasn't for your father would your mother be your mother? So remember Dad on Mother's Day!"

I am.

A new mantra

When I look back, dealing with my dad's needs on a day to day basis seemed second nature to me. Yes, it was hard. Yes, it was tiring. Yes, it was often overwhelming. But I miss it! I miss that good feeling I would get inside of helping him, figuring things out, getting one of those "ah ha!" moments, and spending time with him. Dealing with his death, at this moment, seems a lot harder than the care giving was.

Although I want to tie up loose ends, get my house back, get my old life back... I'm not doing anything to get that accomplished. I'm kind of glad it is taking so long for the death certificates to get here. (AZ is SO slow!) If I don't have them, I don't have to tie up those loose ends. It makes it... like it isn't true. Maybe that's why I have put off cleaning up his room. I did donate his clothing, but all the other stuff is still there. His prayer book and glasses are still on his night stand. His pictures are still hung up. The calendar is still on March.

I should be so much more organized and caught up now. I have so much more "free" time. But it's really hard to use that time. It's my dad's time. Allowing myself to grieve is my challenge. I know I am tough on myself. "I should be over this by now" I have heard myself say. "I should not be cying!" is another of my thoughts. Inside, I know these are both false. I have to deal with this in my own way for as long as it takes. The trouble is, I've never had to deal with the death of my dad after an extended care giving time in my home. I just don't know how to do it. But I do know that time will help. And I will be patient with myself. That's my new mantra.

THE AFTERMATH OF ALZHEIMER'S by Renee' E. Davis

Slowly the memories fade away
and you were left with barely a word to say

I watched over you, with all the strength I had
so nothing else would hurt you and times wouldn't seem so bad

Then as the disease progressed, I protected you even more,
holding the demons at bay, to try and even the score

As time marched on and we were losing our grip
I was bound and determined you were not alone in this never ending trip

I wrapped my arms around you, the least I could do
and promised you your dignify, I would always pursue

The shadows of the disease, were taking their toll
but I would never give up, forever safeguarding your soul.

As time grew nearer to the end.
I knew freedom was the only mend.

So I loved you enough, to let you go
and now with God, I'll see your glow

I am left here holding the piece of my heart
that promises me, we are never apart.

When I think of you, a smile crosses my face
and comfort surrounds me, knowing you reached that higher place.

God received an angel, when you entered his light
and it is my word of honor: your legacy will forever shine bright

by Renee' E. Davis


Renee' is the group facilitator of the support group I attended, and continue to attend. Her new book "The Aftermath of Alzheimer's Disease -what happens to caregivers after the loss sits on my desk waiting for me to start reading. I noticed the above poem as I flipped through the book.

I'm not sure how I will be using this blog anymore. I still want to write my thoughts in it somehow......I'll figure it out.

lack of sleep

My house is still very quiet. It is the first time that my husband and I have been alone. Everyone has to adjust to that at one time or another, I know. But I have two things to adjust to now.

I have found it quite difficult to change speeds. For the past year and a half, I have been in constant motion between working and caring for my dad. While it was happening, I just kept on going and accomplished quite a bit, although neglecting quite a bit too. Now, I just can't find a happy medium between that high gear and low gear. Or maybe I should say between high gear and stop. It has been getting a little easier at times, but there have been those days when I have to force myself to go to work. I am literally kicking myself out the door! I just want to sit. Maybe sleep, but that's not the best because then I can't sleep at night. I have been living on 2-3 hours of sleep a night, and I know that is NOT good. So with a little help from my friend, and now my doctor, I know I will be able to get a better night's sleep. Which may help. I hope.

missing him

It will be 2 weeks tomorrow since my dad died. At times, the days have dragged. Other days, they have ended before I knew they started. I spent the first week after his death making phone calls and running errands. I was wired and had so much to do. Between going to the mortuary, putting an obituary in the paper back in MI, designing prayer cards and service folders, planning the memorial service here (with my daughter), planning the service back in MI (still doing that), calling people, notifying appropriate companies/services about his death, gathering information for survivor benefits for his wife, talking with social security and veteran's administration... it all kept me very busy. I still have things to do, but they can wait.

I went to my support group the Thursday after... here I was, at the end of my care giving journey, and there were 3 new people at the meeting at the beginning of theirs.

We had a memorial service this past Monday at our church here. It was so nice...the readings we picked were perfect, the music was beautiful (my kids), and many friends of ours were there to help us celebrate my dad's life - even though most of them had never even met him. I thank them all for their support. I tried to do a eulogy - I had been working on it every evening last week. I made it 1/2 way through before I was rescued by the deacon. My very ugly crying face was up front and center. My words were read, even though they weren't in my voice.

I haven't cooked much, haven't slept much, haven't done too much since then. Outings to eat, went to a casino, saw a movie - they've been distracting. I miss my dad a lot. I know 2 weeks isn't long enough to grieve. When will this feel better? I'll just have to wait and see -

Heaven bound

My dad went to eat breakfast with Jesus and my mom this morning.

Wednesday evening...

I don't know what I would do without Hospice of the Valley. They are wonderful people who have made the last week bearable. They have quickly returned calls, visited 6 times since my dad came back to our home last Friday, and provided me with information, suggestions, counsel, and hugs. My dad's physical condition continues to decline. I think his pain is under control now and he is, for the most part, resting comfortably. This morning he softly said he loved me when I hugged his head, and he is holding my hand a lot now. He even held his care giver's hand, and Tom's too.

Knowing that my dad will not be with us for much longer is sad. It is heartbreaking to see him as he is. It is really difficult, tiring, and overwhelming to care for him. But I am going to miss him very much. I told him that it has been my pleasure caring for him, and it really has been. It's been hard, especially since his physical decline, but it would have been harder not to do this for him. Being able to spend the last year and a half with him has been wonderful, it really has been. Seeing him, getting hugs, playing games, laughing, sharing holidays, spending quiet time - these will be the things I will remember dearly. When he is no longer in his failing body and mind, I am planning on picturing him with my mom, brother, sister...his parents, his brothers and sisters, all those who were part of his life, and of course, with our Lord. He will be strong and whole, rejoicing in his everlasting life. And yet, I know I will be inconsolable for a time.

But in the meantime, I will care for him. I am trying to use the suggestions and help I get from friends and Hospice to make these days comfortable for my dad. This is not easy...the care giving or the accepting of help. But his comfort is of utmost importance to me, and every day, I pray that as he approaches his final journey, he will leave this one with a peaceful heart, love, and dignity.

Amen!

As I type this, I'm waiting for midnight to arrive so I can give my dad his scheduled medications. Looking back at this day, there have been better parts to it than yesterday, but more truths too. My dad's physical decline continues, and with the Alzheimer's added to that, they make for a challenging combination. For now, goal #1 is to keep my dad pain free. There's the reason for my waiting up til midnight and not missing pain medications. Made that mistake last night...not going to do that again. And the power of prayer is alive and well at my house. The Lord's Prayer has been a life saver in distracting my dad from his pain, refocusing him from his agitation, and calming him enough to fall asleep. Amen!

Truth

It has been a little over 24 hours since my dad came home. I am overwhelmed. I feel unprepared and disorganized. I'm tired (already) and want to take a nap. There is stuff all over the place that needs to get arranged, organized, and read. My dad seems to be doing ok. I, on the other hand, need a little help. Here's hoping that feelings of preparedness, organization, and competence come knocking on my door. Soon.

The 4th time's the charm!

When I went to check in on my dad this evening, I was so pleased to see that they had gotten the catheter in! Yeah! It was their 4th attempt, this time with a pediatric end. I bless them for trying again. I know it's not easy with my dad yelling and screaming at them. But hooray! This will make it easier to keep him clean, keep track of urinary output, and minimize the times when we make him hurt so bad.

It's a go for tomorrow. His room is all ready with a hospital bed and table. All the other supplies will be accompanied by the hospice nurse when she comes in the afternoon.

My dad is not on the oxygen anymore, but he is receiving breathing treatments every 6 hours. He's got an air filled topper to his mattress that changes the pressure areas every few minutes, so hopefully, that will help to keep his skin intact. Morphine is given every 6 hours, and more right before he is cleaned up. I hate Morphine. That look on his face tonight looked just like my mom's right before she died. He's looking off into outer space. Even when I put my face right in front of him and talked, there was no change in his expression. It's sad. I wrapped my arms around that bald head of his and told him that I loved him. He said, "I know you do." I'm glad about that.

I don't know how long my dad will be with us. That includes both at my house or elsewhere, or even on this earth of ours. But I am very grateful that I have been able to help him through this time. I have always wanted my dad to be proud of me. He always showed that to me when I was a child, teen, and adult. I know he would be proud of me now. Although he would hate that he is like he is and staying with me. But for now, I can't have it any other way.

ready, set, it's almost time

Things I have done or am doing since my dad has been at the hospice house:

1. I have gone to see him everyday. I have been going in the evenings, at dinner time, so that I can help him/encourage him to eat his meal. This evening, he was unable to feed himself. :( Too tired? Forgot how to? So I fed him.

2. I went and saw another hospice home and instead of red flags, this time, I got warm fuzzies. They do not have an opening at this moment, but will call me when they do have one. I'll deal with that when it happens.

3. I participated in discharge planning with the nurse and the social worker. My dad will be coming back to our home on Friday. A hospital bed and one of those mobile tables will be delivered tomorrow.

4. In preparation for the bed's arrival, all the stuff in my dad's room was removed. His carpeting has been shampooed. This evening. By me.

5. In my head, I am thinking of all the stuff we will be needing. I better write it down so I won't forget to get it all from Hospice when they come on Friday.

6. I am fighting a cold, cough, achy body. I just took NyQuil and decided to blog before it knocks me out.

I told Tom that I hate having my dad take Morphine. He was sleeping almost all the time before he started taking it, and he continues to sleep almost all the time. It's just that now when he does awaken, he doesn't look the same. He looks at me, but he's not in there. I hate it. But the alternative to the morphine is pain. And I won't have that for my dad. Who would have thought that rolling would make one scream? And when he is getting cleaned up, wow - I have to get far away from his room so I don't hear it. They have recently started to give him extra morphine about a 1/2 hour before they clean him up, and that reportedly is working. I was able to be outside the room last night and this evening. With his yuck I have, I have only stayed a half hour the last few days. I cannot risk him getting this so I stay away as much as I can. I probably shouldn't go at all, I know. It is selfish of me to go when I am sick.

Anyway...2 1/2 more days and he'll be back. I am praying for strength and continued patience. And I must say, it will be so nice to have him here again.

In a quandry...

This has been quite a busy week for me. Keeping up with stuff, and monitoring my dad while he is at the Dobson House has consumed my days. I have met with the doctor twice, and find her to be a very caring woman who not only wants the best for my dad, but listens to me too. He is on oxygen, and takes regular breathing treatments. He has not been out of bed the last 4 days, except for sitting on the side of the bed to eat his lunch while I was there on Wednesday. He is still swollen, but the diuretics appears to be working. When he is lying down, his legs are less swollen, but when he got up (sitting on the side), within 45 minutes they were huge and hard again. The increase in urine has irritated his skin and he has a large, sensitive rash in that area, in addition to a gross amount of swelling. Cleaning him has been painful, to the point where I have had to go to the end of the hall or outside because I can't tolerate the yelling from him. He is getting regular low doses of morphine, which seems to help a bit with that pain, but makes him groggy. He has been very cooperative with the staff through all the things they have had to do for him, to him. He thanks them (for putting him in pain!) He eats most of his breakfast and lunch, and I coax him to eat more of his dinner than he would have if I wasn't there. And he sleeps.

He has been there one week today, and I do not know what I am going to do when he is discharged. Yesterday I went and looked at a hospice home about a mile from here, but I was not impressed with the answers I got to my questions. Not at all. I am going to see another one this morning. Having my dad go live somewhere else, having someone else care for him is not a pleasant thing for me to think about. And I am not sure I want to do that. Having him live with us again, and all that entails, is overwhelming to think about. I have been told that I am not super woman. I know that. But I do know that I am a loving daughter and I will do what I think is the best for my dad. That one hospice home would not be the best for him. I'm not closed to the idea of him being somewhere else, not at all. I have to find a home that I feel 100% comfortable with leaving his care to them.

To be at my house, we'd need a hospital bed, wheel chair, maybe a hoyer lift (a sling that has a pneumatic lifting device). We'd need all the equipment that we already have, but may not be able to use it because my dad can't get out of bed. I can get him up to sitting on the side of the bed, but as of Friday, I could not get him to stand. He's dead weight and couldn't help enough for that. If here, his regular care giver, who is very willing to extend her hours and do whatever is needed, and I would be responsible for the worst job - that of changing his diaper - I hate that word for him. But it is what it is. I have done it before, and I think I can do it regularly. I would not like it, I do not want to do it, but I can. I think. I hope. We would still get hospice services, including a weekly visit from a nurse and an aid that would give him bed baths and I don't know what else. The staff at the Dobson House tried unsuccessfully to put a catheter in my dad. They couldn't get it in. :( They are going to try to get another piece that they are out of as of yesterday, and try again. I'm thinking that would be a good thing. He would be able to stay dry and hopefully, that would help heal that painful rash he has. And it would be less mess at home.

This care giving has been quite an undertaking, and still is. I have been reminded that I have to do what is best for my dad, and not just make a decision that is best for me. It just seems that either way, I lose. If he's away, I will continue to visit, worry, and fret. If he is here, it is more of a demand on me and my husband. He says he will support my decision either way. And I know I can change my mind if either doesn't work out. I just wish there was a manual on this.

Update

My dad is now in a Hospice Center about 5 miles away. He had a real bad day on Sunday and I called the Hospice nurse. She was at our home within an hour, and after seeing him, recommended the center. He can only be there for a maximum of 2 weeks. She told me that she didn't know if he would be with us for that long. Of course, I agreed with her recommendation and he was taken there Sunday afternoon.

He is on oxygen, receiving breathing treatments, and taking diuretics for the swelling. Yesterday, from what I could tell, he was up for about 2 1/2 hours before he went back to sleep about 12:30 pm. I was there for breakfast and lunch, which he ate. I was told he ate about a 1/3 of his dinner. We went back over about 6 pm and he was already asleep for the night.

The doctor, nurse, social worker, medical student, physician's assistant and I were all in his room together after breakfast. After their assessment, it was said he was in respiratory distress possibly due to congestive heart failure - although his heart is beating regularly. Go figure. Tom and I have said that in order for him to come back to our home, he has to be able to be more mobile and we have to be able to get him up from a chair/bed - just one of us. For now, it takes 3 of them at the center to get him up. So the goal is to do that - get him more mobile - meaning getting him to be able to walk without so much distress. We're hoping that by getting rid of some of the fluid he is retaining, it will help his breathing and that will help with his mobility.

So in the meantime, we're taking it a day at a time. Our house is pretty quiet and it seems weird that he isn't here. I've had 2 really good night's sleep. I didn't work yesterday, but am going back to that routine today. We are going to have to start working on discharge planning because before we know it, the 2 weeks will be up. I know there are lots of things to think about, but for the past two days, I haven't done that. Maybe just a bit, but I keep putting it off. I guess I will have to start that process. My dad appears to be pretty comfortable. He is not getting up to use the bathroom anymore, so the stress on his system for that activity is gone. He knows he is not at my house (or somewhere) because he told me that he would "stay here awhile and get strong". He cordially spoke to the chaplain at the center and told him he was active at the parish down the road, Saint Roc's church (in Michigan). The chaplain is going to arrange for the priest from my parish to visit him and give him the sacrament of the sick. My dad told him "that would be lovely".

I would have had a real hard time making it through this past weekend without Hospice, my hubby, my friends Jean (who dashed over when called), Roxanne (who brought over a motorized lazy boy type chair that my dad used once), and Laura (my rock of a friend). Thanks!

A tentative sigh of relief

Thursday was a horrible day for me. I actually said out loud to my husband, "I don't think I can do this anymore." It choked me up saying it. And I felt horrible for saying it too.

I went to my support group on Thursday night (great timing!). I felt a little better when I left, after crying again and rambling on to them all. The facilitator of the group, Renee, said to me that she guaranteed that after Hospice came to my home, I would feel better because we would have a plan. Smart Renee.

Hospice came yesterday, and they came today too. I feel like I am not alone anymore in dealing with all the medical stuff. My dad is now off the service of his regular doctor, and under the care of the hospice doctor. I will not have to take him to the doctor anymore. A phone call is all it takes for help to call me or come knocking on my door. After their visit yesterday, the plan was for the nurse to come on Monday and start it all. But my dad had a really bad evening yesterday, and both Tom and I said we had never heard him breathe like that before. It was awful. So this morning, I called and left a message for the nurse to call me. She called within 10 minutes. I couldn't believe it. And within a few hours, another nurse came to our house. My dad's respiratory status continues to deteriorate and his breathing is very labored. So... within a few hours, the door bell rang. The medicine was delivered that would be used in a nebulizer. (It does the same thing as an inhaler, but my dad won't have to coordinate his breathing with medicine puffing into his system.) Then, the nebulizer and the oxygen were delivered. The guy spent about 30 minutes with Tom and me, and showed us how to use them both.

So tonight, my dad had 2 breathing treatments, and about 3 hours worth of oxygen before he went to bed. It was nice to have him up with us this evening, and he was laughing throughout the show we were watching. I feel like a novice with this equipment, but I know I will get better at it, and will figure out when the best time is for using it, frequency, and all that stuff. My dad was able to use his walker (a regular thing the past 2 days) and walk from the living room to his bedroom, with five 15 second breaks. It was slow, but he made it.

And.........I figured something out that really helped me. I have a very very very very very very hard time with the odor. You know the odor. That odor that goes along with cleaning up diarrhea and all. Well, I won't get into how I reached this discovery, but I do know that if I put gobs of Vick's Vapor Rub up my nose, I can clean it up without gagging (or more, which I've done). It may not be too glamorous looking, but it works!

So for now, I feel better equipped to handle this. I will take it a day at a time, know that I have options, if needed, and continue to be grateful that my dad is with us.

Hospice is coming

Hospice will be coming on Friday to meet my dad and talk with me. We'll see what they have to offer to make this easier, if that is at all possible. I ended up calling Hospice of the Valley myself. Two days and 3 phone calls later, I still haven't gotten a call back from the doctor's office about this. Kind of disappointed in their follow up...

My dad is getting quieter and quieter. He talks more in his sleep than he does when he is awake. He still perks up when I ramble on about something, but never comments about anything. He's needing more and more help...getting up from a chair, walking, bathroom, dressing. Except for maybe a total of 3 hours during the day, he is sleeping. He is letting his caregiver help him in the bathroom, and even with showers. Tom is able to do things for him and he is always willing to accept that help. With me, especially in the bathroom, he is a bit more hesitant about accepting that help. Usually, he yells at me. But I get past that and do whatever it is I need to do anyway. ( The other day I thanked him for letting me boss him around. He grunted. Then I told him "paybacks are hell, huh?" He laughed.) He's not getting as much nutrition, either because he is sleeping more, doesn't eat as much, or throws it up. I don't know what that is all about. I'm going to change the way he gets his medicine, maybe not all at the same time. Perhaps that will help him with the gagging and vomiting.

Poor guy. I just feel so bad for him having to go through all this stuff. He would be miserable if he knew. Perhaps that's the one good thing about Alzheimer's? Or is it? We just don't know.

Changes

I'm having a hard time facing the facts. I keep expecting my dad to get back to himself. The "himself" of a few months ago. The "himself" of confusing thoughts, poor memory, a little agitation, and some incontinence. The "himself" who enjoyed my cooking, played some cards and boardgames, watched tv, yelled at the football games, and laughed whole heartedly at things on tv or things I would say to him. I would welcome him back, but memory difficulties continue to worsen. Awareness of his body is declining. I believe he has all the symptoms up to and including stage #6 in the stages of Alzheimer's Disease. #7 symptoms are emerging. http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp#stage6

But even worse, if anything can be worse, is that of his physical decline. His breathing continues to be labored and he is very swollen. Walking a distance of 20 feet, using the bathroom, or taking a shower make him so tired that he can't keep his eyes open. It is a heart breaking thing for me to see. He got up about 10 today and had a big breakfast (banana/grapes, 3 eggs, ham, fried potatoes, english muffin). By the time he was finished with that at 11, it was back to bed. He got up about 3 and had a 1/2 sandwich and chips, let me cut his hair and shave him, and that wore him out. He needed to take a shower, or at least use the bathroom, but he refused to and went back to bed. I went in and woke him at 7. I scared the bejeebers out of him, despite my attempt not to do that. He asked where his mom was. I told him she was out, but Tom and I were going to help get him cleaned up. He seemed to accept that response. He had some trouble finding words, or maybe it is "labeling objects", and kept asking for his undershirt over and over and over. I figured out it was his bathrobe he wanted. Anyway, he let Tom ( not me) help him up and get him to the bathroom and into the shower to sit on the seat in there. We put in a hand held shower head this evening, and he used that, and allowed me to help him scrub (and tell him where to scrub). He let Tom help him to dry off and get on his underwear. He walked back to his room and was fast asleep after a quick snack and drink (served to him in bed). He is having to rely on more help with dressing and hygiene. He is very weak, and even fell today when going back to bed after lunch. Thank goodness my friend Laura had just dropped by! I needed her help and support. (thanks, Laura!)

So I am beginning to face the fact that we just might need Hospice. I don't think he is in pain. I think he is tired. I think he is tired of being tired. And I think that having some more help, although I don't know what they will do at this point, would be good. I'm hoping to make it through the weekend without too much guilt that I haven't done this earlier. But it is a real hard thing to do. And I will never stop hoping that tomorrow will be a better day than today. Each and every day I will will never stop hoping that. Like I said, facing the truth is really hard. But these changes the past few weeks...they are heartbreaking.

It's in His hands

I'm ready to blog about it. The appointment with my dad's doctor (without my dad) on Thursday evening didn't tell me what to do. It did give me choices. And following that, a few days of a swirling head, weighing pros/cons, talking, thinking, and praying. It's either pursue medical treatments, or let nature take its course. Or as the doctor put it, "poop or get off the pot!" I didn't take offense at that statement. I already knew that was the deal. Committing to one of the choices is a difficult thing.

I want my dad to be comfortable. He doesn't seem to be in any pain, just complains that he is tired. (I assume he can feel pain by the "!!#!^*!!" he says when he hits his leg against something.) Of course, I want him to be with us for as long as he can. Pursuing the medical route may help with that, but at what cost to him? Doctor appointments, blood work, medications with side effects (the one the doctor spoke of, if needed, causes diarrhea) and whatever else...I have to think of how he will handle these things. Will they be stressful? Tiring? Confusing? Worth the time? If he were at home with his wife, what would he be doing? Going to the doctor? No, he'd be sleeping. And if he wasn't with her, and I doubt that he would be, he would be in a nursing home. He would not be getting back rubs, kisses, hugs, laughs, and the kind of care that we are able to give him. (My wise mother in law told me this, and I know it is true.) We have made a lot of adaptations in our home to help my dad. He has a caregiver when we are gone that dotes on him. He never sleeps in wet sheets or blankets, and I make him change his clothes when needed (even when he complains. And of course afterwards, he says, thank you!) He has a cane, walker, bath seat, elevated toilet seat and grab bars. We may not always use them, but they are here when we need them. We keep a watchful eye for messes...quickly cleaning them up to prevent any kind of hazard for him, or us. He has a variety of foods and drinks, socialization during meals and other times, and an accommodating staff. :) I think we are all aware of his difficulties, and try to think of things to help him be comfortable. I'm not going to list them all, but there are lots.

The doctor told me that either way was OK...and he gave me a hug. I thought I had my stoic face on, but obviously I didn't. Anyway, he mentioned that hospice might be appropriate at this time. He also told me that it is typically used when the patient has 6 months or so to live. As a medical professional, I do know that this is not always the case, but I didn't argue. And I don't think that hospice is needed right now. Not at all. I have gone through hospice care with loved ones before, and it is not time for that. When it is needed, I don't have any objections at all to their services...I will probably welcome it.

After almost 3 weeks of sleeping most of the day, my dad had a great day yesterday. He had one 45 minute nap, and another 20 minute nap right before dinner. He had three meals yesterday, and ate every bit that was given to him. He played Jenga with Saturday's caregiver, Lisa. He played solitaire by himself. He watched some TV, and even flipped through magazines. He went to bed at 8 pm, after getting up at 7. And this morning, I was awakened by the shower going in the hall bathroom. He was in there cleaning up, while I followed suit by cleaning his room. He ate a good breakfast and stayed up til about 10. He's still napping now.

So I am going to enjoy each day with my dad. We will make him comfy, show him our love, help when we can, and be grateful.

body over mind

The Alzheimer's part of the equation seems to have taken a back seat to the physical condition in my dad's life. He continues to sleep a lot. The most he has been able to stay up is 3 hours. Today he played some solitaire with his caregiver, and with me, for about an hour. Yesterday evening, he and I played for awhile after dinner. But all of a sudden, he says he is tired. Off he goes to lay down, on a chair, couch or bed. Within a minute, he is sleeping. Naps linger on for hours and hours. He was served breakfast in bed over the weekend. He just couldn't get up. When he sleeps, I keep him hydrated by taking a drink to him and use a straw to cue his mouth. He briefly awakens and drinks it. Than, he's back asleep.

He's not eating even half of his usual meals/snacks. Sometimes, he misses meals completely because he is sleeping. Attempts to awaken him to eat bring a whining, pleading voice to "let me sleep, I'm so tired".

He continues to be short of breath with any amount of physical activity. I'm still assisting him to dress and undress. He is letting me into the bathroom without too much protesting, although he sometimes sounds just like my dad when he yells through the door, "don't come in!" He wins with that for awhile because, after all, it's my dad. His legs, feet, tummy continue to be swollen and very hard to the touch. His feet won't fit in his shoes anymore. He doesn't complain, except to say he is tired.

It's a rough time right now. I made an appointment to see my dad's doctor on Thursday evening to talk about his care. No way am I taking my dad anywhere, unless I absolutely have to do that. I'm hoping I will get some questions answered, some clarity or confirmation of my thoughts, and information that will help me care for my dad and plan.

A tired dad

16 hours of sleep last night. Up at 12:30 pm today. Bathroom, shower, brunch, nap right after that. Up once about 7 pm this evening to use the bathroom. Still sleeping...and it's 9:45 pm.

That says it all to me. My dad's body is tired. Really tired. As I type this, I hear him in the room next to me. He is talking. I can't really make out what he is saying, but he is talking away. I think he is dreaming a lot, and sometimes when he does get up, the dream is still there and it is real to him. Like when he was going swimming the other morning - or when we had the fire in the house - or when he's going golfing - and like this evening when he called my husband, dad. I would love to know his dreams. Is he remembering things? Is he visiting with old friends and family? Is he just out having a good time?

He's not talking any more. He's crying.
Such a terrible disease. What a way for him to spend this day. I think of all the other ways he could be spending his time. It could be a lot worse, I know. But somehow, that doesn't seem to be helping this sadness I have for him at this moment. I just hate this disease.

Hallmark says it all.

I received a card from my very dear friend, Pam. It has a verse that I couldn't resist sharing.

Watching a parent change can be difficult.
Where once stood a tower of strength, there is now a person who needs your care.
Those who taught you how to make it on your own can no longer do it all for themselves.
Helping a parent navigate these changes can take its toll,
So please be sure to take the time to take care of yourself, too.

So sweet. So true. I'll try. Yes, tears.
thanks, Pam!

erase that

It wasn't a terrible day, but it wasn't a lovely day. My dad slept a lot today. When he did get up, he walked to the back door in his undies and started to open the door. I said, "don't you want your robe on? It's kind of chilly out there." He said, "oh no, I'm going swimming." That was the start of the day.

I felt kind of bossy today, even though Pat was here. In my way, I demanded things of him. I made him take a shower. I did about 90% of his dressing for him. Several times I made him put on underwear, buffering my bossiness with an "I love you, Dad." Like I said, he slept a lot. His breathing...wow, he sure gets tired. And both of his legs are swollen now. I did get hold of the doctor's office today and asked for the results of his ultrasound. "Everything is OK, nothing showed up." So what is going on? Do I just accept that I have done what I needed to do in order to rule out anything really serious that could be treated? Do I just accept that my dad is 87, and things are just starting to fail? First the mind, now the body. ugh!

feeling a little overwhelmed

If I ever doubted my need for Saturday help, it is gone. This was the first weekend in a long time that I didn't have a caregiver for my dad on Saturday. So Friday, Saturday, and Sunday were mine. I could write about how many times I washed sheets, cleaned the bathroom, got my dad to shower, did meals, cleaned up messes...but I won't. I could talk about questioning my skill level at this, wondering how long I will be able to keep this up, the loneliness/isolation I am feeling, or how far behind I am with everything...but I won't. Let's just say that Pat can't get here early enough for me today. It's MLK day and I have the day off, but I'll still be working in my office. But I won't have to get up to do meals, clean, wash, etc. And I may even go somewhere, in the car, away from the house. Imagine that. It's going to be a lovely day!

3 of 27

Out of 27 hours, my dad was awake a mere 3 hours today. He went to bed at 7 last night and got up at 8 am. By 9, he was back sleeping until 2 pm when I woke him for lunch. By 3, he was sleeping again until 8, when I woke him for dinner. At 9 pm, he told me, "I'm tired". So off he went back to bed for the night. It is safe to say that he was really tired today, but why? His breathing was very labored today, especially after a trip to the bathroom or walking down the hall. While he was sleeping, his breathing was very loud, and the exhale sounded like gurgling. He has been talking a lot in his sleep, laughing out loud, and howling. What is this????

I'm disappointed that I don't have any results from his ultrasounds of a week ago. No news is good news? I called the doctor's office twice this week and they said the doctor hadn't "signed off" on them yet, meaning he hasn't read them yet??? I asked if he would please call with results, nothing or something, and they agreed.

His belly is very swollen. I never remember seeing my dad with a belly, ever. But without his shirt this evening, in those fashionable elastic waisted pants, it was clear that the swelling? is not down. (looks like he's about 7 months pregnant) I put my hand on his tummy and it was rock hard. His heart? That's my guess, but who am I to say that. Just a hunch.

And so I wait for results and wonder what I will do with them? I just want to know.

hey - any molars in there?

I still haven't gotten the results of my dad's ultrasound yet, but his swelling seems to be going down. Or am I just getting used to it? He's very tired. We just finished eating and his eyes were drooping. He's still up, but I bet it won't be for too long. But, you never know. He may get a second wind. He did a real good job while getting the ultrasound. We were there for almost 2 hours and he was great about it. The technician asked him how he became so patient (which is pretty funny saying this about my "other" dad - "patient? ha!). Anyway, he pointed to me and said, "ask Harriet" (his wife), "no, ask Helen" (my mom), then it was "ask her!" So I guess I am not always who I think I am.

Going back to the fact that we just finished eating...it does take my dad a long time to eat. A 30-45 minute dinner time is pretty typical. Tonight we had chicken, noodles, and broccoli. I was done way before he was, so I started watching. For each piece of chicken, there were at least 30 chews, and once it was 51. And he always picked up one noodle at a time, 15-25 chews a piece. No wonder it takes so long. I got to thinking, it's been a long time since I looked in my dad's mouth (if ever). I wonder if he doesn't have any molars left?

Aricept's side effects are coming into play. Diarrhea. yuck. But it does seem to be tapering off, which is a good thing. The other day, I ordered some reusable washable/dryable barrier pads, typically used in beds. They are a good size, 34"x36". I put one on a chair that my dad sits in (although a little late for this). And I have 2 more to place. We'll see how they work, and get more if they do. It's always something.

The Aricept seems to be getting my dad back to himself, or the self of today. There haven't been any extreme thoughts or behaviors in about 5 days. Yeah!

good stuff!

Day by day, this week has been a blessing! We've had 2 days now when my dad seems back to his "normal" self. He's no longer doing a fire drill with us. He hasn't gotten dressed to go to work, home, or golf like he had been doing. He is less agitated, and more content. whew. My new mantra...I will never take my dad off Aricept again! I'll take this "normal" any day!

But now...he is having some physical problems. He had an abdominal and leg ultra sound today. He's been swelling the last month or so...and he is sleeping A LOT. I even had to go and get him some new pants this week because there is a 3 inch gap between the fastener at the waist. At first, I thought he was having problems with the fastener itself. But now I know...his tummy is swollen. I went and got him some of those groovy elastic waisted pants. He is quite styling now. :) Now we just have to wait to find out the results of the test - and see if they tell us anything or not. The doctor gave him a water pill, hoping to get rid of some of the fluid. I haven't filled it yet, and I don't know if I will. I dread more trip/misses to the bathroom. But if I have to, I will....and I'll be dragging my feet too.

87 and counting

January 5th was my dad's 87th birthday.

Happy Birthday, Dad!

He loves his chocolate cake!

Diabetes Shmiabetes!

His Reality

I am writing this entry to emphasize the power of this Alzheimer's Disease. Although you may giggle at the incident, it was so real to my dad. I saw such fear in his eyes, his actions, and his words. There was nothing I could do to calm him but to enter his world for a short time.

At 1:30 am this morning, my bedroom door was flung open, hard enough for the handle to hit the wall. I sat up, and my dad was standing at the entry all dressed. In his booming, deep voice he yelled, "Get up! There's a fire! Hurry! Come here!" Of course, I leaped out of bed and ran to him. He yelled in my face, "Fire!" He was just frantic. He went to every door and opened them, yelling inside, "Get out! Fire!" "Get the boy!" "Fire!"

I followed him down the hall into the living room/family room area. Both the front and back doors were wide open letting in the cool night air. "We have to go! We have to go see what's outside". I said, "but it's so cold out". He said, "I don't care how damn cold it is". So about 1:35 am, I went outside with my dad, dressed in my nightgown and flip flops, and we walked up and down the street. He was still breathing hard, quick short breaths, and looking up and down the street. His eyes - so scared. I hooked my arm through his, and tried to slow the pace. After about 15 minutes, we were in front of our house, and I guided him inside. He sat at the table, "I'm so tired". But he wouldn't go back to bed. I got out a game, and we silently played tic tac toe (a game that has a board and plastic X and O) Initially, he was just tossing the O on the board, one right after the other. He gradually calmed, his breathing slowed, and he began to pay attention to the game. When he started to consistently beat me, it was about 3 am. Somehow, I got him to go sit in the lazy boy and he fell asleep in about 5 minutes. I locked the screen door in addition to the wooden door. Then I laid on the couch. No way was I leaving him! Last I looked at the clock it was 4:30, and he got up about 6:30. This time, he told me he had to get ready for work. So he went and changed his clothes, put on his good shoes, and I made him coffee and a light breakfast. As soon as he was done, he put on his sweater and said he was leaving for the office. I reminded him that he had a vacation day today. "Oh yea". So he took off his shoes and went to lay down in his bed. He is still sleeping now and it is past 1 pm. He says he is too tired to get up, but I'll keep trying.

What more can I say? It was a bad night for him. I learned early on that A.D. patients operate out of fear, and this is a clear example. I had to enter his world. It was his reality. Trying to convince him otherwise is a waste of time, and would only bring out his stubborn, belligerent side that would protect himself. I really can't blame him for that. We would all do the same thing in our reality.

I HATE ALZHEIMER'S DISEASE!!!

Back on Aricept

Holiday preparations have been completed. Christmas has come and gone. A year has passed, a new year is here. My dad has no idea. He did not get the connection between the Rose Bowl and New Year's Day. He was shocked when I said, January 1st, 2009. Did I really expect anything differently? I guess I just continue to hope.

During the past few months, there have been a lot of changes in my dad. He is quieter. He is more confused. He has been agitated, restless, and showing changes in his sleep patterns. At times, he has been unable to find the bathroom, his bedroom, his clothes, or the garbage can. He has fallen, and the soreness? from that, or the gradual weakness from not doing much, has impaired his ability to get up from the couch, chair, and the toilet. I have noticed that he becomes confused when new types of foods are given to him. He put some butter on his salad the other day. He used a fork and knife to eat a taco. Although seeming content, he has, on several occasions, said he was going home and wandered around the house making sure he "had all his things". He has come up with some interesting things that I have never heard before. The other day, he told me that he was arrested the previous night and spent the night in jail. He kept calling himself a "jailbird". And I want to know who Lawrence is. I have never heard of him, but apparently, Lawrence is "his" son. I have been called honey, dear, Harriet, Gini (his sister), and have been thought to be his wife, whoever that may be. We had another "threesome" this past month, and I have been awakened by my dad so he could "chase" me.

So, the decision has been made and he is back on Aricept. I'm hoping that it has been the lack of that, and not the disease's progression, that has caused daily incidences of increased dementia.

Happy New Year to all!