Every day is a new day

These are the words I tell myself when thinking of my 90 year old mother who is living in a Memory Care place here in Corvallis Oregon. Each day is different as is her mood and memory.

Every time I stop to see her she cries out with relief. Some times she says to everyone around her "I haven't seen my daughter in MONTHS!" even though I'd been by the day before. Oh well. At least she knows who I am.
Some day she may not know that I am her daughter, but I hope that she will at least know that I am someone who loves her and is safe.

My mother has Alzheimers. She can barely walk due to her weight gain and fear of falling. As a result she spends her days in a wheelchair. It takes two people to assist her in and out of the chair, and much of that involves assuring her she will not fall. It is hard to watch her slowly lose so much of the self that is Elizabeth Jean.

My mother's name is Elizabeth Jean but she has changed it over the years from:
Betty Jean - when she was a young girl
Betty - in college and married to my dad
Elizabeth - changed to that when in her 60's
Liz - I can't remember when she decided she wanted to be called Liz - maybe in her early 80s?

Despite the name changes she still is the same woman - full of humor and a feisty self that never fails to let everyone around her knows she can still decide for herself thank you very much!  Even with her dementia, she still wants to make her own choices - and I applaud her - except when it comes to refusing the pills that help with her Congestive Heart failure and depression. The staff has been marvelous at figuring out how to get her medications into her in a way that she makes the decision!

My father passed away in March of 2012 in his bed with mom holding his hand. Some times she asks where he is and when I tell her that he died while she was holding his hand she always remembers with almost a sense of relief. It gives her great comfort that she was there and it was such a quiet peaceful passing. As far as I know she has not cried for him since then.

Alzheimers is a truly terrible disease - not only for what it robs the person whose brain is affected, but also the people who know and love them. We have to stand back and watch while they forget the things that happened yesterday or this morning - but not years ago. We watch as they lose their ability to complete the activities of daily living (ADLs) but what is most hard is watching them lose that important sense of self and who they knew themselves to be.
For instance my mother was a musician and worked hard all her life to be counted and respected as such. I don't think she really thought she had value other than through her music.  She used to tell me that no one cared that she was the choir director and a good musician. It made her so sad.
Now she does not even remember being a choir director.
She has forgotten those things that made her unhappy - which is good.
She has forgotten those things that made her happy - which is not so good.

I love my mom and am grateful every day that she is here so I can be with her.  The role or Caregiver is a thankless job, but I have learned so much about love, patience, kindness, humor, anger, depression, fatigue, and above all love.
stay tuned for more stories to come about the world of dementia from this one person's point of view.

Mom's 90th birthday celebration with grandson Joe - August 2014.

Endurance

Being a caregiver is not for the feint of heart, nor for those who have a hard heart.
To be a caregiver to my parents is a lot like when I first became a parent. Before Will came home I thought that I would have a baby and just go on with my life. I had NO idea, and no one could adequately prepare me for how my life was going to change. No one knows.
It is the same with moving home to be with my parents.

I.had.no.idea.at.ALL. 

I didn't know how heartbreaking it would be to watch my dad have to be assisted to get in and out of his chair, or watch him shuffle, bent over while slowly make his way across the room or around their apartment. I didn't realize that when I see him asleep at the table that I would find myself wanting to do ANYTHING it took to wake him up so he would eat. The times that he wakes up, is alert and talking is such a relief and a joy. Never mind that half the time he can hardly put a sentence together that makes sense, and other times he is wry and funny.  He is my dad and I love him.

There are days when I think I just can't do this any more, it is too hard watching my dad slowly fade away into a shell of himself. But this is something I really don't want to miss out on. This learning how to love in a whole new way.

When we were kids growing up I was afraid of his temper and when he would lash out in frustration - but that changed and I learned how to push back when he would be mean and thoughtless. What I learned was that if I challenged him and said I didn't like the way he talked to me or my sons - he always backed down and apologized. 

So we all grow up - no matter how old we become.

September 2008

One of the things I feel sad about is that my sons are not getting to spend time with dad before he is gone. Then again, they get to remember Grandad the way he was when they could sit and talk about stuff like the marines or current events, or how great the Huckabee show is on Sunday night TV.

When I think of my dad now, it is of him sleeping in his chair with his face in his hand, or shuffling down the hall with his walker.

I've seen the faces of some of the other residents when I sit with dad or help him get around. They usually give me smiles of encouragement. They can see his struggle and mine, as I try to help him keep his dignity as long as possible.

This is a long haul ride, watching him slowly lose his balance and his memory, and I wrote earlier, it take heart to keep supporting him. My brother Gale helps so much with keeping Dad's dignity intact. He comes to shave dad almost every day and helps him get up and walking about. I think that Dad will eventually forget who the rest of us are, but he will remember Gale, and Gale's tenderness and loyalty far longer than anyone else. Lucky Gale.

At some point the dementia/Alzheimers will erase his memory completely, but for now, he is still grateful for every day and every person who cares for him. I'm trying to learn from him the same kind of thankfulness.
And so I'm the lucky one now.

2009

I'll write about my mother some other time. But not now.

2011 a new year

The last time I posted was a year ago. So much happened in 2010 that I don't know exactly where to start, but I will attempt to just list things, then maybe I'll be better about this year. When I started this blog I thought it would be a way to keep my family members up to date on my parents. So much for that idea. :-)

2010: Spent a GREAT amount of money on caregivers coming to the house to be with mom and dad while I was at work.  It was expensive, but worth it. However I still had to get over my shock at having to help my dad in the bathroom and shower. Actually we both had to get over our unease. And we did. Dad is a trooper.
Then my wonderful brother announced that he was leaving the priesthood after 35 years. WOW. The following Sunday I took my parents to Portland for his last mass. It was a beautiful, moving, sad, bittersweet, happy day for all. My dad loved every minute of it. End of April saw us all moving them into the Corvallis Caring Place (Assisted Living) where they are now.
Dad has been up and down with our struggle to keep him hydrated.  He was in and out of the hospital last summer and even spent 5 weeks at a rehab place. That was a mistake. Dehydration is our biggest challenge with him. But when he gets enough fluids, he has more energy and is awake and will walk MUCH better.  Why can't the doctors see this? Why can't I see it? I was so afraid he'd had a stroke, when he just needed to be fed and watered. sigh.
Mom has struggled with the Caring Place. I don't think it is quite what she expected. Her memory went downhill also as has her spirits. They get pretty good care there, but there is nothing for her bitterness and disappointment with life.
When mom and dad moved out I stayed here in the house and spent the rest of the year trying to make it my home, but still keep much of mom and dad's presence. So far I think I've succeeded.
Thanks to my dear friend Cheryl, I've learned how to lay laminate flooring and now two bedrooms that were filled with stained carpet are now clean floors.
Tom and Tia were married in November and it was the first time in years that all my brothers and sisters were together.

My brother Bruce passed away 3 years ago, but his widow, my sister in law was with us. I'm so very glad she came! 

The Farley bunch November 2010

The Farley bunch plus!

The Farley bunch with new addition (and Charlie!)

The year ended with me flat on the couch sick for a whole week. But with that I got to watch the complete first season of Modern Family and Glee.
In the middle of all of this, my youngest son Jake graduated from St. Olaf (I got to be there by webcast) and my oldest son Will spent the summer in England. I miss them both and am so grateful that they are my sons.
I started working mostly from home in December and found it is okay. A little isolating, but I look out the back window at a bird feeder and watched winter go by.
That about sums up 2010. Lots of changes both good and sad, but always always interesting...
Some kind of life eh?

breaking buildings and breaking hearts...

I'm on a self-prescribed retreat at the Oregon coast. I am in heaven.
I left work early and got here by 4pm. The weather is very stormy and grey. ahhh the Oregon coast in January.
I'm staying at a hotel located directly across the street from the beach house my aunt owned for so many years, until she passed away and it somehow got away from the family.
I went for a short walk on the beach when I got here. The weather was grey and rainy with rain blowing in my face. The beach still held so many memories of the summer I spent here when I was 13 years old.
I don't have to keep to a schedule, or talk to anyone if I prefer, except I'm watching the news on CNN and MSNBC to see all coverage on the devasting earthquake in Haiti. I'm grateful to be here in the quiet and on my own, yet my heart breaks for the people in Haiti.
I hope to spend the weekend re-acquainting myself with my Canon 40D.  It has been so long since I even picked it up that I can hardly remember how to use it.
I need to get back to my art. still I took my point and shoot out on the beach and played around. The place where I'm staying is on the left.

Preparing for a new year

And new challenges.
2009 was filled with:
Uterine cancer - full abdominal hysterectomy
Chron's disease resurfacing
Tech writing job becoming more hectic and challenging
Dad falling and cracking some ribs - found out it was a bad UTI. His Parkinson's is slowly eroding his physical abilities (loss of balance, incontinence, falling) and his mental capabilites (forgets where he is, can't find the kitchen, forgets to eat with utensils, freaks out when he can't see mom for 10 minutes, forgets where the bedroom is, can't pee into the toilet correctly) and so on.....
Mom struggling with depression and control issues - diagnosed with Congestive heart failure in October and has given up on life in some ways. Had to take her off her antidepressant due to the heart meds, and now she can't remember anything and is VERY depressed. Her short term memory is shorter than ever.
She obsesses about stuff and moves REALLY slow.
But I still love them - dad has the most wonderful sense of humor still, and mom is still very interested in the world and wants to know what is going on.
And they both tell me how grateful they are that I'm here. It helps when they say 'thank you' - then I know they are still here.
Our two caregivers have saved my life and I'm sooo grateful to them.
tomorrow I list out my resolutions - maybe if they are on paper (okay, the web) I will be forced to follow them, or at least try. So 2010 - here I/we come!
A few of my favorite photos from 2009.

Losing words

I think one of the most difficult part of being with my parents age is watching them struggle to do now what was normal a year ago. Mom has a hard time finding the words in a sentence and it upsets her. Yesterday she wanted to tell me something and couldn't remember her brother's name! Now that is scary. But at least she could say to me as she was searching, "WHAT is my brother's name!?" I felt awful for her.
About 2 weeks ago she ran out of Aricept. When she submitted the prescription to the pharmacy she was told that the new insurance company would not approve a renewal. Now she needs to get a new prescription from her doctor (and a new diagnosis as well) in order to get a new prescription. Of course the doctor was out of the office all this time and no one could do anything.
So her memory is falling apart bit by bit. I hope that it will start to come back when she can start taking it again.
She is beginning to tell me things a second time. There is no problem with that, except that I'm usually there when it happened, so I know already. I'm learning to just respond as though it was the first time I heard it.
Back to work today - I'm looking forward to being out of the house and thinking of something else. It sounds selfish I know, but right now it is so needed for my mental health!

Her depresssion

My mother is depressed, and has been for the past couple of days. I can tell by her lack of energy to cook dinner when I get home from work. Also she frets constantly about all the 'projects' she is facing and can't seem to get done. Which is kind of hard to listen to as she is retired and usually sitting in front of the tv when I get home.

However she is 84 years old and the primary caregiver for my dad who is 85 and has Parkinson's disease. Her life has been turned upside down over the past few years and now all she sees as her life is watching over my father.

Dad loves mom dearly, but they have 61 years of habits and built-in responses to each in their daily dance.
But she is lost I think and needs some kind of focus to give her life meaning. Maybe that is why she needs to be 'busy' and occupied with worrying about stuff.

I love them both and am very glad I'm here, don't get me wrong. But sometimes it is so hard to see my father fumble when trying to button his sweater, or take three tries to push himself out of the chair.
This aging business can really suck I think.
More tomorrow.