Sunday, January 12, 2014

Love Steps Up: A Personal View of Alzheimer's

When life and love get hard, we all have a choice: step up or step away. I am so grateful that my mom has chosen to step up. For the past several years she has been caring for my Dad who has Alzheimer's . Well in reality, she has been caring for my Dad way before then, isn't that what wives do?  I know that this is not what she anticipated in a fairy tale love story, and even before then I don't know that I would describe my parent's marriage as perfect. Is there really such a thing? And in marriage, unless you are one of the members, I don't think you can judge if it is "perfect" or even "good" or not. Feelings of the heart, and individuals hopes and desires are not always easily seen on the surface of day to day living.  So maybe it has been perfect.

The above picture was taken a few months ago as I visited my parents. My mom was shaving my dad. I asked her if she felt comfortable with me sharing this picture and some of our Alzheimer's story and she agreed.  I was hesitant to write this. My dad has always been a hardworking man and it is sad to see him in the state he is now. I didn't want to disrespect him by sharing how this disease has affected him.  But, it is a story that must be shared, in hopes of having others understand perhaps how to help out and love those like my mom and dad. ( or even my mom and dad if readers know them)

The Beginning
My Grandma Spriggs, my dad's mom, suffered from dementia. She lived with us for some of my teenage years until she was placed in a nursing home. I remember changing her diaper and her doing things like pouring orange juice into the milk and stories that she felt were true that were scary imaginations. My mom cared for my grandma a lot. It was hard for her and she will say at that time she thought some of the things my grandma did was simply to spite her.  My grandma suffered with dementia for several years, at that time I don't think it was given the Alzheimer's name, but it may have been.  When my grandma passed on, I'm sure my dad may have been a little sad, but probably not a lot. I recall him saying that he had already said good bye to her years before.
So, my dad, having seen his mom in such a state, never wanted to be in a similar position.  As he started to exhibit some of the initial signs of Alzheimer's it was scary to him. He didn't want to become like that.  That is a tough place to be in.  You are still cognitive enough to know that things aren't right, but you can't fix them or change them in the way you want.  It's like you see your nightmare rushing towards you, but you can't stop it. Things become more and more confusing. At the beginning ( and even later, too, I think) as he was aware that he was losing his cognitive skills,-there is a certain amount of faking. He may have run into someone in the store and knew he should have known them and was maybe able to muddle through a conversation with them, all the time wondering who they were and what his connection to them was.

Progression
For awhile my dad was able to do the majority of the things that he had been doing. He worked some and still drove to neighborhood places. Eventually my dad wasn't able to continue either tasks. He wasn't able to follow through on his job demands and although it was hard, slowly my mom decided that it was no longer safe for him or others around him to drive.  I think that was hard for my mom- how do you take away the simple pleasure of driving privileges from your husband ? He was still able to do many other things . 

For my mom this was a transition period.  Thankfully she had always been involved in family finances, but now she found herself having to make decisions that before her and dad would have made together. He was no longer able to understand the complexities of daily decisions and my mom, as she was losing, in part, the relationship she had had with my dad, and I'm sure that is a sad place to be, she was also having to take on more and more responsibilities.

Today, my dad needs help with the most basics of things.  He needs to be told how to eat something- for example do you use your fingers or a spoon.  At times he needs directed to use the bathroom and wears a diaper for the times when he doesn't make it. He wanders off. He might think I am his sister. He will ask if his mom has passed away. 

As I have watched my mom and dad- there are some important things that I need to share.  I know that I won't do justice to all the important things that need said in this blog post. So if you want to know more- please ask me.

  • Give the caregiver love and support-  My mom's world has gotten smaller as she has taken on the role of caregiver.  A lot of people have given her advice- and I know I know how I feel when people give me advice about my relationships in areas they know nothing about! I know so many people mean well, but unless you are living in the situation- trust my mom to make the decisions that need to be made.  Understand how totally time consuming and draining this is for her.  My dad attends an adult day program 3 days a week now, and he has a "sitter" that comes into their home 2 days a week.  You may think that this has made it so much easier for my mom- and yes it helps- but consider this- there are days when he doesn't attend day care because my mom just doesn't have the energy that is required to get my dad up and moving and dressed and ready to go. There are days that my dad has escaped from day care. It is not a lock down facility. As a concerned daughter I talked to my mom about this - and thought she made a good point. She said he looks for the opportunities that he can sneak out. She said he wouldn't be happy if he was locked in, and if this is the way he goes, then that is okay. True that we could extend a lot of people's lives by locking them in somewhere- but what kind of life is that. Nights are hard, I have stayed over some last year and I think one night was pretty restful, but there were other nights when my dad was up all through the night- agitated, wanting to pack for work and there are other nights, which my mom says are the hardest- when he just cries and cries. So on top of the daily stresses, my mom also doesn't have the chance to recover at night.  My mom has helped so many people in her life- this is what I wish people would do for her.
               ** Listen to her ! Call her up, stop in and visit and let her talk, let her share her feelings with you, be her friend. She doesn't get to attend church as much and socialize as much and sometimes she just needs to know someone is there. Not to offer advice, but to be a friend.
           
              ** Bring a meal over, offer to help with something at the house, help her with her garden in the spring and summer!  My mom loves her gardens! They help keep her sane! They are her respite, but also a lot of work.

  • Don't ignore my dad!- My dad is "still there", he can still joke around and although he doesn't know what is going on- he often returns to this mantra- "I've had a good life"  he will talk about the farm and the life that he has lived. I have found that at times I am even guilty of doing this- only asking my mom how he is and not talking to him when I call. I am trying to do much better, because I have found that he has happiness in moments. So those few minutes talking and connecting to someone are meaningful to him.  When I call and ask to talk to my dad my mom has to instruct him how to use the phone: "don't touch anything, put it up to your ear".  He is happy to chat- last time I talked to him he told me he had been picking rhubarb- I know it is January in Ohio and that he wasn't picking rhubarb, but it doesn't matter. I talk to him about the rhubarb I have in my freezer from the plant I got at their house.  His core beliefs come through as he says " I always think it is good if you don't have to get all of your food from the store" Self sufficiency was always important to him.  So call my mom, but then talk to my dad too!  Don't expect him to know who you are, don't expect his words to always make sense, but tell him you are glad to be able to talk to him.

I'm sure there is more to write here, but I just want to end with a thought about the picture above. My dad lives in a land of confusion. There are times when he says he wants to go home, although they are already in the home they have lived in their whole marriage. One visit he was agitated and I believe he said "I don't know where I am or who I am".  Yet through it all my mom is his safety spot. He wants to know where she is, he wants to be near her and he trusts her to take care of his needs. Love has stepped up.

And so it goes...
              




Tuesday, October 1, 2013

Cyber School- one month in

Jayna has been doing cyber school for about one month now. Which also means I've been doing cyber school for about one month now.  Truthfully, I had no idea it would be such a part of life- which is probably why I am blogging about it now- to make sense of it all.

Last year I became increasingly frustrated with how much time at school was spent watching movies and doing other things with little educational value, and Jayna complained of how much free reading time she had while she waited for others to catch up/finish work.  I did address it briefly with the teacher and principal, and I know the teacher had organized a group of kids that were ahead to do a few things differently- however telling a group of 5th graders to come up with something they wanted to learn and do it- just didn't provide enough structure or guidance- or lead to a lasting educational benefit.  I must say that when I mentioned to the superintendent that we were looking elsewhere, he said they could have her tested and she could move up for some of her classes.  Why didn't the elementary principal suggest that in the first place?

Anyhow we looked into charter schools- brick and mortar and cyber.  It basically came down to two options- a brick and mortar charter school about 40 minutes away- benefits being great after school clubs, a cool science room, and the social aspect- or Commonwealth Connections Academy-benefits of moving at own pace, clubs, electives and fieldtrips. In the end Commonwealth Connections is what we felt best about.

Jayna did some testing before the school year and tested into gifted and talented language arts and gifted and talented science.  I am amazed at the level of work that is expected throughout the classes- and I can't really tell how much of it is based on the fact that she is doing GT classes, and how much is just overall increased expectations.  I feel like she is learning so much more- but I will admit having one month in, it hasn't always been easy.  There have been occasional melt downs- when Jayna feels like the work is more involved than what she would like- and as I said, expectations are higher. There are projects that put her outside of her comfort zone- for example involving the community.
Anyhow- I'm just going to bullet some of my thoughts/her thoughts to avoid writing this all day!
  • We started out doing 8-10 hours a day to get the work accomplished, but the first week there was some extra testing needing done. Now we are anywhere from about 4-8 hours a day. We are always over the required 25 hours a week.
  • Art- Jayna has actually liked her art class so far- which is different than previously. She liked getting out her art supplies and using them. Art is not something that is natural for her, so she really liked the opportunity to use other resources ( for example looking at a clip art picture) to guide her in drawing a picture. Also she didn't get that yucky feeling you get when everyone else is so much better at art than you are- she could just enjoy the process- and I love that!
  • The classes use some great online tools and at home activities- I find it crazy that she is finding this more hands on than the school classroom was.
  • I started out letting her do everything on her own, but after a few days, realized she needed a little more guidance. So often I will scan over the lessons ahead of time and make her a list of tips and reminders for the day's courses- and she will check things off as she goes.
  • Tests! Jayna is learning what real tests are! She recently studied for a test with a 10 page study guide with an additional 44 vocab words.  She has taken 2 tests so far and both have been hard, but she has done well- but it really made her think.  I appreciate that there are more than just multiple choice tests and that well written answers are also expected
  • The social aspect- this was one of my concerns, not just the opportunity to be and interact with others, but for me a I have felt that a lot of my learning comes from listening and watching others.  So, I am glad that the classes use discussions, where students are expected to present an answer or thought to a question and also respond to others input. Field trips- there are lots of field trip options- you can go anywhere throughout the state, but I have limited our general range to within about 2 hours.  We have signed up for 4 so far- an upcoming tethered hot air balloon ride, a trip to a zoo, an outside butterfly garden, and a trip to see a Christmas play and then go to the children's museum (with a great hands on activity planned) in Pittsburgh. I hope by participating in these she will make more friends and have some awesome experiences!  I have to drive her to the field trips, but the school pays the cost for me and her up to $20 a person for activity, so most are free. Also she is allowed ( and I feel a little guilty about this)- to participate in after school at our local school- so she is participating in chorus and reading club right now.
  • Live lessons are held weekly for each class-so she can interact with the teacher and students.
  • I am her "learning coach" and I hate feeling like her grade is also my grade- and I hate that I see grades all the time.  She has all a's and b's right now, but I also want to realize that even if her grades drop some, the level of expected work is higher and she is learning.
So, I guess it seems like it's a good fit so far- I feel like I am more involved than I had expected or even want, ( checking on lessons, checking on field trips, tracking attendance...)but that's what a mom does right?  We will carry on and see where the rest of the year takes us!

And so it goes...

Tuesday, September 17, 2013

Summer and heading into Fall

So much has happened in these past few months!  Andrew has graduated from high school and is now at Pennsylvania College of Technology ( Penn College- an affiliate of Pennsylvania State) studying Web Design and Interactive media.  He has been there for just over a week and so far so good from what I hear.  Of course this mom's complaint is that I haven't heard a ton from him- and I really am trying to give him his space- but it is hard- AND he has spent a lot more time talking to his DAD!!!  Now, I  understand that he talks to his dad about things like motorcycle brakes, hooking up gaming consoles and computer questions- things his mom can't help with- but still!!!

Whitney has started cross country again and although I can't really say that she seems to enjoy running 3 miles- doing it does make her feel good and she likes her teammates- both good things.  She has also started her first job that is not babysitting.  ( Yes- everyone just keeps growing up!)  She is working at a local bed and breakfast. I am thankful that she got the job basically after I was done or close to being done working 2 jobs ( more on that later)- and closer to when she may be getting her own drivers license. ( has an appt. to take her test in a few weeks!)  It just worked out well.  She does a variety of things from helping make salads to dishes to cleaning rooms and setting up for events.  It is nice because they are only open Weds- Sunday and they seem really willing to work around her schedule- and it is close. However there are stories that the place is "haunted"...
She starts school this week- I am hoping for a good year.  She is not excited to start- and it may be harder not having her big brother around. 

Jayna has been so excited to start Commonwealth Connections Academy!  That is the online charter school she will be attending this upcoming year. She is not happy that Whitney "gets" to start school a week earlier than she does!  We worked on her schedule the other day- she generally has about 4 classes a day and after a month can sign up for clubs and electives.  She has been a bit obsessive looking at all the info.  We also added some of our own things into the schedule- volunteering at the animal shelter 2 x's a month and our own gym class ( some kind of physical activity once a week)- although she does have a gym course.  I have to say that every time I have attended one of their sessions in person, I have felt good about the choice we have made to give this a try.  Here is to hoping it is a good year too!

So this summer I ended up working two jobs- in the morning at a preschool camp, and then in the afternoon at Easter Seals working as a COTA.  It was busy! Probably not many more hours than working full time- but was crazy trying to be done with one job at 12 then changing/eating/driving to the other job and sometimes having to start there by 12:30. I had accepted the camp job before the Easter Seals job had come available- and because I could- and knew they were having difficulty with staffing levels I felt like it was best to go ahead and try both. The Easter Seals job had started out as just to cover during maternity leave.

Well-this is now a few weeks old, and I still haven't put pictures in ( I can't find them, although my hubby says they are now on the computer), so I am going to go ahead and post this as is before it is even more outdated!

And so it goes....

Just Read: "The Confession"- by John Grisham  . I liked this book a lot.  Usually when I read Grisham I come out of it feeling like I have learned something- and this was true this time as well.

Tuesday, April 2, 2013

A spring update

April 2012

It's been awhile since I did an all around update- and yet so much that has gone on.  Let's see how far I can get with this.

In November I quit my job. That was a big decision, and kind of remains a bit of a stress.  Although I still believe it was right to quit the job I had; it involved a lot of stress and bringing a lot of work home with me.  It felt like it was always hanging over my head- even on my days"off" there was always something to do. However, I really learned a lot from my position as a COTA at the IU- I really felt like it was believed you could and should make a difference in the lives of the children you were working with- and it was inspiring.  I had the opportunity to work with a lot of children with disabilities I had little experience working with.  As I took a break from going to work I had the opportunity to do some online continuing education courses- which just emphasised to me that I DO like the field- and again I learned lot- some of which I really wish I had known earlier.  For those in OT, I have to say I have been impressed with the "occupationaltherapy.com" website offerings for continuing ed.  I had always felt it was best to do continuing ed in person, but where I live there are less opportunities without driving far- anyhow I have been pleased with some of their offerings. However, after a few months not working the finances have gotten tighter than Richard and I like- so I am looking again. Being in a rural area- there is less a need for school based COTAs- unless- like my previous job you spend a lot of time travelling ( one day I would travel about 1 1/4 hours to a school another day an hour), I had an opportunity for  a rehab position, but just didn't feel good about it. I'm actually interviewing for a sub "lunch lady" position tomorrow and have interviewed to work a preschool camp this summer.  I am still keeping a look out for the perfect position, but now know that  means more than a certain tittle. I still want to keep to part-time too.

Well, I was afraid that would happen! That is the extent of my dedication to writing today- perhaps more to come on things like: getting a "new" dog, researching schools , upcoming prom and college plans.

And so it goes...

Just read "Killing Lincoln"- it was ok- the first part was hard for me to read- mostly battle depictions. It was interesting to learn a little history though.

Wednesday, January 23, 2013

Date Night

So I saw this quote on Pinterest and loved it- yes, how obvious is that " the grass is greener where  you water it"?  Sometimes we just need a good reminder!  So in that spirit, I want to water the relationship Richard and I have.  We've been married 21 years- so we have recently slipped out of the newlywed catergory.  I think our marriage and relationship is better than ever- and that means a lot.  We have not sailed through the past years without our own share of storms and bad weather.  We have been through unemployment, sickness, several moves and job changes, the ongoing raising of 3 children, and his change of religious beliefs.  Some of our beliefs are different in major ways- and some things that are really important to me, don't mean anything to him- EXCEPT because he loves me those things become important to him- at least in wanting to support me.  I've never ever had a better friend- and feel so blessed to call him my husband.

One advantage of the fact that I recently quit my job is that I've had more time to think and reflect on our marriage. And the more I think about it- and Richard- the more I just fall in love with him.  When he texts me from work, I now  have  time to respond with meaning to his messages.  I think about him throughout the day and hope things are going well for him. I feel like he can relax more when he is home because I am more relaxed, and since I haven't been working all day I don't mind if he takes time to relax while I do a few things around the house.

At the start of the New Year, Richard and I decided to take turns planning a monthly date.  This has already been so exciting.  Normal "dates" for us have recently been things like running errands together or just last minute decisions to go out to eat.  And a lot of our dates would feel like "work meetings"- where we discuss things like kids, money and other situations that as the grown ups in our family we have to deal with.  Already having the responsibility to plan dates has upped our level of planning.  I created a   pinterest board that I've titled "Keeping the romance alive", where I've accumulated date ideas, relationship ideas and things- as it says "to keep the romance alive", on my Kindle I've started a running list of possible date ideas.I planned January's date- actually giving Richard a choice of a few ideas.  We went to a sports bar and watched football and ate wings.  We don't have cable, so it was nice for Richard to watch football,and for me it was just nice doing something different.  We have hit the 40's and in less than 10 years we could be empty nesters ( people keep telling me they come back, but we're not thinking about that yet since they haven't even left) - I don't want to be one of those people you read about who don't know what to do with themselves or each without the kids around.  So I find this the perfect year to try new things, maybe things that we find out we love, plus we'll be exlporing the area we live in too.  Today I got a nice surprise e-mail from my hubby about February's date.  He sent me links to two plays and said he couldn't decide- I gave him my input and the next e-mail said he bought tickets.  I love having something fun to look forward to! I love my husband and here is to the next 21 years and lots of watering!

And so it goes...

Just read: Safe Haven by Nicholas Sparks and The Guardian by Nicholas Sparks and Total Control by David Baldacci .  I liked them all pretty well.

Sunday, October 7, 2012

Disney

So much to say about our trip to Disney, and truly a lot of the details might not be interesting to anyone else, but I want to write them down for myself to remember.  About 7 years ago we took a brief trip to Disney World - it was tied into Richard being there for a conference.  So basically it was me with 3 young kids hitting the parks alone for most of the time. Since then we had said we would go back when Jayna was 10.  So this September we headed back to Walt Disney World and had a wonderful time.

I spent a lot of time before our trip, planning and planning again.  My family prob. thought I was a bit obsessed, but I was trying to accomplish the best trip without spending a fortune.  And I wanted to have some great experiences.  Overall I was happy with our planning, although if we were to do it again there is probably a few minor things I would do differently.

We drove down and back stopping each way in GA. to spend the night.  It was a long drive- and if you know me well you know I hate long drives.  However, I have to say the drive itself was some of the best family time.  I loved listening to my kids interact with each.  It can be quite hysterical.

We stayed at the Art of Animation Resort, and we had a dining plan and we had the waterparks and more package.  We didn't have the park hopper option.  We started with the park hopper package but then changed to the waterparks and more option- they cost the same price so were interchangeable.  The waterparks and more package worked out well for us-we used a lot of the options:  we all went to Disney Quest once, and the girls went a 2nd time; Richard and I went mini golfing twice, and we went to one water park once and another water park twice.  It was really a nice way to add some things in instead of just the regular Disney parks. 

Dining:  We had the option of several sit down meals and here is where we ate for them:
The House of Blues:  by far the best food- it was so good  ( at least for adults)!  Jayna wasn't thrilled with the menu though and ended up ordering from the kids menu which was fine.
Sci-Fi-Diner- cool theming- sitting in the cars in a "drive in" theater, food was ok
50's Diner- not bad
Via Napoli-in Epcot in Italy, the waiter recommends we  take Italian lessons!  Food was pretty good and it was nice to try something different.
Then we did 2 character meals- prob. one would be enough, we did a dinner buffet at The Crystal Palace and a breakfast at Cape May Cafe.

One of the biggest things for me was "Getting my brave on"- I am not a thrill rider, but did get brave and ride rides that were scary to me!  And I did the snorkeling adventure at Typhoon Lagoon- the first time I did it without snorkel gear, because it freaks me out, the 2nd time I used the gear and it was very cool.

We spent time at all of  the parks:  Hollywood Studios (the favorite for all the kids!), Animal Kingdom-Richard liked seeing the bats, Magic Kingdom- the Monsters laugh floor was hysterical and I liked one of the shows, Jayna still liked "the small world" ride- she rode that tons when she was 3 and still enjoys it, and Epcot- the Epcot day I was beat, so we didn't see all of the "world" that I would have liked to, but I did really enjoy visiting the different countries and Jayna enjoyed a Perry the platypus adventure- really quite cool.  Epcot was Richard's favorite.

















We had a great time, some things we did together and sometimes we separated. The kids were a great age to go.  It will be a long time before we take another "big vacation" but I'm already to start planning!

And so it goes...

Sunday, August 26, 2012

Summer 2012

Well each of things I will write about, probably deserved a post of thier own, but so seldom does that happen - except in my mind!  Summer has come and is on its way out.  The kids start school this week, and the two schools that I work at have already started.

These pictures are pictures of Jayna and her friend at Del Grossos amusement park.  We went there for my work picnic.  She had such an amazing great time!  Bringing a friend really made a difference.  Sometimes, or perhaps even often, Jayna is the "odd one out" , not having a sibling close to her in age.  So when we do things like this she would end up riding with a semi- interested parent or a semi- interested older sibling.  She had the best day ever hanging out with her friend, and it really changed the experience for everyone.

Here are our two happy teenagers on the same day. 

So the next pictures are of the camping trip Jayna and I took.  I took Whitney by myself when she was younger, and Richard and Andrew have gone by themselves, so now it was Jayna's turn.  I have to say, it is always  give me that "girl power" feeling when I do something like that on my own.  Yes, I can set up the tent, yes I can start the fire, yes I can use the camp stove, yes I can tear down quickly at 7 in the morning before the storm rolls in and yes, I can release many fish after Jayna caught them! Go Sue!  Anyhow we had a great time.  We went to a Jellystone/Yogi bear campground.  I recommend those to everyone!  They have great activities planned and nice facilities.  This one was smaller than the one we camped at previously, but still had plenty to do.  I think Jayna's favorite was fishing.  She had tried fishing this summer near where we lived, but hadn't had much luck.  So she was thrilled when she started catching fish here- with our sub rolls!  She would yell " get the camera" as she reeled in a fish!  I was happy for her.  She swam a lot too as well as playing on the playground, taking a hayride, playing a game, and in the arcade, and reading at night in our tent.  So glad I could do that with her.




The next pictures are of our garden areas.  I loved the rhododendron in bloom this spring.  It was beautiful!  The peonies were beautiful too, when we moved in that bed was completely run over and I wasn't sure what to expect.  I did a lot of weeding and tearing out stuff, especially plants with burrs on them.  It was a lot of work,  I couldn't find a picture of them in bloom, but they were beautiful and smelled so good!  We only planted a few things for our garden this year- I was waiting to see what came up in the peony bed, or if we would make that our garden next year.  But there was a little strip by our garage where we planted tomatoes, basil and lettuce.  They were all successful- yay!




We did some volunteering at the animal shelter this summer. Not as much as I had anticipated, but some.  Andrew and Jayna are defintely cat people and Whitney, like her Dad, is a dog person.  And I ummm, prefer none.
My sister Linda and her daughter Cierra came to visit this summer for a few days.  She introduced us to geocaching and we went to see 4th of July fireworks together.
This is one of my recent favorite thrift store buys!  Cool huh?  I also found a great old mirror that is now hanging in our hallway.  We have a great thrift store nearby and have found some great deals!

The kids also spent some time at Grandma Asheads.  That was good for everyone I think.  The kids all think she is cool and she spoiled them.  Grandmas can be great because all they have to do is love them and accept them.  Andrew and Whitney went together, and Jayna went by herself.  She took them shopping and out to eat and just enjoyed time together.



Richard did an amazing job on our steps and hallway.  It was so much work- I think it was about 45 hrs. worth and about 6 gallons of paint- just for the hallways and steps!  Pair it with the picture of our living room and maybe you can see where we are going with our house. So far the formal LR has been done, the hallway and steps, downstairs 1/2 bath and the girls bedrooms have been painted. Still lots to do, but I think we are done with projects for awhile.

So that's a lot of our summer, I am really hoping for a good school year.  Jayna will be in 5th grade, Whitney 10th and this is Andrew's senior year. 

And so it goes....

Just read " Little Bee" by Chris Cleave