2016 is Coming to an End

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As 2016 comes to a close, I find myself excited to see this turbulent year come to an end.

This year has not been all bad, as a matter of fact a lot of good things happened in 2016. My oldest child graduated from college and has a wonderful job as a first grade teacher. My second child found happiness at the University of Alabama (Roll Tide) and my twins are having a successful last year in junior high school. My husband and I have had some wonderful trip and are planning for a few more in 2017. All in all it has been a good year.

But I am ready to celebrate the end of 2016! My sister and I have learned a lot about elder care . . . more than we probably care to know! We have seen many of our friends move their parents out of houses and into retirement communities. We have answered their questions about how to find the right living community for aging parents and how to navigate the health care community. The questions seem never-ending and the information “out there” can be overwhelming.

So as I say good-bye to 2016, I think back on some of the most valuable pieces of information that I have uncovered this year.

First, your team is the most important part of caring for aging parents. I cannot imagine doing this journey without my sister. She is my partner and therapist! We have become excellent “texters”; our children would be proud! I think I can even blindly text “Calgon take me away” as I listen to my mom complain about a fill in sitter!

As a team, we are able to schedule 28 (yes – 28)  sitting jobs a week! We can use Shipt to deliver groceries at a moments notice. We can play “good daughter, bad daughter” with the nursing staff in the rehabilitation center. We can order food to settle down the staff and have it delivered in time to cover the day shift AND the night shift!

Your team is very important! Build your team wisely.

Second, we have learned to scour our community for services that will aid our parents and make our life easier. For example, I did not know that you could rent a transportation vehicle to carry a person in a wheelchair to your house on Christmas day! It was wonderful! They picked up my parents and delivered them safely to my door. However, these services are not without their flaws. We scheduled pick up at 3 pm on Christmas day to return my mom to the center where she is staying while she learns to get around with two bum legs! The ride did not arrive until 4:10 and at this point her oxygen tank had been empty for at least an hour and my nerves were SHOT! I owe a tip and an apology to the transportation company. I was such a wreck by the time the drop off was complete I never thought of tipping the gentleman . . . my dad taught me better than that! Always tip.

In 2017, we will be looking to sell my parents’ car and purchase our own vehicle that will transport my mom in her wheelchair. I hope the vehicle comes with a lot of instructions. If you see us driving down the road, stay back, just in case a wheelchair rolls out the back door at a red light!

I need to thank all my friends that have told me how to seek out the best vehicle for my mom. I had no idea there were so many options and I am thankful for those that traveled this road before me.

I have learned that you cannot rely solely on other people’s experience with rehab. You have to visit many facilities and pick the one that you feel best about. Trust your gut. We did and so far so good.

The saving grace in 2016 is Encore and the wonderful friends I have made through the support group for people caring for loved ones with dementia. My dad calls Encore “school” and so that is how we refer to it as well. School is the best gift we have been given in 2016. Dad goes to school twice a week. It is a welcome break for us and the caregivers and best of all, it is often the bright spot in Dad’s day. We love school and we cannot wait for it to start back next week!

I love my many new friends from the support group at Canterbury. We are all on this dementia journey together. When I talk to one of these friends, I know that they can relate to my situation. I know that when I run into Sally at Smith’s in the village that she too is glad that Thanksgiving is over! I know that she also measures a successful day in the same way that I measure a successful day with a parent with dementia.

My new friends are a safe place. We laugh and we cry and know that our loved ones are still there and they are not defined by their disease. We are happy to share our experiences with anyone that asks and we are quick to give a hug because we know that is all you could do at times.

Hugs are important. My team is important. My community is important and 2016 is almost over.

So what will 2017 bring?

God only knows the answer to this but here is what I hope it brings:

I hope that someone finds a cure for cancer and dementia. I hope that those people who are looking for their “team” ask me to join them. I hope that more people like my dad can find a “school” to make them feel important. I hope that my children are healthy and happy.

I hope that we enjoy 2017. I hope that we look for the good things and do not get stuck on the difficult things. I hope that we learn from those difficult moments and help others avoid the same mistakes.

I hope we continue to focus on the person and not the disease.

I have hope for 2017.

My Plate is Full

christmas-cookies-images-1I have wanted to write but I have not had time. I have wanted to rest but I have not had time. I want to enjoy the Christmas season . . . but I don’t have time.

I am not complaining. Ok. I am complaining a little bit. Everyone is bustling about this time of year. Everyone has a full plate and my plate is no fuller than anyone elses plate. But MAN IS MY PLATE FULL!

Life turned upside down a little over a week ago when my mom broke her foot. Two surgeries later she is still in the hospital trying to get to rehab. Dad is being carted to and from the hospital and we are employing sitters for both parents in two locations.

Consistency. We are looking for familiar faces. It is so important that Dad’s world NOT be turned upside down. This means that he gets the familiar sitters and when we have to fill in with outsiders, Mom gets potluck!

While trying to keep Dad’s life normal, I realize all the things that Mom has been doing while we were not looking.

While running between the hospital and Brookdale, I have started checking their mail. Unfortunately mail runs late this time of year and I cannot get by their daily. I learned today that Dad gets the mail and throws it away. All of it! Christmas cards. Personal letters. Catalogs. Bills. Everything!

Solution: Sitters go thru the mail with him and my sister gets a key so that she can check the mail when I cannot. Problem solved. I hope!

Dad has started fixating on things. If he is missing his driver’s licence (and he was) he goes over and over it trying to imagine where it might be. Even when we tell him why it was taken out of his wallet he does not grasp the reason. When the license is returned to him he continues to wonder where it has been. He talks about it constantly until you are ready to SCREAM! Finally he moves on . . . and fixates on something else . . . like the small yellow question mark in the right hand corner of the hospital monitor hooked up to my mother. It never ends.

I joined Dad at a doctor’s appointment today. It was a routine visit with his audiologist. As luck would have it their computer was down and we had to rehash dad’s medical history. This was challenging for him and for me. When in doubt, wing it! I need to pay closer attention to his medical needs so that I can confidently answer the questions that he cannot.

I have learned a lot about hearing aids. I know how to change those tiny tiny batteries and I even know how to put them in. I hope someone reminds me of these skills when I need a hearing aid!

I travel with a list of both parents’ medications. This is one of the most important things you can do for your parents. I am willing to guess on how long my dad has had a hearing problem, or how tall he is or even when he last had his hearing tested but I will not risk messing up on his medication. If you do not know the medication your parents take . . . find out and make a list!

So that is what I did between 11 and 5 today.

Not really. But it feels like I have accomplished a lot today and my list is no shorter than it was when I woke up.

My plate is full. So is yours. But life goes on and Christmas will still be here in 18 days. It will come even if the house is not decorated . . . thank you to my family for taking care of most of that. Christmas will come even if the Christmas cards are not done. I am so thankful I took care of that around Halloween.

My plate is full and so is my heart.

And so is my glass of wine.

 

 

 

We knew better . . . but we forgot

k15968673  I feel like I have become very educated on dementia over the last 12 to 18 months. I have attended seminars, joined support groups, talked to people in many different areas and read a lot of books. I feel very informed!

Heck! I am informed! I still have a lot to learn but I feel fairly prepared to discuss dementia with my friends and neighbors. And then all heck breaks loose and I forget it all. Gone! All that knowledge is forgotten in a flash.

I write this post thinking back to a Saturday a few weeks ago. Dad was having a bad day. A really bad day. Dad was cussing at my sister in a loud and very public manner. He was adamant about going “home”. It was a bad day in a very public place.

We muddled through the crisis. Dad was safe and back inside Brookdale, my mom was embarrassed and my sister was in the car headed to her home. It should have ended there but it did not.

We should have left the past in the past. We knew to leave the past in the past but we did not remember all the things that we knew!

On Sunday, my mom was still embarrassed about the things my dad said to my sister and she knew that my dad would never have said those things if he had been in his right mind. Dad had no memory of his poor behavior on Saturday but Mom decided to enlighten him. This may have sounded like a good plan in her mind but it was not.

Although Dad could not remember his behavior that terrible Saturday afternoon, he could not forget the story that my mom told him the next day. He could not stop apologizing for his behavior and he sulked for three days. He was like a child that had been scolded. It was pitiful.

I felt bad for my dad. He apologized over and over. He hung his head in shame and vowed to never attend another family function for fear he might misbehave again. We told him over and over that he was forgiven and that we wanted him to attend all of our family functions but he kept his head down.

I felt sorry for my mom because, although we could leave and walk away from this sullen man, she was stuck. She sat with him for days as he remembered the story she told him yet he never remembered his actual behavior.

We never should have told him about the scene he caused in front of Brookdale on that Saturday afternoon. We knew better . . . but we forgot.

We have to remind ourselves that when Dad lashes out, it is not our dad but his disease. We love Dad and we forgive him for anything that he might say during one of these bad days.

So why tell him something that he does not remember?

I cannot think of a single thing that my father could do that I would not forgive him for . . . so I cannot think of a reason to tell him something he does not remember doing.

We knew better and we will not repeat this mistake again . . . I hope.

It is the disease not the man.

 

Missing you

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I miss my Dad. I am blessed to still have him here with me but I miss him just the same. I am lucky to see the good parts of my Dad’s day. I love his dry sense of humor and his quick wit. But I miss him.

Today we had a quick visit. A good visit.  I was surprised to see him up and dressed for the day when I arrived around ten o’clock. We joked about Halloween and what his costume might be . We decided he would be dressed as a retired banker, a well dressed retired banker.

My sister got a nice long visit in a little bit later in the day and then all hell broke loose.

I have to commend my mom. She has done an incredible job shielding us from Dad’s sundown moments. We have had very few phone calls from my dad asking us to take him home. I have to admit that I was taking no news to be good news. Silly me!

I did not realize that dad was often confused as to who my mom was. I knew this happened but I thought we were in a good period. I now know that my mom has been dealing with his sundowning on her own.

Today my Dad was not himself. He said things he did not mean and he showed a side of himself that many of us did not recognize. I miss my Dad.

So what do you do when you are in public and dad has a complete come apart? Well, you do not reason with him. Have you ever reasoned with a two-year old? It is not possible. I can tell you that I made promises on the telephone today that I knew I would not be able to keep. You do not say “remember” because he does not remember. You do not correct his misinformation because he does not believe you and most likely he does not even know who you are. I miss my Dad.

I am thankful for our support system. I am thankful for police officers that are trained to help us navigate this road. I am thankful that my parents are not in their house on Norman Drive with six doors to the outside. I am thankful for our sitters that generally remain calm in a situation that is anything but calm. I am thankful that my sister took the brunt of it today because I would not have handled it as well as she did. I am thankful that my mom is stong enough to take his hurtful comments in stride . . . most of the time.

I miss my Dad and I wonder how long this will go on.

I am thankful for football. Football is calming to my dad. It takes him back to a time where he was in control of life. It provides him with hours of enjoyment and keeps his brain from wandering.

I am thankful and I am sad and I miss my Dad.

Life is Gift

tree-of-life-clipart-pvjy1j-clipartLife is gift. This is not a phrase I coined. To be honest, I am not really sure who said it first. We say “Life is Gift” a lot in my community.

Years ago there was a priest at St. Luke’s Episcopal Church named John Claypool. He preached thousands of sermons and wrote more books than I can name off the top of my head. He was a great man and many followed his work. John often talked about life being a gift and he was not wrong.

Life is a gift. Life is a birthday gift. Yesterday was my birthday and I received many gifts . . . I love gifts. Who doesn’t love a gift? I like small ones in shiny packages. I like big gifts that you cannot hold in your lap and I like gifts that are so big they will not fit in a box or even an oversized bag.

One of the many gifts I received yesterday was the gift of time. I am ALWAYS in a hurry. I have a long ‘to do’ list and a lot on my plate. I am super woman, at least in my own head, and I can do just about anything or at least anything I want to do.

Yesterday I told my parents that I was going to come by and visit. I alloted myself time to sit and visit and actually get some things done for my parents. I am the first to admit that I breeze in and out of my parent’s place. I run in, give hugs and kisses, pick up bills, have a short visit and then I am out the door. But not on my birthday!

I started my visit by searching through their storage bin in hopes of finding the book that we misplaced during the move over a year ago. Unfortunately it was not to be found yesterday. But after the search I sat and had a nice visit with my dad. He looked very dapper which is not unusual. My dad loves clothes and is generally a well dressed man!

We covered all of the important topics: SEC football, grandchildren and my days activities. We had a great visit. Mom arrived shortly there after and we continues to visit and I even opened a birthday gift. Before long the topic returned to my dad’s clothes. Every well dressed man needs new shoes and he had some but was not quite sure they were his style. As we discussed the possible trouser options, we moved to the room that we all refer to as his dressing room. It is really a second bedroom but it houses his clothes too.

Before I knew it we were cleaning out his closet. We laughed at the number of monogrammed dress shirts that he had and the endless supply of plaid shirts and striped shirts and polo shirts and the list goes on! We organized his blazers by season and moved the summer shirts to the back of the closet. We pulled sweaters out and tossed them to my mom to fold so they could be relocated to the closet. We laughed at expensive suits that he had had made that were no longer his taste. I am not sure they were ever his taste but dad likes to dress well and surely this look was in style . . . at the time.

If you had told me that I would spend ninety minutes cleaning out my dad’s closet on my birthday, I would have laughed in your face. After all, it was my day. A day all about me. But to be honest, cleaning out my dad’s closet was about me. It was about me and my dad and my mom.

We laughed and we talked and studied clothing with a sharp eye. If it was dirty it went to the cleaners. If it was torn it went in the trash. If it was useable but not wearable by my dad, it is off to the Goodwill. We laughed more yesterday then we had in a while. It was a normal day cleaning out my dad’s closet.

In his mind, we might have been cleaning out his closet so that he could gather the clothing that he ‘thinks’ is at other houses. But in my mind, we were enjoying life. Life is gift and yesterday it was an incredible gift to me.

Life is gift!

 

None of Us are Promised a Tomorrow

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When I was a child I always put off what needed to be done today with the promise that I would do it tomorrow. As an adult I often do the same thing. I can fold those clothes tomorrow (fluff cycle is awesome), balance that checkbook tomorrow, run to the post office tomorrow  . . . as I have traveled all around town today with a package to drop of at the post office. I will do that first thing in the morning. I promise!

Today I learned that a friend of mine lost her mother. I cannot remember specifically the type of dementia her mother suffered from, but I do know that many families in my support group have loved ones with the same disease. It is a terrible disease that robs the entire family of so much.

Dementia robs us of a future. It robs us of the ability to make new fun memories together. It does not, however, rob us of all the gifts we have received from our loved one. It is the memories that we carry in our soul that make us who we are today.

Let me tell you about some of the memories that shaped me and made me who I am today.

I have successfully taught two children to drive and God willing, I will teach two more children to drive in a few short months. I can honestly tell you that I do NOT enjoy this part of parenting. I love life and I want to live for a long time! My parents taught me to drive. I remember hours in parking lots. I remember practicing a stick shift on the gentle slope of Norman Drive. I can honestly say that my parents were very patient. Time after time they let me drive and with every mistake I made I had a gentle reminder of how to do things the correct way, the safe way. I could easily hand off my children to their father and let him do all the driver’s ed, but I need to make those memories with my children too. Now, I am not going to say that my parents did not slam on the imaginary breaks or have a death grip on the arm rest and believe me, I do that too! But this is a rite of passage and I want to make these memories with my children too; including the death grip and the imaginary breaks.

I have sent daughters out on first dates. When I went on my first date, my father made sure I had a dime with me. My children would look at me like I was crazy if I handed them a dime or in this day a quarter. The dime was to call home if I needed my dad to come get me. I even remember my mom sewing a tiny pocket in an evening dress so I could have that dime even if I did not carry a purse. So I do not have to send my children out with a dime or a quarter because, thanks to technology, they have a cell phone. However, they know I will come get them any time anywhere. No questions asked. You call and I will come. Period. If my dad was able to drive today, he would still come get me; no questions asked. Period.

These are just two examples of what my parents instilled in me. I told my friend today that she would always have her memories and they made her the wonderful mom that she is today. I know this easy for me to say, I still have both of my parents. My friend has lost both of her parents and I did not know either one of them. However, I am certain that she learned wonderful things from her parents. I bet she has good memories and bad memories and I bet all of them together make her the person that she is today.

No one is promised tomorrow – with or without dementia.

But I will always do my very best to see my father for who he is and who he was and not for the disease that he has today. He is not the disease. He is a parent that still has a lot to offer and a lot to teach me. Some days he teaches me patience and some days he teaches me to laugh.

He is STILL trying to teach me to slow down because no on is promised a tomorrow so we better enjoy today.

It Is A Good Good Day

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It is a good good day! It is a good day when the University of Alabama wins a football game (Roll Tide) and it is a good day when I call my parents and my dad sounds like my dad!

I have had two great conversations with my dad recently. The first conversation was after I attended an Alabama football game in Oxford, MS. If you watched the game you know how exhausting it was. We were worn out not only because of the heat and humidity but also because of the game itself. Thankfully we walked away with a win! Last year I would have called my parents while still in the stands so they could enjoy a student led rendition of Rammer Jammer. But this year I decided to wait and call after we left the stadium.

My dad answered the phone almost immediately as if he knew it was me calling to relive the win! “How about that game,” my dad declared. How about it is right!! He watched the game on tv and knew that we had many ups and downs. He recounted the quarters where Alabama was losing to Ole Miss and he rejoiced in the final outcome – – A WIN!! RTR (Roll Tide Roll for those of you that do not understand RTR)

The only sign that something was not as it should be was my dad asking me where I was over and over again. It was a good day.

My second good conversation came this morning. I made my standard daily phone call and he answered the phone. He was totally in the present. I was hesitant to tell him why I called because I had really called to go over some financial matters with my mom. In the past, the discussion of money irritated my dad so I try not to bring banking matters up in front of him. As I have said before, I have all of his bank statements and bills come to my house.

Today, I felt like I had to come clean with my dad and tell him that I had just met with some of his bankers and I assured him that he was financially secure. I then held my breath and waited for irritation to follow suite. It did not happen! My mom actually got on the other line and the three of us talked about some financial matters. Dad had very appropriate comments and suggestions. All was good!

It was a good good day!