I’m Fine

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I totally stole this title from a meeting that I attended today.

How many of us have said this and not really meant it? I am guilty. I think most people are guilty of this white lie from time to time.

The children are all sick, the laundry is overflowing, the car is in the shop and someone asks “How are you?” Quick answer: “I’m fine!”

Today, I sat in a room full of wonderful, loving people that have probably said that they were fine when they were anything but fine.

It is hard living with someone with dementia. Sometimes you have the same conversation over and over again all day, every day, for an entire week. Some days your loved one will not get out of bed and you have a 11 am doctor’s appointment. Some days your father who was once a very well dressed man misses some spots shaving, his buttons on his freshly starched shirt are not buttoned correctly and his cowlick is standing straight up. But everything is fine. I’m fine.

Some days nothing goes as planned. Some days you feel like you should just stay in bed or maybe go back to bed. Some days Dad does not want to go to “school” but the sitter is not scheduled to show up for 6 more hours. Some days your mom calls to say that she does not like the “fill in” sitter that you realize is scheduled to come back tomorrow.

But if you ask me how I am doing, I will tell you I am fine.

We all have our baggage. Some days are better than others. It is part of life.

Today I walked into a room of people that are walking with me on this journey.  We are all on different parts of the journey but we are all walking together. I walked into this room today knowing that I had something on my heart. I knew that I was in a safe place and would not be judged for saying it out loud.

I was right. A weight was lifted off my shoulders and I am pretty sure that everyone in the room had at least thought the same thing that I said.

We were all fine!

Before I left today, I gathered some “love notes” scattered on the table. So many of them spoke to me. Some of them reminded me of my children and things that I want to say to them. I gathered a few and put them in my pocket.

I will leave you with one of them tonight.

Everything will be alright in the end. If it’s not alright, it’s not the end.

I believe that. I really do.

And . . . I’m fine.

I really am.

 

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Start Saving for Tomorrow, Today!

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Over 25 years ago my parents built the house of their dreams. My dad designed it and my mom decorated and they loved every minute of the process. It was truly a project of love.

As my dad designed the house he intended to stay in this house until he was rolled to Elmwood. He thought of everything, or so he thought.

His two-story home had the perfect space to add an elevator should they become to feeble to climb the stairs. The master bedroom and bath were on the main and the hallways were wide. The back door had a simple step up and a wide door was added so that should a wheelchair ever be part of their future, it could roll right in.

Everything was carefully thought out.

But no one considered dementia.

After an unusual health situation my mom was actually in a wheelchair so most of their plans made it easy for her to get in and out of the house. We did have to purchase a ramp but those are relatively in expensive and can be purchased online or at a mobility store. The price starts around $100 and goes up according to the length of the ramp you need. We opted for a portable ramp so that we could transport it to friends’ homes if we needed to.

The problem with the house was the many doors to the outside. There were six ways to exit the house and when dad decided he wanted to “go home” he would be out in a flash. Mom was in a wheelchair and although she could leave the house, she was anything but fast!

By the time my dad developed dementia, we had employed sitters for over two years. These sitters were hired to help care for my mom. As luck would have it, they ended up taking care of my dad too.

Sitters are easy to come by but hard to find the right fit. Think about it; these sitters will be in your personal space every day and in our case, 24 hours a day.

There are lots of agencies in town and anyone can ask around to find out which ones are better than others. Obviously you will have to try many sitters before you find the one that it is best for your family. We have been lucky enough to employ a handful of sitters that allows us to put together a schedule that works for everyone.

If you do not know how sitters work, let me try to educate you on this relationship.

We schedule our sitters on twelve-hour shifts. It allows for little interruption in my parents’ day and with dementia it has allowed us to have very few changes during a normal day. If you go through an agency, you have the luxury of knowing that you are always covered. If your regular sitter gets sick or needs time off, the agency will send a replacement. Problem solved. If you hire sitters directly, you will be the one to fill the unexpected sick days. This can be very difficult and sometimes it feels impossible. I highly recommend that you have an agency in your contacts for these emergencies.

We have used two agencies for our back up sitters and we have been pleased with both. You will need to do your homework ahead of time so that when your emergencies arises (and it will) the agency already has a completed profile on your loved one. Be sure that you know the rules of the agency and that the agency knows what you expect a sitter to do.

Believe it or not some sitters do just that . . . SIT. This is fine if you are in a hospital situation but if you are trying to run a household, you will need someone with other skills.

Before I get into the cost of a sitter, let me make one more comment about the relationship that you have with a sitter. It is important that no matter how much you like or even love the sitter that you have hired, they are an employee. Relationships with employees can be difficult. If you are like me, you want everyone to be happy. It is hard to keep everyone happy. Sometimes you have to make changes, or have difficult employer-employee conversations or even fire a sitter. It is hard.

We have found that over time some sitters become so familiar with the family that they almost feel like family. But they are not. You have to make sure that if the person being cared for cannot be “in charge” that you are in charge! You make the rules and you make the decisions. I am not talking about deciding what is for dinner and when they should eat. I am talking about when it is time to seek medical attention and when changes in care need to be made. You do not want your loved one to feel like they are being told what to do by the people you are paying to care for them. I am not sure if that makes any sense at all but you will be able to tell if the sitter starts to feel like they are head of the castle. Sometimes things can change rather quickly; before you even realize what is happening. Stay alert and involved.

Now that we have touched on the emotional side it is time to talk about money.

As you might have guessed, everything comes with a price tag. The cost of a sitter can run anywhere from $10 an hour to $26 and above. Remember that in many cases you get what you pay for! You do not want just anyone taking care of your loved one. You need to check references, have background checks and most importantly make sure they are capable of doing the job you are paying them for.

Money. It takes a lot of money to have sitters in your home. Some people have long-term care insurance and this can be helpful in covering some of the cost. Unfortunately my parents do not have this type of insurance so I am not very familiar with the detailed benefits you receive from this insurance. However, I was lucky enough to meet Suzanne Blankenship this past Summer and she has a wonderful book called How To Take Care of Old People Without Losing Your Marbles. I believe she covers this topic in her book. You can purchase this book on Amazon.

So if you do not have long-term care insurance, you will need to have deep pockets. So save NOW!

If you are lucky, you will grow old one day and you will be glad that you participated in retirement plans and saved money out of each paycheck! You might prefer to spend your money on nice clothes and fancy homes but none of that will take care of you in your elder years. The sitter that you employ in your 80’s will have no use for the designer clothes you wore in your 30’s. And for that matter, neither will you!

So let’s do a little math and see what the cost of a sitter (using $15 and hour) will be for your loved one 24 hours a day for one week.  There are 168 hours in a week at $15 for a total of $2,520. If you need sitters around the clock for a month, it will cost $10,800.  This example does not include holidays. You will have to pay at least time and a half for care on holidays. That means Christmas Eve, Christmas Day, New Years, Memorial day and so on.

It adds up quickly so if you are not saving now, what are you waiting for?

It is safe to say that your social security check will not care for you in your elder years. Plan now! Consider these things:

  • If you are still in your home and your home is paid off, you will still have to maintain your home. (utilities, yard, insurance)
  • If you are in a retirement community, you will have monthly rent. In 2017 your rent in Birmingham, AL  will likely start at $4,000 and go up. You are charged a small fee for the second person.

Life is expensive. Don’t rely on Social Security or the success of your parents.

Start saving for tomorrow, today.

You will be glad that you did.

 

 

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!