My Dad is Awesome and So Are You!

k15505690I attended a wonderful luncheon two weeks ago to celebrate the one year anniversary of Encore, an adult respite program at Canterbury United Methodist Church. So many people attended the luncheon and celebrated the numerous achievements of Encore. It was a grand celebration.

Encore was established to be a safe place for people with dementia. Every activity is set up so that the participant feels successful. Every moment is perfectly planned out. The day starts when the person (like my dad) steps out of the car and is warmly greeted like a long-lost friend. Coffee is flowing and conversations are in full swing the moment they cross through the door.

Two things stood out to me during the celebration in June. The first was revealed to me in the video that played for our group. The video showed smiling faces sitting in chairs stretching and exercising just like a normal person (someone without dementia) might do each day. I quickly searched the video for my dad. There he was front and center wearing a wool vest (because it is June after all) and he was NOT exercising! That sounds about right! My dad was never big on exercising and even with dementia . . . he was still not exercising, Some things never change.

The second thing that jumped out at me was a comment that one of the many volunteers said as she addressed the group. She told the room that she loved being with our “people.” She told us that she enjoyed being with them and listening to their stories and laughing with them each day. She said “I love being with your ‘people’ even with their dementia.” She went on to say “I can only imagine how wonderful they were before they had dementia.” WOW!

I thought about my dad and the person he was today, with dementia. He is still a great man. He is funny and at times considerate and as I have said before, he is my hero. Gosh, how I wish these people had known my dad before dementia! Many of his traits are still part of him today but I am not sure I can explain how much “better” he was before dementia.

I wanted to stand up at my round table and shout my dad was AWESOME! I wish you had known him before dementia.

He was a banker. He served on committee’s at this very church. He was an Alpha Tau Omega in college and he still kept up with his college and neighborhood friends. My dad was a giver, not only in his professional life but in his private life as well. In the not so distant past, my dad sat in a hospital room with my mom and cried because he thought he was going to lose her. I held his head in my hands as he told me he would give his life for hers. He loved my mom and treated her like a queen. My dad was awesome and in many ways he still is but in some ways he is different. Now my dad sometimes thinks I am my sister. He may or may not recognize my mom, his wife, and he is losing his filter. He says things and words that he never said before.

Today, my dad misses his house. He misses the life that he had before dementia. He misses traveling with my mom, driving his favorite BMW, helping his children and his grandchildren. My dad misses life and I miss it for him.

So, I am glad you love being with my dad now that he has dementia but you would have been amazed at the man he was before dementia. He was truly amazing in almost every way.

My family is so lucky to have Encore in our life. We are blessed to have church members, people in our community and even people outside our community give their time and talents to be with our “people” each week. What would we do without you?

I will tell you what we would do without you. We would not have peace of mind that our father/mother/wife/husband/daughter/son was being loved while we get a much-needed break. We would not get to see the smile on their face when they leave the building holding their new creation. We would miss out on the tune they would be humming as they leave the Encore Choir. We would miss you, each and every one of you.

So, yes, I am sorry that you did not know my dad before his dementia. But you would be happy to know that if you DID know my dad before dementia, you would have loved him just as much.

You are awesome and we are blessed to have you in our life.

My dad is still awesome and I am still blessed to have him in my life.

So here is to being AWESOME together with Encore.

Triggers and Full Moons

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I just received a text from my sister telling me that we will have a full moon in three days. This will surely mean that my dad will be quite active and likely depressed.

I have noticed that my dad spends more time in “La La” land lately. He is always happy to see me and from what I can tell he know who I am. We have great conversations. To an outsider, everything looks quite normal.

My mom desperately misses my dad. She misses their outings and most importantly, she misses their conversation. She will try anything to make him be the man he once was.

Last week, she told me that he needed to feel important and that he wanted feel like he was contributing. Her suggestion was that I bring over the bank statements and let him comb through them. I reminded her that this was a trigger and the end result could be less than fun. I reminded her that he could no longer read the statements. I reminded her that if I explained the activity he would not follow it and if he did, he would not remember it.

But, I gave in and I took the statements to my dad. His face lit up when I asked him if he wanted to look at the statements. I gave him his glasses and his hearing aids and together we plowed through statements.

And so it began.

“Is this all my money?”

“Is your money commingled with my money?”

“If she (my mom) decides to leave me and get married, can she take all my money?”

He asked all the ‘normal’ questions and I had all the ‘normal’ answers. Yes, it is all your money. No, my money is not mixed with your money and finally, Mom would never leave you! You are the love of her life.

Dad often thinks he is another place. Sometimes he is in Mobile and sometimes he is at the beach or in Tuscaloosa or at his mother’s house or anywhere but his apartment at the retirement community. Today he was in Europe! It tool me a minute to realize that he had traveled so far a way. He explained that he was willing to come back to the states if I thought it would be better for him to be closer to his money.

Triggers + Full Moons = Endless Excitement

I knew that the statements would not “fix” my father. Yes, I did see a glimmer of the retired banker in his eyes when I brought the bank statements in but that was very short-lived.

I wish that a stack of bank statements would end the dementia and I would have my father back. But that will not happen.

I wish that my mom could enjoy normal conversations with my father again but that will likely not happen either.

Dementia is awful but fortunately we can still enjoy moments with dad where it seems like nothing has changed. You have to be on your toes!

If you are not careful you will think you are in Homewood and realize that you are in Europe and you will have no idea how you got there!

Full moon! Three days and counting.

 

 

I Pray for Patience

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I have not blogged in a month or so and it is not because nothing has happened in the world of dementia! Life has happened. Some good and some not so good but every day is an adventure.

I have found that I pray a lot more these days. Do I pray because life is good and we have been blessed with many good things? Yes! I am so thankful for my four beautiful children and all of the things they bring into my life. Even when it means I spend my afternoons in the car. I am thankful for my husband and that he is steady and calm when I am not.

I pray when things are not great. I pray for patience. I have noticed that I have very little patience with my mom these days. It is not because she has done anything wrong it is just that I am not as patient as I should be. I have to answer the same questions over and over.  I have to remind her that no one is changing her passwords on her iPad. I am pulled in many directions at the same time and sometimes I have to make the choice of whether to pick my children and husband or my parents.

Anyone caring for their parents and their children can relate to this time in life. So I pray for patience. I pray that I can slow down long enough to receive the gift of patience and be wise enough to know when this gift has been granted.

I remember studying the different types of prayers with a group of young mothers at St. Luke’s. We talked about the prayers that start with “Please, please, please” and the prayers that start with “thank you.”

I am pretty sure I over use the “please, please, please” prayers. I am also confident that I am not alone in this thought or this prayer.

Today I am thankful for the good visit I had with my parents. I have had a few days “not dealing with parent stuff” and that feels like a mini vacation. So today, I spent time with Mom and Dad and I was actually patient. I did not mind telling my dad (over and over and over) that he was watching Ole Miss play Florida in softball not Auburn and Florida. I did not falter when he told me his thoughts (over and over and over) on the physical build of the softball players versus some football player! I did not laugh when he kept asking me if the jackets that I had him try on were women’s jackets. They were his jackets and he had too many of them.

I was thankful that Dad was no longer telling me that Mom was about to breathe her last breath. We are not sure why he thought this might be the case but it had gone on for over 24 hours. My sister and I even enjoyed a few text messages with each other exclaiming that mom was enjoying dinner at DG before she drew her last breath! We held our tongue when Dad called to say that Mom was dead and we could hear her yelling “I am not!!” in the background.

We pray for patience. We are granted patience and then life gets in the way and we forget that been blessed this gift long ago. The gift of patience was granted but I forget to slow down and accept it  . . . again. I have filed it away in that file cabinet in my head and forget to pull it out and use it the way it was intended to be used.

I am patient. I have the gift of patience. I just have to slow down and remember that some days require more patience than others.

I will slow down this week and be patient.

Cars R Us

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It is no secret, I like to shop. It is also not a secret that my dad likes to buy cars.

Eighteen months ago we had to sell my dad’s favorite car. I do not remember the specific model of the car but it was a silver BMW and he loved it! My sister and I were not looking forward to taking the car away but in a difficult moment on the fourth of July, my dad walked to his garage and did not recognize his car. He thought someone else had parked their car in his garage and he wanted it OUT!

I felt like I was stealing something priceless as I climbed through the neighbor’s monkey grass and slipped up their driveway to retrieve the BMW. In a flash I was backing that BMW out of the driveway never to be seen by my dad again. It was a sad day.

Fast forward to March 2017 and now  I am van shopping.

The end of 2016 brought a lot of changes to our family and many of them were not changes we were excited about. After my Mom’s unexpected surgeries in November, she is no longer able to stand and pivot which is what you have to be able to do to get out of a wheelchair and into a car. Thus the shopping for a van.

My sister and I have benefited from my Dad’s love to buy cars. He bought me my first car that I shared with my sister. It was a bright and I do mean BRIGHT yellow Volkswagen bug. I learned to drive a stick shift in this bug. I used to pray that Mr. Noles would not make me stop on the hill at the entrance to Mountain Brook High School! It took me a while to perfect the stop and start with a clutch and not roll back into the car behind me. I think Mr. Noles recognized this and he always waved me through the intersection. Thank you Mr. Noles.

Then Dad bought my first grown up car when I graduated from college. It was a pearl white Oldsmobile Calais. I loved that car and drove it until I had my first child. In the past twenty years or so my Dad has treated me and my sister to a new car every few years. These new vehicles came at times when we really needed a new car but could not afford to buy one and sometimes the new cars were just a fun surprise on a beautiful Fall day.

My Dad loves to buy cars! Aren’t I lucky!

So for the last month I have been looking for a car (actually a van) for my Dad. He may not be able to drive it but he will ride in it and it is important to me that he is proud of his new vehicle.

I toyed with the idea of buying a used conversion van but I could never really picture my dad buying a used van for my mom. I told the salesman to bring me a NEW van. What do you have on your lot that is brand new and has lots of bells and whistles?

I looked high and low for the right mobility van. I had one dealer offer me a Honda Odyssey that was loaded! I drive an Odyssey so I thought this might be the one. But when the salesman said it was white I could hear my Dad telling me “Don’t get a white van. You will look like you are driving a milk truck!” I cannot get my Dad a milk truck.

Today we made the decision and the van that is going to be delivered to my dad will be something he can be proud of.

I am nervous that I might have missed something. I have gone over the list of what this van has to offer. It has leather seats, the necessary ramp and automated doors. It has the appropriate tie downs to secure the wheelchair. It is not some obscure color that will cause people to cock their head and wonder where it came from. I am pretty sure it is the complete package. Fingers crossed.

I have never bought a vehicle without my husband or my father giving it the nod. I know that sounds silly and I am sure that many women have just fallen out of their chair thinking that I am suggesting that a woman cannot buy a car all by herself. I promise I am not trying to turn back the clocks on the women’s’ revolution.

Trust me, that is not the issue. I have learned that I can do almost anything over the last two years. My sister and I have made decisions about so many health and financial issues that I think it would make most people’s’ head spin. I know our heads have been spinning at times.

I am confident.  My Dad likes to buy cars and I want to pick the car/van that he would pick if he could do this on his own.

I am confident . . . . I believe I have picked the correct one.

Delivery is a few weeks away so only time will tell if I picked the right one.

Only time will tell.

 

Put on your oxygen mask

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Life is full of bumps. Some bumps are good: new babies, unexpected travel, a puppy!

Some bumps are tough: unexpected job changes, death of a friend or a loved one, a parent with dementia.

Life is full of bumps and we all learn to ride them, one way or another. In my house we have a saying when we hit a difficult patch. We say that “it is just a bump in the road.” This saying goes hand in hand with “this too shall pass.”

Ask my children and they will all tell you that I have said these things countless times over their lives.

It is just a bump in the road tells my family that “it” may be bad today but tomorrow we will look back and see that “it” was just a bump in the road. “It” may be a crisis today but “it” will be a learning opportunity tomorrow. Today “it” may seem like the end of the world but if we give “it” time we will see that our problems are not insurmountable.

To me, “this too shall pass” means that I should not get all excited or all upset over something that is happening now because before I know it something else will be in my path. My mom used this analogy when I had young children.

At one point my daughter would not wear anything but t-shirts and sofie shorts. Everyday I watched girls file into school wearing cute tops and shorts or pretty dresses. I thought my daughter was beautiful and I wanted her to see that she was beautiful. I know that clothes do not make the child but I wanted everyone to see her beauty not her tomboy image. Mom said this too shall pass and she was right. Eventually she set aside her tomboy duds and traded them for “girl clothes.” It passed and life moved on.

So what does this have to do with dementia? Absolutely nothing and then again . . . Everything.

Dementia is one enormous, hideous bump in the road. It throws off all of our plans. It changes the future and it changes the present. Plans have to change and lives are turned upside down. The bump gets bigger and then we remember that this too shall pass.

Life is about change. Bumps broaden our circle of friends and change the direction in which our life travels. My circle has grown to include people in the support group. I cannot even tell you the name of some of these people but I know their faces and I know the bumps in their road. I know that we are all waiting for this to pass.

It will pass . . . we just don’t know when . . . or how it will pass.

I had lunch today with a new friend, a wise woman, a woman who did not know me until we met over lunch today.

I shared my story and I shared my dreams for dementia. I told her how hard it was to be a caregiver and I told her how exhausting it could be. She seemed to understand and I think she could relate in some ways.

We talked for a while and she left me with a pearl. She reminded me of the instructions that a flight attendant gives you on an airplane. “Put the oxygen mask on yourself first.”

Have you ever really thought about what this means?

It means that you have to save yourself first so that you can help someone else.

The same is true when you are a caregiver. You have to save yourself so that you can be there for someone else.

I cannot give everything I have to my parents because I have to save something for my husband and my children. I cannot do everything and be everything for someone else because in the end, I need to stand by my husband and my children.

This in no way means that I cannot care for my parents.

But it means that I have to put on my oxygen mask first.

And if you are a caregiver, you too have to put on your oxygen mask.

Put on your oxygen mask first.

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.

 

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.