The Most Wonderful Time of the Year

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Christmas time! The most wonderful time of the year . . . or is it?

I love Christmas! I love the decorations, the lights, the smells, everything! I like everything about Christmas. Except for last Christmas.

Mom was in the hospital, Dad was confused and my sister and I were balancing four sitters a day for about three months! It was exhausting.

This year will be different.

The tree is up, gifts are wrapped (most of them), Christmas cookies are spread out on my kitchen counter and snow is on the ground . . . in December . . . in Alabama! It must be a good sign. Right?

Mom and Dad are tucked into their quarters with only one sitter (thank goodness) and their place is decorated. There is not a square inch that does not have Christmas in it or on it. Of course, we had to do some rearranging to make Christmas happen in 215 East.

One of the sitters put every single caroller on the coffee table and every single piece of crystal on the chest. It looked like Christmas threw up in their nest!

Well, you cannot go in and simply move a few things around to neaten up the place. One thing leads to another and before you know it you are cleaning out drawers and closets and the thrill you get is exhilarating!!

We found the missing car key that a sitter lost months ago! We found shoes that had never been worn. We found tacky scratch pads that come in every Publisher’s Clearinghouse envelope. We found dust bunnies that had multiplied into small villages of dust bunnies!

The best thing we found was a warm coat. You see my mom loves coats! She seems to collect them much like some people collect figurines. This habit was manageable in their house with many many closets but not so manageable in 215.

Well it is Christmas time. A time that it is better to give than receive. Although it is a lot of fun to receive! While Daddy stared at the Christmas tree, Mom parted with coats. Nice warm coats. One coat made its way to the mother of six in my daughter’s first grade class. The mom was thrilled with the gift. A gift she had not asked for but a gift that she very much treasured. A gift that I bet she is wearing today, in Birmingham on this snowy December day.

You see, you can still find goodness and life in processions that are left untouched in our closets. Things we collect but really do not need. This coat hung forgotten amid the other coats in the closet at Brookdale. Now it has new life on the back of a mother of six. She wears it proudly and no doubt looks beautiful in her new long wool coat.

Old is not forgotten. Memories are still alive in our mind. Dad looks at the Christmas tree and remembers memories of trips he once took. He remembers packages under the tree and bikes that he put together at midnight.

Old but not forgotten. Gifts give new life to each of us. New memories to be made.

What gift will you give this Christmas season?

I’m still looking for the gift of patience. They are old but not forgotten.

It’s Christmas time, the most wonderful time of the year. . .

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Bumps in the Road

canstock8536967I am amazed each time I learn of a friend that has a parent living with dementia. I am also struck by the words “living with dementia.”

How do you live with dementia? Do you have a choice?

I ran into an old friend tonight at the Pig. We played the catch up game and then she asked how my parents were. My pat answers is “Fine. About the same. You know how it is.” Then I said, actually you do not know how it is and for that I am very thankful.

If you do not have a loved one with dementia you likely do not know the roller coaster that families with dementia are on EVERY day. There is no such thing as a normal day.

Not any more.

My mom lives with dementia every day and yet every day is a gift.

I am somewhat sheltered from the roller coaster because I do not see my dad every day. When I see him, he knows who I am or at least knows that I am related to him. Some days he thinks I am my sister but I will take that.

This week my dad has told my mom that he is ready to die. That must be awful for her to hear. After all, they have loved each other for a lifetime. The good news is that my dad’s attempt to die consists of him holding his breath. Fortunately that does not work!

This week my dad has thought he was a general in the military and refused to leave the apartment because he was out of uniform. This was only a problem in that it caused my mom to miss her hair appointment. I suggested that next time they make the “general” get in the car out of uniform and encourage him to wait in the car while she gets a much needed hair cut!

This week my dad has decided not to shower on a regular basis and for that matter he has refused to change certain articles of clothing that really should be changed each day. I guess a rash will eventually set in and a shower will happen. I hope the shower happens before the rash . . . stay tuned!

This is living with dementia. Sometimes you do not get a choice.

We do not get to decide when we die and I think that is a good thing.

Some days are bad, some days are good and many days are less than perfect. In my house we call these less than perfect days as “bumps in the road.”

What would life be if we did not have bumps in the road?

We would not get to stretch our imagination. We would not get to talk to our siblings many many times a day. We would not get to council one another and learn from one another. We would not get a chance to start over and give life another try.

While I do not like this particular bump in the road, I am certainly glad that holding your breath does not grant you a trip to the pearly gates. Only the good Lord knows when we will get to take our last breath and for that I am thankful.

I know that my dad is tired and I am certain that he knows that his head is confused. I know that he and “we”Bump will have many more bumps in the road with dementia.

I am thankful for the ladies that help my parents each day and I am thankful for the people that walk this bumpy road with us. Some people have shorter roads than others but it is not for us to decide when our road comes to an end.

So my friend at the Pig, my parents are good. Life is the same.

The general needs a shower but that is just a bump in the road.

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.