What is in your medicine cabinet?

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I wake up with a headache and I go to my medicine cabinet for two extra strength Excedrin and get on with my day. I do not think twice about taking something for my headache.

When you have dementia your medicine cabinet gets a little more complicated. Unfortunately the few medications on the market for Alzheimer’s do not work for my dad. Not only do they not work, he has every side effect listed on the package insert. Literally all of them!

Like many people my dad’s age, he takes a lot of medicine: heart medicine, blood pressure medicine, vitamins and a sedative  . . . just to name a few.

Not only has my dad been cursed with dementia, he also suffers from depression. I do not know a lot about depression but I know that it is common. I know that it is a form of mental illness and I know that it is nothing to be ashamed of! I bet we all know more people than we can count that suffer from some type of depression.

So why am I writing about medicine? I am not a doctor or a pharmacist but I have learned a lot about medicine and its impact on my father.

For reasons unknown to us, my dad does not tolerate antidepressants. I do not know if the medications reacts poorly with the his brain disease or if it is just another chemical reaction that happens with my dad.

The depression that my dad suffers from causes him to cry and feel worthless. It is pitiful to see and because of his dementia he is not capable of understanding that he is actually a wonderful man who had a very successful career.

My mother has a very difficult time watching my dad as he sinks into a pool of self-pity. She wants to help him and the only thing she knows to do is call his internist and get an antidepressant for him.

Good move? Bad move?

Hard to say. He does not cry as often and that is certainly a good thing.

Now my father wanders. That is a bad thing.

You see, the antidepressant may be helping his outlook on life but the chemical reaction in his body makes him agitated and causes him to want to roam. My dad is very fragile and not too steady on his feet but when he decides to roam he can be pretty darn quick! When he remembers, he walks with a walker but one night two weeks ago, he managed to walk down three flights of stairs and go stand out in the rain. Funny how he can get “the hell out of Dodge” when he wants to!

So should my dad be taking an antidepressant? It all depends on who you ask.

My mom confided in their internist and he carefully prescribed a medicine that should and may be helping my dad’s depression. We encouraged my mom to contact his neurologist to see if she agreed with the new prescription but I am unsure if that conversation ever took place.

It is so important to know what is in your medicine cabinet and how one prescription might interact with another medication. If you are like me and do not have a medical degree or a vast knowledge of prescriptions, consult someone who does have this knowledge.

Do your homework. Don’t trade one side effect for another.

Excedrin may help my headache but it might not do a thing for yours.

 

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For Better or For Worse

 

pexels-photo.jpgFor better or for worse. We all say those vows when we get married and we all pray that the “better” last a life time.

For better or for worse. How bad can it get? He gets a bad cold and acts like he has the Black Plague. That is bad definitely; worse than “better.”

For better or for worse. Years of raising healthy children. Watching two daughters marry and have children. Traveling the world and enjoying remarkable food from the east coast to the west. Taking pictures with kangaroos and sailing on elegant ships. The “better” is so much more fun than the “worse.”

Soon my oldest daughter will say those words to her groom and they will start a life together filled with lots of the “better” moments and hopefully the “worse” moments will be little things like burning supper or not having enough money for a night out. As their marriage goes on they will look back at those “worse” moments and laugh because they will be some of the best times of their lives. These “worse” moments will pave the way for the fabulous moments that will fill their happy married life. I cannot wait to see the life they build together.

At the same time, I am watching my Dad decline and wondering if we have any “better” moments left.

Five years ago, my dad watched my mom’s health decline. She lost the ability to walk and their life style changed. My dad mourned the change in their life style but he still had my mom to talk to. They could no longer travel but they had a life together and they made the most of it.

Tonight it is a cold and wet April night and my dad is standing in the rain asking for help. HELP! Any kind of help. Just help!

My mom is there and she can help him but that is not the help he wants. They call me on the phone and I can help, but not the kind of help that he wants. He wants HELP. Help that unfortunately none of us can give him.

This is definitely the worse part of for “better or for worse.”

My mom mourns the loss of my dad and he is still here. Sort of.

His eyes have grown vacant. The life has definitely left his eyes but in his heart he longs for his family. We are here but we cannot seem to reach him.

This is definitely the worse part of the for “Better or for worse.”

I remind my mom that he does not do this on purpose. Fussing at him will not bring him back and it will not help the situation.

Tonight I mourn the loss of my dad. He is still here but it is just not the same. He will likely not be part of our daughter’s wedding celebration this summer.  But that is OK. It will still be a joyful day. A day with family and friends. A time that we will all renew our vows and we will all pledge our love for better or for worse.

I am so thankful that we have so many “better” moments that we will treasure forever. I may be mourning the loss tonight, but tomorrow is another day. Hopefully everyone will get some rest tonight and with any luck . . . Dad will have a good day tomorrow.

Remember, we cannot let the disease keep us from loving the man. I may not be able to see him in his eyes any more but I know he is in there somewhere.

For better or for worse.

Things Are Changing

pexels-photo-414160.jpegThings are changing.

The time has changed and it is now dark when I get up in the morning and it is still light when we finish dinner. The days are getting longer.

The seasons are changing. Winter is finally going away and the cherry trees and the large snowball tree by my mailbox is about to burst into bloom. I love spring! Or maybe I should say that I love spring once the pollen goes away.

Things are changing with my dad too and I have to admit that this makes me sad. I learned last week that he now needs help getting dressed. This is especially hard for me to see because my dad was a very sharp dresser! He loved clothes. He loved to order a suit and from the tailor and then spend an hour or more looking at the ties before selecting just the right one to be added to his collection. For now, the sitters select his clothes and help him put his clothes on in the right order.

I visited today and noticed that he struggled searching with some words. I am not sure if this is my dad getting lost in the story he is telling or is it the disease that is scrambling his words in his head? I chose to believe that he is just getting lost in his story and it is not the disease taking away his words.

As much as I want to help my dad tell his stories or help him come back to the present, I simply meet him where he is. It is so much easier to agree that it is hard to clean the bathroom sink when the whole platoon has to share the same small space. It is easier to just pretend that I am anxious to see the new band uniform that is apparently coming for me this week. I try to meet him where he is. I will admit that I am slightly curious about the bad uniform he thinks I am getting this week.

Of course it is so much easier for me to play along because I am not there with him all day. I am certain it is exhausting for my mother. After all she is in the present watching her husband travel back in time. A time where she did not exist.

It is easy to think that my mom is just being difficult for not “playing along.” Sometimes I get frustrated with her but I have to remember that I have not walked in her shoes. No one has. It is far easier to tell someone what they should do than to walk in their shoes and live their life. A life where you do not know if your spouse knows you or not. It must be awful. I need to remind my self this daily!

As I have said before, dementia and Alzheimer’s seems to be everywhere! I have a guilty pleasure . . .  I hesitate to tell you what it is . . . I enjoy the mindless escape of watching a certain tv show that comes on in the middle of the day. I won’t name the show but I KNOW that some of you watch it too!!

On this certain show, they have brought back an old character and it is very apparent that something is not quite right with him. Well, I immediately knew what it was and I was devastated. Not because this fictional character had been given a script that says he has Alzheimer’s but because it is just another reminder that this disease is everywhere and it  weaving its way into everything we do.

There is no escape. Even my guilty pleasure has touched part of my world and I am NOT HAPPY ABOUT IT!

Things are changing and one day we will find a cure for this awful disease. I believe it will happen and I believe in our lifetime. I believe that there are children in my community that will go into research and they will put an end to Alzheimer’s.

I believe that things are changing.

 

Heavy Baggage

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Why do I write about dementia? I write because it is an outlet for me. It is easier to write about it than talk about it sometimes. It also saves my friends from having to hear me talk about it all the time.

So if you do not want to hear about dementia, stop reading now!

I write as an outlet not for sympathy. I do not want sympathy or a pat on the back. My journey is “my journey” but everyone has a journey of their own. I am not a better daughter or a better person because I live with a parent with dementia. I am just like you, I just happen to have a father with dementia.

I just write because I can and sometimes I can offer some advise that might help someone else. Thank you for visiting my blog! I hope you find something useful in this post.

Dementia comes with a lot of baggage. Baggage for the person with dementia and for the family of the person with dementia. For my mom, she struggles with loneliness. Her partner in crime is no longer the same person. They can no longer travel, although it is not solely because of my dad’s dementia. She longs for the person that my dad use to be and she desperately wants him to the person that he was. It is a struggle.

My mother wants to offer my dad some kind of independence. She thinks that if she lets him do things that he once did it will make him feel better about himself.  The dementia will some how disappear. So she lets my dad do things that she should not be letting him do by himself . . . like go the bathroom alone in public.

It sounds like a really easy task that cannot go wrong . . .right?

We are lucky that nothing really bad has happened but how long can our luck hold out? What can really go wrong with this little taste of independence?

Well, the absolute worst thing that could happen is that he gets lost and wanders off. A simple trip to the bathroom in a part of town that use to be familiar is suddenly unfamiliar. My father could become the man on the news and we could be forming search parties to bring him home.

What if someone sees my father as a fragile individual and takes advantage of him or worse, hurts him! Unfortunately there are people out there that prey on people like my father. What if someone offers to help him but their intentions are really not good?

What if he walks across the parking lot and misjudges the curb and he falls . . . oh wait! That did happen!!

My mom misses the person that my dad once was and she wants to bring him back by letting him be independent in these little ways. Unfortunately these little “opportunities” can be very dangerous.

It is hard to see the person that you love and have lived with for over 60 years disappear before your very eyes. I am sure that I would try to do everything that I could to bring a tiny bit of my loved one back to me.

I’m on the outside looking in. I do not live with my dad like my mother does. I can visit and be happy and when I grow tired, I can leave and go back to my house.

My baggage is light. Her baggage is heavy.

But from where I stand, I see all the danger involved in dad going to the bathroom in public by himself. From the outside, I have to tell my mom that she cannot let him cross a parking lot to go into a store to find the bathroom while she waits in the car. From the outside, I have to remind her that dad is easy prey for someone who is up to no good. From the outside, I have to explain to my mom that with dad’s failing eyesight he is more likely to misjudge the curb and fall and if he falls he could break something . . . like a hip!

I have lightened my load and added to my mom’s baggage.

I want to fix my dad and in turn give him back to my mother. But I can’t.

All I can do is sit on the outside and look in. I can try to lighten the load for my mother and I can remember that she is lonely.

It is important that we lighten someone’s load . . . if we can.

Energizer Bunny

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It is hard to believe that 2018 is well under way. From my standpoint, not much has changed and that is a good thing. My parents still have doctor’s appointments and they still run late to almost everything! After all, an appointment time is a mere suggestion as to when you might want to show up! Right?

Many of my friends have lost a parent in 2018. I am always amazed when friends lose a parent so quickly and my parents are still hanging in there. Don’t get me wrong! I am thankful that I can still pick up the phone and call my parents but there are times when I am amazed that we make it from one crisis to another and everyone is still standing . . . or sitting in their chair!

My husband says my parents are like the energizer bunny and he might be right.

So far in 2018 we have survived the flu and did so without a hospital stay. My mom has had a total rebuild of her wheelchair even thought she really wanted a new chariot. We have survived multiple full moons, blue moons, blood moons and an eclipse. Both parents have taken a spill and have been lifted to their feet by the Homewood Fire Department. No one was injured in the spills including the firemen.

Dad is keeping us on our toes. His memory is more sporadic than it was a few months ago. His congestive heart failure and lack of general activity (oh and a bowl of Butterfingers) has meant a new wardrobe for him in 2018.

As we dream of warmer weather and Spring flowers we are getting ready for a summer wedding, summer jobs, summer school and tax returns. I am up to my eyeballs in paper and paperclips!

I have had several friends learn that their loved one has Alzheimer’s in 2018. It breaks my heart to have friends join me on this never-ending ever twisting journey. I do not know if it is harder to lose a parent quickly and unexpectantly or one brain cell at a time.

I like to start off a new year with a clean slate. For me, this means cleaning out the closets and the attic and parting with the things that are clogging up our lives. For those of you learning that you are entering 2018 with a parent with dementia, it could mean meeting with lawyers and tax planners. If this is you, please do not waste any time contacting people who can help you start putting things in order. Build your team early. It will make the journey a little easier.

Begin this new journey by putting your name on EVERYTHING, even if you have one parent that is still able to run the household. Add your name to services (water, electric, gas). Add your name to safety deposit boxes and bank accounts. Make a list and check it twice.

In 2018, I have found that some companies that cater to the older generation are not always honest with their billing system. I do not think they are intentionally shady but I do believe that they are in a better position to take advantage of my parents. If you pay your parent’s bills keep a close eye on companies that offer handicap products. I found that one company sent me three bills in 10 days all for growing balances. Not once did they give me credit for a bill that was paid even though I had talked to them to know that they did indeed receive my payment. I did not pay each bill. If I had paid each bill I would have paid over $600 when they really only owed $245. This company was planning to keep the over-payment until an insurance claim was settled. Let me add that the person that I spoke to at this particular company was very helpful and helped me get to the bottom of this billing nightmare. Keep a paper trail and have a good banker on your side and remain calm while on the phone with the billing department. This is not always easy to do but cooler heads usually prevail.

I do not know what 2018 has in store for me but I am hopeful that there will be more tears of joy than tear of sadness. I am thankful for my team and I am willing to help you build your team.

2018, these energizer bunnies are ready for anything!

Sitting In A Bubble

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It was an incredible day. Everyone was on their best behavior. Packages were opened. Festive drinks were served and the meal was wonderful.

Unlike last year, the oxygen tank was not on empty and the sitter showed up at just the right time. It was a beautiful celebration of Christmas. I am so thankful for such a wonderful day and happy memories that were made.

And then we entered the bleak days of winter.

You know they are coming and you prepare the best that you can. You get your flu shot. You wash your hands. You wish you had bought stock in all things clean: Lysol, Mr. Clean, Clorox wipes . . .  you get the idea.

The day after Christmas you get the phone call that tells you how much they enjoyed the day before. Something is a bit off but you chalk it up to the parents just being tired. After all, we had two days full of activities. Maybe a little rest and everyone will be better.

Or not.

Now we are calling doctors, getting antibiotics, pushing fluids and staying in bed. Not just one parent but BOTH.

I told my sister that we just need to keep them in a bubble until January 1st! Why you ask? On the first of January their new and improved insurance policy takes effect. It will be a wonderful policy! A policy that pays for everything! No deductible to meet and mucho days in rehab/skilled nursing.

Just sit tight in your bubble until January 1st!

If you have not looked at your parents’ insurance plan in a few years, pull it out and dust it off. Their plan may be just what they need or as I found out in February of 2017, it may have been perfect 10 years ago but not so perfect with two aging parents with all kinds of health issues. Do your research and make a plan. It might just be time to make a change or two.

So while we have my parents sitting safely in their home, wrapped in bubble wrap and taking antibiotics and occasional breathing treatments we pray that we can keep them out of the hospital and that we keep our sitters healthy too! We are passing out protective masks to the ladies as I type! We are prepared to hand out Tamiflu if necessary!

It is important to know that a person with dementia does not always receive medication well. Some medicines that had no side effects five years ago will totally throw them for a loop now. We try to stay away from steroids with my dad because they do awful things to his brain today. Medicines that MIGHT be hard on the tummy WILL be hard on the tummy now!

So as we wait for January first we also know what happens this year on January 2nd . . .

A FULL freaking MOON!

Cheers to 2018!

 

Call First!

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Christmas is coming!! Are you ready?

We are down to the last minute details but boy does my list of details seem to be growing!

While everyone is busy getting ready, adult respite programs are on vacation! We are only three days in to the “vacation” and we already miss them terribly. We truly understand that distance makes the heart grow fonder!

As you prepare for the holiday season, remember those that are trapped inside and remember those that are caring for loved ones with dementia. For that matter, think of those of us taking care of a loved one that is taking care of someone with dementia!! Make a phone call to check on those friends. Remember that it will be two (plus) long weeks before adult respite programs are back from “vacation.”

Today my dad is celebrating the Christmas season in his Christmas suit!! Funny that his Christmas suit looks a lot like his birthday suit! Oh my!!

To be totally honest, he is not in his birthday suit. He is in his fruit of the loom suit! But who wants to see that? Not his daughters or his grandchildren for sure!!

So while you are checking on the shut ins . . . call first!! You never know what might be on the other side of that door!!

Merry Christmas!!