Love Heals All Things?

 

Love heals all things. Really? My first thought was no it does not! It sounds good but it does not heal all things!

I left church shaking my head. Love does not heal all things. I loved my Dad and he was not healed. Love does not heal all things!

I have been meaning to sit down and write one final post but my heart has just not been in it but then I went to church. I told myself that I would sit down tonight and tell you how love does not heal all things!

I pulled out my computer, searched for my site and then it hit me! Love does heal all things but not always the way we want them to be healed.

You see, after many weeks in the psych ward in early 2019, my Dad’s medicine was finally regulated but his physical condition had changed drastically. Dad could not come home.

As I said in previous post, we had to find a skilled nursing home with a memory care unit to care for my father. I could not bring myself to do this research. I could not physically go out and find a place to leave my father. Fortunately my sister was able to do this and we thought that the perfect place had been located.

We packed dad’s belongings and transferred my Dad to The Oaks in Bessemer, Alabama. The long driveway up to The Oaks was peaceful. We thought this would be a safe and loving place for my Dad to stay.

We were wrong! In the brief time that he was there Dad continued to decline (which we expected because of the disease) but so did the care that he received. We not so quickly realized that The Oaks was keeping my Dad over medicated and leaving him in his room to fend for himself.

This did not work. After multiple falls in a week and three staples in his head we scrambled to bring Dad home. We had to get him out of there… and we did.

We made all the arrangements to add additional care to bring Dad back to their apartment in the independent living section of the retirement community.

Dad came home on Monday, March 4th. He was heavily sedated, thanks to The Oaks, and because his system was shutting down it took much longer for his body to process the medicine and get them out of his system. Tuesday was quiet and Mom was very happy to have him home.

I received a call from my mother just before 8am on Wednesday, March 6th. This call told me that my father was in respiratory distress and that I should come quickly.

Lots of thoughts run through your head when you get a call like this. March 6 was Ash Wednesday and I had plans to go to church and get ashes. I had plans to start reading a 40 day devotional that I had been looking at for 2 weeks. I had plans and these plans did not include watching my father die.

My plans changed.

There was a flurry of activity when I arrived at the apartment. Sitters were tending to both my Mom and my Dad. I cannot remember if my sister was there before me or not. The Hospice nurse was there and the Hospice chaplain was on his way. A dear friend had contacted one of our priest and she walked in mere moments behind me. The place was bustling and everyone was helping us prepare.

We were preparing to love my Dad into heaven. We were given ashes by my priest. We said prayers, held hands and told my father that he was a good man, a good father and a good husband. He could go to heaven now and we would be fine. We would care for Mom and we would care for each other.

Dad died just after 12:30pm surrounded by his family.

Love had healed all things. . . Not the way we had planned it or even prayed for it but Dad was finally healed.

I am so grateful. I am grateful for the people that I met on this journey and for the people that propped me up. Some of them are still propping me up.

Today was tough. It was my first Father’s Day without my Dad here on earth. I made it through the day  – or at least I have almost made it through the day.

I was worried that I might not be able to sit through church today. Not because of the sermon that I clearly did not understand until tonight but because we were to sing Good Good Father during the offering. I kept telling myself to think of my daughter’s wedding where this song was also sung. I kept biting my lip trying to keep my eyes from watering and then it happened just as we stood up to sing. I spilled a cup of water! PERFECT! I found myself scurrying to clean up my mess so I never really heard the song. I never had to sing this beautiful song on Father’s Day.

I think this was a God thing! I think it was a way of protecting me and giving me something else to think about.

Love does heal all things. I now believe that.

My Dad is finally healed.

I will close by saying that if you are loving someone thru Alzheimer’s do not do it alone. Find a support group. Heck! Start a support group!

Love heals all things but sometime you need a little help.

 

***Please excuse the typos. This was a tough one to write and I cannot do the normal editing that I have done in the past. Good luck on your journey and if I can help you in any way, please feel free to reach out to me. ***

 

How Do You Know?

How do you know when it is time for memory care?

That is such a hard question. Is there ever a “right” time for memory care?

For us, we realized we needed memory care when my dad could no longer be contained within the walls of their apartment in independent living. We had purchased a three-part door chime to let us know when Dad was on the move. A small box attached to the door and a smaller piece attached to the door frame and a third piece plugged into a nearby electrical outlet. It was perfect! Whenever anyone opened the door they were announced with a loud “ding-dong.” If Dad decided to turn off the chime a lovely siren went off that made everyone run for the hills! The door chime was an excellent purchase from the online Alzheimer’s store.

Another deterrent was added in the fall to keep Dad in the apartment. Amazon offers lots of contraptions to baby-proof or in this case elder-proof the door. The door handles in my parent’s apartment are more like levers instead of the old fashion doorknobs. No worries! Amazon had elder-proof contraptions for every kind of doorknob or handle. It quickly became too complicated for Dad to get out the door. I suggest you look into this before you consider adding a keyed lock to a door. You must remember that you want emergency personnel to be able to access the apartment.

So if you can keep your loved one in . . . why do you need memory care?

For us there was more to consider. We wanted Dad to be safe and his disease was advancing. We had round the clock help but some days this was not enough. Keep in mind that our wonderful sitters were caring for my Dad and my Mom, who is confined to a wheelchair.

So the search was on for the perfect place to care for my Dad. We were looking for somewhere safe and clean and happy and somewhere that would treat my dad with dignity and grace.

Let me tell you . . .THERE IS NO SUCH PLACE!

So what do you do? Well, after you pray about it and cry about it you put on your big girl (or boy) pants and you look at every place available in your area.

I can tell you right now that you will not find a place that checks all of your boxes. I cannot tell you what you will have to sacrifice to find the perfect place.

As you start your search, you will need to understand that there are levels of memory care. I did not understand this initially. There is a huge difference in memory care and skilled nursing memory care.

Some of the “happy” memory care units will only take a person in the early to mid stages of Alzheimer’s. We did not need this type of care for my Dad because we could provide this type of care at home.

When you move to skilled nursing memory care the “happy” part fades into the background…FAST. Prepare yourself for patients sitting in the hall or in front of a TV with the most vacant stare you have ever seen. It is like something from a scary movie. You have to look hard to find the “person” trapped inside the body in front of you. It will tug at your heart.

I know that when my Dad was in skilled nursing memory care I felt like the other patients had “empty eyes.” It was as if they had left their bodies behind. But I had to remind myself that I did not know these people before they came to this facility. I did not know them as a teacher, a lawyer, a banker or a doctor. I just knew them as a body in the chair trapped in front of a TV airing The Wheel of Fortune. Maybe if I had known them before I would have seen a different person in front of me. Maybe strangers saw my father as a man with “empty eyes.”

As you visit facilities in your area, plan to go more than once. You will likely need an appointment to visit the first time. This means they know you are coming. They are ready for you. You should allow time to go back to your “favorite” facility unannounced. See what they look like when they are not expecting you.

Look at the food. Taste the food if you dare . . . I mean if you can. Ask them about activities. Will the patients sit in the living room in front of the TV all day or will they offer puzzles and crafts? Is there an outside area that they can sit in? Ask about how they deal with a difficult person. This is a very important question!

My Dad was wonderful and kind before Alzheimer’s. He was easily irritated in the later stages of his disease. If this describes your loved one as well, you need to know how the facility will handle them. Chances are they will medicate them. Chances are they will medicate them a lot.

So ask questions. Ask a lot of questions. Pray about your decision. Ask everybody you know about the facility you are considering.

Know that you will likely have to wait for a spot in the facility you finally decide on. If a facility has lots of beds available, you should wonder why they have so many beds available.

You should know that it is harder to get a bed for a man in a memory care unit. My Dad was one of two men in the memory care unit we selected.

You should know that you might make a mistake. We did. We picked the wrong place for my Dad and I will make it my life’s mission to tell everyone who ask that The Oaks is not a good facility for skilled nursing memory care.

You should know that there is no perfect place but you will do the best that you can.

You should know that if you make the wrong decision you have to forgive yourself.

You are doing the best that you can.

 

Curve Ball

Just when you think you have everything under control, you get a curve ball.

We got a curve ball!

I feel like we have planned for everything or at least 95% of everything. But in the last four weeks, my sister and I have realized we still had a lot to learn.

Unfortunately I learned one more thing that you cannot do with a Power of Attorney (POA). Years ago, I learned that you can sell your parent’s house with a POA but you cannot sell your parent’s car. I thought this was ridiculous! I have a beautifully bound (and expensive) manual which holds the Power of Attorney documents for both of my parents and health directive documents but a car dealership prefers (actually they demand that you use) a POA document that you print off of a computer . . .  for free.

This week I learned that even though the POA document specifically states that I have the power to direct changes with Social Security, Medicare and Medicaid the Department of Social Security will not accept my beautifully bound document. They would prefer that I get a letter from a physician that states that my father has Alzheimer’s and that he can no longer handle his finances. The Department of Social Security wants me to be my father’s Representative Payee. I believe this is a term that Social Security made up!

A Representative Payee is a person that Social Security appoints to handle someones social security benefits.  I googled this! Now I am not trying to change my dad’s payments or where they are direct deposited. I am simply trying to change the mailing address for the tax documents that have to be mailed for his benefits and his Medicare. I am trying to simply change an address!

I have put my beautifully bound POA back in the cabinet and instead I have a form printed off the computer  (Form SSA-787) and completed by a physician and a memo from the bank. I get to go once again to the Social Security office and try again to change my Dad’s address. I like to think of it as a field trip to a relatively new and shiny building in a neglected part of Birmingham. I will let you know if I am successful.

My advise to you is to change ALL important addresses to your home address while your loved one can still speak for themselves. I should have used my address the first time we moved my parents but then again I did not think I would move them again.

Enough about that.

The next curve ball is related to Memory Care.

We decided to move my parents last fall because we were looking for the best Memory Care our town had to offer. Unfortunately it was no longer in the facility we selected in 2015. Things change FAST in this market. We moved my parents to a different community because we were no longer happy with the community they were in. YOu really have to stay on top of the changes at each facility.

In our mind, we were looking for excellent independent living and excellent memory care and we thought we had found it!

Just before Christmas, it became apparent that my Dad needed to be in memory care both for his safety and the safety of my mom and our sitters. We thought it would be a relatively easy move.

Nope.  Nothing easy about it!

As it turns out my dad was not able to go to memory care because he became agitated and when he was in this state it was hard to be around him. So hard to be around him that the memory care that we so carefully selected said “No thank you!”

BAM! We were hit right between the eyes just days before Christmas.

Now what? He can’t stay in the apartment with my mom and he cannot go to memory care down the hall. Much crying and cussing followed and my Dad was sedated so that we could have time to figure out a plan….again.

Fast forward to January and we added a trip to the locked geriatric ward to get Dad’s medicine adjusted so that he could either go back to live with our mother or go to the memory care that we selected.

Fast forward three weeks in the geriatric ward. Dad’s medicine has been modified and he is ready to be released. That was great news but the man that walked into the hospital three weeks before was not the same man sitting in front of us now. The man, my father, could hardly hold his eyes open and his head up. He could no longer feed himself or dress himself or clean himself or walk unassisted.

BAM! We were hit between the eyes once again. Now what?

The hospital explained to us that Dad was likely in stage 7 of Alzheimer’s and he was receiving 100% care from the nurses. We needed to look for skilled nursing for my Dad. The beautiful home that we had moved my parents to in November did not offer skilled nursing. We never thought my Dad would need skilled nursing. We thought memory care would be the last stop for my dad.

So the hunt began again. The search for the best place to care for my dad. We needed a place that would love him and care for him and be relatively close to our mother.

We are tired of these curve balls and I have never been a big fan of baseball anyway.

 

Remember, a person with Alzheimer’s is not giving you a hard time… they are having a hard time.  author unknown

 

 

The Imperfect Christmas

Life is not perfect and I believe that is a good thing.

Over the holidays, I was reminded of Christmases past that seemed perfect in my memory. I remembered the hustle and bustle of shuffling between our home and the homes of my grandparents and my aunt. I remember going to the candlelight service at my church and I remember waking up before the crack of dawn to see what Santa had put under our tree. As if the gifts under our tree were not enough, we continued to open gifts at my grandparent’s house and then years later at my aunt’s house. I remember fancy glasses with orange juice and chicken salad sandwiches, without crust, all before ten in the morning! It was all perfect or at least that is the way I remembered it.

This year I was prepared for anything but perfect. My sister was out-of-town with her husband’s family and my parents were coming to my house and I was not ready for it!

I was dreading it so much that I could not bring myself to put up all of my decorations. I put up enough for it to look like Christmas but in my mind I was already packing it away to put Christmas far behind me.

This year, Christmas was going to be anything but perfect… but then something happened.

My son asked me when I was going to put the rest of the decorations out?  I could not believe he actually noticed. You see, I LOVE Christmas and I thought that all of these years I had decorated my house for myself. Now I know that my children noticed my decorations and that they too had a love for Christmas so I better get my act together and get ready for a perfectly imperfect Christmas.

I decided to slow down the pace of our day. Since my oldest daughter and her husband would be traveling from Huntsville on Christmas Day, it made perfect sense to start our day a little later. We still had time to open our gifts as a family but I told my parents to arrive at my house later. You see, my dad was always an early riser and he would often be at my house to see his grandchildren open their gifts. He would often arrive before the kids were even awake!

But this year, my Dad’s Alzheimer’s had progressed. More times than not, he does not want to leave his place. Dad had experienced many bad nights and we had no idea what Christmas would look like. We did not even know if he would participate in Christmas this year.

I am happy to report that Christmas happened at my house and my Dad was part of it. Instead of planning our day according to the way we had celebrated in the past, we planned our day around what would best suit my parents. We still enjoyed a wonderful Christmas meal together and we still opened our gifts together. We just moved all of our plans back a few hours and included my parents in fewer activities but still important activities. We built-in opportunities for Dad to leave if he became to restless. We set up our day so that he would be successful and not be stressed.

We tried to build a perfect Christmas out of a very imperfect situation.

It was a success!

Now we are moving on to 2019 and we have no ideas what it will look like but I can tell you that we are two weeks in to 2019 and it is not perfect.

Far from it . . .

Grace

I was fortunate to attend a wonderful seminar this morning at Canterbury United Methodist Church in Birmingham. The speaker was Jolene Brackey and the topics was Creating Moments of Joy Along the Alzheimer’s Journey. (This is also the name of her book so run out and get a copy!)

Jolene was delightful and I know that I left the seminar better than I was when I arrived. She offered a lot of information that I was already familiar with but it was given to me in a fresh new way. It was delivered with laughter and sympathy and kindness. I got the feeling that she had walked in my shoes or at the very least she was walking with me in this journey.

John Claypool, the former rector of my church, St. Luke’s Episcopal Church, loved to preach on grace. Through his many sermons we were reminded of the free and unlimited favor of God, also known as grace.

God gives us grace every day. He forgives us for our sins and reminds us that we can never lose favor with Him. His favor is eternal.

Jolene Brackey told a room full of caregivers to give ourselves grace. We deserve it and we have certainly earned it over and over again. We need to give ourselves grace to pass thru the moment.

And if you are a caregiver, you know the moments I am referring to.

It is OK to take a break, both mentally and physically. As one person said today, put yourself in “timeout.” Use a timeout to breathe and regroup. Count to 10 or 100 or whatever you have to do to take a break from the situation at hand.

Give yourself grace.

Being a caregiver is hard. As I have said many times, I am a caregiver from afar. I do not live with my father and I am so lucky that we have kind sitters that help my parents every day. But I get the phone calls. I see the lapse in memories and I experience the loss of my father every day.

So when I am spent and I have had enough, I need to give myself grace. It is OK to be done! It is OK to put yourself in timeout for a little bit.

Give yourself grace to pass thru the moment. You won’t regret it.

Read the book Creating Moments of Joy Along the Alzheimer’s Journey. You won’t regret that either.

Can I Put A Tile On That?

I remember when my oldest daughter was in elementary school and I use to swear that she would lose her head if it were not connected to her body! She lost everything. Of course she would never admit to losing it, it was simply misplaced.

Checking the school’s lost and found became a regular stop when I entered her elementary school. I was forever grateful for the moms that spent countless hours organizing the coats, the water bottles, the purses, the notebooks, the lunch boxes and all the other things that were casually cast aside each day.

Thankfully she outgrew this! Although right now she and her husband are looking for the bolts that go in the bed that was temporarily put in storage. Sigh.

Now we have entered this “lost and found” stage with my father. Unfortunately we cannot retrace my father’s steps because he has no idea where he has been.

So far he has lost a wallet, car keys, a hearing aid and now the keys to their home. The wallet has been gone for a few months. The credit cards have been canceled and the money . . . well that is gone. The car keys have been located. They were in the bottom of his closet. The hearing aid has not turned up yet but we are confident that it is in their home somewhere. Now they are looking for the keys to their home.

My dad has a fascination with keys. Maybe it is the fact that they are shiny? Yesterday he decided to add my mom’s key to his collection. Why she did not retrieve them immediately is beyond my comprehension. Dad kept up with them all day and my mom had to untangle the cords to separate the keys that evening. Apparently it was a big mess and she put them on her bedside table to tackle again later.

You guessed it! Dad found them and he has put them in a safe place. Of course he has no idea where that safe place is!

Alzheimer’s will certainly keep you on your toes!

If you do not know what a TILE is, google it! It is a wonderful little square that you can attach to many things! When we found the car keys, we attached a TILE to the key fob. We replaced the wallet with a new wallet and tucked a TILE into one of the credit card pockets. We told my dad it was a security feature that would let us know if someone ever took his wallet.

Unfortunately you cannot attach a TILE to a hearing aid! He might look a little funny with a square dangling from his ear. When we find the house keys, we will add another TILE to this key chain.

The TILE is linked to my mom’s iPad and her cell phone. Each TILE has its own signal and when we cannot find his wallet we simply push the locate feature on for this TILE and listen for the beep. It is amazing and I wish I had invented it!!

I highly recommend that you go to Amazon and order a TILE or order many TILES. Put them on everything.

Everything!

It will save you a lot of frustration.

And if you figure out how to put one on a hearing aid . . . let me know.

I want to put a TILE on it!

 

What is in your medicine cabinet?

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.

 

For Better or For Worse

 

For 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

Things 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

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.