A job like no other

Dear backhomeagain,

I am just tuning into your post for the first time and have not gone back to read your introduction, but from what I have read my guess is dementia/alzheimers.  Am I correct?  If so, I was my mother's caregiver for ten years and would be happy to share the lessons that my God walked me through.  It's a hard road, but now that I'm on the other side, I wouldn't have changed it for the world as I'm a much better person than I ever was before.  My only wish is that I had gotten plugged into available resources earlier in the journey.  That would have spared all of us a lot of distress.  PM if I'm on target and I'll be happy to share.

Thank you for doing this. I hope it is the outlet you need and the education we all need!

What you are dealing with is a growing problem for so many.  We can all listen and support you here as best we can.

Hope you are sleeping!!!

Yes Caribbean Wantabe it is dementia. something I would have never guessed by parents would have, even though my grandmother, on my mothers side had it before her passing at the age of 93 while under my mothers care right here in this home.
Mom always would tell me when I called every Sunday after Church to speak to her that all she wanted to do was beat her mothers age before passing. She has done so.

My mom is an extremely strong woman. She has buried her mom, 2 brothers, and 2 of her sons, my brothers, and has been the backbone of this household since i can remember.
Quite frugal with her money, she would pick up change on her travels to and from church in New Jersey and be so proud of finding a few pennies each day. She would place her findings in large coffee cans. I can't say they were the cause of her paying off her 30 year mortgage in 18 years, but I have no doubt it helped a tad bit..... lol

Here in the Dominican Republic my mom was a nurse, and my dad was a shoe salesman. Upon arriving in the states, my mom became a maid for a wonderful family on Park Avenue in Manhattan in NY City. My father became a factory worker who slaved, and yes I mean SLAVED, for 12 hour days, for years, while putting us through private school.

Planner, it is so sweet of you to wish me some sleep, but no I'm not one that can sleep during daylight hours freely. I have tried, and tried, and tried, to no avail. I just toss and turn and after a short while get up out of bed.  I do talk a mean talk and always take on that challenge of trying, but I've rarely won.
Scooters and motorcycles were few and far apart and I am sure I would not have been able to get any sleep even if able.
Someone dear to my heart who kept us both up most of the night was able to sleep, and sleep he did. he cut more wood out on the front of the house in his rocking chair, than you would need to build a stick home back in the states......lol

My sister earlier handed me a brother-do-list,  It seems she is in the decorating mood today, and wanted some planters hung on a few columns and so off to the hardware store I went. I needed that time away. The walk was a half mile each way, and it was my time to give thanks and do some people watching. I dragged that trip for every minute I could mustard. Here at home you can't get the quality time you can while walking alone. I enjoy the walk, and as long as it is less than 2 miles away, I always have my walking shoes on, AND quite eager to get lost walking somewhere. Don't pretty much care where I'm going.

So I do believe I should go drill these holes on the columns so I can keep lone sister of my back.......lol

Have a great day

This has been just a few hours of venting which began with my intro and overflowed into the occurrences of last night. I thank all of you for your kind words and support, though this is a site about questions, and guidelines about what, whom, and where you can get or do, this, that, or the other. I shall be fine and my folks will surely be given the best care they could ever dreamed of, from the best loving hands that could ever do the best job at caring for them. I will get my cedula in due time. I'm in a country now where things are not as I am accustomed to in the states, and I've got to accept that.
I think there are hundreds of other great HAPPY subjects to speak of.
Thank you once again.

Your story and experience will help  many my friend. More and more people are dealing with caring for another.  And doing it here is very very different than other places.  This thread is here whenever you wish to share,  ask a question,  tell a story!

Hi back home again I’ve been reading your threads and you’re helping me through a difficult time also my dad has dementia Alzheimer.  He doesn’t come out of the house Only to go to the dr.   we spend a lot of time with him.   I live downstairs and I too should be moving to the DR but not why my dad is the way he is he was the rock in our family always the person to go to when you needed anything and now I’m watching him dwindle away down to hundred pounds doesn’t eat and wants to sleep all day.    Your stories help me a lot.    When I do come down hopefully the end of sept.  We can all meet.  Expat for lunch.     Keep threading.  I know you are helping a lot of people like myself.    Thanks

DMosby01,
                           Like your dad, my dad is also about 90 lbs. he stands 5'8" tall and is all skin and bones. Lately he has been talking nonsense in that he wishes to leave to go to his house. he wonders where he left his horse, he forgot where he parked his car, he wishes to go back out to the porch to retrieve his knife.....lol he makes me laugh when he says these things. Can;t help that....
   He grew up in a farm with horses, drove his car until he was almost 89 yrs old in this wild and crazy world they try to drive in. I have no idea about his other house and he has never been a tough knife  wielding man so I have no idea where those 2 come from.........lol

When I got here about 6 weeks ago my dad was on sleep medication in the evenings to sleep nights, and then again in the morning to sleep days. I took this kind of hard, and spoke out against it. My sister said she was in control and there was nothing i could do to take him off the medication.
WELL! where there is a will, Al will find a way. she had a friend from the states come over for 10 days with her daughter and of course my sister wanted to play tour guide so she went and stayed in the hotel for 9 days with them. Woohoo!
First day she left dad was off the day time sleep medication. He laughed, and he cried, and showed more emotion in those 9 days then I had seen in years. main thing was we had fun.  I told her what I had done and we decided to split the responsibility of his care, and she ALLOWED me to  keep him off the day time sleep medication.
That was about 3 weeks ago, and now when I tell her about the things he is saying she says it is because I took him of the medication which his doctor put him on. I'm sure i could convince a doctor to put my dad on sleep medication 24 hours per day so that I could get some sleep myself. I mean it's all about me? isn't it?

I'm sure you are not giving up on your dad, as I am not giving up on my dad. I will do what ever I have to do, to make sure his quality of life is to my wishes. Not that he will sleep all day, and sleep all night, to be out of the way of someones hair.  I have no doubt at one point in my lifetime I kept him from sleeping one night a few times a week. Well? payback is a  _ _ _ _ H isn't it?

I'm happy my posts bring you something to read about what we both are going through with our parents. I only wish my dad was s clear as my mom. No she also has dementia. but dang! she hides it so well..... Must be a woman thing.....lol
Please  feel free to share your story of your challenges. We can only pray that it might help one, and that one helps one, and so on we pass it forward.
one thing we both know,  it is not easy but we do it with all our heart, all our strength, all our  emotions.

Different boats, but are pulling the same oars. .........

Human resilience is a great thing. Thank you both for sharing.

Oh, what a beautiful mornin',
Oh, what a beautiful day.
I got a beautiful feelin'
Ev'erything's goin' my way.

Sleep makes me awaken singing. Some days it's "Sunday Morning" others it's  " I Like me better"  some days it's an old Marvin Gaye Song from way back in the day, but nonetheless, when I do get that wonderful nights sleep? I wake up smiling at the world.
So, "good morning world!" what a gorgeous day it is. Dad sends his smiling thought of a great morning for you all.
He almost pulled an all nighter. That's a manly thing as we get up in age. An all nighter is when you go the entire night without having to get up and go to the bathroom......lol

We did have a great night last night,though I'm not calling in the cavalry as of yet. I see storms in the horizon, but hopefully they will pass us by without any incident.

Enjoy the day and the weekend.

What a great feeling!!!  Now we all feel a little better!

This is not a drill. Dad is driving me up a wall. My patience is being tested this morning. I have to vent to regain control.
I keep telling myself that life is good, and wonder why has this test been placed before me?
Why is he not getting better? why is he getting worse by the day? did i do the right thing by taking him off the daytime sleep medication? I believe I did. but there is always that room for doubt. never has he ever had 2 out of 3 bad nights.
I've got a thousand and one questions. but not one answer.

It's been quiet for the last 20 minutes now. I asked him to please sleep and he would feel no pain if he slept. he banged his ankle on the rocking chair a few days ago and the ankle got sore and he has an ointment that we put on it but it must remain without a band-aid  or cover of any type. there the trouble lies.He sleeps on the side of the injured ankle.
I'm going to try to sneak a nap. think that's about all i can count on today.....

Thank you for sharing. We hope venting helps.

What you are doing is hard, really hard.

Thanks. the morning has been quiet. he slept in, and of course I was a bit upset at that, but around 10:30 he got up and is now about and awake as can be. I'm hoping that tonight is not a carbon copy of last. I'm  not going to be a happy camper if so. Got to love 'em though......lol
I'm keeping the chin up.........lol

Chin up is good, but not so far up that when it rains water goes up your nose,..... you also wouldn't be able to look down at the potholes in the road.  I think you are stronger than me perhaps. Don't stop,...... tie a knot & hang on amigo, hang on..............

Thanks Tinker. I have to hang on. It's my dad, not just anyone. The words of support do mean a great deal, as doing this alone I can't imagine how difficult it would be without words of encouragement from all of you.

I know what it is like to be alone with the pain of loss of what used to be. As I said beffore, different boats, but we are pulling on  the same oars.

no news is good news. Last night was relaxing, and the lack of sleep the previous night sent me of to my dream world quite early. 
Tonight I expect the same, or maybe it should be, praying for the same.....
Time will tell.

Last few days have been kind of better than the worse days, yet still not enough sleep. I can live though on 5 hours per night. Did that for almost my entire adult life. Those who know the feeling of getting in 8 plus hours of sleep? You know what I'm talking about.
I found that over the first couple of weeks here, and boy was that nice. Then life got tough, and the stress level mounted, and before you know it, I was back in the working class years sleeping 5 hours or less.

I remember my dad teaching me about  baseball. coming to watch me pitch my first game ever at central park in NY city, and as we walked home after my first lifetime victory, my dad patted me on my butt. Good job he said.  I looked up to see a man gleaming with pride.
Today I returned the favor, and patted my dad in the butt, and yes I was proud he hadn't gone in his diaper. Got to be honest people.
I actually did have that same gleam in my eyes that I remember seeing in him that day walking home from Central Park. Good job dad! I'm here for you and will forever be. I'm ok with 5 hours. You won't hear a complain out of me.

Thank you for sharing this. It's the reality of what you are facing daily!

I understand your pride in your dad. Just remember that you pitched that game,  He has no control over crapping his pants.  To find joy or pain in such small things is the measure of us all. You are showing us the way, thank you from my soul. Maybe, somehow, I will be able to survive my own hell. the hell of never being me again. I have to find AND accept a new me, that I don't accept right now. Your dad did not choose this for himself or his loved ones, he is not to blame, neither is anyone else!

Tinker you are so right my good friend. There is no blame here. What is here is a great deal of pride in the life he has lived, and how he has raised us to be.
I do have a tremendous amount of questions.
Why him? this Dementia thing was never seen before in our family but with one other individual. My grandmother on my mothers side, who passed at the age of 93 right here in this home. They, my mom and dad, cared for her until she passed on.

I could see my mom having it, but my dad? AND! to the extent that he is worse than mom, but then again, mom keeps active.
I seek answers. Is this something that could affect me later in life. I do walk into a room at times and wonder why I am there. Yes I'm sure we all have done that, but is that a small tale tell sign of possible things to come.
The one thing I can say about my dad is that in our younger years he was the one that taught us that comedy and laughter is something that needs to be in your every day life. If not through the acts of others that make you laugh, you MUST laugh at yourself, and by yourself, BUT! you must laugh. Mom was all about vitamin C........lol

In dads later years and to this day, he is quite a bitter man. he gets so pissed off when it takes him forever to walk 30 feet to the bathroom, and then more frustrated when it takes him and eternity to get in the bathroom door.

There are far too many questions to go over here, but I guess that most important are: why him? and could this be me in 25 years?

Lots of good questions honey.  And now lots of research to be done.  I know very little about this, no experience with it directly!  I know you will be doing your google searches.....

Has to be heart wrenching to watch and not be able to do anything to change it.

Its not that I wish to change anything. They both have lived lives that no one ever dreamed of.
To have been on this earth well into their 90"s is a history lesson lived, not read about, as we have done about those years way back before we were born.
So no, I wish not to change them or their lives or save them from what is inevitable for all of us.
I just wish to understand why he is so far advanced over my mom? Why is he having so much trouble walking, where each one of his once long strides are now 6 inches of dragging his feat without them  leaving the ground?  Why does he go 20 feet and need to stop and rest for a minute before moving on for another 20 feet? Why all of a sudden is he calling for his mom? calling for his brothers? By this I mean literally thinking they are present right here with us.

I can think of a thousand more questions but it would take my lifetime to find the answers. After some serious thought, I don't think I'd  like to spend the time searching for those answers. I can live I believe not knowing, but realizing that they are present currently in my mind. I can accept now what I can't change.

NO I'm not gong to google anything other than what the Agilas schedule is for this coming opening day in October and who they will be playing. He'd like me at that opening day game.

I don't ask why me? There is no answer to many of your questions or anyone's.  The progression of the disease is different for each individual. Do not worry about your future, spend your energy living today. Doing otherwise is a waste of time. The tree that stress grows is a barren thing that bears nothing but pain. Kill it at thr roots or you will never be free.  You dad is the way he is, moves the way he does & calls out to others because he can't do it any other way.  No amount of research can ever change the reality of it all.  If it could, I'd get my sight back.

Great attitude.  Accept what cannot be changed, make this part of their life as comfy as possible.....

Opening day/night....  now there is a thought!

Thank you Tinker. You are so right  in your post.

Oh I am sooooooo there. October 13th at 8:00 PM

Wait let me get my scheduler!!!!  LOL

lol Cute

Lets do a MEET UP in September. A great spot , great prices, good food. Lots of room & excellent service.  Plus it is close to home & can walk there, sonar stick and all.  Chantsy & big buck  can attest to the joint.   Yeah, a 3 minute walk from my apt.  Selfish? you bet! However the meet up is the important thing. Any thoughts on the matter?  Speak up or be relegated to those with Buttosis. other wise known as lazy asses.  I want to make it a big one for obvious reasons, by that time I may not "see" anyone.

OK Tinker we will do this. I will start a new thread so we don't hijack this one!!!  You are on darlin!!!

Not a problem whatsoever. a change of pace never hurt anyone .......

Good, we can create a majestically memorable few hours.  A surprise or two if I can manage it also.

I am living the same way with my dad.  He went to the dr yesterday.   Didn’t get good news.    But he is taking so much medicine all he does is sleep.  Doesn’t want to eat.   Lost more weight.   This disease sucks.   According to the Alzheimer research they have a possible cure.  So why are they not asking for volunteers for the research?????

Dmosby...Yes this does suck. I've not heard or read of any cure. I'd love to read up on anything you might have if you would not mind as to email any information to me or simply post it here.

We are a natural family. We don't believe in getting them  too much into any medication. Dad only takes that sleep medication and  now thank goodness only once a day at night.
Mom on the other hand is all natural. she takes no medication.
We all live and take vitamins daily. We juice, eat healthy and worship vitamin C. thank you mom. She was an RN before we left the country for the states back in 1961.

My folks enjoy our juices and they eat just one big meal daily with many little snacks thereafter. I have dreamed of going out on my morning runs and finding my dad running beside me. OH yeah! I've woke up from that nightmare, and at times in tears when I look across the room to see him sleeping soundly in his bed. I stay in his room because he gets up to go to the bathroom and we have found him on the floor from falls he has taken. he yells to wake me up. he has called me son, by my name, by his brothers name, but I respond  to any name he calls out.  I moved into his room to make mom feel easier. She was worrying more and more about him.  it also  got to me that maybe one day we might not hear his calls for help.

We just go on. giving them the best life we can, and making them as comfortable as our loving hands can make them.
I still capture one moment each day when I see my dad smile. That alone is what I now live for. Mom and I laugh each and every day. She is truly OUR BACKBONE.
Words can not describe the strength of this woman I call Mom.

I have spoken of the hardship. the frustration. the anger at times. The lack of sleep on many occasions, and I've also spoken of the wonders of the woman I call my mom. The strong woman that makes us all smile each day and truly i believe she is the way she is.

This morning I was about to leave the house to go to the Sirena  for something, and to get my dose of natural vitamin D.  As I was about to leave the house, I went over to mom who was coming out of her bedroom and said. "Mom, I'm going out to the market. I'll be back soon. DO NOT LET ANYONE IN THE HOUSE." Duh! She has no keys to any of the gates.....lol   AND!
My sister is here.

But this wonderful woman took my statement and turned it into a barrel of laughs we had together for just a few seconds that i simply had to come share.
She said to me. " NOOOOOOOOOO!" as in shock that she could not let anyone in the house. her house.......lol
So she added, " why don't I let them in, tie them down, wait for you to return and decide what to do with them.........That might be more fun! Don't you think?".............lol I fell to my knees in laughter. She is a peep this one..........the spirit that holds us all together through all this.

She at times doesn't know who I am, BUT! All I need to do to hear her call me son? Is ask for her blessing. Bendicion Mama! "Que Dios te bendiga mi hijo!"......that alone gives me peace.

It's been a few days since I gave an update here, and there is nothing better that  I can say than, we've made some progress.
We have taken dad off half of his sleep medication. Oh yes, at first he was a bit of trouble and last night  I wanted to snuff him out.......lol
But we survived the  night.  it has taken me almost 2 months but i think I've got this down to a science now. I've learned that each night, no matter what, he will toss and turn, sit up and lay back down and call out a thousand and one times to every member of the family that IS NOT in this household at the moment, and no matter who he calls we respond.  2 to 3 hours  at the least. I pick up a book now during this storm....lol
I've learned that once i hear his breathing. Really hear his breathing. That's when  I can dig my  feet down in the sand, lay back and enjoy the sunshine because he is finally asleep.
The goal is to see if we can get him to sleep without medication. can't say it's going to be easy, or even capable of being done, but trying we must.
he is hallucinating and we feel it's the medication. Again we could be wrong, and his doctor who put him on this medication is against us taking him off them at all.
He in turn wishes to change medication. OOOOOOOOOOOK! Not going to happen.
On a more positive note? HIS DAYS, are like nothing I've witnessed for the length of time I've been here. Happy, Smiling, cheerful not grumpy, and staying up later in the day.
he is also that dad I know who taught us to laugh and be comical.
The other day after breakfast he was sitting out on the porch in his rocking chair. he always always always, asks for a second cup of coffee. MY sister who came here before me NEVER gives him that request.  Well this morning dad whispered it to me. " I want  coffee please' he said.
I responded with " there is no coffee." In a whisper. His come back again in a whisper was. " OH yes there is." I fell to the ground laughing. I gave him that second cup but not until my sister left for the day. mom joined in and had a second cup as well.

he is showing mom his love more often. Kisses her hand like the loving husband that he is whenever he can. Touches her as he passes by. he is quite a Romeo this man I call dad. Took after his own son I think.....lol It has rubbed off on mom as well as she has become more loving and caring about his care, and whether he slept well and so forth.

I guess through this all, it's brought to the surface something we believe we'd been taught our entire lives by that person whom we care for now. never give up on anything you put your mind  and heart into. We will strive to make his life better, and if what we do gives us ONE more day with him here? We've  won the race.........

There are days when I write about the good the bad and today you will hear about the ugly.

My dad has made some vast improvements, yet still fighting a losing cause, but fighting ever inch of the way. Yesterday the battle continued as his mind leaves him.
He asked to know where mom was a thousand and fifty two times after lunch.
It seemed like every 2 minutes he was asking the  same question. He asked so many times and got so frustrated at hearing the same answer, that like a child he DUH! Changed the question.
Now he asked, " Can I see her?' Again it seemed like a broken record playing over and over again. "Can I see her?

My moms is a devoted practicing Catholic, though maybe practicing should be left out of that statement.. Even though in our adult lives we have converted to Christianity you can't change that generations believe so easily. So at 1;30 PM or some time around there she goes into her bedroom, locks her door, prays for a couple of hours. Yes, you read that right. She prays for  a few hours, then showers and off to bed. BY then it might be around 4 or so. she wakes promptly at 6:00 AM to find me siting in front of my laptop in the dining room answering emails and slowly comes to get her morning kiss, and asked for her blessing.

So dad was asking and asking if he could see his wife. The answers he was getting which were exactly the same as was his question, you could see was making him furious. So again, like clockwork, He changed his question. Now it became a demand.  " I insist on seeing Miss Maria",  as he calls her at times.

OK so defeated he was. My sister fell a week ago while out with my other sister at the beach in Puerto Plata. She got cut up and banged her head to the point it gave her a black eye. I swore up and down I did not hit her to the neighbors........lol
Anyway, her big toe was swollen so she decide to go to the ER to have it checked. 2 hours later she got out of a cab with this huge cast on her entire leg, FOR A BROKEN TOE? Come on man! REALLY?

so after hours of having my dad almost cry because he wished to see his wife I took him inside to bed at around 3;30 PM. he fell right out. PEACE!
He takes his sleep medication around 7, so at that time I went in to his room to wake him and give him something that would allow him to do what he was already doing. Sleeping. Here's the ugly.

Upon turning on the light I discovered that my dad is completely naked. shorts off , shirt off, diaper off, and he is skinny dipping on his mattress. as I get closer i discover he has gone all over himself and it must have been a while because in clean up it was not an easy task. I had to shower him because it was UUUUUUGLY!   I hate putting on those blue gloves, yet he changed my diaper a few times once,  and he did not put on gloves to do so. I got him dressed, made the bed with new mattress plastic wrap, clean sheets, new diaper, and back to sleep he went. He slept right through the night from that point on.
This morning I wondered if I need to go through the motion of maybe pretending he got messy when I go in to give him his meds and maybe I can sleep 8 hours like last night more often......

As for my sister? I am now taking care of a household because allow me to say, she is milking this like there is no tomorrow. OH WOE IS ME!

I need a vacation!   .....lol