The 4th of July...

Before the dementia diagnosis, my mom was already scared of thunder storms and fireworks, more so as she got older. And now around 3:30am, somebody decided to fire off some fireworks that sounded like we were under attack, and it hurt my heart to hear my mother crying and calling for someone to come help her. She thought someone was shooting at her 😭 Then a few hours later, a thunderstorm came though.

Trust me, I am extremely tired and praying she will take a long nap.  But I really would like to know,  what goes on in these people minds, that fire off these things early in the morning and pretty much all day long! Grant it, I know they aren't aware of what I have to deal with, and if they knew, they wouldn't care.

Sad that people now days have no respect for people or life, and especially for those who are sick.  To hear the fear in her voice was so unnerving for me and trying to calm her wasn't too difficult. But none of this should have happened in the first place.

Yes, fireworks are illegal in the city, and has been for years, but they don't do anything about it. I am already thinking about New Years eve and how crazy that gets. I now know I have to prepare for a long night and I'm thankful it is during the week and not the weekend.

So now, I am praying the she will sleep through the madness tonight. There has been firecrackers going off, off and on today.  She has been pacing back and forth and she decided to take a nap on her own. So that is a step in the right direction.   But you know what's really crazy, these people actually shoot off fireworks year round!! And mother would always ask, "what was that?". It's like every little sound scares her.  And let's not mention cars/trucks with extremely loud music (if you want to call it that) driving through or parked or someone playing it loud from their property. 

When will the madness end...

Living Nightmare...

I have had a few nightmares in my life, both during the day and at night.  But living with someone going through dementia, is worst. Why? Because you don't know what is coming your way, the good, the bad and the ugly. Trust me, all 3 can appear at once and at any giving time.

We have had our own mood swings, and pretty much be able to change it or go lay down. But now after 7 months, I come to learn, it's not the case with a mind being destroyed by a disease, especially one that has no known cure. 

Now that I know what will dictate how the day will go, I tried to head it off before it happens.  One thing I have come to learn, my mother needs a 2 hour nap, in order to let her mind rest and reset. Anything less, yes, it is a nightmare.  And today, there was no nap. We were back to "I want to go home". Like the other day, I asked her, where do she think she is. Today she didn't know. Yes, it got to the level that pushes me to a breaking point.  I find myself yelling, screaming and more at my mother. Do I feel bad afterwards,  most times no! I know that isn't good, but when you have a person yelling at you and don't know who you are, it hurts!!

This went on until she settled down a bit. When she finally decided to go to bed, that's when I realized, she wasn't seeing me as her daughter. I have such a hard time getting pass that!  I don't like scary movies, but this is one that I need it to end. 

My life is not my own...

Reminder to self...

In Honor of someone you know or knew who has dementia. In Honor of all those I know and love and lost who are fighting Dementia/Alzheimer’s.

1a. Every time you enter the room announce yourself. “Hi Mom- it’s Margaret.”
NEVER ask-  Do you know who I am???  That causes anxiety.

1.  If I get dementia, I want my friends and family to embrace my reality.

2.  If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.

3.  If I get dementia, don’t argue with me about what is true for me versus what is true for you.

4.  If I get dementia, and I am not sure who you are, do not take it personally. My timeline is confusing to me.

5.  If I get dementia, and can no longer use utensils, do not start feeding me. Instead, switch me to a finger-food diet, and see if I can still feed myself.

6.  If I get dementia, and I am sad or anxious, hold my hand and listen. Do not tell me that my feelings are unfounded.

7.  If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.

8.  If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.

9.  If I get dementia, ask me to tell you a story from my past.

10.  If I get dementia, and I become agitated, take the time to figure out what is bothering me.

11.  If I get dementia, treat me the way that you would want to be treated.

12.  If I get dementia, make sure that there are plenty of snacks for me in the house. Even now if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.

13.  If I get dementia, don’t talk about me as if I’m not in the room.

14.  If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.

15.  If I get dementia, and I live in a dementia care community, please visit me often.

16.  If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.

17.  If I get dementia, make sure I always have my favorite music playing within earshot.

18.  If I get dementia, and I like to pick up items and carry them around, help me return those items to their original place.

19.  If I get dementia, don’t exclude me from parties and family gatherings.

20.  If I get dementia, know that I still like receiving hugs or handshakes.

21.  If I get dementia, remember that I am still the person you know and love.”

22. If I get dementia, please make a memory board of pictures with names so when people visit I will know they're friends or family so I don't get frightened by a "new" face.

Love always...

Sundowning 101...

In the world of Dementia,  there is a thing called "Sundowning".  What is it? Google says this, "Sundown syndrome, also known as sundowning, is a set of dementia-related symptoms that can include increased confusion, agitation, and anxiety in the late afternoon or early evening. It's not a disease, but a neurological phenomenon that can occur at any stage of dementia, though it's more common in the later stages". And for more information,  just visit the Alzheimer Association website.

For the past week or so, my mother has been in a state of sundowning and I know when it is going to happen. I did my best to keep it at bay, and do some things to help redirect her recently.  But of course, her stubborn, independent self, fight me on just about everything, and I have to live in hell pretty much every day!

Of course, after talking to her doctor and added a second dose of a medication she is already taking, things has not improved.  I had another day of staying up well over 12 hours. This time it was 18 and a half hours and  watching her through the camera,  it hurt my heart, to watch her in a state of confusion, but yet stubbornness. Crazy part is, there are days that things are almost normal,  and once you start putting your guard down, boom...back in the land of confusion and chaos!

And now today, I call it a meltdown because when she spends to much time changing clothes first thing in the morning, confusion follows right between. I was thinking it was because of the weather,  but now I see it's totally something else. She had two pretty good days, but last night after sleeping for an hour,  she got up like it was morning, changed her clothes and everything.  This was at 8:15 pm.  So her sleep was interrupted, not enough for the rest of the night and 2 hours changing clothes, does not make for a good morning.  I got to make changes to bring her confusion down, so I can get rid of the stress in my body.

Need a hard reset...

It's always something...

Mom started a new way to take a current medication.  It is much easier, but of course, it takes a bit longer for the new dose to get into her system.  So with that being said, she started the medication a week ago and of course things had been out of whack.

Sunday, she was up for 20 hours, and so was I.  Worst part, she pretty much stayed in a state of confusion that day, and I was exhausted to the point that all I did was cry that day.

So at one point, I said screw it. I went to bed and left her sitting up downstairs. Now don't get it twisted, I do have a couple of cameras to monitor her.  Of course once she went to bed, I had to go back down and redo what she undid.

Thank God for the online support group on social media, for now I don't feel all alone with some of the things I been going through with her.  I'm learning a lot of her behavior is a normal thing. Like saying how she wants to go home. Mind you, we are home, but learning it could be where she is in her mind in those moments. Like she maybe in a younger period of time in her mind. Or, and I did think this, because of the lack of company from family, and she has said this, that her family doesn't know where she is and probably looking for her.

I am also learning that the family member who is caring for their love one, is doing it pretty much alone. And some in the group have been doing it for years. They call Dementia "the long good bye".  I truly hate, and I try not to use that word, but I hate what it is doing to her.  No I don't have a life, but when I look back, I haven't had a life for years, due to the fact that my mother would be worrying about me, when I am out, especially at night. It gotten to the point, if she didn't hear from me before a certain time, she would call my cell looking for me. I believe this was the beginning of the deterioration of her mind...worrying and stressing.  It got to the point where I just stop going anywhere. But she still worried.

And even now with the Dementia, she still have the nerve to worry. If only I could get her to relax, it wouldn't be so hard for her, and for me. But we are beyond that stage.....

The long goodbye...

Out of sight, out of mind...

With Dementia, the short term memory is almost non-existent. Growing up, I would hear the phrase out of sight, out of mind and today I witness it. My sister called my mother from California and it had been a long time since they talked. At first mother didn't know who it was, even though she saw her name on the caller ID and I told her who was calling, but it just didn't register at the time. But when it did kick in, mother talked to her as if she was someone in their late teens or early twenties.

My sister just rolled with it, but it scared me, for I knew something was going to happen later, and it did.  Her mind crashed and she was back in Ohio, told me I was her sister, and started packing clothes once again. (Yeah, forgot to write about that nighmare!)

You have no clue how much I hate this disease and what it does to our love ones. I am not one to use the word "hate", but now I do and with great passion, for it is robbing me of my love, my friend, my mother. I hate that it causes her to not see me as her daughter 75% of the time!!

I need help, but until I can get it, I decided to join a support group on social media for caregivers and have learned how much I'm not alone in this journey.  One major thing I learned,  my mother says often, "I want to go home", and how they have handle those moments. Yes, it happen tonight, but a little different, for she wants to leave in the morning.  Hopefully this night sleep with cancel that thought.

I suppose, they are feeling that they are being missed, when though I am here living with mom, but in her mind, I don't know what year she is living in, in those moments.

Give me strength...

Groundhog day...

I guess it was just wishful thinking on my part. I saw a big difference in my mother with her new medication.  But four days later, it was back to the days from hell! Yes, I know it's just the disease that is causing all this chaos that I go through every afternoon and sometimes all day. But how do you get a person to shut their mind down from worrying, fear and anxiety?

She actually knows, if she takes a good nap everyday, a lot of this is manageable, but she doesn't nap long and I'm alone to live with it. 

Fast forward to today, two weeks later and finally, she napped for 2 hours and an hour and half of that, I got to nap! I can't to begin to tell you how good it felt. I have been so tired for so long and I pray I can get more days like today.

Most don't know, but I'm a sleeper and I love to sleep. I believe it is one of the main reasons I have a hard time handling the changes that mom goes through. Didn’t realized until this moment that I am sleep  deprived. 

I pray the Lord will give us more days like today, and will take advantage of it to give my body and mind the rest it truly needs. I can get with that type of groundhog day!

Change the times...