Sleep, just want to sleep...

First off, if you find yourself caring for someone with Dementia 24/7, you can forget about sleep....at least that is how it is for me. See, I am a sleeper. I love to sleep, I love 8 to 10 hours of sleep a night. I'll be happy with 7 and a half, but living with my mom, I haven't been well rested for 8 months now.

So now, with the help of medication along with melatonin, she is getting plenty of sleep, so you would think I can too, but I can't seem to do that. I know it is because of the unknown. Early on, she would have nights where she got up in the middle of the night thinking it was morning.  Let me tell you, it was always at the times where we had somewhere to go the next morning.  

So guess what, because of that, this sound heavy sleeper, has become a light one, and I find myself checking on her whenever loud cars drive by, or the neighbors playing their music loud, and let's not mention fireworks!! The 4th of July was crazy, and scared my mother so badly, to the point she thought someone was trying to kill her!! 😢 And me, I didn't get much sleep that night either!

I thought about taking a melatonin, but I am afraid I may sleep too soundly and would miss something with her during the night. Then their are those who say, "Just take a nap when she does". Yeah right!! She has never been one to nap, so I can count on one hand how many times that has happened!!

Until I can get real help, someone(s) that are willing to give me a few hours break, I will just be sleep deprived for a long time.

Zzzzzzz...

Just thinking...

I was talking with someone and they said that it seems, cancer and dementia is run rampant in this day and time. Maybe it is, or maybe we just didn't notice until it came knocking on our door. Ny mother, who is the sweetest and most caring person I know, to have to live her final days in a world of confusion, agitation, hallucination, and so much more, is not fair!

Then I had to start looking deeper. As I look back over moments of life, I come to realize, that she lived in a world of fear and worry. A lot had happened in her life, and I realize she was hiding a lot from us. I can only imagine how much of a toll it took on her mind. I know stress and worry is a big problem and it has created mental health problems for so many.

I was telling them about I am what they call a "rainbow" baby now days. And when I looked back over the years, I just thought all that allowing me to enjoy my youth, came with a cost for her, and that is worrying about me out there enjoying my youth.

Of course parents are going to worry about their children, but when the worry continues to grow as they age into adults and beyond, I now see that became a problem. To be honest, I stop living life in my 50's because of the excessive worrying my mother was doing. Sounds crazy doesn't it? And now, here I am, 65 living with my mother, because her mind has been damaged of not taking proper care of it. She allowed the constant worrying about me, my brother and my son, to put her mind into a world of chaos.

I had decided some years ago, once I realized the level of her worrying, to only share what is necessary for her to know. Because when she knows to much, she takes it on as her own and use so much energy worrying about it, when we don't worry that much about it, because we're working to work it out.

So now, we must think before we speak. If there are problems, we keep it amongst us. Right now, a close family friend, one of her best friends, has gone on to glory. But we can't tell her. Granted, she had not talked to her in months, so the dementia helps in this case, because it's like they say, "out of sight, out of mind", and I know she will remember her, if I were to mention her name. But I know her reaction to the news, send her into a state of confusion, which brings on other negative reactions.

So please, take care of your mental health. Your mind needs rest, food and water. Don't let worry and fear take over!

Live life..

2 and a half hours...

You don't know the hell I was going through the past 5 days.  The one thing I know about this disease,  is that sleep helps the mind, and that is the same for all of us!! When the mind is tired, you mess up, and tell me I'm lying!  However, the difference between a healthy mind and one with Dementia, is that the person with a healthy mind, will shut it down and get some rest. My mother doesn't recognize that. She doesn't recognize when she is tired to the point of exhaustion.

Today, she napped for 2 1/2 hours and I managed to get 1 1/2 hour nap, the first nap in I don't know when. But the good thing for my mother, she went back to sleep, 4 hours later. My prayer is we continue this for awhile. Have you ever tried to function tired, when you're old? I'm 65 years old, and this is a lot on me. I now have to make sure to exercise my mind in some way.

I know, you probably thinking why I am excited over a nap? If you have never been in my shoes, you wouldn't understand.  See, I am a sleeper naturally.  I am use to getting up around 9am or 10am. Now I am waking up when my mother start moving around. I'm not going to tell you what time that is. But someone told me they can't understand why I just can't take a nap when I want too.  Would you go to sleep on someone who is hallucinating about wanting to go home, or trying to go out the door, because they are seeing someone outside to pick them up, and there's no one there? No, you can't turn your back on a person suffering from dementia.

Right now, I should be asleep, but I just needed to write this. I love my sleep, but I hate what my mother is going through,  so I will do what I can, to see that my mother needs are met.

Sleep does a mind good...

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...