Live in THEIR reality...

I finally get it, but I need a lot of work to get it. When it comes to those moments of confusion, as in not knowing where they are or who you are, you got to just go with the flow. My only issue is, I am often saying the wrong thing and things go way out left field.

Dementia is a messed up disease in a way that it messes with the person's mind and it's just not right. Yes, their short-term memory is affected. However, some of the long-term memory is also affected. They will go back to the past. But how do one who has not been there, navigate and talk to them as if they were there. 

So it is basically role play that we have to do with them. The hard part for me is, my mother is 94 years old, and when her mind goes back to her younger days and she is talking about people back home and ask me do I remember a certain person? If I tell her, no, then she's gonna tell me that I know them. Then she try to make me remember them. The thing is, if I pretend to know them and say something wrong that she knows is not true about them (whether she'sright or not) it can be a devastating effect on her, creating more confusion, more agitation, even hallucination, from time to time.

So being where they are is a slippery road to navigate. I say that because you have to be ready at all times, and I guess I need a arsenal of responses to give when it happens. Trust me, you will never know when it's coming, you just find yourself in the middle of confusion in a blink of an eye.

Reality will not be your reality...

Over thinking....

Today, I wish I could have gotten my mother to stop overthinking all the time. I know worry and fear is the driving force, but now with dementia, it is amped up so much that there is no way of calming her down.

During sundowning she told me how she see all her things here,  but doesn't know how it got here. Yes we are at home, but during sundowning,  she doesn't recognizes that she is home. But she explain to me that my grandparents (my father parents) home, was home. See early on in the journey, I drove her to where she thought she lived, and she took me right to my grandparents old home. Growing up, we did spend a lot of time there and they didn't live far from us. My grandparents loved my mother and treated her as if she was their natural daughter. So I get why during these moment she believes that's home.

It's something how the mind is all over the place during sundowning.  So many twist and turns, confusion, agitation and so many more. They tell me how I need to meet her where she is in the moment. That is so hard to do, because with one wrong word/action will send her into a emotional spinal! The overthinking doesn't help either. While writing this, she is upset about people at some house, not knowing when we will be over there tonight. Guess what? She has no clue who those people are. So why would you want to go somewhere to stay with people you don't know?

There is no sense of common sense when in sundowning and overthinking makes it worst. The one thing that will calm her mind is sleep. But how do you get someone to nap, when they didn't sleep well the night before? Unfortunately, she doesn't recognize when she is tired either.

Need calmness in life...

Porch Therapy....

I am truly going to miss sitting out on the porch every day once the cooler fall and winter days sets in. This porch has kept me from losing myself when things got rough with my mom, yet it brought calm to me, knowing that God makes no mistakes. He knew I needed to be back home to be with and help my mother in this final stages of life. I do not know the day, nor the hour, but I am going to do my best to take care of her, each and every day!

Caring for someone not related to you is a bit easier, at least that is how I feel. I semi cared for someone other then family, so when my time was up, I went home. But for your parent and you have to move back home, there is no leaving for the day. That is where the front porch come in for me. It was like going away to another place other then inside the house.

Being out there, it gives me a chance to reflect on what brought me out there most times. I ask God to forgive me for my reactions a lot of time or thank Him for whispering in my ear to "go outside". And what happen to cause me to retreat there....mother in a confused and agitated state!  It used to bother me when she cried or yell, and my reaction to it was not good at all. That is when sitting on the porch helped me to calm my spirit, so that I don't say the wrong thing to my mother.

Dementia will test your character in so many ways. That is why we need an outlet at all cause. I now have to think about other outlets more, since fall and winter is upon us. There maybe days warm enough to step outside or even sit in my car.  Us who don't have help, often have to create outlets. Our mental health is being stretch being caregivers. It's not our love one's fault, but when you are not properly trained to care for individuals with Dementia, it become a very stressful life.

Yes, my porch gives me peace that my mind and body needs every day!

My happy place...

On repeat...

If I could change the channel, trust me I would! With repeat on TV, actually reruns, they are entertaining, but reruns with Dementia is not entertaining at all. Who wants to hear, "I want to go home" everyday or you being told you are wrong everyday  when your memory is not the one that has been compromised.

Recently, mother has been sundowning more and more everyday. And one day it started first thing in the morning and stopped when she went to bed. It was a very exhausting day for the both of us, but at a certain time it hit me, "full moon".  Yes I looked it up and it was a full moon that day!

Not sure why things get more intense with them during a full moon, but I need to find a way to lessen the sundowning (if that is possible) so that our day can be a bit calmer. The stress of care giving is getting too me now and I need my outlets more and more everyday. I am learning that I can't allow the stress of this to consume me. I need to calm and exercise my mind now.

I am learning a lot about my mother since moving back home, and she has carried a lot of anger, which turned into stress and worry for 60 plus years. I can not let that be my reality for the rest of my life.  So since I am doing this alone, I need to make sure I have things in place to be able to decompress. Beside, I need to be mentally healthy for us both.

Such a crazy life...

I made a mistake...

Awhile back, I told myself and my mother, that I will tell her when her appointments are on the day of it. Recently I didn't do that and the repercussion were catastrophic! 

It was early afternoon when I mention the appointment for the next day, and she needed to know what time. Of course it was late morning, so we can get up at our normal times that morning. However, she went to preparing mode and it was no stopping her. She stress, panic, worried, fear and so many more emotions.

So we (yes she made it hard for me to sleep too) didn't get much sleep that night. Although she wasn't recognizing me, she went with me to her appointment. Yes, was extremely tired, but I could not get her to nap when she had finally settled down. Of course, sundowning showed up that night and it took a while to get her to go to bed. 

The thing about a traumatic experience like that, it that several days for her brain to get back align where she is somewhat normal. But the following weeks, other things happen and the sundowning was becoming intense everyday. Now, it's getting harder for me to make a trip to the store and other places. The length of time can only be an hour, before her mind goes into worry mode. 

The bottom line is, wait until the day of her appointment to let her know. All appointments will be late morning if possible!

No such thing as relax...

Had a good day...

We had one good day without experiencing sundowning. I know I wouldn't wish this disease on anyone, not even an enemy. But this sundowning is starting to get on my last nerve!

One morning, we didn't start off on the right foot and I needed to walk away and pray. As I walked into another room, my pastor called to see how we were doing. Let me tell you, God is truly watching us and He knew I needed someone to pray for me at that moment.

In saying that, He knows what our love ones need and He places us there for them, even when we have no clue of what we're doing. We are all imperfect. Yes, there is help out there and most can not afford it or qualify for the help. There always seem to be something attached to what appears to be free, that you won't be able to qualify for.

This week has not been that bad so far. Am I irritated at times, yes and I got to deal with my impatientness. There are so many out there trying to tell you how to handle your love one, but guess what, each one is different.  My mother, although was married, but was very independent, strong willed, worried and stress too much over the years, and it is even stronger now with dementia. So I am at a loss, and I guess that is why I make so many mistakes with her.

Waiting for a change...

Day after Day...

Each morning when I wake up, I pray my mother will know who I am when she sees me. Since New Years Eve, this has been the norm and I just can't get use to it. To be honest, I hate it, for it was the one thing I prayed for not to happen. Then again, at least it's not an all day thing either. Yes, there has been days that it was all day, but to few to count.

Sundowning is a part of this terrible disease that I hate the most!! The confusion, agitation, hallucinations and being told you're a liar constantly,  would drive anyone crazy. But the worst part is when it continues into the next day. I am told that it is strange that she can remember things that happen the day before occasionally. Of course each person is different.

The other night, she told me how I said we were going to the other house that night. She gave me a play by play of the conversation that never happened, and that night was very mild and she went to bed at a decent time too. However, we had one night recently with no sundowning! You can only imagine how much that made me feel.

I am praying for more calmer days, especially nights.  But I am thankful for getting restful sleep 95% of the time.

Time for a change...