Do you know what time it is?...

I did not know there's a day to recognize caregivers! Every third Friday of February, but it should be everyday. 

I knew people who cared for their loved ones over the years, but I didn't realize how overwhelming it is in so many ways. I now wish I had been more supportive, because going through this with next to no support/help, is very challenging both physically and mentally.

I thank the ones who has helped when they can. Most of all, I thank God for being my strength and giving me a gentle reminder of "why" I need to do this, each time I wanted to walk away. 

To all caregivers, I pray God will strengthen you in this journey and that He will give others a compassionate heart to help. 

National Caregivers Day .

Somebody watching me...

Before Dementia came into my life, I wasn't fully living life. What does that mean? Although my mother wasn't living with me, it was like she was watching me. She sat and worried all the time when she knew I wasn't home. I know I said this before, but now that I am living with her, she watches for me to get back when I make a run to the store. When I get back she says to me, "I thought it was about time for you to get back"! Most times she doesn't remember me leaving!

But, this past month has been rough on the both of us. Since new years eve, every morning my mother does not see me when she looks at me. It was happening off and on for a long time, but somewhat regular now. A week ago, we had a doctor appointment but she became very agitated and angry because I wasn't there to take her. I had to get my brother on the phone to convince her that we need to go to this appointment and that it was me with her. We made it to the appointment, and I learned it is part of the lewy body with her vision. Now that I know, I have to learn how to deal with it...btw, half way through the appointment, she started recognizing me, and on the way home, she told me how she didn't appreciate how I sent the "fake" Nita to take her to the appointment!🤦🏾‍♀️

Crazy thing is, she watches the other person (which is me) so closely, that she tells me every word and action that happen! It's really crazy when she tells my brother too. There are too many different levels to Dementia. Way to much to learn and keep up with. Their personality is all over the place. But when they become scared, it is scary for you as well. But the flip side, she remembers all I say and do, during those off moments, because is not seeing me during those moments. So she does pay attention to me this way, although she sees me as someone else.

However, I didn't realize just how much time, I would be spending watching her. Her movements are slower now and a bit unstable, but she is still pretty independent in somethings, and want that to remain the same. I do make sure I am close by to help when needed and measure the temperature of her mental state, before I do what I need to do.

Watching her watching me...

Transparent Moment: What a year has taught me...

I have been staying with mother and year and a month. I will say, I am not built to be a caregiver. I truly don't know how people can do this for a living. But once I thought about, they can, because they get a break from it. Most only do it for a few hours a day, some for 8 hours and others for overnight. For me, it's 24/7, and I have and still do, make a lot of mistakes. Caring for someone's physical body is one thing, but to care for a person's mind is not for the weak.

It is mentally draining, and hurtful at times, especially those times when she doesn't recognize me and thinks I'm someone else. You know there are certain situations where you need tough skin to get through it until it's time for you to leave. But now, I have to tough it up in a major way. I was always one to be able to remove myself, when I know something is going down the wrong path. This time, I can't escape.

But I have come to the realization, that God has me here for a reason. With all that is going on, I am getting my prayer life back on track, doing my devotionals, both day and night. Slowly starting to react differently when her mind goes left. But I am human and I will make mistakes and react badly at times, and I ask her and God for forgiveness for my actions and move forward praying I'll do better.

Yes, caregiving is not for the weak...

Who are you...

I wish I could think in those moments when my mother doesn't recognize who I am. Lately I'm my grandmother (her mother) and other times I'm her older sister. Recently and often, I'm that "other girl" with no name.

These moments truly un-nerves me and I know, but don't know what to do. I do my best to remain calm, but it's my mother and in the back of my mind, I don't want her not to see me. Granted, most times it doesn't last long. I can go out the house and come back in to, "I was wondering when you were getting here", although I've been here all morning.

Just this morning, we sat at the kitchen table talking about the report on the recent shooting in Minnesota and other things. I went into the bathroom for a bit, and when I came out she asked me, "when did you come downstairs". Trust me, it caught me totally off guard and once again, I didn't respond to it well. I got to figure out how to get myself to not react to the switches differently, and how to meet the switches when they come.

But to pretend to be someone I'm not is so hard. I tried a few times and it was disastrous! No matter what I said, whether true or not, I was wrong and asked why I was mistreating her. It's like I'm damned if I do and damned if I don't! 

I have no clue how long this journey is going to be, but I need to figure it out, because I need to maintain my own sanity with all of this. I am giving up my life in a way to care for my mother. But I will say, I am doing more that I haven't done in a long time. But I need to get back to my crafting to help me relax more.

There's got to be another way...

Turn off the lights...

With a day full of laughter and light conversation, I sometimes hate to see the night coming. Yes, she still goes through sundowning, and most times it isn't that bad. Last night it was rough, but I thank God it didn't last long, just a little over an hour.

I think about asking my doctor if I should start taking some type of vitamin for brain health. I am working hard not to let what my mother is going through to affect me. I've seen to many Caregivers post about being depressed and isolated from the world. There are those who feel like they are losing their minds, and I don't want to feel that way.

Granted, I don't get to do much, and then again I haven't done to much of anything before my mother's diagnosis. Anytime I would go somewhere or think about going somewhere, she would start to worrying to the point that I would change my mind and not go. It was so bad, that when I did go, she wouldn't go to bed until she knew I was back home safe. I can understand the worrying if I was like in my 20's, but this was happening up until I started staying with her...and I will be 66 next month!!! The real breaking point for me was when I was at a game night with people we both knew. At 9:30pm, my phone rang and I panic a bit, because it was my mother. She was calling to see if I was at home yet! Trust me, they teased the mess out of me after that call.

So now, although I am with her, there are moments that she sees me as someone else and won't go to bed until I come home. It happens during the day too, and I then have to figure out how to get her to see me again. Trying to move differently now is a challenge and lying 75% of the time is not me. Granted we all lie here and there,  but now, it is like a requirement!

Come on morning...

It's Morning...

I gauge the day each morning on how my mother greets me when we are up for the day. Sad to say, most morning she greets in a way that I realize she is not seeing. That is one of the reality of this disease. But lately, she greets me with, "morning daughter" and that does my heart good!

One good thing about mornings now, is like at the beginning of staying with her, I can good and run errands early mornings and trust me, I do check in on her with the camera while I'm away.  I believe I mention how she has left the house twice on a Sunday morning, so that is always in my mind now when I leave. But I am calmer when I know she sees me before I leave.

However, yesterday day morning, I needed to go and return an item, and normally, I do my best to not leave two or more days in a row, but it will happen I suppose. The suprise was when I got back. Now I did check the camera before I headed back, and saw she was at the kitchen counter, and I assume she was fixing a bowl of cereal. Well, I walked in and she was at the table, eating scrambled eggs with toast and jelly. She looks at me and said, "I wanted something different, so I made some cheese eggs". I just gave her a high five!

You see with a dementia mind in its early stage, they forget how to do certain things off and on, but you won't know right away what those things are. With my mother, she kept telling me how she doesn't remember how to turn the stove on, and glad I'm her to do it. But in order to cook eggs, she knew how to turn it on. Interesting isn't it? But later I realize, the side of the stove she cooks on, is the side she always used. But the other side with the coffee pot, she doesn't remember how to turn it on. And we all know they turn on the same way.  Just think, 11 months ago, she couldn't remember how to use the stove. So yes, things will come back one day, and gone the next.

I am thankful for all these better days we are having of later. There is still confusion and hallucinations within the days, but much fewer then before. How long this will last? I have no clue, but I'm going to take it one day at a time.

Calmness. ..

Who am I...

I know having dementia is hard on the person with it, and often they don't know it. It is normal behavior for them, and what's crazy is that they don't know it. At least it becomes that way down the road.  Although it's early for my mother with medication, but when memories comes back to me, this slow decline started at least 10 years ago.

So now I am somewhat losing my sense of self, but I am doing my best not too. But the most frustrating thing to go though, is when my mother doesn't see me when she looks at me. Often now, I am some worker that is here to help her and do things around the house. But the main name of this person is "Anita", which is my name, but visually, she sees another face.  Most of the time it will last most of the day. The only time I know it has switched back is when she calls me "Nita".  Then ask me did the other girl leave.

You see I need to get to the place where this doesn't bother me, and not feel like why am I here or go into a depress state. I'm sure we all have experience someone forgetting our name or call us by the wrong name. We will correct them and they either apologize or laugh about the mistake. Well with my mother, correcting her takes her into a state of confusion, agitation and most times anxiety, I know i should not correct her, but I do and I guess it's out of selfishness.

I hate having to pretend I am someone else for her. And it is exhausting when it goes back and forth all day. It sometimes feels like I don't know who I'm suppose to be! There will be moments where she is so agitated and anxiety kicks in to the point where she cries for long period of time. Of course I want to console her, but it hurts when she rejects me and it's because in those moments, I am not her daughter. I guess I am becoming depressed at times now, and who wouldn't when the mother you love don't see you when she looks at you. I have mentioned how I am in a online support group of regular individuals going though this too. I am amazed how some seem to have a good handle on this caretaking thing, then there are others like me that post, "I can't do this"! That is me some many times.

Right now, I am looking for other ways to keep me straight. I do my crafting, when my mind is calm, but I got to get back to doing things that makes me feel good, that doesn't interfere with caring for my mother.  Currently I am learning to take better care of our plants, and that is giving me some peace. This is going to be a long journey and I need God to help me to remain calm, find what will keep my mind quite and most of all, how to not react to each time my mother doesn't see me.

Need calm in the strom please..

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...