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..

There's no place like home...

Within the world of someone with dementia, they always want to go home. For most and my mother, they are home, but telling them that, most will not agree. Now I am learning for them, it may not mean a physical home. If you ask them where's home, often times they can't tell you.

For the past 2 weeks, every night I hear "I want to go home". I am suppose to redirect her with something like, "well, we will stay here tonight" and " lets see what happens tomorrow". For her, it doesn't work and depending on how tired her mind is, she would have a mental breakdown.  Trust me, it is not for the weak. I learned for my sanity, is to just go into another room and 90% of the time, it doesn't  work.

But now we're into our 3rd week and I believe the higher dose of medication is kicking in. The days are filled with a lot less sundowning affect, but one thing has changed, instead of her saying, "I want to go home", she is asking "are you taking me home". Am I happy? Somewhat, but there are still other behaviors still present and I know that it will always be, just don't know how intense and how long it will last. When I say "last", I mean in hours!

Now I know when she says "home", she is talking about a physical place. I believe it is my house, because she ask is she is staying here at my house.  My prayer now is that she goes to bed at a decent hour every night!!

This is truly a one day at a time life...

Transparent Moment:

With dementia, you have to change your way of thinking to be able to handle the changes going on in your love  ones brain. Trust me, this is the hardest thing to do, especially for me who has no patience, but I'm working on it!

Live & Learn...

Stop Flipping That Switch!...

There are those who can turn their emotions on and off just like a switch, and depends on how you view it, it can be a good thing for that person.  But in my mother's case, it's not a good thing and it sneak up on you too.

Yesterday was somewhat of a good day, all systems was mild and comfortable, that I can deal with whatever came my way, but today.....even I didn't know if I was coming or going. I wanted to leave so bad, but I knew that I couldn't do that.

Last night didn't end the best, a lot of confusion and anxiety just before going to bed, and this morning was the continuation of last night and it pretty much didn't let up. The thing is, it hit me when I wasn't ready, I just got ip from a good night sleep, so I couldn't adjust fast enough and I became frustrated and angry! Yes, I yelled at my mother and I pray she and the Lord will forgive.

They tell me it will happen, me losing it, because this disease is so unpredictable. You truly don't know what's going to happen each day. A few weeks ago, I had another day like today, but more intense (if that's possible), and she was doing things that, well let's just say, she was making things comfortable for people that she could see, and I couldn't see.  She finally ran out of stream around 2am the next morning.  By the way, my mother is 93. 

I pray the higher dose of one of her medication will calm her back down, where it is more manageable for me. This disease has no cure, but they can treat the symptoms, for as long as their minds will allow.

We must take care of our mental health. Keep stress as low as possible, refrain from worrying about every little thing, but yet exercise our minds in a good way, by keeping it active and well rested.

The mind is a terrible thing to waste...

12 hours, that's all...

Back in the day I could sleep 10, 12, 15 hours with no problem. But now I'm barely getting 7 hours of sleep at night. Dementia is kicking my a** I really mean that. The things I've been going through with it because of my mom, is because she has it, and it's too much. It's too much for one person. I will admit when the doctor change when she should take one of her medications, everything's been cool. Actually it has been cool for a month. The confusion and today, this is cruel and unusual punishment. I should call child services. hallucinations has been low.

This past week we had some rough moments,  but last night was the worst. You see her sleeping pattern has been off this week. When she gets 10 - 12 hours of sleep, things are milder, but less then that, or more then that, the day doesn't start well. The day is pretty much in sundowning mode, with last night being the worst.

She has a somewhat of a normal time she would go to bed, but that's been hit and miss. But I didn't trip and while working on some crafting items., of course she falls asleep in her recliner. I let her sleep for a bit, then woke her at 8pm to get her to bed. That was the beginning of everything spiraling out of control. From that point on, all types of craziness happen. It took 5 1/2 hours to get her into bed. I was so tired and I managed to get 4 hours of sleep, but I am still tired.

She is not herself this morning and need more sleep also. My prayer is that she goes to bed at a decent time tonight. I wish I had a video of everything that took place last night. I did however recorded when she made up a bed for imaginary children. 

I'm a crafter and do things to help me relax after a long day of caregiving.  Well, she interrupted that, by fusing and complaining about my things being out. If you are like me, you don't like people touching your stuff, and she was doing way to much in that area. So instead of relaxing, I was trying to remain calm. That is the hardest thing to do, because they become young children when Dementia is a part of their life and very aggressive too.  I know talking to her in a calm voice is the best way to get through to her, but my mother is different now, she tend to argue and pick at me, which is totally out of character for her. I find myself walking away and going outside, in order not to disrespect her. Yes, I have failed a lot of times also.

Being a caregiver for someone with dementia is so hard to do. They will go through so much mentally, that you won't know if you're coming or going, that's pretty much everyday. You don't know if you will be fighting or relaxing each day. I don't want to have burnout like so many caregiving for a love one, so I need my crafting down time to keep me sane!

Need all that sleep...