3 o'clock in the morning...

Actually it is now 4:30 am, and all I am doing is tossing and turning, trying to go back to sleep. My mother got up around 3 AM to go to the bathroom. When she came out of the bathroom, I heard her going down the stairs, so I got up to find out where she was going. She told me she was going to find a way to get home. All she had on was her robe and carrying her canvas bag. Once I had her back in her bedroom, I found out she had packed clothes inside her canvas bag.

I told her what time it was and that she needed to go back to bed. The thing is, she did not recognize that it was dark in the house. Yes she had her lamp on and the bathroom light on too. I put motion sensor lights along the stairs, but not realize it was still dark, let me know she was either sleep walking or continuing what she was dreaming.  This is the second time in almost 2 weeks, and it's been almost a month since it last happen.

I blame this on a friend of mine, who asked me if she had gotten up in the middle of the night. I say that, for I truly believe there is power in the tongue. Proverbs 18:21, (MSG) "Words kill, words give life; they’re either poison or fruit—you choose". I believe we have to be careful of what we speak out loud into the atmosphere. Satan is always listening and waiting  to mess up our life with our own words. So, she mention it, and two nights later, it happen which by the way, it was a Sunday morning, when I needed my sleep.

I already have a full plate with trying to pack up my things to move them here with her, but not getting enough rest isn't good for either of us. I did get her back in bed, but for me, I pray she will nap this afternoon, so that I can get a bit of sleep.

People just don't realize what we go through as caregivers to our love ones. I just knew other family members would help and give me a break from time to time, but I quickly learned, that is not the case. I also learned that this is a common thing. Not only the lack of help, but the isolation is painful, not just for the caregiver but more so for the one who is going through with Dementia.

It hurts to hear my mother ask me, "where is everybody?", or "has anybody called today?". I for one shouldn't have to ask grown people to spend time with her or at least call her. I don't want to believe they just don't care, but I truly believe that they don't!

For now, I need her to get those naps in, and I hope everyday. I know there will be times that it won't happen, but I got to make sure she doesn't go to long without one. I need my rest too!

It is now 5:59am...

What's it all about...

There are many different forms of Dementia and my mother has Lewy Body with Parkinson. No one should have to live with Dementia nor die from it, but that is the reality of it.

With Lewy Body, there is sleeping issues, hallucinations, memory problems and with the Parkinson, movement issues. Yes, she has all of that, but with some medication, it helps lowers all of the symptoms, also along with good rest.

Without being well rested at night she may have some night terrors, screaming or yelling, along with hallucinations, which often times become a problem, especially in the mornings.

When she does not recognize me in the mornings or any other time during the day, she will not leave the house or go with me anywhere. The worst part is when she search the house looking for me, the anxiety kicks in and no amount of talking will calm her down. This is one of the reason why sleep is so important to those with Lewy Body.

However the Parkinson is affecting her movement as in walking, posture and balance.

Now that I been back home with her, I am learning so much of what she is going through within her mind, fear, worry, anxiety and stress. All this would affect your mind too. One thing for sure, lewy body makes the phrase "out of sight, out of mind", a true reality!

Everyday is different...
Some days are calm
Some days are chaotic
Some days are normal
Some days are shared with hallucinations
Some days are a roller-coaster ride

But we're here and I am still learning how to move within those days. Did I want to just leave and not come back? Yes!!! Would I actually leave? No!!! God said, "Honour thy father and thy mother: that thy days may be long upon the land which the LORD thy God giveth thee." I have done this all my life and will continue doing so.

So this morning, she greeted me with a smile, kiss and hug. I needed more mornings like this, and I asked God for more! 💞

Life be Lifin...

Selfie...

A few days ago, reminded me again how much of a roller-coaster ride Dementia is. I took this photo of mom giving me a kiss. In that moment I thought she knew she was kissing me, her daughter, but I learned later that day, that she did not know it was me. Yes, it hurts every time she doesn't recognize me.

Most wonder why I don't take her to church. They don't know I have canceled appointments last mintue or wait until she's gone to bed to make phone calls. All of it is because she doesn't see me, her daughter, first thing in the mornings and this can going on throughout the day. So because of not recognizing me, she refuses to go with me, because I'm not her "Nita". Yes, she knows "Nita" will be taking her somewhere that day, since she doesn't see me in those moments, she starts panicking, and go in search for me throughout the house. I am at a loss, for nothing I say or try to do will calm her.

Yes, this too is heartbreaking, but this is my reality of living with Dementia. Trust me, she can still entertain company, whether she sees me or not. But I've notice the switch back can happens during visits too.

That day, I am sitting in another room for awhile, praying that when I join her, the visual will change. If not, I have to be careful of what I say and how I move around her until it does changes back.

God is still working on me and my impatience ways and I'm getting a bit better with it, for I have too, or I will be no good for her or myself. I had a brief meltdown recently and I walked away from her. Part of the roller-coaster is saying certain things repeatedly. I do my best to give her answers she will accept.  But with my mother, I can't use the same answers either, for she remembers what I have told her, and reminds me I said that before and then situation intensify after.

I know her mind is compromise, and one would think she will not remember what has been said, but she does and often. It's so frustrating and I allow it to get to me. There is a lot of work within me, I need to do and I do know, I need God to help me more and more everyday.

One good thing did happen the day of the meltdown, once she got to talk to her grandson (my son), she calmed down a lot and the rest of the day was much better. 

🤦🏾‍♀️life...

Last night...

I'm not sure how I feel with things going back to the beginning. What I mean is that lately, mom is having sundowning moments more frequently. I am doing a bit better with them now, compared to a year ago, but I truly hate them, and what she is going through with them.

I know there is no way to avoid it, but there are ways to minimize it. But that is difficult at times with her, because when it comes to redirecting her, it may only last for a moment, if that long or if I can redirect her. I have learned during this past year, my mother is a very stubborn person and once her mind is made up, there is no way of changing it. So when sundowning hits, you can only imagine what I am going through with her.

One thing I can say about these moments is that, I hardly call my brother now for help. Back then I would be totally beside myself in a panic and not able to control my emotions. I still have issues with my emotions, but I'm learning how to keep them in check better, however there are times when it gets to, but I do my best to reel it back in. So now, once it's settles down and she's in bed, I update my brother then.

Now that I don't have the support that I thought I would have, I got to get a grip on my emotions and protect my mental health. I can not and will not allow this illness to mess with my mind, for I would be no good when it comes to caring for my mother. But I am grateful to those who will allow me to vent, and the few that are willing to be with her when I have important things to do, but I do my best to space that out, so I don't run them off.

Dementia sucks...

Ooh Child...

Wow, yesterday went into a direction I have not experienced with my mother. Her Lewy Body Dementia, affects her vision also. She will look at me, and sees an entirely different person. So in her mind, this is a real human being and no amount of explaining will help.

She was seeing me, but after her fixation with her purse for well over an hour, she looks at me and ask, "Where did Nita go?" And it went downhill fast from there. She was an emotional wreck and I was trying to keep myself in check. But no amount of answers I would give her would satisfy her mind and she was determined to find me.

It had gotten to the point that I had to go outside the house for a bit, hoping things will switch back and when I came back in, it had, but now with bigger issues. Now I needed to find the person she was seeing, although it was me. It was a bigger mess!! Through all the chaos, I guess the sleep meds kicked in and she went to bed, thank God!! 

This disease has so many different layers and I feel like I am on a roller-coaster when things go the wrong direction.  I now understand why caregivers are stress, tired and sick, for our bodies and minds aren't built for this. I thank God that mom sleeps all night 99% of the time and thankful when I can get 7 to 8 hours of sleep. Strength is what we need each day, physically and mentally.

Let it get easier...

I keep forgetting...

Tell me, how would you feel, if your parent did not recognize you? Well for me, it appears this is my new normal and I am having a hard time dealing with it. I know the best thing to do is not react to it and just go with the flow. And I probably  could,  but when she mention my name as if I'm not there, I died inside and it takes everything in me not to break down in tears or yell who I am, and if I do that, things get out of hand and then I am left trying to calm her.

My main prayer was not let her not see me. Of course I didn't know how I would handle it and now I know...not good at all. This disease is horrible and they may not remember what has been said or done, but we as caregivers remember. Trust me, I do feel like walking away, and I know that I can't.  I feel and have yelled and later ask God and her for forgiveness.  Most times she doesn't remember what had happen, and if she does remember, I still apologize for my actions. Last thing I want to be is disrespectful to my mother.

Look at it this way, we aren't prefect and as long as we are in this flesh, we are going to make mistakes. The thing is, we need to be slow to speak and slow to anger, and I need to work on that quick. I often wonder if I was prepared for this part of life ahead of time, would I be different? But i don't think anyone will truly be prepared for this disease. Dementia is no joke! It has to be the cruelest disease out there, to be alive, but your brain is slowly dying.

Yes, I fear all that is yet to come and I pray the Lord will help me through it. I wish that I and so many other caregivers, had family that are willing to help care for them. I am slowly coming to terms that I'm pretty much in this alone. I do have a brother and he helps when he can. Trust me, I know his time is limited and he does his best to accommodate when I need him. No, I'm not making excuses for him, I just know what all is on his plate.

Everyone live their lives according to what is important to them. I have lived my life according to how my mother was feeling (I will explain that another time). But I recently saw a post saying, "once caregiving is over, there is no going back to what you use to be". For now, I got to adjust to what maybe the new normal...

Lord, Give me strength...

A change is gonna come...

At least that is what I'm praying for. As I mention it has not been good these past 2 and half months. It could be the disease is progressing or the lack of sleep and rest. Today has me believing it is the lack of sleep. Once again she didn't sleep well and did not recognize me when she came downstairs. Let me explain, she has Lewy Body Dementia and one of the symptoms that come with it is hallucinations.

This is the part I do not handle well. She looks at me and see a different person and when she ask where I am, it's like someone stabbed me in the heart with a knife! They tell me I need to "go with it", but I am not strong enough to do that. I get very emotional as soon as it happen. What really get to me is the fact that she thinks these people are real!

I'm trying the best I can to live in her moments, but I am not good at pretending I see what she sees. I tend to always say the wrong thing and then everything goes south from there. Especially when it mostly happens when she's tired and her mind is seeing what it's sees. I am still in rookie season with this, and I don't want to be in this season at all. I saw my mother differently when she is in her 90's, but not with Dementia. But if there is one thing it has taught me, to take care of my brain health.

Stress and worry is the biggest killers of the mind. And now I am learning how much she has worried and still do, even when I am downstairs watching TV.  God has me here for so many reasons, and I need to stay closer to Him, more now then I have ever been.

Don't leave me Lord...