Back home...

After 43 years, I am back at my family home. Never thought it would be to care for my momma, but now that I have relinquish the keys to the home I raised my son in, I'm not sad at all, just glad I can be here for the woman that raised me, no matter how hard it may be.

The constant worrying she was doing about me over the years, kept me from doing so many things I wanted to do. I know most would not let that stop them, but my conscious wouldn't let me be selfish that way. So now all the worrying and stress has taken its toll on her. This past year and half has shown me just how much she stress and worry, even when I am in the house with her.

So, I trust God more now, I pray more, I'm becoming Ms Domestic too! 🤦🏾‍♀️😅 And most of all, I need to be here, no matter how hard it can be. 🙏🏿 Yet, I do pray that more family will step up to the plate, and offer more assistance to me, but to be honest, I don't see that happening any time soon. Not sure what it is with family when it comes to sickness that actually needs assistance. It seems everything else is more important than helping love ones. I maybe wrong, and I pray it's not true.

I will say this, I am so thankful for those who has helped me along the way. If it wasn't for them, my move back home would not have been as smooth. God has truly watched over me during this time. The most stressful time is when she doesn't recognize me when she looks at me. That is really painful for me to endure. So as I sit outside to give her mind a break, I pray that when I go back in, she will see me again.

Now you see me, now you don't...

Sundowning 2.0...

13 straight nights of sundowning with mom. It is so hard on the both of us. I have not handled it well also. However for her, she does not remember the night before, but for me, I do!

I got no sleep a few nights ago, yes I am still tired and today, I managed a hour and half nap, after a night of firework war zone. I hope to nap more every day, and that depends on which direction her mind will take us.

When you are caring for someone by yourself, and no one is offering to relieve you, you can't do for yourself the way you need too and when you do, you need to find ways to decompress. Yes, I am doing what I can to take care of my mental health. Look, I'm not prefect and yes, I have loss it on my mother and immediately ask for forgiveness from God. I do apologize to her, but I wait after she has slept it off.

Yes, we are still sundowning and I know that one thing is driving it now, and that I am moving my things back home and selling my house. I have been going back and forth for awhile now, and finally closing day will be here. Mother's does not process what is being said properly, I am learning. It's like she has dyslexia with her hearing. My prayer is that once this is over with the house, that things will change in her mind too and she will let it go.

Wishful thinking, praying too...

Who can walk this walk...

Of late, I thought about why potential relationships never worked out for me over the years. To be honest, I thought about it a lot. They would start off real good, but sooner or later, I realize that I am the only one invested in the relationships. That is because I was learning just how selfish they were. It turns out they were pretending, so that I am doing for them. One of us would walk away...mainly me.

It wasn't until a recent phone call I got from someone, that God gave me an answer to my question through them. They too are dealing with a parent with Dementia, and they all take turns giving a sibling a break from caretaking. She is taking her turn and she says to me, "I thank God for an understanding husband, for allowing me to go and give my sister for a month".
That right there, had me looking back and it reminded me, that all the men I was involved with, were very selfish, that it was all about them, and that they would not be able to deal with what I am going through with my mother. The thing is, God knew this all along, and He removed them from my life.


Loneliness is a part of this journey for most caregivers, when caring for someone with a illness. I am learning that selfishness will not work as a caregiver, but compassion is a must. I am not a selfish person, but I am an impatient one. What this journey is teaching me how to let that go. No, it's not happen over night, but I can see it very slowly melting away. But those moments of sundowning, truly test your patience for sure!

Everyone can't go with you...

Early in the morning...

Every morning mother is faithful when it comes to reading the Word. I tend to miss here and there, but I work everyday to do better. This one example I need to maintain for myself.

But while I did my devotion time this morning, I was reminded of Psalms 118:8 "It is better to trust in the LORD than to put confidence in man". I have read and heard how majority of caregivers are doing this alone with very little support from family and friends. I did not realize how lonely of a process this is.

I thank God for two friends that I can call and vent too and they encourage me also. My brother does the best he can, for he too is in a caregiver roll and I continue praying for him and my sister-in-love, and there is a couple from my church that give of their time, so that me and a friend can go pack up my house. When they say He has a "ram in the bush", He truly does!!

However, I can still feel disappointed with my family and the lack of help, but on the other hand, I truly don't like asking others, who are not family to help. Like i said, I am so thankful for all they are doing, but I don't want to wear out my welcome either. My mother has gotten comfortable with them, and that is a very good thing.

What most don't realize, often during her sundowning moments, she thinks nobody knows she is here (our family home), and believes they are looking for her elsewhere. Of course she doesn't know where this other house is. Do they know this? Yes, but I am done trying to make grown folks do the right thing!

I know God will supply what we need, and we thought we had what we needed, when He put our love ones in our care. But our eyes were open quickly to the truth. This is a rough road, but the road, and I am going to need God every step of the way, because I can't do it all by myself. I know He's got me!

Reqret is not going to be me...

Will it go round in circles...

I am tired of this thing being on repeat, and I have no way of stopping it. Knowing that this disease will progress, but not knowing how fast, how slow or even when it happens, but how WILL I know?

They say redirection is the way to calm their mind during sundowning time. But not with my mother. She doesn't want to hear anything I have to say or suggest. So what do I do then....walk away or ignore her. Yeah, I know that is not a good thing to do, but when your hands are tied and you've run out of options...just walk away Nita.

One morning she woke from a dream, but still in the dream. I know that sounds weird, it's sleep walking and I had to slowly get her to wake from it. Doing this she will become confused for a moment, but not this time. The confusion lingered for an hour and I remembered what the doctor told me to try. So I gave her a couple of Tylenol, got her to sit in her recliner once we were downstairs, turn on the TV and in about a half hour, she began to calm. She calmed down so much that she actually fell asleep and took a nap. The rest of the day went very well, with only a little bit of confused moments here and there. 

That was Saturday morning and right now for two days, she recognized who I am when I first get up for the day. You have no clue how that makes me feel and the days have been going well too. Her confuse moments has been low an manageable. I thank the Lord for these days. Like I said, this disease is a roller-coaster, and you don't know what is going to happen each day. 

It is a stressful time for me, because I am trying to pack up what I will be moving here from my home. At 66, this is a lot to do and take in. So I pray that God gives me the strength to get through it all. 

The cycle...

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...