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...

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...