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...

Just my imagination...

Now days we're living on repeat. The repeat of mom not recognizing me every morning.  I wish there was a sure way of making that change for her, but this is part of the disease and I hate this for me, and mainly for her. Lately it is not until early afternoon that her mind allow her to see me, her daughter. The worst part is, she believes that the images  of other people are real.

Trying to  convince her differently creates confusion, agitation, anxiety and more. I am often calling on the Lord to keep me strong and not give into my emotions. But it is so hard not to do. When I said caregiving is not for the weak, well it is true especially for those with no training and very little help.

Saturday evening of all nights (because I need to get up early in the morning), she has a major sundowning moment which lasted for  an hour. We had a full moon recently and those make it worst for her and now with the time change, it is not helping either. At least she knows who I am in these moments, but not knowing why she is in her own house is what drives her sundowning episodes. 

However, Monday she did not recognize me the entire day, and another major sundowning session that lasted for 2 hours. It took everything in me not to yell and scream!! It wouldn't done any good, it would just make things worst. And Tuesday it was around 2:15pm, when I learned she was still not recognizing who I was, I had a mental breakdown and I needed to get out of the house. So I sat in my car, called two people and broke down crying. It has now been 31 hours, with my mother not seeing me when she looks at me. Can you imagine how that would feel? Your mother not recognizing who you are? But it took me going out the house, to get her brain to finally see me.

Do you see me...

Person in the mirror...

The fact that Dementia will affect a person memory is one thing, but when they don't remember who you are, is a whole other level of hurt for you! My mother was not recognizing me first thing in the mornings.  I know the doctor said it is part of the progression of the disease. But I am not claiming that! Because there were times when this happens, and I would leave for an hour and come back, she would recognize me then. But that wasn't happening for awhile now. Yes, I got fearful.

Then one morning after she got up, I fell back to sleep and woke a little over an hour later. When I got downstairs, I asked how she was doing, she told me, "I'm fine", but she said it in the way my brother would said it, and she told me herself that is how my brother says it.  I almost started crying, but instead I said "thank you Lord"! You have no clue how it made me feel. My mother saw me again!

It has been almost a week now, and only had one day when she didn't recognize me first thing in the morning.  So if I have to come downstairs a little later, then that's what I will do, but it helps me too, for I need the extra sleep. But I know there may come a day that she migth forget who I am, but I pray I am much stronger then I am now, so I can handle it.

I see you...

Night Moves...

I'm a sleeper and when my sleep is interrupted, I am not easy to be around..normally. But now, I have to move differently and it's not easy for me. I have to actually reprogram my thought patterns, because it is my mother who is interrupting my sleep, but it's not her fault, it's dementia's fault.

For awhile it seems every other night she was having nightmares. Most times she did not totally wake up, but was acting out what was happening in her sleep. And it would last anywhere from a couple of mintues to fifteen mintues, regardless, I would be awake for sometime after and often, sleep would not come to me for the rest of the night. Maybe that is why I am tried now!

For the pass couple of weeks, I am using a air freshener diffuser in her bedroom.  I picked up a scent called " Calm" by Febreze prior to the diffuser, and I love the scent. It was actually calming, and thought I give it a try in her room. So far she has been sleeping better, which is a good thing. I am actually starting to sleep better too, but it is going to be awhile before I am fully rested.

Sleep is important for those with Dementia and I believe it slows the progression of the disease. Funny, sleep is the one thing most do not get enough of. Like I said, I'm a sleeper and I am missing my 8 1/2 to 10 hours of sleep a night. I know, who does that! I did until Dementia came into my life. Now I am learning, she is not sleeping straight through the night, and that is a problem. Sleep is crucial for everyone, and more so for those battling Dementia.

Calgon take me away...

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...

All Night Long...

One night, I was awake at  2:30 am. Why? My mother had a nightmare and it took a few to get her to calm down and go back to bed. As for me, I am unable to fall back to sleep, seeing I didn't get to sleep close to midnight.  It took me a long time to settle down and when my mind was ready to go to sleep, she is awake again at 5 am, confused and thinking it was time to go.

I was able to get her to lay down again, but I'm afraid the high winds are not going to allow her to go back too sleep.

I am working to get her on a schedule with a lot of things. The two main things is when to eat and bedtime. She did go to bed close to the time I would like. I have notice, we have a pretty decent day, when she gets 12 hours of sleep. Of course that's not the case on today. I believe we will be napping most of today, at least that's is my pray.

But it seems that at least once a week of late, she has been having disturbing dreams, but it came back to me, those type of dreams are not of God. So in my nighttime prayers, I ask for calming of her mind as she sleep and rebuke satan. I learn early in life, by way of the scriptures, if you rebuke the devil, he will flee.  Of course as a child, I'm not sure if I believed it or not. But lately,  oh yeah, I believe!! I been rebuking him like crazy and God truly stepped in.

Now, I'm not saying all is back to her baseline, but we are slowly getting there. I am really working on not allowing her confused mind to upset me so much. I just have to remind myself, it will be much better in the morning.

It's a merry-go-round...

Transparent Moment: Walking in her shoes!

I saw a post in a Facebook group, and it cause me to take a step back. I have become a 2nd generation caregiver in my family, as well as others. My grandmother, my mother's mother, was a caregiver to her entire family. Meaning she cared for her parents, siblings, husband and children, until they left this earth. My grandmother left us at the age of 92. Here I am caring and helping her baby girl, my mother.

I know my grandmother had to have been tired, but she never showed it. At least I didn't see it, nor heard it in her voice. I'm sure she cried a many days and nights, got angry and more. How I wish I could talk and get advise from her now. My cousin often tell me, "you're Liz Harris granddaughter". It's time to live up to the example that went before me. I am doing the very best I can and I need the Lord to help me along the way, the same way He helped my grandmother.

I'm Liz Harris granddaughter!!!

Every Breath You Take...

You all that have children, do you remember the first time they slept all night? If you were like me, did you jump up and ran to make sure they were breathing? Well, unfortunately, I am there all over again with my mother. She will be so tired and when she is finally taking a nap, I find myself watching her chest to make sure she is breathing.

She is oftentimes tired and won't nap, but when she does nap, and her mouth is open and head in a weird position, I am always checking. Now I know it is not her time, but I guess her age makes me do it as well. I heard to many stories of how love ones will lay down for a nap and passed away in their sleep. And I know that is my mother wish, is to go in her sleep. But am I truly ready for that?

Currently I'm dealing with some serious sundowning and this hasn't happen for a little over a month. Of course, if there is a need to breathe, it is during these moments because it becomes very chaotic! Nothing I say or do will redirect her, and everything I say or don't say is a lie, so I can't win. Oftentimes during these moments, her vision changes, she doesn't see me when she looks at me. I try my best not to let it get to me  because I know it's the disease. Be honest, who wouldn't be in their feelings when their love one doesn't recognize them?

However, I can finally breathe for a bit, for it appears we have turned a corner. For how long, I don't know. Granted she is still having moments of not seeing me, and I am doing my best to power through it. I thank God for every quiet moments I have with her, because when serious sundowning hits, I realize I hold my breath for a long time.

💨💨💨...

Here we go...

First, Happy New Year to you all! Life with mom is starting to get back to her baseline of normalcy. Now I know, I must brace myself for the aftermath of fireworks and shooting guns to celebrate a holiday, do to my mother.

You would not believe the level of confusion that started at 12:30 am new year's eve!! I handle it the best way I could in a calm voice, but how I wish I could find a way to silence the noise for her And it's just about that night, it alter how her brain process situations and it will be days before it changes back.

Today, almost a week later and still having issues. Granted it's not as bad, but somethings are irritating and I am still working on how I react to the state she is in. The one thing I got to remind myself, that it is the disease and not her that has her behaving and thinking the way she does.

Although she is going through major changes, I am going through them too and more. I am doing my very best to keep a level head and maintain my level of sanity! I see where so many Caregivers are going through it mentality with their love ones, and I won't lie, I was too at the very beginning of this journey. I am better, but there are moments where I could just scream and trust me, I have done that. People tell me it will happen and that's okay, but I will feel bad too. Now when I do lose it, I apologize to her later once her mind has calm down. I also ask God for forgiveness too.

That may sound crazy to some, but it's about peace of mind and besides, she's my mother and yelling at her is so disrespectful, but I can't allow this disease to make me crazy too and most of all, disrespect my mother. She needs me in so many different ways. So my prayer is that she get back to a base where it is less stressful for the both of us.

Happy New Year!...

What are you doing New Year's Eve...

I have lost touch with so many over the course of my work life. Now living and take care of my mother, how is it possible I have lost even more. What's crazier is that those who knows my situation, will ask "what did you do for the holidays" or "got plans for new years eve?". I hate looking at them crazy or wanting to say what is really on my mind. But why do people assume you can just stop what your doing to have fun when your a caregiver?

It is then when you realize how insensitive people are to others situations. I don't like embarrassing myself, so I try my best not too, and I have had my moments of embarrassment,  and trust me, I feel so bad afterwards.  But I do try to keep up with others situations and encourage the best I can. Right now, I am finally getting my pray life back and I add others to it, when I know their situation.

So this new year's eve will be different. I normally go to a watch night service at my church, but tonight will be the first time I won't be attending.  My mother is in bed around 7:30pm, and she needs to have a routine and structure. Trust me, there are those who tell me to "go out" when she's asleep. I know, that sounds like a good idea, but I know for me, that would be the time she either won't go to bed or wake-up while I am gone. I do not want to think about how that would affect her waking up and I'm not there.

Right now my fear is, people shooting off fireworks and guns while she is asleep and waking her up. I remember the 4th of July, the fireworks were right outside her window and it scared her out of her sleep so bad that she believe someone was trying to kill her. I cried that night trying to calm her down. We didn't get back to bed until 3am!  Trust me, I will be praying tonight for her peace of mind and for mine too.

So I pray the coming year, will be better then this year, more calmer and healthier and I pray that you all have a safe new year, and that blessings will be plentiful throughout 2026!

Happy New Year!...

Transparent Moment: Christmas Day Dinner!

I was on pins and needles on Christmas, because it was the first time, I had to do all the cooking for me and mom. I normally cook the Cornish hens and she does everything else on Christmas. But now, I am the cook for her everyday and truly wish I had stuck around when I was younger while she was cooking dinner, instead of sneaking outside to ride my bike 😅

However, with the help of my sister-in-love, I was able to make the dressing for the first time. Did mother enjoyed the meal?  Well lets just say, she had seconds at dinner and another serving later in the day! 😁 It was the most food she has eaten in a long while. But what made me cry this morning, was when she told me, "you cooked all day yesterday! You did good and I'm so proud of you" 😭🥰

Best Christmas Ever! 🎄

Santa Baby...

Merry Christmas Everyone! This Christmas for the first time in life, I am cooking dinner for my mother and I. There is so much to cooking that she doesn't  remember, so I have to rely on Pinterest for recipes. Like cornbread dressing! I love my mother's dressing, but she doesn't remember all she does to make it. She was not one to measure ingredients, because she has made it some many times that she used her eyes to measure.  And now with dementia, that too has failed her and of course nothing is written down. I guess if I had my priorities straight as a teen, I would had spent more time in the kitchen with her, instead outside riding my bike all over the city. Behold, I remembered my sister-in-law learn how to make it, so i got some instructions from her.

I believe we all have a favorite dish our mothers made that we couldn't get enough of. Mine is chicken and dumplings. She would make her own dough, and of course she doesn't remember what all she used to make it. So years ago, she told me to just get a can of biscuits. I did and of course it didn't taste exactly like hers, but it was close enough. I am determine to make my own dough the next time I want to make them.

However, my dinner is almost complete, and I can't wait for mom to taste it. But she did taste the dumplings on yesterday and loved them! You have know clue how much that made me feel. To be honest, I haven't cook this much in the past 30 years. And I'm starting to enough it and my momma need to eat. I am so glad she is enjoying it. Well, you know she is, when she ask me every day, "what we eating today". 🥰

So my prayer is that she and I have a wonderful day today and I wish you and yours a.....

Merry Christmas 🎄...

I love your smile...

Sunday, a few people told me how good it was to see me smiling. That caught me off guard, because I thought I was smiling all the time. But on the flip side, I had been tired for sometime and normally I can fake it and not show whatever I was going through. Life with mom is still stressful to a point, but not as intense as it had been.

I had a conversation once with someone about flirting and how I never could and didn't know how to flirt (and I still don't). They told me all I needed to do was smile. I never tested it out, and then again I haven't met or seen anyone I would want to flirt with. The way my life is now, I have no time for another person in it, and I need God now more then I ever had.

I understand not everyone believes, but I remember how He got me through my father sickness and that was rough. Or when my son moved away. I cried like a baby for a few days, and asked God to watch over him and keep him safe. God has not let me down, He has moved mountains for my son and he is doing well.

When it comes to my mother and her Dementia, it took me a year to realized that I had not gone to God to help and guide me through this. So a few weeks ago, I brought my Bible, devotional books and ordered a new journal to write my prayers in. I now believe my time with God is why my smile is back and I feel more rested as well.

I believe smiles come from a deep place within us. A place of calm, comfort and peace. I am still struggling when my mother's sundowning moments become intense and I need to do my best to remember where my help comes from to handle it. It's hard to do, but I got to do better for my own peace of mind.

I do want all my smiles to be genuine, and I now see, building a partnership with God, is going to keep my smiles growing from deep within.

Where is your smile...

Transparent Moment: Happy Birthday Face!

Today is the most important day of my life! It was on a Sunday 45 years ago, that the greatest love of my life, came into the world. I really didn't know just how must I needed him then.

You see, I didn't want children and people are still surprised about that. Not sure why.  I know people feel that it is a woman's duty to have children, but I know scripture wise, there are those who purpose is to be single, so they can do the work of the Lord (1 Corinthians 7:34).

This now grown man, brought into my life unconditional love 45 years ago. Now I'm not saying my parents didn't give me love, but I am now the parent who is feeling the love a child gives you. I have to remind myself that I did not want a child and did everything you can do, to make sure that didn't happen. Well, we now know I totally failed! But God had a different plan and knew I needed him, in so many different ways.

One thing I do remember, when I heard his first cry, all I went through before that moment disappeared and was replaced with a love I can not explain. Today is his 45th birth date, and I still pray to God to continue to keep him safe and protected, and He has not failed me in that pray!!

Happy Birthday my Face! 🎂🎉🎁