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...