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...