Stop Flipping That Switch!...

There are those who can turn their emotions on and off just like a switch, and depends on how you view it, it can be a good thing for that person.  But in my mother's case, it's not a good thing and it sneak up on you too.

Yesterday was somewhat of a good day, all systems was mild and comfortable, that I can deal with whatever came my way, but today.....even I didn't know if I was coming or going. I wanted to leave so bad, but I knew that I couldn't do that.

Last night didn't end the best, a lot of confusion and anxiety just before going to bed, and this morning was the continuation of last night and it pretty much didn't let up. The thing is, it hit me when I wasn't ready, I just got ip from a good night sleep, so I couldn't adjust fast enough and I became frustrated and angry! Yes, I yelled at my mother and I pray she and the Lord will forgive.

They tell me it will happen, me losing it, because this disease is so unpredictable. You truly don't know what's going to happen each day. A few weeks ago, I had another day like today, but more intense (if that's possible), and she was doing things that, well let's just say, she was making things comfortable for people that she could see, and I couldn't see.  She finally ran out of stream around 2am the next morning.  By the way, my mother is 93. 

I pray the higher dose of one of her medication will calm her back down, where it is more manageable for me. This disease has no cure, but they can treat the symptoms, for as long as their minds will allow.

We must take care of our mental health. Keep stress as low as possible, refrain from worrying about every little thing, but yet exercise our minds in a good way, by keeping it active and well rested.

The mind is a terrible thing to waste...

12 hours, that's all...

Back in the day I could sleep 10, 12, 15 hours with no problem. But now I'm barely getting 7 hours of sleep at night. Dementia is kicking my a** I really mean that. The things I've been going through with it because of my mom, is because she has it, and it's too much. It's too much for one person. I will admit when the doctor change when she should take one of her medications, everything's been cool. Actually it has been cool for a month. The confusion and today, this is cruel and unusual punishment. I should call child services. hallucinations has been low.

This past week we had some rough moments,  but last night was the worst. You see her sleeping pattern has been off this week. When she gets 10 - 12 hours of sleep, things are milder, but less then that, or more then that, the day doesn't start well. The day is pretty much in sundowning mode, with last night being the worst.

She has a somewhat of a normal time she would go to bed, but that's been hit and miss. But I didn't trip and while working on some crafting items., of course she falls asleep in her recliner. I let her sleep for a bit, then woke her at 8pm to get her to bed. That was the beginning of everything spiraling out of control. From that point on, all types of craziness happen. It took 5 1/2 hours to get her into bed. I was so tired and I managed to get 4 hours of sleep, but I am still tired.

She is not herself this morning and need more sleep also. My prayer is that she goes to bed at a decent time tonight. I wish I had a video of everything that took place last night. I did however recorded when she made up a bed for imaginary children. 

I'm a crafter and do things to help me relax after a long day of caregiving.  Well, she interrupted that, by fusing and complaining about my things being out. If you are like me, you don't like people touching your stuff, and she was doing way to much in that area. So instead of relaxing, I was trying to remain calm. That is the hardest thing to do, because they become young children when Dementia is a part of their life and very aggressive too.  I know talking to her in a calm voice is the best way to get through to her, but my mother is different now, she tend to argue and pick at me, which is totally out of character for her. I find myself walking away and going outside, in order not to disrespect her. Yes, I have failed a lot of times also.

Being a caregiver for someone with dementia is so hard to do. They will go through so much mentally, that you won't know if you're coming or going, that's pretty much everyday. You don't know if you will be fighting or relaxing each day. I don't want to have burnout like so many caregiving for a love one, so I need my crafting down time to keep me sane!

Need all that sleep...

Something is happening...

This illness will have you seeing all types of doctors. We recently saw a neurologist, and I knew they take care of the brain and knows how it functions and so forth. While discussing mother, I learned one of her medications they like to give it to them at night. Why? Because they want them to sleep all night, and I am all for that! Actually, resting is the best thing for them too.

One of the side affects is hallucinations with that particular medications.  I was giving it to her at noon, and let me tell you, sundowning is no joke and mother already has hallucinations, well I felt it did nothing to calm them, but made them worst. So once I started giving it to her at night, the level was lower with the hallucinations.  I wish they would just go away, but unfortunately, it is a part of the disease.

For one week of her taking this medicine at bedtime, I am sleeping better and feel more relaxed until these last two days. I guess she's making up for the little hallucinations she had this past week. Nothing I say is satisfying to her. Once again, I am wrong about everything. I have to do my best to calm myself so that I don't yell, because loud noises is not good for them either. Yes, it is just like dealing with a child when she is sundowning heavily.

However, the week of it all being mild and going to bed at a decent hour, I would love for it to stay that way, but the reality is, it won't.  No one should have to live with this debilitating disease. The type that has no cure and will eventually end their life. My prayer is that my mother doesn't leave her, not knowing who I am. But what I am experiencing with her now, I'm afraid that she won't. So I will leave it in God's hand.

Every little bit helps....

Say NO one more time...

It has been a rough month. Yes I know I say this pretty much all the time. But there are two things I am so tired of hearing..."I want to go home" and "no"! Why ask me who did this, that or ther other, and I tell you it was you, because your mind doesn't remember and you tell me "noooo", grrrrrrrrrr 🤬

My mind is not fully programmed enough to not react or answer questions/comments that a normal person would ask. Dementia brains do not function properly and never will. Granted there will be moments where their old selves will emerge, and we need to enjoy those moments when they appear, but once there gone, we now have to be careful of how we handle them. This is where I am still learning how to do.

I am there for everything with my mother and doing my best to be quiet, not react to things she maybe doing. There are moments where I have to step in to keep her from hurting herself.  However, I have never hated a word so much like I do now. And I need to get a grip of my reaction to it and other things.

You know, we all want to be able to just be ourselves around our love ones and others, and yet, this ugly diseases will have you lying to them,  just to have some peace. And I hate having to lie to my mother. 

Once before she finally went to bed, she left a semi mess in the dinning room. Instead of me putting things away, I left everything where she left it. So the next morning, she saw it and told me how she found her shoes on her recliner and asked me who did that. I told her how she left the room the way it was. And you can guess what her response was...."nooo, somebody else did it". 

Unfortunately I kind of lost it and had to walk away. That's what I hate the most, I have to walk away before I disrespect her. This new normal is going to make me crazy if I don't get hold of my emotions. Now I have to adapt to how her mind works and no, I don't want too, but I got to stop fighting it, but how?


Screw this!....

Where is the love...

A lot has been going on and I am still trying to make life as normal as possible for myself. I heard it, but I honestly didn't believe that my life would come to a stand still. The crazy thing I learned is that majority of the caregivers in the world, is doing it alone. Not that they don't have immediate family members, just the fact that when it comes to helping an ailing family member, all of a sudden nobody has time, nor make time to help. 

I would normally try to write when I'm relaxing in bed, and now, I am falling asleep almost as soon as my head hit the pillow. I force myself to stay awake to write, I am coming to learn I need to give that up, because I was just messing up! 😅  

With all the alone time I have, I think about not having a support system the way I though I would have. When I say alone time, it's when I am in my bed, and in the morning before she gets up or when I finally have moments alone before going to bed. I truly feel for those who have an unsupported spouse. Yes, I have read so many post of the nonsupport or the separation because they could not handle it, and of course "I didn't sign up for this" prople.

People will get sick and there are those who may not get sick enough that they need help, but we are to help one another in need. Yet, we choose what type of help we are willing to give. Granted, I was thrown into this with my mother, or I should say blindsided with it. Of course, I will do what I need to do for her, but I learned very quickly how a crisis has no respect for your time. 

For us single people who wants a relationship, those dreams maybe dreams deferred. And if you are in a relationship and depending how supportive they are now, trust me this will be the ultimate test about their support. Thing is, at the end of the day, and you have no one to lean on, to encourage you or just hold you as you decompress, you realize just how alone you are in this journey as a caregiver to a LO (love one). Face it, nobody wants to be alone, but not everybody has the type of compassion one needs to make it through. 

 

Loniness is a b#$%!....

Merry-go-round...

It's like a merry-go-round and I am trying to come to terms with the fact, I can't get off! Who would purposely put theirs theirselves in a situation where, pretty much each day repeats itself, or comes pretty close to it. There is one thing a person with Dementia will say, "I want to go home", regardless to the fact, they are home. I for one, have not found the right words, to help reassure her, she is home or to just redirect her thought patterns. So this is just one thing I hear just about every single day.

I just want to get off this ride, but I can't! You tend to hear the same thing each day and it's hard to come up with something new to say back.  My prayer is they find a cure for this disease! Nobody, not even my worst enemy should go though this. It's just that they aren't aware and can't remember day by day. 
My brother came by and the next day, she was in a panic about him that she hasn't seen or heard from him, although he came by the day before. Of course he let her know that he had came by, and her Dementia mind, told him he did not. That's the other thing, when you tell them about something or remind them, you will be totally wrong. 

The other direction of this merry-go-round is when I need to run to the story, home or the pharmacy, normally I can leave with no problem, but of late, fear creeps in and she will be upset at times or a bit scared, by the time I get back. But late, she always tell me about who stopped by while i was gone. Trust me nobody came by.  This comes out of a state of confusion.

You know I, and so many pray that each morning we get up, that day will be different.  Yes, we know their old selves won't be there, but the close we can get to that person, then we know we will have a much better day.

Round and round we go....

Relationship or the lack of...

There are times when you love being in a relationship, then there are times you don't want to be bothered.  But when you find yourself in a situation and just need some support from a person who can hold you while you cry in their arms, and their voice gently tells you "everything is going to be alright. I got you!". Yeah, this is one of those times I need in my life.

But guess what? Not everyone is built to be this type of person for a relationship,  especially for what I'm dealing with. Maybe this is why all my relationship never worked out. They were more needy then my mother is now, but her needs are due to her illness, theirs were just wanting a woman to do and care for them!

Recently, I was up for 38 hours, because my mother would not go back to bed. In two days, she got 3 and half hours of sleep, I got 28 mintues. It was so hard watching her fighting through the tiredness of her mind and body. She fought it and the crazy part is, with this disease she doesn't recognize when her body and mind is tired! During those 38 hours, I cried for her and myself because I am doing this alone and more so, i was extremely tired..🥺

I did not know just how stressful this caretaking was going to be, and I been doing it now for 9 months.  Because it is full time and I have let a lot of things I love to do go for now, because I don't have any one to step in to help out. Hell, I assumed family was going to step up and help out. That's what I get for thinking!! But now I truly know how things really are when a person is in need, both permanently and temporary. We all make time for temporary. And you would think, they would help out when it is a elderly person.

Yes, I know not all partners are willing to help, but with the right partner in your life, things can be less stressful and you have someone to help right beside you, and comfort you when needed. I sometimes wonder if God was keeping me alone because of this time in my life? Or was it me getting ahead of Him, because I was lonely and wanted somebody? Probably both, so now because I got ahead of God, I'm now unable to have a life of my own. What kills me is, people keep telling me "you need to take care of you" or "you need to get away for awhile"!

I know I have said all of this before, and people don't think before they speak, and I know most are ignorant to the disease I am dealing with every day. Granted, I don't know everything about it and each time I find a bit I time to read about it, I find myself falling asleep. But being able to have time to myself, is non existent. So trying to have a relationship now, is totally out of the question, unless God delivers him right to my doorstep.  I do have to laugh, even though I wasn't in a full relationship with this person, but as soon as he learned what my mother has, he totally ghost me. I knew he would, because while dealing with him, I quickly learned he doesn't like being around sick people. 🤦🏾‍♀️

Having the right partner with the right mind set and a willingness to be your covering and a help meet, is a God sent, because that is the only way for me and anyone to have the right partner in our lives. I know I have to have patience and do what I need to do with the situations in my life. Right now, that's my  mother and her needs for as long as I possibly.

Yes, I don't want to be alone...