There's no place like home...

Within the world of someone with dementia, they always want to go home. For most and my mother, they are home, but telling them that, most will not agree. Now I am learning for them, it may not mean a physical home. If you ask them where's home, often times they can't tell you.

For the past 2 weeks, every night I hear "I want to go home". I am suppose to redirect her with something like, "well, we will stay here tonight" and " lets see what happens tomorrow". For her, it doesn't work and depending on how tired her mind is, she would have a mental breakdown.  Trust me, it is not for the weak. I learned for my sanity, is to just go into another room and 90% of the time, it doesn't  work.

But now we're into our 3rd week and I believe the higher dose of medication is kicking in. The days are filled with a lot less sundowning affect, but one thing has changed, instead of her saying, "I want to go home", she is asking "are you taking me home". Am I happy? Somewhat, but there are still other behaviors still present and I know that it will always be, just don't know how intense and how long it will last. When I say "last", I mean in hours!

Now I know when she says "home", she is talking about a physical place. I believe it is my house, because she ask is she is staying here at my house.  My prayer now is that she goes to bed at a decent hour every night!!

This is truly a one day at a time life...

Transparent Moment:

With dementia, you have to change your way of thinking to be able to handle the changes going on in your love  ones brain. Trust me, this is the hardest thing to do, especially for me who has no patience, but I'm working on it!

Live & Learn...

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!....

What is it really...

I now wonder what I need to do to keep my mind healthy. Right now, my mother has no appetite,  so she is eating one meal a day. I believe the change in dosage of one of her medications is the cause. But looking at the side affects, it should increase her appetite! So what the hell is it then?

On the other hand, yesterday she actually ate more then she has been in the past 3 days. I guess they go in cycles of different behaviors. But it dawn on me, I need to keep Ensure for her, when she isn't eating, and when she is. To be honest, she eats like a bird, so I know she isn't getting the nourishment her body really needs, as well as resting it too.

It is like dealing with a 2 year old at times. She was in panic mode all of a sudden. In her mind, she thought we were going somewhere and I never told her that. All I did was give her an Ensure, and everything went downhill from there. It went from thing to another, and where her mind went, I needed to shut it down as quickly as it began.  I got her to lay down on the couch while I sat at one end. Can you believe she went right to sleep!  I hope I won't have to do this everyday! 😳

This disease is so cruel to them and their love ones. I have seen how napping helps her, and I hope it does this time around. It helps to give an already shrinking brain, a time to rest and reset. Each time, I think about myself and what I need to do, to keep my brain healthy, there is one thing I wish I had right now....someone to help and love me when this is all over!

I too need help...

Sleep, just want to sleep...

First off, if you find yourself caring for someone with Dementia 24/7, you can forget about sleep....at least that is how it is for me. See, I am a sleeper. I love to sleep, I love 8 to 10 hours of sleep a night. I'll be happy with 7 and a half, but living with my mom, I haven't been well rested for 8 months now.

So now, with the help of medication along with melatonin, she is getting plenty of sleep, so you would think I can too, but I can't seem to do that. I know it is because of the unknown. Early on, she would have nights where she got up in the middle of the night thinking it was morning.  Let me tell you, it was always at the times where we had somewhere to go the next morning.  

So guess what, because of that, this sound heavy sleeper, has become a light one, and I find myself checking on her whenever loud cars drive by, or the neighbors playing their music loud, and let's not mention fireworks!! The 4th of July was crazy, and scared my mother so badly, to the point she thought someone was trying to kill her!! 😢 And me, I didn't get much sleep that night either!

I thought about taking a melatonin, but I am afraid I may sleep too soundly and would miss something with her during the night. Then their are those who say, "Just take a nap when she does". Yeah right!! She has never been one to nap, so I can count on one hand how many times that has happened!!

Until I can get real help, someone(s) that are willing to give me a few hours break, I will just be sleep deprived for a long time.

Zzzzzzz...

Just thinking...

I was talking with someone and they said that it seems, cancer and dementia is run rampant in this day and time. Maybe it is, or maybe we just didn't notice until it came knocking on our door. Ny mother, who is the sweetest and most caring person I know, to have to live her final days in a world of confusion, agitation, hallucination, and so much more, is not fair!

Then I had to start looking deeper. As I look back over moments of life, I come to realize, that she lived in a world of fear and worry. A lot had happened in her life, and I realize she was hiding a lot from us. I can only imagine how much of a toll it took on her mind. I know stress and worry is a big problem and it has created mental health problems for so many.

I was telling them about I am what they call a "rainbow" baby now days. And when I looked back over the years, I just thought all that allowing me to enjoy my youth, came with a cost for her, and that is worrying about me out there enjoying my youth.

Of course parents are going to worry about their children, but when the worry continues to grow as they age into adults and beyond, I now see that became a problem. To be honest, I stop living life in my 50's because of the excessive worrying my mother was doing. Sounds crazy doesn't it? And now, here I am, 65 living with my mother, because her mind has been damaged of not taking proper care of it. She allowed the constant worrying about me, my brother and my son, to put her mind into a world of chaos.

I had decided some years ago, once I realized the level of her worrying, to only share what is necessary for her to know. Because when she knows to much, she takes it on as her own and use so much energy worrying about it, when we don't worry that much about it, because we're working to work it out.

So now, we must think before we speak. If there are problems, we keep it amongst us. Right now, a close family friend, one of her best friends, has gone on to glory. But we can't tell her. Granted, she had not talked to her in months, so the dementia helps in this case, because it's like they say, "out of sight, out of mind", and I know she will remember her, if I were to mention her name. But I know her reaction to the news, send her into a state of confusion, which brings on other negative reactions.

So please, take care of your mental health. Your mind needs rest, food and water. Don't let worry and fear take over!

Live life..

2 and a half hours...

You don't know the hell I was going through the past 5 days.  The one thing I know about this disease,  is that sleep helps the mind, and that is the same for all of us!! When the mind is tired, you mess up, and tell me I'm lying!  However, the difference between a healthy mind and one with Dementia, is that the person with a healthy mind, will shut it down and get some rest. My mother doesn't recognize that. She doesn't recognize when she is tired to the point of exhaustion.

Today, she napped for 2 1/2 hours and I managed to get 1 1/2 hour nap, the first nap in I don't know when. But the good thing for my mother, she went back to sleep, 4 hours later. My prayer is we continue this for awhile. Have you ever tried to function tired, when you're old? I'm 65 years old, and this is a lot on me. I now have to make sure to exercise my mind in some way.

I know, you probably thinking why I am excited over a nap? If you have never been in my shoes, you wouldn't understand.  See, I am a sleeper naturally.  I am use to getting up around 9am or 10am. Now I am waking up when my mother start moving around. I'm not going to tell you what time that is. But someone told me they can't understand why I just can't take a nap when I want too.  Would you go to sleep on someone who is hallucinating about wanting to go home, or trying to go out the door, because they are seeing someone outside to pick them up, and there's no one there? No, you can't turn your back on a person suffering from dementia.

Right now, I should be asleep, but I just needed to write this. I love my sleep, but I hate what my mother is going through,  so I will do what I can, to see that my mother needs are met.

Sleep does a mind good...