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...

Oh, so we just going to continue this...

Yesterday and today, really made me want to up and leave. Of course my conscience won't let me, but when she get up, with the same crap she went to bed with, and I only got 3 hours of sleep, yeah I want to get the hell out of here!

To be honest, things have not been good since after her eye doctor appointment.  So I am running on fumes!! Then I have people telling me how tired I look, and turn around and say, "you need to take care of yourself". Like I don't know that, but do they offer to give me a break so that I can? Hellnaw!!! 

People just think I can drop everything and go take a nap, or go where I want, when I want. It's obvious they have no clue about dementia! Hell I don't either and each day you don't know what person is going to show up. Like this morning, the person that went to bed last night, got up this morning, a bit calmer and nicer, but still talking the stuff she was last night, and none of it made sense.

I am glad she went to bed at her normal time tonight and I got a chance to relax a bit before I go to bed. I am going to do my best to be in bed by a certain time, when she is good for the most part. I just pray, I get some help sooner than later.

I so need some rest...

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..