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#$%!....

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...

Reminder to self...

In Honor of someone you know or knew who has dementia. In Honor of all those I know and love and lost who are fighting Dementia/Alzheimer’s.

1a. Every time you enter the room announce yourself. “Hi Mom- it’s Margaret.”
NEVER ask-  Do you know who I am???  That causes anxiety.

1.  If I get dementia, I want my friends and family to embrace my reality.

2.  If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.

3.  If I get dementia, don’t argue with me about what is true for me versus what is true for you.

4.  If I get dementia, and I am not sure who you are, do not take it personally. My timeline is confusing to me.

5.  If I get dementia, and can no longer use utensils, do not start feeding me. Instead, switch me to a finger-food diet, and see if I can still feed myself.

6.  If I get dementia, and I am sad or anxious, hold my hand and listen. Do not tell me that my feelings are unfounded.

7.  If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.

8.  If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.

9.  If I get dementia, ask me to tell you a story from my past.

10.  If I get dementia, and I become agitated, take the time to figure out what is bothering me.

11.  If I get dementia, treat me the way that you would want to be treated.

12.  If I get dementia, make sure that there are plenty of snacks for me in the house. Even now if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.

13.  If I get dementia, don’t talk about me as if I’m not in the room.

14.  If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.

15.  If I get dementia, and I live in a dementia care community, please visit me often.

16.  If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.

17.  If I get dementia, make sure I always have my favorite music playing within earshot.

18.  If I get dementia, and I like to pick up items and carry them around, help me return those items to their original place.

19.  If I get dementia, don’t exclude me from parties and family gatherings.

20.  If I get dementia, know that I still like receiving hugs or handshakes.

21.  If I get dementia, remember that I am still the person you know and love.”

22. If I get dementia, please make a memory board of pictures with names so when people visit I will know they're friends or family so I don't get frightened by a "new" face.

Love always...

Sundowning 101...

In the world of Dementia,  there is a thing called "Sundowning".  What is it? Google says this, "Sundown syndrome, also known as sundowning, is a set of dementia-related symptoms that can include increased confusion, agitation, and anxiety in the late afternoon or early evening. It's not a disease, but a neurological phenomenon that can occur at any stage of dementia, though it's more common in the later stages". And for more information,  just visit the Alzheimer Association website.

For the past week or so, my mother has been in a state of sundowning and I know when it is going to happen. I did my best to keep it at bay, and do some things to help redirect her recently.  But of course, her stubborn, independent self, fight me on just about everything, and I have to live in hell pretty much every day!

Of course, after talking to her doctor and added a second dose of a medication she is already taking, things has not improved.  I had another day of staying up well over 12 hours. This time it was 18 and a half hours and  watching her through the camera,  it hurt my heart, to watch her in a state of confusion, but yet stubbornness. Crazy part is, there are days that things are almost normal,  and once you start putting your guard down, boom...back in the land of confusion and chaos!

And now today, I call it a meltdown because when she spends to much time changing clothes first thing in the morning, confusion follows right between. I was thinking it was because of the weather,  but now I see it's totally something else. She had two pretty good days, but last night after sleeping for an hour,  she got up like it was morning, changed her clothes and everything.  This was at 8:15 pm.  So her sleep was interrupted, not enough for the rest of the night and 2 hours changing clothes, does not make for a good morning.  I got to make changes to bring her confusion down, so I can get rid of the stress in my body.

Need a hard reset...

It's always something...

Mom started a new way to take a current medication.  It is much easier, but of course, it takes a bit longer for the new dose to get into her system.  So with that being said, she started the medication a week ago and of course things had been out of whack.

Sunday, she was up for 20 hours, and so was I.  Worst part, she pretty much stayed in a state of confusion that day, and I was exhausted to the point that all I did was cry that day.

So at one point, I said screw it. I went to bed and left her sitting up downstairs. Now don't get it twisted, I do have a couple of cameras to monitor her.  Of course once she went to bed, I had to go back down and redo what she undid.

Thank God for the online support group on social media, for now I don't feel all alone with some of the things I been going through with her.  I'm learning a lot of her behavior is a normal thing. Like saying how she wants to go home. Mind you, we are home, but learning it could be where she is in her mind in those moments. Like she maybe in a younger period of time in her mind. Or, and I did think this, because of the lack of company from family, and she has said this, that her family doesn't know where she is and probably looking for her.

I am also learning that the family member who is caring for their love one, is doing it pretty much alone. And some in the group have been doing it for years. They call Dementia "the long good bye".  I truly hate, and I try not to use that word, but I hate what it is doing to her.  No I don't have a life, but when I look back, I haven't had a life for years, due to the fact that my mother would be worrying about me, when I am out, especially at night. It gotten to the point, if she didn't hear from me before a certain time, she would call my cell looking for me. I believe this was the beginning of the deterioration of her mind...worrying and stressing.  It got to the point where I just stop going anywhere. But she still worried.

And even now with the Dementia, she still have the nerve to worry. If only I could get her to relax, it wouldn't be so hard for her, and for me. But we are beyond that stage.....

The long goodbye...