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Heart breaking every day
KLF
Posted: Friday, September 1, 2017 8:57 PM
Joined: 9/1/2017
Posts: 10


 KLF So I joined this website today. September 1. It''s been over a year since my sister''s diagnosis, which came a year or two after I knew in my heart what was happening. 

She lives with me, and I care for her. She is still walking, talking, but not able to complete a lot of daily functions. 
Today, after assisting her in the bathroom, she noticed her reflection in the mirror on the closed bathroom door. "My forehead," she said, looking at a vivid red scrape from a fall earlier this week. 
"Yes," I said, drying my hands then standing behind her. "I see it. But still cute!" I smiled at her and she smiled back. Then her eyes returned to her reflection. 
I watched her, looking at her self. Her disheveled clothes. Her long hair. What was she thinking, I wondered, this formerly meticulous woman. Was she noticing the changes, like I did every day? Then she spoke. 
"Excuse me." 
Then again. 
"Excuse me." 
And with fresh shock and heartbreak, the cold slap of reality helped me to see that she was talking to her reflection. Asking for it to move out of the way so she could exit the bathroom. 
It''s been a few hours now, and my heartbeat has returned to normal, and the sting of tears in my eyes comes less now. I''ve given her some ice cream, and now opened my laptop to join AlzConnected and write down this horror story that I cannot imagine speaking out loud. 

Wgonzo
Posted: Friday, September 1, 2017 9:40 PM
Joined: 1/8/2016
Posts: 190


Hi KLF!

Welcome & at the same time sorry for the reason you are here. But, you will get great support and information here. 

My mom introduced me to her reflection in the mirror as her half sister. I don't have to tell you how disturbing this was. So, unfortunately this does happen. Amongst many other behaviors that will shock you. Get as much information as you need. This is a great place to start.

Wendy 


KLF
Posted: Friday, September 1, 2017 10:04 PM
Joined: 9/1/2017
Posts: 10


Thank you so much for reaching out, and the kind words.

Sad to say I am very familiar with this disease, and have much experience professionally. These sad moments that tear at my heart are just becoming more frequent, as my little sister is in a stage of rapid decline right now. I know it will plateau, then resume, etc etc. 

I want to freeze her where she is still herself, this woman who lights my life. She has brought me such joy and taught me so much through her amazing strength. She is only 45! I'm in a near constant state of grief with rage at this monstrous disease. Moments like the one we shared at the mirror seem to remind me that we can't relax and reflect, for we will be slapped back to NOW! It's happening NOW, her life is being stolen NOW and there's nothing to be done about it.

I know to cherish my time with her, even when (incessant repeating, incessant trips to the bathroom, refusal to eat, up all night) it's a struggle to find good days.  I guess I wanted to document this nightmare at the moment. Those terrible, tiny moments when it's revealed completely, and my throat closes with grief, are coming more and more often. 

 


Wgonzo
Posted: Friday, September 1, 2017 10:33 PM
Joined: 1/8/2016
Posts: 190


My heart is with you. She's so young! Are you doing this alone? What support are you getting? This is such a horrible disease. Everyone is affected.
KLF
Posted: Saturday, September 2, 2017 8:46 AM
Joined: 9/1/2017
Posts: 10


My husband and I are caring for her here at home. Once a week, her retired elementary school teacher spends the day with her. An older sister used to help more on the weekends, but can't anymore.

I'm still working full time, because I'm carrying our health insurance. My husband works from home, and stays with my sister during the day. When I get home, I take over.

I know this is temporary, and all things have a beginning, middle, and end. We are in the end of the middle, and it's tough. Sleeping is a big issue; she used to sleep through the night, but not anymore. She's also super sensitive to meds, which often have a paradoxical effect, so we tread very carefully there. Seizures started this past February.

While she is still mostly herself, all the extra support required seems surprising, but luckily, my husband and I know better. We are familiar with caregiving, and have supported people with disabilities for many years. It's good that things like incontinence don't faze either one of us.


Wgonzo
Posted: Saturday, September 2, 2017 9:23 AM
Joined: 1/8/2016
Posts: 190


That's good to know. But, this does where out the caregivers so much. I hope you take a break to rest and re-charge.

Your sister is very blessed to have the two of you take care of her. And, as we all know we do it because we love them so much!

God bless you


grammyteacher
Posted: Saturday, September 2, 2017 4:57 PM
Joined: 1/11/2016
Posts: 422


I remember when my mom first didn't recognize her reflection. It was so sad but she was so cute. She whispered to me, "see that lady over there, she just keeps staring at me." I smiled and said, She must see how beautiful you are. She said, watch and turned to the mirror and said, " hi honey, do you want to come over here with is?" Then said to me in a whisper, "see she doesn't even answer." She was so sweet. After that we covered it removed the mirrors in her area because they made her nervous.

I have an amazing husband like you. We are blessed to have them, as are our loved ones. I am so sorry you are going through this with your baby sister


paperrockscissors
Posted: Saturday, September 2, 2017 5:12 PM
Joined: 1/7/2017
Posts: 48


KLF thank you for sharing. These kinds of moments are still further down my path with my loved one. It helps to get such a clear and visceral sense of the kinds of things to come.

I have a question. You mentioned seizures. Are these typical for AD patients, or does your LO have another condition that causes them? TIA

I'm still ver new here, but I think you have a gift with writing from the caregiver's perspective.


KLF
Posted: Saturday, September 2, 2017 8:35 PM
Joined: 9/1/2017
Posts: 10


Hi,

I'm sorry for what you're going through.

 In my layman's experience, seizures are connected to alz, but I found this quote for you from the website: "An estimated 10 to 22 percent of people with Alzheimer’s develop seizures. Those who develop seizures typically have more severe symptoms, and they progress more rapidly. After death, autopsy reveals that those with seizures have more widespread loss of brain cells."

In my sister's case, neuro has some question about whether she is experiencing actual seizure activity. A successful EEG has been elusive for us due to confusion and non compliance. What I can say definitively is that she has myoclonus, which is in her case bilateral, upper body spasm of which she is unaware. Sometimes these spasms are very violent, and whatever she may be carrying goes flying (drinks, remote control, her glasses.) She has no idea and will carry on with confusion. "Where is it?" she will say, not even seeing me frantically cleaning up whatever spilled. I suspect these myoclonus have caused her to fall in her bedroom when alone. 

Wishing you the very best, of strength and patience and love.


dayn2nite2
Posted: Saturday, September 2, 2017 11:03 PM
Joined: 6/20/2016
Posts: 1008


You are a wonderful writer, I can tell just by this post.

Yes, when you realize they're talking to the person in the mirror -- it's like a bolt of lightning hits you and you can hardly believe it's true.  I'm sorry.


Birdybuddy
Posted: Saturday, September 2, 2017 11:31 PM
Joined: 9/2/2017
Posts: 1


Hi. I just joined. I think my husband has ad. He hates showering. Has trouble sleeping. Loses and misplaces things. He has crazy mood swings, he can be really mean. He refuses to go to a doctor. I live alone with him in a rural area. I am scared. I do not know what to do to help him. He will not acknowledge he has a problem. Imguess I am here to get support and find out what I can do. What I should not do, etc. TIA
TessC
Posted: Saturday, September 2, 2017 11:32 PM
Joined: 4/1/2014
Posts: 3688


I had to cover the bathroom mirror with self sticking shelf liner paper and take the mirror off the door that we had in her bedroom. In my case, mother would not enter the bathroom because someone was already in there. I also had to take down the large photos of her children and grandchildren because she thought they were people looking in from windows. It is amazing what the confused mind can come up with to explain what the eyes sees.

Ella1800
Posted: Sunday, September 3, 2017 9:22 AM
Joined: 9/19/2013
Posts: 68


Birdybuddy,

Your post will be lost in the middle of this longer thread.  Please start a new thread of your own so people will see it and respond to your problems.

Just copy what you have, go to the main menu for this forum, and click on the "add a topic" green box near the top of the page.

Ella


omigosch
Posted: Sunday, September 3, 2017 11:08 PM
Joined: 4/29/2016
Posts: 10


WWow...I have not had that mirror experience...but yes there are other moments when the pain of this disease has struck me hard.  I understand and can relate.
Manirjannie
Posted: Wednesday, September 6, 2017 1:40 PM
Joined: 9/6/2017
Posts: 1


My mum was taken to hospital several weeks ago following a fall. This seems to have accelerated her dementia. She won't eat or walk. They are currently feeding her through a tube but they need her to start eating. She refuses everything offered.

It is heart breaking to see.

Does anyone have  a suggestion to encourage her to eat?


KLF
Posted: Thursday, September 7, 2017 10:05 PM
Joined: 9/1/2017
Posts: 10


My sister had stopped eating too, and will now still only eat about four foods, a tiny bit one at a time.

I bought a Ninja blender; I use juice, frozen fruit, spinach, really anything, and add powdered ensure. I call it a coolatta, and sister will drink it more often than not. It has helped me to stop worrying about nutrition so much. We had a nutrition consult here at home, but it wasn't successful, as my sister didn't want to interact or tolerate my interaction. At one point, I said, "Hey, I'm just talking about it to help you." And she answered a few minutes later, "Well, stop, ok? It's bothering me."

What I know about eating and Alz is that the taste buds are lost fairly quickly. The last to go is the taste of sweet. 

Swallowing muscles can be compromised too, you will want to request an MBS (modified barium swallow,) to make sure she is able to eat safely. She could be protecting herself.

Don't settle for a bedside swallow eval, it won't help. Insist on the MBS. 


KLF
Posted: Wednesday, September 13, 2017 10:46 PM
Joined: 9/1/2017
Posts: 10


So today was a success!

I took my sister OUT of the house! That's a big deal, she rarely goes out anymore, tells me, "Maybe later, ok?" It's been weeks. I took her to pick up her new glasses, yay, she even came inside and tried them on. Then of course she wouldn't take them off again to be adjusted, but who cares. The optometrist has known her for years and came out to see her, which was great because my sister has a swollen eye (it's always something,) and we got a prescription for it. 

On the way home, I pulled into a shopping plaza with a small nail salon. Sister said, Who's here? And I said, They're going to give you a manicure! Congratulations! 

And it worked! She got out of the car and managed to tolerate the manicure. It was dicey, she was frustrated at times and a little rude ( to the manicurist, she said, Cmon!! This is taking forever!!!) 

Then, two doors down was a hair salon. Now, I know it seems like no big deal, but please know this about my 45 year old sister-----her hair used to be a Big Deal to her. When she was well, she went to a salon every two weeks for a trim. Faithfully. Never missed. And even though it wasn't her usual place, when I walked her into this salon and she was immediately whisked into a chair with a stylist (thank you thank you) I could sense a change. When the black cape was fastened around her, a big smile broke out and her glasses came off. "Um, short please," she was able to say, which made me cry a little but who cares.

She tolerated the crap out of that haircut. 

You know, I do a lot of talking with my eyes when I'm out with my sister. My eyes plead for patience, for respect and understanding. Today, the stars aligned and a kind manicurist painted the fastest manicure of his life, and a kind hairdresser clipped the fastest haircut of her life, and it was beautiful. Thank you, universe. Thank you.

Now, the sharp-toothed bite of reality that's creeping into my head and robbing my sleep is here, and I'm writing down the day to toss it to the wind. No, she couldn't chose a nail polish color and seemed not to know what that was. No, she didn't get the haircut that she used to rock. And when we got home and I asked her to show off her new painted nails, she didn't remember that they were done, and said, "No one will take me," then showed me her nails as though they were not done. (Lol, no one will take me.)

Go away, thieving grief, she may not know it but she made it. She made it!!!! She made it!!!!!!!


karen6192
Posted: Thursday, September 14, 2017 8:29 PM
Joined: 5/19/2017
Posts: 7


What a beautiful story and what a blessing~~~  Thank you brightening my day with your story.
God's blessings!

Karen


LKAC
Posted: Thursday, September 14, 2017 8:50 PM
Joined: 3/22/2017
Posts: 144


Thank you for sharing your uplifting story. It made me recall instances in which the universe has sent such kindness to me and my dh. And made our journey through this hell a little easier.  In my case it's the cashier at kroger that kindly takes  whatever my dh hands her to pay, which may be his cell phone or my business card, looks at it earnestly and hands it back to him, the cheerful employee at the wendys that always makes a point of saying " hi pops" to my dh like he's  a long lost friend, and my neighbors who stop and chat with dh as we walk around the block and engage in what is pretty much a non sensible conversation.  Bless them.
flowersd
Posted: Thursday, September 14, 2017 9:05 PM
Joined: 4/24/2017
Posts: 10


I am experiencing a similiar sitiuation with my mom except the person she sees is me rather than herself!  She said when she sits on the toilet I sit on the toilet and when she washes her hands, I wash my hands.  I feel your pain.
KLF
Posted: Thursday, September 14, 2017 9:14 PM
Joined: 9/1/2017
Posts: 10


Flowersd:  Painful, painful, painful. This is such a raw disease, I don't think there's anything that compares to those breath taking moments when your beloved is revealed in that vulnerability. I'm so sorry to hear about your mom, I can feel that experience viscerally and my heart goes out to you.

 


KLF
Posted: Thursday, September 14, 2017 9:15 PM
Joined: 9/1/2017
Posts: 10


Let's take those bright moments whenever we can!!
KLF
Posted: Thursday, September 14, 2017 9:17 PM
Joined: 9/1/2017
Posts: 10


LKAC, as beautiful Mr Rogers once said, quoting his mom, look for the helpers! They're always there!
*brightside*
Posted: Saturday, September 16, 2017 5:08 PM
Joined: 12/26/2015
Posts: 17


KLF, you write beautifully.  Your posts made me cry.  Every day is a new heartbreak.  I am so sorry...
 
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