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Sundowning
BlueSkies
Posted: Wednesday, June 7, 2017 10:47 AM
Joined: 2/24/2016
Posts: 1096


She gets ready for bed as the sun fades away and the night surrounds her.  She knows she is alone, but suddenly she sees movement in the shadows.  Who is there?  Is that her husband?  Where did he go?  Did he leave? Is she alone.  She becomes frightened.  Then she wonders why she is scared.  Did she see something, she is not sure.  Tears fall from her eyes and she wonders why.  She wonders why she does not know.  She thinks she might be hungry so she goes to the kitchen for a bite to eat.  Where is her food?  Did someone move things around?  Where is her food???  Why can't she find anything?  She thinks she should go shopping for food and goes to the garage.  Where is her car?  Was it stolen?  Should she call the police?  Where is her husband?  Did he take the car?  Where is he???  She sees movement again at the corner of her eye.  Who is there??  Is that him?  She calls out, no one answers, she is alone.  Where is he???  The panic begins to build.  Hello?  Hello? She calls.  Her stomach is tightening, her head starts to pound, her heart is racing, her legs tell her to run.  She can not breathe and wonders if she is going to die.  Thoughts quickly race through her mind.  Why is she in the kitchen?  She hears a noise, is someone at the door?  She peeks out her little window by the door.  No one is there.  She stands by the door, lost in her thoughts.  Her hand hesitantly reaches for the door knob.  Was she going out or just coming in?  She wonders why she doesn't know.  She is so confused.  It doesn't matter she tells herself as she chews on her hand and tears fall from her eyes.  Where is her husband?  She searches the house.  There he is, in the bed asleep.  Oh yes, I was going to bed, she thinks.  But as she crawls into the sheets, she wonders, is she getting up or going to sleep.
julielarson
Posted: Wednesday, June 7, 2017 11:19 AM
Joined: 9/30/2015
Posts: 1155


Wow Blueskies, that is riveting! Do you go through this? It seems so personal. Thank you for writing this..
BlueSkies
Posted: Wednesday, June 7, 2017 11:28 AM
Joined: 2/24/2016
Posts: 1096


Yes Julie, this is from my experiences.  Was not sure if I should share it, but glad I did now.  Thanks for the comment.
jfkoc
Posted: Wednesday, June 7, 2017 12:24 PM
Joined: 12/4/2011
Posts: 19631


How frightening for you. I hope you will share this with your husband. I think I could have been better support for my husband if he had been more open but that was never his way.
Sayra
Posted: Wednesday, June 7, 2017 12:34 PM
Joined: 8/10/2016
Posts: 2897


Thanks for sharing BlueSkies,  I am saving this as a reference. Thank you for the insight. This is why we all need each other.  As Judith said this has to be very frightening.
sharon11daugherty
Posted: Wednesday, June 7, 2017 12:55 PM
Joined: 8/6/2015
Posts: 1736


This is going to help me in being patient with hubby. I think it is hard on me,, I cannot imagine, now how he feels. No verbal questions  but constant grabbing my hand, telling me to come back to our room.

I have always been ADD. But this is that in fast forward.

Blue Skies may I share this in another thread?  It would be so helpful to many.

Blessings, sharon


Jim Broede
Posted: Wednesday, June 7, 2017 12:58 PM
Joined: 12/22/2011
Posts: 5462


You have an uncanny grasp of your dilemma. I'm amazed. At your ability to express what you are feeling. Don't know if that's a blessing. Or a curse. For now, I will go with blessing. Please, don't be scared. It's all right to be confused. But your form of expression is not confusing. Your poetry, too, is magnificent. Meanwhile, you need people in your life. Who constantly emit good vibes. Who encourage you. Who love you. I wish for you. Only good vibes. And reassurance. For the rest of your life. --Jim
BlueSkies
Posted: Wednesday, June 7, 2017 2:31 PM
Joined: 2/24/2016
Posts: 1096


Jfkoc,  My DH is aware of what I go through.  I share everything with him.  He knows how hard it is for me and he is so supportive of me.  He told me once I reminded him of a beached dolphin flailing on the beach trying to get in the water, but not knowing how.  I cried when he told me this because I knew he saw my struggles and I did not feel so alone then. 

Sayra, it is frightening at times.  I have had few days that bad and all that I wrote did not happen all in one day.  I tried to combine my experiences to give a picture of how it can look from the view of the PWD.  I'm glad you could appreciate the perspective.  That was my goal.

Sharon, yes you may post this elsewhere.  You have my permission.  I hope it can help others, PWD and CG's alike.

Jim, it is a blessing and a curse.  Depending on my day.  I have cried many times, saying I wish I had no clue, but then I realize how selfish that would be of me to wish such a thing.  My DH and I are close and have grown even closer as this journey continues.  I am glad I can still give love to him as he gives to me.


jfkoc
Posted: Wednesday, June 7, 2017 4:30 PM
Joined: 12/4/2011
Posts: 19631


So glad you are sharing. I fear not all "partners" do this.
mike9569
Posted: Wednesday, June 7, 2017 7:24 PM
Joined: 2/4/2014
Posts: 602


The tragic part is that so many PWD have anosognosia so don't know they have this memory loss and can't communicate their confusion and fears to their partners.  They just live in a personal hell and lash out at the very people who love them most.
Mac50
Posted: Wednesday, June 7, 2017 9:29 PM
Joined: 10/1/2015
Posts: 616


thanks Blueskies.   Beautiful
BlueSkies
Posted: Wednesday, June 7, 2017 9:34 PM
Joined: 2/24/2016
Posts: 1096


Mike, 

I never thought of that when I would wish to have no clue.  I just thought I would not know I am suffering, but your right, it would make sense that it would make it worse.  Why then do so many CG's say that it's the CG's that suffer the most because the PWD has no idea what's even going on?  It's a bit confusing, isn't it.


jfkoc
Posted: Wednesday, June 7, 2017 9:39 PM
Joined: 12/4/2011
Posts: 19631


I do not think my husband had a difficult time until near the end and I certainly never felt that my lot was hell at all. Sad. Hard,  but not hell. We traveled the road together.
BlueSkies
Posted: Wednesday, June 7, 2017 9:46 PM
Joined: 2/24/2016
Posts: 1096


Jfkoc, can't remember if you said or not, but did your DH have anosgonsia?
ladyzetta
Posted: Wednesday, June 7, 2017 10:13 PM
Joined: 2/16/2017
Posts: 1314


Dear Blue Skies,

Thank You for writing this, this is very heart warming, it helped me understand what my DH must be going through. I felt a closeness to this lady as I was reading your story, I was so afraid she would walk out the door to go fine her husband. I was so relieved she did not do that. Hugs & Love to You,  Zetta

 


chrisp1653
Posted: Thursday, June 8, 2017 2:31 AM
Joined: 1/23/2017
Posts: 1285


How I wish I could just plug in to your thoughts. When I read this, I feel like I am in darkness with only a hint of light far off. There is so much to know. I am a cranky, grumpy husband, with a beautiful star for my wife. Her light is dimming, and she deserves so much more than me. Are there so many questions in her that seek answers ? I wish I knew.

I am always amazed with your clarity and well formed thoughts.Please keep it up, my dear friend. You have so much knowledge. And heart.

 

Chris


Jim Broede
Posted: Thursday, June 8, 2017 12:25 PM
Joined: 12/22/2011
Posts: 5462


Seems to me, Blue Skies, that at the moment, your husband is the most important person in your life. Sounds like he’s a decent and understanding and loving guy. Who will stick with you all the way. Exactly what you need.  Loving support. Good vibes. Morning. Noon. And night Someone who truly loves you. And does little things. That put you at ease.  Such as taking you out. For a hamburger and French fries. For little pleasures. At just the right time. You are fortunate. To have found a true love.  The sad truth. Is that there are many husbands. That would not stick with their wives. At the time of need.. I like your love story. Savor it.  --Jim

 


sharon11daugherty
Posted: Thursday, June 8, 2017 1:43 PM
Joined: 8/6/2015
Posts: 1736


 Blue Skies , your post has enlightened me so much. I think your thoughts are much like my hubby, who cannot speak. I began telling him my whereabouts every time I leave the room.  Every day  since I have reasured him that I have no plan but to be here. He is peaceful.     No anxiety x24 hours.

Thank you sweet friend.

 


jfkoc
Posted: Thursday, June 8, 2017 4:08 PM
Joined: 12/4/2011
Posts: 19631


Blue Skies...I think so??? Sometimes he would know something was off but it did not seem disturbing to him. We blamed it on his Parkinson's (his second diagnosis after MCI) and some "snapies" not firing at the moment. There never seemed to be a problem but it is always possible that I missed it. 

I must admit that there was very little stress imposed on us and we pretty much were able to do a lot of nothing.

I would like to think that he was not aware.


BlueSkies
Posted: Friday, June 9, 2017 1:59 AM
Joined: 2/24/2016
Posts: 1096


Thank you to all who have been so kind with your comments.  It means so much to me to know this has helped others.  Whether it be a PWD, CG or someone who has lost a LO.  We are all in this together.  My love and prayers to all...
​NorthWoods
Posted: Friday, June 9, 2017 8:38 AM
Joined: 4/6/2016
Posts: 347


Thank you so very much for this.  As a caregiver I can only see from the outside.  You have given me a better understanding of what must be so frustrating and frightening for my husband. Caregiving is hard but it is even harder to imagine life on the other side.
BlueSkies
Posted: Saturday, June 10, 2017 11:04 PM
Joined: 2/24/2016
Posts: 1096


Your very welcome NorthWoods.  It makes me feel good to know it has helped you to understand your husband better.  Your comment is very much appreciated. 

Lots of love to you and your husband.

Love, BlueSkies

 


Jim Broede
Posted: Saturday, June 24, 2017 5:57 AM
Joined: 12/22/2011
Posts: 5462


For all you sundowners,  I recommend sunrising. Give it a try. Rise with the sun. --Jim