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Dementia(1)
BlueSkies
Posted: Wednesday, August 9, 2017 10:13 PM
Joined: 2/24/2016
Posts: 1096


 
              DEMENTIA

My world is shrinking,

Ever so small

 

Down the rabbit hole,

I fall

 

Should I gently go

Or should I fight to stay

I know I will have to go

Either way

Fatigue says, gently go

Anxiety says, fight to stay

 

I can not think what I should do

Judgement has left me too

 

Tell me..........what would you do?


ladyzetta
Posted: Wednesday, August 9, 2017 11:12 PM
Joined: 2/16/2017
Posts: 846


Dear Blue,

You need to be strong and keep on fighting. Don't let go hang on to Love and Life. Hugs Zetta 


chrisp1653
Posted: Thursday, August 10, 2017 12:29 AM
Joined: 1/23/2017
Posts: 1219


Oh Julie, that is one tough question. I would like to think that what I say here to you is what I will say to myself if ever I am in a similar situation. My belief is that God takes us when He is ready for us, and not sooner. Until that day comes, I think He still has things He wants me to do. Consider how loud it has gotten in here, ( figuratively, ) when it looked like you were going away. You have a way with words, ( your touching poem above is just one tiny example ,) and a clearness of thought that often makes me feel like a dunderhead. Still, I may be speaking from a selfish standpoint, and that would be wrong, for sure. I think I'm not, but then, I am not in your shoes. Not yet, at any rate.

I guess I just want you to know that a whole lot of people here really love you, and we all know that when the day comes that sees you freed from these dirty, rusty, ugly chains that bind you to this life, there will be a huge Julie shaped hole in a lot of hearts, and the skies will not seem so blue for a long time.

With my voice, I say " fight !"

But only you can say what's right.

 

I wish for you  a garden of peace, my beautiful friend.

And blessings always,

 

Chris


MPSunshine
Posted: Thursday, August 10, 2017 5:42 AM
Joined: 5/21/2016
Posts: 1992


Hi, BlueSkies --- There is a time to fight, there is a time to let go; both are a part of living. A person needs to rest to recoup strength. A person needs to fight to keep going. All that is within is part of a larger whole. Your small world when it is the smallest still contains all of us and all that is without as well. My dad said near the end of his life that "all is love." That, coming from someone proud of his logic, an engineering and math mind, was profound. But I could see it. When I was working or moving some material around or cooking or walking I could see it. The boundaries dissolve and what was solid fell away. What used to be outrageously unacceptable suddenly became adequate. The light flickering through the tree branches, the furthest ones, even on a very still morning, becomes in its strange and natural way, sustaining.
Jim Broede
Posted: Thursday, August 10, 2017 9:00 AM
Joined: 12/22/2011
Posts: 5462


I wish for you, Julie, to have tender loving care and unconditional love. For the rest of your life, and beyond. --Jim
julielarson
Posted: Thursday, August 10, 2017 4:45 PM
Joined: 9/30/2015
Posts: 1155


Julie what a wonder you are with words.. You seem to cut straight to the point without hitting people in the head with what you are trying to say.. So eloquent in the way you put the words together to show us what it is you are getting at and what a special treat you give us every time you post something like this.. From another Julie.. Much love honey. Please fight when you can and rest when you can't.
BlueSkies
Posted: Friday, August 11, 2017 12:24 AM
Joined: 2/24/2016
Posts: 1096


Zetta, love and life...Yes, good reasons to fight to stay connected.

When I am fatigued, it seems so easy to just give in.  To crawl in bed and let myself drift.  My anxiety keeps me fighting to stay connected though.  It seems a vicious cycle and I am no longer sure which is best.  I think you Nadine and Julie are right.  I must do both, one for rest and one to stay connected.  I guess it's called going with the flow.  I know this.  I've done it before, but as I progress this knowing what to do and how to react is getting harder.  I hope I don't become a babbling mess here in musings.  If so, I hope someone will gently nudge me into the right direction when I need it.  Or at least not take my ramblings to heart, but know they are coming from a broken mind.

Chris, you always make me feel good when I read your posts.  Your like a big brother to me.  I feel safe with you   

Was so surprising to see that you think I have a "clarity of thought".  But, I thought about it and I think maybe I might.  It's a different kind of clarity.  Once the BS of this world is striped away by dementia, you see what's important in life.  I don't want to waste time on the BS anymore.  Besides, it's just too draining.

Yes, I know I'm rambling.  I knew I might start, but here I am... the way I am...

I feel like I'm on a sinking ship and everyone wants to pretend it's not sinking.  I can't pretend anymore.  I want to talk about it.  I want to share my fears, my struggles, my thoughts and my ramblings.  I think it's safe to do so here, among my friends.

By the way Chris, I have that peaceful garden, thank you.  It's right here in my own backyard.  How blessed I am...

Oh yeah, I want to thank you Jim, for making me feel welcomed and at home here.  It means a lot to me.

Love to you all...BlueSkies

 

 


chrisp1653
Posted: Friday, August 11, 2017 1:50 AM
Joined: 1/23/2017
Posts: 1219


Julie, just look around and you'll see we are all in a sinking ship of some kind. We charge off into the unknown with no thoughts of being prepared, no radar,  and no captain on the bridge. Just a screwy bunch of ideas and a broken stick for a rudder. You know who provides your rudder, and the compass, so consider that  your knowledge is on a higher plain already. And, little sister, I always take to heart what you say. The time to worry is if I don't. Sure, you are plain spoken, but there's nothing you have to prove here to anyone. I think most all of us here accept you at face value, and that value, by the way, is quite high. Anytime you think it's not, just ask Mr. R.

You know, I feel rather flattered at the thought of being your big brother.

Enjoy the garden tomorrow,

 

Chris


Eileen72
Posted: Friday, August 11, 2017 8:36 AM
Joined: 6/10/2017
Posts: 312


Dear, dear Julie,

What would I do?  Right now I would hold you until you are rested and then let you choose your path.  You say you are plain spoken but your words speak to me.  I am grateful for those words.  They help me and I thank you.  

My heart is so heavy...but I can't find the words to tell anyone.  But your words reach me.

Eileen


Sayra
Posted: Friday, August 11, 2017 9:46 AM
Joined: 8/10/2016
Posts: 2317


Dear Blue Skies 

Please ramble and babble when you need too..  It's my pleasure to listen.  Hope you are blessed to find a little peace today.

Sara


BlueSkies
Posted: Friday, August 11, 2017 1:44 PM
Joined: 2/24/2016
Posts: 1096


Eileen,

you and many of us here have heavy hearts and heavy loads to carry.  I posted an experience I had on EO not to long ago.  I don't know if you got to read it, if not I think it could help to lift your heart some.  I have a strong Faith, but we are human and no matter how strong your Faith is, it is to be expected to still struggle and have fears and doubts along the way.  Even Jesus had his doubts on the cross, thinking God had forsaken him.  I believe if we earnestly pray for help with these emotions God will send relief in many different ways.  Sometimes it's just a feeling of comfort, a beautiful sight, sometimes a word from a friend (or even a stranger) and sometimes in a dream.  The comfort he sent me that I am sharing with you now was in a dream, but I have no doubt it was much more than a dream, but I will let you be the judge for yourself.  In any case, I hope it speaks to your heart and gives you some peace as it did me.  I feel so blessed and so grateful that I can be of comfort to you and anyone else that I can reach.  Love to you always...

A Message of comfort:

 I would like to share an experience I had once because I think it might help others here.  When my first husband left me and my kids without warning, I became very ill because I loved him so much and I felt he was my whole world.  I went into a deep spiral of depression after he left and had to be hospitalized.  My ex took advantage of this and got a lawyer and gained custody of my children while I was hospitalized.  It took me years to get over my depression due to having my kids taken from me.  I cried myself to sleep at night thinking of them and remembering how they felt in my arms and their sweet smell as we cuddled.  It was devastating to me to be alone after having a wonderful family and being so happy before.  I thought I would never be able to cope alone.  I cried myself to sleep one night and as I drifted off to sleep I begged God to please help me cope with this longing for my kids that was destroying my life.  I had a dream that night that my two children and I were standing in line to get on a ride at the fair.  The ride was a glass like elevator that would go way up in the sky and had a platform at top where you could see everything.  On the way up the sights were amazing.  Anyway, as we approached the front of the line, my two kids got on the glass elevator and as I went to step in the elevator, the man running the ride told me there was not enough room and I would have to wait for it to come back down.  I was horrified and kept telling the man that my kids were on there and I had to go with them.  He would not listen and the elevator went up without me.  As I stood there sobbing without my kids, an old man came up to me and started patting my back comforting me and telling me all was well and not to worry.  He said "your kids are going to have a beautiful ride and so will you".  He said it was not important that we ride together in the elevator, that we would reunite at the top and share all that we saw on the way up.  He assured me the reunion would be wonderful and the short separation would not mean much in the end.  I immediately woke up after this and I knew this was a message sent to me by God, not just a dream.  And what a wonderful message it was!  I knew that no matter what separates us from our loved ones in life that it is only a short separation and that we will have eternity to share when it is all over and that all that we experience will be shared and enjoyed together in the end. 


BlueSkies
Posted: Friday, August 11, 2017 1:48 PM
Joined: 2/24/2016
Posts: 1096


Sayra, 

Thank you for your support and comfort.  I hope that I can be a support and comfort to you as well.

Lots of love to you...


chrisp1653
Posted: Friday, August 11, 2017 2:46 PM
Joined: 1/23/2017
Posts: 1219


Julie, after posting your " dream, " how can you question my saying you have great clarity of thought ? Thank you, little sister, for sharing. I concur that you had more of a vision than a mere dream.
Eileen72
Posted: Friday, August 11, 2017 3:49 PM
Joined: 6/10/2017
Posts: 312


Thank you Julie.  Reading between the tears gave me a sense of hope when I have been feeling so hopeless.  I see DH everyday. He is in a SNF since the end of June. I miss him so much. I wanted to keep him home until this disease prevented me from doing it!  I was always the worker bee, the fixer of that what was broken and I can't fix his disease. I want to be in his world, to share what he is experiencing, to comfort him when he is scared, to tell him he is wonderful just the way he is. 

To know he can share with me his experiences when we both are joined again does give me comfort.  And I ,too , believe it was not a dream but a message given to you and a message you so generously share with us.  I shall reread your gift often. Thank you and you are in my prayers.  

Eileen


ladyzetta
Posted: Saturday, August 12, 2017 12:24 AM
Joined: 2/16/2017
Posts: 846


Julie.

I totally agree with what everyone else is saying here. you have been a big help for me having to deal with the emotions I had when I had to place my DH is MC, I think I feel more comfortable on this board I feel people here are wanting to help and not judge. I have read all rhe boards and I feel this is where I can share and get the help I need., everyone here seems to be here for each other, my DH has been in MC for 7 months and he is finally fitting in, me I am still a basket case out I am thankful to say I am finally accepting things. I am thankful to all of you for that. .Hugs to all Zetta 


Eileen72
Posted: Saturday, August 12, 2017 7:06 AM
Joined: 6/10/2017
Posts: 312


To all, dear Julie and Zetta,

I will first apologize because this is more a rant than a musing.

My DH and I are just average middle class people, who worked hard, paid are bills and tried to save a bit for retirement.  And then this horrific disease!  We are a bit too wealthy for Medicaid and have to spend down  some of our savings to qualify.  I can't afford to revamp our home to have it be a safe haven for the man I love with every fiber of my being, I can't afford 24/7 home health aides, I can't physically care for the man I want to keep home because he falls and takes me with him.  I used to tell the rescue that came to our house often to help me get him up, it was a buy one, get one free deal, when they would ask if I needed to be transported as well.

We are not highly schooled or have generous pensions or unlimited funds...we are just two old dudes trying to do our best...one with brain failure the other emotionally disabled from trying her best to help her DH.

We are honest folks and wouldn't knowingly hurt anyone.  I,too, Zetta don't fit on the other boards.  I have had to make horrid choices...I feel like I have been torn in half.  Half of me living in a skilled nursing home (physically unqualified for memory care) the other half of me living in the cute little home we worked so hard to own.  I see his handiwork in every room I go into to....but he is not here....it is awful. 

When I thought this disease couldn't get any worse ...it did...it separated us...and I am the one not adjusting.  

I apologize if I have offended anyone ....and thank you for "listening"

Eileen


Jim Broede
Posted: Saturday, August 12, 2017 9:56 AM
Joined: 12/22/2011
Posts: 5462


We are all here. Because we are learning. To believe what we dearly want to believe. In our own unique ways. We even dare dream in the impossible. Yes, dreams that keep us going. Keep us alive. And vibrant. And in love. With the durability of life. We are true believers. In the impossible. And that makes everything possible.  Yes, we are free to dream.  Without limits. That is our saving grace. --Jim
Jim Broede
Posted: Saturday, August 12, 2017 10:07 AM
Joined: 12/22/2011
Posts: 5462


When we lose ourselves. In dreams. We find ourselves.  --Jim
Jim Broede
Posted: Saturday, August 12, 2017 10:16 AM
Joined: 12/22/2011
Posts: 5462


Nothing any of you can say can offend me. Take that as a compliment. To one and all. --Jim
llee08032
Posted: Saturday, August 12, 2017 10:30 AM
Joined: 5/20/2014
Posts: 4405


Blue,

Lovely writing!!!!! This is a good board for keeping it real. I'm thinking up a poem about the mask that I wear to work and in front of my family; but more so how I need to take off my mask and be me as I am now, exhausted, depressed ,impaired and alone. Although I always seem to manage to push myself through a round hole I am a square peg at heart.

I can't take the med's and suck at Best Practices. My idea of Best Practice is buying a lemon meriagne pie because the egg whites contain less fat and eating salmon 2 weeks ago. I sleep a lot when I am not working and rarely go to the Dr. Exercise is cleaning the house. Years back I ran over 25-30 miles a week and was very regimented. I can't seem to stick to a regimen and I am not going to try to force myself. Working while cognitively impaired and my spirituality is enough for now and is my current best practice. 

Love to all,


Sayra
Posted: Saturday, August 12, 2017 8:06 PM
Joined: 8/10/2016
Posts: 2317


Eileen

Always enjoy your posts.  It's obvious you love your guy and that your heart is broken.  So sorry for all you are having to deal with.  It is my pleasure to listen.  That is why we are here, we all need each other.  I feel you show so much compassion.  Hope I can learn to do that too. I tend to feel more aggravation.  This discourages me with myself.. 

Take Care


BlueSkies
Posted: Sunday, August 13, 2017 12:20 PM
Joined: 2/24/2016
Posts: 1096


Eileen,

Please don't worry about offending anyone.  You are just stating your feelings.  You are in a safe place here.  Post away...no worries.

I think your amazing Eileen, what you have done and are doing for your DH.  He is so lucky to have you in his life.  I believe he knows that you are doing your best and that you love him dearly.  I know that PWD may at a certain time not have "actual" memories, but I know they still have emotional memories which are the most important anyway.  If a PWD can't remember who you are, but still acts happy to see you or responds to your touch, then they have an emotional memory of who you are.  They remember their love for you and how you make them feel.  Even if one is so far gone that they can not respond, I think they know inside, but can't express it on the outside.  I only say these things as I have moments like these myself on very bad days.  Which I seem to have more of lately. 

I just want you Eileen to remember, that your DH knows how much you love him and he loves and appreciates you even though he is unable to express it.  Keep that in your heart and remember, you will reminisce over these times one day and laugh together at all the silly thoughts you had and believed.  Put your head on God's shoulder tonight.  Take a load off and let him wrap his arms around you and comfort you.  I do it all the time. 


BlueSkies
Posted: Sunday, August 13, 2017 12:24 PM
Joined: 2/24/2016
Posts: 1096


llee,  I know the square peg in the round hole feeling.  What a perfect description, lol. 

You made me laugh with you idea of best practices.  I think being able to laugh is even more important than what you eat.  I am so glad you are still able to laugh.


MPSunshine
Posted: Sunday, August 13, 2017 2:34 PM
Joined: 5/21/2016
Posts: 1992


Hi, Eileen, I'm enjoying meeting you and getting to know you through your words. I'm enjoying all the conversations here and the input from ladyzetta, ilee, Sayra, BlueSkies, Chris, Jim and anyone else who cares to post their thoughts large and small. 

I used to exercise more too, you know, the intentional kind of exercise for actual fun when I would run six miles in the morning before daybreak.

Now for me pushing my mom's wheelchair is developing my upper arms and my thighs, they are massive from the exertion --- huuuuge muscles -----, and I can break down that wheelchair real fast and throw it into the back of the car like second nature now. It's kind of impressive. Me and my mom can go everywhere together now and are good mates.

I'm fit in a different way now, and that's okay.


Eileen72
Posted: Sunday, August 13, 2017 4:14 PM
Joined: 6/10/2017
Posts: 312


To all, thank you for such a warm welcome.  Jim, I do take it as a compliment and I thank you.

Ilee, you made me laugh as well.  One of the things I was noted for was my cooking and I make the most awesome lemon meringue pie.  If you were close I would make you one to encourage your best practices. I always got that mixed up, square peg or round peg ...ugh.The best practice, spiritual , is a fine one to have at the top of your list.

Sara, you showed me compassion so I don't think you are lacking.  Probably one of the easiest things I have done was to be able to enter my Gerrys world.  It sounds funny, but it seemed to come naturally.  Almost like waves on the ocean to let his conversation and thoughts take me where they had to go.  Of course reading Ilene's, Iris' and Julie 's posts gave me insight that helped me so much to learn what is like for him.

Dear Julie, your words help me cry...I always found it hard to cry, like Angelwolf and mostly for the same reasons. You speak of Gerry as if you know him.  He is the kindest and gentlest of men.  He has always been my protector, my champion, encouraging me to fly high.  And now that the tables are turned I don't want to be lacking.  He always made his embrace a safe place, a loving place, a place where there is  no room for fear. His love for me is unconditional. And I still see that love every day.  Julie...you are so like Gerry it is amazing.

Gerry knows when I am there.  His thing is taking my hand and giving me what we callled butterfly kisses.  I am usually with him about 3 to 4 hours a day.  I so worry that he will be hurting , scared, or afraid and he won't be able to tell me.  I have become quite the guardian.i think that is why I am so emotionally exhausted when I come home.  He was always so good at reading me so when I am with him I only show positive, loving and happy vibrations.  I learned early on in this disease his ability to detect fear, anger, dissatisfaction, frustration from me was uncanny and it would send him into a tailspin.

Mp, it seems to me you are developing muscles in all the right places for all the right reasons.  Your mom is fortunate to have such a happy and joyful mate.

As an aside, I felt lacking on the spouse board because I couldn't keep him home.  God knows I wanted too and maybe it is my guilt or imagination.  

To all of you, your warm and loving welcome means the world to me and I so appreciate it. 

Fondly,

Eileen


ladyzetta
Posted: Sunday, August 13, 2017 9:14 PM
Joined: 2/16/2017
Posts: 846


Hi Eileen,

You sound so much like me, my DH and I are also just old dudes trying to make the best of things. My DH has been in MC for 7 months now, he is 88 and I took care of him at home for 5 years and finally had to call in a caregiver to help me with his care and after 3 months the caregiver and the Doctor felt he needed more care then what he was getting at home. So I placed him in MC. It was a hard thing to do but for his safety as well as mine I placed him.

It is still hard for me to have him there I go visit about 3 times a week, he used to asked me every time he saw me, when will I be taking him home. It made me feel so bad to hear that question, but for the past month he has not asked that question, now I feel bad he is forgetting home. This is hard for all of us I am so glad we are here for each other. Hugs to All of You. Zetta


jfkoc
Posted: Sunday, August 13, 2017 9:53 PM
Joined: 12/4/2011
Posts: 18854


Eileen...I feel sad that you felt "lacking" on spouses board. You are a devoted wife with so much love. A outstanding caregiver and advocate.

I was fortunate to be able to keep my husband at home but still I realized that it might not work out and had Plan B at the ready. It would have been hard for him to leave but it might have become the best choice. I don't know if I could have been as strong as you are.

Please do not harbor guilt. How can we feel guilty when we are doing our best. 


chrisp1653
Posted: Sunday, August 13, 2017 10:26 PM
Joined: 1/23/2017
Posts: 1219


Jfkoc, I am with you 100%. I have always felt that if a person can say they did the best they could, with what they had to work with, at the time, then there's no guilt.  Sure, we all look back at things and wish we had maybe done this or that differently, but as long as did our best, then we put smiles on our faces and move on to whatever is next.
llee08032
Posted: Monday, August 14, 2017 9:52 AM
Joined: 5/20/2014
Posts: 4405


Eileen,

You made the best choice. You would be no good to DH had you fallen and injured yourself trying to help him! You are safe and he is safe.  He knows and feels you there loving him and also he knows at some level that are giving your all in caring for him.  

We cannot save anyone on the plane if do not put the oxygen mask on ourselves first.

Realizing our humanness and our limitations and retiring our fire rescue hats when we cannot save the world and fix everybody is a good thing!


llee08032
Posted: Tuesday, August 15, 2017 8:27 AM
Joined: 5/20/2014
Posts: 4405


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llee08032
Posted: Tuesday, August 15, 2017 8:39 AM
Joined: 5/20/2014
Posts: 4405


I lost my post! I'll try again.

Dear Zetta,

The concept of going home as you can imagine holds many different and deep meanings for a PWD. Home is our sanctuary. Our safe place. Your husband not asking to go home may mean that he has adapted to his new surroundings and that he feels safe. Also when he is with you he is home because your presence brings warmth and those many associations connected to the feeling of being home. 


Eileen72
Posted: Tuesday, August 15, 2017 9:06 AM
Joined: 6/10/2017
Posts: 312


Dear Llee...there you go again...thank goodness.  Giving a perspective that had not occurred to me.  As a see DH daily...what insight. The SNF is his home...your words help me in acceptance.  A hard task for me. Fondly, Eileen
ladyzetta
Posted: Tuesday, August 15, 2017 8:45 PM
Joined: 2/16/2017
Posts: 846


Dear Llee

Thank You for saying that, that means a lot to me, I totally understand what you are saying, I was hopeing this day and his acceptance would come, it has now I guess I still need to accept the fact that he is there. Thank You, Hugs Zetta 


llee08032
Posted: Wednesday, August 16, 2017 7:28 AM
Joined: 5/20/2014
Posts: 4405


(((((((((((((Dear Eileen & Zetta))))))))))),

Separating our feelings, wishes, desires and emotions and making the most safest, sound and practical descsion in the true best interest of our loved ones is not as easy at it sounds. 

I wish you both peace with your choices and I pray that my family is able to choose so wisely when the time comes. If your loved one is peaceful, calm, safe and well cared for that is the fruit born from your having made the best choice.  


Eileen72
Posted: Friday, August 18, 2017 7:40 AM
Joined: 6/10/2017
Posts: 312


Thank you dear Julie and Llee,

An eureka moment: 
I can only speak for myself , but maybe the reason Zetta and I are struggling is because the placement of our LO was not our decision but because of circumstances beyond our control. 
We were handling the situation and then the situation changed and we could no longer rise to the task at hand.  It was bigger than we ever thought it could be. A wise man recently told me " it can change like the thwish of a horses tail" .  For me that is what occurred and I had to chart a new course.  A course that was best for my LO. Not what I had planned.

I no longer feel the heavy burden of guilt...thanks to help I found here and with my e-friend....but am now feeling deep disappointment...that it couldn't play out the way I was hoping.

But it is a new day...a new way of life...and with the adage ...one day at a time....
I will "find joy in the journey"

I find solace here. Thank you!
Fondly, Eileen