I broke one of our rules

Ed1937

My stress level has been through the roof all day today. About 2 hours ago I told my wife I wanted to talk to her. I told her I knew I shouldn't say what I was about to say. I had tears in my eyes, and I told her I loved her. I told her I didn't want her to go to a nursing home, but I couldn't do it any longer. She didn't know what I was talking about, so I told her that she had to cooperate with me when I needed her to do something, or allow me to help her when she didn't want me to. I told her she was killing me. Surprisingly, she has been very cooperative since. She might not be tomorrow, but when we finished talking, I felt like somebody lifted a 100 pound weight off my shoulders. Stress level took a dive. I've said before that in many ways she seems pretty normal. Now if she can just remember what we talked about. There are a lot of things she forgets, but there are also a lot of things she remembers. I know. Trying to reason with someone with dementia doesn't work. We'll see.

M1

I so empathize Ed. I so much want to tell her the truth, not fiblets. The fiblets may seem kind to our LOs, but they take a toll on us caregivers for sure. Fingers crossed for you. I feel like I’m lying my head off right now and it doesn’t feel good. I think the next few days are going to be nothing short of brutal.

A losing hand.

You give of your heart, your love, and your life,

To a grandparent, parent, husband or wife.

You dress and you feed them, you clean up the mess.

For months, maybe years, you give of your best.

At times you can laugh, more often there's tears,

As you watch them decline year after year.

So often you feel like there's nobody there,

No one to talk to, there's no one who cares.

Then late at night, you'll sit and just cry,

"It all seems so hopeless, so why do I try?"

And then comes a voice, so soft and so clear,

You look all around you, but no one is near.

Again comes the voice, as soft as can be,

"You know why you try, just look and you'll see."

"You do it for love, you know that is true."

"This love that you have, will help see you through."

"You're not alone, there's someone who'll share."

"The burden you carry, I'll help you bear."

Then in the darkness, a warmth you can feel,

A soft gentle presence, you know it is real.

As you drop off to sleep, the angels above,

Echo the words...."You do it for love."

Joydean

Loosing hand, thank you so very much! I sure needed it myself today! All I can say is thank you!

Lynne D

Oh Ed, how amazing that it seems you made an impact on her. My fingers are crossed for you!

Mint

Ed I’m so sorry.  Know these past days have been very challenging and heart breaking for you.  Ed it seems it is time for you to take care of yourself and that may mean providing your wife’s care in a different way.  

A losing hand, thank you for sharing.  

JDancer

Anything that relieves stress is a win. I hope it lasts. Maybe those words cue her "to behave." I would repeat them in the future, if needed, and see how she reacts. 

Every situation is different. There's a thin line between right and wrong. As caregivers, we have to adapt. 

Joe C.

Ed, I am sorry you are struggling so much at this point but you have been a fantastic & devoted husband/caregiver. I trust that you will come to the best decision for you, your wife and your family. Take care my friend.

toolbeltexpert

Ed I pray for you each morning, and I know you got this. I am glad you feel the weight has been lift.  

toolbeltexpert

A losing hand. wrote:

You give of your heart, your love, and your life,

To a grandparent, parent, husband or wife.

You dress and you feed them, you clean up the mess.

For months, maybe years, you give of your best.

At times you can laugh, more often there's tears,

As you watch them decline year after year.

So often you feel like there's nobody there,

No one to talk to, there's no one who cares.

Then late at night, you'll sit and just cry,

"It all seems so hopeless, so why do I try?"

And then comes a voice, so soft and so clear,

You look all around you, but no one is near.

Again comes the voice, as soft as can be,

"You know why you try, just look and you'll see."

"You do it for love, you know that is true."

"This love that you have, will help see you through."

"You're not alone, there's someone who'll share."

"The burden you carry, I'll help you bear."

Then in the darkness, a warmth you can feel,

A soft gentle presence, you know it is real.

As you drop off to sleep, the angels above,

Echo the words...."You do it for love."

A losing hand. That is well written from your heart and I feel it is God inspired.

Ed1937

This morning I had a different woman rise out of bed! So far, so good!!

Pam BH

Ed, that's a wonderful beginning to Good Friday! You are an amazing caregiver and an inspiration for how to do this awful but wonderful job we've been given. Losing Hand, thank you for this beautiful writing from the heart.

Jo C.

What a good morning that has greeted you on Good Friday.  She may not recall the specific words of the conversation, Ed; but it appears she connected and "felt" it, and it has stayed with her at least for a bit.

In your prior Post you shared what happened when you "lost" it.  All of us have a point at which the pot boils over so to speak; then we are served a big bowl of regrets.   You have good insight and know your tolerance well, that is a definite positive. 

You have been a deeply caring husband who has faithfully been providing every care need under tremendously difficult never-ending circumstances. Double incontinence, acting out and steep resistance to care ramps everything up. Your seeing the CELA and your doctor is a good and practical plan.  

If it is doable, and if you want/need to conserve assets as much as possible at this point in time, would hiring a care aide for five or six hours during the day help at all?   Just an idea for less costly than a care facility.  However; every day is 24 hours, that still leaves a lot of time hands on.

If the better choice is placement, it is possible that your wife may benefit from increased socialization and activities that are available.   If placement turns out to be best for both of you, that would be golden.   If not, then placement is reversible, you can change your mind at any time you wish.  All options are open.

Sure will be thinking of you as you move forward toward a decision.   Let us know how it is going and how you are doing.

J.

Jo C.

Losing Hand; what a beautiful poem; thank you for Posting it.  It is deeply appreciated. If you are the author of it, we are in the presence of an amazing writer and I ask permission to pass it on to others.

J.

Battlebuddy

   Ed,  Great start to the day! 

  Loosing Hand- the poem really touched me. It’s all there - the crazy story of the journey we are all on. Thanks so much for posting. It was a blessing to read it last night.It helped me have the right perspective after a tough day.  

A losing hand.

Jo C.

  I am not the author of the poem. It's something I came across when I was taking care of my wife. It helped me and I kept it, and I thought it might help ED. Seems like it helped some other people also, and hope it helps a lot more. 

nancyj194

Ed, I am so glad your talk with your wife has helped.  I find that trying something with our loved ones can sometimes actually work.    

I have had terrible insomnia after going off of a benzodiazepine prescribed by a well meaning doctor in the late 1990s. Every afternoon I lie down to rest or nap if I can, and I always tell my husband, just rest in your recliner or work the puzzle. Don't go outside or answer the phone, unless it is one of our two children and tell them I will call them back. 

I repeat this request ever day. If I don't, he will wander around and I cannot sleep or even rest.  If the phone rings, he will answer and come get me to talk.  

I also find that the saying, "everything will be okay" is very helpful in calming me.  

Wishing you the best.

Ed1937

A losing hand. wrote:

I thought it might help ED. 

That was beautiful, and I'm sure I typed a response to it. But it doesn't show up. Likely my fault, but not sure what happened. Whoever wrote that knew what we all feel. They've probably been there. Thank you very much for posting that. Like you, I have it saved.

Marie58

Ed, hope your day is still going well.

A Losing Hand, thank you so much for sharing that!

JoseyWales

Ed, I echo the hope that all is still going well at your house.

Have you considered hiring someone for a little bit of time during the week? I had caregivers, and if nothing else it was nice to have someone who knew DH and really understood much of what I was going through. For me, I had to have someone so I could work. But there were a few times that I paid someone to stay with him while I went shopping or ran errands. And once just to take a walk in the woods. 

nancyj194

A losing hand, thank you for sharing that poem.  Sweet, kind words can help so very much.

N

Ed1937

Thank you, friends. Today was much better than what I've had for the last week or so. Keeping my fingers crossed.

Joydean

Ed, so happy for you that today was a better day. You deserve it, and so does your wife. Hope the better days can continue for a while for both of you.

DJnAZ

Ed...as the politicians say, "I feel your pain". But in our world of dementia, I really do feel the pain we all suffer as caregivers. I hope your talk helps!

Losing Hand...thanks for your words. They helped let me down gently from an absolutely terrible day.