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It Never Ends


ShanN

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Thank you,

I still am just emotionally broken. Leo is in the hospital. And when I'm there, even though he is out of it, doesn't know up from down, doesn't even know me... I still give my all, keeping a positive attitude, calm voice, smiles, and I choke back the tears until I leave and am not with him. Right now, it just breaks my heart that he doesn't know who I am, doesn't remember our years together, and is so sick. They are keeping his blood pressure low to try to prevent anymore strokes.

I just hold his hand. He lets me do that. I'm not much talking about "us" because its clear he gets agitated because he can't remember.

I don't know where my strength is coming from. Seeing my Mom murdered when I was 15, I thought nothing would be worse that that. Caring for my Nana through cancer, I thought nothing would be worse. But losing my soulmate, seeing him decline in every way and knowing I need to find a nursing facility instead of him returning home, is gut wrenching torture. I feel like I'm running on someone else's steam for strength. Because when I get home, I just fall apart.

3 weeks 1 day until the day my Mom was murdered.

I thank God I can come here and be heard. Thank you all for being here.

This week I will be busy, with help, trying to find the very best facility for Leo. Right now he needs to be in the hospital. So I have time to find the very best.

I honestly feel like I'm outside far away, just looking in on my life, on OUR life and seeing it all happen, but acceptance is so hard... Letting go is so hard.

Sorry if I make little sense, that's just because I do feel so overwhelmed, and like I've been hit in the gut.

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Dear Shannon, We are all here for you. I know these days are gut wrenching. I used that same word when Bill was in the hospital preceding his death (which took place at home). A friend told me one day back then...Mary, don't hesitate if it feels right to climb into that hospital bed with Bill and hold him. I remembered her words and did that often when it felt right...i.e. I thought it would calm his agitated body. I pass that on to you in case it is helpful. I think when someone is in a hospital or nursing home, people hesitate to do what they might do in the privacy of their own homes.

You know you have no choice but to take this journey an hour or two at a time. And yes, letting out all that pain when you get home...we have all done that...many many times. I do know the feeling of being on the outside of your life, looking in. I think sometimes our minds protect us with that sensation. It is ok. Just be where you need to be. Stay in close contact with your therapist, please, these days also. None of us expect you to make any sense these days but frankly you make perfect sense.

You are in my prayers and thoughts,

Mary

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Thank you dear Mary

It's ironic, I thought this afternoon about climbing in next to him in bed. But I fear agitating him more.

Right now it really is an hour at a time. And I'm really exhausted. I'm actually in bed already. Have the tv on a d going to have tea and shut my eyes.

G'night. Thank you for being here. XO

Oh, and yes I am talking to my therapist a lot by phone on top of seeing her. Unfortunately, she too cared for her husband in 2009 and lost him. So she is really helping me too, in all the feeling I'm experiencing.

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I understand the fear of agitating him and ONLY you will know. But I tested it and Bill calmed down instantly when I wrapped my body around his both at the hospital and during the last five days of his life at home. He died peacefully there.

Mary

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Thank you Anne and Mary,

I will try to snuggle him tomorrow when I see him.

I napped a couple hours and just woke up drenched in a cold sweat. Lots of anxiety. Took my PRN of klonopin.

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Been awake since 3am. I am seeing my therapist later this morning. I've got to fight to stay ok for Leo.

I just need strength. It's becoming more and more difficult to find strength.

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Dear Shannon,

You have such a wonderful and loving heart, and it shines through your posts.

Please, dear one, take one hour today to feel that love and share it with yourself with great compassion and understanding. Your loving nature is so special, and you can use it to listen to what you need and to respond to your own needs. Even if you can only do this for fifteen minutes, sit quietly and get in touch with your own needs, and hug yourself, be gentle with your breaking heart, and let yourself relax for a little while in the comfort of our love and compassion, even as you are drawing on your own love and compassion for you.

Leo is getting good care now, and you must make sure that you are also getting good care. Besides being Leo's advocate, be your own loving and compassionate advocate. Let love and peace fill your heart this day.

I send love and {{{hugs}}} and prayers for a day of healing and compassion for you and Leo.

*<twinkles>*

fae

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Shannon,

I'm sorry I haven't been here, I've been sick for several days...still am. I think Anne's stmt. that you don't have to be or do, you can just come here and we're here for you, it's so true. I can imagine your heartbreak and, well words can't define what you're going through but I feel it...

Try to just enjoy holding his hand as he allows. Know the beautiful relationship you've had isn't defined by life or death, knowing or not knowing, it just is and will always continue to be. I know it's hard seeing these changes, it seems unfathomable to have to adjust, but we do somehow adjust to what comes our way, it's survival's way. Hang in there and try to spend some time thinking wonderful memories, what you love most about Leo, what you love about yourself. You are so loyal and strong, yes strong, even if you don't feel it. That's strength's way...it's usually called upon us when we least feel it and don't know we're up to it. I hope today can be a day of quiet reflection and recharging. Thinking of you both...

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Dear Kay,

I am sorry that you, too, are still under the weather. I am just back from the doctors, and another good report on things, so from here, all is well.

I hope you are taking care of yourself and resting.

I go now to take my own advice.

*<twinkles>*

fae

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Good for you!

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Dear Shannon,

If you stop by, you are in our prayers, and I am sending special love and prayers to you, dear heart.

*<twinkles>*

fae

Thank you Kay, I do that on rare occasions. :) Take my own advice, I mean.

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Shannon, I am also thinking of you.

Fae, I read your post about being in a new place and am pondering and will respond tomorrow. I got tired tonight.

Mary

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1am and I'm feeling so sick with a bladder infection, and sinus infection. And totally exhausted from yet another day with more health crises for Leo. And just laying here trying to grasp onto reality and that I need to make arrangements for him to be cared for in a nursing facility which will end up being permanent. I mean how do I do that? How do I relinquish caregiving over to strangers? I feel like I'm failing him, I feel so guilty, my heart is so torn and hurt, the tears won't stop tonight... I finally did get him to listen to me tonight earlier and though he cannot get what he wants to say out in words... I knew what he wanted... he wanted me to stay when i said i was leaving, so I indeed stayed and got him settled and sleeping. But now I'm home crying alone overwhelmed. :(

And in 20 dys it will be the anniversary of my Mom's brutal murder when I was 15. I SO need her right now. More than I've needed her in the 24 yrs she's been gone.

Lord, please keep your loving hand on my darling hubby as he sleeps. And please let my Mama be near to me with her loving hand. AMEN.

I want to thank all of you for listening and bei g here with so many heart felt supportive words. They all mean the world to me.

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Dear Shannon,

My dear one, you mention your own illnesses, and yet you hope to do more to take care of Leo all at the same time. Even if you put Leo into a nursing facility right now, until you are entirely well and strong enough to do more, it does not mean it is permanent. Even if you need to have time to heal yourself and become healthy and strong enough to do more than manage your own health, it does not mean that things will be the same way forever.

Right now, your first priority MUST be to do all you can to heal yourself, to become well, to get strong again, and to be at peace within. I know this is a very hurtful time for you, with the anniversary of your Mother's death approaching and Leo so ill. But dear, you must take care of yourself even through the grief of loss and the illnesses of your dear Leo.

Please know that everyone here is with you. Many of us have been caregivers who let our own health deteriorate terribly, and so we are giving you hard-won knowledge. I am paying attention to what you are feeling and how you are doing, and I know that you must take care of yourself and get healthier before you can turn and care for anyone else.

Leo will be cared for and safe, and you must give yourself the same care and safety. Part of that is finding your own caring self FOR yourself. You need that from yourself right now. I did not have a Mother either, and I am still learning how to be loving and caring for myself. Fortunately, I had a great Dad, who did all he could for me. Please talk with your counselor about how you can better take care of yourself. I know others here will have good hints and suggestions for you on self care. It is absolutely critical for you right now, that you take care of yourself and get better. Begin by drinking more water. A bladder infection can be a sign that your body needs more pure water to flush out toxins and residue. Please see your doctor about this immediately if you have not already.

Thank you for letting us know how things are going, and I hope things will be better today. You are in my thoughts and prayers.

Blessings and

*<twinkles>*

fae

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Shannon, my dear, there is scarcely anything I can add to the loving advice you've been given by all our members here, except to say I pray that you are listening, and taking their wise counsel to heart.

I thought of you when I read this today: Feeling discouraged and unhappy?

I know your circumstances are different from those of the caregiver who wrote this letter, and I know you're not in a position to follow all the suggestions the social worker offers in response ~ but I do think it's imperative that you get the point that she is making, and that you find a way to lean on and trust in those who are there to help in Leo's care, and stop blaming yourself for all these things that are so way beyond your control.

You are in our thoughts and prayers, and that is where you will stay, as you work your way through all of this.

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My dear Shannon,

You ask how you do that...you do it because it is what needs done...for him, for you. You want him to have the very best medical care and that requires around the clock...no one person can be that. You have a bladder infection and sinus infection? You should be in bed! Do you have medicines? I sure hope so! You need chicken soup and green tea, I wish I was there to fix it for you (but then I'd give you this bug and you don't need that!).

I hope you will let the professionals take care of Leo and you be there (when you are well) for moral support and just to love him. I want to say this too, because my dad and my husband both died of heart trouble, so I know how it can be when they're not feeling well...they don't always think of us like they normally would because they are consumed with what they are going through, so it's easy for them to make a demand that isn't reasonable...like having you there when you are very sick. It's good to reply by listening to them, but not arguing, and to do what you know you need to do instead of giving in to an unreasonable demand. Yes we love them with all our hearts...and yes they love us with all their hearts, but we have to keep in mind when they are feeling at their very worst, what would they (in their RIGHT minds) want for us? They would want us at home taking care of ourselves and getting well. It is so hard to balance what we know we need to do with what they are asking of us, but follow what you know is the right thing, and not just your heart with what you would LIKE to do. That helped me a great deal. George's last weekend he got onto me for not being there but I was gone when I got the news he was in the hospital and I did not have a ride right away. His chiding me was not like him, it was his illness and fear talking and I knew that...I just listened, agreed, and did my best, instead of taking it to heart and feeling like a failure for not being there sooner. Do I wish I'd been there sooner? You betcha! But I also knew it wasn't my fault and I could only do my best. And I knew that George of all people would never have wanted to make me feel bad...at least not the George I'd always known, but the George who was facing his mortality was wrestling with a lot and was not himself...I understood that. I really hope you will consider what I'm saying and put your health as priority for right now because you need to get yourself well or you won't be able to be there for Leo at all, okay?

We are still holding you up in prayer and Leo too.

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Oh ladies, you are so wise beyond my almost 40 years. (And I don't mean old)

I need to re-read all your words. I'm just that overwhelmed right now, it's hard to take things in.

Part of my guilt feelings and failing him feelings stems from not being able to save my Mom, my unborn child, my Nana, and my uncle, and my whole life I've cared for them and everyone in my life... As far back as I can recall age 2.

Yes, I do have a bladder infection and sinus infection. Am on cipro and bactrim DS. Which is totally wiping me out. Drinking water, cranberry juice and tea.

Home resting a lot today.

You all are amazing to me... ((((Hugs)))) love and peace to you all.

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Shannon, it is no wonder you feel so overwhelmed...Leo dealing with his health issues, you with yours, anniversaries approaching, need to find a rehab/nursing home for Leo and all of us giving you advice. What if you printed out our responses to you and just pick up one a day and digest it...each one offered is comes with such love and great input and yet your mind is a fog...has to be. Leo can not be for you, right now, what he has been for you and that is part of the pain. Bill was also unable to be there for me for many months before he died...though he did try for a long while.

The bottom line to all we are saying is: love and take care of yourself; let go of self blame and guilt when there is absolutely nothing to feel guilt or blame about. Just know you are not alone...we are all here.

Peace,

Mary

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Hi Mary,

I get email whenever someone posts so I actually am looking back and reading everyone's heart felt words.

I'm off to sleep right now I think.

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I'm glad to hear you're taking care of yourself...now I pray it does it's job! Good night...

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Dear Shannon,

I am relieved to know that you are taking care of yourself, that you have medications to help with the infection, and that you are being mindful of the needs of your body.

It is good to hear that you are sleeping, too. I know sometimes it seems very difficult, but I hope you can find 24 or 48 hours when you know Leo is all right. When you do, use that time to simply, completely take care of yourself.

I was Doug's full-time caregiver the last many months, and I now know that it would have helped both of us if I had been able to relinquish my post a few times and take myself away to get rest and care for myself. We learn after the fact, but sometimes, we can learn from others. So, if you can, when things are a bit easier for you to do so, try to take those 24 or 48 hours of uninterrupted time to sleep, rest, relax, be bored if you can, and just let your awareness flow into you and heal your own body with love and peace.

I know relaxing a bit and resting is not easy when the one we love is in distress, and when every minute is precious. But you will be able to care more, worry less, and find love in the minutes if you can take a break to let your own heart and body restore a little bit.

Meanwhile, and all the while, you are in my prayers and in my heart, and I hope you find time for resting and relaxing, even if only for a half hour at a time.

Blessings, {{{hugs}}} and much love,

*<twinkles>*

fae

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Fae,

Thank you for thinking of me.

It's past midnight here. I'm really struggling. I really need Leo. He's just not there... I mean not physically and when I'm there with him, he's sadly "not there" cognitively or emotionally. I'm trying to accept what I cannot change.

My heart is so heavy. Not only because of him. But because I'm being bombarded with the anniversary of my Mom's murder in 11 dys.

And really, I'm still finding it almost impossible to iterate all I'm feeling. :(

Crying a lot right now. I see my therapist tomorrow.

It hasn't been determined where Leo will be going as far as a nursing facility. He needs to be in the hospital right now. One day at a time.

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Thank you so much for letting us know . Sleep, rest, talk to your therapist, and come here when you need more support. You are going through an incredibly painful and unsettling time. I wish we could all gather around you and hug you, dear one.

Please consider yourself very well hugged! {{{hugs}}} and {{{HUGS}}}

You are such a brave and caring person. That is not always an easy combination, especially when there are so many emotions you are feeling, and when you are brave enough not to turn off from them. But I hope you can find a way to distract yourself with a movie, a book, a delicious and healthy meal, and some warm and soothing herbal tea for a little while.

Be the best friend to yourself that you can right now Shannon. Be gentle, patient, and mostly, compassionate to your precious and darling self, to your heart, your body, and your spirit.

We are all here, praying for you, sending love, and holding you in our hearts.

*<twinkles>*

fae

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