As I write the tidbit scenes of my love story with Husband, I am filled with a nostalgic joy, the memory of anticipation, the thrill of our marriage of nearly 20 years, and our now teenage son.
At the same time, the thud of our present circumstances seems to twirl the present and the past into a surreal mix of agonizing happiness, of hopeless hope, and a longing that stretches across this farm to once upon a time.
Today, when Son and I visited Husband in the nursing lodge, Husband wanted to come home with us for the night and I had to, once again, say no.
I never realized until today how horrible the word ‘No’ is.
jmgoyder 
Beautiful turns of phrases and poignant.
Thank you – it is getting really unbearable so I am going to have to think up some new schemes.
Sorry things are reaching such a tough place. Debilitating diseases don’t just ravage the body. They ravage emotional strength too. But you’re endlessly creative. You’ll find ways to cope and express yourself.
I used to be a nurse so I have seen so many different afflictions but Parkinson’s would have to be one of the worst seen at closehand.
“No” is a terrible word… but, it is one we MUST learn to use. Believe it or not, many times, it’s what will keep us sane. Many blessings to you and your family 🙂
How generous you are – thank you Greisy! Jx
Not easy… my heart with you dear Julie. Love, nia
Thanks so much Nia – it is getting very hard because he is too heavy for me to manage during the nights and he needs two nurses but he still thinks he can get better when I know he is getting worse – so awful. Juliexx
Love is just as much about Letting Go (as it is about Drawing In).
Love is about being Strong (when the one you Love is losing Strength).
Love is about saying No (when you really want to say Yes).
Love Just Is (as it was Before).
You are a poet!
Are you visiting too often? Would visiting less often make it better or worse? I don’t know. Just asking.
This is a very good point. He seems okay when I ring him and don’t visit (this happened for a few days when I had flu) but when I visit he gets sad because he can’t come home for the night. We do the day thing but even that is becoming nearly impossible because he is so immobile – such a dilemma!
My heart weeps for you Julie, yet at the same time rejoices that you have known such love in your life, and Husband also. All the best, prayers for a few more of those fleeting moments of joy between now and then.
Rhonda
What a beautiful thing to say – thank you Rhonda – Juliex
This is heart-wrenching! Thoughts go out to you for peace.
I have to figure out something to make things better for him – am running out of ideas!
This breaks my heart for you. Sending a big cyber-hug your way and prayer to heaven.
I need to figure out a better way – thank you so much for your thoughts!
Julie, is there any possibility of getting a nurse to come along to stay for his overnight needs? Don’t know how it works where you are, but here in the states we have “visiting nurses” who can come and help out a few times a week. Most insurances cover it too. But then, having a stranger in the house might not be an option for your family.
~*~*~*~
I thought of this several times when reading here, and decided to share it with you. I have had it hanging on our kitchen wall for almost as long as we have been married.
“To love someone is to know the song in their heart,
and sing it to them, when they have forgotten the words.”
Its words were so meaningful when I watched my Mother-in-law, Anne, caring for Bob’s father. Eventually she had to do what you have done. Trips home were not an option for him so we came to visit as often as we could. We talked and reminisced, and I think I learned more about him during those visits than I ever had before his illness. But it was so wonderful to see Bob’s mother singing his song to him with all the love in her heart when we brought her there for visits. I pray that I have listened half so well as Anne did…
Or you have. You’ve gotten the song down by heart. It is evident in your love story. Just sing to him Julie, be there as often as you can, and just sing it for him.
Sending my love and a prayer,
~ Lynda
What a wonderful comment, Lynda – thank you.
It is very difficult where we live to get a nurse who will stay the night (although we did it twice before when Son and I had to be elsewhere). Also, our house is tiny and there would be nowhere for the nurse to sleep so it’s awkward.
Your song idea really touched me. I think I am avoiding spending more time with Husband in the nursing lodge and this is something I need to do more now that coming home is so difficult.
Can’t thank you enough for your beautiful words and what you say about Bob and his ma.
Juliex
I was afraid of that. I know what a long way out of town it is. I also understand how hard this is for you. So then I guess you will visit as much as you can handle, and as often as you are able. This is a very difficult time for you, so give yourself permission to have a rest and a break when you need it. xo ~ L
I will do as you suggest!
Love is butterflies and ectasy and it is also long-suffering and painful. I hate that you have to say NO but there is no doubt in my mind, that husband knows you love him. Thoughts and prayers to the three of you.
Thanks Diana!
most words have the connotations we give it, the word NO can be the most loving and caring word in the vocabulary! we tell our children NO to keep them safe until they can learn on their own what is dangerous. as a nurse you surely had to tell patients NO from time to time for their own good. we tell ourselves NO as you did with all the blogs and that was loving yourself:)
Rhonda is so right on with her comment. that is why i have said my dying is not a tragedy to me. i was given the gift of love and the tragedy would have been to die without ever knowing just how remarkable love really is. your husband will not be going through this alone, he has you and that is a gift beyond anything we will ever hold in our hands.
of course he wants to come home and in his mind it seems ok. this is the time to use the word NO in the most loving sense. it is no good for you, for your husband (something serious could go wrong at this point and you might not be able to get help expeditiously) or for son.
julie my heart goes out to you and i continue to believe that your husband is blessed to have you and son. please keep taking care of yourself and saying NO with all your love.
as for not following 170 blogs, i must say that is unhealthy and glad to hear you realize that. no one is going to stop reading your blog in retalliation. if they do then shame on them and they are going to miss a piece of life that is so real and beautiful.
continued blessings come your way,
sandra
Hi Sandra – considering what you yourself are going through, it is more than generous of you to comment and I thank you for your wisdom and thoughts. I have really taken in what you have said here and I bless you back. Julie
yes, saying no to a loved one is very hard to say. i know oh too well
I think you would know this better than anyone!
Difficult and sometimes necessary. You presented this with such feeling and nostalgic sentiment that I think we can all feel a little of the grief. I’m sure your husband understands.
I think, deep down, Husband does understand too – thank you!
Hope you’re feeling more up today.
Nope – sorry, just kidding – much upper!
*tears for you – sniff* I’m sorry. The worst part is not being able to do one dern thing about it. Yes, the idea of the visiting nurse is good.
So heart wrenching.
Be sure to take your breaks when you need them.
Sending big Texas love to my Downunder friend… XO
You are a good soul – thank you!
That must be so hard! You live out so many emotions each day!
I think we all do!
You’re such a strong woman, and to remain strong (and preserve some sanity) you have to say no sometimes. I can really feel your pain in this predicament.
Not strong but trying – thank you so much!
The last five weeks of my mom’s life I went to the hospital – or wherever she was – at least twice a day. It was heart-wrenching, because she wanted so badly to go home. She’d beg me to get her out of there, and just take her home – and I had to say no.
I wish now I’d stayed with her more, but I had to work – and the truth is I was there enough. It’s just hard to look back and wonder, should I have done this or that? But there’s an old saying that’s very wise: do what you can, and not what you can’t.
Thank you so much – I am going in again this afternoon with some more clothes for Husband so this time I am going to try for some humour!
I can’t imagine how hard that is. It seems we spend our lives in and out of relationships that wax and wane between being on the moon and being on the floor, and being in relationships that change in their dynamics that put us in places that just aren’t where we’d choose to be. My heartfelt prayers for the three of you to find a peaceful balance.
Thank you for your wise and lovely words!
So sad for you all.
Me too!
Sweet Jules… all I can say today is please consider yourself gently hugged.
Thanks Toni!
We’re sorry you are having such a difficult time. We hate the world “No.” It doesn’t ever seem to be used in a positive way. Except our mommy did tell us this the other day: “No, the weird animal mowing the lawn won’t eat you.” That was a positive No.
*Hugs*
Bella and DiDi
I’m so glad to hear the weird animal didn’t eat you guys!
We are too!
Ugh, so tough, but beautifully expressed. I really feel for you, I do.
Lacking your talent, I must resort to an emoticon to express my sympathy 😦
Thanks doudou! I don’t have any talent – just sort of saying it how it is. Juliex
Are you able to stay overnight with husband at the nursing home on occasion, Julie?
It’s not allowed unfortunately but I might be able to wangle it!
Ouch…I felt that sharp pang in my gut when I read your last line. Soooo sorry.