[Nik-key]

I come here and lurk often. Today, as I am feeling so overwhelmed, with no other forum having activity that pertains to my situation....I find myself posting to this compassionate group.

I would like to talk a bit about my husband (Lynn). He has Alzheimer’s and it slowly, day by day, inch by inch stealing him away from me. It is just ripping my heart out. We have been together since 1985 when I was
just 18. It seems like such a long time, but so short too. I can’t imagine a life without him. Though I am already grieving daily for the parts of him, of us … I have already had to say good-bye to.

We went to my neurologist for my check up yesterday. We have a very close relationship, and he helps in the care of Lynn as well. My doctor went over Lynn’s test results from the week before at the VA clinic. In just 6 months, his cognitive thinking test has changed remarkably! He could not subtract 7 from 100. He drew a clock with 15 numbers. He could not recall family members, major life events etc etc
I was just SHOCKED. My heart is breaking.

I have several medical conditions of my own. I have always prided myself on my positive outlook, and the struggles I went through to get to where I am. As some of you know, my Dad took his life in March. Needless to say, my coping skills have gone right out the window! I had a good handle on it, it was breaking my heart, but I was coping. Since my Dad’s loss., I can’t. It isn’t for lack of trying….

Yesterday, in the kindest way possible, my doctor told me “ something you need to know, and keep in mind… Alzheimer’s is a terminal disease. As such, if he develops secondary conditions, such as phenomena, or infection for example… most doctors will advice you to not treat him… a word you may recognize is Hospice.

My reaction……OMG!!! Am I hearing what I think I am hearing???? Are you saying, if he gets sick,
I am suppose to refuse treatment so he can die faster???!!

I of course starting bawling! With tears in his eyes, as he cares deeply for Lynn …. He said yes Nik, that is exactly what I am saying. He said it is “standard medical practice” with terminal cases. And in cases such as Lynn’s where the Alzheimer’s is so severe … it was the kindest thing to do. He said it is only when family member can not let go, and insists on treatment , that they would treat him. I know he said this in love, he has seen us through so much, so much.

We all have heartbreak, it is part of life. So I wont go into my life. I will only say I have in the past turned my back on God. With the recent loss of my Dad…. and now the impending loss of my husband, my life….
I fear this is where I am headed again. Since yesterday I have been repeating two words over and over. Some times out loud, some times silently ……… I’m Done.

[Doody]

(((Nikki))) Dear sweet lady, I am so sorry for your losses. I wish I could make all the strife go away for you. From what I've seen, you are a strong person...but I completely understand the I'm Done. I'm hoping you have a surge of brightness soon to get you out of that I'm Done feeling. We care about you so much.

You're lucky to have a doctor whom you trust and care about so much.

Much love to you ((Nik))

[DejaVu]

(((Nickey)))

This all must hurt you to the very core of your being, infact it shakes the core of your being and the core of your belief system.

Please understand this "shaking of the core" is a "normal" and a "healthy" response to all you are having to deal with.

These words that come to you: "I am done"... I'd encourage you to explore them a little further. It may not be that you are "done," period. You might find there is more to the meaning of: "I am done?" There may be many things you are "done" with? Yet, there may also be things you are not so sure you are "done" with?

And then again, it may feel like you "are done" with everything?

Don't deny these feelings, but do remember they are feelings and, although we often think /fear feelings will never change, somehow feelings do change ... in time.

I cannot imagine all of what you must be going through.

Yet, I would like to tell you that I do think you made a great effort and a great decision to post her today!

I'd encourage you to continue to post here just as often as you wish to express anything at all..whether daily, hourly..whatever suits your needs!

There is a huge community here of very compassionate people, as you know!

Let us try to help to support you through your journey, it would be an honor to walk beside you during this time.

(I personally, will be away for surgery shortly; however, I will return as soon as possible. You and yours will be in my mind, in my heart and in my prayers while I am away. I just know many others here will take great care in trying to help you!)

Please continue to take excellent care!

Be very, very kind and understanding to yourself, please. You deserve this self-compassion!

I will be lurking, even if unable to type!

We are all here to help! There is great power in "community!"

[KathyM]

(((Nikki)))

My hat goes off to your doctor. He obviously cares about you too because he had the strength to speak the truth to you in a heartfelt and humane way. Many professionals don't have that much courage. It would have been nice to fill you with hope, but it would only drop you harder when you discovered the truth. At least now you know what you are dealing with - as if you didn't know before. Even when we know all about reality, it tends to keep slapping us in the face.

Maybe this is why your father decided you needed to have a little more fire in your blood. When the time comes when the professionals have to turn their backs on you, you'll be able to draw from the strength your father gave you.

It's a VERY hard and rocky road you are forced to walk. I'm glad you can hold onto the hands of your friends along the way. Feel free to throw some pebbles at us whenever you get the urge.

[Burntmarshmallow]

Nik
Most of what i want to say i need to pm you
but you are in my prayers and i am so sorry for all the past and present trials .
Keeping you and family in my most deepest thoughts and prayers.
BMW

[bluenurse]

Nik,I don't have any words of wisdom to give you, and I can only imagine the pain and sadness you must feel. I am just going to keep you and your husband in my prayers.
You may,at one time, have turned your back on God, and that is understandable in your situation.I think we all have done it. But God never turns his back to you , He is with you always.
Thanks for sharing !!

[Chemar]

Nikki

my prayers are joined with those above for you and your husband.

praying that God will help turn the "I'm Done!" into a done with trying to cope with this alone and let Him carry through this.
I will keep you and dh in my prayers and so hope you will feel encouraged and strengthened and always always praying for miracles where things may get better

[Curious]

[BJ]

I have no words of comfort Nikey that already haven't been said. My heart goes out to you and your DH. Please don't turn your back on God. He is listening, He is there, He does care, He loves you

[Nik-key]

I can see why this is a popular forum and so many care about the people who post here. Doody BMW Alffe BJ Curious Kathy I just you all and my SOS family.
Dej, I can see why so many are offering you their support, you give it in abundance. Your reply moved me to tears. Blue, Chemar -I thank you too for your support and understanding - and all of your prayers

I am indeed lucky to have Dr B, it took me a long time to find him, but I refused to stop looking until I found the one I clicked with. You are also correct,, he does care for me, as I do him. We have been through so much, he has always been there, above and beyond the call of his duty. I consider him a dear friend.

I have to say, my sister was a bit perplexed by my reaction... I was bawling deep into the night, she said Dad huh? I said yeah some of that too, but tonight, more so for Lynn and the shock of it all.

She was a bit like umm how did you not know? In my defense, I can only say I didn't let myself ever think beyond the here and now. Now, by that I do not mean I had my head buried in the sand, I read all I could, I have plans in place for emergency etc...but I did not let it consume me either. I saw no point in losing the life we now have, lost in the tragedy of what was to come. Does that make sense? It sounds so right in my mind.

I knew the future would be a bleak one. I knew he would continue to progress. I am no novice here, he has had this for years, though he wasn’t diagnosed until it got so bad he couldn’t work in 2004. I have slowly seen every single change, my heart is breaking bit by bit, in slow motion…….I knew………I KNOW…..

But, I was always told he may not progress this fast, to hold out hope. I was never told he was terminal.
In fact, what I have been told over and over, have read over and over, is that most patients die of secondary conditions, before Alzheimer’s kills them. Well, NOW I KNOW WHY!!

That he has progressed so badly , that the need was felt to tell me he was terminal, to tell me about hospice should he get sick…….. Well the proverbial rug was just ripped right out from under me. When I say I am done, I mean - I AM done, and at this point, I mean with everything.

The fighter in me, that yes my Dad did help create…. But now has also damaged deeply…. Knows that I must protect Lynn above my own feelings. This is just killing me! What I keep thinking is, I have put a beloved pet down, because I loved them to much to see them suffer….. Why then, would I try to continue Lynn’s suffering if a secondary conditions takes over. It isn’t an easy answer, and only God knows what I will do, when the time does come. I would like to think I love him enough, to want him free of his pain…

I need to figure out a way to talk to Lynn’s children and his two sisters about this. I keep thinking about when my dear Grams was dying last year…. She had a massive heart attack, her 3rd…and 70 percent of her heart was damaged to the point of no repair. I remember the turmoil of our family, some wanted her to have every means possible to try to save other, others wanted her wishes and living will followed. It was such a hard time for all of us, we didn’t want to let her go! Having to talk about these decisions only made it harder.

All I DO know at this point, is that as a family we will have to talk this out. I do not feel strong enough now to do so. But…. I also know, I will be beyond grief, unable to cope with it, if this waited till it happened.

Wow, I am spent!! Thank you all for listening.