I was reading different members change in status with their LO's and it made me realize it's like we are getting hit by waves that are washing over us, one after another after another and they keep getting bigger and bigger.

The first wave is when you realize that there is something wrong with your LO.

The next is the doctor visit where the doctor says the words you are dreading....MCI, Dementia...etc

The next multitude of waves as you watch your LO lose one skill after another.

The wave of verbal or physical abuse heaped on you by your LO that is caused by this disease

The wave when you realize that there is now a stranger living in your home and where did your LO go to.

The responsibility wave where you gradually take over all responsibility for your home, finances, medical issues etc... you are now doing it on your own.

Then the wave when you are having your LO going to adult day care or respite or having care aides into your home.

Then the tidal wave when the actual placement takes place.

The wave of adjusting to your new life without your LO at home and you going to LTC to visit and having to be their advocate.

The final sad wave at the passing of your LO from this terrible life sucking disease.

I'm sure I've missed some waves because I forgot or I didn't experience it with my hubby. What do you think?

Lorrie - it was your post that got me started thinking about all that is happening to us in this manner.

In 2010 my brilliant warm funny lovely devoted darling physician wife showed her first symptom and failed the clock drawing test.
She was 58
Having seen my mother through Vascular dementia I knew what it meant.
I developed a series of strategies to try to hold on to every drop of brainpower and personality as long as possible
I maneuvered her work situation to maximize her pension when she retired.
I made sure she was never in a position to affect direct patient care.
I began to cutback my own professional commitments to be a caretaker.
I quit drinking so I could be as sharp as possible at all times.
I dealt with DWs hope that it was simply a side effect from statins.
I took over the finances after she made serious mistakes on taxes.
I have always done all the cooking. I am a heck of a homemaker

She is a hollow shell of the intellectual giant she was.
But her accomplishments still stand.
We sometimes read about them in news articles.

And so far we are holding on and have a semblance of a life.
Her pension and SSID are coming to the bank.
We can afford whatever care she needs.
We travel , make love, laugh together and support one another.

We have rules:
NOTHING is ever her fault, NOTHING
So when she leaves her pocketbook in the ladies room it was my job to watch that she has it.
If it deals with safety she does it may way.
Otherwise I will do anything she wants

We accept that Sh*t happens because of her memory, and if it only money we don't worry.
She is not allowed to "look" endlessly for anything, we just buy a new one.

(e.g. I collect the "single earrings", and re-mate as needed)

Perhaps my fantasy is that we can hold onto this bearable life longer than we might otherwise simply because
I pay close attention and "pick her up" if she starts to "wobble"

I don't have goals or plans or Bucket lists any more. There is only TODAY.

Thanks to all for letting me know how precious these days are.

Amber, you are right they do come in waves. I talked with our social worker about this and the fact that the grief also came in waves as we were going through this. I guess the only good thing is we are able to get back on our feet before the next one hits. Yesterday I was hit with a wave of grief and I just let it wash over me. I just let it have it way with me. And today I am better.
Please know you are not alone. We are all bobbing along in this ocean of pain and loneliness. Thank goodness we have each other here. (((Hugs)))

It is just so hard for me to write here lately . I constantly though read, and am so darn proud of all of you. Especially blue* and julia* this past couple of weeks. How I pray for the strength you have, for me, in the days to come.

I feel like I have been in "tide slop" for about a week now. Not drowning, not diving through the huge waves, but just a constant barrage of waves coming in every direction. And it is ME, I know. Yes, there have been ugly non supportive people, this is always a real tough one for me.

of course the worst, is seeing my guy, as I walk in and hug him in his wheelchair, and he whimpers like a little child. I had a vision of when he was home, he would wait until just one hibiscus would drop, put it in his pocket , and then go throw it in the bush. then he would sit there, and wait for another. For this memory I got thrown in to days and days of unutterable grief.

However, I went to a support group yesterday, and the very wise social worker said it all in her introduction, the denial, then the hopelessness, then the thought of jumping off bridges, (even though you would not). The group made me see that there are real REASONS, and that the outsiders that think I am just a whiner, are not the kind of people I should be around.

Thank you Amber for this very difficult thread. My heart is always with you and all of you. Please make sure to get help when it is all too much.

*edit to add* The social worker said, that now that I have done all the work, the placement, the unending calls etc, and now that I am truly home alone, that is why the grief is surfacing. I have the time now.

Amber
I understand and also experience those waves of sadness that just seem to suddenly wash over me.

Yesterday, I put a CD on and was quickly brought to tears by the memory of the feelings and love that we felt for each other. I shut it off because it is too painful to FEEL what I'm losing...we're losing..as he declines.

I think I am building walls to hold back those waves of sadness and tears!

Coco, my heart goes out to you and all here that are still on this journey. I too find it hard to post much on here now.
Coco, we were for a time at the same stage, I can't believe Reno has gone.
Be strong Coco, it's amazing where you find the strength when you need it the most.
When the time comes, there will be so many waves...relief, guilt, sadness, then peace with time. Thankful that Dh is free from the misery of Alz.
Family and friends have been amazing, we just celebrated grandson's engagement, he thought it was a good time to bring some "happy " back to the family.

Be strong...hugs

Okay, Crushed, now you have me weeping. I do remember that song from long ago. Funny, it has a totally different meaning to me now.