sweet abby*, I saw your post about 4 months today. Please accept a heartfelt hug from me, I wish there was more I could do. You are precious.
As for me, I am ok...Dado is still falling but not as bad. I was very sad this morning, and allowed myself to be. Just like the energy was sucked right out of me. I am off work now and that is something I have never known! Perhaps for 4 to 6 months, my sisters legacy will pull us through for that time.
Tomorrow I am going to make myself do some yard work, some cleaning, and try, to put off any decision making for awhile. I have been looking at facilities and it has been an eye opener. then, I see him on his chair with one of those crazy cats in his lap, and know I just cannot quite yet. However, getting all paperwork ready and checking out possibilities.
How I care for all you here, and ache for you, and try to know that so many hurt so much more, and yet still reach out.
Nice timing abby*, on the calling out to me, and Nikki. thanks! Your turn Nikki.
Glad to see your post Coco. And, of course we all are concerned about you and glad to see Nikki posting as well as Abby...both of them know the ropes and that is so important to everyone to have such good support.
You are very strong Coco, stronger then you probably know. This AD is just so terrible for so many. Please keep us posted on Dado's condition and how you are doing. (Hugs and more hugs).
((Abby)) you are so sweet and how I have missed your support, compassion and loving heart ♥♥♥ How are YOU my dear friend?
I will try not to be gone so long when I need to take my next break. It isn't that I don't care, it is more that I care too much.... when it starts to suck the life out of me coming here, I need to step back and collect myself... reload and prepare for the next battle. Not sure that makes sense to anyone but me :)
I have adopted Lynn's old saying for when people ask how I am.. I now say "I am on the right side of the sod". I can still hear Lynn's voice saying it and it makes my heart smile to now say it as well.
It is hard waiting for the "next shoe to fall" But I am determined to make the best of every day. I am still so very grateful for the precious time I have with Lynn, he is the light in an otherwise dark world.
And that leads me back to you Coco. Know I do not say this lightly, but I want to give you some food for thought...... I know right now you are having an inner struggle. How much can you handle, and for how long. And I know you deeply love your Dado and want to keep him home as long as you can....I also understand that you are reaching your breaking point. And that my friend is a place I have been and truly hope you are spared.
I want to give you a different perspective on placing our loved ones. It is NOT quitting! It is NOT giving up! It is loving them, and us, enough to give them the quality care they not only need, but deserve.
It allows you to free yourself from the daily stress that consumes us… But more dear Coco, what it did for me, AND for Lynn, was to allow the love to return in full force.
I will be brutally honest, as much as I did love Lynn while he was at home with me, it was often times very hard to FEEL that love. How can it not be? My Lynn was aggressive, but even without that, how can you feel the love when you are elbow deep in crap. Constantly not only walking on eggshells, but trying to carry the brunt of a world gone mad, alone …on weary shoulders.
I always felt I had to be the next Nancy Reagan. Keep Lynn home, sacrifice my everything, and always wear a smile. I tried desperately to do just that... until it nearly killed me. Now I clearly see how stupid it was of me to even try…. Nancy had 24/7 help, and I bet that smile was hiding her damn tears.
Coco, you will know when the time is right.. but it IS so true, often times we wait entirely too long. While you go through the battle of should I, and when… please also keep in your thoughts, that though without question it will be difficult, it will also free your heart and mind to be able to feel the strong love again.
Through it all…. Love remains…. That is what keeps me going, that is what I am most grateful for. ♥♥♥
Nikki--ditto on the next Nancy Reagan wannabe here. Why do we do this to ourselves???? The caregivers at Steve's ALF see my (our) devotion to each other during our daily visits, see that he hugs and kisses me, he will comply with anything I ask. They comment on it to me. It validates my decision to place him and that I didn't have to destroy my life completely by keeping him at home any longer.
ahhh..Nancy Reagan wanna be, that may be me too. Thank you for brutally honest, when I dig deep and try to glean the truth, the brutally honest is often the thing I need to hear.
Just a brief note., to let you who care know, that if you do not see me much, know that I am here, and care. Lots going on right now with two girlfriends coming to visit.
I will be posting soon about some hopeful news, and how blessed I am sometimes. Here is to all of you, I care for you, and I only wish as always that we could all find some sort of "solution" to this crazy disease we deal with.
Nikki has posted on FB that Lynn is in ER; thinks it might be pneumonia.
She just posted this:
they dont see the pneumonia yet, just like in April.....his blood count is really high, so are treating for pneumonia. Will wait for other tests to come back. They just asked me if I want him to stay here in the hospital or go back to GV...tough call!! He can have IV's at GV, i can spend the night...but more i think it important to get him back to his "home" where he is so happy.
Reality check here folks - Nancy Reagan never changed her husband's diapers, or cleaned up poop from the walls and floors. She had 24/7 help (as Nikki said). That 24/7 help included Secret Service Agents, nurses, aides, cleaning people, and anyone else she needed to do anything and everything. That did not ease her emotional pain, but she surely did not have to do any of the 'down and dirty' caregiving the rest of us do. That is why she was able to keep her husband home until the end. We should not and cannot compare ourselves to Nancy Reagan. We do the best we can with the resources we have, and then when it's too much, we place our spouses into 24/7 care so we can live.
Joan, thanks so much for posting that. I was going to say something similar. No it doesn't ease the emotional pain, but.......... YES, we do the best that we can.
You are so right as usual Joan. The help she had was a big deal. Even the small amount of help I had made a huge difference in keeping my dh at home and once he became basically bed ridden he was gone in less then two weeks. Time and Help are a major fact in decision making and cannot be underestimated.
Joan--your point is well taken. I think, intellectually, we all know Nancy had tons of help, but emotionally, she became a role model for caregivers. It would have been great if she had become more of an AD advocate, but I guess her own age/health issues precluded activity in that area to some degree.
I miss you guys what with my guests here, but I do manage to peep in most days. So sad to see we have lost yet another spouse. Anyone heard any more on Nikki, and if Lynn is ok?
Having a nice visit with the friend who only has a few more days, I have not seen her in about 6 years and she is lovely and insanely funny. Dado loves her too and often will remember her name. She is spoiling us with wonderful meals.
The other gal is staying next door for a few months, I love her too though she is here for some kind of healing for herself. We sometimes do not see her all day and till the next, she gets migraines, and...sadly it seems she may be using the Oxycontin more than she needs. She knows I am in no shape or have the time to dig her out of her troubles, and respects that. Anyway, the lovely cooking friend leaves in a few days, and things will quiet down...
Dado spent 24 hours at the Adult Day care near here. It all went well, and seemed like he hardly knew he had been gone. He was well taken care of. I am now just a bit back in limbo on placement, I have the papers ready to finish, two places that seem suitable, and a fews months worth of support so I do not have to work.
I really, have to make up my mind about placement. You know how it is, when they have a good day or two, you re think it. Yet, he is going downhill, just when I think he is walking good, he will get his legs stuck and cry in anguish because he cannot move them. He stumbles, he calls me the wrong name almost always now, and he is of course totally dependent on me.
So...my thinking cap goes back on Tuesday when June flies off. Then I will have time again.
I always tell my loved ones how much this site means to me.
Coco--be strong re placement. I had my doubts too--but they were unfounded. Steve has thrived (well, relatively speaking) and hasn't really had much of a decline in 14 mos. I cannot tell you how much of a difference it has made to my mental/physical well-being. I feel like a person who has been brought back from the dead--no exaggeration. Even friends are commenting on how I always seemed sad (I thought I was hiding most of it) and that now, there's quite a contrast. You owe it to Dado and yourself to take this step.
Coco seems like you have had a good time with your friends though all the bad stuff that keeps on going.
The place you spoke of that was so close to you might be a solution for you at least until you get on your feet and can go back to your work that you need. If and when Dado gets worse and near to the end, if your desire is to have him home at the very end, you will be able to do that. They will know at the home and you will too...there are many signs that haven't been discussed on here and if you are aware of these signs then you can judge when the end is coming. Of course there is always those that have a heart attack or whatever and the end signs are not seen...
Of course, you and you alone will know what to do and will make the right decisions. Before Jim passed I was ready to place him in one of those homes where they had just 6 people and there were several within 5 miles of my home.