I am not sure what is wrong with me. I am feeling unsettled. DH is declining week by week. He is in his 4th month of Hospice and I have planned and arranged everything I possibly can. I am as ready as I can be. So now I just wait. And in waiting I am thinking of everything I have done wrong. I feel like such a failure at times. How I wish I would not get impatient, or upset with DH. Early on in this, almost 3 and a half years ago. I was so angry at DH. We were heading to divorce. Little did I know that AZ was waiting in the wings to steal my DH, our future, our life together away. DH has not known who I am in so long. But just yesterday he gave me a hug and kiss. Again reminding me what I am losing forever. I am ashamed to say that I have not been keeping up with everyone here as well as I should have been. The pain is just so raw right now. I just cry when someone new comes along. What is wrong with me. As always keeping each and every one of you in my prayers (((Hugs)))
blue, ((((hugs)))) to you. It's the 'waiting' that is so hard! Nothing is 'wrong' with you, dear blue, you are just being the loving caregiver you have always been. Prayers for you.
blue, of course nothing is wrong with you, I mean, just read what you wrote. Then only advice I can give you to help, is to eat right and take vitamins, and try to get enough sleep. Drink plenty of water and a little wine.
Your posts are some of the hardest for me to read here, due to your youth and the rather similar swift decline our EOAD mates have. Also that you have children that are so young. Please know you are on my heart and in my prayers for strength, help, and a future that will eventually bring happiness. We love you.
I understand every single word you said and everything you meant by it.
"The pain is just so raw right now" - yes. I'm sorry but I get it.
"I'm waiting thinking of everything I did wrong" - oh yah. Put me in coach.
I don't see though where you comment on the trauma the disease inflicts, the huge stress levels and the months they go on increasing. I don't see where you mention how you've put aside your own life - just what could have been better.
In fact I don't see where you tie in instead of headed for divorce where you've done all this for him.
Blue, I was so beaten up by this I flinched visibly in the early months after my wife went into a NH when I remembered somewhere else I had lost my temper, or stormed out leaving her sitting there confused, or ignored her.
But this following year with her still there, I have learned gradually that it's all parts of the whirlwhind that is alzheimer's and the path of destruction it leaves. It takes time but I now know I gave up years of my life for her and whipping myself for the bad days that came along with giving everything I had - have blended back into a realistic picture.
The strain you're under is very real and powerful. Try to respect that. You are trying to survive it for both of you - that is the real story. And what this does to people is clinically powerful.
There is a new stress. Waiting and what that all means. You have nothing to be ashamed of. You're being a trooper. Hang on to the rope.
Blue, my heart goes out to you ((hugs)). Such kind, wonderful replies you received. I would venture to guess that unsettled feeling is something we all have felt a time or two. You are in a new, unfamiliar place. You have done everything that you can logically think of to prepare, but deep down you know there are something's you just can't prepare for.
I loved Wolf's comment "put me in coach", I too was nodding my head reading some of these familiar feelings. When I had to place Lynn, yeah I felt the world's worst failure. I too relived some of my not so stellar moments. The thing I came to truly know is I did my absolute best in an impossible situation. Blue, you did too, I hope you will come to realize that and that it brings you the peace it has brought me.
Please do not ever feel badly that you can't keep up with everyone here. Countless times I have had to take breaks from this site. I call these my "turtle times", when I HAVE to retreat into myself, into my own silence, so I can cope and handle the devastation. There have also been times when I am doing fairly well, but at that particular time, I just could not be sucked back into the horror this disease inflicts.
Though many think we are, we aren't super-human. We all have our limits and I bet everyone here understands that sometimes we just have nothing left to give. If you are in need of support though blue, please still come here, we care ♥ ((hugs))
Blue, There is absolutely nothing wrong with you. What is wrong is your circumstances....read your post....you are going though a huge milestone in your life. To not feel the way you do with overwhelming anxiety and an unsettledness do would not be normal. I feel so sorry for you and I am sending you my support and ((extra hugs)).
Do NOT ever feel guilty either.....each and everyone of us have one thing in common, but each of our circumstances is uniquely different. Each one of us is an individual who reacts and handles things differently. That's not to say that one is better than the other in handling stressers; it's just the way we are and how we handle it.
Take care of yourself. Try to get plenty of rest....eat right....and try, if you can, to take time out for yourself. You have been on this hospice journey a long time. You deserve time some fun and some time to pamper yourself...maybe a pedi/mani...massage?
Please do stop in when you can...and when you can't we are thinking of you, missing you, but don't feel guilty. ((hugs))
Blue...There's nothing wrong with you, it's another emotion we go through. Everything about this journey is unsettling, while we wait for the next stage and then the next. Will we be able to deal with it, and somehow we do. You are going through this waiting with great anxiety, it's only natural to feel unsettled I keep going back and wonder if I could have done things differently. kept him home longer.
Dh can barely get a word out, it's painful to see him struggle with it, tears come to his eyes, which then sets me off. Yesterday I set to going through some old VHS recordings, Dh loved to film the kids and grandkids growing up...just listening to his voice on the recordings now breaks me... It was said here somewhere, that the love comes back. ..and I'm feeling it now , I'm scared of what the future holds, putting up a big front of being brave. Hugs, Blue.
Thank you all for the kind words and support. I forget sometimes that this has caused me a kind of trauma and of course I am having a hard time. I guess I forget that not only my DH is suffering. I still think of myself as normal. LOL, and I guess in reality I am far from it.
I am glad to have the rope to hang on to. It does come in handy.
I will be ok. I have come this far, I will see this to the end. And the end is what is scaring the hell out of me. I am ready on paper. But nowhere near ready in my heart.
oh blue.....this just makes me cry. I too, am not ready. I am in limbo, just sleeping alot and catching up on home projects. Remember when we both quit our work to take care of our guys? It has been almost 9 months since I did, and I just cannot seem to get the gumption up to try to go back.
So now, while we can, love our guys, glean all we can, while we can. And we will be ok, we will make just like all these brave ones here that have. We can look to them, and know, they are behind us despite the fact we cannot be physically together.
I would do anything to help if I could blue. I just send you all the love and caring I can.
Julia he sounds so much like Dado, your husband, when they try to talk and cannot , the tears just roll out. Oh how can we know how they feel?
Yes, so much alike now, and I think you came here a bit after me Coco. It will be 1 year next month that Reno went to Nh . I can't believe how quickly he declined in that time, though I think Dado declined much quicker.
yesterday he slept all day, wish I could sleep as much as he does, can't remember the last time I had a good sleep right through. i tried to ask him if he's in pain, he just looks at me with a blank stare.
Blue, I don't know why that is but the 2 things I ever did to Lloyd out of impatience and anger haunt me. I hit his hand with a hairbrush one time because he was trying to rip my curtains down. Another time he hit me and I pushed him and he fell. Unbelievable, right? After all the years of everyday love and care and those 2 things haunt me. Now that he is gone, I just sit and bawl over this stuff. God, I need counselling. I keep thinking that it will pass...that I will be ok in time...that this is all normal. I used to pray that he would die quickly and painlessly in his own bed. Prayers answered, but I still miss him horribly. Oh, I am glad that he doesn't have to go through all this anymore, but why can't I feel better? I hate baring my soul like this, but if it touches one person or makes any sense to anyone, I guess it's worth it.
Linda Mc* I know your DH would not want you to be thinking about these two events. Just two. Out of how many years of loving and caring how many hours in a day, week, year, years. And two events that took a minute or so are what you remember. How sad that our minds hold on to these. I sometimes think it is survivors guilt or something like it. If tables were turned I know my DH would become every bit as frustrated as I am at times. We are only human. And who else can do a job 24/7 with our hearts being ripped apart and not fall or fail at times. Be kind to yourself Linda and know that this is not how your DH would want you to remember your time together. And don't be afraid to open your soul to us. Like Wolf said this is a trauma we are going/ have gone through how could we not come out wounded and broken. You need time to heel.
linda mc we have all had moments we wish we could rewind in our journeys. we are distraught overstressed and pushed to the max many hrs of the day. its only human to lose it and react sometimes to the things we go thru. you are no different than any of us friend. don't beat yourself up over what was happening in the past. your last days of caring for y our dear Lloyd helped him move to a better and happier healthy place and now he knows the love and devotion you shed while caring for him. and the losses and pain you endured. give yourself a pat on the back and release those guilty feelings and allow yourself to enjoy the good you provided for him. you have asked for foregiveness and its been granted. try to move on when its time. he would want you to be happy and start a new version of life. divvi