I know lots of you say your loved ones just want to go home---But how about you??? I know I am at my home but it is not the home I want to be in,it is not the happy home I have lived and loved in for 45 years- SO I too just wan to go HOME.. to the place where I could lie down on my couch and take a nap,sit at the table and eat an entire pleasant meal,run the sweeper or clean the windows without having one eye on Paul all the time.I want to be able to feed the dog,get the mail,take the trash out or simply do my yard work in peace.I want to be able to go to bed at night without setting alarms on every door- turning on the camera tv monitors and the extra audio monitors-making sure cath is on -bedrails are up,jingle bells on rails. OK I know this all sounds silly because these things ALL have to be taken care of in the best way I can and I know Paul can not help any of it.But as I sat here this afternoon looking around I just began to cry out loud about wanting to go HOME. Then of course I realized no one was listening and that I am NEVER going to feel at home again!!!!!!!
Somedays it just gets to be too much. It was dh that yesterday morning before I had to take him to the ER woke up almost crying and said he had to leave here he had to go back home to Illinois. I too knew just how he felt. I want to go home too...but, hate to say it, I want to go home without him right now. With my dh I think during this melt down he had this week part of the problem was someway/somehow he came to realize just how bad he is getting and with all the meds he knows he is not getting better. If I am correct this must be awful for them.
This junk can hit us in so many ways. Since it's going on 2 weeks since Jeff's been in the hospital getting his meds tweaked I've had such a longing to have him at least close by in the ALF so he can do an errand with me, or go to lunch on a good day--anything to establish a sense of "normalcy."
As for real home...yes, you don't want to be so stressed by caregiving that you can never relax in the very place you SHOULD be able to relax. Then, when they're out of the home due to some horrible, untenable progression of the disease...you STILL don't feel at home.
There's probably no way to win. We just grab comfort where we can, when we can.
Emily, you are so right ... when DH was in the hospital, home did not feel like "home" to me. Yet when he was released and was bedridden for a month ... home was not a pleasant place either.
Hard to get used to the fact that home will never be the same again.
Betty, I am so sorry ... I am exhausted just reading all the things you have to do. With DH in a wheelchair and limited mobility, I don't have to worry about him wandering off.
Right now he is into sleeping a lot ... weekends are very lonely because all he wants to do is get up, have breakfast, then go to bed until lunch time. After lunch, back to bed. He seems to have more energy when the aides are here during the week.
Oh Bak, You have such a load to do...i know what you mean...Home is just not the same anymore....will never be!
Yesterday was so bad i ended up having to give DH a pill to knock him out, I just could not take it anymore. He slept from 4pm till 7 this morning, and already it's started again. Someone's stealing his stuff already, today it's his wallet, no where to be seen. Looking for the wallet, I find his good gold watch in a shoe
I miss him when he's away, when he's home it's like a war zone, swearing and punching the walls out of frustration, then he complains his hand is sore
Ladies you are all trying so hard to get some peace. Right now my house is always calm and peaceful-and very quiet. No one to share a thought or moment with. It is a very hard thing to say-but I think I have it easier than you do. It's a trade off-and to be very honest-I think at this point I have the better deal. Not what I wanted-but what I have. At least I have Graciegirl to catch lizards and put them under my pillow. Yuck!
I was thinking the same thing bluedaze*. I can cook without having to watch the stove constantly. Gord would be marching through the kitchen carrying his assortment of security pillows. I would be freaking out for fear they catch fire. I can cook but I can't be bothered. My life is so much easier now and yet, there is so much missing.
Ladies Reading these posts brings back so many memories. Some good ones but many are not so good. All I can say is this. You have seen these stars and you know what they signify. Those of us who have them have earned them just like you are, by doing everything in their power to do for their loved one to be cared for without regards to their own being. Like you, they done it no matter what, whether they were professionals or not. And like you they done it out of love and compassion for the love of their life. This is a very horrible disease and it takes on many faces and causes many different kinds of stress. Someday you, like us will look back and say that even though passing was best for their spouse, the changes that occur in your life after they are gone are even worse and can last for as long as you let them before moving ahead in your life. It has been seven months already and because of my faith in our Lord I am moving ahead with my life and I pray daily for all here who are still in this journey or trying to move forward in their life that is now changed forever. May God bless all of you and carry you forward in this journey. Bruce D *
Bluedaze*, Bruce* and Jang* I agree. It is lonely and we wish someone was sharing our home with us but we do have it better then you still dealing with AD. I love being able to do what I want, when I want. But by the same token I would love having someone I cared about, to share small insignificant things with. I don't feel guilty but I do feel lonely and sort of in limbo. It has been over 2 years for me and I have adjusted.
this thread is so sad. Oh God bless you all. How how how do you do it.? You ones with a *, how loving and wonderful you are to say what you did.
Betty I am worried about you, I am going to say it here. As I worry about my own sanity too. We need to do something, we cannot crack, any one of us. God help us please help us.
bak, you put into words what I've been feeling but didn't know how to express. Having to watch them 24 hours a day is really, really hard. I also have to set alarms before we go to bed and have to get up during the night to show him where the bathroom is. Sometimes he is up and trying to get dressed in the middle of the night, thinking it's time to get up. Have to get him undressed and back to bed. I wanted so much to take a Sunday afternoon nap today but can't let myself do that. Never know what he may get into or wander off to. Bluedaze*, Bruce*, Jang* and Imohr*, I've tried to imagine what it will be like when he is no longer here. You have given us some insight. Complete freedom from all this but very lonely, right?
I can't say I am lonely. I am sad and I am afraid of the future. Mornings for me are the really tough time. Once I have gone for my walk, I seem to have managed to wrestle the fear back into a corner of my mind. I love being able to just go whenever I want to. It is just that that person with whom you grew up is no longer there. It has been years since we could discuss things.For the last months, language of any kind was almost impossible but there is nobody who could fill that void. I am told that I have been very brave and have handled my widowhood well but they don't know how I feel inside. I suspect that would apply to all of us who have our *.
To all those with a star and to those who are getting closer Live in the moment and take one day at a time because it takes everything you can muster to just complete that day. God gives you strength and blessings one day at a time and the only way to live and enjoy this life is to not worry or fear tomorrow until it comes. Looking ahead just causes anxiety of the unknown. I know that is a tall order but if you can do it you will find that life becomes much easier to enjoy. It is the little steps that make this journey bearable and the small moments that fleet through the day that brings the joy and peace you are looking for. They are free for the taking and the enjoyment you receive from recognizing them is what brings you through it. Time will fly by if you don't watch the clock or the calendar. Just step forward one small step at a time but never stop stepping. It is the small steps which will bring you to the other side of the issues you are facing. May God bless you all each and every day. He will bring you to it and through it. Bruce D *
Jang*--I am very interested that you are talking about feeling fearful. That you can relish the freedom to an extent, but that's there's an underlying fear. The farther Jeff has progressed, the more I am aware of that sense of fear becoming my constant companion, and I have no doubt it will remain.
What does it mean? I'm not sure. It probably has something to do with the way our societies are structured these days, and that rather than living in multi-generational villages or tribes, we tend to rely very heavily on the couple as our social unit. So when we our spouse is finally gone, there's a very primordial sense of fearful aloneness. You are separated from your tribe. Alone in the woods.
Realistically, I have people. But I don't live with them. I don't think our brains have evolved to accept aloneness.
Emily, I have thought about it a lot since I posted that last night. I think you are right. I have 2 sons although one lives in Japan. I have sisters and friends but it feels as if I have lost the other half of me. I feel off balance and as if I have no anchor. All of us who have dealt with Alzheimer's know that we have been on our own in truth for many years but our other half still completed us. Bruce, your words are the same as my niece keeps telling me. Look for the tiny moments of joy and don't look at or worry about tomorrow.
I think you are absolutely right emily. Today's society is geared toward couples and even when our spouses were still suffering with AD or any other serious or fatal illness - we were still "part of a couple". After many years being a "couple" and many years older, change to being a "single" is very difficult. Not something easily conquered. When you are young - change is comfortable - not so easy as we age. We have been "lulled" into accepting the life we had for many years and now it is a whole new ballgame. Like Bruce said, baby steps, but it is important for us to move forward and not backward. United we stand.
I understand all the loneliness coming from all you with your *'s and I know it must be a terrible adjustment. But for those of us still out here in limbo-worrying what is gonna happen from minute to minute-we or at least I just get so discouraged.The more I try to be strong and patient,the tired I become. There is no where that I can feel peace anymore-if I am away from him I am c onstantly listening for the phone and if he is with me I am in constant demand. Home is not home anymore but when I get a break and he is not here it is still not HOME. Yes he sleeps well at night but do I?? Well would you-with 2 baby monitors on high all night and he snores like a drunken sailor.(not even sure what that would sound like) so even at night I am on guard . Ok I will stop my complaining now and try to get something done at my non-home.
bak we, with the * experience much the same feelings as you about "home". Home is NOT the same as it was and it will never be again, for either of us. We have to "reprogram ourselves" to accept "Home" as it is now. Home, to me was with a loving husband and in our younger years children. Then we had to "reprogram" when the kids left home and I remember the adjustment then. Now you are having to "reprogram" for your current situation and we with the * to restart the final chapter in our lives. It is not easy....but all of us here, are struggling to stay afloat by keeping the connection with others here on Joan's - in the same boat. I think we are to commended for staying together - because there is strength in numbers. Like bluedaze said - I think we with the * have it easier. Take care...
Bruce, my biggest fear is that he will outlive me and someone else will have to do what I do. I find myself praying for God to let me live just one day longer than him. I want to be the one who takes care of him because I still love him to the moon and back...even now. Sometimes when he sleeps at night, I just lay there and look at him because he looks so normal. Well, it's 5:30 AM. Time to try and get that last couple hours of sleep. (((Hugs))) to all. G'nite!
I don't post often enough but am so thankful for everyone here, especially as I've seen the *s added along the way. My heros, heroines and tutors. Absolutely only those who KNOW, really know.
Bak, I wish I could hug you. I remember all those feelings so well. Those of us with the *s do have it easier than those of you still in the trenches. At least that is my opinion. You have the mental anguish we have but you have the physical work as well. I am constantly amazed when I am out that I can come home whenever I want. Of course, Cleo my cat is waiting impatiently if I am late for her dinner. Hang in there bak. You are doing an amazing job.
It seems like so long ago but I remember that too. I remember seeing him when he would come to meet me in a store and I felt such overwhelming love to see him walking towards me. That was before the disease of course. I really wonder if we will ever feel joy again. As Bruce said in this thread, we have to look for the tiny moments of joy. Just a hint of joy will help us.