Me three! Sometimes I even wish my DH would get worse so I can place him. From the way he has been talking today that might be sooner than I think and then I will probably be like everyone who has placed their LO and feel just as guilty as they do or did.
Joan, it took a lot of courage to post this. These kind of thoughts run around in my brain and I try to ignore them. I know he is not happy and content and every day I see more decline. And I am so tired, physically and mentally and wonder if I am going to survive to live another day.
I agree with all of you. I hate the thought of the life I am living and will I be able to recover after this is all done. Some days I want this to be over with SOON and yet have to come to terms with what that means. May God forgive our thoughts.............
Shoot!! I can't even bring myself to tell my husband that it is okay to leave me and let go. - and I should. And I know it. And he would be better off, and so would I. When all he can do is sleep, and open his mouth for me to give him baby food, pudding, applesauce, etc. - doesn't open his eyes hardly at all, can't talk - no emotions - for months now....
Yes, we want them to be at peace, and yes, we don't want to lose them. This disease is horrific.
Joan, I dare say at one time or another anyone living this hell has had similar thoughts cross their minds. I personally think it is our natural instinct to survive. We have no control over them, so feeling guilty about them is a waste of time. I know, easy to say but hard to implement. If it helps at all, I too use to have some of these feelings... we all find a way to live through them while still giving our loved ones the best care we can possibly give.
And now ........I am on the opposite side of the fence. Now I pray God will keep him comfortable and happy so I don't have to feel guilty for wanting him to stay with me for as long as possible. This is one hell of a rollercoaster ride isn't it! *sigh
((Mary)) I can't imagine.... and my heart aches for you. You are in my thoughts so often..... ((hugs))
I have always prayed for a speedy trip on the dementia train. So far my prayers are not being answered so I'm working to change my life now, while he is receiving excellent care in a facility and I have all the time in the world, and hardly any money (I am private paying) to do whatever I want to do every day. I am not living in two worlds. Can't be done. I'm living in the world the Lord saw fit to give me now and it's okay since it's all I've got. I spend as much time with friends as I can manage. I go to bed and get up when I want to. I eat what and when I want to. I treat myself to a movie or inexpensive shopping trips. I'm finished mourning the old life "before" and I'm not waiting for a new life "after". I'm trying to live each day the best I can manage. And, when I have a bad day, as we all do, I just let it come and know maybe the next will be better. Took a long, long time to get here, but it's not the worst place to be. I believe I have already lived through the worst days.
How do we get to this point in our lives??We chose to love and care for our husbands,but when I got married 45 years ago,I never heard of Alzhimers or any disease that could be this horrible!!! I have thought of cancer and all the other dreaded things we knew about and was ok with the in sickness and health part.BUT this is so much harded to deal with-I look at my DH and somedays I just DO NOT LIKE HIM ANYMORE,of course I love the man I married but this is not him. Somedays I dress him-feed him-wipe his nose-and wash his face-,and he does not even seem to notice a difference. Do they not know how different things are ? I hope they do not know why should we all be miserable. We don't really want them to die -we just want them BACK and we want our lives back.How are we to survive and live with guilt.I feel guilt all the time because I am so unhappy!!
I have gone thru all the emotions expressed above. Jim has been in a NH for over 3 years. I still see him 6 times a week but somehow I have managed to put the guilt aside. I am doing & going to places-movies, plays, musicals..that I know he would not have enjoyed. My greatest sadness is for him because I know he is unhappy with the life he has. I feel if he had known more about alz & not been in denial he would have commited suicide...Most of my life has been putting jim & the family first. I am now taking care of ME..Still miss those big bear hugs...
Conflicted is right! We mix our feelings with guilt, hopes, bits of knowledge, our current reality etc. and come up with a tangled up mess which then pastes a pall over what we are dealing with and makes everything seem even worse. Let's back up. First, generally from the very beginning we look for the positive,the good in our future. We learn that it doesn't always happen, so we learn to get through the rougher bits and work for the good. We learn to wish for the good.We learn to wish for the bad to end quickly. None of these feelings have anything to do with the reality of the situations--just the feelings they give us. We don't want the hurt, the relentlessness of Caregiving. Those feelinngs have nothing to do with wishing our LOs gone. Our feelings are valid. Guilt has no place in that. Better we accept the fact that sometimes things are crappy and we wish they weren't. No guilt in that. Hopefully wishing them not so bad doesn't get them replaced with worse. In the meantime maybe we need to give ourselves some slack. There's a long way between our wishes and our reality,. Maybe relaxing our effort to make everything good--wish everything good, could let us see the good we still have--our LOs are still with us to some degree. For those just beginning their lives with a *--your LOs no longer suffer and you've been freed from this war. Time to move on. No guilt in that either. Let's dump the conflict and get on with making our lives as good as we can. Wishes are just unfulfilled desires. Look at them realistically, and then see if maybe it might be possible to make some of them happen.
I read your blog and that certainly is exactly how I feel. I want to go on with my life but when. I can't just abandon my hb. I made a committment to stick with it til the end. I don't know when I'll be able to enjoy living again but I hope I'm not too old to have some fun. We all have the same feeling. You are such a wonderful writer. I love reading your blogs because you are talking about all of us caregivers. God bless you.
The only comment I wish to leave is this one: You are all wonderful and I couldn't have better, more truthful, caring friends. Big hugs to us all for having to deal with this nasty disease.
i can imagine how hard that was to put into black and white joan. i dont think any of us can honestly say we havent had the same thoughts as we journey thru this disease. the only thing thats coming to mind as i read thru the blog was the bond that we have formed in marriage and how very difficult it is to have to break that bond. death will be the breaker. but the irony is the word itself. if you think on it -a' bond' is a contract thats paid at a later date on good faith:) and with interest, and the premium is paid at 'maturity'..humm. i can relate to that. the association with the caregiving while married is much the same.the final return is delivered with death i agree that the 'choices' are unacceptable but it seems its going to be our only way to iniciate that next life. i cant live in two worlds either so i take one at a time and hope theres a next one with a little joy after all the pain and saddness we endure going thru this. divvi
So very, very tough - and tiring - and depressing. I am there but mostly angry. The words from a song from "fiddler on the roof" haunt me, "But, Do you love me?" yesi love him and we are nowhere near totally disabled - just totally dependent. I forget to pray but when I do my heart is touched. I know I need to be healthier but I am too soul-weary to get there. I feel a little guilty when I just sit in my car after going by the drugstore. Maybe that's when I should pray. I so wish I knew what is not Alzheimer's that I can get mad at him for. Well, if it was a pet peeve for the last 25 years that I have gotten over long ago - sometimes in order to vent I will say, you've always done that so you can't blame it on Alzheimer's. Truth is, he never blames it on Alzheimer's. I really love this man.
Once, in our support group, someone said that sometimes she wished her loved one would go ahead and die, so this terrible life of being a caregiver would be over. She said that then she felt very guilty for even thinking that. Another caregiver in the group, who had been doing this longer than anybody else I ever knew, said quietly, "You get over feeling guilty". Now, I know that this woman loved her husband, and took absolutely the best care of him that she could. I knew her for years, and I saw her many times with her husband. But she was also human. We all are. And in addition to grieving for our spouses, we grieve for ourselves and the life we used to have, and the person (and couple) that we used to be.
It scared me yesterday when I started researching burnout, and what it does to your body. It's not like we're sacrificing for a few months until our spouses are well again. This goes on year after year, and it only gets worse. That's why some caregivers actually die from doing this. We give too much, for too long. But even caregivers who aren't to the point of burnout yet have the right to ask, "What about MY life?" That's not selfish. It's our own survival instincts kicking in.
Absolutely nothing that we do will change the outcome of this disease for our spouses. But there are many things we can do to change the outcome for ourselves. It's another cruel side of this disease that we do reach a point where it feels like we have to turn our backs on our spouses in order to save ourselves. We aren't really turning our backs. It's just that they are moving farther and farther away, and they are moving faster and faster. One day I realized that unless I changed how I was handling this, and started working on my own health and my own life, this disease was going to kill me too, probably before my husband died of it. It still might, but I'm trying very hard to fight my way back to life before that happens. But I had reached a point where I knew if I took one more step, I was never going to be able to come back from it.
Only the people who have been through what we've been through could understand our feelings. In the beginning I couldn't have imagined feelings like this. But then, neither could I have understood how terrible this disease would be.
Sometimes I think I can't do it anymore. Most of the time I am on auto pilot. DH is so demanding. His feet hurt, his hands hurt, his bedroom slippers don't feel good. He is obsessed with bedroom slippers. I even ordered some on the internet. He didn't like them, when can we go shopping. I need to go for respite. He can stay home and complain to someone else. I think I need a break.
We all have such valid reasoning-and know we need to care for ourselves but how many take our own advice??? I know I do not-I keep saying I am going to just take a day to myself,not for appts. or anything nesseary just a day for ME ! Well that has not happened yet and is not likely to because I feel GUILTY even going to the grocery store without him. He is not too bad yet,but just confused and no energy-just an empty look in his eyes.Do others see that when they look into their loved ones eyes-just empty??? Luck and love to all--we need it!!!!!
bak we have discussed many times the 'look' of AD. i think any of us who have lived the disease long enough can see the look in others. i know i can most of the time. strangers you can see the blank empty staring hollowed out eye socket. its a dead giveaway. almost all of our spouses will develop it at some point. dont know why but its a classic mark of AD. divvi
Last Tuesday was my day of admitting this, out loud, for the first time. I was so overwhelmed that day with what we all go through 24/7, that I actually looked up airfares to see where I could afford to run away to! My plan was to just go....tell my dear girls, goodbye, he is yours. That not being pratical, I turned here and read, read and read some more while I cried, cried and cried some more. My sister was my safe haven to whom I finally said "I can't stand it anymore. I want to run away. I am tired of making all the decision, cleaning up poop, and not having the emotional support from the man I married 45 years ago. I just want to run away AND, I feel so guilty about feeling this way." I wanted to know how you could feel that way after 45 years of marriage....the answer ..... by caring for someone that has AD. Bless us all.
Joan, Normally I try not to express myself to people the way I do here because they can't understand what I mean. I don't want to scare them. But I do have one friend that I can unload on a little bit better than other people I know and I think that the expressions of conflicting feeling you mentioned in your blog is why I told her one day when it was really bad..."I just want him to go away" Of course I didn't mean that the way it sounded but everyone here knows what I really meant.
conflicted - I think for those of us that have had a bad marriage, it takes on more meaning. When he was diagnosed my first thoughts were something like "no way will I go thru 25 years waiting for him to die like his dad - ASAP he will go into a facility so I can finally have a life'. I find I battle the hate I thought was gone from his affair years ago. That hate makes it even harder to go on day by day. I want him to go fast - both for him and for me cause he doesn't want to go as long as his dad. If it were me diagnosed, suicide would have been the cure right away. He is not that way - he will let it go its course. Right now this part time job I have is my escape - a brief time to feel alive.
We have been married for 60 years, a good marriage. He first showed signs of dementia almost 20 years ago; first trip to neurologist 1996. My health was deteriorating so I had to give up nine months ago and place him in the care portion of our retirement home. We moved here 3 1/2 years ago because I knew this day would come. Yes, I am private pay also--so no fancy vacations for me.
There is a body over there that I visit every day, but it is not really my husband. I have a long way to go in adjusting to all of this. Maybe eventually I will learn to accept. When you have been together almost all of our adult life it is difficult to change yourself.
We get upset, depressed, discouraged with all that this disease does to our LO and added to that is the unspoken knowledge of our own lost life in this hell as we keep our vows of for better or worse in sickness and in health. It comes home to roost when we read say a FB entry when one of our kids is going on a carefree holiday, or planning something fun and fabulous or we read about the parties and concerts etc...all the while we can ask our LO if they would like to go on a trip and they say no...or get antsy at a movie, or fiddle with the remote so a movie on tv is impossible to watch. I never wish for my dh to die..but I wish I had a magic wand and could make him well.
I guess part of my frustration is knowing all the years we didn't go on trips or do something fabulously fun so we could help the kids through college or the trips were the ones made to see them and the grandkids and we loved to see the kids but $$$ only go so far so we always put ourselves off and now it is too damn late...
Mimi, I understand. We always went to visit his kids or his parents. Never a real vacation for us. Now we will never have a real vacation for us. And all those years we went to see his kids and his parents (along with brother, aunts, uncles). Well only one son came for a few days after DH dx. Not even phone calls from any of his family after all the years of visits. That parts makes me so mad some days. All that time and money and no one seems to care about DH. It is like he does not exists. Why does no one care?
Blue, you added what I didn't...yes the other trips were to see my brother's family and my parents or his too. His parents could not afford to travel and had health problems, but my parents could afford to travel but elected to go see my brother who had his kids not inherited kids like I do. To add to this, I told my dh the other way when he had got off the phone with his " Siamese Twin" ( the other woman so to speak but it is really a man ,in my life...a guy he went to flt school with whom we always went out of our way to see and who hardly ever comes our way..or calls.) this guy told dh that we are welcome to come visit any time...I will be damned if I am going to drive for more than 3 hours to see someone who does not call nor come for a visit himself. What on earth makes him think I enjoy driving through LA and into Orange County? Not gonna do it, he can damn well saddle up and come see his friend if he cares at all. There is more to the story than just that but that is enough for here. And my brother has never in all our adult life come here to see us..you don't need an invitation to see family..just call and if we are home..door is open..but when, after my dad died and we bought a condo ( for my handicapped brother and where I can stay when I travel to their location ) and I hear how great it will be and how much easier it is for ME to travel than for him to organize it for a family of 5 and then the next day learn from one of the kids they are taking a trip ( a long one) to Canada!! well you can see where I am coming from....to hell with the lot of them..Now there is a family crisis in my brother's family with one member really ill with cancer..I still keep in touch and ask how this member is but NO ONE ever calls and asks how dh is doing. I hate these one way streets with family and friends..just hate it and have no use for it. All I tell myself is that one day what goes around comes around.
Why do others not care, you asked? I suppose some do care but don't know what to do or say..others are just plain full of themselves,friends and relatives alike..safe and snug in their own little worlds. Why let something so dreary into their life if they don't have to? And the obligatory question " how's he doing" when we know some of these same people don't really care for an answer in the first place. It is interesting how often others ask how the LO is doing but not how we are doing..this topic has been discussed before and most of us are learning to ask for help when we know we need it so the question or comment is not pointed at that, it is just more generic than that..it is like they think our life can't be that hard..
Just try answering the same question 5 times in less than 10 minutes!
It was like I told you my feelings and you wrote them down. It is a very conflicted life we lead, but good to know others feel the same way. Hugs to you.