Just turning here for a place to express my feelings. It is sooo hard to pretend things are "normal" around my husband. Some days, like today, I just want to cry and sit in the corner of my couch alone. Soo much to mourn. Then I feel guilty for feeling this way.
Anyway, I can't do that. So I came here to vent. Now, I must get up , smile though my heart is breaking, and take him shopping with me.
I remember wanting to pull up the carpet, dig a hole, climb in and cover myself back up. Your feelings are normal. Do not feel guilty for having normal feelings. Vent all you want, it's good for you. Give him hugs and kisses, you cannot do more than love him.
Stay strong Lorrie. You can do it. I know exactly what you're saying and it hurt for me the way nothing had ever hurt before. I'm sorry it hurts so much.
Feeling the same way today - very sad. So sad I don't know what to do with the feeliings. Sometimes I want to scream at the world; sometimes sit and sob; but most times I don't know what I want to do. Except have my old life back, which is impossible.
So if it makes you feel any better Lorrie, you're in good company here.
I had two free hours yesterday when our helper came to watch Jim. I was feeling so sad I thought I'd listen to some music to cheer me up. Step One, put the ipod on shuffle. Then cry to: Help, I Really Need Someone" followed by "Yesterday" and finally "Let it Be." That's what the shuffle gave me.
I think I'm doing somewhat okay until I get by myself for a minute. And then I feel how much I belong with those broken-hearted people in the song. This is a tough job. Not just the work but all the emotional sorrow we bear.
At least I didn't sit and eat Snickers...I had a black decaf iced coffee with almond milk instead. So...yay?
Lorrie, I am feeling the same was today too...very sad..teary eyed and so very much alone. I just feel so empty --a huge whole in my heart. I sincerely hope tomorrow will bring you some sunshine and cheer.
Thank you all for sharing and and supporting me. I am Soo sorry for all of us. There is so much pain in all of our hearts. As I read your responses, I wished we could physically reach out to each other .. You know sit around my fireplace with me now and talk and comfort each other. It's funny I could almost see us now. Oh, those darn miles between us!
WE all feel this. Today I was noticing how I can come into a room and DH doesn't answer when I greet him..he is looking at TV and I know he is not following the story line...I see how he snoozes and he looks like an old man now ..well is is almost 83 but he was always a very young 55 and then 65 and even 75 but not now.....and he gets the sunken in look in his cheeks and the furrowed brow that makes him look like he is thinking about something he can't figure out. More and more is slipping each day..
We all must be affected by the full moon we had. I want to cry but like the rest of you, no privacy.
Last night our son called hb. He talked for a whole 6 minutes - last call was at Christmas. Husband never remembered him calling. In the past he would act like he remembers but this time he did not. He had to look at his call log before he would believe me. Of course, he forgot within minutes. I mentioned it later and he had no memory, so I know it is getting worse. I think he is just not pretending he remembers anymore. Last week he was telling a lady I work with that we sold our house by they airport, bought the motorhome and went on the road. The house was sold in 1979 - we bought the MH in 2003. Good to know how his far back his memories are getting confused, but sad.
Lorrie, Yes it would be nice if we could all gather around your fireplace for comfort. Hope you have an awfully large fireplace because there are so many of us in this sad situation travelling down this lonely journey called alzheimers.
Mimi, I understand exactly how you aren't noticed. So sad...they get so focused on one thing and one thing only. I suppose their brain can only take in one bit of infomation at a time. Mine sits and scrolls though the t-v- for hours. Yesterday he sat for 8 hours straight focused on his crossword puzzle. My heart goes out to you. Yes, I can see mine slipping more and more each day too. Take care
Charlotte, It's so sad that our adult "children" don't take more interest in their parents. One day they will regret it and it will be too late. My husband has 4 kids by a previous marriage and only 1 called to wish him a "happy birthday". My heart goes out to you to see your son behave this way.
lulliebird - I am actually fine with them out of my life. They only bring stress to it. He has not spoken to me since over 2 years ago after he took off for his 'dream job' which he never found. I called him a deadbeat dad because he is not supporting his children. He has a 14 year old daughter whose mom keeps her from all of us and he has not sent $1 in support over the years. He feels since he can't see her, then he won't pay and there is not court support.
This was his reply when I sent him an email thanking him for calling his dad even though he doesn't remember: "I know he doesn't remember, but I will... I don't want to have regrets after it's too late about either of you."'
He did call me at Christmas time when I was at work and left a message wishing me a Merry Christmas but I have no desire to talk to him. He is finally working at McDonald's -lowered himself to a menial job but is in their manager program. He needs to stop worrying about his dad and me instead get back to where his kids can see him - he is in OK. Noah is 4, has not seen him since he was 2. He does not want to talk to him and we think it has a lot to do with him not remembering what daddy looks like.
Hope everyone is having a better day emotionally. With this disease there are days we just have let ourselves go down a little to be able to pick up and carry on.
Charlotte - I've had to let go of lots of people, including some family. I have enough to do without dealing with outside stress. I'm fortunate that my son is my biggest supporter, cheerleader and rock. He often tells me "Mom, when you arrive in Heaven, Dad will be standing there with a bowl of fruit salad, and he'll say to you....what the heck was all that down there!". Makes me laugh every time, and I get it! Hang in everyone. We're all in this together!
me too lorrie, your songs made me think of song by roberta flack "the first time ever I saw your face" I'm new to your board but have read it for a long time
Hi skates Glad you decided to join our caring group. If you would like to tell us something about you, we are always here to listen. Welcome , but as we say sorry you too are on our journey. But, we are here to help each other.
Charlotte, How very sad for your little grandson not to have his Daddy into his life. Noah, sounds like he has it pretty much figured out in his young years. Kids are so preceptive! So sad for him and of course this has to break any grandma's heart too. Hope your son grows up before he realizes it may be too late. Lifes a short journey and we all make regrets, but when it comes to family how much better off our culture would be if we would stick together though the thick and thin and not be so selfish chasing rainbows and wants "things" only for our lustful pleasures.
I guess I am so numb and go through the motions each day of caring for my hubby - he's 68 and probably around Stage 5-6. I believe when I have worked through the anger stage and the frustration I might feel sad - right now I just feel trapped and discouraged that all the things we had planned to do in retirement will never happen.
George's Caregiver I find my emotional state is constantly changing. Yesterday, I was so sad and tears just kept flowing whenever I had a private moment and some moments when DH did not notice.
Today, I woke up and my whole body hurts. I just feel so worn out and kind of like I want to stay in bed all day. Fat chance of that. But, funny no tears today.
This journey is a roller coaster of emotions. We all feel then at our own time and in our own way.
George's Caregiver, I hear a sis'ta! I am so anger and frustrated with my husband. All the deceit, lies, cheating, and money he has squandered very cleverly only to be recently discovered.. One day I am anger, the next frustrated, discouraged and most of all trapped in a cage. But I guess the very most painful thing as a caretaker is the loneliness...the noise of the silence is deafening.
thank you Lorrie for your kind welcome you are all so kind to one another it just encouraged me to post today for the first time, my emotions go from so sad it physically hurts to it is what it is and feeling more together, like you said an emotional roller coaster. Our 54th wedding anniversary is this month probably not helping.
Skates, so sorry that you have to be here and yet so glad to have you. It's an emotional roller coaster for sure - but there's a lot of help, comfort and good fellowship here.
What has finally helped me a little....maybe a lot....was seeing the neurologist about migraines. Remember when I had the optical migraines last Sept? They were brought on by stress and anxiety. My MD had me try Lexapro..did not work...horrible...later when I could get in, say the neurologist my DH is seen by and thank goodness for him. It really helped that he knew us and our situation before I needed his help. He had me try Zoloft. Unlike Lexapro, going on Zoloft was pretty easy with not much in the area of side effects..a little here and there..I had a sort of blog here for a bit. It is helping me cope so much better. I do think I have a wall around me..I don't do the crying thing much, now and then a tear.. It is just pitiful to see this strong man wither before my eyes. We don't talk about anything of consequence anymore...nothing. He watches TV all day. Won't go out in the yard and walk with me even a little on a warm sunny day. And the girls..well they love their dad that is for sure. He is a hero to them. He was Mr Mom for a few years after he divorced their unfit mother...and she was.....they do not live close at all. Phone calls or skype come along but not as often as I wish they would call yet he is very understanding about it all. I guess that part of the apathy is good rather than having him rant about being ignored. But as someone said earlier, one day it will dawn on them that they could have spent more time sending notes or cards to him, calls even short ones....when he no longer knows who they are that is going to be a real knife to their hearts. His sister, who also has ALZ does not know her brothers nor her own kids now until she is reminded... It never gets better, only worse. But meds and therapy sure help with those really hard days...At least I am feeling more productive now, less frustrated and stuck. This disease sucks..pardon my German...( the French always get that bad rap ; ) )
It's another day in A.D. land and surprisingly I have more tenderness and patience today. I can actually feel almost fond of Jim again. So maybe sitting and crying helps in some way. It doesn't feel like it when I' sobbing, it feels like I'm pathetic and weak just at the time I need to have fortitude and endurance and strength. But I guess something deep inside knows when the pressure has to be released even a little or the whole pot's going to blow.
Maybe the reason I'm a little cheered up is that I got our stupid taxes off to the accountant. I am truly shocked at how much we paid in insurance premiums, deductibles, co-pays, etc. At least a third of our income. It will be much better when he finally qualifies for Medicare, but at that point, I will be without insurance. Okay that's OT so I'll wait for another thread about health care costs.
I too am having a sad day. Just got back from the 2 day camping trip, it was nice lots of swimming and even some good giggles with a friend that showed up for the second night. When I drove the long drive home today I could feel a sadness descending. Yes I got home to my cute clean house, lovely yard, and precious cat friends. But of course, I just ache with missing him. Shall go up to see him tomorrow.
Not sure what to post, because I am not sure what I am feeling. Alone, scared, angry, sad, so many emotions all at the same time. My husband was only diagnosed a short few months ago, and already my world is upside down. Mostly I feel alone, a few of our family and friends have tried to be comforting, but sad to say most don't want to hear about it, its like it makes them uncomfortable. I bring up things that are changing in him , and in our life and suddenly they need to hang up. Does this get better or will the isolation only get worse. You all seem to be handling this better then me :(. Does the fear of the future ever get better ?
welcome mshelley1. most of us have been in the emotional state of early diagnosis and the everchanging ups/downs of saddness. and yes the majority of our friends and even family seem to not want to get involved in the throws of AD. and do feel uncomfortable which is easily picked up by us and makes us feel the same. isolation will be like you make it i guess. it is important to remake new friends, maybe in support groups, or friends who have lost a loved one as well and try to forge ahead with a new set of priorities. our own have been wiped off the slate so to speak as our hopes and dreams of what we had planned for is now nil. new plans are in place and the first order of the day is to get thru this disease ourselves, in tact, so we can try to live in the 'after' as well as we can. many of the widows/widowers here are prime examples of how it is possible to come thru with a new vibrancy for life and a desire for a renewed type of living. so yes the future will not be the same as planned but can be as good as we want it to be. but we must be pro active to get to that point. it will be a very difficult long road ahead and your patience and love will be tested over and over. but in the end, we see like linda mc* says and probably like i will be, would take them back poop and all just to have more time. if you have time so a search at the top of the page or scroll thru older pages and topics. so much good advice from our caring friends here. divvi welcome skates!!!!
Welcome skates and mshelley1. Yes, this entire journey is an emotional roller coaster never knowing what the next day will bring and how we will handle it. The early stages of the disease or diagnosis seem to be the most stressful because we are witness to the changes in our spouses and are afraid of what the future will bring. There were times when my husband seemed perfectly normal and then some strange behavior, event, etc would occur and I just couldn't believe it. And yes, you will probably find yourself alone on this journey unless you cultivate new relationships. All of our friends have disappeared and only my sister (no one in his family) helps out.
This wonderful website will provide invaluable advice, insights and comfort. Visit often.
So sorry that you have joined us in this journey, but glad that you have a great support website where people can truly idenify with your changelles. I am fairly new to this site and feel blessed to have stumpled on this site. It's a place where you can express your feelings without judgement, a place where you can gain information and great support.
As LFL so accurately states "there are times when my husband seemed perfectly normal.." We never know what the day or hour begins because this disease always can change hour to hour or minute by minute without warning.
I'm so glad you've both decided to post :) I lurked for at least four months before I said anything and after two years visiting the site I still post with a few jitters. Those further along in the journey have so much more experience that I'm not sure I have anything to offer.
But then I think that those of us who are new to the diagnosis, or have a spouse still in their 50's also need to share. There are probably a lot of people desperate to read anything to help them through the devastating early years. Knowing that we are not alone can be so helpful.
And mshelley1, for me, I've stopped looking at the future. I read about that all the time here and everywhere else. But knowing what might be coming doesn't help me today. So I took care of the legal and financial stuff best I could and then daily remind myself that I don't really know the future (I could get hit by a bus, win the lottery, aliens could invade, etc. etc.) and I've got my heart busy dealing with today's sorrow--tomorrow will just have to wait. It's denial, yes, but the kind that gets me through.
Thank you all for your thoughts and comments, still scared, but don't feel quite so alone. Its hard not to be able to vocalize what I am feeling these days. My husband is fine somedays, and others seems to be in total denial about what is ahead of us, but I guess if I were him I would be as well. He is so brilliant, so the future is very scary, but sometimes he doesn't seem to have a clue where we're headed and that is probably for the best. Bunny I think your right, I have taken care of what I can take of, and now I think I can only deal one day or so at a time and still remain sane. Has anyone here tried to downsize there home and moved, has it effected there spouse negatively ? sorry is this a topic for somewhere else ? Thank you all for being here and listening.
I'm joining in this discussion because I've been feeling extremely sad as well. I seem to be having a hard time coping but it isn't only because of my husband, although he's a big part of it. There have been other things I've had to deal with, tragic things, but it seems my husband has been going into another stage of this disease and its scaring me very much. There are days when he can't remember his daughters' names! Or his first grandchild, the light of his life. Everything he does he asks if he's doing it the right way. Is this right?, he asks constantly. I'm really getting scared now. I've been kind of proud about the way I've been handling these past six years or so. But now I feel I'm going into a depression. I'm thinking of seeing a therapist and have talked with a social worker. I hope I'm not jumping the gun, so to speak, but I want to be able to take care of him so ill do whatever I have to do.
Dear Bev, you've been taking care of your husband for a long time now, and it's no wonder you feel the way you do. I strongly support your idea of seeing a therapist. It will help, I am certain. Ask around for who's good (the social worker would know) and get in to see him/her as soon as possible. Wishing you the best.
I wonder if everyone seems to be getting hit with depression/being down right now is due in part to those we lost last month? We had quite a few that passed on. I think when it happens to so many it makes us more aware that one day it will be us. At least that is the conclusion I came to.
that is very possible charlotte, an astute observation. and i also believe the last feb full moon reaked havoc worse than normal. even folks who dont deal with AD around me, are having increased awareness of sadness and dispair. very odd. we never know what outside forces can affect us. but it does. divvi
I strongly suggest you see a therapist and take care of yourself whatever that requires. I don't know how some of you are able to do all you do without that help.
I knew once denial was over, I would not survive without help. After I made sure my husband was seen by the best Dr. I could find ( fortunate to live in N.Y.C. ) I found a therapist for myself. I will continue as long as i need to (probably indefinitely. )I also take Lexapro and have no side effects . We each need to follow our own path and listen to our mind and bodies. Take care.
I am saddened that you are struggling as your DH is approaching the next stage of AD . It would only be a natural response to be depressed as you are seeing your loved one deterriote before your eyes. Just as you are aware and coping with his former stage you are now in new territory with new changelles and worries. Of course you would be depressed realizing you are travelling down a new untravelled path of twists and turns.
As caretakers we become overworked and the responsiblies are overwhelming. So much is expected of us, but we must press on. When we are too weak to stand our friends and family will hopefully be there. Some of us have found our family is not there as we hoped and our friends are disappearing over time however, we do have each other on this site. There isn't a person here who doesn't understand the loneliness, frustration, and fear we encounter. ((hugs)) Lullie
Thank you for making the point about insurance. I am fortunate to have retired from a city career with insurance benefits. I can only imagine how difficult it must be to have concerns about medical costs added to the many other burdens of caregiving. I know different areas of the country provide more services than others. But, something to be considered are the services provided with no charge by local Alzheimer's Groups. We also have some community organizations and hospitals here that offer support groups and counseling.
I agree that this site is a lifesaver for us all. I admire the strength of so many and only hope I will be able to follow their example.
Thank you all for your input. I know I can always count on help from this site. I will be making an appt. tomorrow, even though I'm feeling much better. I've been so patient with him, almost always. I learned so much from th e people here on how to deal with his dementia. But after taking care of his needs for so long, it's time for me to take care of mine. I've hired someone to help me with the housework and I'm going to try to get I out more, even if its just for a walk. The help with the house has been a tremendous stress reliever, but I have some grief feelings to deal with, and I'm going to take care of them.
I recently read that dementia care in this country is "subpar". Wow, I really agree with that--especially when it comes to the care partner. Our lives are trashed by these diseases and we get little attention from the system. For me, building a support system was the answer to coping. Friends, family, contacts within the AD community (Alzheimer's Association)/social workers at Adult Day Program/owner of Home Health Agency); Steve's doctor, all played a part. Getting respite so I could find time to exercise, eating chocolate, shopping, doing things that I always enjoyed (albeit in small doses) was critical to helping me stay strong and deal with the sadness. But it was a struggle, no matter what.
I woke up feeling like doom and heaviness. Not like me. I hope it is just something passing, it feels so terrible like a heavy grey cloud on my head. Doubting myself, and feeling like I am in a cocoon, that all my thoughts and observations on life other than Dado and I are wrong. I do have the person next door, (the visitors leaving soon,) that keeps coming over and laying weird philosophy on me, that life is an illusion and everything is how we perceive it, that it is all up to us.
And over and over advising me to "let go" of Dado, he is not himself, you have to move on. I try to not see them, tell them I need to be alone. But I have known her for over 40 years and it is hard to cut the tie. IS IT JUST ME??? Am I imagining that there is no love coming from there, and IS IT JUST ME- am I retreating from society and becoming unlovable, impossible? Have I been wrong my whole life?
Sometimes I wonder if the continual non love and pushing opinions is starting to affect my soul. I am a believer in Christ's redemption, though, maybe a lousy believer at that as I do not discuss it with this person anymore, they are so anti Christian I can see simple hate whenever I bring it up. And we all know here not to push religion, I just bring it up here as it is so important to what I am feeling.
Oh how I just want someone to love me, for me, accept me, to see that I am doing my best and trying to be a good and decent person.
Thanks for listening. I am just at a turning point, I need to turn, and don't know where.
Oh Coco, I am so sorry about the way you feel right now. I was just telling my sister last week that I feel like the past three years have started messing with my head. I feel like I no longer have normal thoughts or feelings. How can you go through what we do and not feel just a little off.
When I feel like this I ask God to carry me. I just need that extra help to get through the dark days.
I would not give one bit of time to the "friends" who are not helping you right now. They have no clue to what you need or how you are feeling. Be polite, but let what they say go in one ear and out the other.
I love you, Coco, you are an awesome woman and I am proud to call you my friend.
They do not understand your position. It is so easy to say 'let go.' Yeah, and also fly to the moon. Oh, the advice I've given over the years to those I didn't understand. We all do it. You are having a bad day, AD or not, we all have them on occasion. Whatever your beliefs, your soul is yours to cherish and protect in the way that you choose. I know that I'd likely say, 'thank you,' and then go along in my own way. Others would tell them to *&^%$ off. You don't have to tell them anything, just turn to your own values, they will serve you well. How could you not love Dado! Our lives play out in their own way in their own time. Don't let anyone else try to manage that.
thanks friends. yeah I know these days have to happen. I just feel so...lonely...like you said too blue, feeling "off", like what is normal. I too am so proud to be your friend and I really mean it.
Charlotte I must admit those few words you said were what I wanted to hear....lol....I KNOW my response and actions are my own, but the constant beating down, being told how to act, having to constantly one up me all the time, these are actions of non love and jealousy or whatever the hell they are. I am truly, when I feel better, going to cut it off once and for all, I HAVE said, that we are growing apart and do not have the same things in common. I HAVE said, over and over, that having your Mom that you never see in an Alz. facility is just not the same as this.. please stop comparing. I believe it is time to kindly say, I do not feel love or support anymore, it is damaging at this time, and I need to let this friendship go. It is time.
Yes they do not understand and that is the bottom line Bettyhere*...but even more than that, they do not WANT to understand but to just tell me what I am supposed to do and feel.
I do feel good about myself, just sad about personal relationships and the way I handle them, how mean people are. I have done the very BEST that I can with my Dado, with our home and life, my work, and for that I can give myself a great big hug.
Feeling a tad better, I just needed to hear from you guys.
coco, most folks maybe including your neighbors, do not want to be dragged down with all the grief and saddness that accompany us with this disease. or any disease for that matter. nor do they want to hear about our grievances or the losses. its sometimes a self serving one sided affair. unfortunately, many of us have had to deal with people like this. they only want to socialize with us as long as we are the happy gregarious person who laughs and is fun to be around. like most of us were 'before'. they feed off OUR emotions because of their own misery and emotional misfortune , and if our emotions arent up to par for them they feel they need to remind us to get back to that place they like to be around, not where our hearts take us. real friends are genuinely concerned and learn that giving a voice or quiet time to shed some of the burdens we hold, is what friendship means. others cant grasp what its all about. i know you mentioned the spouse had made certain inuendos toward you, and friend that in itself is total disrepect for you as well as your Dado. at some point, after, 'maybe' you may still want to forge a different type of relation with this couple, but as it stands now you are making yourself miserable trying to adjust to their needs and not concentrating on your own. having to hold strong emotionally for the needs of others, is most taxing while we travel this journey with our spouses and ourselves. personally i just dont have the energy or desire to make amends for how i feel. they either like me as is or not. and thats all ok. we tend to find others along the way, that will give our lives support and peace. divvi