Today's blog was quite late being posted because I have been so sad today. I invite you to go to the home page - www.thealzheimerspouse.com and read the blog - Enveloped in Sadness - and post your comments here. Have you felt as the emotions in the blog? How did you get over it? Did you get over it?
Joan, you have left me speechless. This doesn't happen to me often. there is so much I want to say, but just no way to say it. You have always been a "rock." It is sad to see you this way. I have experienced the FOG feeling a few times in my life related to other things. Once, in my early teens when I felt I was all alone in this world and there was no one to love me. Not long before I met my DH. If this feeling back then was even close to what you are feeling now, God be with you. Hugs!
My husband started showing very angry actions for several years before his diagnosis. He had always been a quiet, mild mannered, very polite gentleman. He began using gutter language, criticising me telling me that I am fat and old and that he isn't attracted to me anymore. I knew then that he had lost his mind :-) as he has never spoken to me that way before. He was like that for a year and a half. One day he went to work - he isn't working now - can't. His fist and jaw were clenched like he usually looked - and when he came home that night he was his old sweet self except better. That year and a half was the worst thing I have ever been through - it really took its toll and since it was early in his diagnosis, the "professionals" all suggested therapy and intimated that whatever was going on was my fault. I am not sure if this helped, but he manages his own meds - won't let me do that. He has been under the care of a psychiatrist for severe depression for years. He got mixed up with his depression meds - Lexapro and was taking a double dose for about three months. When we all realized that, he was as happy as he could be and didn't want to stop taking the extra. They put him on Namenda and so far, he continues to be sweet. He is very loud, hollers at the TV and makes ugly remarks at the news and to strangers, but right now I am golden. I am pretty sure this won't last, but I sure am grateful for it. I felt so alone, so ugly, so depressed, mourning the loss of our memories and my sweetheart. I could not have gone through it without the help of all of the wonderful support I have received on THIS blog. Hang in there - it hurts to see them upset - but we didn't cause it and we can't make it go away. I found that the best thing I can do is to continue to be the strong person that I have always been and not get into his "funks" with him - that only makes it worse. I used to try to find ways to help him feel better. Now, I just leave him alone until he is ready to come around again. We all love you and aren't upset with you!!!!!!!!!! Take the love you have so freely given to all of us and wrap it around you as a buffer from this hurt that is so awful.
bluedaze, it was kind of hard to find. down quite a ways. Once you find Tuesday, may be just scroll up a litte. It is quite long. Let me know, if you find it.
Joan, Your blog spoke volumes. I am often sad, because cancer & radiation stole from me what could have been. I only had a couple of good years with my husband, after that the cancer, & looking back, I can see the radiation stole from me the man I married after just a few years. But, I also see so much good in life. Why shouldn't any of us be enveloped in sadness from time to time? It is perfectly normal under the circumstances. The loss of a partner who was our equal, so many losses. I always told everyone how lucky I was, because my husband was always in my corner. Now I want to hide in a corner. We hardly exchange words during any given day. You are just experiencing what would be normal under the circumstances. People described me the same way. I still try to put aside my own life & listen, even though the friends' experiences seem trivial compared to what I am going through, I know it is just as tough for them. It is actually therapeutic to be able to make a helpful comment to them. They are used to me being a rock, a light, a beaming star. I have dimmed, but I am still there.
Tomorrow is another day. I hope your business venture is a huge success & your light be shared by many who will be grateful.
Bluedaze, I have found you actually have to google alzheimer's spouse message board, then go on to the blog. It doesn't work hitting the back button. I usually just minimize the site, but then go back & google it to get the most recent blog.
Go to the home page and "refresh" it. If you have Internet Explorer, to the right of the address bar, there is a up/down arrow icon. Click that and it should refresh the page. If that doesn't work, close out of Internet Explorer, and then click onto it again.
This blog really hit home for me. I could hardly drive yesterday for the tears and then overwhelming feeling of sadness that I felt. My husband is not angry at all and somehow that makes it even sadder. I see such a shell of a man that was once so vibrant, hard working, talented, loving, etc. He simply cannot do anything anymore...has difficulty walking, sitting, cannot go anywhere by himelf, can hardly follow me when I try to bring him grocery shopping for a few items,can hardly form words to make himself understood, etc. We have only been in Florida since last September; one of the friends we have made said she wished she had known us "before". I was always happy, looking on the bright side, energetic....now I put on that face as much as I can, but I feel the despair coming through. He talks about the Alzheimer's and how he can't wait until it goes away...I have to turn away from him when he says that. I says that he can't do anything and he doesn't know why I would want someone like him. As awful as it is for me, what can be inside his head...I can't imagine.
I wonder if your DH is actually very mad at the ALZ and just using the driving issue to be mad at instead. I know I would be very mad. Sometimes we take our anger out on something other than what we are really mad about. Just a thought. When I was going through ALZ with DH, I also had such terrible sadness,anger and pain, which then started taking a toll on my health, gastritis, ulcers, rosacea and more. Then I finally decided I had to let go of all emotional feelings, the sadness, the feelings for my husband as my husband, and the feeling that I had to be his caretaker to the extreme of making him happy, comfortable in life even tho it was at the expense of my health my wellbeing. I finally one day faced the fact that I was DONE!! I had to put a wall between us. After that I made sure he ate, was clean, and took his pills if he wanted to. If he asked me questions, I just said I don't know. I was okay then to start looking for NH and let someone else take care of him. But I had to totally, 100% disconnect from him in order to take care of myself. I accepted hospice help, before I could find a nursing home for him GOD was merciful and took him home.
I do understand the enveloping sadness. What a lovely way you have with words. My DH will stop driving very shortly and I am dreading the day. I don't drive at all any more (macular degeneration) and he resents my friends driving him around. Thinks they are very nice women, but, really, he's a man and has ALWAYS taken care of himself. I am dreading that day. You are already in it. Blessings!
Joan, Your writing is so descriptive, and your pain is palpable. I believe we are not the same person we were "before". How could we be? So much of "me" after so many years is part of "us". But "us" is not there anymore. I'm not sure how we separate our agony over losing our spouse, from losing our dreams for the future, from dealing with the long goodbye, from dealing with so many details by ourselves, from dealing with the loss of support, from dealing with our loss of empathy, and so on. We are grieving over some many things at once and yet doing at least twice as much more at the same time. How could our stress not be obvious?
Joan, Your pain and saddness ring out loud and clear. You are in the delicate limbo of when the real devastation of AD hits home, both physically and mentally. and its the crucial time where many 'couples' are forced to part ways, not in the real essence of parting- but the parting of emotional ties and boundaries associated with the oneness of marriage -that unequivicably no longer exists. it is a very sad time indeed. many of us have been where you are now, our loved ones tend to lash out at the one closest, meaning the spouse who is also the caregiver. The hatefulness and avenging nature that can consume the mind in these early times, is also the same one that will eventually turn them into dependent despondent and childlike in nature. You will learn there is no choice except to move in sync with the disease and succumb to its phases and new stages. it seems so blaise to hear it said in these difficult days but its true, 'and this too shall pass". hopefully soon for you both. divvi
I'm not the same person I was three years ago, nor two years ago, nor last year, nor will be tomorrow, nor will I be after he goes. I'm just hoping to hold onto as much of the old me as possible. I don't want to be so cynical, so sad, so watchful of his movements and reactions, or having to look for all he has misplaced, or figure out if he is expressing anger at me or himself or whether it is just his confusion; keeping him alive and safe are my present goals. My life now revolves totally around his needs. I will freely admit that I am in total sympathy with Joan and what she is going through. I was there two years ago. It is H#*@ on Earth. But, we will survive! Joan, you have created our oasis and we are extremely grateful to you! Would you like us to come to Florida with rubber baseball bats? (Nerf ones, of course!)
Joan, You have such a wonderful way with words and describe perfectly how I feel. I'm so sad that some days I can hardly stand it. I can't be positive, I just feel horrible. I know I should looking for the good in every day and be thankful that right now my DH isn't any worse than he is, but I can't. When I see him laying in his recliner a mere shadow of the vibrant man he used to be I just want to cry and scream! I don't cry easily, probably would feel better if I could let it out. No one in the family understands and the whole Alzheimer's mess is almost impossible to explain to people who are not coping with it. This site has been my only support. I've thought about going to a therapist but most of them don't understand either. Thank you Joan for this site, and thanks to all who share their wisdom and experience.Joan, I don't know how you manage to do everything you do, you are such a strong person.I'll pray for your continued strength and hope that tomorrow is a better day for you. As for me, I continue to be sad, sad, sad.
The word I had been using since my Dad's death in March.. is consumed. I was consumed in grief, sadness, at a loss of how to go on. My Dad's death was a huge shock, literally, I went into shock….I was starting to shut down. I lost my Dad , my hero... and now I faced losing my husband as well. 41 years old...... “an orphan” and a 'married widow' … on top of living with my disabilities and constant 24 hour a day pain, it was just too much, and I simply broke. I have no shame in that. In my eyes, weakness is not needing help, but NOT admitting that you do.
It took sheer willpower to get myself out of that "funk" and a trip to a children’s hospital. When I was diagnosed with my disease I was told that it was not fatal, but the pain it wrought would make me wish it was. I was told I could never work again.. I was 31 and it was hard to swallow. My neurologist is in a major hospital that also has a children’s hospital. Whenever it seemed too much and I got to feeling sorry for myself, or I faced another surgery and was nervous, I found myself headed towards the children’s hospital. It is hard to see children so desperately sick, and some terminal. Their cancer ridden bodies and shaved heads, so brave!! Before Lynn got sick, I use to volunteer there. I learned a great deal there. And I try to never forget the lessons learned.
Life is what I decide to make it. Life is sometimes not fair. Bad things happen to good people. I can’t cure Lynn’s Alzheimer’s any more than I could cure those children. But I could make a difference, I did make a difference! I choose now to look on care giving to Lynn in this same light. But whenever I think about how unfair life is, or start to feeling TOO sorry for myself, I still find myself headed towards the children’s hospital…. It puts things in perspective for me.
You have so eloquently defined the sadness that we all feel living with this monstrous disease. Though my husband is 84, you would never have believed it for he was soooo active, creative and had a tremendous sense of humor. Now he is sad, cries frequently, angry at me. It did not happen all at once but started with the constant criticism and only went downhill from there.
I understand all of your emotions of wanting to scream and shout "I am still the same person" just don't look at my sad face, tired body and stretched faith. Now, the blessing is that I can still touch him, talk to him, look at him and hope for good days that he will connect.
Many days, I literally drag myself out of bed and thank God for being able to physically get up and ask him to please give me coping abilities. Some days it works and some days it doesn't and no matter the sadness still remains in my heart and am still grieving for our loss.
Please know that through YOUR efforts with this website, you have given all of us a glimer of hope, camaraderie and understanding.
I felt your pain and sadness this morning as I sat across from my DH as tears rolled down his face. This past month have been hard on both of us. For his safety it was necessary to put in day care five days a week while I am at work. That is taking it's toll on him. Then yesterday they put a locator ID bracelet on him, he is one of five in our county. He doesn't understand any of this as he believes there is nothing wrong with him. I have become the evil one who is doing all this to him. I just wish there was some small area of their mind that I could reason with. It is so frustrating and sad to see him so upset. Sometimes I think AD will be the death of both of us. Hoping for a good day for all of us.
Joan, You are able to describe your sadness wo well. You have a wonderful way with words. After weeks of relative tranquility, I am again experiencing constant criticism so harsh and mean that I have been brought to tears several times this week - for the first time since starting the anti-depressant a few months ago. Usually, by the end of the day he apologizes for being 'grumpy' (!), blames it on physical aches & pains and says we should be kind to each other. Usually the best part of the day is when we snuggle in bed at the end of the day. When the driving issue does come to a head it will not be easy. He already insisted that we change GP when the previous one said that at some point he may have to give up driving. Somewhere, I came across the following which I find helpful: Courage does not always roar. Sometimes it is a quiet voice at the end of the day saying ' I will try again tomorrow'.
Dear precious Joan, my heart hurt for you as I read your blog. I haven't experienced the rage or had to endure the hurtful comments yet but when the doctor told my husband he could still drive but needed to always have someone with him when he was driving, it seemed like a dark cloud hovered over him. He had lost his independence. I kept reminding him he could still drive...just not alone but he said that's not like getting in the car any time he felt like it and going wherever he wanted to. Gradually, though, he has quit driving and just always gets in the passenger side without saying anything. Hopefully time will help in the no-driving thing with your husband.
Thank you again for making this web site possible where we can share our sadness and help each other cope.
How I wish I could be there with you and just {{{{hug}}}} you and never let go. Yes, I feel your pain and your heartache. You put into words what we all feel, have felt, or will feel in the future. Anyone and everyone who lives day in and day out with AD reaches this point at one time or another. I only wish there was some way I could make it so no one ever had to feel what you are feeling now.
My darkest days came a few years ago, as I said before, I am a little further down the path with my husband. The sadness and hurt are still there, but I have worked very hard to replace them with something positive. This has not been easy - but then again life is never easy. Project Lifesaver was my ray of sunshine. Helping others today is what get me up and going each day. If this program wasn't in place I would likely never get out of bed in the morning. Is this the answer for you? Probably not - but it worked for me.
I go to the NH twice everyday to feed my husband lunch and dinner. Is this easy? No, but I do it and somehow smile at the same time. We have no tomorrows - no future - no hugs - nothing together, we haven't had for years. Many days he does not realize or know who I am, but that's OK - because I KNOW who he is, and who we were at one time. It will never again be the same, but if the situation was reversed and I was the one in the NH - I know he would be there day in and day out to do for me what he could.
Am I a ray of sunshine? Sometimes, most times I'm not. Somehow we find the strength and the faith that helps us get through the difficult days. With the help of friends, my support group, my therapist, every day is a challenge and I have learned that it is up to me to make each day all it can be. I do this not only for Ron, but for myself as well.
You have been our rock - someone we could always count on when the the going got tough. Now it is our turn to help you - cry, scream into a pillow, beat on the wall, what ever helps - it is OK, because like the others have said before - we are all here to help you. You have read my e-mails over the past few months and you know, all to well, that my path has not been an easy one - but I have made it this far and I have to continue one day at a time. I am here for you any way, any time you need me to be. E-mail me, call me, day or night - I am as near as your phone or computer.
I wish I could show you how to get through these days, but I can not. I think is is just one of the many bumps in our paths that we must overcome. Growing pains, I guess you could call them. Is there a light at the end of the tunnel, who knows, if there is look at is as being a positive thing - hope that it isn't a train. There is always something worse - but we don't want to think about that. I have been doing this and traveling this path alone for the past 8 years before I ever found you or this web site. I always thought that if something doesn't kill us it will make us stronger. I am a lot older than you are and I have learned that all you need do is look at the beauty of one flower and you know why there is always something worth smiling about. There are a lot of people out in this world that are a lot worse off than we are - fortunately, we just don't realize this. If I had to choose to have not endured the pain and hurt of AD or to have never known Ron's love - I would have to choose the pain and hurt because they are part of who he is - and his love is worth all of this and more to me. It is from him that I draw my strength - a simple smile, a little kiss, or even a word or two makes each day worthwhile.
Please stay in touch, and I will try to do the same.
Even wordy me cannot find the words that will adequately express my thanks to all of you for your support and love. Whatever I give to you, I get back from you tenfold.
I have a fantastic face-to-face support group and two wonderful social workers, as you all know, but even with their support, I could not have gotten through this year without all of you.
Ruth's work with Project Lifesaver keeps her going, as does my work on this website. It fulfills so many of my needs - creative, intellectual, educational, and of course, lifesaving support.
Thank you to everyone.
Friday's Blog will be about today's (Thursday) surprise trip to the psychiatrist.
Joan - some grief seems unbearable and as if there is nothing you can do to recover. My grandson died in an auto accident a month before he was 6. I have never experienced being with that kind of extreme grief - it seemed as if my son and daughter in law could barely breathe. That was 6 years ago and even though the pain never goes away time has a way of helping out. It's hard to see when you are enveloped with it, but most of us do survive. You have been such a gift to all of us - I really can't imagine being without this site and the friends here. We are there for you as much as we can be - just as we know you are for us. Love to you.
Joan, I read your blog, and it could have been me writing it. (I'm not quite as eloquent, however). The otehr day I called an old friend, and we had a lovely conversation until she asked how Dick is, and I broke down. I couldn't believe it, because i thought I was finished crying, but obviously that sadness is always with us, married widows, what a discriptive name. Thanks Joan, for this site.
Joan-we know how we feel. Nothing to look forward to. Uncertainty. Having to do everything by ourselves. No one to share life's pleasures. Anger at how life turned out. I can't begin to imagine what it must be like to be the victim. AD is everyone's worst nightmare. Sid must feel so helpless and valueless. I guess I was fortunate. I put up with incredible rages-but never at me. Bill never had an inkling of his disease. It just moved in and took over. We are still in shock that is progressed so quickly. My heart goes out to you as you must face Sid each day and cope with the heartache.