This has probably been addressed in another thread somewhere, but I just need to say this to someone & I thank you for listening. I miss being able to tell my DH things we are doing later today, tomorrow, next week, because when I do he is constantly asking about when we are going here or there, or is it time yet? I miss not being able to leave the house by myself, because I always have to take him with me. I miss being able to go to bed when I want, because he expects me to go to bed at the same time as he does, & to avoid an argument I usually go. I miss independence, but I'm sure he would too if he realized how dependent he is on me. Thanks for listening.
Elaine I would suggest you look into getting someone to give you a break. You need to take care of yourself, so that you can take care of him, once you get a recharge.
Some things that I miss really hit hard and at odd times. Today, DH was with an aide that comes in twice a week. I was in a book store and there was a man browsing..DH always loved to read and would spend a long time in book stores, libraries, etc. Then when I stopped at the grocers, there was a man with a cart full of groceries, and I remember whem he would make a run to the store to pick up a few things. Today was a bad day for me. I really want to be able to share my thoughts with him but I'm so thankful I can write them here and know that everyone understands...
Elaine, I can relate to the same things. AND a granddaughter or daughter will come over when I have a meeting or appointment of one kind or another, but I hate to bother them even tho' they say it's okay, any time. Today hb & I were at the grocery store; hb picked up ice cream, 2 candy bars and a pkg of trail mix (and I tho't he was just an aisle ahead of me) and went through the checkout lane. Then, of course, had no $ to pay. Fortunately, they know us well, and cashier asked him to wait for me to finish shopping; so he "visited" w/everyone while he waited. When I noticed where he was, my shopping ended. AND as I was checking out, our daughter and grandson were coming in. I should have checked w/her before we came into town:( I miss grocery shopping by myself, and think I'll leave hb w/daughter on next shopping trip. It's the seemingly little things that frustrate me most. Don't know how I'll handle things when we reach the point many of you are at now.
I go to the grocery store or gas station or hardware store alone just for some alone time. Not a great get away but a get away.
I miss a normal life...where we go see the kids or they come here, or we go to Italy, or movie or just anything...
I keep wondering what are we supposed to be learning from this terrible existence? How to live alone? How to manage without help? How to live with breaking hearts?
I also miss the spontenaity(bad spelling but you know what I mean) that he used to love. Going to a movie, spur of the moment or out of town for the weekend or a festival. We don't even rent a movie anymore. I thought the other day that my world is "shrinking". He does better if everything is the same.....same breakfast,same restaurants,down to 2 now,do things at the same time...routine keeps him calmer. I talked to my sister the other day and she was telling me about a mini vacation they were planning and then later in Sept. she is going to Destin with a girlfriend.When I hung up, I thought, life is passing me by. I am still trying to figure out how to adjust to all of this. I realized the other day that I have more AD sites in my favorites list then anything else. Thanks, Joan, for providing us this safe haven.
"more AD sites in my favorites list than anything else".....Yes, andy, me too. My DH also does better when everything is routine. We had a birthday party here yesterday and people were here from 11:30 AM until almost 11:00 PM and he was so confused when everybody left. He likes company but just one or two at a time. I love parties. I had a great time but it wasn't worth having him so confused later. Hope he's better this morning but we're expecting more out-of-town company tomorrow. It's keeping me sane but making him worse. <sigh>
Know what you mean, Dazed. DH is the same way. I love to have people over but even though it helps me - then I have to deal with him later - so not sure it's worth it. Good luck with your company tomorrow!
I miss my husband being able to show normal emotions. We took my son to the airport last night for his flight to Korea. He will be gone a year and my husband really had not idea what was going on. He hugged my son goodbye and when we got in the car I asked him if he knew where Nick was going. He said nowhere and when I told him again that we wouldn't see him till next year all he said was okay.
What a diverse group we are. One man's trash, another man's treasure etc. Zibby mentions missing going grocery shopping by herself and I miss having Charlie go with me. We live in the country and we had to drive 30 miles to the nearest town. We always made it an outing with a bite to eat before or after and enjoyed browsing the shelves for things we knew we wouldn't buy.
I miss that morning cup of coffee and the newspaper--we'd read and discuss current events and all kinds of stuff. Every morning--for sometimes over an hour. I miss that terribly. He hardly talks at all any more. Sad, isn't it.
Oh,Mawzy,I miss my coffee and reading the paper with him more than anything,too. It was always talking over the grandchildren, the weather,the birds etc.It was our TIME to relax before the world got to us.Now he gets up about 2 hrs. after me and while I'm glad for the time alone, I do miss that cup of coffee with him.
for years Lynn and I would get up extra early so we would have time to spend together before work. Often times he took me out to our favorite diner so I wouldn't have to cook. That was so long ago, I almost forgot it.. thank you for bringing those memories back to me :D ♥
We live about an hour from the Cascade foothills. Many years ago (after the kids took off for college) we would get up early on Saturday morning, put a lunch together and head for the hills. We always found a beautiful trailhead and would walk for maybe 2 hours. Then we'd find the 'perfect log' and haave our lunch. We'd feed a few ground squirrels (or maybe a "camp robber) if we were up high enough. It was fall and the leaves were changing and--well, I miss that. The smells of the forest, the sounds of the birds and I miss him. A lot.
I miss the best thing that ever happened to me. She completed me and without her I feel empty. I remember going through rough times in my life and I remember that often I could wake up in the morning and for a moment or two I would be oblivious to whatever the problem was... after a moment it would slip back into my head and I would remember... oh yeah.... that. These days there isn't one second of any day that I am not completely aware of all that is happening and all that I have lost. I wake up totally immersed the horror. I dream about it, I live it, I cannot escape it.
Thunder--You are so right. "...immersed in the horror. I dream it, I live it, I cannot escape it." Yet maybe because my Caregiving came on in stages, or maybe because it's been my job so long, I have claimed some control over how it affects me. The battle we face with Dementia is two fold--what it is doing to our LO and what it is trying to do to us. Already it has stolen my partner--the guy who had my back in any crisis. But I still have his. Right now I am more vulnerable to that theft. Last week, the 31st was our 36th Anniversary. DH was oblivious. I took my 4 hour respite time and made the day a different kind of good one for me. I refuse to fall into a wallow in sadness--it was a good, but different day. Scarier for me is my toe amputation happening on the 20th. His was the strength I pulled into me to deliver our Daughter, and he was the one standing beside me when we had to wait outside the room when her broken arm was set (she was 9). We always handled the rough stuff together. That support is gone. I have to do this on my own--and it isn't just a simple thing this time. I have to do all the big stuff alone now and I don't like it at all. BUT, I will do it. I can do it. Because of what we had, I am strong enough to get through it and survive--for both of us.
Good for you, carosi. You are -- as always -- an inspiration.
I'm waiting for my ride to go pick up a new car today. If feels crazy to be doing this alone, while dh is still in bed. I explained to him, and he showed a spark of interest. I am glad to still have him with me as a physical companion, even if that's all it is.
I miss the life we once had, I miss the things we can no longer do ... but yet I am also very thankful for the quality of life we still have now and the things we still can do now. I know each day, each week, each month from now there will be more to miss, so each day we just try to enjoy as much as we can together. Each evening we cuddle together to watch TV for 4 hours. Half the time we watch the same shows over and over because my wife doesn't remember ever seeing them. And half the time, my wife can no longer follow the plot of the shows we're wathcing. But ya know what? That doesn't matter to me. I'm just thankful that we can just be together and hug and hold hands because I know that this time together at home will not last forever either.
I have been coming back to this site for months before finally joining. I was lost, not knowing where to turn or where to find people who would understand what I am going through. My first visit, I left depressed. I felt like what will come for me in the future is too painful to deal with. Now I am a little better in terms with trying to face each day as it comes. What I miss is the sharing. Not just in the daily routines of our lives, but in the emotional and psychological support that we gave each other. We shared in decisions and plans we made. That is all gone. When my DW could no longer work, I said that's ok, I will become the sole breadwinner. When she could no longer drive, I said "That's ok, I will be the transportation provider". When she no longer could cook, clean, work the microwave, ...... That's ok, I will do all of them. But what I miss the most is sharing our relationship. The 50-50 give and take. Now it is all 100-0. I am not complaining, I am fortunate that she is still with me physically and while she knows who I am and our close family, she is more child-like than adult. I give her all my love and support and will until the end. But I am increasingly finding out that when you give all the time with little in return, it can be a very lonely existance. I am not the type of person who enjoys being alone and frankly, the prospects of that happening to me scares me to no end.
Thanks, for listening and I thank God that this forum exists.
Welcome to my website. I started this website in 2007 because I couldn't find anyone who would talk about how I felt - I thought I was the only one feeling the way I did about what Alzheimer's Disease was doing to my marriage. I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. This site is now a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience".
If it applies to you and your spouse, there are 4 sections for EOAD (early onset AD- now called YOUNG onset)members - two of which focus on the young teens whose parents have EOAD There is a great section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. You can go to the top of this page, click on "search", and type in EOAD, making sure the "topic" circle is filled in. All of the EOAD discussions will come up - there are about a dozen of them.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
I am going to put your post in the "sticky" at the top of the page - Welcome New Members - so others can find you and welcome you.
welcome Cheval. many of us lurked and just read prior to joining in the posting. its an overwhelming topic to discuss what we deal with early mid and final stages. some of the newer ones I can imagine the shell shock of reading what someone like me wrote about incontinence when first joining. or someone else who had violence and aggressions to deal with. its good to see you took the plunge and will now post your concerns and feelings here among those who truly understand how one feels when its a spouse. divvi
Thank you all so much for the warm welcome. It is almost like coming home. Divvi, you won't have to worry about me being shell shocked, that happened when we had to face the diagnosis. She is well into the middle stage right now. The hard part for me is that the physical person is there, but her personality is so different from the person I fell in love with. I miss the stimulating conversations, the sharing of humor and getting advice about my crazy ideas. Even though she is here, I have never felt so alone. But now I have you all to talk with. Thank you.o
Welcome, Cheval! To update my post on this topic from 9/8/10, my wife is now on a waiting list for a bed at an Assisted Living Facility, so I hear you loud and clear about your feelings of loneliness, and my feelings of loneliness are about to increase dramatically when that placement occurs sometime in the next few months. But, it is what it is. You will find this site extremely helpful as you continue on this journey because, as you are already aware, there are others who come to this site feeling exactly what you're feeling. Each of us are experiencing a somewhat different journey, but as I like to say, we are all swimming in Lake Alzheimer's ... just paddling in different boats trying to stay afloat. Whatever you may post in the future, know that we all 'get it' even if our individual experiences are somewhat different. Hang in there!
Welcome Cheval. I was struck when I read your post - how lucky your wife is to have you. Then I thought, how lucky all our spouses are to have partners who love them and are committed to stay until the end. Who will be there for us....? A scary thought.
I'm feeling a little low today. We had an appointment with the specialist today. He's not sure if DH even has Alzheimer's now, he will do more testing in the fall. sigh. The doctor seemed surprised that I was not thrilled with the idea that DH might live a lot longer if in fact he doesn't have Alzheimer's. I feel like such a bad wife because at that moment my wishes would be 1. cure him, 2. failing that, have this end soon. The prospect of perhaps another 10 years living with the stranger who looks like my husband is not actually good news. But there are not many places you can say that out loud.
I miss so much. I miss being able to just have a simple conversation, I miss him caring, I miss my partner. He's getting weirder in public, staring at strangers, commenting out loud about things that would be better kept quiet. And the constant repeating, repeating, repeating....it takes so much of my energy to stay patient and to think of everything for two.
ring, you are not alone in your feelings. My DW at the neuropsych testing showed signs of AD but also showed signs of FTD. she was well advanced at diagnosis that her IQ was about 50. They couldn't even evaluate her on most areas as she couldn't understand the instructions. I cried alone for days afterwards. I think this is harder for the caregiving spouse than it is for the affected spouse. I have gone through the grieving process already the person I married is no longer here. I feel like I have become a parent for a second time. I hover between thinking that I should prepare myself for a life after AD and giving up all together. If my soulmate should succumb to this disease, what else is there for me to live for? Who would want damaged goods anyway? I don't want this disease to claim two victims, but what energy am I going on have left for anyone else after this? I don't know the answer to these questions, I never anticipated i would be faced with this dilemma. I always figured I would be the first to go since the statistics say men die earlier than women. I have the same feelings as you do. I miss the companionship that we had before.n I a, frightened thinking that I may end up alone and lonely. I too miss my old Wife. I miss the great conversations and the common sense she would provide in contrast to my crazy ideas. I hate this disease that robbed me of my partner. But I am happy that I found this forum as I now know I am not alone. You are not either. I know how you feel because I feel it too.
How true. Everyone says that L is doing worse. This includes her family, her doctors and my son's therapist. Yet her MMSE is perfect. Her progress seems slow for FTD and I am wondering how I will react if the MRI in August doesn't show any damage (the last time she had a brain scan was 3-4 years ago). I don't think I can live the rest of my life this way.
Cheval, I have to call you on your "damaged goods" statement. Unless you are talking about some deep down secret and not about regular Alzheimer spouse stuff I don't think any of us should consider ourselves damaged goods. Exhausted survivors maybe but I would hope that our dedication to our spouses for such a long, terrible illness should count as a positive and not a negative.
I do have to admit that I imagine in fantasy sometimes when I'm feeling low that DH has passed on peacefully and I am re-married to someone healthy and vibrant with all the good qualities and love that DH has shown me through our marriage (and since this is my fantasy, my new husband has none of the annoying habits that have bugged me on and off through the years). lol
But the reality for me is that this will probably not end for a long, long time and I do wonder if there will be anything left of me when it's over.
ring, cheval, and paul , I am very touched reading your posts. You are beautiful people.
ring this is an interesting take, your fantasy. Though I know, I really know, I do not want a romantic relationship now or hopefully, maybe never....I did try to picture in my mind who it would be, how would he be? And then I knew, that I just wanted my Dado back.
I seem to be in a "sad desert" this past month or so, with dh being placed and finances ok for now, I have slept, and slept some more, and read, and gardened and even fished. I know I still love him as much as I can, and more, but tears and sadness just seem to on the shelf for now. This from someone who could was over the top stressed, tired, angry, tearful, did I say tired....? Can just having rest make us kind and hopeful again?
I found myself having a few tears as I lay him down for his nap the other day, during my visit. He was really vacant that day, practically drooling, and he is not heavily medicated. The tears felt good for a change, not hopeless even though he is so ill.
I miss him, along with being a great husband, a kind and caring special individual.
edit to note: I am not feeling like this because of the antidepressant, I went off it two weeks ago. feeling good and better for it.
I do believe that having some rest has helped to raise your spirits. Yes, your tears and sadness are on the shelf for now, and having some rest has allowed you to regain some of your former self - kind and hopeful. You do not need to shed tears to show your love for Dado - your love shines through in all of your posts.
“When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold. They believe that when something's suffered damage and has a history it becomes more beautiful.” ~ Barbara Bloom
The process is called kintsukuroi and it has been said that "it is a difficult and intensive process requiring no small amount of skill, but when the broken item is fixed, it is adorned with veins of precious metal and is thus made even more beautiful than it was originally."
This is how I choose to look upon my pain, scars and heartache. I believe the most truly beautiful people in this world are the ones who have suffered great loss. Just like kintsukuroi, it is a painstaking process towards healing, but we will be more beautiful "after".
I have this quote as a screensaver....
Grief changes us The pain sculpts us Into someone who Understands more deeply Hurts more often Appreciates more quickly Cries more easily Hopes more desperately Loves more openly.
Coco, rest has amazing powers, especially when we have been deprived of it for years! I am so glad to hear you are feeling more hopeful ♥
"Cries more easily" I have noticed that when hearing or reading about others pain and losses, it just seems to go straight to my heart and hurts me more than before AD. I truly feel like I do feel their pain. Guess this is all part of the process.
Oh, I guess I should explain myself as to what I meant by "damaged goods" I am a cancer survivor as well. Been six years since Dx and treatment. Never really worried about it being something that would matter since I figured I would only be with my one and only through my entire life. At least that was what I thought six years ago until AD showed up.
I remember hope. It was the first thing I packed when I left the old world. I couldn't afford it anymore. How do we survive these years and do what we must if we don't? I do desperately hope that one day I will feel real hope in my heart again.
I miss her so. I never realized how much I wasn't "me" so much, as that we were us. It was us. 'I' was a hobby on the side.
The pain sculpts us. That is so true. And I agree it does those other things. My real fear is for those that may have been damaged so badly that they can't feel or see any of those things as a positive. That it feels as if there are none.
We need to survive the battles and then we need healing; and we must understand in our hearts that the same events that are and have happened to THEM also happened to US at the same time. Both are damaged together by the single events.
The seriousness with which we view what happens to them must be in balance with the seriousness of understanding that we lived the same damage. The virtual complete absence of that necessary truth is appalling. Current strategy is to keep the spouse going until they can't anymore or until the patient passes and then the spouse drops off the earth.
If society spends money and resources on the doomed patient, then why does it not invest in the rehabilitation (and tax payments) of the other damaged patient this disease creates? Because society has not evolved to such reasoning yet. It will but not for us.
We have to help ourselves. Our spouse gives up their life to be free of this disease. Having struggled to that point with them, we now are left to our own devices in healing ourselves of it's extremely serious and powerful effects on the soul, the mind, and the spirit.
Even grieving, a thing so important, has been altered from what it's meant to do. We so often are relieved for them, for us, or we wish for their quick end without suffering. Think for just one moment what you think of such damage to a person's most fundamental expression of feeling.
Neither society nor we recognize the compounded series of blows to the psyche as clinical damage. That's very sad. The day we took their keys, the day we saw they really couldn't drive saftely, the day they got confused by the phone, the day they forgot who you are, the day they were diagnosed, the first moment you knew something was terribly wrong, the day they had trouble walking, they day they pee'd or pooped themselves. EVERY SINGLE ONE OF THESE EVENTS IS CLINICAL DAMAGE TO THE PSYCHE.
Pile them up over time and then walk away and you know what you get??? Us.
The first step to healing is understanding we so really do need that and that the enemy is how hard inside we've become fighting through all this and if we do not help ourselves now with some tenderness and some kindness to ourselves - no one will.
wonderful post Wolf. I was thinking, just what, is that hopeful "feeling" I get sometimes. It is not hope for a cure, or that things will not fall apart really bad, or that the planet will recover. I think, for myself, it is those glimmers of otherworldliness, loving spirit reaching out, an end to the pain some day and a perfect home for our souls to rest. This was NOT how I felt for those past few years, and never totally.
Maybe it is the sunshine, the smelly warm wafts of flower essences all over our yard, the pure love from those crazy cats. For sure it is the fact of getting a lot of rest. Whatever it is, likely it will not always feel that way, but it sure is nice to know it is there, when for so long I really thought life was over. And yes Wolf, when I get out of myself and look at what HE is going through, it makes me wonder how I can smile, ever.
And though is some way I hate to think that it is really up to me, that no one else can "save me" from life's body slams and false cracks, I know it is true. And I know it is true, that though we make mistakes and irritate each other horribly sometimes, that many people do care, and so many of them are here.
How nice to think of myself as a vase with gold fillings, a kinder and more sensitive person for life's constant challenges. I hope it will be so. That I can and will be ok, though I also agree Wolf, that many cannot do this, and do not recover. It is fearful for me to think of going that route.
.Blue, I am glad to hear this, it means you are winning this battle. You haven't given up, or hardened your heart. You are allowing yourself to feel and experience these raw emotions. To my thinking, that is the key factor to real healing.
Grief isn't for sissy's. There is no right or wrong. There is no one "truth" for all of us. There are no shortcuts.
Without a doubt we do have to want to "feel" better and we have to work our way towards our goal. Like most things that are worthwhile, it takes a lot of work. I guess we each need to decide if we are worth the effort.
I decided I was. I feel zero guilt that Lynn has AD. I didn't cause it. Do I feel great sadness, yes. But not guilt.
It is easy for me to enjoy what I can in life. I do everything I can possibly think of to bring joy to Lynn's life. To give him as much quality and happiness as possible. I have peace that I have, and still am, doing my absolute best. That brings comfort.
I also hold tight to the fact of how very much Lynn has always loved me. He would WANT me to find happiness!! It seems to me it would almost be a dishonor to that love to feel I must be trapped in misery. The remembered love sets me free from those negative thoughts.
We are also over 4 years in placement, a lot of time and A LOT of work to get to where I am now
Oh man Nikki I wish we could hang out!! You would be such a great pal! I can see us laughing hysterically, coming up with ideas for you wee gnome home, singing songs with Lynn and Dado. Then we could go somewhere and pig out.
You have the ability to take feelings from many of us here and poignantly express them in words. It is a gift that I wished I possessed. Thank you, always
Wolf, great post as always. The one thing I disagree with you on is hope. That is the one thing I have always refused to give up. I couldn't have survived as long as I have without it. We are all so different and we each must do what we need to do, what we feel is right for us. This is why I continue to say what may be a profound truth to one person, it could mean diddly squat to another. We all must find our own truths.
I have been dealing with different grief's for a long time. Haven't we all! One loss that was particularly hard for me was the loss of my Dad to suicide. Just like with being the spouse of an Alzheimer's victim, people simply can't understand the unique pain with suicide unless they have lived it. They chose to leave you, and that, takes a lot of strength to survive. For me it was only when I could stop thinking about my pain, and instead think of his, that I could even think clearly and try to work my way through the mountain of conflicting raw emotions.
I share that because in my quest to heal from my Dad's suicide I ran across this quote.
“Man can live about forty days without food, about three days without water, about eight minutes without air, but only for one second without hope”
That just breaks my heart because I know, and it is torture to know, that my Dad lost all hope. Life events, tragedy, our personal pain, cannot help but mold us into the people we become. Perhaps this is why I so desperately hold onto the hope.
Coco, how fantastic that would be! What a grand time we would have ♥ We have often fantasized here about us all living in a lovely gated community. Where we could help each other out with our spouses. But also where we could socialize together. How wonderful that would be! We even joked a few times about going out on platonic dates with some of the gentlemen here. Just to feel "normal".
How I wish we could have Dado and Lynn together, Lynn would surely make him smile! I sing to Lynn every day, he just loves it and it makes me so happy to bring him this small happiness. I bet we would do a lovely job serenading our men :D
But let us get together in Hawaii, as New Hampshire winters are brutal. I would much rather be there :)