Why is it we still feel so alone even when there are people to help us or visit us? I know. It is because we don't have that one person that was committed to us, and us only, someone we knew would always be there for us to share every moment of every day with us even when we were separated due to being at work, etc. We knew they would always be there for that exclusive to us word, hug, or kiss. These things others cannot give us. How are we going to exist without that? I wish I knew the answer.
T.J., it just leaves a big hole in our heart, doesn't it? I know exactly what you mean but I surely don't have the answer. I often feel alone in a crowd, even with friends or relatives. We just aren't "altogether" without the other loved one.
Drop the O.T. , Joe, this is very relevant indeed. In fact it's our main problem. You've put it very well. Our LO is no longer "there" for us. I hear what you're saying and I have no answers for you. Maybe someone wiser.
I think that we feel alone because no one really knows what is going on in our lives. We do not have a sole-mate any more. We are also very heistant in opening up and talking about our feelings. It hurts worse when we "bare our sole." This is why I feel alone in crowds. I have a harder time with family get togethers than with strangers.
I have written on loneliness in many blogs, but I think Mary in Montana hit a bull's eye. No one really knows or understands what is going on with us. No one to share the burden. I am lucky in that I have so many friends in my support group with whom I can share my problems, and they do understand, but most people do not have that.
and let it go at that. But I will add that for me, personally, I feel alone because you people are the only ones on the planet that "get it". It takes too much time and energy to try to explain things to friends and family and since it's not their life they really don't give much of a darn. While they love and care for me, they don't see what I see, they don't feel what I feel, and they don't have to do what I have to do so I cannot expect them to understand. I don't post much of my thoughts or feelings to this site because your kind words really don't make me feel any better about my situation. I know my personal situation is much better than a lot of folks' but that does nothing to ease the resentment and anger that I feel towards this disease.
TJ, my husband served two tours of duty in Vietnam. During the first one, we had an 18 month old, a 3 year old and a 4 1/2 year old that I had to take care of by myself, and worry about whether my husband would make it home alive. I learned that I could cope with the house, children, car, repairs, bills, and live without his presence. When he returned, our love was as strong as ever, yet he had to re-learn family life and fit in with the children and me and cope with what he had lived through.
The second tour, he left me with a 2 month old, 4 year old, 5 1/2 year old and a 7 year old. Believe it or not, it was easier in some ways even with another baby, because I had done it before. However, the worry over whether or not he would make it back the second time was greater. I learned that I am a strong woman. And, during these tours, there were only letters. No e-mail, no chat rooms, no cell phones, no contact except for the letters.
I also learned I preferred my life with my husband and we both appreciated each other so much more after each tour. We had a wonderful partnership marriage. We learned that we are also separate individuals who can survive without each other, but don't want to have to do so. Now, I'm having to take care of the 2 year old in my husband's body. And I'm doing so with affection for that toddler. However, my husband left me (though against his will) a year and a half ago. He is no longer there. I have been mourning him all this time and hope that I am prepared for the last goodbye - whether it is in a couple of months, or a year or two years from now.
We can go on. And we must take very good care of ourselves so that we can take care of them. We must be survivors. That is one of the main reaons we are here. To learn how to survive while having the love and support of our "family" here. And TJ, you are an important member of this family. As are each and every one of us.
I'm thinking that feeling alone is mitigated by the amount of internal and spiritual strength and level of independence we have, which I guess can vary all over the map, depending upon who you are. Some are for the most part dependent (me), and others not so much (many of you). Since I don't have much faith that I will ever be able to 'replace' my soul-mate, I guess it means getting strong and independent (how do you do THAT), or suffer eternal unhappiness. It looks like the handwriting is on the wall, and it's going to be tough for all of us in varying degrees.
TJ, my spiritual strength is what I have had to count on my whole life. It has sustained me. My independence was built by circumstances, as I stated above. We are never given more than we can bare. I truly believe that. However, I think I'm reaching my breaking point!
I have a "Mother Teresa" quote taped to my computer. "I know God will not give me anything I can't handle. I just wish that He didn't trust me so much."
Here is another one, "Hope is the ability to see a path to the future." Dr. Jerome Groopman author of The Anatomy of Hope.
You ought to see all the stuff I have taped to my desk and computer.
Yup! When I read them, it keeps my day perked up. Another one is Desiderata. I like the part that says "Avoid loud and aggressive persons, they are vexations to the spirt."
Mary, yours is an extraordinary story, and I admire your doing all that you did. I doubt you are at your breaking point, not with your faith. I trust in God, that whatever He hands me, I'll do my utmost to handle, but I guess I'm humble enough to not expect much good stuff. I hope I'm surprised to see what comes my way, but if not, so be it.
This isn't meant to veer the discussion off topic, but I think it is good to remember the sacrifices made by the families of all those who serve in the armed forces. Thanks to you Mary, DH & your family for your service.
This is absolutely in no way shape, or form, meant as a comment against men. I love men, so please don't anyone take it negatively. But I was just wondering if women seem to be able to handle being alone better than men. Of course we are devastated and grief stricken when our spouse dies, but from what I have read on these boards, the women seem to gain strength and do okay alone. Not that they don't enjoy male companionship, but don't seem to be looking for another soulmate. I don't know. I could be way off base here. If anyone agrees with me, please explain why. If anyone disagrees, please explain why. I'm very curious.
I highly recommend reading Letty Cottin Pogrebin's wonderful book, Among Friends, in all your free time. LOL She talks about the difference in men's and women's friendships. Men tend to be friends by DOING things together, women tend to be friends by SHARING FEELINGS. Women can get their intimacy needs met by talking to their female friends, but because men are trained not to show weakness and not to share feelings, they often can do that only with their wife/significant other. (Increasingly, younger men -- high school and college age, say that their "best friend" is female.) If you are only able to share feelings with a woman, and that woman is no longer able to understand/reciprocate, then you are indeed alone and have no one with whom to share feelings. If, however, you are a woman and have intimate women friends, you still have someone you can talk to about your feelings. By the way, there have also been studies that have shown that talking honestly (and at length) to a good woman friend is about as effective as psychological counseling, for women suffering from depression.
I am not biased either and certainly adore men.. but yes, I agree that women handle being alone better than men. I can only go by the relationships I have witnessed. For example, my Grams was widowed young, it took her 12 years to remarry. My MIL was widowed young she never remarried, she was alone for over 30 years. My mom divorced my dad, she is still happily single 22 years later. Yet, my dad remarried within 2 years.
At the grief meetings I go to, many there are widows. All but 1 man is looking for another "love of his life" The women admit they are too emotionally drained to even attempt a relationship. Even in our "no sex" thread, more men then women would seek another relationship.
Maybe it has to do a lot with that? Women are born care givers. They give and give and give, maybe at a certain age, or time in their life, they say enough and want time for them? I know that is the case with my mom. She was married for 25 years and raised 7 children. She loves her "me" time now.
Me? I am 42, I love Lynn with all my heart. I always always will. But I am not sure I want to spend the rest of my life alone. It would have to be a special person, as I will never forget the great love I have had with Lynn. I would want his pictures in my house, I would want to be able to always treasure our love. Not sure another man could handle that?
As for why I feel so lonely... for me it isn't a matter of anyone "getting it" or "not getting it". The love of my life is gone. Though he is still alive, "we" are no longer a we... it is just me. Though I mourn his loss every day, the grieving can not truly begin until God calls him Home. So, I continue to visit him, treasure the time we do still have together.. but there is always that knot of pure fear in my stomach, the tears that I swallow.. he is here, yet he is gone. I can imagine nothing more lonely.
A long time ago one of our guys posted that just we gals have to learn "guy" things so do they have to learn "gal" things. Most of us have been home makers in our time. We feel comfortable being in our homes. My feeling is that women are more likely to share feelings-both good and bad. We seem to share a sisterhood and are comfortable crying on each other's shoulders. Expressing our weaknesses and vulnerability doesn't lower our self image. My personal life long career does not define me as a person. Without it I am still me. Living in a 55+ community I see how many retired men are at odds with themselves. Without their careers they seem to have lost some of their identity. Perhaps as women remain in the comfort of their nest that they created they manage better. That said I would still rather be with my husband.
Yes, Joan and maybe we should start calling Shanteuse "Doc"! I think you are right on. And, to take it a step further, I don't think most men really open up much about their feelings to their wives, they just enjoy a comfort zone with them without thinking about it.
My female friends are my life right now. I have a group I see monthly some of whom have been my dear friends for over 30 years. Then I have a large circle in my neighborhood that get together monthly for an outing and another overlapping group that play Bunco monthly. Then, a smaller overlapping group get together a couple of times a month while their hubbies play poker and I tag along (my DH is beyond the playing poker stage).
My friends and I find that our mutual friendship means more and more to each of us as the years go by. Most of them are in happy, healthy marriages and while I find myself sometimes (well to be honest, always) envious of their circumstances, there is none of the "fifth wheel" or awkwardness that I've heard some widows experience.
Honestly I believe it has to do alot with libido. men seem to want to nurture that sexual need into their prime and senior years. dont get me wrong, if you have a wonderful relationship during those years with a spouse thats all well and good. but most women once after menopause sets in, seems to lose a bit more interest in that dept and work on sharing needs with friends and family.- we usually had a full life caring for kids, working, households, etc and in my mind the later years i want for me to do with as i wish and fulfill some of the things i want for myself. if that includes a man ok, but its not a necessity at this point like in would have been in my earlier years. i agree women share feelings and tend to want to share friendships with both sexes but more often with females who have bonds in common. i would see that as a stress free relationship in my mind-doing as i like without answering to anyone but myself for a change! divvi
T-Joe......WHY do we feel so alone? because we've lost our "better half". Because now, we're left alone with all the decision making, "holding the bag" on our own. Because the children are gone and besides that, aren't willing to acknowledge the illness that has taken away our life, much less come to share the burden. Because the house is sodden with silence and grief...and all the bright and pretty, precious "things" are no longer brought out ceremoniously in times of celebration! Because there IS no celebration. Because friends no longer show up or call. Because a rose is no longer a rose, but just another fading bloom. Because a golden fading sunset is only a fiery sign of another day's end. I've noticed so much of what I caught once in the light is lost in the shadows. But, I've been told, "for everything there is a season". And, "This, too, shall pass" (even happiness, I'm assuming). Hope I've not brought you further down, but this is where I am right now on my own path down to acceptance. Real talk today from the doctors about DNR orders, things like that. What ifs. Reality.
Don't think I agree too much with the libido idea. Most women I know well (ages roughly 35-75) haven't lost interest pre or post-menopause and those who are not in an active intimate relationship are not there by choice.
i did say I BELIEVE. not meant to include everyones take on this subject. just my own. divvi most of my friends in the 60-70 are not interested in having relationships anymore. some exceptions.
I also think that women know from the time they marry that odds are that they will eventually be alone. Many of us marry men at least a few years older than we are, and we know that men overall die at a younger age than women do. Maybe we prepare for that by forming close friendships that endure as we age - consciously or unconsciously.
i feel alone because I lost my solemate, there is no one who understood me like him, we would talk about everything and bare our soles to each other, I no longer have anyone to cry or laugh with the way we used to , we knew what each other was going to say before we said it, I hate this thing called Alz.
This topic has really had me thinking...I wonder if some of the "freedom" women express once they settle into widowhood might be because so many females are the "peacekeeper" in the family and/or many were raised to be deferential to men as head of the household, or something along these lines--so that as a side effect of the horrible loss of their spouse they find they like being their own "boss".
Joan- I have to say that women do handle being alone better than men. They can share their feelings with just about any woman (even strangers), and sometimes even with men, and find emotional support that way. Men, or perhaps I should say me, cannot express their innermost thoughts and feelings with either men or women in general. Ever really listen to men talking??? You can be sure they are NOT sharing feelings but talking about sports, cars, women, etc.... Our caveman instincts taught men to build a house, hunt for food, defend their families, and drink beer. Cavewomen learnt to make the house a home, prepare fabuous meals, interact with other cavepeople, and take care of the family. Little changed in 10 billion years. Most men who are alone either have very little interaction with anyone (like a hermit), or they seek female companionship in order to attain a small level of sharing feelings. Men simply do not share feelings. When men marry, they lose their friends, and gain "married friends". They cannot continue to get drunk and plunder, and must become more civilied. For myself, yes I am alone, even when I am surrounded by crowds of people. I can hold a conversation, but the minute I mention how difficult it is t be caring for a eoad patient and an elderly mother, men will usually ask me if I watched last's nite game, and women will expound how they took care of their moms, dads, kids, neighbors, and go on and on about their problems. If I just want to share an evening with a female, or a quiet meal at a restaurant with a female, I am quickly criticized that I m a married man and should not be doing that. Even a simple phone conversation will label me as someone on the prowl... Being alone is far easier for a woman than a man...woman need the emotional and physical support, but that can be achieved with her friends and family. Men have no such resource, and as a consequence, become truly alone. And I think that is why they seek a "replacement" soulmate more often than women.
Thanks for sharing, Phranque. I've always thought it unfair that men were tagged as "on the prowl" when interacting with females. As Shanteuse mentioned happening with some younger folks these days, it is possible for men and women to have relationships that are not sexual.
Part of sharing experiences and intimate feelings with women opens the door to going on the prowl....such intense feelings can turn physical real quick, especially for a man.... In my case, I am a results oriented person, known for my unique ability to get impossible things done. I could accomplish what others thought as impossible, and I had an ease of focusing on my goal and achieving it. I can appear to be totally disorganized, but I know exactly where I am at, and can usually cut thru several layers of "red tape" and get my intended result. But with being a caregiver, I know what the end result will be, and I am trying to do the opposite of what I do well...an avoidance of that result. And since I lost my "career ability", I am totally alone.
It all goes back to how we were raised. Little girls grew up learning to be nurturers, homemakers,etc, and emotions expressed, were expected and encouraged. Little boys grew up to be tough, rough and tumble, and heaven forbid you cry or express soft emotions. A bash on the arm but not a hug. Only with women--mothers, sisters, etc. was it expected and proper to be mild mannered and gentle. Little boys who were "soft" had a hard time. My sister was scandalized when my Dad taught my 4 yr old brother to cuss. He'd missed a step on the way down from the upstairs bedrooms and landed funny hurting (straining)a vulnerable area. He was valiantly trying not to cry. My Dad told him, "When this kind of thing happens and you're really hurt, you just say, "Damn! Damn! Damn!" My sister started sputtering and he turned to her and said, "He needs a way to let his feelings out, that's okay. And it needs to be strong enough to do the job. If I bash my thumb putting up the paneling upstairs, do you think stamping my feet and saying, 'Cuss! Cuss! Cuss!' is going to do the job?" She started grinning and walked away. I think it's great that my Dad did what he did and even greater that my siblings with sons are teaching them more about nurturing--at least in small ways. Hugs are acceptable. Giving Mom or sis a break by doing the dishes is fine.
Unfortunately for us here, especially the guys, we didn't grow up so enlightened. It's a whole 'nother area where we're having to learn. We women have to learn to be tougher--more independent. The men need to learn to express the feelings that are bottled inside. When we manage to do that we actually become stronger because we can help each other better. We can teach each other what we need to bone up on.
Not all women have the outlet of other female friends. I don't and never have since getting married 38 years ago. In fact my best friend in high school was male, but I learned early in life the danger of sharing your feelings, fears or pain.
I have only found a counselor I had for a year to share with, and when I was training to be a lay counselor, there were a couple others in training I could share, but only on the surface. In the mid 90s when I was deep in depression, I was on an online depression support group and that was the last time I was able to share 'me' and feel safe and that others cared. I have learned to always be like a counselor - ask questions and get the other person to talk.
I come from a family of 7. At the reunion this last weekend was the first time a sibling really showed concern for me and that was my younger sister. Art was facing the reality of his future, which was affecting me and she showed compassion for the first time. She did say though what I have heard all my life - you are strong and will make it through this. I will have the support from my sister - as long as she owns her home here we will have a place to park. But the emotional support will not be there from my siblings nor anyone else. It will be an emotionally lonely journey for both of us.
Frank, thanks for sharing, that all sounds right on.
I used to feel sorry for my husband because he had no friends to really talk to. On evenings when the guys would play cards and the girls get together in a different room to talk intimately, he would always try to eavesdrop and wanted to know on the way home what the girls were saying! Much more interesting.
Charlotte, I agree that having good female friends is something that not every woman is lucky enough to have. In my first years in Holland I had none and, looking back, I see that as a dark period in my life, in spite of the fact that I was happily married and had two little boys. (Well the two little boys to take care of may have been part of the problem, too.) Since then I have been very lucky to have found good friends: I don't think I'm good at it, just lucky. My best friend is a psychotherapist and during our weekly swim she (very tactfully and kindly) always seems to be giving me a private session! I love her for it. I've found that having the ALZ to talk about makes it easier to confide in female friends. Many of my "old" friends and acquaintances have moved in closer when they found I was willing and even hungry to talk about it.
So many good points here and we all can relate to that lonely feel. You know years ago so many of our friends hitailed it the other way like he had a plaque so therefore we became more the "us"than ever before and when the "us" is not there anymore, you are alone!
Phranque, you put it very well. Men are basically lthe financial provider and woman are the family provider. Conversation is usually mutual but with AD it just dissappears. As you say, my conversations used to be sports, politics, religion, and sex. Woman are much more prone to talk about family and loveing situations. They cry in movies and the men laugh. Right now, I woulod talk to Carol on anything possible. I try the weather, the cats, pretty pictures, but you know the answer. Nothing worthwhile. It is really like talking to myself, which I catch my self doing more often. Carol and I are both extroverts and she still talks incessalently but I can't understand 95% of what whe is saying. I look at old family pictures and all I see when I look at Carol is what she is today. I have the caregivers dimentia and do not remember the personal parts of all our good times. I am truly lonesome. I do not really have any male or female friends. just acquantinesses. I crave conversation ande lwhen given the opportunity, I usually talk too much but my hearing is so bad that I have trouble hearing the other foolks. I have to keep saying "what". It reminds me of an old saying that my father used to say.--"You are intoxicated by the exuberance of your verbodsity" I used to be pretty verbose. Now I just crave the opportunity. My kids try to help but they are so busy with our 6 grandkids, 12-16. That is a lfull time job but at least they are in our town.
I must say that my religion is very important in my life. My story for Joan is on "Caregivers are Blessed" and I am having fun trying to give my thoughts. But I don't know how I could exist if I were not a Christian. But enough of that here.
I can no longer have sex but we do still cuddle some and kiss often. That sure helps but I have no desire to extend any of my female relationships. I don't know if I ever will. I can't see me finding another Carol. Even the one I have now. She is my better half and that is such a true statement. I miss her so.
Billeld....You also put it very well....Your situation is identical to mine....yep, real friends have disappeared pretty quickly, and even family manages to exclude us on "fun" events. And I think my hearing is declining too because I say what much too often..either that or people are starting to mumble more......but at least message boards don't have to be heard, so it is ok and you don't have to say WHAT??.. and I too am a Christian, and His strength is my strength....I will not be given more than I can handle....
You guys need to TAKE CARE OF YOURSELVES and get your hearing checked. The new digital hearing aids are MUCH better and do not have the problems the old ones had. It is going to improve the quality of YOUR life if you can have an improvement in your ability to converse with others when you are with them.
I had a long conversation with my husband's ENT re: the audiologist's tests. I have not replaced his little digital hearing aids since the second pair was lost or thrown away or hidden..???? They cost almost $5500 per pair.
I asked him, honestly, if it mattered with a Stage 6+ AD patient. He said his father in law had AD, and he believed it did. He is recommending a larger set of aids, that are not tiny andinvisable in the ear( or in the nostril in my DH's case!!) He is recommending a pair of digital aids, that are larger, and they have a little cord that connects to the hearing aids, goes around the back of the neck (like the cord that holds reading glasses around your neck)...and it clips on the back of his shirt. If he takes them out of his ears, they will still be connected to his shirt. These cost about $900. I'm going to try this. He said it is important for my DH to be able to hear TV, conversation, and other sounds more clearly instead of leaving him in a world of mumbling and silence. I guess he is right and I'm willing to give it a try. He said there is a 30 day guarantee, and if he doesn't like these or it doesn't seem to help, the cost is 100% refundable. mmmmm. What have the rest of you done with your spouses who do not hear well?
We yell a lot....He got new hearing aides about a year ago and still cannot hear. Sometimes I think they can't process what you are saying. My hearing is not as good as it ought to be but saying "what" is a lot cheaper than those dang hearing aides. Mumble, mumble, mumble