I went to a mothers day gathering yesterday . It was my daughters in-laws. I just turned 60 and I have been married for 35 years. My husband has been in a nursing home for 9 months. He was diagnosed in 2006 at the age of 64. I go to these gathering because I'm trying to feel better. It makes me feel worse seeing couples together laughing and holding on to each other. I sit there and smile. I would really rather be at home. I go to these things, thinking it would help me get out and be part of a life. But as I said,it makes me feel worse. Everyone is very sweet, they gave me a hug and said it was great that I came. I don't feel like an outcast in that way, just because I have no one by my side like they do. I try to find groups in my area of West Los Angeles that has people my age that I can talk to, but there is no one. I just don't know where to go from here.
Paula, my brother gave me some advice many years ago. The advice was for a different circumstance but fits here. What he told me is to do things for myself but not for others. If you feel obgliated to do something, sort out your feelings and decide if you are doing them for you or for someone else.
I know that sometimes we really have to do something even if we don't want to. These kinds of things just have to be done. Many things do not have to be done.
I hope this makes sense. I have always had a hugh problem attending family get togethers. I always feel so alone at them. Even when DH wanted to go with me and he was having a good time, I always felt so out of place. I have never figured out why I had this reaction. One-on-one with someone is usually good, but groups are hard.
Paula, this is a great place to come. Talk your heart out and you'll get responses! I will be 60 in July. DH is just now 60. I feel lonely but not alone yet...he is still home.
I understand Paula. It is hard getting out in groups that are mainly couples. However, your other choice is "staying home" and I think that is a worse choice. I continue working on this since my dh passed away 17 months ago. I have a "clean slate" to work with but I understand your position - you are in "limbo". It is not easy for me either. I have been "coupled" since I was 17, many years ago. I recommend looking for a volunteer job a few hours a week - in a area you are interested in. Lots volunteer at Hospitals but I chose the local Art Center. Now have the networking there with about 15 new people - not couples - I did not know before. This Friday I am helping a friend mentor some school children at our local Old One Room School Museum. You are basically a single now - even though you are not. You likely will not get invited to dinner at old friends homes - who are couples. I also not long ago started going to movies by myself for the first time and find I enjoy that - not as much fun as a couple - but we are forging ahead with what we have to work with. Good luck and let us know how you are doing. We care...
I'm with you. The loneliness stinks. Even though my husband is at home, it often feels as though I am all alone, because the person I would turn to to share happy news, sad news, or ask advice, is no longer fully there - sometimes he's not there at all <sigh>. I've lost my best friend. And I know how you feel about family gatherings - I'd rather not go, but I think it is important to force yourself to stay connected.
You should try to seek out new friends. Advice from the web: Take the initiative to be a friend to someone else. For instance, join social clubs, civic groups, volunteer organizations, community events, church activities, etc. These are good places to meet people and build a good relationship. When you attend a group, have something to say. Be informed by reading news, magazines, and books and find opportunities to speak to other people without waiting for them to do it. It is also very important to listen to what the person is saying to you. Remember, if you want to have a friend, you must be a friend.
You might also consider walking groups, bowling leagues, etc where you can get some exercise and make friends at the same time. It is really important to stay socially connect to others, so I hope you have some luck finding something in your area. :)
The main thing to start out is to be with people where you're reasonably comfortable. What we find out is that it's not in our paradigm to go out to bars or normal meeting places when we're 60 (I'm also 60).
The thing to do is comb through your interests or potential interests. It could be a book club, or garden group, or sewing group, or fitness group - wildlife conservation, politics, sports team, whatever. Look up what's around in anything that seems remotely interesting and try it.
If it leaves you cold (and we do need to give it a real chance), then just don't go there anymore. Pick two to four of these and then figure out which one felt the best or least bad and go back and give it a chance.
Failing that you can volunteer at different things. There may well be an organization that helps you figure out what to volunteer for. I'm going to do maintenance of hiking trails as one thing. It gets me out and I'm cleaning up the environment plus anyone I meet will have potential to have some commone bond.
You can also sign up for a group that gets people together. Up here we have something called e-harmony. I'm not sure if that's in the US but something similar probably is. They get couples together who are looking for a partner and I've had two friends in it and they meet nice people. The questionnare is reasonably extensive and the company matches potential common interests plus people can notify you of their own interest.
I know some of these things can be sleazy; but, some are more serious and it's up to both people if they want to see each other or not.
Dolly Madison is not what you want. They hook people up who want affairs. Unless of course our tastes are in that direction.
One of my friends who has met several nice people and is now seeing one more seriously is no real prize to look at. He's very well off but also very overwieght. He had over 200 people willing to talk further and perhaps go out of dinner or something.
We are a growing demographic and it's going to take some doing to get out there and get connected again to people on any level.
I plan to go shopping a lot more and get my groceries fresh at the farmer's market. Go swimming at the local beaches. Walk around and chat with people (it's very friendly in this city of 1/2 million people). That won't work in LA where I spend months working each year for a period of almost 10 years. There's Laguna Beach though to name just one area of many to get some sun on your face.
The real bottom truth is that we have to learn to be grateful for what we have, to look inside ourselves and figure out what will make us more interested in life and feel a bit better, and find the willingness inside to go through the moments where we change our mind and sit at home and say no - and push ourselves past that so we really are walking along somewhere eating an ice cream or going to lunch with some people with a common interest.
Nothing is going to be compelling. But we also find it hard to nudge ourselves out into something new. Try it. If you don't like it - don't go anymore. But then try something else somewhere.
I live in a very active 55+ community. Many single people. It still hurts to see couples walking hand in hand-or even just loading groceries together. I want to go over and tell them to appreciate how fortunate they are. I am very active in too many activities. I'm still lonely. I accept that this is the way it is.
I'm not looking forward to our granddaughter going to college in August. She has lived with us since September and thoroughly enjoy her company. THEN I will feel alone and lonely.
Comment Author Paula M Comment Time 26 minutes ago
Thank you all for your help. Wolf, I do have e-harmony here, but I'm so afraid of the people that are on it. I'm ok, but who knows about them, ha ha ha. I don't know if that is what I really want or not. I miss the movies, plays, and musicals, so in that respect maybe I'm just missing someone to go with that isn't female. Who knows. sometimes I confuse myself. Thanks again for all your input.
I know exactly how you feel. My hb is at home but he might as well be in a facility, I still feel so lonely and don't belong anywhere. I have no family for support, my friends have disappeared when I brought my hb home. I don't know where to go. I've emailed the alzheimers in our area but I have never received a response so I just gave up. I'm starting to have anxiety attacks and don't sleep very much b/c he keeps me up since he can't sleep. Don't give up you have plenty of friends here. HUGS, AND MORE HUGS TO YOU!!.
Lee, don't give up with the Alzheimer's Association. Ours doesn't respond to my e-mail either. Try calling the State Alzheimer Office in the state you live in. I did that and they gave me other phone numbers to call and also had people calling me. Seems people are texting so much anymore - a lot of the younger generation ignores their e-mail. If you have no luck e-mail me, my address is in my profile, and I will talk with the local Co-ordinator here and see if I can't find someone to call you. I am working with our WV Alzheimer Association, starting a new support group for Alzheimer Spouses. Take care...
There must be something in the air (or the water) -- I'm feeling lonely too today. I really feel as if my DH and I lead very distant lives. He spends his entire day in the basement watching TV while I take care of everything else. He only surfaces to eat -- at least he still knows how to prepare toast for himself, which he would eat at every meal if I allowed it.
I think the monotony of the days is the real culprit for me -- the same conversations, day in day out. I have good friends who are supportive, but I also feel jealous of those who can vacation and enjoy quality time together. I keep hearing that we have to take care of ourselves, but quite honestly, I feel guilty when I do. I know my husband depends on me for everything -- I'm not mad at him, but more at all the other people in our families who seem to think that they are exempt from reaching out to him even when I have specifically asked.
There is no easy answer to solving the loneliness issue -- I'm just thankful I can vent here!
Well ElaineK & ElaineH have a lot in common besides their first name. I too have been lonely lately. My DH sits in the living room watching TV, but he gets antsy. I sit at my computer across the room. When I get up to go in another room he asks me where I am going. He is very dependent on me & is afraid to be left alone. I also feel guilty when I do anything for myself. We have a friend, who will come & take him to lunch or sit with him, but then I usually go grocery shopping or do other necessary things & then I try to hurry so that I’m not gone too long. I haven’t had a good day. His emotions ran from being angry to being sorry. I feel so bad because when he is in the sorry mode sometimes I am so cold towards him. It’s so difficult to turn my emotions on & off. I have no time to myself anymore & that doesn’t help. He actually went to bed without me tonight & I am staying up late even though I am tired just to be by myself. I am also thankful to be able to vent here!
Lynn has been in a nursing home since Feb 17, 2009. Over two years and I am still unable to "move on". Some can, and I am very happy for them! Me, I just can't. Last Spring I had a bit of a melt down and was told by my doctor I couldn't go in to see Lynn every day any more. He told me it was killing me. And in truth it was. Having him home, all the stress that entailed, was causing TIA's and "was going to kill me". Having him in a nursing home and going to see him every day, "was too much for me and was going to kill me"
No, it is Alzheimer's stealing the love of my life that was the danger to me. Last Spring he declined so quickly! There were many significant losses.. I have been told by my doctors, some wonderful folks here, and my family, that I need to emotionally detach from Lynn. Well, that just isn't an option for me.
I went through a period of time where I was more than depressed. My doctor said I could go in for one or two days a week, and that was all. He wanted to try that for a few months and see how it helped me. It didn't. It almost destroyed me. I never left my house, and rarely even left my bedroom. The only days I even bothered getting dressed was when I knew I was going to see Lynn. I cried every single day. I cried when I couldn't be with him. And I cried when I was with him, because it hurt so deeply to see him so lost. That blank stare....... that about killed me!
I didn't realize it at the time, but I was in mourning.
In August Lynn had pulmonary embolisms and I almost lost him. It was a clarifying moment for me. I am going to lose Lynn, period. And I came to face that...... It took me several more months to collect myself. I needed that time to mourn, It was painful, but it was also very healing. By late Fall I was ready to face the world again. I was able to enjoy my time with Lynn again, and I appreciate every little tiny thing that Lynn could to do. I could see beauty in the world again.
What changed? I did! I finally stopped listening to everyone around me and listened to what my heart was screaming. I needed that time to mourn. I had been trying to pretend I was "ok" for so long, pushing everything aside, that it finally caught up with me and bit me square in the ass!! I got the poison out that had been building up for years! I am still losing Lynn... and it is still extremely painful. But, now I am better able to cope.
This Spring, one year later from when I thought for sure my life was over.... I am doing better. Lynn is doing so much better on the Marinol.... he talks my ear off every day!! I told my Mom I think God gave us our own little miracle, and I do believe it true. I am not going to "waste" any more of my life. Now I do still go visit Lynn most days, not because I feel “I have to”, but because to see him makes me happy! I want to spend time with him. The difference now is I think about what I can do before or after the visit. I am making plans... nothing grand... but for me a major major step.
So my thought is, there just isn't one thing that will work for all of us. I could not even contemplate something like volunteering before …. but for others it has been very helpful! I think we each need to stop pushing our true feelings aside and look inside ourselves... and give ourselves some time to figure out what it is we need to be comfortable in our own skin. For me, I needed time to truly grieve before I could "move on". There is no right or wrong, we just need to do what feels right for us.
So, if you don’t feel like going out, don’t! If you feel uncomfortable around people, it is ok to allow yourself not to go. We have been tied down for years, it is natural that it will take us some time to re-find ourselves. Baby steps ...... And be kind to YOU!! ((hugs of understanding))
HMMMM I too felt the same way many here have expressed,then last May wife entered an ALF,after 3-4 years of constantly caring for her an then I'm alone,well I did happen to find an old high school classmate an we really hit it off,we'd go out to dinner an talk for hours an I was happy with that,eveyone here remembers what it used to be like with their LO when you could still have a intelligent conversation instead of answering the same thing time after time,well now the problem appears,after a couple of months of dinners an lots of chatting,friend would like it to be more than that an while I've thought many times how great that would be I feel like I would be betraying my wife,she still knows me when I visit but thats about all,she's in her own little world which none of us can understand,I guess I'm really afraid it would change my feelings toward my wife,sorry for the long explanation but if anyone else has been thru this I'd like to know how they handeled it.
You have been able to keep together the reality that your wife needed care and so gave up your own rights and expectations as a human being.
I know it would be tough for any of us to leave - but, that doesn't mean we don't get full credit for staying and helping even though it puts us into a zombieland of existence. We can see that many don't come out of that or find it very difficult afterwards.
This is a matter of personal concience and I think it's ok. For me it would be important that the classmate is supportive of the facts of the situation. But that's just me.
I think you should take on board that you are fortunate to have this and stay realistic about what happens in the future where you will once again be single. I think also that I would reflect on the fact that I've been true above and beyond what other couples generally face. While everybody passes on - most don't have to be this supportive of such a disease.
It's ok to be happy and share some warmth with a willing friend. You're going to feel guilty because that's what ethics does and that's going to come to the fore when you visit your wife.
But you've held together the duality this disease creates so far (you haven't actually been a husband and wife for some time - you've become the caregiver and protector of her) and in my mind remaining those things for her is the relevant part of reality between you and your wife so that you stay 'true' to that committment.
Because if that is true then I can't agree that I would be betraying my wife. There has to be some practical understanding of what is happening and that the very essence of what makes a person a person has long been taken.
There is an opportunity of life being offered to you and you've already said how you feel. "I've thought many times how great that would be I feel I would be betraying my wife."
For me AD in later stages creates an exceptional condition. I would realize you're going to feel guilty and that's as it should be. At the same time life is staring you in the face. If I were you and I turned my back on it, I would be sure that I was a fool.
The reason is that I would be following the form but I would be throwing away the substance.
Don, your situation has been experienced by others. Check back on old posts by "Gourdchipper". I don't remember the details, but as I remember, he and his "second favorite girl" would often visit his wife in the NH together and she supported him in his care of her. Maybe he will see this and comment.
Also, whatever you decide to do, it should be what is best for you. Your wife is already being cared for in the NH. I share your desire for intelligent conversation such as I used to have with my wife, but haven't found that special person. The closest I have is a friend in Rhode Island (I'm in Maine). Let us know how things go. No one here will criticize your decisions. You have to do what is best for you.
We have had many discussions on this subject. It is difficult to find everything, since there are so many topics, and I'm not sure what the discussion topic titles are, but here is a link to many of the discussions: http://thealzheimerspouse.com/vanillaforum/search.php?PostBackAction=Search&Keywords=sex&Type=Topics&btnSubmit=Search - Or just type "sex" into the search feature at the top of this page.
Another link - http://thealzheimerspouse.com/vanillaforum/comments.php?DiscussionID=1624&page=1#Item_0 This one was started in 2009, and has posts as recently as last month.
Also, some articles on the subject - http://online.wsj.com/article_email/SB10001424052748704317704574503631569278424-lMyQjAxMDA5MDAwMjEwNDIyWj.html
http://www.aarp.org/relationships/love-sex/info-09-2010/till_dementia_do_us_part.html - this one is about our member, Gourdchipper.
http://www.forward.com/articles/11387/
http://www.thealzheimerspouse.com/tomandmarycompanions.htm - very good story about two people I have met.
Also, the Barry Peterson situation - http://www.cbsnews.com/video/watch/?id=6601253n&tag=related;photovideo
One thing you can be sure about - you will not be chastised or judged on this spousal forum for your questions about this subject. We, as spouses of Alzheimer patients embody the motto of this website - "Our issues are Unique", and only we understand.
Ahhhhh Nellie I am afraid I am the wrong person to ask. Many here have been able to do so, but I am not one of them. I was able to "build walls"... At the time I didn't even know I was. It felt more like I was just shutting down. I think that is self preservation kicking in.
Old Don, I hear you! I have had a lot of offers for just dinner, just a movie, just friends, but I am well aware where it would lead. And that is something I just am not ready to deal with. But, if you feel you are...then go for it!
Life is short, and I believe our spouses would want us to be happy! I personally do not see it as "cheating". Hmmmm my values say in the earlier stages it might be for me...but in late stage? What/who could one possibly be cheating on?
I have thought about it though, I think we all must. I agree with Wolf.....the person would HAVE to be understanding AND supportive of the whole situation. I have told my family I think I could only be comfortable with another Alzheimer' spouse. And I think for me it is because I know they would truly understand the complete situation. Lynn is my life. He has been for over 25 years, not easy to let that go...... and I know I can't.
But for those who can find happiness while living in this hell...I say grab it with both hands and hold on tight!
Ol don, such good advice given here. Read what Nikki just wrote. And read it again. If Nikki can say this considering how she feels...that makes it more powerful to me.
Also I'm glad Joan mentioned the Barry Peterson book. I listened to it on my respite road trip on Audible. He reads it himself. As a man I think it might really speak to you to hear him tell his story in his own voice.
I've read the Barry Peterson book,in fact I bought five an gave four to LOs four sons that have should no interest until its too late,as for my friend she is a retired social worker for the state of Mich an is well aware of the disease an the care giving aspects,having spent most of her career dealing with hospice care.Now I think I understand when my folks would tell me watch what you wish for
Ol don, I know you will make the right decision after looking at the pros and cons. If you do decide to proceed with this relationship do not feel guilty just make sure you are still there for your wife. I know you will take care of her. I feel like you are a friend that I would enjoy having coffee with even if you did stand me up at the Alabama LSU game. LOL
Like others have said, sometimes just reading these comments helps so much. Three years out of 51 isn't so much and is so much. These should be the times we could share. And I don't mean "House," 3-5 hours of NCIS, Walker, TX Ranger. PJ won't/can't doesn't wear his hearing aides - so the TV is on at the highest level. Sometimes I go down in the basement to get away from the noise and then feel guilty because he is left alone.
Aloneness sometimes is harder than dealing with all the other things.
Tomorrow we start Aircept 23. Am nervous after reading others comments. Just read re Morning or Night? But who di I talk to about it?
To those of you who are the cheerleaders for us who struggle - thanks! Even when comments are for someone else, they apply to all of us who need it.
NancyJ, when did the doctor tell him to take it? If he has side effects, call the doctor right away. You may have to change it. And, you can also contact Aricept - they were very helpful to me in recommending when to change from night to morning. Everyone reacts differently - you know- if you've seen one Alz patient - you've seen one.
Don this disease will test your marriage vows. You see people getting Divorced for almost any reason. You have and continue to put your wifes needs before yours and you continue to see that her needs are being met. She is unable to keep her end of the relationship up, because of this disease. The full weight of the relationship has fallen on you. You have not taken your responsibility lightly. I think your New Friend needs to understand the bind that she is putting you in. Surely she can not be jealous, if she is wanting more than you can give at this time, she needs to be understanding of the situation. I hope that you can work things out with her and that she will respect you for doing right by your wife, know if the shoe was on the other foot you would be there for her too.
I have posted Wednesday's blog this evening (Tuesday), and I invite everyone to log onto the home page and read it. Although there have been discussions in the past about the loneliness of an Alzheimer Spouse and the dilemma of seeking other companionship, many of our new members have not participated in them. It is for that reason I wrote the latest blog addressing this issue. I hope you will all continue to weigh in on this subject, especially our newer members.
Ol Don, you asked "if anyone else has been thru this I'd like to know how they handeled it." I have been through this and I regret it. How did I handle it? Badly.
Ol Don, boy, what a difficult decision! Since reading your post, I’ve been thinking a lot about your situation and what I would do in your place. I can successfully argue, in my mind, both sides of the issue. We may say that our marriage vows did not anticipate AD, but clearly they did – in SICKNESS and in health. The vows don’t say: in sickness and in health unless my spouse is really, really sick and that sickness is causing me to be really, really lonely.
On the other hand, we are designed to be social creatures who need companionship, and I don’t mean casual friendships, I mean deep connected companionship – the kind we have with a spouse. So when that companionship is gone with our spouse, we are naturally going to seek it out with another.
One side of me feels that once a spouse is so far along that they are permanently placed, it would be okay to have a relationship with someone else, as long as that relationship did not interfere with or alter visits with our spouse. In other words, if the new person was making demands on you that caused you to miss regular visits, I think that would fall under the category of “forsaking.” I guess that is the question…can you have a relationship (whether or not it includes physical intimacy) with another person, while still keeping your spouse FIRST in your thoughts and priorities? - without “forsaking” them? Hmmmm…I’m not sure I could. But I would absolutely not judge anyone else who could.
You know what’s pathetic? In thinking about this, I asked myself: If someone defines “forsaking” as having ANY type of relationship under ANY circumstances, wouldn’t the forsaking have already begun with the dinners and the talking for hours? Isn’t moving to the next step irrelevant? I recall many bible study classes were we discussed that all wrongdoing begins in the mind (heart) first – Jesus says if you lust after another you have already committed adultery in your heart. And here is the pathetic part. In examining my own conscious, I realize that I do lust after others in my heart, but in my fantasies I am not imaging sex with another man – I am imagining those dinners and talking for hours. Is that wrong? Well if it is, I am sure glad I have God’s forgiveness, because sometimes it’s the only thing keeping me sane.
So I guess this was a long way of saying – Ol Don, I’m jealous…