There was an article on the internet that quoted results from studies done at the University of Virginia and Harvard University. One of their surprising findings was that many people would rather inflict pain on themselves than sit in a room with nothing to do but think. This article went on to say that a lot of people in the studies chose an option of giving themselves an electric shock, rather than just sit quietly for 6-15 minutes.

The reason this article interested me is that being alone in an empty room for 15 minutes (or longer) is a favorite fantasy of mine! I would love to be somewhere with no phone, no paperwork stacked up waiting for me, and nobody asking me to do anything. And it said about half of the people in the study found the experience of being alone to be unpleasant. (After only 6-15 minutes?) I would have been getting back in line to do the experiment again!

I guess this is just another of the many ways that I feel different from "normal" people now. I still find the experience of being "alone" all the time--with DH here with me--to be difficult. But more and more I find the experience of being completely alone—like being in the car by myself or waiting in a doctor's exam room—to be wonderfully rejuvenating. It's not so much that I want to be alone always, but it's just so peaceful to not have any demands on me for a few minutes. I can just sit there peacefully and concentrate on not thinking about anything, especially all the things that I constantly need to take care of.

I'd like to take part in a study that looks at how many words a caregiver would need to speak before they run out of things they need to say. Things that they've swallowed over the years of caregiving. Conversations they've wanted to have, but had no one to have them with. I do think saying some of those things would be instrumental in our healing, but it's very hard to find anyone who would want to listen to our stories.

Interesting study, I remember a while back when I used to spend most of my time alone at home, but I always had something to do, watch TV or take care of the garden, if I will sit quietly for 6-15 minutes with nothing to do I would just fall asleep. So I guess I’m like this people in this studies!

I have a high need for a lot of alone time. For those who are interested and not familiar with it, the Myers-Briggs assessment addresses extroversion/introversion, intuition/sensing, thinking/feeling, and judgment/perception. Google will show a variety of sites offering this free test.

I am an introvert by nature and enjoy my alone time (real alone time-by myself), but I've always had many friends (well, before dementia) and would attend social functions. While working, I took the Meyers/Briggs test and the tester (an HR co-worker) approached me with the results saying "You're schizophrenic". She couldn't believe it-I was split evenly between introvert and extrovert. She said she'd never seen results like that before. Not too long after, I had the opportunity to speak with an executive coach (someone who coaches execs so that they improve performance and interpersonal skills). His explanation was that I am naturally an introvert but I am an extrovert in the business environment because my profession (HR) requires constant interaction with people.

Personally I think your Myers/Briggs results vary depending on the significant events happening in your life at the time of testing.

It's now 2:40 a.m. and I couldn't get to sleep. I realized that even having an introverted nature does not help when you feel you've been abandoned. Where is everybody? Except for talking to our home health aide, who went to see my husband today, I have not talked to another person except my husband since Thursday. My husband has been in LTC for a month and I had planned to take him home for a few hours on Friday but the weather was awful and we would not have been able to go out onto the patio or yard, so I just visited him there. When the rain stopped, I put out the flag and have kept busy with organizing our closet and drawers and cleaning out the garage but all the time I am thinking, "Where is everybody?"

I called one of my sisters yesterday but no one was home and another sister's line was busy. I guess my husband's sisters who live nearby are also busy with their own families. I almost never hear from my husband's children, who are on the west coast. Why would they call me anyway? I have nothing to talk about except how he is adjusting to his new residence.

I'm usually happy in my own company but it would be nice to know that someone remembered we were alive. One of my husband's sisters and her husband just came back from a cruise to Alaska. I could go on a cruise the moon and no one would know it.

Joinery guy did you get up on the wrong side of the bed? lOL

Myrtle. It is very hard to adjust to our loved one, who we have given so much time to, being gone to LTC. All if a sudden we have nothing to fill our day. My DH has been in LTC for 10 months and I did just as you did. I looked for all the people who used to be in my life. No one called, no one was available and I needed company right then. I am normally quite content with solitude but I am just now beginning to feel comfortable living alone. Give yourself time, rest call a family member or just drop in and let them know how very lonesome you are. It takes time!!
Running out and joining just anything may not be what you need right now.
Last Saturday I cooked the first full meal since DH left. I just couldn't bring myself to spend anytime cooking a roast, but now I am ready for that activity. In the fall I hope to find something to do that I will enjoy., but I will make sure it is right for me not just something I jumped into to be busy.
I have phone friends and a coffee friend and I visit DH as often as I can.
Be good to yourself, don't rush, take time to smell the roses.
I called my son that lives out in Alberta and left a message telling him everything is fine but I am lonesome and would love to just chat. He called back when he got home and we spent a nice half hour.

Hugs

Jazzy

I admit my post was self-pitying. That's one of my faults. Here are my answers to Joisey Guy’s questions:

Are you willing to look into the mirror with a harsh light to see who you are?
No. I’m not. I have been advised by a psychologist to be kind to myself and not to focus on my many inadequacies.

Are you just a person who never developed social skills?
Hmmm. That had not occurred to me.

How can you complain about being ignored by the world?
I’m not complaining about being ignored by the world. I’m complaining about being ignored by friends and family.

What have you done to nurture relationships with your husband’s children?
Over the course of 20+ years, I called them regularly to chat. I listened to their problems and sympathized. Until their children were in their 20s, I sent them birthday and Christmas gifts. At their urging, we flew across the continent, at great expense, to attend every wedding and high school and college graduation, as well as many family celebrations. I helped one of them with a home construction contract and another one with an appeal of the denial of health insurance coverage and with making funeral arrangements for a relative (for which I was called an “angel”).

Want to have friends? Become a friend.
I am already a friend. Once every couple of months I hired a home health aide so I could have dinner with two of my girlfriends. I have been a good friend to my sisters and my sisters-in-law. When one of them unexpectedly ran into trouble with the purchase of a house and had nowhere to live, I asked her to stay with us until she could get into the new house. (She stayed for six months and we had a blast.) I also helped my sisters and sisters-in-law with many DIY home improvement projects. When a friend’s husband died at age 59 and she told me she could not bear to address the issue of funeral arrangements, I toured funeral services in her area and gave her a summary. She was able to take it from there.

Like reading? Join a book club.
I don’t want to join a book club. I already belong to two garden organizations in our community, and have volunteered a huge amount of time to one of them, although during the last 3 years, I have not been able to attend many meetings.

And here’s the answer to a question Joisey Guy did not ask – Why were you awake at 2:40 a.m.?
Because I was having an asthma attack. I invited 3 of my out-of-town friends to a cookout and an overnight next weekend to celebrate one of their birthdays but I could not find the propane canister for the gas grill. While searching for it in the garage, I got involved in cleaning. As a person with asthma, I know better than to root around in the garage but I did it anyway. For this I admit: I AM AT FAULT.

myrtle, you go, Girl!

I was in tears yesterday because my DH was concerned about my being alone so much. I finally told him that I really am not upset about family and friends not stepping up. It's the fact that I "miss us." I miss my best friend and lover. I miss looking over at his chair and he is there. I miss getting up in the morning and sitting out on the porch and having coffee. I miss having someone to have meals with and just any of the everyday things we used to do. I miss hearing him call my name to see where I am.
I just miss him! No friends, family or clubs will fill that hole in my life. He is here but not here!
My friend who lost her husband to COPD three years ago still misses these same things. I guess even death can't stop the missing of our partner.

Mtyrtle glad you set the record straight. This is hard enough with out being reprimanded for a broken heart.

Have a great time at your B.B.Q.

Hugs
Jazzy

"So you have nothing to talk about with your husbands kids other than your husband ? Could that be because you're not interested in their lives? What have you ever done to nurture relationships. I wonder if you are...a person who never developed social skills."

I never thought I would read such trash on this board.

The questions he posed are some good ones, but they should have been posted in the 'I' format or general instead of aimed at one person. They are ones to give some thought to as we reinvent ourselves after the changes this disease does to us.

We all know that caregiving changes us. It changes us inside, it changes the way we interact with other people including family and friends. It changes our view of the world and what is important. As many problems as there were with my husband we still mostly existed with each other. We did most every thing together. At times we did have couples we did things with but either we got 'burned' by them or we moved away never to hear from again no matter how much I tried. That working partnership is no longer our life, our marriage identity.

We were the ones to travel from the Oregon/Washington to visit his family in Massachusetts - his parents only came out here twice in 30 years before his mom died. We were expected to go there, not any of them came here.

My family was no different. Again, it was unspoken that you are welcome any time but don't expect us to come visit you. My mom never came to visit because I would not let her smoke in my house even though we would visit here every 3 months driving hours for the weekend visit. My kids were convinced that grandma did not accept them because they were adopted. I kept telling them it was because I would not let her smoke in my house but they never believed me. Sad to say, about ten years ago I discovered that most of my family never did accept my kids as family because they were adopted, not blood which shocked me because step kids were accepted. My nieces and nephews always said mean things to them and I would try to convince them they were just being kids. My kids knew better.

My youngest sister and her husband stop by but only because they are going by on their way to somewhere else. In fact, in May we met them about an hour away because they did not want to take the path by us. Asking her to come be here when I had surgery was hard to do, but I needed someone and there was no one else to call. I raised her and my younger brother the first 11 years of their life - was expected to take care of younger siblings. I have a big emotional attachment to them, almost like a parent, but we also had years of a strained relationship starting in their teens because i did not approve of their drug use and other choices. When they became adults it took years for them to forgive me for having different standards than them. Plus, like all my siblings, we did not have anything in common.

My daughter I don't talk to for the reason I do not accept her lifestyle choices and we have nothing in common. She chooses to stay with an abusive guy, many of you know all the horrible things she has said to me. In January she told me I only adopted to prove I could be a worse mother than mine and she wished we would never have adopted them. She has sent me two email, one of pictures, the last month acting like she never said the things in the past. I have not responded to either even though they were nice, and I have no intentions of responding. My son did move back to Washington from Oklahoma and showed up Father's Day. He was visiting his kids who he walked out on 3 years ago and came down with grandson. This is the first Father's Day in years he has called/visited. His dad remembers nothing of it, didn't within minutes after they left. He gets no credit for finally visiting. Sorry if that bothers some. We too do not have much in common, so could care less if he is in our lives.

So when this is over, there will be the reinventing. Until then, there is the loneliness of being in limbo. Really can't move forward when you never know what today will bring. I have changed some - less computer time, back to watching more TV. I am trying to get back to walking 2 miles but with it so hot, it is hard to do since I am not an early riser. I was going to start swimming this week but with the temps 100+ every day, sunburns do not interest me. When you are in limbo it is hard to plan.

I imagine when your spouse is placed you try to get out of that limbo but it is hard. There is a lot of stages and work to do just to get our lives back to living.

Joisey guy,that was really laying it on a little thick, but perhaps it came across harsher than you intended--and Myrtle did handle it well. (Go Myrtle!) But it did get me thinking. I do like a lot of time to myself, AD caregiver or not. I like to work on my writing and my music, and truthfully, you do have to almost encapsulate yourself in a sensory deprivation chamber if you want to get anything done. But having said that, there is a special (well, it's not special--but it's unique) kind of isolation that caregivers have to endure. First of all, there's the isolation of living with a loved one who is Looneytunes, so that the wonderful relationship you had at one time is now a ludicrous parody of what it was. If my DH was still in his right mind, he would be the one person above all who I would want to be with--above friends, family, or anybody else. To spend hour after hour with him the way he is now is a cruel joke--and a unique kind of loneliness that no reaching out to others is going to help. And then, as others have posted many times, there is the shunning that you have to endure as an AD caregiver. "Friends" and family just disappear, for the most part, or else they extend some occasional, superficial courtesies that are essentially meaningless gestures. (Bring over a dessert one time, stay for coffee, and you never see them again as they go to their vacation home or to Europe, congratulating themselves on how charitable they've been.) So while it's true that to make a friend you have to be a friend, as an AD caregiver you're really not in a position to be a friend. When this is all over, I don't want to be too close to people, and I know it will take me awhile to recover from this 14-year and counting experience….so maybe I am another person you might criticize in a post. But I will truly try to figure out how to help other Alzheimer spouses, and I will do my best to contribute to their well-being in meaningful ways for the rest of my life after this.

OK Joisey, I remember your first post...very self serving, woe is me, my needs aren't getting met, etc., etc, etc. Looking for "companionship" really meaning sex. So now that you and the "other member" (we know who she is, should I name her?) can hook up life is good and you can pass judgment on everyone else?? Yeah right, you're 2 "normal couples" going to the movies? Who are YOU kidding???? I don't care who you hook up with or why but you're just mean. As I recall, everyone here was supportive of you when you posted, so why are you being a pr**k to myrtle? Because you're happy in your hook-up "normal couple thing, "?

In case you think I'm just spouting off, I just reread all your posts to make sure I got it right and I did. When YOU needed help, consolation, and support we were here for you. Why don't you consider paying it forward? When you initiate the post you're desperate, but when you respond to some one your "tough love" and cruel. what's up with that?

At issue is that we do not judge and we do not attack.

In re-reading the chain of posts I don't believe there was any intent to hurt. More to shock into action. But I still believe because of the state the disease pushes us into - we need to be vigilant that the board retains it's strong ethic of support.

I once wrote a comment that included doing violence in a comedic way. I received an email from Joan explaining that she had removed it. She was protecting the board as a safe place and I agree.

In that same way I think we should consider the truth of why this board is here and the very real damage we are suffering as human beings. Including the desire that no conflict of opinion escalates.

We have lost members who have left this godsend because something that was said greatly hurt them. All are vulnerable in our own ways and there are ways to make a point that keep this in mind.

I believe the point may be made and while I don't pretend to speak for anyone I hope we move on.

I think this was a great topic and I was so happy to read the many comments.
Does this loneliness lessen any after our loved one passes?
I also was happy to read all the support for myrtle. Her sharing was so close to home. She at 1 month , me at ten , but so similar. Then so many others living the same feelings.

Thanks for bring it up, myrtle.

Hugs Jazzy

I cannot get involved in the Myrtle/joisey guy discussion right now - see new discussion about Sid and hospital. Our message board monitor is "monitoring", but you all seem to be doing a good job being respectful with your comments. Thank you.

joang

I have been lurking and reading this thread since it began, and call me off the wall, but I don't see anything wrong with the discussion.

Please be clear, I am not taking sides, if there are any sides to be taken.

What I am reading has caused me to do some soul searching, and builds on a discussion that Wolf and I had when we met.

I have been described by my friends as "self reliant" and independent" and I know how difficult it is for me to reach out to others. I have also been called "reserved" and "hard to know" because I am an introvert by nature, and I tend to keep my emotions in check and my cards very close to my chest. However, I had a career, like LFL's where I had to deal with a great number of people and so I moved on the Myers Briggs scale from an introvert to a "forced" extrovert (schizophrenic as LFL describes it) and came home after every social event exhausted because I had spent my time pretending to be someone I wasn't.

I don't intend to go out and make new friends. I would like to hang onto the few good friends I have. I am perfectly happy when I am alone, and can easily feel lonesome in a room full of people. This does not mean that I do not crave companionship from time to time. I know I have to look outside my home to have a normal conversation.

I do think that introverts make better care givers than extroverts, because we don't need the same level of outside stimulation that extroverts need (some of my employees were extreme extroverts and couldn't stand the sound of silence). But so far I haven't seen any comments from people who claim to be extroverts on this thread, and I would be interested in knowing what they think.

bqd ,your comment is exactly what I would have written about myself.People say I am so self-sufficient,so dedicated to caring for my husband,maybe that is why friends stay away??

I'm not sure which I am any more. I was an extrovert, no doubt, prior to Kathryn being diagnosed with ALZ. But she was my life priority before the ALZ and even more so once we started this journey (I lost Kathryn April 25th 2013). I retired to take care of her and do not regret one minute of it and the only thing I would change if I could is it would have been me instead of her that got ALZ. She loved life and it was taken from her in the worse possible way it could be. During the course of taking care of Kathryn I developed the ability to sit and read for hours at a time. I stayed home most of the time with Kathryn who half the time didn't know there was another person in the room and who didn't remember me at all the last two years and never really talked to me during those years so. I learned to be an introvert. Our friends never stopped being our friends. If I took Kathryn out to eat I would call and ask one of the couples if they would like to go out to eat with us and they almost always said yes. If Kathryn needed to go to the bathroom one of the ladies would always accompany her and assist her. After a while ( once they learned it was ok) they began calling me to see if we wanted to go out to dinner also and I always said yes if Kathryn was having a good day. If she wasn't and I had to say no I was always sure to explain that Kathryn was having a bad day and could not go at that time but we would love to another time. I believe it is necessary to keep your friends in the loop and to go out of our way to include them also and if you can't make it let them know why and that you would like to another time and to keep you in mind.

My problem now is that all my friends that were so great while I was taking care of Kathryn are married and I am not. They have families they are involved in and I understand that but I don't have a family. My friends prior to Kathryn getting ALZ fit so well because we were all married and involved in so any of the same activities. Now I can do anything any time because I don't have anyone that is dependent on me (and to tell you the truth in a way I miss it). It became so much a part of my life. I find that I simply don't know what to do with myself a lot of the time. I loved my job but once you retire you can't go back. I play golf but I can only play so much golf. I tried bowling. Its not for me but I do wish it was my golf score. I'd be a pro. I go to movies once or twice a week but that's kind of a drag. I am not ready to get involved with another woman yet. I still Kathryn a hundred times a day. I sleep on a sofa because it is the only place I can sleep. That is where I would sleep outside her door so I could wake up if anything happened during the night.

There are a lot of adjustments to be made both during and after Alzheimer's enters your life and when it leaves. There are no pat answers for any of us. All we can do is our best and continue on living and hope to eventually find our way again.

JimB

PS. I was such an extrovert that I would beg my father for a spanking and he would make me go to my room for the rest of the day and think. My brother was such an introvert my father would make him go out and play when he did something wrong ( he was happy in his room studying boy scout stuff and listening to music).

Hi Anchor 20. I wanted to thank you for sharing your journey. Yes it does take some time to reorient our lives after so much caregiving. I have many of the same feelings as you since I placed my husband. I feel like a widow but am not and somewhere in between. I visit about 2x a week and usually take him out since he can still walk. It is difficult to have conversation because most of what he tries to say does not make sense. I know I am an introvert and have always been. Maybe that makes it a little easier because I like the quiet and relish my time. I enjoy socializing too but do not to the degree that an extrovert would. I feel,that one of the real dangers of this disease for the caregiver is that one can lose themselves and their very identity in caregiving to where their entire purpose is caregiving. If that happens in my opinion it makes it even harder after the fact because so much of who we truly are has been buried. I have a friend who lost his wife almost 3 years ago and he still attend grief groups and he says that the overriding thing that most people say is "I do not know how to live alone." Focusing on myself has been a new experience for me and I am just taking it day by day putting one foot in front of the other. I always hated when people would say things like you should do this or that. We each have to find what works for us and no one can tell you. Perhaps a grief group may help but maybe you have already done that. God bless you. At least your loved one has ended her journey and is out of her suffering.

JoiseyGuy, when I read your comments,I thought "whoa there". I understand what you were saying, but it could have been tempered with a little kindness & compassion. This is a very frustrating, sad, difficult thing we are all going through - we need each other!

Myrtle, ya' dun good!!! :) You're handling things very well. I, too, am somewhat of an introvert - like solitude, always have, bit I know there's a big difference between aloneness & loneliness.

Whoops -battery just ran out!!

LadyGolfer - your last remark in your comment was right on the money. Men are essentially "fixers", where women just want to be heard & acknowledged (at least that's what I think). Pretty good discussion,actually!

Abbey*, I don't know what your profession is, but could you get back into it?
I had been a Registered Nurse, stayed home to raise three children at my first husband's request, took a refresher course on my second husband's advice and worked as an R.N. until I retired. I never got back in at the same level and had picked up some health problems along the way, but I had some interesting jobs and made enough of a contribution to receive an award for "outstanding contribution to nursing."

Jan K.

Just wanted to say thanks for posting this very interesting subject.
I hope you get your turn at that cherished "quiet time."
Many here at Joan's understand the lack of support from those around us.
Finding a good ear to listen to you is quite a task. Maybe a personal journal
would help, and you always have us here.

-part two

On this saturday morning my paper says there are four events going on in the city today which might be fun. I can step outside as I type and speak to my neighbour who is outside tending his tomatoes. I can easily expand that and end up sitting on his porch for an hour or two. My neighbour across the road owns a Harley motorcycle and sits on his own porch playing his electric guitar with his talking cuckatoo. My other neighbour has a cottage on Lake Muskoka and I know I'm welcome to visit. That's the same town my best friend has his cottage near. I would be very welcome to phone and invite myself there too even though I was there last week. My sister is at her trailer on Lake Erie. If I phone her cellphone I will be welcomed. I could visit Dianne but I was there yesterday and had the other workers laughing while we all fed those who needed help [eating] their lunch where I started singing out loud with made up words in harmony with the patients who were making their normal noises. One woman sings La-La. La-La. La-la-la-la-la-la-la-la. While Antonio joins in with his fine voice in Italian. Others provide the percussion. "Who's going to feed us lunch? Who's going to feed us lunch? Who's going to feed us lunch?...I used all that and ended my little song with "and one flew over the cuckoo's nest". That's when all the (women) workers laughed.

I am very lonely and I spend way too much time alone. I can work the duality of watching out for my wife while working on having more fun as time goes by I can see; however, I suck at inventing a new life with meaning I can also see.

The thing about seeing that what I can do is find moments where I have fun is that I can find more of them. And the thing about being alone is solved by using the door conventiently already in my wall. Saddness I can't do anything about. Neither can my friend who 'remarried'. I asked them both about that and they share the hard days of their respective lost partners together.

Conclusion: Try and find the courage to take steps towards the things we feel we really need inside. I had no such options when I was the caregiver where coping with the increasing demands over years took everything I had. Now well in my third year home alone where the reality of my wife is one part of the dual life I live and the bizarre but vital pursuit of a life for me is the second part, I feel able to not only do things but equally important perceive they are there and the third and critical part: wanting something and feeling that despite what we've all been through.