Today's Blog is about ALONENESS - something very different from loneliness. It is about making a decision about sharing isolation with your AD spouse or participating in life alone. It was very painful to write. I invite you to read it and share your opinions with us.
Joang, I really don't know what to say about the blog. I have lived the last 45+ years doing things that we both wanted to do. If I want to go somewhere or do something now, I still take Bill with me. Really I probably do more of what I want than I ever have. I used to wonder if he really wanted to do it or if he would get angry if I did something. Now if I want to go or do, I just go or do. Can't really say I'm lonely either. I still talk to friends on the phone as much as I ever did. My aloneness isn't going out for lunch or a movie, it's more just doing what I want to do around the house without someone bothering me. I've always been that way so nothing has changed because of AD. Guess my aloneness would be sitting in the back yard with either a glass of wine or a can of beer, depending on which neighbor is out there with me.
Joan, I think one needs to ask themselves ~if their AD spouse knew your loneliness, or aloneness would they feel sad or guilty about how their illness has affected you? If only we could ask them, and trust that their answer is truly how they feel. Some spouses feelings may be directly tied to the personality they had prior to AD. Others maybe not. My husband, 24 years older, had always outwardly proclaimed that he so admired and loved my independent spirit. Now I believe his true feelings are coming through due to AD. His fear of losing me to a life of independence from him.
The idea of being alone in the universe with a future determined only by your own actions is a popular topic with philosophers. The Existentialists (Google that) have flogged it for at least 100 years.
I spend my alone time with machines like this Linux box in front of me now. I feel quite comfortable building something or another in my shop. I would rather do retirement things with my wife. However, as her condition declines, I don't have much choice.
I really don't believe that any of our spouses would want us sitting there doing nothing with and/or for ourselves just because they were ill. I have a very full and enjoyable life in spite of having the responsibility of the total care of my husband. I am not dead yet nor do I want to act like my life is over. One part of my life is over, that is true, but there is a whole wonderful world that I am still part of.
I have always been happy being alone....my husband on the other hand really enjoyed having people around and noise and hubbub...I teased him that was because of his Italian heritage. So, living by myself (or so it feels), eating at a restaurant alone, going to the movies by myself and other things that I do are not hard for me to do. I consider myself wonderful company...LOL!
I think the alone feelings that are the topic today really depend a great deal on the type of marriage a couple had before AD. My DH was a workaholic and always had so many irons in the fire that I can't begin to tell you how many disappointments I had though the 30+ years of marriage. I have gone to weddings and funerals alone many, many times. I even took the kids on vacation to the beach year after year without him. Therefore, NOW when I am forced to go it alone, it does not seem so strange. Oh, we did a lot together, but we did a lot seperate. He was never jealous, nor was I and we always trusted each other and remained faithful through it all. He has been a wonderful provider and I am now reaping the financial benefits of all his hard work. I am honored to be his caregiver and love him very, very much.
Sid was also a workaholic. I know that is why every minute we were able to spend together was precious. I also feel that, as you point out, it was his workaholism that forced me to develop interests and a life of my own long before I needed to.
Now that we have the time to spend together, his mental and physical health limit what he is able to, or wants to do. Sad.
I have always liked to have a private time for myself once a day usually late in the evening as my DH was a early to bed and early to rise person and I'm a night owl. However, without him I get lonely but it is a loneliness without him i.e., our companionship,. I would feel very alone without a wonderful widow friend who goes shopping, and other activities with me. I also have dear friends in my church family and my friends on the internet . I do not mind being alone but grieve daily for m y sweetheart.
Carewife, Your last statement is so much how I feel. I have my 2 children & their families close enough to share some time together. But it is not the same. The 37 year bond we had is so changed. I still miss and try to hold on to the old times with my LO. He still communicates with me but on a much different level. Thanks for sharing PAT
Add my husband to the list of workaholics...I have always said that I thought his Type A personality and drive to achieve contributed to his stress level and this disease. On the other hand, his success has enabled us to continue to live quite comfortably even after he had to quit working at 50. He sure looked forward to retirement and having fun with grandkids...he is missing so much. My kids are always around and I spend lots of time with our four grandsons...Next week I am taking my daughter and her two boys to the Great Wolf Lodge for a few days. Fun for the kids and a chance for me to get away and relax....if you can call being at an indoor water park relaxing....LOL! I am lucky to have someone who is willing to move into my house while I am away and take care of my husband.
We'd spent much of the past 15 years on a slow project of taking our house from a 1947 Cape Cod to the Arts & Crafts bungalow it is now. Mostly on the basis of my husband's vision and sweat. Still, it took so long because it was biting off so much more than he could chew. And it was an awful thing to live through and to raise children through, but I did. About 8 or so years ago I had a flash thought. Just one of those things that pops into your head out of nowhere. It was "Jeff's not going to survive this project." I filed the thought in the "okay, we'll see about that" department, but I can't help thinking about it, because he's still alive--but by all means, he did not entirely survive.
This topic of aloneness really hit me, because I had been feeling like I was alone in the house, even though my husband is here all the time.
For most of our marriage, if you saw one of us, you saw both of us. We did practically everything together. That’s not possible now. Almost all the things we used to enjoy are now too much of a challenge for my husband.
For a while, it was hard to motivate myself to get anything done. I kept waiting for him to want to do things with me. Then one day I asked myself what I would be doing with my time if I was here by myself. All of a sudden all sorts of activities presented themselves to me, and I’ve been quite busy since then. I’m still home almost all the time, so I can make sure that my husband is okay. But my time is now full with more than waiting. I think this might be good practice for when I really am by myself. If I wait for him to take part in all my activities, what will I do when I am truly alone? If I want to make the rest of my life creative and satisfying, I need to start working on that now. We will be married for 37 years this month. Starting to work on my life alone is not what I had in mind for this stage of life.
Now that I have activities that keep me busy, I am more patient with my husband. I’m not pushing him to do things with me. Most of the time he doesn’t enjoy doing all the things we used to do, but sometimes on good days we are still able to go out and do things. But now I feel like I’m starting to rebuild the life that EOAD took from me. I just wish I could rebuild the life that it took from my husband, too.
I always felt my husband and I were traveling the same road closely together, but separately. He was the workalcholic always on the straight and narrow, I was skipping off here and there to do this or that, always knowing he would reel me back in if I flew too high. I have always been a bit of a loner, I like my home and don't like to leave it--not a party person. But I do enjoy going to movies alone or eating out, whatever, doesn't bother me at all. I've been able to go to movies I know that no one I knew would enjoy and I don't have to share the popcorn. My husband and I shared a common interest in the marriage itself, the home and the children, but our interests were not at all the same otherwise. So maybe it's easier for someone like me because we didn't do everything together all the time--and often enough that sounded very appealling, but it just never happened with us. Of course, I do have family, activities, things to do, but I do miss having a 'partner' a 'companion' someone to sit quietly in a room rogether, just knowing the other one is there. AD has permeated my life in a way I never thought possible. I have written two AD books and I write a monthly column for a senior magazine about AD and maintain my own AD web site, so I have been busy in that way. We were married 53 yrs when he died, and while I have certainly had to build a new life, things have worked out. Not the way I ever imagined, I planned on our growing old together--not doing it alone, but as John Lennon once said, "Life is what happens to you while you're busy making other plans."
I think my wifes EOAD has left me with both. Loneliness in the loss of a relationship that has deteriorated as her AD progresses. Aloneness in that now all decisions and family matters that I thought we would do together as we raised our children are on me alone. Talk about a one two punch.
Ugh! My nice post just disappeared into cyber space.....................
I completely relate to Tony with respect to the kids. Mine are 15 and 17 now and we're into about the 5th year since we started suspecting AD. The kids are so in need of having two parents involved in their lives. I wish they had their Dad to learn from, and receive guidance from. Therein is where I feel so very alone. Everything falls to me, and at this time it is so incredibly overwhelming. Appointments, decisions of any kind, permissions, graduation programs, pictures, announcements, events, required parental participations, everyones medications, homework, rides. It all falls to me. Then DH gets offended if the kids call and tell their Dad they need to speak to me (because they need to explain something, or give directions and they KNOW he can't understand it). It hurts DH, and it hurts me to see him hurt, and it hurts the kids and I both to know DH isn't there for us in the way every family wants Dad to be. We are all alone, AND lonely.
Oh New Realm, again my prayers are for you with younger children to raise alone (but not alone). 15 and 17 are ages that are hard with two parents much less one. The work load; mental and physical has to be overwhelming. Its said God doesn't give us more than we can handle but it just feels like it alot of times. Girl, we can't be there with you but do share your sadness and frustration with the situation. AD STINKS. I know you are doing a great job with all your responsibilities. Keep it up . Its all worth it. Your children although I know its got to be hard on them, have a lot to be thankful for you and your double effort . They might never acknowledge it but they should. And if it wasn't for the AD your LO would thank you, but if it wasn't for the AD, everything would be different.............I hurt for you , If I am babbling..................its because I want you to know I care...............
I relate to everything new realm has said. our kid is 14 y/o and his mom has been too busy trying to go to school to be a nurse and working to pay for all medicine that he has lost twice. my husband doesn't care if i get alone time or not. actually, if i'm alone, it's okay. if i go out with friends, it's not. he listens in on my coversations, reads my emails, phone texts, he's convinced i'm having an affair when he's at his worst paranoia. he won't get rid of the gun in his car. i'm just too lazy to capitalize my letters right now, sorry. been up since 4:00 a.m. working. my best friend (who is a GAY man, LOL) wants to take me to shoot pool for an afternoon, enjoy myself, and just relax. DH had fit and will make my life a living hell if i go anywhere with anyone but him or by myself. i resent it and i don't mind being alone. just not isolated. but he's drug me right down into his world. i figure, this is just the way my life has to be.