The longer this goes on the more lonely I am getting! I even checked some dating services and I am not even single. Is that stupid or what! I also think the main reason I stay up all night and sleep during the day is because of loneliness I just used the fact that the neighbors complained about him going out at 4 in the morning and was naked peeing outside as an excuse to stay up all night so I wouldn't have to face my bed at night. That is so lame! I am 56 years old and have been married since I was 38 years old to a man that didn't even want a wife, he wanted a slave and then...he got sick! I want love so bad I can't stand it, I watch all the couples at church go home together and I know that they are going to go to bed together and wake up in the morning together and have each other to help the other out with any problems that they face and I get to face everything by myself like I have been for years now. What am I doing? Am I going to have a life left by the time all of this is over? Is any body going to want me by the time I am free to have anyone? These are all the thoughts that I go through every day. No matter what I do I can't shake these thoughts. I dream a different life, I make a different life up when I am not dreaming. What is wrong with me? I was going to go to the local support group this month but I couldn't because I didn't have money for a cab. Even the smallest things I try to do I can't!!!!!
Deb. I do hear you. It is true that we r all lonely-- some more than others. I guess I am fortunate because I do have male friends to support me. One is from the support group and one is not from the support group. I don't know how much you are getting out to socialize but I know that has helped me to just be in situations where I can talk to people. Since placing my husband I realize I am in the midst of grieving so many things that I did not have time to do when he was home. Many times I do not feel like socializing but I realize isolation is not the answer either. Yes do attend support groups. Support groups have helped me realize that I am not alone and that some people have it worse than me. Yes I know what it feels like to be lonely. I have often thought that yes I can be lonely but there is a difference in the feeling of loneliness and being alone. I have learned that feelings can change. Yes you will have a life when this is over. At least that is what I tell myself. It may not look or be exactly as I planned but yes we will have a life. My marriage was not the best but now that he is placed it is better because I am no longer angry and resentful. Hang in there. Continue to post here because writing helps too.
I know I got through the years of caregiving--when there was no companionship in particular, but he was home with me--by finding WHATEVER I could find to do to keep myself mentally stimulated. Usually that involved somehow getting out of the house and among other people, other things. At home I distracted myself with some video games and developed a crush on Errol Flynn (I've got some dvds.)
I did whatever I could take him along with me to do, because he was placid and cooperative for the most part.
When resources are very limited, are there local, free options? Things you can walk to? A senior center he could go to?
Deb, I am so sorry for you. This caregiving is hard enough when the marriage is wonderful and you love him with all your heart. I took care of Lloyd for 7 years and he never went to a care facility. He died at home in his own bed with his own things and his family around him. I made up my mind how things were going to be at the diagnosis. I promised him I would take care of him and be with him and see things through to the end. I feel blessed to have achieved that. Might I suggest you start putting yourself first and learn to like yourself best and take care of him from that perspective. My first marriage was with a man who liked to call all the shots and treat me like property. My marriage to Lloyd was a whole new ballgame. Of course in the interim, I learned to love myself and be my own best company and that made all the difference when falling in love with Lloyd. He knew I loved myself and didn't need him and what my expectations were and he was good with it. Like I said, I am so sorry for your situation. Am sending {{{hugs}}} and prayers your way.
Deb, I am so worried about you...your sadness and loneliness have gone on for so long, it's just not good for you (duh!) Are there any volunteer organizations that could perhaps drive you when you need to go somewhere like the support group meetings? I too think getting out of the house and being with others would help a lot. Perhaps someone from your church group or the senior center would volunteer to drive you when you need a ride. We have very few resources where I live but there are volunteer drivers we can find to help us (we live in a rural area). I know we've suggested this before but have you contacted the Area Office on Aging or the Red Cross to see what services might be available for you? (((HUGS)))
Deb - I hear you. Is there life after this, how damaged will I be, will anyone want me, do I want anyone again and on and on.
I was talking to my best friend the other day, her hubby died from cancer 2 1/2 years ago and she went through a long mourning period but has come out of it with the help of counselling. Well now if I need to talk to her it's after 10 at night because she is just too busy. Anyways something she said to me, that was so thought provoking that I wrote it down, was.....It seems the more I create the life I love, the less I feel that someone or something is missing.
I am now working on creating...as much as I am able right now....the life I love. I need to love my life before I would ever think of having someone else, if ever, come and share it with me.
Deb--I don't know what your circumstances are, but you sound like emotionally you are ready for placement. Have you looked into what options are available and if you don't have funds, have you started planning for Medicaid? You describe your marriage as if there were never happy times, so it makes sense that caring for your husband at home is taking an enormous toll on you. At 56 I can understand that you want love in your life, you need to take steps to free yourself up from day-to-day caregiving so you can make that happen.
Deb, your pain just rips at my heart. It is almost unbearable to go through this war with our spouses when there was a wonderful strong marriage. Those of you who did not have that strong loving bond to help them through these difficult times, I just don't know where you draw your strength from. I honestly don't know how I could have survived as long as I have if it wasn't for the foundation and memories of our wonderful marriage.
My heart goes out to you ((hugs)) We have discussed here many times the need and want for companionship. I think perhaps this is even more vital for those who did not have a fairytale marriage. I don't think it is stupid that you look at dating sites at all Deb. Your loneliness is crushing you... why not follow through and see if you can find someone to communicate with?
I am still deeply in love with Lynn so I have not gone this route, but I can certainly understand it in your situation.
Love is so powerful and precious, when you find your soul mate your whole world is better just because they are apart of it, a part of you. It truly is amazing! Who could fault you for wanting to find and experience that kind of love? Why not stop dreaming and just go for it :)
Deb, I am 21 years older than you. I can tell you that those couples at your church are not all fairy tale marriages. Church is where people put on their happy faces. People thought my hb and I were like that because I for one did not make scenes and put up with a lot of stuff for the sake of keeping my cool. At home it did no good to argue as I could never win. If I were your age I might be looking also. Just be careful not to further complicate your life even more.
Thank you everyone so much! I have been sad and lonely for way to long LFL, I think it has become debilitating. I think I have called every organization in the book and Medicaid seems to be the only answer but we don't qualify because we "MAKE TOO MUCH MONEY" What does that mean...1,200 a month is too much money? Oh brother!!!
I got a response on the dating service I am on. I didn't pay the fee yet so I couldn't see the whole message but he said "I hope you know CPR because you take my breath away! So I said Awww Shucks!!! No I don't know CPR! Normally if I would have been single I would have thought that was corney and I almost asked him if that line works with every woman he talks to but I was actually flattered. That is desperate...so terrible!
Deb--I just did a quick Google and saw that "in most States you can make up to 300 percent of the SSI income limit ($2,130 per month in 2013) and still qualify for nursing-home-only Medicaid." Have you consulted a qualified elderlaw attorney regarding Medicaid eligibility?
So in other words he would have to qualify for a nursing home in order to get the financing? That is the problem then because he isn't qualifying yet. They are more interested here in his physical condition instead of his mental condition in qualification. He can still walk, which is a big thing, he hasn't fallen at all or even gone to the emergency room for anything. Even though he is eating hardly anything he is not losing weight like he did a year ago so for whatever reason he doesn't qualify yet and it is very frustrating because mentally he is gone and I am just impatiently waiting for the physical to be gone too. I hate it so much because people are still looking at him and saying "He looks fine to me." That makes me feel worse because I don't like to be looked at like I am a liar!
Hi Deb I am 56 like you, have been on this journey for 6 now. Like you not a very good marriage, totally detached emotionally for many, years before diagnosis. No words of wisdom for you ... this is just plain hard. I long of the things you do. No easy answers. We are here for you.I just wanted you to know you are not alone.
Deb42657 I am 63 and it is a year since my DH dx. I too feel lonely even in the midst of friends and family. But especially alone with my DH. The memories we shared are only mine. They are the glue that held us together and made our relationship.
Sherizee Though it had been a few years before the dx , when our life together began to unravel, I didn't know the problem at the time. But, it has been lonely and hard..very hard for a while. I marvel at how long some of you can go on like this and wonder how I will.
Sherizee. I look forward to reading your blog each morning. What you write is so genuine and real for those of us Living in the Shadow .. Would like to comment sometimes but I can't figure out how. Help!
Lorrie, I have been trying to think of some good memories to hang on to and the only one I found was our engagement! How can a man deceive me so thoroughly? The minute he said "I do"...he didn't. Sherizee, I didn't know you had a blog! I don't know much about blogging, how do I get to yours? I don't know how I am going to keep doing this either! My life...like everyone elses here is terrible! What can we do? Nothing!!!!! Just keep hanging on to one another and the invisible rope that we have and swing for the ride. I am still going to try to get to the local branch and maybe that will give me further support but other than that I am alone because all of my past friends are gone...still here but gone, which is worse than if they were just gone! I look at them every week and wish I could just scream at them and tell them I am still me and it was me that you were friends with. I haven't changed! It doesn't work that way.
Ladies, I know how you feel, as I will be 66 in a few weeks, and while wife has had emotional problems for years, the dementia has only been obvious for recently. We think we have not changed, but we have. The "friend" network has diminished, and we're not asked to go out as much. We don't get asked to babysit for the grand kids, as they never sleep over. We wind up living in the "normal" world outside the home, and the the "dementia" world at home. I really miss the passion and intimacy of a real relationship. As a caregiver, I just can't get excited by my "patient" who has no short term memory, initiates nothing, and only seems to remember she needs her hair and nails done. I'll know she's completely gone when that stops. "Lonely" in a perfect title for this thread, because although I work part time, play lots of sports and have lots of casual friends, I sorely miss my wife and feel lonely all the time. We think we don't change, but Deb, we do. I'm looking for a local support group for spouses, not so much for the support but to meet a woman who would like to be a friend with benefits.
deb42657- I hope it is okay to post this here the blog web address is www.sherizeee.blogspot.com or you can find by googling "Living in the Shadow of Alzheimers" . :) There is a section on the right with the older posts but it goes back several years now, but if you have time on hands the evolution of hubbys disease is apparent. :) thanks for asking!
Lorrie- thanks so much for letting me know you read the blog! If you are on the actual web page reading the blog there is area right under the blog post that says "no comments" or if someone has made a comment it will say 1 comment. You should be able to click on that word " no comment " and it will bring you to the comment box to post a comment. Wow that was a mouth full lol. There is also a contact form on the right side as well :) Thank you so much for asking! Let me know if you figure it out!
Deb, Wolf said it so eloquently in a previous post...yes, we have changed and our friends have not, just like joisey guy said. I know we feel the same but truthfully we are not. As caregivers (willingly or not) our world gets smaller, we are more inwardly focused and do whatever we have to do to survive another day. That is not normal and not the life we lived before dementia and certainly our "friends" are not living that life if they are not caregivers. I am not preaching...I feel angry too that friends and family no longer stay in touch or seem to care, but it was Wolf's post that really made me realize I've changed, not them.
Joisey guy, since you are so physically active and enjoy the gym, perhaps a place like a gym or some organized co-ed sport might be a better place to meet someone with your interests rather than a spouse support group. It might make for a healthier relationship.
I hate the fact that I have changed but I think some of the change is for the better. The reason I say that is I am a lot more understanding and empathetic towards people that are going through anything difficult. All the people that I thought were my friends are the ones that have a problem because they have a handicap when it comes to dealing with LIFE!!! Whether I wanted to or not I learned a lot about life and people...with that being said...I also hope that once this is all over with I hope that I get back some of myself and my personality that I seem to have left behind! LOL
I have found this thread and the concepts various and interesting. I have said most of the same things myself about the loss of companionship of my DH and friends who have drifted off...and to be sure there is an emptiness that is felt and it is real...Just tonight I was going through some cards the kids gave their dad for his birthdays and father's days...they said they would like to have them back as keepsakes. I also found cards he intended for me that he had not given either because he forgot he had them or he had someone help him have a supply for those special events coming up..in any event, I found them in the envelopes all unsigned and now never will be signed. I know how hard it is to lose our LOs inch by inch. But cherish what you do still have, you can still see them, touch them, hear their voice and see the glimmer in their eye. When they are finally released from this dreadful disease, then you will be introduced to a new kind of emptiness as you figure out where to go next, what path to take to rebuild your life.