Does anyone else feel as lonely as I do?

i didnt get too lonely while caregiving. it feels strange calling it that because i stayed with her and cooked / watched out for her for 6 yrs but only the last year involved strategic babysitting. i just felt like my life was on blocks and in a hold pattern. now that mom is gone i still dont mess with people much. for the most part they annoy me. people and them fn bats that keep getting in here..

Whitesage caregiving IS a very isolating experience. Very few people understand what it involves, so over time you tend to get more and more isolated because your old friends drift away or you feel bad always talking about your loved one and how they're doing. I don't feel super lonely, but I do totally feel like my life is on hold. And some days it feels like this will never change. My mom is 94 and I'm 63 and have been doing this for 13 years, so I guess it's understandable that it seems like it will go on forever.

I have worked very hard in the past couple of years to get out and do things for myself, so that I am around other people so I don't feel so isolated. Luckily I have a mom who supports me in that, which is unlike many people in these threads. So I'd try to stay as active in your own life as possible...

I completely understand how you feel..it is so consuming and depleting emotionally that sometimes that's all we have to talk about...I dread the question, so what do you do? Or how are you doing? What's new? .I feel very isolated...also like I don't have a life...I know that's my job to find one but sometimes it feels like too much work...thanks for reaching out...

blannie - thank you so much. I know I am not alone in this caregiving journey, but it can be so hard at times to deal with my loneliness. You are right, friends are slowly starting to drift away, mainly because I just don't have the time necessary to cultivate and maintain relationships/friendships. My mom and I used to have a great relationship with a lot of healthy communication, but that aspect is gone. She doesn't know who I am and is completely dependent on me. Some days, I am okay, but there are times when it really gets to me.

Smitty - thanks for your post. I also hate those questions.

Whitesage...are you getting help from relatives? Just wondering...

Blannie...good job...it does take effort to take care of our emotional and social needs. We can get a break and recharge so we have the grace to keep caregiving...that's my viewpoint anyway..;0))

Whitesage -

I definitely am right there with you. Caregiving for mom, coupled with my 60+ hour-per-week business (working from home) means I am in front of the computer for about 12-14 hours a day, with breaks only to make meals, let the dog out, and do the housework when I can. (And the housework sometimes takes a backseat to everything else, and I have to play catch-up the next day.)

I see my friends and family posting on Facebook all the time about how they went to see this or that movie and how good it was, that they took a group of friends out to the local pub for drinks and conversation (conversation...what's that??), a group of ladies went shopping and had a girls day out, etc. I am never asked to go with them, nor does anyone (not even my siblings) bother to ask if I could use a break. I have asked repeatedly for someone to just come and take Mom out for a ride or out to dinner - just to get her out of the house for a while, which would give BOTH of us a break - but they won't even do that. I get one week a year where I can go visit my son in another state, and that whole time, I'm worried about Mom, who is somewhat mobile, but is prone to falling and forgetting to take her meds or shower. When I went last year, I *begged* my siblings to check in with mom by stopping by - none of them did. (Her best friend came by several times, thank goodness, but that's not the point - her CHILDREN should have been here.) I arrived home to find she had not showered all week and had missed 3 days of meds. So now I'm reluctant to go this year, unless I can be sure someone will be here to check on her every day. She really cannot be alone for more than a few hours.

Some days, I feel so alone and lonely. People ask me if I will ever be interested in dating/marrying again - I have to laugh out loud at that. They've got to be kidding! Not to be morbid, but Mom is 73, and her mother and grandmother lived to be in their late 80's, so I have at least another 10-15 years of caregiving for Mom. Even if she gets to the point where she needs to be in a nursing home, I will be there for her every day. Dating and/or marrying is not anywhere in my near future. (I'm not really interested anyway - long story.)

I would love to just have a break sometimes, even if it's just one of my siblings taking mom out for a ride so I could have a couple of hours to myself just here at the house - I'd feel like that was a vacation! But they simply won't do it. There's always some excuse. But they can run their in-laws all over the place, take them everywhere with them, and do all sorts of things for them - just not for their mother. Some of that may relate back to our childhood...I don't know...I just know that they all act loving towards her when we meet for breakfast on Sundays at a local diner - but beyond that, it's like they don't want to know she exists. Other than the occasional phone call, they don't bother. I guess I should be thankful for that - it could be worse.

I, too, gave up everything I had and loved to move in with Mom when Dad became ill and passed away in 6 short months. I lived at the hospital with Dad, night and day, because he was losing his memory and the docs wouldn't get all the pertinent info they needed from him - until he became comatose and then I ran back and forth between home and the hospital with Mom, 120 miles round trip every day.
I had a beautiful (rented) home, which I had to give up when Dad passed away, meaning I had to sell all of my large furniture and possessions (quickly) - which meant I sold it all for a pittance of what I should have gotten for it.

Some days it seems this situation will never end, and indeed, I know that I am only at the beginning of what will likely be a very long road, if the ages of my grandmother & great-grandmother are any way to judge it. I keep hoping the feelings of resentment towards my siblings and the loneliness will get easier, but somehow, I don't think they will. :-/

Smitty - I have an older sibling, but we are estranged from one another. I have someone who gets paid to stay with my Mother on Sunday so I can have some time to myself. I moved here to live with Mom from another city, so I have a very small network of people that I know.

SusanA43 - I wish I could give you a hug. I know what you are going through - you are not alone. There are many of us living in this universe of caregiving. Connecting with people on this site has really helped. Makes me feel like part of a community. Hang in there!

I have found a lot of activities through MeetUp. It's a website that was started after 9/11 to put communities of people together. I can't put the link here, but if you do a search, you'll find it. There are a ton of groups out there, so put in your zip code and see if there are any events/groups near you that sound interesting. I've met lots of nice women and done a lot of activities through the last five years. You can participate or not participate in any activity depending on your situation.

I'd also look for some support through local faith communities. I used to do respite care through a local Catholic church (even though I'm not religious). I'd go and sit with an elderly man while his wife went to church. It was volunteer, so didn't cost the family anything.

Or get a home health aide in several days a week for a few hours so you can carve out some personal time. We ALL need that! Take care of your own emotional and physical health or you won't be in shape to care for your loved one(s).

Thanks, Whitesage! I didn't mean for my post to be so long-winded...sometimes we get started talking and it just comes pouring out.

Yes, I was very lonely when I was caring for my dad. I had church and some church activities. I volunteered twice a week just to get out of the house but I felt that I was pushing it just doing these things. My dad really shouldn't have been alone like he was when I volunteered but I had to do something, I was going insane. I kept in touch with friends by phone but I found that I had nothing to talk about and I didn't want to go on for an hour about my dad and caregiving but that was really all my life was. It was embarrassing. I made sure I kept up with current events just so I could have something to offer in a conversation.

I think caregiving and loneliness go hand in hand.

SusanA43 - No apologies necessary. It's therapeutic to get it out. Hang in there! We are not alone, even though it feels that way.

Yes, I asked this question myself about a month ago. I am caring for my husband who has had Alzheimer's for 9 years now. He is just now getting worse to the point where I am afraid to leave him alone. He needs help with clothing, dressing, bathing, brushing teeth, getting meals, cutting his food,etc,etc,etc. I mis getting away from him and being with my friends. I feel alone because although he loves me still, he doesn't talk and he can't express his feelings. Every once in a while he will take my hand and rub it. Or if we are listening to an old love song, he will say , "you and me." but since we don't talk, I miss that so much. And he used to help me do everything, but now he can't do anything. He is still strong and healthy aside from from Alzheimer's. I just miss my best friend who no longer can express this. I seem to go through highs and lows almost daily. I'll be feeling fine and then it hits me that here is another thing he can't do! Then I feel down. But I have to keep telling myself that I am lucky that he can still go to the bathroom himself. And again I know it won't be long until he loses this too. It is a tough road. I am leaning heavily on my faith, asking for daily help from Jesus. That always helps me. I have 5 daughters. You would think they could call me once in a while. But they don't. I guess they think I will ask them to come and help.

SusanA43 - you wrote MY life. I thought I was the only one going through this. I'm going to be 52 this year and I feel my life is over. I lost my husband and home because he could not accept the fact that I could not give up on my mother when she needed me -- the only one of her children who could help her. Now, it's been 8 years that she has come to live with me and I have given up so much. My sister and brother have actually told me, "better you than me." The females on my mothers side of the family have lived into their early 90s and her own grandmother lived to be 102. This gives me an idea that MY life is over. No one wants to deal with my mother's constant illnesses and shaky mental state. I do get angry at siblings and even her own sisters for not caring enough to call to check on her. To me, why bother with finding another mate when I have so much baggage!? It would not be fair to him. So --- this brings me to my point. I read a lot. I look at my mother and see her as an old lady who has no one but me and I feel blessed somehow that I have been charged by God to do this. It makes me feel better because I have hope that something will come out of this pain.

Cynche0911 -

I wish we could sit down and have a cup of coffee and compare notes - it sounds like our lives almost parallel each other.

My life, since the age of 13, has been in hospitals with the dying. I became an R.N., got a degree in counseling, etc. to continue the work.
I have found that care giving has become my life's work. I now care for my husband who suffers from Solvent Dementia.
I had 3 children, 2 are in Spirit only-miss their bodies so much but feel them in my heart, my Spirit-always, as I do my son who is 47 & simply will not talk to me? Both of my daughter's were disabled. One was disabled mentally & one was physically disabled.
I have found that now my husband is my teacher in so many ways. I am so grateful for the gifts of my life.
The one main thing I do now, is that I am willing to see everything differently
How the world changes when you see it differently.
BE GOOD TO YOU, FIRST....I can only speak from where I have & continue to walk.

I go to a Caregivers Support group and that helps a lot. I tell you that other than them, nobody understands what is like.

I am so glad that I found this topic. Yes, I feel very, very lonely. If it weren't for my furbabies I would go totally nuts. I feel like I am slowly losing my social skills, or have already lost them! My husband works out of town 5-6 days a week and is only home for a short period of time. Actually, it is good for him because he doesn't have to deal with what I go through. He was so good to give me breaks when he was home though and I really miss that. My daughter is too busy with her work and social time. Even when she does have a day to herself, she never offers to sit with Mom or ask me to go with her anywhere.......I have a friends who is dealing with the same thing that I am with dementia and her father is also in poor health. We used to compare notes all the time and it was very helpful and at least you didn't feel so alone, that someone out there was going through what you were, also. She comes from family where no one gets along, or only for a short time when they do, so she is always stressed and I have about completely lost touch with her. My cousin used to talk me through stuff, but she is too busy with her work now, so I have basically lost touch with the people I did communicate with.....I get very frustrated, aggrevated, lonesome and just have questions running through my mind all the time. Mom is 95 and her mind gets worse by the day, her health stays the same and mine seems to be on the decline. The doctor attributes it all to stress, but stress can cause some major things to go on with your body. I am trying to guard against it, but at the present it is just about impossible. It is tough when you read on Facebook about friends doing this and that and going here and there and you once did, but can no longer do so and no one even asks anymore..........My prayers to all of you who are caregivers and are going through the same experience as myself. I will keep checking back and saying prayers for all. Thanks for posting. At least I know I am not totally alone!

Hi All - thank you for your heartfelt posts. My heart goes out to each and every one of you. The stories may be different, but it seems the struggles and heartache is universal with all caregivers. What helps me the most is living in the moment each day. Sometimes an hour at a time. I know this is not permanent, but it has taken a toll on me psychologically and I feel I am losing the person who used to live in this body before my Mom's dementia. I am jealous of those who receive support from family and friends, but I think that scenario is very rare. For those like me, I am all my Mom has left. Husband is gone, older daughter is gone and son is not very helpful. I wish there was a way for all those in our situation could live nearby in some type of community to provide help and support. I think the only ones who truly know what we go through is living it everyday. God bless is all.....

a new med has calmed my husband down the last few days. I got to work in the yard a little yesterday and today. It made me feell so good.

Not lonely very often. I just look forward to the day I can retire and hopefully get my freedom back again (and a good night's sleep). At my age, I could care less about hooking up with anybody romantically ever again, didn't work out so well for me in the past. I do regret not having some kids but then again. I look around me these days and don't care much for most of what goes on anyway and don't envy too many people. I'm happy out in my yard and when I'm in my own kitchen cooking. And as a bible believer, I realize there's a world to come and that this life is temporary and thank God for it pretty often.

Caregiving is a very monastic lifestyle. You feel you have taken vows of poverty, chastity and obedience. There is redemption, much later.

pamstegman - your few words described caregiving so accurately! That's my life!!

I admire everyone on this thread. I will stress that I am not a caregiver yet but I can identify with a lot of you. I have little control over things since it is still my parents' house. I am lonely sometimes but I am also someone "who knows how to be by herself" in that I like to read, play on my computer and what I call " putter around". I don't have many friends but most of them have children of their own. I am childless by choice however I have a therapy dog who is the love of my life. i am also a crime survivor so sometimes I will choose solitude instead of human company which is not always the best choice for me, but it's usually the "safe" choice. Mia is a therapy dog and we volunteer at a local hospital as well as the university campus where I am a grad student. (classes are not everyday so that doesn't take me out of the house as much as I'd like.) Hoping to change that this summer. Caregivers who like animals: we talk about animal therapy visits for the elderly but I am a big proponent of therapy dogs/animals for EVERYONE!!! My volunteer organization - TDI - is wonderful - you can contact them directly for a dog visit - website is http://www.tdi-dog.org/Default.aspx - doesn't matter if the dog visit is for your or for your caregivee :). Never underestimate the therapeutic power of an animal. hope this is something you guys can use. thanks!

I too feel lonely sometimes because the work is overwelming but I don't want to complian. I just want to give back to my parents what they deserve because they gave me the care I needed when I was a child and when I became a young adult to the day I got married and still then they were there for me and my family. Today is my turn to say MOM/DAD don't worry I am here for you for as long as you need me. Caregiving is not easy but it is rewarding and if you do it from the heart you should feel good about it and have time for you. I sometimes get an adult sitter and I go out with my husband, or with my children, with friends just like my parents did when I was small. I owe my parents to right to care for them and I owe myself the right to care for me. God bless.

Miasmom1, you are certainly right about the dog. If it weren't for my cats, I would be totally nuts instead of half nuts!.......My Mom doesn't feel that way, she is very jealous of my inside cat and I believe when I am out of the house that she mistreats her, because for some reason she is scared when I come back in or if there is a sudden movement she is petrified, especially if my Mom moves. So that pretty much tells me that she has been "sworping" at her when I am out of sight......That cat is my therapy! Trust me, after 3 years of caregiving, my cats, I have 6, (I rescue kittys when they need a home), they are the best therapy ever. If you are lonesome, you might give it a try, I guarantee it will take your mind off of some of your problems, but not solve them, just help. Bless all of the caregivers everywhere!

Yes I feel lonely and I am not a caregiver. I'm at the age where someone should be caring for me[93]. However, I don't need the care. I live alone in an upstairs apt. Once a month I have someone who cleans, the rest of the month I take care of the place myself. I have friends and do a variety of activities but I want more. I have tried so hard to find some web site where I can communicate with others. I want to discuss different topics but I simply haven't been able to find a site. Perhaps there is someone out there who could give me some tips.

Hi Mollie90! as my father told me when I was in college, "find your passion." if you are religious and/or spiritual, maybe join a church? do you like music? what about a community choir? Someone on here suggested the website www.meetup.com. it's a great website that where people can start a group based on whatever they like, and you can join a group that's already established. Obviously you are computer literate, do you like computer games? I have one called Feeding Frenzy, it's awesome and completely mindless. Not sure who makes it but Apple made a similar application. You already know how I feel about animals ;) I also think many assisted living facilities offer activities where you don't need to be a resident to participate. For security/safety purposes I would suggest maybe starting local (like going to the webpage for your city - they usually have a page called Things To Do, Things of Interest or something like that.) Hope that is of some use to you!

Thanks Miasmom 1, but I don't think you understand what I want . I've already done the choir thing, I'm not looking for places to go. What I want is in depth conversations on the computer, I miss intersting talks, I know they are out there someplace if could only find them!