How is your social life impacted by caregiving?

In my experience as a spousal caregiver, and in talking to other Well Spouse™ Association (http://wellkspouse.org) members, it has become clear that the gradual drifting away of old friends happens to everyone, spousal in particular, or family caregivers.
There is however, a partial "fix" that works for some -- if you manage to make new friends, who don't have a "history" of knowing you before you became a caregiver, they are the ones who will stick with you, and often lend some support.

What is "social life"? I moved back here from CA where I had a very satisfactory one but life for me in the Midwest is another story. I have had no time to take classes (which I would love to do) or anything to make new friends, I had nothing in common with my co-workers before I was forced into retirement, then mom's health started to decline, now that I am a 24/7 caregiver who has time for social? The most I do is reserve a couple hours two days a week to work out with a personal trainer, that is MY time, and I fight tooth and nail to keep it. He is my only luxury and my only good friend here in town. We have never been churchy people, some people make their frinds there.

sosad - detox? I have been severely lax in my toxing and have much catching up to do.

I envy those whose Mom's are/were their best friends - those whose loved and were loved so enormously that the pain of loss is or will be equally as large and all-consuming. This is not my story. All my life I've suffered from "mother-envy".
Still, my grief is my grief. Mom has been in my life for more than five decades. The waiting and watching coupled with a hundred wishes of what could have been - should have been - gnaw at me as much at 55 as they did at 16.

i agree with the halfway house because i'm sure there's going to be some PTSD going on there --- I'm already thinking of the therapy that may be needed when caregiving is over, plus perhaps a detoxing room for those of us who have had a fair share of wine in the evenings, ha ha
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jeanne I don't know. I think you'd have to move out and make room for someone else who needed the space - so maybe we'd need a "halfway houe" for recovering caregivers.

okay -- i think this is a great idea. This caregiving is more than one can handle, which is what usually happens. I'm in the process of tag teaming with another family and am discussing the needs. I am a lone caregiver working full time and totally stressed out and lonely. I'm thinking if we can share these things, you know, i take your Kid and you take mine for an afternoon so they will have socialization -- i think that's the ticket. I just left hospital after answering all the standard questions, to come and get some work done til I have to go back. tag teaming may be the answer. thank you all

You know, this communal caregiving idea really is appealing. I'm taking it seriously enough to think of practical considerations. If I sold my house and moved there and take care of my loved one and take part in the community, what happens to me when my loved one dies in, let's just say, 3 years? Maybe this idea would work best as part of a continuous care community. Interesting idea.

That sounds great to me. I have actually thought of a similar community. A multiage community where much of the life is shared. I lived in many communes as a twenty something and know exactly what doesn't work (ha ha) but I think we did learn how to live in a real meaningful community, but most of us in our position are too overwhelmed to put it together. I feel personally after dealing with my mother, my father, my father in law, my husband's disability with his kidneys and now my daughter who is disabled and my mother in law, that I will be dead long before I get a chance to try. My parents had kids late and so did we so, I am already old and sick enough. I am not sure if I am the caregiver or the care needer. I know I need more care than I am getting.

I know right? We have plenty of senior communities. Why not caregiver communities?

It would be a 'collective community' - perhaps duplex type housing situations so the caregiver and elder could be as close together as they desired by simply opening the door (soundproof door and walls would be required), and all the housing would connect to a 'common area' where all could gather to eat, socialze, watch movies, play cards, pool, dance - whatever. Picture a community where the 'common area' forms the center, and the housing spirals out from it in a big circle with green space and trees in between. Anyone wanting or needing to socilaze need simply go outside or to the commons. Anyone wanting to be left alone would not. Perhaps a porchlight that would be green if you wanted company, red if you did not, and perhaps a blinking red if you needed help?

All community members would have to meet a certain criteria (perhaps age, a certain percentage of time required for caregiving, income) and most importantly, would have to agree to community rules (a certain number of hours per week or month in service to others within the community - things like sitting with another elder for a weekend (always in 2's so no caregiver is overwhelmed), driving for someone who can't, or teaching a class - that sort of thing.

I realize this sounds like 'pie in the sky' (I am sitting vigil with my mother and sorely lacking in sleep), but I like the idea of it. If it takes a village to raise a child, a village can also come together to lift up the weary caregiver -whose efforts keep our vunerable elders off the government dole in droves.

@mariesmom.... That is such a nice thought!

Those of us with absent friends and detached family need a very, very, very big house where we can live and care for our elders together with love and support for one another as a very, very, very big community. Someone call Oprah.

I am here, 24 hours a day 7 days a week and its been this way for a very long time (and I'm not talking weeks or even months, the last time I was out it was when we all went to a family members house for 2 hours last Christmas). My life completely revolves around being here to watch over and care for my mother. I dont get to go anywhere and I get no breaks unless I am sick to the point of being unable to get out of bed. When that happens my husband has to call off work until I'm functional again. She has other children but they do not help in any way, shape or form. I have reached out in every way that I possibly can for help, to every one and every place that I possibly can. So as for a social life, mine is a faded memory.

Social life what is that? I have not had a friend over since mom moved in with us. almost one year now. she does not understand when someone comes over she thinks they are her to see her. so its just not worth it. I cant go anywhere for any length of time, even if my husband or son is at home. I am at a loss as to how to handle her sometimes. this disease is slowly destroying all of us.Dementia I hate you!

I can sure relate to these comments. My husband and I try to slip out in the mornings. Mum doesn't wake up til 10 or 11 so we run to the store early and work out in the yard in the mornings. We used to take my mom to church with us, but that got out of hand. My mom is a drama queen, while she walks just fine at home, usually without her cane, we get her to church and she can't stand up, needs help to get into church, etc. One time, we had all started to the door, I turned around and some ladies were holding onto my mother because her "vertigo" was just ;terrible and she almost fell down. BS Her vertigo only kicks in if she has an audience. It is embarrassing to say the least. If we have the smallest of issues at home, mother feels it's her place to ask for prayers at church. We have finally stopped going and just encourage her to go with her friend. She did for a short while, but has stopped. We've tried going to another church, but she wants to go with us. We did manage to take a 2 day trip. We asked our daughter, as well as members of the church to check in on mom while we were gone. It worked out great! We spoke of doing it again, but no sooner did we mention it, than mom has been sick ever since, stomach problems and back pain, but "she'll be okay, don't worry about her". Oh boy.

it is important to find time and someone to sit with your loved one. our life has changed. we were empty nesters and now we have mama living with us who is totally dependant. It has altered our lives but we are enjoying the moments with her. It can be frustrating not to have total freedom but my husband and i are making it work

ha ha haha .My social life is sitting home alone sick while my husband cares for his elderly mother , spending all his time and money making sure she is okay. I have no car and live in a rural area.He traded our second car for a ride to the rental car agency to take his mom to a rehab. All it needed was a $500 repair, and he didn't even ask me.

I'm taking a foreign language class and 3 of us have family problems waiting for us at home. We have a lot of fun in class and avoid talking about family by mutual agreement. The class is a relief for all of us and we don't want to spoil it by airing our grievances.

Consequently I have stopped talking about my mother to anyone except my support group. She was just taking up too much of my life. It's another way I set boundaries.

Actually, there are lots of people in the same situation. It helps to talk about it and often I find that people at church, work, etc. are pretty sympathetic. Younger folks might not have dealt with it much, but us middle agers either have or are going to go through it with our parents. I also try to listen to others that talk about their difficulties. I may not be able to fix it but it helps people for someone to listen to them. I talked to the minister and secretaries at my Dad
s church. They spread the word that he needed help and his friends there take him to church and would just come visit with him.

What is a social life? It is doubly hard if you have health problems since what little energy you have is taken up for looking after a household, appointments, etc. I talk to myself a lot. :)

You find out your real friends when you are in this situation. We have been slowly "uninvited" by our group and the funny thing is they have already been through this (parents now dead). When this is over, we will opt for the friends who have stood by our side.

I'm with mom 24/7 - afraid to leave the house. Who cares about those fly by night friends....I love my mom.
When I do go to the grocery, I am always talking to everyone....guess I need some adult conservation. My husband is the quiet. type. I've always been a "free spirit" - this is just a calling I'm going through and I will be a better person for knowing I am loving and caring for the person who has loved me the most!

Social life? Hmm... social life ... oh yeah, I think I might have had one of those in the far distant past ...

First of all, don't give up! I know it is easy for me to say, but there are solutions. My first taste of isolation occurred when I had my one child at 37, and he developed several illnesses.We had to stay home a great deal to build up his immune system. Most friends were not sympathetic when we couldn't
go to parties, etc, but I leaned a great deal on several older people who gave me respite time and good advice as well as love. Things did get better, but my life changed again when I became the main caregiver for parents at a young age. I don't know if this will help, but I learned to stop looking for "normal" and created my own group of friends that ranged from young to old. I developed interests that could be interwoven with my parents, new friends, and true friends. In many countries, including an elderly person in your life is considered an honor as well as a normal part of life. It is hard, but so is life. Get someone to help you find some free time and meet people you can relate to. We are out there. Anyway, as you build your life, don't you feel that it is important to fill your life with people who are as caring as you are? You deserve it.! Best wishes. Rebecca

What social life? With working full-time and visiting with my mother, who will soon be living in our home, I don't really have a social life. I agree that friends just don't get it unless they have been in our shoes. I try to still do some things but its difficult. I have no family to rely on to visit my mom. I am party of one. Very depressing and I never thought my life would become this way. I am eligible to retire but refuse to as for now my career is a good thing for me. I am not an envious person by nature but do have to admit when I see others enjoying the retirement they have earned and travel and have fun, I feel nothing but sad.

yikes . i will never wear white again .

mariesmom,

If you wore a "pretty white dress" at that time of the month, then I'm betting that back then you had never heard the "Pirate in a Red Shirt" joke.

i dont go anywhere , i just have my own pity party in my backyard with bonfire and beer and 4 wheelin around the yard , bet the neighbors are shakin thie r head thinkin we have lost our mind .
i love my back yard .....

I don't think most people intend to be cruel - indifferent, yes - self-involved, yes. But it still hurts.

I knew a women whose adult son was in an accident that left him a quadraplegic. I wasn't among the first at the hospital - but I was among the few who called or visited every week, sought out ways to be of use, took food, washed dishes, provided transport to and from th hospital, even arranged a room at my expense for her out of town whre he w having treatment. Mostly i always answered her calls, many times late at night when she'd had one too many, and spent hours on the phone just listening and offering solace..

Time passed. Her son was released - after a year in hospital - and went off to a place out of state to live. I still kept in touch with her, and when Mom came and I soon found myself 'shut in' I let her know my situation, and how I would love to get out for a drink or a lunch.

3 times I called her. 3 times she said she wanted to get together and 3 times she never called me back. I see on her FB page that she is off on this cruise or that vacation, lost a great deal of weight, got a new job she loved, blah blah blah.

I'd like to believe that her indifference to me is because she knows all too well what its like to have your whole life revolve around a hospital bed and bodily functions and whether you want to or not you always have to be there. In her darkest hours she said more than once it would be easier if her son had died. So maybe she avoids me because I am a reminder of those dark hours and she wants only to embrace the light now.

I get it.

But even if 'friends' avoid us, wouldn't it be wonderful if they sent over a funny card, or a pizza, or left a bottle of wine on the doorstep? Of course I can't even get an email response from absent brothers after informing them days ago that their mother was in hospice, so I guess I expect too much.

Hmmm . . .time to lighten up. How about a most embarrasing moment? Let have a contest!

I worked within the court system, and every Friday we had huge crowds in the courtroom of people being arraigned and lots of lawyers. My job had me up front at the defense attorney tables, and back then women appearing 'before the bar' were required to wear a suit or dress, hose and heels (it was the 80's). That day I wore a white dress, and after sitting for a time while we were waiting for the judge, I'd gotten up to speak to someone in the audience.

A short moment later my boss, a very dignified, quiet man - an elder in his church - grabbed me from behind by both my shoulders. WTF!

He whispered urgently. "Let's get out of her. Walk!" and standing as close behind me as Cary Grant stood to Katherine Hepburn in some old movie whose name I can't remember after she had inadvertently ripped off half her gown, he lock-stepped me through the crowd, out the doors through the overflow in the hall, and to the door of the ladies bathroom.

You guessed it. I'd had a menstrual accident big as day on the rear end of my pretty white dress. He returned (after the arraignment) with a raincoat borrowed from the judge's secretary, which I wore from the courthouse and home to change.

The only thing that would have made this more embarrassing was being teased about it - but it never happened. Apparently no one else had noticed - he got me out of there before they did, and he never spoke it either.

Ok - whose got one? lets hear them!

ya sosad. It hurt my feelings.

misunderstood 10 -- i just re-read your post -- that sure was an "ouch" by your friends --- so terribly insensitve, right????? gees

Yes, actually I have started a card night once a week either saturday night or friday night and that seems to work the best. That's something mom can do and we do enjoy it also. thank you all,,,, got to go.