How is your social life impacted by caregiving?

yikes . i will never wear white again .

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.

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

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

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!

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. :)

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.

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.

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.

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

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.

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 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.

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.

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

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.

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.

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.

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

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.

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
-

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.

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.

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.

Wellspouse, you are so right. In the 9 years I've been dealing with my aged mother, only one friend from the old group remains and she lives out of town. I the last couple of years I have started to make new friends who are aware of my circumstances. I like them a lot better.

we finally after 34 years got two of my husband's siblings to take care of my mother in law for this trip the the specialists out of town. Last weekend we went away for two days together for the first time since, I can't remember that wasn't a funeral. Even weddings one of us has had to not go because of my MIL. I can't tell you how much I want to move. MOVE as far away from my mother in law as I can. She is supposed to be going away to stay with a son in a warmer climate for the winter, but this has been true every winter and only happened once--he immediately went 3,000 miles across country and told her that his great friends would "help them out" with their needs. She returned and had a heart attack the same week. In any case the point is we had a social life with friends for three whole days. It was amazing. We went to an art show (where no one knew us as the caretakers) we drank wine with friends and talked. We did go to a business meeting apart, but both went to the dinner. Our daughter from out of town visited and we didn't have to spend all the time with my MIL. It was amazing. Now we are back. Her heart valve isn't working right again so she has to return to her out of town docs, stay in a hotel there and be totally run around . I am telling you I am not doing it. My friends brother just had a debilitating stroke after taking care of his mother for 40 years, now the daughter in law is stuck with him and the MIL. Social life? Ha we put it on hold--it was always GOING to be our turn to have a life any minute. Everyone we knew told us either it was our choice, and implied that we got something out of it, either extra attention, martyrdom, or brownie points, or that we liked abuse? BS. We did it because no matter what they said, nobody DID anything about my inlaws but US. 34 years. We are broke from doing it and I just loved that small taste of a social life so much. I would do anything to keep it. I am willing to wait and see if the brother really does take her for the winter. She and her friend (she lives with also no driving, needs help etc) now one has SSI and medicaid and she has SS , pension and Medicare, so the brother will take every penny, and maybe this time he has incentive to take them. I just would sell everything and live in a cabin to be able to live how we did this week.

Wildjane60, I do so understand your situation. Those who say we get something out of this is out of their mind. I really don't see any good about these situations. Believe me, I'm doing it because no one else will. And those who would say that have never or will never be caregivers. We do it because we are human. And as far as friends go, yes I see that there's a transformation of my friends. My "friends" who have never been caregivers are falling off the chart as I cannot do things with them, and they do not understand. It's like playing in a whole new ball park. The damage it does to family relationships is astronomical. I can go down the list, but no need. Mother moved down to be near my brother and came crawling back is worse shape than she left and guess what ... it's my ball game again, so look out.

wow, so sad, it all sounds so similar. When my MIL came back she had a heart attack within a week, they never did any kind of care for her and I think they ate twinkies breakfast lunch and dinner.

I think that what does bother me most is that the same people who would never do it themselves are the first to say that people who do it, get something out of it for themselves, and it is some kind of scam. My god they wouldn't last a week, and have no intention of trying. They just like to rationalize it because they feel guilty I think.

Addendum to my last post - Mom has since been admitted into hospice, though in this area they do not have any separate facilities for residence, it is involved in home care, visiting nurse, nurse on 24 hour call, all sorts of things like oxygen and medications applicable to her medical condition, it has been a big relief, but what has helped me so far, and I can use in the future is they have volunteers who will come in and 'sit' with mom if I have something I want to do. We had our 50th class reunion last week, I nearly passed up the idea of attending but the 'sitter', a very nice older lady, came in and I was allowed a 'night out' (well, until about 10:30 anyway, when I called it quits 'cause I was tired), but I had a good time and did not have to worry about what was happening at home.

Wow, DT, thank you for letting us know. I'm so glad when I hear little blessings throughout all this. And to those who think we ask for this...... I'd like them to sit in our shoes for three days -- they are the most ignorant, self centered people I know for sure.