Why do the caregivers always become isolated from others?

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Why do the caregivers always become isolated from others?

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My mom is now 101 and lives with me full time. I had to stop working full time. She is going to a senior center 4 days a week, and I see a therapist and go to caregivers meetings and try to do “me” things. Would like to know why family and friends have disappeared from our lives, I feel alone, angry and very tired.

Burnout Family Caregiver Loneliness

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We're here! :)

Isn't it *odd*? Why *do* they stop asking, or calling, or even dropping in occasionally?

I don't have any answers. But I can tell you that I know which of my friends neighbours and family are 24 carat gold, because they are the ones who did not fall away, who turned up with cake, flowers or gin even though it must have been like visiting the Witch of Endor with a migraine, who were *there* even though there wasn't much anyone could do to help.

No allies at the caregivers' groups?

How long have you been caring full-time for your mother?

I know you shouldn't have to make the first move, but if there is anyone you especially miss and want to talk to - pick up the phone and say so!

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Deniseec,

I think one reason caregivers become isolated is because the people we care for aren't typically social due to infirmity, dementia, or just age. In many cases it is a lot of trouble and upheaval to get our loved ones out of the house so if we don't have to we tend not to.

Another reason may be because caregiving takes everything out of us. We give everything we've got to our loved one that we don't have anything left over for ourselves much less others like friends and family.

These are reasons why caregivers may become isolated from others. As to why your family and friends have disappeared from your life with your mom I can't say. Have you tried to maintain regular contact with them? You don't mention your mom's health. Does she have dementia or another illness that may make visits from friends and family uncomfortable? Sometimes people forget about the elderly even if they are family.

I'm glad you are seeing a counselor and try to do things for yourself but is it enough?

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I think that some of the feelings of isolation are the result of our own choices, for example leaving a job can cut off a huge opportunity to connect with other people and talk about things outside of caregiving. And then there are the logistical difficulties of actually being available to BE a friend, even if you have outside caregivers they are usually there on weekdays during normal working hours - it makes it challenging to plan get-togethers with friends who are still working. And family, well that can be complicated even without caregiving in the mix, but it is unrealistic to expect that a sibling who might have previously visited mom once a month (or less) will suddenly start visiting more often.

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I agree with all the posts above. I find myself feeling isolated as well, I think caregiving shows you who is a true friend and who is not. I have one friend that didn't like that I only had a two hour window to get together because I couldn't leave my mom long so she just told me she would see me after my mom's gone. My other friend insisted we still get together every other week, even if for only two hours. She's a true friend. Same with family members, some have disappeared but my brother shows up every Saturday to give me relief time.

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My stepmom and dad live in a very rural area and when my dad could not be left alone 24/7 she was homebound also and very isolated. I would visit them on weekends to give her a break - and she preferred to go out of town to a casino with a couple of friends.

When i was doing errands in their town - people would stop me and ask how they were. I started telling them my stepmom was feeling pretty isolated and would welcome a phone call or a visit. People started reaching out to her. This gave her confidence to reconnect with other people she missed. I think the isolation comes without us being aware until it is full bore and people do not want to intrude or do not know how to help - so do nothing.

Perhaps one of the first things you can do is reconnect and just let someone know you were thinking of them.

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Sister 2 told me several months after I moved in as Mom's live-in caregiver and apologized for not stepping by more often. She had lived with Mom for 5 years and did an amazing job despite having a job that worked long very hard hours. She said she didn't come by because she knew Mom was being well cared for. I was truly touched because I came to give my sisters a well deserved break from YEARS of hard work with Mom. Of course, after months I started having problems and had to ask for help.

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One reason is: We caregivers become Subject Matter Experts in topics most people don’t give a hang about. The care-recipient included!

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It is similar to being the first one in your friend group to have a child. Suddenly your life is about feeding schedules, naps, diapers and marking milestones, fears around leaving your babe with strangers at a daycare. If your friends are not yet at that stage, they are not interested. At the other end of life it is the opposite instead of marking milestones, you are marking stages of dementia, when incontinence starts, fears around leaving your LO with strangers.

Family dynamics play a huge role in whether or not family is available to help. My mother's partner of 25 years has been diagnosed with dementia. I will not help in his care in any way at all, including helping my mother care for him. My mother chose to have a relationship with him, not me. He has done monstrous things in the past and as far as I am concerned he can reap what he sowed, as can she for accepting his behaviour, (abusing my children and various peoples pets),

I have a dear friend who would never consider asking for help. As such it is up to her friends to try to determine when she needs help and how to best help her. Me, I will ask for help and I expect others to ask me for help when they need it. If I do not hear that help is needed, my first assumption is that everything is in hand.

As a friend I have a limit to how many times I am blown off before I stop calling. Yes, I know there may be an situation that needs attending immediately, but if I do not get a call back, text or email, why would I keep following up?

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I know,I care for my husband of 83, due to a pretty severe stroke 7 yrs ago. Only ones who helped were folks from our church, once in a while. But since then have moved closer to my family, they are of some help, especially moral support for the two of us. It's hard, I know. I don't know your situation, but you can call for help in the community to give yourself a break. In my situation, it is a little too expensive for me, luckily, I can make a hurry stop to drug store or grocery. I also rely on God's power to get me through the rough spots, it has done good so far. I go into another room, to watch tv, or read, or do whatever, if I get a brake in duties. I am always in ear shot of husband, most of the time. He isn't totally handicapped, but mostly. Walks with a walker, short term memory, frustrating for him, balance trouble in walking. But we still get him moving, everyday. It's a job and a half, let me tell you. I admire your efforts to do what you are doing for your mom. Strong woman. Hope you can find some kind of relief. God bless you.

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As far as friends go it became increasingly more difficult to get together.. It's not like you can just go out for dinner on a Saturday night! I personally had little free time and when I did I wanted to spend it with my husband (immediate family)..

As family goes it was "out of site out of mind". My siblings knew I was caring for Mom so they just went on with their lives.. And I didn't ask why?

It's been almost 2 years since my Mom passed and I saw my siblings Christmas time at my one helping sisters house. They all see each other often but I tend to still keep a distance... I'll never forget my years of caring for my Mom and I'll never forget their selfishness..

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Lots of reasons but here are a few that I found to be true.
1. Friends call up and ask if you want to go to the movie or out to dinner...You say no I can't I gotta take care of Mom. Pretty soon they stop calling and asking if you want to do something.
Solution...Get someone in one day a week for 4 or 5 hours and go out with your friends. Difficult because "no one will do what you do as well as you do" but you have to care for yourself!

2. They ask if there is anything they can do to help and you say....No that's ok I'm fine or we have what we need right now, thanks...So they stop asking...and you seethe wondering why no one helps out.
Solution...When someone calls and asks say..Gee that would be great, next time you are at the store could you pick up a bunch of bananas and a loaf of bread, and there is some soup on sale this week could you get a few cans for me?

3. When someone calls up to talk a bit and you say you are busy getting Mom lunch, or doing the wash. Pretty soon they stop calling to chat.
Solution....Sit down for a few minutes and chat. Then ask if they can come over for a visit. Make a cup of tea and enjoy a visit. Who knows Mom might like to see a new face as well and possibly have a nice chat with someone else.

Lastly realize that you can not do it all by yourself and that if you don't have help now you will need it at some point.
At some point you may have to start using equipment to move Mom from bed to chair. Maybe a Sit to Stand at first then a Hoyer Lift. If this is not something that you think is possible it might be time to consider placing her in an Assisted Living or Memory Care facility where her needs will be met and you can visit, enjoy the visit as a daughter not as a caregiver. And at that point you can begin to rebuild your life.

Another note...Your profile says you are caring for someone with dementia, probably Alzheimer's and you are caring for your Mom with general age related decline. If you are caring for 2 people this is a LOT!!! No wonder you feel isolated. If it is 2 people you are caring for is there any way that you can step back a bit from one or the other? Get other help. Think of a house being built, there are the workers, the electrition, the carpenters, the drywallers and in charge of all of them is the General Contractor. You should be the General Contractor and delegate.

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I have both an elderly, frail father and an adult son with a lifelong disability due to an anoxic brain injury. In my experience, most people, though at their core good and caring, don’t want to hear or know too much of what can be trying, hard situations. It’s like on some unconscious level they think it might be contagious. Get too close or hear too much and it might mess up your happy life. There are also people who want to fix the situation, and when there aren’t any easy fixes, they shy away feeling overwhelmed. It is isolating, you often have to do the reaching out, and be conscious not to talk too in detail about the caregiving. It’s a hard reality that there are few who really want to know all the gritty details, but it’s true. Accept people as they are, reach out and try to keep the isolation as minimized as possible

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What perceptive answers! I don't see anything that doesn't ring true.

I sometimes had phone lunch dates with a good friend. We'd both get our lunches ready and call at a designated time. She knew that I might get interrupted to attend to my husband, but that didn't happen often.

To overcome isolation in a caregiver situation often requires creativity, and most of us use up every ounce of creativity with our loved ones. Socializing can seem like one more problem to solve!

Deniseec63, have you talked with your therapist about this topic? It would be interesting to hear that perspective.

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I think three F explain part of it:

- Being with us is not FUN anymore.
- We are never FREE
- We are easily FORGETTABLE, as anyone that cannot be part of life as people “like” life to be...until that day, the day!, when they become either caregivers or subjects of caregiving.

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Hi there,
I saw this and yes I’ve thought the same thing. My mom is still living on her own with my brother but I’m just 5 miles away. She has the beginnings but cstays silent and is in denial.
I have seen a counselor myself but felt I was talking to a brick wall.
I feel for you and yes you hit it on the nail of what I feel. The friends I’ve even known for years, don’t call or anything anymore. They know like you about your mom, yet I always tried to talk about other things and it’s like they left! Then for myself I go.. “ what did I do wrong?” Hurts your heart. Good question and bless you.

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Yeah, everybody seems on the mark here. Part of it for me was just not being available on the spur of the moment anymore, so friends eventually gave up inviting me out. Part of it was me not being the one to keep in touch or return their efforts to stay in touch, and even pushing people away a bit. And part of it was the unhappiness and overwhelm I felt, maybe some depression, in the beginning....just something some people probably didn't want to be around (and again, pushing them away). Plus I maintained a :front" on Facebook for the longest time - posting funny things and interesting articles, even commenting on other people's posts - so friends assumed I was okay, just busy.

I don't want to say "now I know who my friends are," because I DID do some of the pushing away, or at least lack of relationship maintenance. But for sure now I do know the ones who will never give up on me!

Lately, I have been making an effort to get back in touch with friends I put on the back burner, and I've been delighted to find they are still happy to be right there for me.

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I know with me, it was me who separated from my friends and isolated myself. I just thought that my friends became time consuming for me and I felt my interests were different now. I know from my caregiver meetings,,,this is a common trait, the teacher even said, prepare to not have friends anymore because you will give them up and she was right.

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I was never a social type in all my life. I had one or two good friends, various friends at various times. The kind of friendships you read about in novels, and see on tv and in movies, those are idealized to provoke warm-n-cozy 'awwww!' feelings. In real life, a troop of good buddies from childhood, from school, from working days - they don't stay a troop of good buddies. In my case, I currently have a couple of good friends from years ago, but I never dreamed of insisting they get in on the ghastly caregiving schedule. I mostly talked to them on the phone and met them for an occasional lunch, when I had a hired caregiver on the job. Otherwise, there was no one. No one else, but me. Mom had 8 siblings, all long deceased, their children moved away. My brother was supportive as he could be but lived 2000 miles away and could only visit once a year. Mom's friends all died, were in nursing homes themselves, moved, had their own lives going on if still with it and ambulatory. Neighbors? same, died or moved. There was literally not one family on the block I knew any more, and what neighbors were there were 20 year old renters, druggies, troublemakers. .... The only thing I can suggest is hiring part-time help so you have a few precious hours to yourself a day, or a week. After a while, it will get to be too much for you to bear any longer. My own health was endangered greatly. Start looking around for information on Medicaid, assisted living, board-and-care places, or nursing homes. You don't want to collapse with a 'cardiac event' and be unable to even comb your own hair from exhaustion, and also start to look around. (in that case, adult protective should step in.) You can't do it all yourself......As for people avoiding you, it may be different from my case where they were all moved, dead, disabled, or got their own stuff going on, and so it is up to you to just call them. Call and talk to them, if nothing else. Because no one is going to want to come and see you. There is really not much they feel they can do to help, other than bringing a few groceries or a bag of burgers, and it makes them nervous sitting there in a smelly house, and nothing much to talk about, and observing the strain you are under. It's like visiting in a hospital, most people I haves known under the age of 60 avoid visiting someone in a hospital, jail, or other facility like the plague. It's just the way it is. They may very well feel guilty about avoidance and beat themselves up for it, not that it helps you in any way.

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It doesn't help much, and as my hubby progresses in his Alzheimer's is may not help out at all.

Right now, I use Facebook and messaging to keep in touch with people I care about. I find I have to really work at keeping in touch with people who don't do either. My husband's best friend and his only remaining sibling, don't call us, so I call them. I am also lucky enough today to be able to get out. I take advantage of it now, because I can see the day coming when I too will probably be shut in with my husband.

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@ Teaching123...
Seeing a counselor, therapist is like dating.
You may have to go through a few "frogs" before you find a "prince" of a therapist.
Do not let an experience with 1 therapist stop you from looking for another. If you have to ask your doctor for another referral to someone else.

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My grand daughter used to say, "Grandma, why do you say hello to strangers, it is so embarrassing!"
Today, I am visiting the dogs at the shelter, feeding them cookies, and talking to them.

Having a hard time getting dressed for that because I am so busy, I hurt, and had to lay down for a minute. It is cold out, but I have to do it. I have to get out, it is important.

Looking out the front window and seeing people does not count as socializing.

I am going now.

.
.
.

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Sendhelp, absolutely great that you understand the relevance of getting up and getting out! Even despite yourself and the elements...

That’ll do wonders for you, even if you come back still hurting, your mind will receive a free therapy session just through the interaction with other people and lovely doggies.

As long as your mind is healthy you will be able to deal better with all the rest!

God bless you!!

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Your answer will vary for a variety of reasons-
#1 Did the caregiver have to move away from their family? (a yes for me)
#2 All of the elder's friends have died.
#3 The caregiving usually falls on one person.
#4 If the caregiver had to leave their home and move in with their LO, they will not know many people in their LO's town.

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Kbuser, I truly sympathize and for everybody else who are in this same position.

I too see a therapist for guilt, depression, anxiety and so many other reasons; mostly from my disability.

Part of my guilt and depression comes from not being able to take care of my Mother. The family member who claims to care for Mom, having "ME" time is not an issue.

This family member can't find the time to do the job of caring for Mom. I go on Facebook periodically to see what adventure this family member is on with said children/grandchildren.

I'm currently trying to find ways to care and feed my parents while said family member eats out, goes on weekend trips, comes home from work, sleeps, goes back to work and weekends spent away from Mom's house where this family member has been living ren't free for 10+ yrs!!

I'm doing all of this living out of State. There are things going on and when I can get things arranged, I'll be caring for them out of State, BUT with the help of one of Mom's brothers.

We're at the opposite ends of the spectrum at this point in time, but I'm going to do everything in my power to take care of Mom and as hands on as possible.

Although I won't technically be in your exact position due to distance, I'll still feel separated from the world.

Now, have any of you checked State agencies that provide Respite time? Some of these agencies provide this service for free or a minimal cost.

My grandmother used this which was provided through Medicare when she was taking care of grandpa at home dying from cancer. It helped to keep her sane.

Bless all of you for taking care of your parent(s).

Yes, a true friend would either spend time with you in the home or help provide you with some means of respite i.e. Church women's league to help.

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I was reading this thread this morning and made a point to come back to it as it is so relevant.
I care for my husband and have caregivers 4 mornings a week to get him up, bathed and dressed. This does give me a bit of gym time.
But -- I feel I have nothing to talk about except my situation, Medicare rules and regulations, caregiving and my current challenge with the situation.

I have a group of retiree friends who lunch monthly. I no longer attend these lunches but was asked to a weekend event of a special member. I was excited to get to see everyone. After the gathering, and looking back, I feel that I had nothing to add to the conversation, nothing currently in common with these people and feel like I rained on their parade.
I will probably not maintain my relationship with the group -- just one or two members.

On the other hand, I have a friend who "has been there" and feel I can have an honest conversation with. I can ask the hard questions and make the inappropiate comments about being in this situation.

I understand the pulling away from old friends -- it is way too hard to keep up a happy-go-lucky front -- and truthfully, we don't have much in common in our lives right now. It is very hard to sit there and be asked how I am and just say "fine" --

Re: help -- only one neighbor has offered help. Others watch me struggling to clean up leaves and never offer even their kids help. I hope I am becoming a better person.

This is a hard road, one we never asked for -- and most don't even want to think about being in our place.

So -- I hang with my reading friends -- we can talk about books; my gardening friends -- we can talk about this year's plantings; and my caregiver friends-- we can talk about our lives.

My hear goes out to every one of you --

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In re-reading my post, I'm giving a fairly negative outlook. I'm sorry if it is depressing. You certainly deserve more from your friends.

At this time in my life, I am assessing what a "friend" really means. And I think the whole "friendship" thing is a bit over-rated.

To me, a friend is someone who gives you their time when you need it (I just eliminated 70% of my "friends"), makes an effort to stay in contact (eliminated another 20%) and stick with you through hard or boring times (eliminated another 9%). So, I am left with the 1% who I know I can count on. She is 91 years old. I was her husband's nurse for 2 years before he died and we formed a great friendship. I just had lunch with her on Monday.

I'm truly disappointed in the other 99%. Especially since I stuck with THEM through their hard and boring times. I live in Tijuana, so I'm not able to physically visit with them. One friend of 25 years for no reason (known to me) refused my phone calls for 3 months. I finally gave up. We haven't talked for 5 years. She called and left a message a few months ago, hoping to get in touch. Phooey! I could have died for all she knew or cared. I didn't call back and don't want a friend who abandoned me.

Another friend, this time a BFF (best friend forever) threw me aside when she got a new man in her life. Again, this one wouldn't answer my calls for many weeks (honeymoon period, I guess). She called back after a year (reality set in?) . Again, Phooey! No girlfriend throws you away for a man.

A "friend" from grade school (49 years) and I were so close. I was her son's God-mother. I talk to her once a year. She says, "I love you, Sue" when we hang up. I just about puke when I say it back. I don't love her. I don't even KNOW her. She thinks we're close. (?)

Another friend from work didn't like the fact I married someone of Mexican decent, so she cut me out of her life. But 4 years later she called a mutual acquaintance asking for my phone number. I told the acquaintance to tell her I died. She told her, "Sue told me to tell you she died". (hahaha) I don't want to be her friend because I'm not prejudiced.
At work, I had to hear about all her lovers (many at the same time!) while she was still married. She asked me for a threesome!!!! You know why I'm not HER friend anymore.

Friends are over-rated. Friends disappear because they have little or nothing in common with you. They would rather not be bothered in the hard times. They give up if you don't serve their needs. They don't bother because you are no longer like them-self centered. What you are doing is self-sacrificing. Maybe they've got a guilty conscience.

In your case, I would reach out to those who could assist you. Don't try to be a hero and do it all yourself. Tell them you need help.

I'm sorry that people can be so intolerant and self absorbed. I've learned to live without them. People will always disappoint you.
They certainly don't fall under the dictionary explanation-"One who is attached to another by respect or affection". Those people are hard to come by.

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I remember wanting to spend time with my best friend since I was 6 years old. She is one year younger than me. When she had a child, she took her with her every where. I understand that. But, I wanted to spend time with her and talk and maybe go to a movie. Not every day, just once in a while. But, she brought her small child with her every time. So, there was no conversation that didn't involve the daughter. Eventually, I stopped trying to get together. After reading your posts here, I wish I had continued to try to stay close and that I wish I would have realized that the situation was temporary, and that bringing her small child with her was probably the only way she could have done anything with anyone. We are still good friends, but I look back at that time and wish I had offered to babysit so she could have some free time.

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The reason friends etc fall away is that you have no time for them so after a while they stop calling - when your time is spent doing things for a loved one there's not a lot left over - you probably talk mainly about the effort of care of LO - when I say 'you' I mean 'all of us' because it seems to be nearly universal

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The sad fact is, you are the one who isolated yourself. To have a friend you have to be a friend and your current situation probably doesn't allow you enough time for that.

Grandma1954 made a lot of good points. If you are never available to do anything (and I am not talking big plans, just lunch, a movie or a quick phone call) people will stop calling. Or even worse, you make plans that you constantly cancel. People will stop calling. They will feel they are bothering you.

If someone asks if you need help, accept it. You can't turn them down time after time then get mad that they stopped asking. My son used to offer to help with snow shoveling with his step father who always turned him down. After awhile the kid stopped offering and my husband was indignant that no one offered help. I chewed him out over that. If you turn people away each and every time they will get the hint.

If you only topic of conversation is care giving that will get old too. For a year I was consumed by a bitter divorce and it was all I talked about. After awhile I could see my friends were getting tired of hearing about it.

My best friend moved away a long time ago. She would visit the area on occasion and I would get a lunch out with her. It wasn't much but I was happy with it. Then she didn't have the time to go to lunch with me. I tried to keep in contact but she made little to no effort. And the life log friendship faded.

My point is, your friends are still there, you just aren't. Try reaching out to them instead of waiting for them to come to you.

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Lkdrymom,

I understand your point, very valid in many cases. But let’s remember the difference between a caregiver and the rest when it comes to socializing (assuming you actually get to socialize):

When we are kids we all play and talk about games -dolls in my time!-, school,etc.

When we get to teenage years we talk about boys, clothes, lipstick, etc (other things if it’s a boy).

When older we talk about Universities, what you want to become in life, a Car you want..maybe boys again! Lol

When in your twenties or thirties we talk about getting married, planning weddings, our career, how excited we are about life.

Later in life we talk about family, about kids, about husbands, about how we don’t have time for anything anymore, about fun vacations, etc.

...Then, some of us become caregivers. The rest of the world keeps talking about kids, or grandchildren, about husbands, about vacation, about life. We don’t get to travel, don’t get to go to get coffee sometimes! We just go to the supermarket, and most of the time interact with the person we are caring for.

We lose common ground with the rest. We really don’t have much to talk about, because our news are not the type others enjoy or UNDERSTAND.

Caregiving is by default an isolating task, it’s simply the truth. And although I agree we need to make an effort to keep ourselves as part of the world for our own good, it’s also true that those in the world that really care about us will understand the situation we are in. The rest, actually can become noise! Like a burden to pretend we are part of a daily life we’re not because our daily life is so different!

Yes we need to make an effort to get a break from the situation we live in, but it’s not our conscious decision to become isolated. It simply comes with the territory.

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Why do the caregivers always become isolated from others?

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