How do you deal with caregiver isolation?

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How do you deal with caregiver isolation?

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In my own case, my network is in my former city. I make efforts to keep in touch with my friends, but it’s painful for me to hear about all of the fun activities that they are continuing to partake in while I have been dealing with Mom here (this tends to intensify my feelings of isolation).

I am planning to return to my former city when the timing is better to list and sell (currently am in a buyer’s market).

Because I put so much energy into caregiving in this city over the last 10 years, my friendships are arms-length and ‘thin’ here. I often felt very isolated during my caregiving marathon and continue to feel that way now after it’s ended — it’s terrible for my mental health.

I am wondering how others on this forum deal with the sense of isolation that seems to be an inevitable part of caregiving. I truly want to do everything that I can to help myself, and know that I need to ‘re-buffer’ myself.

Burnout Depression Mental Health Relationships

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Honestly, I prefer my own company to some of these same age single women ..I find them mostly to be bitter and angry. I always did things with my mother and now it’s not the same since I’m her caregiver…even though she’s in nursing home..I try to tell her what I did during the day and always ask if she had a nice day. Most of the time I tell her I’m overwhelmed with everything…the house, bills, nursing home screwups, etc. Sometimes she’ll say she’ll help me..nice and comforting to hear but she can’t do anything to help me with anything anymore..she say just handle one thing at a time. So I tell her I will always need her ..& really..nobody else will or come close to being a friend..that’s just how it is.

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Reply to CaregiverL

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You are absolutely right. I totally enjoyed reading your article. I can totally relate. Thank you for sharing. It really touched my heart.

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i follow creators on social media and post in their forums. it’s mostly one-way, but it does give the illusion of friends. and frankly, for me that’s enough bec i do not have the energy to reach out / sustain irl friendships.

i’m in a couple of group chats with crafty acquaintances that i see once a month, and that’s good, too.

i have 5 cats and currently 3 foster kittens. once the kittens get adopted, i might foster a dog.

i do have a long distance = virtual [ which helps me bec she's ‘here’ and ofc no travel. ] therapist, but mostly we discuss my own medical struggles, not dad’s.

for now, it works.

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Reply to eridanis

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I have hope that you can find really a meaningful, good supportive network of friends and join some community events or try reaching out to a caregiver support group locally. It sounds like you this sense of isolation is a decade in the making and will take time to build a life of your own where you are now. I think it is easier said than done but finding ways to create friendship circles beyond one place or another is one of the options we now have in the digital age. Many communities have all kinds of events including AARP and Parkinson's or Alzheimer foundations and other groups aligned more to your personal interests, not just online. People do a thing now called "watch parties" and virtual events that friends can participate in and share an experience from a distance.

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Reply to Anniemc

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I am wondering, "Why you have not moved the one you care for closer to you?" You obviously have your friend groups -n and support - where your home is currently and not near the person you care for. Maybe consider how you can move your cared for person near you and sell his/her home instead to help cover their costs.

If you insist on uprooting your life and starting in a new city, start making connections in this place where your cared-for person lives. Try local faith communities, organized clubs/groups that already meet and that you have interests in, look online on Facebook or other social media platforms, go to a class on something that interests you through local recreation centers and local colleges... Try to achieve a balance that makes you feel connected - online and/or in-person.

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Reply to Taarna

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Even as a paid caregiver, I struggle with this especially with challenging cases that make time drag on and difficult.

I'm taking some time off this week after waiting for almost an entire hour for someone that never came to open the door. I sat on this person's porch for the entire time while waiting for the agency to make contact. I made a promise to myself that I'm incorporating hobbies and movies into my life and getting healthy again.

This summer has been sort of up in the air. One of my clients has been ill and in the hospital for the last two weeks. So, I've been bouncing around on cases and have had a couple of cancelations after showing up for work or before I leave my apartment. Trust me, I know. This will wear you out if you don't keep up with your life. Also, I understand about not wanting to be around a support group discussing what you want to get away from. Maybe, hiring someone for about four hours so that you can get a mental break. It makes a big difference.

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Reply to Scampie1

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@Scampie

I'm sorry to hear that you had to wait for so long. Don't do that again. Never wait longer than 15 minutes. Call the agency if no one answers, wait the 15 minutes, then leave.

If the client is playing games and won't let you in, that's not your problem. That's the agency's problem, the client's problem, and/or the problem of whoever is responsible for them. It is not your problem, Scampie and you should not be expected to deal with it.

You don't have to sit outside a client's house for an hour because your boss or supervisor can't handle the situation in a timely and professional manner.

If a client won't let one of my caregivers into the home, they are to call me immediately. Then stick around for 15 minutes trying. If they can't get in, they are instructed to leave. The client is billed for the full time unless there's an actual emergency or service was cancelled for the day. If the caregiver gets in after 15 minutes of trying, they receive half (1/2) an hour's pay more and the client is billed extra for the time. If a client wants to play this game, they pay for it and the caregiver gets paid for it too.

If a caregiver can't get into a client's house because of ice and snow not being adequately cleared and salted/sanded, they are not to even try. I will not risk a caregiver getting injured because the homeowner or landlord doesn't take responsibility to make sure there is parking for the caregiver and safe entry into the home. The client will be billed half (1/2) amount for their regularly scheduled service.

Truly, I wish you could show your agency how a reputable establishment treats their people.

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Thanks for sharing this, your thoughts are clear and all of the responses I have read so far have elements of application for you. I am taking care of my wife of 44 years, we are 67 years old and she is late stage 6 Alzheimer's. I can't tell you how many times I have considered support groups, but somehow they don't appeal to me because I don't want to be in a group with folks sharing about the things that we all want to get away from. Why would I want to open up in a group of people when all I want to do is have a simple conversation about life in general? Phone conversations help me, connecting with people and relatives we have not seen in a long time. We have been reaching way back to college and high school friends and talking about the good ol' days. Of course, lamenting the present situation is important. I believe that it is important to lament, to think deeply about life, to consider what really is important in the long run. I can't help but think about our situations with purpose, that maybe you and I are in these situations for some lofty reason that we cannot discern right now. Later in life it may be revealed. Mentally I am broken, broken enough to care enough for another person so that their life might be tolerable. If I am not broken, we both suffer. I started thinking about solitude and its purpose. I bought a couple of books about solitude and just finished one today. The essence of the book was that solitude plays an important role in the lives of creative, fulfilled individuals. Some of the best art, music, and literature in history came from people who lived solitary lives and at times suffering lives. I don't know if any of this helps, but it has helped me to write down my thoughts and I sincerely hope that you continue with inner strength on your journey and that you grow in your faith and understanding about life.

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Reply to sammyg

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sammyg, thank you so much for your kind, considered, and insightful response. I like what you say about thinking deeply about life; also, that the purpose of all that we have struggled with may later be revealed.

Hoping that that you also continue to cultivate meaningful connections with relatives and old friends.

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First off-you’re not alone. Caregiving is a demanding job especially if it’s just you. My brother and I care for our Mom (and we have 3 other siblings!) I am still trying to find the “me” time as well. I have joined a counseling center. that helps me realize so many of us are in the same boat. It can be so overwhelming. But I’m beginning to look into respite care even if just for a couple of hours a week. I’m sorry you are having such a difficult time. I don’t have answers…but look into help from your city/State. I found some programs that are free. They offer like adult day care/meals/things like that. Good luck to you. Breathe. God bless

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Reply to stressedmess

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Thanks so much. I’m glad that you joined a counselling centre. Respite care is a brilliant idea.

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Check out Jesus The Christ. I love Him.

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Reply to NewOnAnOldRoad

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Jesus Christ is important to Christians. But we also need Jesus "with skin on", or other people. Jesus and God didn't expect us to live our lives in isolation. Respite care and/or adult day care is important for caregivers. Do something you enjoy. Senior centers often have card clubs, book clubs, and take day trips. Even if you only go to a senior center a couple of times a week for lunch, it's far better than nothing,

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It is an isolating job that seems all consuming of time and energy.
However, you need to fnd support / outlets where you are and schedule 'free time / respites / fun / renewal time" in your day to day life.

This isn't just fun, it is essential for you to keep going and keep yourself as healthy as you possibly can, being in a very demanding job / position which is often emotionally, spiritually, psychologically, physcially overwhelming / draining.

You need to set boundaries with your 'on' time and get caregiver(s) in there on a regular basis for your 'off' time. This is renewal time for you.

While your city friends are there, as available, you need to find networks close by.

Check out:

If you have MEET UPs in the area

Associations for elders' caregivers (perhaps dementia, or other associations).

Contact City Hall / Senior Department

Ask social worker at hospital

Check out activities / support at local churches or perhaps a garden group.
There are many people in your shoes and would APPRECIATE knowing you, TOO. You will support others by your involvement, sharing with others. It does take a village.

Everyone needs support during these trying / difficult / energy draining times.

Know you deserve your 'me time,' and that it is essential. No guilt. Ask your neighbors for ideas on how to proceed, where to find your moment for peace of mind, heart, and body. Try yoga and or meditation groups, too.

Check out Rick Hanson, Ph.D. Wed nights 6pm. He is a Buddhist scholar and offers meditation (Zoom) and a talk afterwards. I love him. I've been joining this group for several years now. He is a gem. One of a kind.

Gena / Touch Matters

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Reply to TouchMatters

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Gena/TouchMatters, thanks for your detailed response, I have heard of Rick Hanson, and will check him out. Buddhism/meditation is of interest to me too,

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I keep thinking of the famous song "People, People Who Need People, Are The Luckiest People In The World"! Interestingly, I never agreed with it. I've been a caregiver for nearly 30 years....now for 2 family members. Seriously, the only people I need are paid handymen to help around the house....harder to find than you think. Also enjoy online connections like this forum and Facebook....I can do that at 1am if it's the only break in time I get. Otherwise, from full-time caregiving I'm exhausted....would really like a nap every so often if I could get folks to stop asking me for things. But since the original poster is one who desires friendships, I'll try to be helpful. First off, this may be more of a general statement than pertinent to our original person, sometimes in life we need to reaccess friends. Through my hardships as a caregiver I learned an easy way to do that....The friends who offer to help you with your situation are the true ones. Even if it's too much trouble to actually take them up on their offer, they showed their true character and are keepers. Those who seemed to have moved on without you, or basically think of you as only a social wingman could care less about you if you're not serving a purpose to them. If you still miss outings with the latter group I mentioned, perhaps plan something 3 or 4 times a year with them. They're not worth uprooting your whole life over and certainly not worth your mental energy. Maybe a wild night out a few times a year is all you need to feel a little unburdened.

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Reply to Jannycare

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Jannycare, I don’t know how you’ve done this for almost 30 years. You are truly a warrior. I like your practical take on things, and well remember that song (‘People Who Need People’).

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I try to entertain myself. Luckily, I've been able to do that all my life.

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Reply to blickbob

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Gee. Good for you and how does this help this writer asking for support?

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Danielle123: I, too, strugged as an active caregiver, but the forum helped me as I hope it will help you. I was an out-of-state caregiver.

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Reply to Llamalover47

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This is a truly helpful forum. It helped get me through some hard days when I was going through my 10-year caregiver marathon with my mother. I also try to support others here as I can.

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ok so yo have identified it isnt the best time to sell - then time to look at current options - speak to health officials about any support you can get/and join something locally. Its worth reaching out to your friends to explain your absence reason and to tell them you do miss them. Sometimes even a check in how you doing can help.
maybe theres someone who can give you reprieve or care help that can look after mum for a weekend/day? Speak to care/health specialist and seek their advice.
Care giving is a lonely task and made worse if you are isolated. Bit like a new mother? its very real and screams for you to reach out and see what local support is available.

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Reply to Jenny10

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There are people everywhere, whether you know them yet or not. You may not already know many people in your immediate area because you have been isolated while caretaking, but now that you have more time, remember who you are and what you like to do. Do you garden or sew or read or walk or cook or quilt or love animals or enjoy adult education classes? Look around the community for a group that does an acitivity you already enjoy. If there is a center like the Y in your area, you could go to exercise classes or card playing activities. Attend a meeting of a group that sounds interesting, get involved with a project, volunteer at an animal shelter, join and book group, help with a church outreach project.
Focus on finding an activities (not too many at once!) you enjoy and get involved. You will meet other people who enjoy doing the same things.
Focus on the activities, not on just "finding friends,"so you are enjoying what you are doing whether you find particular new friends in that group or not. Going somewhere regularly, perhaps a coffee shop or a library, will help you feel "at home" there and you will begin to be a regular seen by others.
Whenever you are out doing errands, look people in the eye and smile. Even those momentary social exchanges will brighten both your day and that of the people you say hello to.
Look around you all the time. There are multitudes of other people who are also often isolated and could use a welcoming face.

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Reply to RedVanAnnie

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I am absolutely the only caregiver for my husband who has moderate Alzheimer's. He is with me physically at all times of the day and night. To the extent that he becomes anxious if I am in a different room and even follows me to the bathroom. He has his great sense of humor and is pleasant nearly all the time, but that doesn't change my feeling of being trapped. I recently had to retire earlier than I wanted to because he needed more attention than I could provide, even working from home. I tried to have a companion come to spend time with him so I could work but it upset him so much he walked away from the house. I haven't been away from him in 18 months except to have a colonoscopy (which doesn't count, does it?). I have lost contact with my work friends. I worked 40 miles away from the town we live in and have very few acquaintances here. I felt so trapped in our house, which was in an isolated spot without neighbors, that my mental health suffered dangerously. I found a way to move us to a retirement community with lots of activities and folks around. My husband is more cheerful, his thinking is sharper and I don't feel like there's no one in my world.
I know not everyone has the flexibility, availability or the financial means to make a move like this, but it has made all the difference in our lives. It's worth exploring. I was very pleasantly surprised how flexible and flexible the company was in helping us with the entire experience-from the finances to the physical move.

The isolation is brutal and a very real additional burden to the already immense burden of care for your mom. It's so hard to stay in touch with friends and to feel like you still have things in common with them. It's impossible for most people to understand the life demands of caring for a loved one and that makes it hard to maintain those former friendships. I wish the very best for you. If you find a way to renew those friendships, let me know.

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Reply to mrsand4

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You are right. I have tried very hard to stay in touch, but feel as though I am swimming against the current and also engulfed by caregiving and distance. Thanks so much for understanding.

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You need to focus on the two most important people in your life. Your Mother and You. When this is over, you friends will come back. Care giving is hard and unless you are doing it, you can't relate to it. Peace.

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Reply to GreenChile505

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*You said, it's ended .. simple, take initiative, start reaching out to those friends & start going out. Set up getting together..for dinner or Starbucks to catch up or out for drinks. Start out calling them often just to chat & catch up then plan things.
I am with my 80 year old mom now, & at times when my friends want to go out, I go. We're all 50s so it's not every weekend but we still get together! I'm going to two dinners this weekend. No one is taking my life away from me, I don't care who they are!

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Reply to CaliTexasGirl

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I find a lot of connection and support by participating in caregiver support groups via Zoom. I don't have to leave the apartment I share with my husband, but can share my challenges, get support, and learn about resources from the others who are on a similar journey. Since my husband is a veteran with Parkinson's disease and mild cognitive impairment, I have access to support groups related to these areas. I'd suggest checking with your local Agency on Aging or any organization related to whatever health issue caused you to become a caregiver.

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Reply to pamela78702

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I moved to a new neighborhood a few years ago, just when my mother started needing more help, though she lived in another state. It is a dense neighborhood with a wide variety of people but I have found that pretty much everyone has or has had a family member needing care. I didn’t expect that! I am one of the oldest people in the neighborhood and I live alone. The neighbors have made a point of offering help since they know my mother takes up a lot of my time. Some have also had some very useful suggestions for things to do for and with my mother. I do have friends in the area and I do see much less of them since they work and are busy with their own lives and I did expect to feel isolated when I moved. Instead I found that I have my own support group in the neighborhood! I also talk with cashiers, the folks at the post office and others and while they are only acquaintances those interactions also make me feel less isolated. I tend to be a shy, reclusive person but I am learning how many nice people there are out there with even the smallest interactions.

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The friends and social life I had are gone. Moving two hours away from the city didn't help. I thought making friends with my husband's co-workers would help. Five years of his dementia has erased that. Local folks here for the most part are not friendly-rural, very conservative. No family. So, once my care giving is over I will move. Researching various parts of the country to re-locate to.
As a counter point to this. I cared for my mother in a large city. So much easier and better for me.

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Reply to Ariadnee

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Isolation is real, not only in the physical sense, but also in the mental. Luckily for me my partner and I share caregiving 100% of the time, she even more than me, as I am working (from home) full time, or more, but it is my mother and harder mentaly for me. We've been doing it for more than 6 years now, and we've had lots of fun, and lots of hardships too. My sadness is that my sibling are pulling away, and more and more are pushing for a home for mom, which I refuse. I think that as long as she feels pleasure and pain, joy and depression, she ought to be with kin. They dont think so anymore, and rather than actively support us with time and effort, seem to undermine. Not sure if it is because they care for my health, or are concerned with mom's well being, or that's their way of dealing with the guilt. I try not to think about it too much. Life has definitely changed , but life always does, no?

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Reply to Yarivush

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Do not let guilt take your life. Go out for fun with your friends before some die on you or move away.

I lost friends in the last five years and now looking into the area of aging council for social connections since I live alone.

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Hi Danielle,
I have a similar circumstance. My mom is 105 and I've been living with her for almost 5 years. I'm 2 hours away from my city with my friends so I got a couple mom-sitters from Nextdoor and they will occasionally watch my mom while i go visit my friends in the city.

Is there any way that you can go visit your city/your friends? Is it far away? Can you start calling your friends more? Maybe have some zooms?

I'm thankful. My friends are very supportive but sometimes I just forget who I am - if that makes sense because I'm not living my life. I'm living hers.

Thank you so much for your post. It interested me because it closely matched my situation. All my friends' parents already died years ago. I just turned 71 and am fearful that my 70s will be spent not being fully me. Btw doctors said my mom could live another 2 years.

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Reply to TakeFoxAway

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I am only 62yrs and caring for my mom changing cleaning her etc. I am wore out physically how are you doing it at 71 ? Are you the sole caregiver do you ever think of nursing home for your mom?

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One very important lesson: you must not allow yourself to be the ONLY caregiver. If you don’t take care of yourself, you won’t do too well at this either. Let your clients and/ or family know this and stick by it!

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Reply to annemculver

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Agreed! Now I’m struggling with finding the right people to share the caregiving with. Hoping God will help me do that soon.

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i hear you. I moved back to my hometown 3 years ago to manage elderly parents medical crisis. I’m an only adult child. My father died at 94 last year. It took a serious toll on my health. I kept my job and did not live with them. This buffer was important. I have friends since childhood here but they are done with elderly caregiving. Parents are dead after long dementia illness and they are not interested in revisiting that time. I don’t blame them. They have shared a few stories of how it impacted their lives. I was living a fun, free life in my 40’s and early 50’s while they were saddled with elder care. They are now free and living life. I’m happy for them and they don’t seem much interested in getting involved with my life as a 60 year old caregiver for a 91 year old parent. It sucks. Maybe it’s me, I just don’t feel supported.

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Reply to Beethoven13

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Beethoven 13, I can relate. I also moved back to the city where I grew up and ended up dealing with my mother for a decade. My friends here are also out of synch with me as their parents have already passed on. They are living carefree lives and don’t want to hear about it. It has been isolating. No, it isn’t just you. You aren’t being supported.

This changed me. There were impacts. I am still processing them. Thanks for responding.

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One step at a time. I'm still struggling with this.

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Reply to brandee

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Hi Bulldog54321. Thanks so much for your reply. I try to take good care of myself and the sleep comes and goes. I definitely manage this better after a good night’s sleep.

Mom moved to another city closer to my sister 6 months ago. I own a condo here and need to wait until it’s a better time to sell. I would like to return to my former city (not where Mom is now) when the market timing is better. I am thinking of next spring (or even this fall) if possible.

I know that I will not be staying here indefinitely as I miss my old tribe of friends.

I have the awareness of how ‘thin’ my friendships have become after 10 years of caregiving. It isn’t good for me. Yes, joining groups while I am still here is an excellent suggestion, and exercise is always a good idea.

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Reply to Danielle123

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YOU are important and YOU matter. It takes 3 people to care for one adult. Everyone takes an 8 hour shift.

YOU must really take care of yourself. You know how they say on airplanes that you have to put your oxygen on first and then help anyone else put theirs on.

You must get 8 hours of quality uninterrupted sleep. You must have dental visits twice a year. Health check up at least once a year. You need to exercise and get out of the house regularly by yourself. You need to make yourself healthy foods with high protein and fiber— a balanced diet of whole foods.

Is any of that happening currently?

Would you give us a little more information on your situation? Has your mother passed away? You mention your caregiving is over. Why are you not going back to the area where your house is?

Thanks for any additional information.

I find if you join an exercise group like Pilates or a gym that you can meet people there. Church if that is your thing. Join things in the community like community trash clean up day or habitat for humanity etc.

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Reply to Bulldog54321

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How do you deal with caregiver isolation?

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