After almost 10 years of caring for my parents, how do I go back to a normal life?

Hi.. I have no answers for you as to how to move on from your current state, just wanted to tell you I can deeply relate and I feel for you. I cared for my mom for 6 years, eventually giving up my job to do so full time. Injured my back pretty seriously in doing so. She passed away in February. I have no idea how to move forward from here... But it's not like I can go back!

Assuming you drive, how about finding a safe-haven daytime place to visit as many times as you want at a reasonable cost, such as with lovely gardens? Then, a Zoom session during the Covid may be shared with some friends.

P.S. I forgot to mention that like you, I was taking care of both parents at one time. I helped my mom back in 2004 take care of my dad in the home I grew up in. Since my mom was 79 at the time, I would do the grocery shopping, some meal prep and have my mom take a relaxing bath as a break for her. I did that six days a week and then on Sunday's my husband and I would bring dinner over and visit with them even though my dad was already at the point he wasn't able to eat. He had been diagnosed with Stage 4 Pancreatic Cancer and I decided to go the hospice route because I just knew my dad would not be able to handle chemotherapy and I didn't want to see him suffer. He did pass away quickly (Labor Day weekend). My parents were around 40 years old when I was born. That being said, I was 41 and am now going to be 58 and have been caregiving for almost 16 years straight. I took care of both homes until 2015 - I could no longer do it without having any help. I suffered with my own health as almost if not all caregivers do. I understand the changes that happen within ourselves. Maybe, instead of trying so hard to "get over" having been a caregiver and the toll it has taken - try to learn ways to incorporate it into your life. It is the same thing in the grieving process. My dad was the first death I ever experienced and it is very common for people to tell us to just "get over it" - honestly, you don't - you do things to make it a part of your life. It could be journaling, maybe doing something special to memorialize them at certain seasons of the year and make it your own experience. This gives you the feeling of having a "choice" in how you cope. I hope this is helpful to you Katiekay and any others on this thread in seeing that you are not alone - not by a longshot! Just keep putting one foot forward or maybe even a "toe". :)

Dear Katiekay,

I have never been on ANY forum until I read your question/background! First of all, I'm sorry that your dad passed away last year. You are still in the grieving process but, because you are still a caregiver to your mom who is in MC (and yes, you are still a caregiver as it never stops even with a pandemic going on) the process has been put on the backburner.
My mom is 95 with Alzheimer's and is at a new facility in MC. She nearly died in April at her previous AL facility and I couldn't in good conscience send her back. Because I couldn't see her due to the lockdown, I had no idea that she had become severely dehydrated. I found out after the fact about the dehydration when a nurse called to say she had COVID-19. I had her taken to ER. She had bilateral pneumonia and a severe UTI on top of all that.
The main difference between you and I is that I'm an only child but, the rest is pretty much the same. She has 5 siblings left - all in other states. They don't even call to see how my husband and I are doing as it affects him too. Also, it hurts that no one else visits her. I'm it. I've actually let go of two friendships - one that was 27 years in duration and the other five years. Some people think I shouldn't have done that but, I was tired of having to reach out to them, give them updates and get "zero" response until maybe a week later. When they finally would respond, they had put enough time between my reaching out to them and them responding that they literally could pretend they had forgotten what I said and just ask "how's your mom doing?" and that's it. It was painful and I felt extremely disappointed. Whenever a friend would tell me something serious happening in their life, I made sure to "make time" to reach out to them in spite of the crisis I was going through. It's been a little over a month since letting them go and I do not regret it in the least. It's actually a weight off my shoulders! Now, I can give my full focus to my mom and her care. She has hospice involved now. I no longer have or will make time to deal with so-called friends who can't even call me on the phone. It is a boundary I have set in order to protect myself and my time. They say if you don't put "expectations" on others, you won't be disappointed which is true to a degree but, we're talking about major life interruptions/changes. I don't consider my expectations from friends and family to be unreasonable. I'm not even asking them to "do" anything but be there as a support system. I do feel bad for how your "MIA" siblings have treated you especially the week of your dad passing away!
I have been to two support groups - one large and one small. It always seemed to be so easy for the other members to cope with their situations while I found myself drowning in it. The other thing I noticed is how different the attitudes can be when the main people in the group were dealing with a spouse as opposed to dealing with a parent (I noticed the same thing in grief support groups). I experienced a lack of understanding from spouse caregivers - like "it's just your parents, I have a spouse". I had never said or given anyone the impression that my situation was worse...it's just different! Also, some people were critical if it came to a situation I was dealing with in regards to the facility itself. Eventually, I quit all groups. I didn't need the criticism - I needed help, understanding, some empathy and validation.
I think the bottom line is you and I, as well as others on this thread are sensitive and some of us are probably suffering from PTSD. As for connecting, when I am out in public I just try to interact kindly to those around me and I'm satisfied with that for now.
All relationships take time and energy - I don't have either to spare. I just take things day by day, take time to do one thing for myself, make sure I exercise daily, eat better and get a good night's sleep - which all help!

May you find peace and "yourself"!

Hi KatieKay,
I understand how you are feeling. As my parents health declined, I just naturally took on more and more of their caretaking. I was happy to be their to support them but in retrospect, was unaware that a piece of me was getting lost along the way.

Siblings took advantage of financial resources and created a chaos that health care workers found disturbing. It was an awful end to both my parents lives.

Through my experiences with my aging parents, I focus on the joys of being able to be there for them. I’ve also reflected on the harsh realities of people’s motives
and the change that needs to happen to protect the elderly. I am hoping that I can turn the negatives of my caregiving experience into meaningful safeguards and laws to help others avoid what my parents were put through.

In short, find a passion and pursue it. It has helped me and my journey thru grief and loss. You’ll find others along the way who understand.

Best wishes to you and your mother during this turbulent time. I hope you can hug each other soon ❤️

Kindly,
Susanora

katiekay-

Please remember that you have done a beautiful and difficult thing by caring for your parents and seeing them through to the end.

10 years is a long time. Congratulations on managing a successful career and maintaining reasonable personal health!

My experience is a bit different to some in that I realized early in life that my primary role was to be a caretaker for my parents in one capacity or another - mainly emotional and as a sort of third party to the marriage.

Luckily, they were not bad parents. It was a minor struggle to separate from them and gain a life of my own. (They did not like it but did not create obstacles). But I knew my time to live for myself was limited (I was a late in life baby and the only child).

So, from my perspective, of the almost 50 years I have lived only about 15 of those were "normal" (a life apart from the role of "daughter"). Since returning to the role of "daughter" about 15 years ago, I have been laying a foundation towards the day when my life will be my own again. Mom and Dad are both in their eighties now and seem to grow frailer from month to month.

I hope to be in your shoes, at some point. I believe you can build a satisfying life in the years ahead. Dealing with your grief is important. I have had the benefit of "anticipatory grief" so I hope it will cushion the blow, so to speak, in my case.

It sounds like you are a strong and realistic person. Thanks for posting.

HI I'm Travis and I'm struggling with pretty much the same thing. Your not alone.

I could've written this. I'm there, too. Over six years ago I had to move in with my mother who has dementia. At that time I'd lost my brother, my sister, my job, my car, my home, my fiancee and my life living with my kids. My dad had passed away and my only surviving family member, my younger brother, completely ghosted both me and our mother the moment I asked him to help me financially support our mom. So it's been just me. Friends have all disappeared, both hers and mine, as have most family members. My mother was always a very difficult person, dementia has exaggerated that to the point of my losing my own mind. Whatever she's asked to do she decides not to. Whatever she's asked to not do she decides to do. She gives the food I work hard to pay for to the pets (coincidentally my dog is now obese). She hides everything because she says someone's stealing from her but then NO ONE can find it. She takes everything out of the bathroom do I cannot leave my things there, I have to cram everything into the small bedroom that's become my "home," along with groceries from the pantry so she doesn't give them to the pets, along with all the pet food, along with everything I may want to actually keep. She's lost many things that mean a lot to me. She calls me names, accuses me of lying, never ever says thank you for anything. I took on all of her bills, her co-pays, her meds costs, groceries, etc. I cannot leave her so I have to work from home. I've worked from home since 2015 and average 4-5 jobs at once. Right now I have 4. I also babysit my beautiful 11 mth old grandbaby. So I take care of my mom 25/7, my granddaughter 3 times a week, and work 4-5 jobs, usually through the night. I've become so isolated, it's now so uncomfortable for me to out in public, around anyone, I just avoid it. I walk at night because I don't have to worry about people looking at me. I feel I'm growing old in a tiny bedroom, in a messy house that's not even mine, alone. I've changed - I've forgotten what love feels like, affection, feeling safe and secure, I've forgotten what it's like to have hope in ANYTHING for ANY reason. Every day my mom can do or is interested in doing less and less and less, so every day the weight on my shoulders grows. I feel angry and resentful towards the friends and family who have disappeared and I don't know if I'll ever forgive my brother (it's been 4 years since he even called our mother, I'm so relieved she's stopped asking for him). I haven't had any independence in so long and I've always been independent. I have no car, no money for one, no hopes of ever having my own home again. Having grown up in a chaotic alcoholic home, having a home and family have always been so important to me. I don't like who I've become - I'm always tired, I'm always frustrated, I'm always angry and alone. I am very afraid I'll never recover from this, that I'll always be dysfunctional and self-conscious and it'll just be easier to stay all alone. My mother tells me I'm a bad daughter, (well, until she forgot I am her daughter and so now I'm just a bad caregiver), a bad dog owner, a bad mom, a bad person. I have arguments with my mother I never dreamed I'd have and I realize imy trying to resolve issues from long ago with someone who has no memory of those issues. It's a hopeless situation. I'm trying to get her qualified for help so I can find a home to place her in, the process is long and frustrating and I'm battling the whole time with my feelings of guilt, of abandoning her like my brother did, and my fear if what I'll have left once this is over with. Right now I don't even have a home so where am I to even go? I never thought I'd get to this point in my life (just turned 55) and have absolutely nobody and nothing and nowhere to even belong. You're not alone, I know exactly how you feel. My faith has always been important to me and I have worked so hard to hold onto that but it's been hard. My heart goes out to you my friend.

baby steps. do what you want, lil at a time.

Dear Katiekay,

I was very moved by what you wrote. I think you should give yourself time.
My situation is a little different from yours. I have spent 10 years putting my life on hold (whilst still working) to care for my folks. We have had huge upheavals recently (I reported my elderly father for driving - he has limited vision and when he found out he became violent) I had to leave their home (where I too lived). I was homeless and my business had stopped because of the pandemic.
I had to ask people for help, circumstances demanded it. I also started seeing a counselor.
I started walking a lot and listening to audible books. Just to increase my fitness and pass the time. I worried for a while that my future was bleak. My old friends were in different states and countries.
I started volunteering, that has been very good for me. It has also introduced me to new people I find I have things in common with.
What I have learned is to be very kind and patient with myself.
You too will find a new life, just be patient and kind. Start by doing little things that please you, hobbies, sports, crafts, whatever. Be nice to yourself. Don't bite off more than you can chew, like me you're probably exhausted emotionally, don't worry about what life you'll have now, that can't be planned anyway, it will unwind itself.
I wish you all the best, know that you're not the only one going through these struggles, you will come out the other side (I think of it more like climbing the mountain, we're on the uphill slope, exhausted and breathless but getting fitter), a life will unfold, different than the one you left behind to care for your parents, but filled with what you choose.
As for your siblings and all that drama, you deserved better, guilt makes people project, but I'd walk away from anyone that makes me feel bad.

Good luck, and take good care of yourself.

I understand how you feel. It was a shock to me when I realized am a different person after caring for my mother. I just began to live one day at a time and did what I wanted to do at that time. I did not know what I wanted so I just tried different things I thought I would enjoy. I remembered as I reared my children, I introduced them to many different activities for exposure. That is what I did for myself. Somethings I enjoyed for awhile and after I lost interest, I moved on to something else. As I was finding the new me, I realized it was a process and it would take time. We are all different and on different time tables. You will get there!! This is a new life.

good point I meant to say, lol oops

Marcia, god point. What is fun? I can't remember the last time I had any fun.

When mom was still alive I was so consumed with her care that I never stopped to think about myself and what I'd like to be doing. It's been five years since she died and I still don't know what to do with myself and yeah, something fun would be nice.

Ah to be young and carefree!

Sound like there are lots of others in a similar situation through caregiving. I hope we can all work our way to living life again. I know..especially for me it won't be the same life because now I am 10 years older and I will never have my Mom or Dad back.. nor my sister. (I won't go into that scenario but there are previous posts about her from last year when my Dad passed if you are interested.. but the relationship is not reparable.)

Couple of people mentioned my job and making connections there. I have actually been working from home since about 2009. All of the people in my team are in different states then me .. so I work remotely as do they. I still have relationships with them and care for them.. but it is a remote relationship.

As far as the support groups. Someone mentioned not being able to afford them.. but there are lots of groups that dont charge. One group is made up of the families from the memory care facility. All of these women seem to have pretty good , busy lives outside of their parent in memory care. The subjects we discuss are mostly very surface level and mostly dont relate to caregiving. The group was in person but since COVID it is now all over zoom.

The other group is an online group and our meetings are all over zoom. Most of the people in that group have a spouse that has dementia and seem to all have good family relationships (so far anyway) and losing relationships does not seem to be an issue with any of them.. all have supportive people in their lives.. which is great for them.

I do get something out of both groups but not the aspect I brought up in my post which is having to rebuild my life. I suspect many from my online group tho will be in my position at one time during their caregiving journey.. I dont wish that on anyone.

I'm glad we are having a great discussion on this topic.. I appreciate everyone's input!

Teach yourself a music instrument. I am teaching myself Bansuri (Bamboo Flute of India), even 15 minutes a day. Music heals us internally.

My Dad has lot of conditions and I try to tackle one at a time. After 4pm I shut off computer, do household chores. When I sit for a few minutes I practice music notes.

Your post rings so true for me! My husband and I were talking and he asked me what I like to do for fun. He was joking at first and then I started crying and said "I have no idea! What is fun?" I have worked full time and cared for my parents for the last 5 years. EVERYTHING I knew and loved, I have given away. My dad passed away in January and my husband and I moved in with my mom. She is continuous care as you well know. High functioning 90 year old with a broken brain. When I had a job, I at least came home and had a break. My safe/happy place has been my home for the past 20 years. Now I gave that away as well. First thing in the morning before she wakes, I get some things done. When she goes to sleep at night I am so tired I can barely function let alone enjoy a moment of silence.
The hardest part is people who say "call me, I would love to help". It doesn't matter when or who I call, it is never a good time, day, or year. I call and they tell me that day doesn't work for them and if I say "You tell me what day works" and they promise to get back to me, but never do. I actually had a friend lined up and she just didn't show. When I ran into her she pretended like it didn't happen and asked when would be a good day to come over. Now when people say that to me my response: "Please don't say that unless you mean it!" and they usually snicker and change the subject.
Sorry to just ramble on but your post struck a nerve. I love this support group, I know that I am not alone!

It has taken me nearly 4 yrs. to really feel I am my own person again. I started slowly with small things. Tried to remember what I liked and wanted to do before all that began 17 years prior...I feel ready to do some things now, like move to a warmer climate...but now the pandemic is putting life on hold. I keep a list and a journal, and spend time online looking at places and real estate, or where I would like to vacation. I began looking at decorating magazines to figure out what I liked and didn't like anymore. Basically trying to figure out who I still was! The list grows daily but if and when I can attempt these things someday, there will be a lot to do! Try a journal and beginning with small things. Go forward and know you were a good caregiver to your parents and did your best with what came at you. There is a reason the rearview mirror is smaller than the windshield! All the best to you!

I'm glad to see your response to some of prior suggestions. I'm surprised that one of the 2 support groups that you were in did not help give you better advice on resources from Alzheimer's Assoc., respite care, not to give so much of yourself that you forget to care for yourself, reaching out for help. First, take time to rest, relax & enjoy not being responsible for another person. See if you can find a grief support group. Visit your mom, but don't stay all day. Find a show where you can laugh, try yoga, get a pet, try a hobby. Plan a vacation once it's safe to do so. Maybe all bridges are not closed with friends or families. Reach out & find out. If those bridges can't be reconnected, find new friends. Join a few groups, if religious go to church. Plan for your retirement. Think about volunteering when you retire. Think of what activities excites you & pursue them. Keep your mind active most of all. Good luck. You don't want to return to normal, you want to evolve & re-invent yourself. These suggestions are not in a particular order. Good Luck!

Thank. you all so much for the comments and suggestions. Yes.. I am still grieving for my Dad's death, losing my mom through dementia, and losing my relationship with my sister, some other relatives and friends. I am a much changed person. There probably are positive changes.. and I need to focus on those.

I do need to get on with life though as I am 61 now and need to live before I am in the same shape as my parents... ugh. I never thought I would be reinventing myself at this age.. but thats what I need to do.

As far as travel.. I have been wanting to get away and had been thinking of planning a trip before all this COVID stuff happened... but I agree.. that I need to get a way and have somewhat of a restart in my life.

Currently I live in a house but I am considering at some point looking at an over 55 living environment so I can be less isolated at home and possibly meet other people.. I will probably stay working at least another couple of years and I can probably move anywhere after that .. so I may start planning that as well.

Thanks you though for all the responses.. I need to read through all of them and get some more ideas.

:)

I’m in the same boat myself. My life has been taken up by caring for my parents during serious illnesses. They are much better physically. I’m taking a long mental health break from them.

I wonder what has happened to my life in the last four years, too. In these situations people are never advised to grieve for their lost time and huge life disruption.

It’s ok to be angry about it if that’s what you feel. I do.

It’s not easy and feels like punishment to be searching for friends when you did the right thing (caregiving) & your relatives and friends disappointed you. That happened to me, particularly with relatives.

Not sure if this is what you’re going through. It’s worth thinking about the malaise you feel. We all know at this point how to make friends. It’s figuring out what’s bothering you. Then, take the time to expand your social circle. I assume it will take me at least a year to do this. I also plan to be very careful to pick my friends wisely.

Imho, you have support and Friends on this forum. Please come back often. God bless you.

Have a good cry, you've been through a lot! You are grieving and have to give yourself permission to take stock of where you are at now and develop a plan to get you moving in the direction that you want. Yes, this may mean finding a different counselor, but it is worth the time, money and effort. Let the past be part of your story, but now it is time for YOU! I don't know what state you're in or your demographics, but survey what's available, find/build your tribe. Those "friends" may reconnect, however that won't be your priority. Do something really nice for yourself and lean into life. Peace, Love, Light°•○☆

I was thinking about losing friends and relatives, and the resentment that can go with it. We all accept that until you have walked the walk of the carer, you don’t understand. However we are not so forgiving of the people who haven’t understood. Suggestions annoy because they aren’t appropriate, not treated as a misguided attempt to help. We say that friends ‘abandon’ us, when they have just kept the interesting busy life that we can no longer share.

I’m not sure that carer groups or therapy will make you re-develop your pre-care identity, or a new one. Perhaps just as likely to keep you focussed on caring. But trying again with the old friends and relatives, with a new headset, might be worth some effort. I think I too perhaps just accepted that they had all moved out of my life, when I should have tried again.

One day at a time.

Katie Kay,
I can empathize. My Dad has lived with us 4 years now and it has completely caused a deterioration in our lives emotionally and physically. We stopped socializing in our home bc he continuously interrupted with embarrassing and inappropriately irate stories - interjecting his political views upon our guests. As a result, we have lost touch with many of our friends. They don’t get it bc they haven’t been thru it - easier to make suggestions from the sidelines.
Travel (when we could find $$ coverage for my Dad) has been our only reprieve. I suggest you plan a trip (even a singles trip) to a place you’ve always wanted to go. Join an exercise class, get a puppy and take long walks to rekindle neighborhood relationships, volunteer at a school or elsewhere. It’ll feel like a huge effort, but sometimes you have to force yourself to get started again.

I can't really say how to get back to a normal life. Somebody told me life is like a river. You cannot step in the same river twice, because it's a different river, and you're a different person. My mom died with early onset dementia. I am an only child. Dad and I cared for her at home when I was a teenager. Finally, we put her into MC, where she lasted several more years. Now, in my 50's, I'm caring for my dad.
Well, when mom first went in MC, I remember feeling really guilty, any time I went out to do something I wanted to do. I was young, and had no problem thinking up all kinds of things I wanted to do. After awhile, I embraced the guilty feeling, and sort of thumbed my nose at it: like, "nya nya nya boo boo, I ought to be changing Depends, but guess what? I'm hiking! I've waited years to be free to just pick up and do this, and, by golly, I'm enjoying myself."
My life is somewhat on hold again, because of dad, but I am looking forward to what I'll do when I am free again. Meanwhile, I "seize the day, " grabbing little pleasures where I can. Another satisfying thing is to do stuff that brings me one step closer to future goals. (Like getting in shape so I'll maybe be able to hike part of the Appalachian trail.)
I'm making my way, and I guess you will, too. Best of luck to you (and me!)

After reading your post, the thing I do not understand how you already have a therapist and you are member of a caregiver support group and these people do not seem to be helping you with your quest to go back to a normal life. Most of us do not have access, or cannot afford either a therapist or join a support group. If your therapist and caregiver group Is not helping you, then I think it is time for you to find another therapist and/or group.

I'll also state the obvious here, although it's a bit painful to contemplate--after one has been caregiving for a long time, not only is one trying to reclaim a past life, but s/he is now that much older so some adaptations to being the "new" age must be made, particularly socially (assuming health is essentially unchanged). One is, and is perceived as, a member of a different "age bracket" from that which was the starting point.

It seems so strange that trying to do what you think is the right thing to help a parent can open your eyes to relationships that you have with others. I completely understand what you are saying about how much your life changes. I keep thinking about a movie I saw where two sisters, totally different, were having somewhat of an argument. One sister told the other 'if we weren't sisters, we would never have been friends'. I think that just might be true. It's a hard pill to swallow, but look back at your siblings. Did they really change much or did you simply come to observe their behavior in a different way?

Your job is a plus for you. You usually spend more time with people you work with than at home. Have you met others at work who have similar view points on things? These folks may be the new relationships.

Those that tried to lay any of the blame of your parents declining health have to have someone to blame. When they weren't around for the day to day care, the parent went from being fairly functional at one point in time, to - fast forward - passing away. Take a real hard look at them - have they ever accepted responsibility or guilt for things they have done? Maybe not. While you can work to forgive them for things they said, can one really forget what they said? In most cases, probably not. Your relationship with them will probably just be very different than it was years ago and as you get out more you will find other people who are better at supporting your beliefs. Some people are family by blood and others by bond. Best wishes to you.

I wonder about this happening in my future...the things I have to deal with (dirty house, laundry, cooking) will evaporate to some extent and I wonder if I will have the same curiosity and interest with recipe collecting etc when the motivation of NEEDING to cook for others is gone.
My guess is just as our identities, as we see ourselves slip away when we go into caregiving roles over time with the increasing needs of others, over time as well we will regain ourselves again. I'm not sure the process can be sped up, and for sure the inability to comfortably socialize due to the COVID situation does not help...
I would think to put your big toe in the water so to speak, you might want to consider taking a class in an interest you have, or volunteering. I work at a local office on aging and we are always looking for people to help and people often have hidden talents...even grocery shopping! Teaching, knowing about tech stuff or the computer...assisting with ongoing programing...A book club or group? Even starting one. Actually I never heard back, but there was a woman who wrote a book called Working Daughters...I suspect she might have been overwhelmed, and no doubt the virus really had an impact...but they were looking to start local groups.
I don't think it's as much your having lost your identity, it's that your identity has evolved and will continue to.