Follow
Share

Since beginning my caregiver journey, I have noticed that I’m not excited about things I love anymore. I have learned to set boundaries and put myself first but the damage has already been done. I’m in counseling but can’t afford to go weekly which would really benefit me. I’m just reaching out to see if anyone else is experiencing this?

Find Care & Housing
1 2 3 4
Yes, right now I'm lying on the bed, looking out the window at the river, and surfing the internet.
Helpful Answer (3)
Reply to brandee
Report
Starrann69 Mar 20, 2024
I lay in bed and dread my dad calling for me each morning at 8 am. There was a time in my life when I would be up and about by 5 am enjoying the day.
(1)
Report
Yep. And I also feel guilty for feeling this way. I am by nature a very enthusiastic and energetic human, full of joy & curiosity. After 11 months of caring for both my parents who have dementia and mobility issues, I feel drained & merely existing, not really living. It’s probably a bit of depression setting in, at the reality of my situation (being that I am losing both my loving parents simultaneously and alone). I find myself not reaching out to friends or making any efforts to go out. I don’t pursue my passions anymore b/c there is no time. Too many duties that require immediate attention. I think I’ve just become sad and as a result, things seem less fun perhaps. My time with them is limited but I know I meed to find better balance to enjoy them and me.
Helpful Answer (1)
Reply to Mamasgal
Report
faithfulbeauty Mar 20, 2024
@Mamasgal,
Yes, please try your best to find time to enjoy yourself. Please do this. I have begun to do it and I should have a long time ago but even now when I try, sometimes I do not have the motivation. I signed up for a fun work event and I almost want to cancel because I'm exhausted physically and mentally. I was at my dad's yesterday and had to clean up dried feces from the floor and I think I almost had a breakdown. It was at that point that I started thinking about not going to the event I signed up for. I'm going to push myself to go. If it were not for work, I would probably be in worse shape mentally.
(1)
Report
This may not be relevant for other people, but I find I’ve ‘lost’ a lot of things because of Covid. We caught it at a theatre performance. We’ve stopped so many things since – theatre, cinema, restaurants, anything with crowds. Some of them stopped happening (for a while, or still haven't started again), some we just don’t do any more. And of course we’re getting older, mid 70s, and have been unwell. We’ve lost habits. Perhaps more than one thing makes us ‘lose’ the things we used to enjoy.
Helpful Answer (4)
Reply to MargaretMcKen
Report
waytomisery Mar 13, 2024
I agree. There are some things we don’t do anymore , large crowds , concerts, sports arenas , movies . We watch on TV at home .
We do go to restaurants sometimes , we felt we had to do something or lose all friends . We also go just the two of us but we go off peak hours, less crowded .
I have asthma, DH is diabetic , not good when you come down with Covid , Flu etc .
Not even retired yet . I have thought about how my parents and in laws never worried about anything like this during their retirement years. I feel we’ve “ lost “ feeling comfortable doing things . We’ve lost the type of retirement our parents had due to Covid .

Even though Flu in our lifetime was always around it did not put the fear in some of us to limit things like experiencing the Covid pandemic did .

We did go on beach vacation last year . We wore good masks on the plane .
This year driving to a beach condo that we rented. Who knows how long we will continue to do these things.
(3)
Report
See 2 more replies
When my LO was almost ready to be discharged from rehab after a stroke, I was subject to meetings with the OT, PT, speech therapist, and so on. The social worker interviewed me extensively as to what kind of life I'd lived prior to LO's stroke. I told her - work, recreation, family activities, leisure.

She looked me in the eye and said, "You can forget all of that. You're a caregiver now."

Truth.
Helpful Answer (4)
Reply to Fawnby
Report
faithfulbeauty Mar 13, 2024
@Fawnby,
We should not have to forget all of that. I've read many times that sometimes the caregivers are the ones who become in worse shape or as worse shape as the person they are caring for and that sometimes the person who is being cared for, lives longer than the caregiver because of stress. Stress causes many illnesses. We just have to do the best we can while also taking care of our own needs.
(2)
Report
Yes. I'm scared to be happy or look forward to anything anymore
Helpful Answer (3)
Reply to BrandyT
Report
faithfulbeauty Mar 13, 2024
@BrandyT, I understand. With my situation, my dad does not want me to go anywhere or do anything fun. I have learned to to not tell him until the last minute when I'm going out of town because I noticed that he would always start complaining about not feeling well or say he needed to go to the doctor. Yesterday, as we were talking to a family friend, the friend said that they liked to travel and I said that I did as well and that I hoped to travel out of the country one day. Dad said.. " I have already been, there is nothing to see. You will get somewhere and wont be able to get back." He is very negative anytime I express an interest in doing something. So my advice to you is to please try not be scared. Do all that you can to enjoy yourself. Life is too short not to. My dad has lived his life and had fun while doing it often at the expense of my mom and I, but he has a problem with me living my life to the fullest.
(1)
Report
Yes, definitely 💯
Helpful Answer (2)
Reply to Di1961
Report

I am soo happy I found this site! YES! Like you I am working to set boundaries and take care of myself but as you say the damage has been done. I have not tried counseling yet. Today, when people ask me what my hobbies are I just stare at them blankly while I try to think of something to say. We are all burned out and I'm just happy I found this site with other people who are going through the same experience and understand.
Helpful Answer (6)
Reply to PoodleLover23
Report
faithfulbeauty Mar 10, 2024
@PoodieLover23,
This sight has been very helpful to me! It took me a long time to set boundaries. A friend of mine explained how important boundaries are and that is when I started doing it. As I said, the damage has already been done, but I feel more in control of my life. I also recommend counseling. It has helped me as well.
(2)
Report
Caregiving for me highjacked my talents in sewing. I knew I still had it, but I had limited time because of always having to look out for other people. To tell you the truth, I'm tired of it even though I do it sometimes professionally. I found out that dealing with sick people follows the same dysfunctional dynamics like when I was dealing with my immediate family including being criticized for not doing more, not being able to enjoy my downtime and constantly being on edge all the time. I would probably do better in a facility because at least there is help there, and I wouldn't be doing the one on one that can be nerve racking not being to escape for five minutes to get some air. Taking the trash out was the only respite I had with my last case. These people would get more and more demanding and needy, talk all of the time, and I would be blue in the face because of it. However, society sets all of these rules for caregivers and other people professions that we must be patient, kind, loving and empathetic. Okay, we are all of these things, but we are burning out! Some of us are angry as hell and depressed because even if we don't know it yet, our bodies tell us enough is enough. Change something! For me, I think I need to learn to be patient, kind, loving and empathetic to myself.
Helpful Answer (3)
Reply to Scampie1
Report
faithfulbeauty Mar 7, 2024
@Scampie1
You are so right! Society sets all these rules for us. We are suppose to put ourselves on the back burner no matter what. My hair has started shedding and I know it is stress. Plus, my dad often has an attitude with me ( he always has). On my days off, he always has something for me to do but I have started saying no. If it something important like going to get medication or a doctor's appointment, I will but sometimes he find things that really don't need doing or matter. I have a week off next week and I'm not looking forward it. I just want to be happy again and enjoy my life.
(2)
Report
Yep

I discovered it's one of the signs of burnout.
Helpful Answer (5)
Reply to blickbob
Report

I could not do this (full-time caregiving) with out my low does SSRI. Talk to a doctor. Take care of yourself! Easier said than done, I know!
Helpful Answer (2)
Reply to AlzWife
Report

Care giving is a selfless act of kindness that can absolutely make you focus on others to a point where you can easily lose yourself.Try to step back a little if you can give yourself a break. Get some help and try to do the caregiving partime.You will find yourself again.
Helpful Answer (1)
Reply to Bubba12345
Report
faithfulbeauty Mar 7, 2024
@Bubba12345,
I have definitely lost myself. I'm thankful that we have a lady who helps out in the mornings but I'm afraid she is getting tired because she also has another job.
(1)
Report
Usually losing interest in things you enjoy is a symptom of depression or burnout or even a physical issue. I am glad you are setting boundaries. Please prioritize your health. Get a good medical examination. Ask for a mental health referral to a psychiatrist if no physical problems are identified. There are wonderful treatments out there for depression - which is often called "the common cold of mental health" since so many people do experience depression.
Helpful Answer (3)
Reply to Taarna
Report

Yes. I've been sole CG for 2.5 years now and previously had been able to enjoy doing my favorite crafts (crocheting for one). My dad's recent decline has sucked all of my energy and enthusiasm from me. I forced myself to go to the gym the yesterday and I caught myself beginning to cry while I was on the treadmill.
Helpful Answer (0)
Reply to Zs60607
Report
Di1961 Mar 7, 2024
Me too. 2 and half years. I feel like I have no zest for life, my soul is gone. All the comments I can relate to. I cry, try to done something for myself, but my Mom is &5 bedridden with dementia. It’s so depressing to see this everyday.
(3)
Report
Oh Goodness! Yes and yes and yes. At first thought I could handle it fine, but as I've become older and my mother too (93) and it's been going on 7 years, it has become an enormous challenge because I have no one helping to relieve all the duties of house maintenance, bills, strategy of finances, cooking meals or deciding to pick up food to go and then on top of that I work in the evenings. And it's not even because she can't get around or go to the bathroom on her own. It's her dementia. Her cognitive skills are declining, so she can't remember how to sometimes do simple things, we take for granted. Many times I get burned out. The once a month caregiver group meetings I try to attend are informative and wonderful WHEN I can get to them clear across town. I suffer from anxieties and depression off and on, but fortunately, not lasting for a straight. I find that if I can manage some sort of escape, whether it's walking, or an exercise class, or a talk with a friend (not necessarily about caregiving, but other good distractions) it helps lift me and I am more hopeful. I also cannot afford a counselor at this time, so actually this site is helpful when I have time to get on it. I am an artist, so have not painted in years nor played my guitar and sang. I used to perform at open mikes. But I sing in the house and I try to go hear friends perform who play in small venues. I find that any little thing I can do that pleases me helps. You have to just find little joys. Caregiving is hard because also I am not relating to someone I love in the same way anymore and even though I know enough about dementia to realize it's not really my mother, but her brain changing and acting up, it is still a challenge to learn different, more calming ways to communicate with her. And that is the main key ( relearning how to communicate) to calm anxieties in her and me. There is so much I cannot afford, but I just try to take it day by day. There will be damage, but you can/will learn to navigate your new life in a different way. And everything depends, all your decisions, on how much you can take and how long you want to be in it and the progression of the patient. You can look into your area and see if it has group therapy/meetings for caretakers. I think if you are in counseling and just going when you can is terrific. Keep it up. And good luck! It definitely is not for everyone and it usually falls on someone's lap and I think it's been the hardest job I've ever done and there is like over 30 million people doing this.
Helpful Answer (4)
Reply to squirrel13
Report

faithfulbeauty, I feel like you are expressing all of my thoughts! I, too, feel like I have lost joy, and wish I could afford regular therapy, not to mention the time to spend on myself.
We do have one big difference, though. I am caring for my husband, whom I love more than anything. I am frustrated at what he has become, and that my days are filled with changing soiled diapers and washing soiled linens. But I remind myself that I would rather live like this than to live without him around. He was the ONLY person who was ever really good to me in my life.
I have already told my dad that I am not taking care of him if he needs help. He will be placed in an appropriate facility to care for his needs. Fortunately, he has a wife who is close to my age, so I am hoping it will be her problem to work out.
You, my dear, are carrying extra stress and resentment, knocking yourself out for someone you don't feel deserves it. You are not taking care of yourself. You can place your father in Assisted Living or Skilled Nursing Facility without feeling guilty. He will be well taken care of there by professionals who will treat him like any other patient, without the resentment and the history.
And if you ever just want to talk, to vent, feel free to message me directly. I am happy to listen to your stories of aggravation and commiserate! I'm no professional counselor, but it may help to express your feelings and have another perspective, or just to know that others are dealing with the same frustrations.
Helpful Answer (3)
Reply to CaringWifeAZ
Report
faithfulbeauty Mar 5, 2024
@CaringWifeAZ,
I feel like I'm running on empty. It is extremely tough and I'm glad I have this forum to be able to connect with people who understand. I'm gaining weight because I do not have time to prepare healthy meals. I eat on the run a lot. But starting tomorrow, I'm going to make the time.
(6)
Report
Yes, very much so. I do see a therapist and she encourages me to find time to take breaks and do things for myself, which I do. And I enjoy those things while I am doing them (Going to a concert or comedy show with my family, having lunch with a friend, etc). But the rest of the time? I just can't make myself do anything in my day-to-day life. No gardening, no embroidering, no crafts, no decorating. It's hard just to make myself get up and clean or get up and shower. I have heart failure so I am limited in the anti-depressants I can take. I was able to increase my dosage last year but it's just not enough. I don't even do day to day care of my mom. She is in a memory care facility. It's just everything that has happened in the last 18 months.

I'm sorry if this is a downer. I just want you to know you are not alone and I hope you are able to get to a place of being excited about your life again.
Helpful Answer (6)
Reply to nickieo
Report

I am sorry others are experiencing what I am, but I am glad to know that it isn't just me being a less than stellar caregiver. I try to keep myself going, but the planning and logistics involved are overwhelming and even more so when the enthusiasm is gone. I am three years into this and feel as though I passed burnout a long time ago. My husband could easily last another 5-10 years. Not sure I can survive it
Helpful Answer (9)
Reply to dhbarte
Report

I explained it to my husband that I don't feel human anymore. I've been spending more time with other family members and that has helped along with prayer and setting boundaries. It's such a tough road to go down. You might want to reach out to churches in your area that do free or low cost mental health counseling. Some have psychiatrists and therapists on staff or in their membership. I'm amazed how many our church has.
Helpful Answer (3)
Reply to JustAnon
Report
nickieo Mar 4, 2024
I keep telling my husband, I just don't feel like a person anymore. It's like I just....exist. You can ask me what do I want or who do I want to be - I can't answer.
(2)
Report
Wow -- it really helps to know that I'm not alone!

Being a caregiver is not for sissies...
Helpful Answer (10)
Reply to WalterDeemer
Report

So very true. I like to camp, fish, hunt. I don't do any of those things now because I can't let my partner be alone for several days. We do have caregivers who come in to help, but not AMs and PMs. I got some wonderful lures for Hannukah, but I wonder if I will ever use them. She gets worried when I leave the house to go grocery shopping!

Life is boring and bland; being able to read books electronically is my only pastime. Cooking is an outlet that I use since I enjoy it and we need to eat! I am having rather rigorous back surgery end of April so gardening, another get-outside thing I do, may not be possible.

I feel like I am in prison; my so-called golden years do not exist any longer. Laundry, poop, clean, cook. No, we don't have family to help out.
Helpful Answer (5)
Reply to Miriam1
Report
ThomasY Mar 3, 2024
You never lose the passion to fish. I too long to get back to Grace Coolidge Creek to catch some Cutthroat. I've made plenty of wet flies and dry flies in my spare time and am looking forward to fishing Owl Snuff Creek to get that 3 lb. Dolly Varden that got away.
Since the beginning of time, people have constantly thought about the one that got away... I hope you get a chance to get back at it someday.
(2)
Report
Yes. Thats depression, lack of interest in anything. But you can change that (and should). Try it in your own time but soon. Do something you love. No one will judge you for taking time to yourself. In fact I was told by a counselor my 1st step is to take care of myself FIRST, because if you don’t, you both drown. I felt my own sanity slipping at times and my closest friends and family saw it too. Bad. So, There must be a level of self preservation in this, and that includes living. Nature walks, music, cooking, games, whatever you enjoy.
Helpful Answer (7)
Reply to tonybiblerocks0
Report

Faithfulbeauty
You didn’t mention whether you had any sort of relief/help from families or friends.It is extremely important to have breaks. If you have a close family member or friend, perhaps you can help each other out.Your family member or friend can sit with your loved one for a few hours so that you can attend an exercise class, get a massage, or revisit another activity you enjoyed and then you do the same for him/her.

In my city, there are adult day care centers that are fairly inexpensive. Perhaps you can look to see if there are any in your area. The cool thing about the adult day centers is they allow your loved one to get engaged in an activity for a few hours so you can take a break. I would also look into your loved one’s insurance for senior healthcare benefits. Many times you can find really useful benefits through Medicare and AARP as well.

I’m not sure if you’re currently employed but many employers now offer free therapy to their employers. Look into that and take advantage of that as well. I do! This will give you an opportunity to vent and share your frustrations which can help free your mind of some of the emotional stress you’re facing.
Look into support groups in your area. You’re not alone and talking to others facing similar challenges is always helpful.


Make a list of some of the activities that you would like to resume and possibly new things you want to try - maybe a vision board! Hang it up. Having something that you can actually put eyes on daily that will remind you of the goals you set to be get back to doing life again. Commit to accomplishing the things that you want to do and the places you want to go noted on your vision board and start working on a plan. You can do it!

As I mentioned in my earlier post, my dad passed away recently. My parents were married 60 years so I know that my mom needs me more than ever but I’m not going to be any use to her if I crumble so I have to protect my mental and physical well-being just as much as hers. At the moment, basically she’s in very good shape physically for 80 yrs old. Cognitively not so great. I enrolled her in Zumba and sit and be fit classes at a local senior center and she loves it. It gets her out of the house and away from me so I can have at least a 4 hour break 4 days a week.

Now it’s not always sunshine and rainbows….she attempts at times to make me feel guilty for leaving her home or dropping her off when I want to get out without her but I’ve learned not to fall for it for my own sanity . I remind myself that it’s imperative to have “me time” and I go. PERIOD. Sometimes she throws a fit but I don’t care because I know she’s fine.

Sometimes I’ll just jump in the car, grab an ice cream, and just drive. Sometimes I’ll just take a walk in the park. Sometime I’ll grab lunch or dinner with friends. Sometimes I’ll simply stay home and “Netflix and chill “ but the goal is to do it without her so I can be in my own bubble - a break from caregiving.

Lastly I want to say this and this is EXTREMELY important for you to digest. The fact that you even posted this question and asked for advice shows what an incredible caring and loving individual you are. You didn’t have to step up and be a caregiver. You could’ve put that incredibly difficult task on someone else or a facility but you didn’t. You’re putting the needs of your loved one first which isn’t a horrible thing but you need to start balancing their needs with your needs. Your loved one is lucky to have you!!!

Remember to show yourself just as much love as you’re showing your loved one. Your mental well-being matters. Your physical well-being matters. Getting back to living life matters. Find time to meditate and pray. Very important if you’re a religious or spiritual person. The power behind sitting in silence is incredible.

You’ll be ok. You just need to pivot and create a new plan. Keep us posted on how you’re doing. We’re all here for you!
Helpful Answer (7)
Reply to Bangieb
Report
faithfulbeauty Mar 3, 2024
@ Bangieb,
I do not have family that helps. I'm thankful for the lady who comes in the mornings to help out. But I'm afraid that she is beginning to get tired because she has another job as well. I work part time but I will begin working full time in the fall because I need the income. My dad is not open to adult daycare or doing activities with others. When he was rehab at the care center, he never participated in anything. I'm so depressed, I do not even know what I like anymore and the things I use to like do not interest me. I use to love going shopping or just looking around and now when I try to, I feel like I'm just wondering around aimlessly. Thank you so much for your kind words! I'm trying hard to find "me" again! I do enjoy working in my yard and I will make sure I continue that this spring and summer. Right now it is the only thing I'm looking forward to. I do pray alot for strength and I know the Lord knows my heart and that I'm trying.
(4)
Report
I have been caring for my parents full time since Sept 2020. My dearly beloved Dad passed in Apr 2021 and I am so grateful for those months caring for him! I cont caring for my Mom (later stage dementia) and often feel as you do. Reading through the replies, I haven’t seen any remarks about prayer time.
For me, this is more of a calling, than a duty. And the times I spend w the Lord - whether reading daily offerings online, sharing with a friend, or praying in my time - is a balm, a respite that lasts well beyond the 2-30 minutes I spend with the Lord.
I hope you can find time for Him too.
You will begin to find peace, and then yourself again.

PS I am not a nun or anything; just a retired dietitian. I have bad days where I hate what I’m doing, the time I’m “losing” from my own life, my own goals, my hopes of dating! But I thank God for the time I have to give back to my parents, and for all the Blessings in my life leading up to this moment.
“Be grateful and happiness (your joy) will follow!” - that’s my mantra.

God Bless you all for doing the work of loving care. I hope this helps you.
Helpful Answer (10)
Reply to Gallus
Report
JMS1010914 Mar 3, 2024
Thank you for this!!!!!!
(2)
Report
Yes. I get so tired and sad watching my mom decline that it affects my motivation and energy. But I just do what I can to replenish and restore energy by taking time to do things for me. It’s worth the effort.
Helpful Answer (9)
Reply to SusanTurley
Report
Riverdale Mar 3, 2024
Yes it is. What you can do for yourself will give you durability to absorb what you must
(3)
Report
ME TOO! This is not how I planned to spend my retirement. It's walking such a thin line. I want him to live as long as possible because I love him, but I hate not having any help, never being able to leave the house because he is an invalid. I'm working on getting paid help a few hours a week, just so I can get out to do anything; but he only wants me! What my therapist has told me that makes sense is: "Remember, it won't be forever." He has been on hospice for five months and is not ready to die. "My time" is now, between 11pm and 1am, so tired. I think my interests will come back in time.
Helpful Answer (6)
Reply to AccidentalCare
Report

Yes I have, I aways loved working in my small shop doing wood working, tinkering with my hunting truck, working in my yard, fishing and hunting. But since my wife takes a lot of that time, I have put it off...She is in a stage now of shadowing me everwhere I go, even to the restroom.
I have grant that pays if I need a sitter but it is not enough if I want to get away for a whole day or two.
There seems to be something each day that wrecks any time really away for me.
Either someone coming to bath twice a week, taking her to a Caring Place for 6 hours or day of nurse coming to check her.
I wash her clothes often, changing her bed almost every day and hand bathing and days she is at the Caring Place I am grocery shopping or running some
errands.
So yes I understand, but all this seems to be a regret but far from it. I love her more than anything and will do for her as long as she needs me.
I do miss some of the mentioned but no counselling will cure that because it has to be done.
Helpful Answer (6)
Reply to CaregiverFirst4
Report

I sure have! Since caring for my husband, I had to sell my business, ending my 53 year career and all "friends" associated with it. We also must sell our house, that he built 50 years ago and I have lived here for 40+ years. Nothing interests me anymore. I think it's just being so tired and depressed about the direction our life has taken and I feel so alone, even though my sister helps me as much as she can. I'm not sure how to handle this either. Just wanted you to know that you are not alone
Helpful Answer (8)
Reply to Suzanne0437
Report
Riverdale Mar 3, 2024
A move is exhausting generally but certainly more so with other factors in your life. Perhaps you could look at it as purging and downsizing with a future with less burdens in terms of responsibility for a business and the needs that arrive with homeowner ship. I wish you strength.
(2)
Report
faithfulbeauty: It is imperative that you seek respite whenever possible even for short periods.
Helpful Answer (7)
Reply to Llamalover47
Report

I just wanted to say thanks to EVERYONE who has posted about my question. I'm in the process of reading all of them! I did not realize I had this many responses until about a couple of hours ago when I was feeling really down. Caregiving is hard and people can not fully understand unless they have been there! I want to enjoy life and have fun before it is too late. Keep the comments coming and I know we can all help each other in some way.
Helpful Answer (12)
Reply to faithfulbeauty
Report
CaregiverFirst4 Mar 2, 2024
You may have already, but check on respite grants. It gives you Money to pay for a few hours at a time for yourself by paying for a sitter to be with the one you care for.
I do and I use it to go dancing once a weed for about 4 hours. It is good and allows you to meet new friends both married and single. These are senior centers that have live bands and most no alcohol juse good clean fun.
It's not harmful and very food exercise as well as having good conversations that take your mind off of everything else for a while.
Its like having an electric car, it doesn't take you very far but its fun to drive while your doing it...knowing soon as you get home you still have to plug it in again...but the time was great.
Hope this helps...it is my escape and well worth it..I know what is waiting me as soon as I get home and walk in the door. But, you get to forget it for a while, while you refuel.
I had a sit down with my pastor about the dancing and where it was at and he told me he had no problem with what I was doing. Its just a break you need.
(1)
Report
I forgot to mention I go to bed and get plenty of hours of sleep but I find I still wake up exhausted.
Helpful Answer (8)
Reply to brandee
Report
faithfulbeauty Mar 2, 2024
Same here and I have started having nightmares like I did when I was a child.
(5)
Report
1 2 3 4
Ask a Question
Subscribe to
Our Newsletter