Has anyone ever lost interest in things you use to enjoy or were excited about because of caregiving?

its 1239 pm on a Saturday and I’m still in bed, so I get it! Husband is asleep cuz he is always asleep. Next big event is to get him up and changed without it being battle. And I feel paralyzed. Things to do and I would like to do NOTHING. Be alone. Sleep. Whatever. Isolated and alone yet not. He is here. My brother lives with us to provide help. My situation could be so much worse. And yet who am I anymore if not the wife who takes care of everything?

P.S. I wrote all this and then realized that I do not know if you are talking about a personal caregiver relationship (a spouse?) or work as a caregiver outside of the home.
_____________________________________________________

Yeah ... like 99.9% of us.
I appreciate you[r awareness] sharing your feelings and how you have and are currently handling them in proactive ways - counseling, reaching out.

I would say that it will support you to reframe your thoughts 'the damage has already been done' to a positive affirmation. What you think and say IS an affirmation (of sorts).

How can you reframe it? possibly affirm

"I'm (actively working on) changing to be the healthiest person I can be."
"I am hopeful. Where there is a desire to be whole and healthy, there is hope."

I used to write 10 affirmations a day (decades ago)
I recall one was 'I got out of bed today and took a shower."
ANY POSITIVE movement is a reinforcement to feel better and continue to move in a positve direction. What this did for me: It stopped the automatic negative self-talk ... I started looking at myself / my day / my thoughts in positive ways. This changed my overall 'mood' and gave me (more) energy to keep going in ways that supported me / my well-being.

I understand therapy is for the well heeled. It is unfortunately a luxury that most of us can't afford - perhaps those who need it most. In any case, see if your health insurance company will help with mental health counseling (mine did although the issue/need was grief counseling).

Widen (?) your circle of support:
Church / meditation groups
Go on-line (ch out Rick Hanson-Wed nights Zoom meditation) I am in that group every week.
Check out Meet Up groups
Join groups / clubs / associations (I took a birding / bird watching class last month).
I used to prefer group therapy vs individual. Plus it is cheaper. I did better with the group feedback.

Realize you are NOT stuck. You may feel like you are moving through molasses and taking 5 steps back from the 4 you took ... although you are moving forward even if you take 5 steps forward and 4 steps back. That is ONE MAJOR STEP FORWARD. Growth feels like that. If you do affirmations or give yourself a 'pep talk' (often), you will start to feel /see that you are moving forward. And, if you don't . . . stay in present time: "I feel xxx right now" without the judgment. And then go do something you want to do anyway - regardless of how you feel.

Believe me I know. I, too, am stellar aware of setting boundaries and I, too, was exhausted due to responsibilities (unavoidable, based on what I took on for a friend-companion). The key is to find a balance along with rest, relaxation, meditation, and moving / exercise. Get that energy out. Swim, do yoga, or like me (at 72), I still slow jog. Go dancing. Anything to shift.

Be gentle with yourself.
Take small steps.
Journal / write.
Go out in nature and see the beauty - the wildlife - the colors - even the dirt (well, for me ... I get excited over the colors in rocks and sand). When you shift your attention, the rest of you will follow.

Do keep us apprised of how you are doing.
You are not alone. And you are in very good company.

Warmly, Gena / Touch Matters

Yes I am experiencing this and trying to get back to caring for me

Yes, I have been my Moms caregiver for 2 years now and have lost all contact with my friends with the exception of 2 that I speak to on the phone every few months. Since being out and about is no longer a privilege I have found other things to do, like sell vintage things from around here online and painting on canvas. I have never been artistic but have found utube videos for beginners and mine actually look good. Nothing like the instructors painting but goo enough that my daughter has taken them all and hung them on the walls inner home. Baking is another new thing I have started. I watch a cooking or baking show and wow that looks tasty and rhe next thing you know I have ordered a kroger delivery and made it myself. I was right it does taste good. So I guess I am saying is find something in your environment that can keep you active.

I love to craft, sew, and cook. Since my husbands illness and now homecoming, I do not have time to sew. Well, I do have time after I put him to bed which is when I usually sewed. Now it seems I am so ready to call it quits for the day that I have not resumed the sewing. I have taken up things that I can do while sitting to recoup from the day.
I am now doing crafts like cross stitch and even a game on my phone,(just like the kids) I have also taken on an order for a sewing project to possibly get me back in the sewing mode because I will sew since it is for someone else instead of me.
You don't have give up of stop those things you love to do, You may just have to modify or rethink.

This has happened to me. I feel so exhausted when I do have time for self care I don't have the energy to do anything. I can't even get up the energy for a walk on the beach or have a massage, my favorite things.

I absolutely know what you mean and am going through it in the same way— biweekly therapy. That is helping but it mostly feels like I’m drowning and I can’t remember how to swim. I don’t want to do much of anything anymore. I do sing in a choir and I am substitute teaching in the school I retired from. Occasionally see a friend or two. That’s about it. It hurts a lot. Thanks you for your message and I feel your pain.

I’m going on year 11 taking care of 2 parents! My Dad is now in late stage dementia and my mother is barely mobile. Even though I eventually managed to get help , it took me 10 yrs to get some amount of freedom. First a half day, then a day, then two days, etc. In between, emergencies, hospital stays, falls, their Dr appts, etc. happen constantly disrupting what you think is going to be better. It took persistent time and energy and finding bits of money here and there to put a team in place and be able to back away from direct care which just happened this year! Even now I’m still having to do things for them that take 20-25 hrs/week. Just to get to where I am now has been a grueling, exhausting, oppressive torture. I don’t feel like doing anything. I have healthy habits and lots of interests but I get derailed a lot by care responsibilities even though I do less now. My husband has had the patience of a saint. He’s suffered too. We even lost our precious little dog in all this because he had an emergency one day the same day as my Dad. I’ll never get over that. I’ve grieved so many losses- financial, things we enjoyed like sailing, golfing, cycling, traveling, my health. I not only had a great full life that I worked my tush off for, but a professional practice, and property in another State with a house plan that we may never be able to build now. I haven’t been able to work since 2014. My siblings live in the same city as my parents and my husband and I are 70 miles away. I commuted, often getting stuck there for days on end- for years on end. We lost a decade of our life and are starting on the second. It’s true everyone says get out. Obviously we want out! But this is complex. Especially with 2 parents. I’m getting there. NO ONE knows how difficult it is to get out when parents didn’t have a long term care plan and you have to take care of all that for them. I’m more skilled then the average at doing these things and it took even ME a long time!
I also practice some of the things said here. I focus on the future, I write, I still exercise. I also start each day saying “thank you for this day… just give me time and health, I can do anything.., the only way out is through.., and I end each night trying to do what I’ve heard a physician say - “what went right today”. I know it’s temporary. All that said, it doesn’t change the exhaustion, sadness, worry about myself and my husband, resentment toward sibs who are vacationing and unaffected (who NEVER try to relieve us), anxiety over money, the feeling of being imprisoned, and the days when I want to run away to save myself. I hear you and feel you. Hang in there. Do whatever you can to get out in a way that you feel whole and at peace with what you did for your loved one. You’ll be ok leaving if you can manage that. I’m still working on it. 😘

I lost interest in life in general after my husband died. My job was drying up and all of the good employees were either fired, retired or pushed out and replaced by people who were about themselves. I knew I was being pushed out when they only wanted me in the office two days out of the week. Later on, I was on the hit list for losing my job.

I didn't know what to do since this all happened three months after the shut down during the pandemic. Some days I wouldn't get dressed at all and took to looking at YouTube all day barely eating. My health got worse, and I started having heart problems from all the stress I was under. My only beacons of light were my daughter, grandson and cats.

I'm still struggling and have made some awful choices in jobs. I'm back in the caregiving bs and it is horrible. I've lost my confidence in ever finding a full time job again that I liked because I am considered old by today's standards. They even have a site called jobs for old people. The jobs barely pay minimum wage. It's a painful realization when you are tossed out of a job you enjoyed for years and then you are left with nothing. My apartment needs to be cleaned and I feel guilty on most days. I manage to keep things picked up and put away, vacuum occasionally, but I'm no longer bursting with energy. I feel so worthless at times like a toy that no one wants anymore.

If I hear one more time "you have to take care of yourself" without a follow up of: "how can I help you do this?" I'm gonna scream!
This is not my first stint as a caregiver. First time was in a major city that had a lot of support systems in place. Now in a rural region and there's hardly any support systems here. I now use Zoom dementia caregiver support groups-it's the best option I've been able to come up with. I know I'm burnt out. Not to the point of harm. But, I so understand the comments here about isolation, not wanting to do anything other than vegetate for awhile. Not motivated to enjoy my hobbies. Yes, I'm aware that that's part of depression-trying to find a competent therapist to help with that here is about as hard as it gets-and I've been in therapy before. So I muddle through another day, knowing how badly dementia ends, wondering how awful it will be here.
Both times as a caregiver I had a motivating carrot on a string. This time I think about traveling and the first place I would like to visit when this is over.

I’m experiencing this now, and have been for several years. I’m five years into being a caregiver for my mom who is bed-bound and 100% dependent.. The family and I do everything else. I have no motivation and make no time to do many things I used to love. I have a dog that takes a lot out of me (on top of the full-time duties of caregiving), but I find spending time with her helps my mind. I have no choice but to get up and care for her so it forces me to get moving and get outside with friends who also have dogs. Fresh air and those friends I otherwise wouldn’t see are a big part of staying sane. Without my dog I think I’d be more likely in bed and depressed on down time.

Yes definitely. I retired over a year ago and thought finally I can relax but no. My mom got sick and I ran her from one doc to the other until it turned out to be cancer. Not even two months later she passed. Meanwhile dad was having memory issues. I’ve been looking out for him with many doc appointments and home care assistance. My two sisters do nothing but complain and accuse me of not doing enough, stealing, lying, call me nasty names, and now saying I’m erasing mom from what is left of dad’s memory. Dad is in his home that he built but with the health care and other bills he will be out of money in less than a year and will need assisted living soon as his dementia is getting worse and I will need to sell the house but my sisters refuse to accept that and insist he stay in his house. At this point I need to get a lawyer involved and do what is needed for dad. I dream of the days where I can finally relax and do what I want before I’m too old to enjoy life again.

Your post actually opened my eyes to the fact that I'm having these same feelings. Even though my father has passed and my mother is in an AL facility, I have never been able to go back to just being a daughter. Once a caregiver, always a caregiver...it permeates the heart and I have this constant awareness, a helplessness, that just will not leave my soul. My husband has said that he can't figure me out anymore...sometimes, rarely, I'm up, then I'm just down for no visible reason. I'd rather stay home now than go out. I have no romantic interests and am unable to be intimate, even when I want to. I can't find my love for the hobbies I used to enjoy. I force myself to walk every day, but only because of our 2 dogs...bless them! I know from reading these posts, that I need to get control over myself. Crazy that the idea of depression hadn't dawned on me until now. As my mother says, we will all have many jewels in our crown someday! And, another cliché, today is the first day of the rest of my life...I'll start by taking it one day at a time.
Blessings to all of you on this journey, and thank you for the words of encouragement and understanding...

F_Beauty, my heart hurts for you! We all have been or are there. I'm 70 and my 92yo wife is a sweetheart but a handful. Of course, that persona changes with every nap. I felt the same way, and others are right, it's depression. For me, I am with her 145ish hrs a week. The other 23ish hours I have another Caregiver to watch her. We have no other family near enough to help. All the so-called Friends we had won't even grace our door anymore. They just don't understand how to be around a person with Dementia. They're still human! Hope you are benefitting from therapy but I found just talking about it made me feel more like I was trapped. I can no longer do the things I love because of time, so I looked for another passion I DO HAVE TIME FOR! Is there something you've been WANTING to do or learn? Something that will reinvigorate your mind and bring excitement back to your life? 2 yrs ago, I started Line Dancing at the local Senior Ctr. We all need the exercise to burn off the stress. I LOATHE walking by myself. Line Dancing is my exercise 2x a week now, 1 hr classes. I now have people I chat with OTHER THAN CAREGIVING, real adult conversation. I enjoyed learning and started practicing in the garage whenever my wife takes a Nap. I now also teach and lead some of the dance routines. It has filled a void and given me a new purpose and eases the Caregiver stress. Try to find something NEW to engage in and the limited time you have will allow! My VERY BEST to you!

I feel you “the damage is done”. I got my mom resettled and thought i was going to jump back into my life. Nope. I echo everyone on here. I’m glad i found this forum and all you beautiful souls.

Yes, good to know I'm not alone. I'm actually a bit scared by it. I really don't enjoy much anymore and feel uninspired to pursue any creative outlets. Saw a therapist who was good, but my mother's doc has been trying to get mom on an anti-depressant because of her negativity and lack of interest in anything but reading. She's a fantastic fine artist. She is deeply critical and can't help herself, no matter how often I beg her to back off. My husband is thriving, and tries to ignore her, which works not at all. This position was not what he had in mind for his retirement years. Thanks for bringing up your concerns... hopefully, we can figure something out! Best!

Yes! It is to the point that I don’t know who I am anymore. Friends have faded away. There is no time go pursue anything anymore. I feel like the guy at the circus who is spinning plates running back-and-forth trying to make sure they don’t fall. I am so tired. I know this doesn’t help you, but I had to get it out maybe even for myself. I wonder if there will be anything left of me when Mom‘s journey is over. The one thing I cling to is the God is on the throne. He is in control. I feel his nearness and rely on his strength.

I’m totally burn out. I do nothing I use to do. I don’t even call anyone. Nothing new to tell anyway. I’m sorry you are feeling that way but I sure know how you feel. I hope your day gets better.

Not sure what's worse, to no longer be interested in things you love to do, or long for doing the things you know you love to do but also know you will never?
Going on 6 years giving care for my spouse, I see it as various forms of depression as reality slowly sets in.
I would tell you there are free state agencies to get help, but I'm not one to give advice since I never took it from others. One of these days..
Try googling: 'your state' sponsored depression counseling, and see what comes back. Cheers...

When Hubby and I took care of my mom for 5 years when she had Alzheimer's, I made time to do things that I enjoyed, sometimes exercise, and sometimes I'd exercise my right to write. I'd jot down memorable things that would happen, sometimes funny and sometimes not so funny. I've always enjoyed writing, and it helped to lessen some of the stress of caregiving. These observations became a book: "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." In my situation, my mom was a wanderer, so exercise/walking (following her down the street) was an inherent part of caregiving. If you can, find some time during the day, even if it's a few minutes, to do something you enjoy: exercise, artwork, reading, emailing or talking to a friend, watch a sitcom, etc. You might find that you can "find" yourself again.

Yes. Also because the inevitable is looming overhead. Grief for what is no longer and can’t be fully processed. I try to focus my mind on the vision for the future. That helps me stay positive and also proactive on the small things I can do to stay engaged in living my own life.

My Father is a double amputee and has dementia. I have been caring giving for him since 2019. My life feels lost to me. I keep trying to hold on to what used to be such a full passionate life. Now I feel I have nothing. It is 100 hundred times harder than caring for an infant. Family tries to help but need to care for their families too. So it is sporadic. I'm waiting for 8 hour nursing care to start in my home so that I can at minimum try to get a remote Jobe part-time while I have some kind of help.
Life is so narrow I feel like the fence I walk on is falling apart. I hope for some relief soon.
Everyone hang in there, I wish and pray the best for all caregivers who need more help. It is always needed. We do get the feeling it is easier to leave us with the burden because we care so much. But we need people too.

Beverly
Caregiver

Dolly,

I’m going on 9+ years as a caregiver of my husband who was originally diagnosed with A.D., but was later diagnosed with Lewy Bodies Dementia, because he was kicked out of a clinical study for not having enough amyloid plaque, (long story).
Before his first diagnosis, I walked regularly, sang in a choir, rode a bike, quilted, gardened and loved all these
activities. Long story short he destroyed
my bike (after paying for a tuneup),
I found I no longer felt comfortable leaving him at night for choir practice, gardening with him has become mostly impossible because even though in his demented mind he is gardening guru, he has lost any memory of how to plant and care for a garden. (He’d never read what any given plant needed, I was the reader/facilitator), dementia hasn’t helped this.
The only thing that remains is quilting, and often I’m too tired to do this, or I’m too distracted monitoring his endless hours of crazy behavior.

So no, you’re not alone. I’m sure a therapist would say this is a form of depression. It’s so easy for therapists and well meaning family members to
say get out, take care of yourself. The nuts and bolts of actually being able to
do that is a lot tougher, especially in this post-Covid world where a lot caregiver relief programs have evaporated.
I have no easy answers. Best of luck to you.

You are suffering from ahedonia, often a symptom of depression. Does your therapist accept insurance? Can you ask for a discount? Sometimes you can add group therapy every other week more cheaply. This being said, at least got to a caregiver support group, even if you don’t feel like it. I find music helps, songs from teenage years for example. Lifts spirits at least temporarily. Audio books can take you away from the dumps. Been there so I know what helps.

When anyone loses interest in the things they used to enjoy, they are definitely suffering from depression. Being in counseling and perhaps medication will help you.

Yes

I had recently retired, got a great PT job, ran for City Council in my town, and established a YouTube page of videos. I was going to night clubs, recording bands to help with their promo. I had a spotless house and lots of activities with friends. I even baked cupcakes and spread them among friends during the pandemic.

When my Ex crashed and burned from an apparent mini-stroke, it all stopped. I had to quit my new job, lost my Council seat by 700 votes (after getting 6,000). I was overwhelmed with helping him clean up his hoarded condo, to get it sold. My house and garage are now filled with his junk, and he doesn't lift a finger around here. To get him into a VA home, I had to arrange and drive him to numerous doctor appts, make calls, fill out forms and cook and do dishes constantly.

I miss my musician friends and their concerts. I miss working on videos, doing photos and side jobs. I'm stuck inside my now cluttered home and hate it. Every time I tried to get away a few days, I never could.

I used to be so excited about being invited to so many events, dressing up and being basically a local celebrity. Now I'm old and tired. I'm never happy about much anymore. I pretend to be happy as the VA stalls and drags out housing a Vietnam Combat Veteran with no siblings or family left. I've been at this 2 years in December, and I get so depressed I can't even think.

I'm doing a Trust to make sure nobody ever gets stuck being a caregiver for me.

Now that my very difficult MIL has passed I am watching my Dh very slowly coming back to being 'him'.

I hadn't realized how severely the stress of CG for his mom had affected him. He was (well, still is) very, very depressed.

But the night after the funeral, as we sat around with all of our kids and the men began planning a very epic golf weekend on some premier courses--he came to life! He CAN go for a week for a golfing trip with his favorite guys! Seeing and hearing him be enthusiastic about something was like music to my ears. I hope he spends a lot of money and eats too much and has the greatest time.

He's been so depressed for so long, I am not sure he will understand how great joy can feel. He was a dutiful son and brother and that is almost all over now. He is the executor for his mom's estate, but it's going to be fairly easy.

The last year, all he did was care for his mom, run to her house every time she fell (frequently!) and try to deal with her ever changing moods and demands. Yes, he did get some golfing in, but hanging over any and all activities were his mother's needs.

I have great hopes for him to be able to move on and find the funny, nice guy I married underneath all the FOG.

FB, I have seeing a therapist since a couple of months into the pandemic, because I realized I was falling into a huge trough of despair and anxiety. I have struggled with depression since I was a child and have been successfully gotten it treated with a combination of antidepressants and talk therapy.

As you may have seen on another thread, a couple of weeks ago, but DH had a catastrophic internal bleed after minor surgery. In the aftermath, I realized that I was not doing as well as I thought I was.

I went to see my regular doc last week (he was also seeing DH) and he asked how my "nerves" were. I told him I felt like a violin string that had been tightened to the breaking point. I startle easily. I'm irritable.

After a week's reflection and two long talks with my therapist, I've decided to go back on my old AD medication, which has served me well in the past.

I would strongly urge you to consider medication as part of the "tool kit" to treat depression.

I am at the point where I have to force myself to do anything for myself. It is a chore. I belong to embroidery guild, and stitching just falls by the wayside now. I'd rather sleep or get something done around my own house. My mom has been in memory care for 4 months now, but I still go over every single day and am the caregiver of the house that she ran into the ground and the 3 cats she left behind, one of which required an extensive surgery and multiple dressing changes and rechecks. (We are almost done with all that.) So in essence I am still working full time for her.