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?
Blessings to all of you on this journey, and thank you for the words of encouragement and understanding...
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 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.
We may be getting older but we are still young at heart!
When you visit New Orleans I would love to be your personal tour guide!
As a native of the area I know all of our local spots, not the touristy places.
We can go hear jazz at Snug Harbor on Frenchmen Street.
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 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.
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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
I’m in the EXACT SAME SITUATION
and it feels like it’s depleted who I am😞
I am “sandwiched” between raising my 12-year daughter & caregiver to my now 92-year mother. Plus I work a full time job. I feel like I’m taking care of two children. My husband helps with our daughter mostly. My life revolves around taking care of my mother, my child, full time job….. My employer was flexible to allow me to work from home 3-days.
My mother's caregiving came unexpectedly 2-years ago. She was an independent fiesty 90-year old, living alone & driving. Sadly heart event changed all our lives overnight. My mother has moved into our home to be cared for. Sadly my other sibling is retired, lives nearby & is NOT involved with our mother’s care. She “don’t want to do this & want to enjoy her retirement.” Thus, caregiving fell completely on me with support of my husband & daughter. It’s been an adjustment for all.
I’ve been so stressed with it all that I see a therapist/counselor weekly to help me cope. Now, I will start To vent to a stranger is helpful. My close girlfriends could not understand as they did not have that experience with their mothers. It became entertaining to them to hear as my mother is not nice at times to me. Slowly I drifted away from my friends as I felt not supported, encouraged, nor relatable. I’ve found the invites to get together are less due to “caring for my mom”.
I found through researching local & state senior care etc that I can get caregiver support. There is respite care through local & state agencies including support with an aide, help with errands for my mother, caregiver support etc.
Seek out the local Area Agency on Aging or Council on Aging. Seek out your State Department on Aging. Also look into Department of Social Services - Family and Social Services section for Adult Services or Seniors.
My “me-time” has turned into hair appointment & nails. I alternate weeks for these services so I get something done weekly. It’s my 1-2hours of “me-time”. Now I was not one for fancy nails. The lady saw how tired & down I always look. She asked can she give me a nail design to make me smile. For winter she did a snowman & snowflakes. Well, it made me smile. Even a conversation starter when in stores. It now turned into my happy time. Just a little something has made me smile. Now, I look forward to nail-time. ☺️. Also, long drives listening to music helps. It’s not something I use to do. It’s a new thing I do. So find your new something to do.
You have described my situation too. I wish you could meet me for coffee and we could talk about all this together! One positive thing I get from your message, and that is that you say you wouldn't have anyone else care for your husband. That is such evidence of love and you need to remind yourself of this every day. Many people would resent the responsibility and push the care of a oved one off on someone else. I miss so many things we used to do to have fun, traveling, exploring ... so that nowadays, just going by myself to the grocery store is an "outing", a change of pace. Don't give up on yourself - take that former mental passion and come up with small ways to keep loving your husband and yourself ... a kiss on the forehead, making him a special treat ... just keep on plugging away and remind yourself that this is one of the most valuable things a person can do with her life - giving so completely to another. Sorry to sound so sappy - but you can do this! Sincerely and with love. :-)
As uncomfortable as it may seem at first , it’s important to force yourself “back into life”. I had to learn to start slow with resuming maybe one or two familiar activities. My advice to you would be to force yourself to get out. Set boundaries to create balance so you too can enjoy life.
She passed 2 weeks ago. DH has slept 5 of the days since, literally does not get out of bed at all. He has things to do, he's the executor and he's dragging his feet on that--but the worst part is that he takes all uncomfortable emotions and segues them into anger. Directed at me. So I can share his depression? Thank you, no.
Yesterday the stuff hit the fan. He was supposed to go help move the furniture out of the ALF apartment and mil's home. He was gone less than an hour, came back home and laid in his recliner for hours. I was going insane, knowing his sibs were doing all this work and he was nowhere to be found. I finally asked him if he was going to get up and accomplish something--and he just blew up at me. I don't cry easily, but I did shed a few tears. I left. Wrote him a note saying that I was simply going to get away from him, for his sake. I was gone all day long.
When I got home at 9 pm, he met me at the door "where have you been all day". I replied "places". And I did not want to talk to him or look at him.
Kind of shot myself in the foot, since I was angry and hurt and I couldn't sleep. So I read all night and finally fell asleep about 5 am.
He's still in bed and it's close on noon. Looks like today will be another 'day of sleep'.
I truly do not know if he is ever going to come back to being anything close to 'himself'. He does nothing but watch TV and scroll on his phone.
Desperately needs therapy and a different antidepressant. I am trying to be sensitive to his anger, sadness and pain--but we he simply shouts at me, he knows that will shut me down.
We all know that in a marriage, one person's emotions influence the others. I'm struggling to keep my head above water.
I know that he is going through a lot of emotion, this mother was not a nice person and not a nice mother. He took nothing from her house, except a brooch that he had given her 50 years ago. I'm trying to be patient, but it's been years of dealing with his mom and her demands. It's going to take time to heal him, if he ever does.
CG in the home, in this case, was absolutely the stupidest/worst idea these 'kids' had. All 3 of them are suffering. Maybe when the inheritance checks start rolling in they will feel better-I've heard that can happen.
I moved from OH to IL to care for him, as he has nobody else that will and/or can. I left two daughters and four grandkids there. The youngest are just 5&8.
My brother is now 74, I'm now 65. He is literally twice my size. I already had torn rotator cuff, then in Dec I tripped over his bed frame, broke my hip, had three screws put in, and was only in hospital about 24hrs. STILL doing everything for my brother. Then he was sitting in the wheelchair so he could work at desk. Couldn't get up. So...bad shoulder, bad hip to get him up. Now my knee is bad, too.
He will not get any help in. He pays me, but it doesn't make up for the job he was adamant I quit.
Laundry all too often. He wears pull ups, but uses condom catheters, which I have to put on and they have a tendency to come off.
I feel totally depressed, stressed, and wonder if I'll ever be able to move back home while I can still enjoy family.
Sorry this is so long.
Your comment has left me near tears. I am a retired teacher with an 86 year-old husband suffering with dementia. He is not as far along as yours but is progressing. I find myself filled with dread for the future. Sending a prayer for you as you slug this out.