At 6 mos I’ve already hit my wall. I know life struggles are good for you and I might even learn something about myself and life, but currently I’m barely keeping my head above hopelessness. This question is about battling your emotions about caregiving. The physicality is doable, it’s the stress of trying to “figure it out” — the mother daughter dynamic, the reverse of roles, am I doing it right, do I want to continue. I’m wondering if those that have done this have had an epiphany where everything makes sense.

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I posted earlier but I would like to add to my thoughts.

People in our lives know us very well. Listen to them. Observe their body language.

My husband, my children and others lovingly started telling me about changes that they saw in me.

It started off with them saying little things like, “I miss your smile. I miss hearing you laugh.”

Then I heard, “You no longer have a sparkle in your eyes. You’re constantly preoccupied with your mom.”

It hurt the people who love me to witness the life drain out of me.

Some of the most honest comments were from my daughters saying, “Mom, YOU are NOT the same age as GRANDMA! You are withering away just like her.”

They weren’t being cruel, perhaps brutally honest which is really a kind thing to do.

They cared enough to tell me the whole truth.

It’s true, by that point my entire purpose in life was only to serve my mother!

I look back now and wonder how I survived. I was pretty badly broken towards the end of my caregiving day.

I strongly urge you not to let things go as far as they did with me.

It isn’t healthy for me to relive my experiences over and over and I don’t wish to be extremely repetitive and drive everyone on the forum nuts. So, I force myself to stop at a certain point.

I learned a lot from listening to people who were genuinely concerned and had my best interests at heart.

There will also be people around us who will complicate matters.

People who only add misery to your life don’t deserve to be in it. Drop them like a hot potato!

Don’t bother to waste your time on trying to sort it out if you have already given others a fair chance. We can’t control how others feel about a situation.

Continue to reach out. A support system is important.

Give yourself the love that you gave away to others so freely. You deserve it.
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bundleofjoy Feb 2021
i loved your answer, need :).

i hope you’re well! :)
let’s live our 1 life to the fullest!!!! :)

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I do think we are put in situations to learn from them. I learned I was not a Caregiver. I don't have the patience and I overwhelm easily. So I placed Mom in an AL. What else did I learn, is now I have walked in another person's shoes. I used to think, why did so and so put their parent in a home. They can care for them. Yeh, maybe when they can do for themselves. Not, bathing, toileting, dealing with the paranoia, and the wandering in the middle of the night. Dealing with a desease that has no rhyme or reason. You think you have finally "got it" and then they do something so off the wall. Its like taking care of an infant again, and we know how that was and we were younger, but this one is bigger and stronger and we are now Seniors too. The stress of 24/7 care.

The best thing was placing Mom. My house is boring. I am not an entertainer. My house is a split level with 3 flights of stairs. At the AL Mom could walk all around the building. Sit in the common area with others. Enjoy the entertainment. The NH, was just as good only it took more pressure off of me. I don't regret placing her there.
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NeedHelpWithMom Feb 2021
So refreshing to see you and several others on this forum who post that they DON’T regret PUTTING their mom in a facility!

Thank you for sharing that.

I gave everything I had to my mom. I thought that I was doing it all out of love. It nearly killed me!

We start to just go through the agonizing motions day after day.

I am happy that you put a stop to your situation and that you weren’t as lost and confused as I was.

As most everyone knows, I cared for my mom with Parkinson’s disease in my home for 15 long years! It becomes unbearable to do.

I regret NOT placing my mom but honestly, I don’t even know if she would have agreed. It may have been a huge uphill struggle.

Many of us have dealt with horrible struggles in life, haven’t we?

Just wanted to let you know though that I smile inside every time I see someone post that they DON’T regret placing a parent in a facility.

People need to read that placing a parent is NOT the end of the world. Keep sharing your positive message.
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My AHA moments came with both mother and MIL when I got sick with cancer and neither one of them showed even the slightest concern. In fact, my MIL was VERY disappointed that I didn't die.

That's kind of a big one to get over. So I just went grey rock with my own mother and 'black rock' with MIL. I simply will never see her again.

People don't 'get it' and I have to take some grief from family/friends who don't understand, but in the end, there is exactly ONE PERSON taking care of me, and that's ME. I'm useless if I don't watch out for myself.
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Oh my gosh, you are a lot smarter than I was in my caregiver days.

I had my mom for 15 years in my home. Mother and daughter dynamics absolutely change.

Caregiving is a huge responsibility.

There were days that I felt completely numb. I am not kidding. It was either go numb or go bat sh*t crazy.

I was afraid to let myself feel things that deeply.

Not feeling was a protective measure so I could make it through another day.

Oh, I took great care of my mom, but I totally neglected myself. Don’t repeat my mistake.

I did seek help from a therapist which helped me gain a clearer perspective on my situation.

I was incredibly relieved when my caregiving days came to an end.

Don’t second guess yourself. Trust your instincts.

This isn’t about a lack of love. You can show love for your mom by acting as her advocate.

Don’t ignore your inner most feelings. Start considering other options. Check into suitable facilities.

Best wishes to you and your family.
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Panyang Mar 2021
Wow, your experience reflects mine exactly, thanks for writing it. I'm going over 15 years as my mother's caregiver as well, and yes, the dynamic was indeed drastically changed. I am beyond exhausted and almost suicidal. How did your caregiving days come to an end? I still haven't come to my own reckoning, but the damage has already been done. So tired.
My epiphany was the realization that I couldn't do it any more. The constant struggle turned me into a stressed and angry woman who was no longer able to provide the kind of compassionate care I wanted my mother to have, plus it was causing me to doubt the truth of our previous relationship and love that I felt.
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LexiPexi Feb 2021
If I changed the word "mother" to 'husband', this could be my post. It's been a long journey with my husband being diagnosed with Parkinson's disease in 1999. He is now in stage 4, has dementia (thankfully not LBD), and has become blind. It's been eight plus years of full-time caregiving. I can't even remember the past/good times anymore. I no longer recognize him and the wonderful relationship we once had.
I will be honest and say I read 11 answers and then cried and sat at the table with my head in my hands. It was 10am and I still hadn’t gotten my mother out of bed and was feeling like I don’t care if I do or don’t “do what I am supposed to do”. Don’t feel bad that I cried. I am actually happy for any real moments like that. As notgoodenough said — feel what you feel. I can’t do what’s right for me if I don’t take a moment to “be curious and see what is here” (something a meditation teacher said). I went thru menopause in my 40s so I will say that I have not had the intense roller coaster of emotions that I used to have. This situation has definitely awakened some intense emotions. I cried for the epiphany that this is going to be a thankless job. I may get to dislodge some blockages from childhood traumas by confronting this person that is living in my home (btw— she doesn’t have dementia) or I may be lucky enough to let all the suffering go and just magically grow into a more patient person. Hopefully one that is wiser and doesn’t do the same to her children. I want to respond to you all individually because you all said something that touched me and/or helped me see something different. My epiphany is don’t suffer alone in silence. Express it, let go, and move on to the next moment. I cried then got up from the table and for the first time in weeks said something pleasant to my mom. I soaked in the feeling that I love to cook as I was making her an omelette. I breathed a sigh of relief that I don’t have to go to work today. I don’t have “to do” anything. I quit my job a month ago. I could blame my mom for this lack of income but I’m actually so glad I got pushed to the point of seeing how much I hated my job. I’m also being pushed to the point of realizing I don’t want to be a caregiver. I’ve been walking thru a lot of anger which for me has always turned into depression. For now until the pandemic is over she can stay under my roof. I have an aide come 3 to 4 days now — she acts as more of a companion— plays cards all day with my mom and serves her 2 meals. This arrangement works within the budget. I may start spending her savings to get someone for the other 3 days. Maybe an agency person that costs more but they tend to do more personal care, laundry and picking up after the LO. The last agency person didn’t interact with my mom much other than to wake her up when she dosed off for too long so she would sleep the night when I took over. She would also harp on her to do her exercises. My mom is not doing anything to stay mobile. Prefers to sit in her wheelchair all day and have people wait on her. She even says this out loud to the friend she calls.
I think I will change my title from caregiver to landlady, financial advisor and shopper. Focus on the things I’m okay with doing. Push off the things I don’t to more qualified people. It’s all still cheaper than a nursing home. If this drags into a year or more and she continues to do less and becomes more of an invalid a home is the best choice. I won’t miss her.
I started to think what I might say at her funeral. I couldn’t think of anything nice. A sure sign that this is not the right choice for me.
Thanks all for sharing your experiences!!
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Kumi1Kiwi Mar 2021
Thank you.. ♡
One thing you do learn is that this is not a typical caregiving experience. It requires 24/7 attention to the LO. I never did say “I get it, I understand this struggle”, because I never did. No epiphany. What you learn about yourself, DW, is that you're not Wonder Woman. You need the patience of Job, and the compassion of Mother Teresa. You need endurance, creativity, and knowledge of the disease. Who has all those qualities? And you need one more attribute. It may be the most important of all. You say you've already “hit the wall”. That's the other attribute; knowing your limits, knowing when to say when, I give up, I can't do this anymore. The stress and hopelessness of being a dementia caregiver can eat you up. What is your plan now? Have you tried home care, or adult day care? If you have and nothing worked, it may be time to look for a care facility for your LO.
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jacobsonbob Mar 2021
...but what IS a typical caregiving experience?
You certainly pinpoint well all that is involved.
I am really sorry to tell you that I don't think "whatever doesn't kill us makes us stronger".
I suffered a lot of anxiety in taking on my POA and Trustee of Trust for my bro, as well as negotiating his diagnosis, help with his move and etc. We were both "of an age". I was asked by him and encouraged by others that "I could do this for him" and I so WANTED to as he was the best man in my life ALL of my life. BUT, I had never done anything like that.
My bro is gone now. Did I do well by him and for him? You betcha. Did I learn soooo much? I sure did learn. I learned a whole lot more about IRS, SS, Spectrum Phone Company than I ever wanted to know. But in the end it was a whole journey through forests of anxiety I wish I never had to negotiate. Because he was already suffering the results of a diagnosis of early Lewy's, I could not count on the one certainty of my life, the Hansel for my Gretel. And as I said, it was a lot of anxiety. Sorry, but there isn't any upside to requiring so very much of ourselves. We TELL ourselves there is. There is what we did for the one we love. There is what we learned. And that is "some comfort". But, no. There will be no chorus of praise, no Sainthood, very little epiphany I think, and it will open to you a whole view of your own vulnerability, abilities, and hence a whole world of "fears".
So like all of life, you will be in the place we always are. Measuring the good of it against the bad of it, and limping along. A bit smarter, to be certain, but perhaps also a bit jumpy by knowing for sure how fast your life can be upended.
I wish you the best. I wish I had better news. And we are all different, so who knows. For you this may be "all good". For me? I am just me. I am proud and happy I did it and could do it. I would never do it again. I would see some Fiduciary paid to do it, and concentrate ONLY on loving and comforting my bro.
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Of course, yes. Lots of eureka moments! Usually just before the situation changes radically and you're back to square one.

Questions like this make me reflect on the past, and then I want to crawl upstairs and hide under my bed for shame.

I was vile to carers.
I was horrible to my mother.
I was bad at communicating with my siblings (they were worse).
I was clueless.
I was unreasonable.
I had the most ridiculous expectations.
I had no idea how to assess needs or develop a workable plan.



I now work in social care, a humble frontline reablement worker at last learning to do the job properly. If every person did this or something like it as a kind of national service, for a year or so between the ages of 18 and 30, it would transform society! And families would not be forever condemned to make their own mistakes :)

Do you have access to support groups, and/or training opportunities?
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Ohhh, the things I learned while caring for my Husband!
That is why I continue to come to this site. To MAYBE pass on a bit of what I learned, pass on some encouragement, pass on some of the "epiphany" moments that I had.
A few things that I learned...
Ask for help. People want to help they just don't know what to do or what you need unless you ASK.
Accept the help that is offered.
Realize you can not do this by yourself. No one can be a caregiver 24/7/365.
Hire caregivers. They are not there for your loved one, they are there to help you take care of someone. And if your loved one does not want the help remember it is NOT for them it is for YOU. (and it should be your loved one that is paying for caregivers)
Don't doubt yourself. You make a decision based upon the information you have at the time. If you are doing the best that you can then there is no reason to second guess yourself.
If things become unsafe. (unsafe for you or your loved one) placing them in Memory Care, Skilled Nursing, whatever is appropriate, is NOT a failure. It is responsible to know when you can no longer care for someone safely.
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