When do we know when it is time (as a caregiver / carepartner) to stop trying so hard?

Checking on you. How are things going? Hope things are going better for you. It’s hard to continually care for someone with Parkinson’s disease.

Nanabinx: You're very welcome.

You're right, we can't fix the life cyle, which inevitably results in deteriorating and death. We can't fix natural processes. We can support them, but we can't fix them. Some times we are the reality check for the carer recipient who for whatever reason is having trouble accepting and moving forward with their reality. As carers, I think it's a good and worthwhile pursuit talking about reality, and staying in it. That way we can be alot more realistic and useful in our caring role.

This is a hard one to put answer 🌻 First I'm a person with PD...Yes
I have just had to start letting my
Husband do more for me. So I know it's going be harder now.
I think this can only be answered
Has he had enough. Does he want
to spend what time he has left
At Home with Family who will
Love Talk & Stroll with him till
His time comes ❤

When is enough enough? NOW! My husband and I are in our late seventies, have no medical issues to speak of, married almost 60 years, and reading your weekly schedule made me catch my breath. Wow, that's more than normal people half your age would do. Maybe he's trying to prove to you that's he a trooper, and he is, but enough is enough. If he can't remember that he's not suppose to get up by himself, he probably won't remember that you've cut back on many out-of-house activities. Just be there for him. Love him. Make these final years happy and comfortable. You don't want to feel resentment toward him b/c you're falling apart from exhaustion and not having time for yourself. He wouldn't want that either. Relax. Live for each other, not just for him.

The time is now, friend, to stop some of the care you're doing for him. (Your soul is tugging at you,) & it means: 'enough of this for me'. So let your mind drift to the enjoyable things you're going to be doing...& adjust hubby's schedul RIGHT NOW. Little by little start to live your life, (it's not a sin, nor neglectful, it's human). Quietly make new arrangement (& don't discuss it), cuz it will mess up your head. I knew exactly when I would need to shop less for mom, or later on I cleaned less, & later: drive her less. It was a great relief to not force myself to do what I needed to stop. God knows you need to be free.

For my situation, it has worked for me to pack my home of 11 yrs up, move back home at 55, 4 hours away, back to my hometown and put my things in storage for a year and live in with my parents. My scenario is my 78 yr old Daddy trying to care for my 78 yr old mom with dementia. I went back and forth for 2 yrs...as long as I could, but after 2 yrs...realize my Daddy cant do this anymore. My Mom is sweet, not mean and she is not demanding, usually. The issue becomes u just sit here all day in a routine in the home. She likes to go on rides...out to eat...but outside of that, she is much more comfortable in her home. We play card games, paint, have daily devotions, she enjoys the yard, esp our backyard...foliage, flowers, grilling. We all sit out there and relax, daily. Once in a while, I invite their friends over to grill...like another couple...but my Dad can live his life and I can live mine because we can take turns coming and going and even here in the home, we can take turns hanging out with Mom. It brings balance, but I can tell u after living this out 8 mths...already, it still is taxing on both of us. The funny thing is, you would think us both being here would enable us to go be involved in other things...but until I lived this...i had no idea it would not play out like this. See, living with the person, regardless of how sweet and cooperative they are, it is still your Mama or your Daddy or your spouse and as they deteriorate which is a harsh word, but lets just be real and deal, this is reality...so it is best not to fluff it up..., but as they change...parts of you grieve silently...then, you find yourself grieving on varying levels...and u have no desire to go be in a weekly bible study or social event. You have no reserves left to interact and you honestly dont want to be there right now because it is easier to live life with your loved one and let that smaller world be your dwelling place, for now. I want no commitments outside my home, buT...let me tell U...What means the MOST to u is when that random friend calls u out of nowhere and says, "HEY, i have extra tickets to a play...wanna go. I thought u may need to get out." GOOOO!!! By all means GOOO!! U find that when someone randomly thinks of you on their own...and offers a random nice outting...it embraces your SOUL....and is all u need. People who send cards...omgoodness...it means everrything and far more when it is random because no one wants to be smothered with attention.
My Dad and i talk about "soul care"...
Sometimes Dad goes onto the other side of the home for a few hours to get away or I do...but when I do, Dad doesnt stay glued to mom, but he is visible so she knows she has not been left alone. Other times, we join her...but we make sure mom has something to do...tv, magazines, which she loves even if it is new everytime she reads it...or mom loves watering plants and folding clothes and she loves to roam the home room to room looking out the windows...and she likes to chk on things. We keep it sweet and simple. She loves to sit and listen to aidible books and she snoozes which is good for them and healing because it takes a lot of energy for them to just even process their days now.

I am getting my own place in a year...but am taking things slowly. Just having to pack up my life and relocate was big enough for me right now. I have no desire to set up again immediately and reestablish myself...so i kept the main thing the main thing...which is Mom and supporting Dad...later, I will get a place which gives me something to look forward to. Dad will be fine because i will be in the same town...not hours away as before trying to chk on them.

It may be healthy for some of u...to go ahead and start dreaming and planning your life after caregiving even though the end is nowhere in view of your commitment. u remember as a kid...how u dreamed ahead and it gave u hope as a child?! Start a scrapbook of what u want your life tolook like later.

I have said it so many times before. These people are no longer the people they once were. Be happy and cherish the good memories but now it becomes hell for some caretakers due to the behaviors of the patients. When that behavior is becoming too much for you or too difficult, and IF YOU ARE BEING EMOTIONALLY AND PHYSICALLY HARMED BY WHAT THEY DO, and you can't find ways to stop the abuse, then you must be strong and REMOVE THEM FROM YOUR ENVIRONMENT BEFORE THEY DESTROY YOU. No one deserves that. Put them where they are cared for but away from you so you can live your life and have peace. There simply is NO other solution but this.

If you're inquiring, the TIME IS NOW.
Many of us wait and waited too long...until we're burned out, resentful, even angry.

Wisely: I see someone posted the Serenity Prayer

God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.

...take it to heart...for YOURSELF or you will certainly leave this earth before he does! Accept what you cannot change.
Latest statistic: 70% of caregivers over 70 caring for loved ones die BEFORE the person being cared for....a sobering wake up call!

Eeveryone is right you got to take time for your self at least 3 days a week and ask your husband if that's what he really wants to do everything day or he's just doing it because he thinks you want him too you have to talk to him and Medicaid and Medicare take care of a lot of things like care givers you can get someone to come every day the can help around the house take him to some of his appointments and buy groceries too so look in to that but you have to take care of your self and please tell husband thanks for his service the va also help a lot with different service so look into that too I admire your love for you husband may God continue to bless you hugs to you good luck.

He and his disease will tell you. Maybe you can find someone to transport him to and from the activities. It will give you both a much needed brake from each other. We have"CART" in PA. They are kind and friendly drivers. You can get info from your local Area agency on Ageing.

I complement you for being a loving and caring caretaker going above and beyond. Making your husband‘s life at this stage of the game to be the best life possible is what you are doing for him. A quality-of-life is what is important now. As you know this too will all pass and you will have no regrets My Dad when in the mid to later stages of dementia it was our goal to give him the best quality of life possible. He was always pleasant easy-going and thankful for all we did for him. He needed our help and we were there over a period of the last three years of his life. We have no regrets. A few things perhaps we could have done better. Compassion patience and love is what Dad needed and now your husband needs Keep doing what you’re doing you will not regret it. Right now it’s all about him. As it was all about my Dad and taking the burden of caregiving off of my Mom. Hang in there it will all soon pass.

This is a great, great question. Thank you for asking it.

Wow! You're doing a remarkable job thus far. But I hear you - I really do. You will know when enough is enough when you go to the Lord in prayer and the Lord, our God will answer. Prayers sent to you.

For me - enough was enough when my own health took a turn for the worst. I care for my mother for almost 8 yrs now. Before her it was my sister who had a brain tumor and my dad who had Parkinson’s. But the time caring for them was shorter than my mother. My mother recently went in hospice which is a great relief for me! But I still have to do many things for her. I’m not off Scott-free by any means! I have Non Hodgkin’s lymphoma now for 2 yrs. I am treating with chemo and immunotherapy. I try to concentrate on my own health, but it is never easy. And my mother tries to let me do what I have to do, but she always reels me back in with some sort of problem I have to handle. It is too much for me. If my mother gets any worse and can’t be as independent as she is now at 93 yrs old, I am going to look into hospice care in their facility or a nursing home. Once she can’t ambulate anymore, that is the line I can’t cross over to. Hospice can’t do 24 hrs which would mean I would have to take over shifts. And I can’t do it.

On another note - you say your hubby can’t keep his eyes open. WAs he ever tested for myasthenia gravis? This would be the ocular form of it. Since you see a neurologist, ask him about it. There is treatment for this. How is his swallowing? Can he smile? Just curious.

I hear you. I think over time you just start to wear out and you realize you can't do any more than you are already doing and possibly can only do less. It's kind of like a PTSD scenario, I hate to say it, where you know based on how you feel that there is nothing left in the tank. That's where I am at, and strangely it is making it easier to look for a care home for my mom. I know I did my best. Just do your best and give yourself grace. That is all anyone would ever expect.

When your loved one is gone, you will remember this huge effort you made, and your heart will be at peace. Try to take comfort in that. You are doing God's work.

First of all, God bless you. God bless all caregivers. Those of us at home and those of us with loved ones in facilities. It’s all hard. God bless the staff who work at facilities.

It’s been 14 years and counting of caring for mom at home. She has Parkinson’s disease. It never gets any easier. I am preaching to the choir with you. You certainly have your hands full.

It’s hard to know how to handle all of this. Certainly hard for the Parkinson’s patient and just as hard for the caregiver, just in a different way. I’m trying to figure it all out too. I hope we both find what is best for everyone involved. I don’t have answers for you but please accept my caring and support for you and your husband. Keep me in your prayers and I will say a prayer for you and hubby. Hugs!

Dear LexiPexi
It's clear you care deeply for your husband. I admire the drive and dedication you both have had in following such a creative and disciplined routine each week.  On the other hand, it doesn't sound like there is much time for you to do something for yourself or to disengage from the care role.

From my experience taking care of my husband, you go through many phases. As time goes on, you have to gauge what you need to be happy in your own life apart from his care. This is a very personal decision and will probably change over time. It sounds like you are ready for a change or adjustment in the effort you devote to his care, while supporting his desire to maintain this routine.

There are other resources (e.g., subsidized vans or hired helpers) who could transport your husband to some of these activities. Hired helpers could also stay with him in the home at times to help or support him while he exercises, or just to be there for safety reasons.
But, I'm sure you can figure these kinds of solutions out. The hardest part is deciding to do it. It does sound like you're ready.

Without loving yourself and your needs, you won't be able to sustain the situation. Start with looking on yourself with compassion and the rest will follow. This approach has worked well for me, and has enabled me to give my husband the energy and love he deserves. I wish you well.

Oh, such a good question.

I am sorry for your situaiton and understand completely.

There is a time to lift one's foot off the pedal. When my husband first got sick, I was on a full blown MISSION!!!!!!! I was wonder woman who would stop at nothing to make him better.

A few years ago, I decided that if no one was beating my husband or mother (yes, her, too!) or stealing their money, then it was all good.

Since then I do as little as possible for the maximum benefit. I place a great priority on taking care of myself because they never will and I can't help them unless I am ok. If I am ok, then life is good for them.

Now back to your question: When? Different in each case, I am sure, but know that it is necessary and common and you will figure it out.

Hugs!

Franklin2011 I love your clarity — “it’s beyond his capabilities now to help us sort through the journey”. That’s my new mantra. This has been the hardest thing for me to let go of, particularly when he still feels he’s making great contributions by doing things like “fixing” things that were not broken but now are, etc. I haven’t started with a therapist or support group yet, but am actively looking for both or either. Again, thanks for giving me a new mantra!

So many hugs to you. I have no advice. Dealing with this in a spouse is so radically different than dealing with it in a parent or sibling, I never feel even slightly qualified to respond to these posts. It has to be like grieving for your love, your best friend, your everything every.single.day. And they change and you have to deal with a difficult stranger, even if they are still pleasant. There are no words.

You may want to talk to an attorney to look at what assets you have and how all of that works with Medicaid, whether a division of such into trusts might be pragmatic, etc. The wife of a dear friend of ours has early-onset Alz. It has been at least 10 years, and he is now only about 70... but he had everything sorted out early in so that he wasn’t left destitute and his wife could be in care through Medicaid when he could no longer care for her (which he did at home until it wasn’t safe and she no longer knew him).

I know it it seems like one more stress. But it might help you to have a plan that includes help and reprieve, but also knowing that your future is protected as well.

Evaluate with him what he enjoys and wants to continue... his preferences.
Evaluate what makes it easier and harder to accommodate his preferences.

Take a week to consider what you prefer and want out of life... your preferences.
Evaluate what makes it difficult to accommodate your preferences.

List all the people, agencies, resources, and finances available to help... contact them! Get others to help with making both of your lives easier - transportation, bathing, respite for a few hours (so you can do things you want/need to do)…

His life is important, but so is yours. Make these years together workable and more enjoyable... not a burden.

I had a thought just now...Maybeee...u can find someone to also come into the home to teach art in house and u both take lessons together...Maybe some area of art u feel somewhat curious about and are willing to explore.

Ok...STOP ALREADY. StoP the flow. Sit back. Sit down. FIND THE PAUSE. Listen to what u wrote. He wants to live his life and does fine, but u r not living your life. You are living his life for him, not WITH him. If u were living your life WITH him, he would be living your life with you and you would be living his life with him. My suggestion. Try to figure out what your lives both being lived and shared should look like now...My suggestion is...find someone else to take him to these activities 2x a week...Keep the art and music class...and maybe do the dance class 2x a mth. You find something to enhance your life and time...a hobby..
or interest...or just go sit at the library and read and u will find yourself in the stillness 2x a week. Journal while there...read...relax...Find yourself again, but don't expect to find the same person. You have grown within and changed. Look for the new you. And...i would slow down the schedule and be more low key. It is not time to stop. It is time to slow down because he is. He may just be trying to keep making himself because he thinks u want him to more than u may realize. He may be trying to live up to the man he always was because he thinks that is who u love. Let him know less is more...Less striving and that what u truly love is yall together and what u have...not who he is...but who u r together.

Hope this helps at least somewhat. I
am walking this road with my mom. My Mom told me one day, "Honey, stop trying so hard. I am still here. Is that not enough? Just let me do what I can and finish this journey holding your hand. It's enough. Don't try so hard. Ive lived a long and full life. Just let me finish at rest."

All Humans acting as caregivers have needs and limitations too.

The Serenity Prayer
God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.

It's amazing your husband is willing to be so proactive in caring for himself, and that you have provided him the ability to get to his various activities. Being able to spend some real quality time together is as important as the physical aspect of his care. At this point, maybe taking a couple of those days to do something fun together and a day just for yourselves, separately, would be doable? Quality time might be treasured more than all the trips to and participation in various activities.
You have done right by him, and I know you'll still be doing so no matter what you decide. Best of everything to you both.

It will never Be Enough because it is Tough. Even after they Pass on, It is the Memories that you need then to Live with. Right now, My angel, You have this Heart from the Start, God Bless you.

I think it is the one thing I see over and over here, is our expectation that we can make this right, make this better, make this happy, make this good, make this not about loss but about change. And it doesn't work. I knew when my brother was stricken with multiple dx after a car accident of brain tumor, benign but pressing on medulla and ruining balance, inoperable and of probably early onset Lewy's, that with his being 85 and me 77 I could in no way take on his care. I love him fiercely, but I never considered for a second that I could do this. Were this my partner, and not my brother I guess I WOULD be taking on his care without giving it all that much help. And, again, I could not. I don't see how people expect it of themselves. For those who have had excellent relationships with the stricken loved one they feel they owe it to them. And if they have had utterly abusive lives with say a parent they have been trained to be the child who will literally do ANYTHING for a few words of praise that they are a good child, words that they never seem to hear, or hear only as more manipulation. It is very difficult for men I think, to stop. We see they cannot after retirement, and my own guy at 78 is on the constant run with dog rescue work. Struck down with something they STILL don't know how to stop. And quite honestly for me it is time for you to come to some peace with what YOU feel, what YOU need. While my partner runs all to heck and gone constantly with his dog rescue work I garden, read, cook, listen to radio and in general and quite quiet and contemplative, telling myself I SHOULD get out more while I can, yet with little incentive to do so. I think you need a come to god meeting with your man to say what you now can do and cannot. It is sounding to me like a heliocopter parent taking their child here and there and there and here constantly. Just my input. You will do what you ultimately decide is best for you, what you can do, what you can live with. Just saying I am in your corner. If 4 days a week are about him then at least 3 need to be yours. He will have to learn to love the True Crime Podcasts that keep me glued to my chair of an afternoon. Something like books on tape. Good luck. Hope you will update us. We always hear problems on the forum and almost never hear advice on how they are worked through except through the comments of others. Wishing you, one of the heroes out there, the best of luck going forward.

I’ve just reached this with my mother. She’s always been difficult but now is refusing to go to dr appointments and without them will lose the rest of her vision in her good eye probably in a couple months. I discussed it with her dr and he had a good point, as medical POA I can make decisions for her but no one can force her to abide by them. I’m tired of the verbal abuse truthfully. She just gave my husband a 30 min abuse session because he had to go feed her cat and tried to find the 2 month old glasses she already lost. No gratitude, just abuse. I think I’m done.
Your husband obviously has a will to live. But it’s a rough schedule. Can he go on a bus to his appointments /therapy without you sometimes? Are you just physically worn out? Can you get some help to handle this? Don’t ruin your own health in the process of helping him. Sadly you no doubt will outlive him and then be an invalid yourself.