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I am 75 and my husband is 84 with dementia, We have been married 55 years. He is self-sufficient, but can not be left alone. (Leaves water running, turns heater up to 85).Also, he is hard of hearing, quit wearing his hearing aids, and difficulty comprehending. I realized the other day if this continues another 5 years, I will be 80. I am still very active and would like to travel. I know the only way is to have a caretaker come in to our home, or check on him a couple times a day. It is hard for me to let go. I do get out for a couple of hours a few days a week, but really can’t take him many places. Has anyone else had this conflict?
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Withgodshelp Aug 2023
I thought of you after reading this for an hour or so ! It really touched my heart! I wanted to say something and I am not a usual responder but it just stuck me so hard that You seem to be a really wonderful person! So please hear the care in my heart when I say what I am about to….ok ?
Imagine if you will……being a loving wife, who has a lot of activities in her busy 75 year old calendar, places, people, friends, of course chores, but also new things, interests, people , extended family, hobbies, and the loving responsibilities/connection of going to see your husband in care. You deserve a life, the “twilight” years to be your best you can be, whilst you still have health. it doesn’t mean you love him less, it means you will end your years in a happy frame of mind! And please know that I say this because I understand completely about the love and duty aspects ( I am 63, have a fulfilment demanding job and simultaneously care for-my 93 year old Dad (deaf but refuses hearing aid, taps on, recurring ??s, diapers, AND my younger husband , only 53 but extreme anxiety and trauma issues, and if not made accountable, would “let me “ do everything !
I have a lot of beautiful friends around me, they are unanimous! RE-INVEST IN YOURSELF TO FIND HAPPINESS- we only get 1 life…🥰
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Sounds like my Father - I havnt had a boyfriend in 7 years - had to post pone 2 jobs , sold one house 🏡 my sister who hardly knows him kidnapped him and took him 3000 miles away from his Home 🏡 that cost me $16000 . You have to seriously consider round the clock caregivers or a live in caregiver or say “ Dad if you do not cooperate you have to go to assisted living “ I have taken care of 4 sick people in the last 7 years - 3 died . I feel my age and I look ragged . I would not wish this job on anyone especially if you are alone making all the decisions and doing all the work . Time to tour some assisted living facilities - go alone and check them out . Look on Care.com , Next Door neighborhood app , Nesterly .com or a nursing school for a CNA . Even with Help coming in you still get burnt out . Take care of yourself . Your life and Happiness matter . Read Yelp reviews go to the senior center for advice .
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I take care of my mom alone. Siblings have all passed leaving me to deal with a dementia hallucinations person. I have told her I have a life and am trying my best to live it. I go to work to get away. She use to call me 3 or 4 times asking me when I will be home. I express I am working and she has not been calling as much. Of course, her eye sight is getting worse and can't see phone. I do have a nurse coming in once a week and physical therapy once a week. Looking for someone to come to house, so expensive. She has fallen 3 times in one week. Have to do something soon before I go nuts.
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Kristen2037 Aug 2023
Is it time for a placement at a SNF? See an MD to get her dementia/hallucinations assessed. Sounds like it's getting unsafe for her to be alone.
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Helping my husband care for his mother (now deceased) and father (will be 90) nearly cost me my health and sanity until I said "enough is enough" and refused to enable the "charade of independence" anymore.

Now, my FIL is in assisted living and I don't care that he doesn't like it. When my MIL got sick (neurodegenerative illness), he fell apart and often used her illness to gain pity for himself and get his way. He does not want anyone to know his ugly truths. And I wish that MIL was the one still alive because she was such an amazing human being.

This forum helped me figure out how to get my life back on track. My FIL is safe, well cared for, and has access to activities. He is more than fine. Now, I'm much more focused on being a thoughtful, loving woman who engages in mindful self-care. I now spend my energy and time on people other than my FIL and his vapid side of the family who are energy vampires. Life is for the living.
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Yes, my mother gets on my nerves worse than before her hospital fiasco.
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I worry a lot and I’ve become very resentful of my parents for causing the worry. I am angry that my good years are passing by and I am still dealing with their issues.. Very depressed, angry and resentful. I don’t know how my husband can stand to be around me sometimes.

Caregiving has changed me profoundly. I miss the person I was. I’m not much fun to be around these days.
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ventingisback Aug 2023
“Very depressed, angry and resentful.”

If only there would be an easy fix to this. I think some people only finally feel free of these feelings after the LO dies. Then finally they feel free to live their lives fully.
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I wonder if ANYONE (family caregiver/helper) got healthier and happier from caregiving/helping?
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faithfulbeauty Aug 2023
@ ventingisback.. I don't believe so. I think the only way this happens is if the caregiver is not a family member. In my opinion , family members will always feel some type of obligation and often put the person they are caring for before their own needs which leaves the caregiver feeling empty. I think the only way for a family member to feel healthier/happier is if their loved one encourages them to take care of their wants and needs first. Too often the loved one makes the caregiver feel obligated and makes them feel as if it is wrong to put their needs first. Some elderly loved ones take matters into their own hands when they realize they need extra help so that everything will not be on the caregiver but some do not do this.
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5 years ago my mom began her decline, at 85. In and out of hospitals, SNFs, in home care, caregiving agencies, etc. My other sibling lives out of state, I'm literally a story that hundreds of us have told many times on here.

My anxiety hit the moon. My mom has always been a controlling and demanding person and it magnified beyond anything I'd imagined. I walked on eggshells while she was bedridden, her yelling screaming demanding, guilt FOG, all of it. I sought therapy.

I was able to turn it around by setting boundaries and keeping them. I worked it through with my therapist at first, it was going to be worse before it got better and oh man was it. Then once mom knew I couldn't be yelled, demanded, guilted, etc., she became a much different person too. She doesn't like to hear, "Not today," when she asks if I can come clean out the toaster for her - yes that happened once, but she wound up doing it. She doesn't like to hear, "No," when she asks if I'll rearrange her kitchen cabinets - they're fine as is. The minute I rearrange and change everything she'll forget where it is, so it's about the control and "What can Grip do for me today?"

I became much stronger. I don't like the circumstances that brought it on, but I did. She has always been the one who guilted and demanded and threw tantrums when I was younger. Now my response is little more than, "Aah try something new." She's also a lot more civil, and in many ways friendlier. She has a caregiving team at home that comes in every other day and they don't let her get away with anything either, but of course they don't have the emotional component. She's finally realized that when she practices gratitude for things I/we do, it actually works better.

Hard to go through to get there, but I'm there. I wish us all strength, and luck.
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ventingisback Aug 2023
“it's about the control and "What can Grip do for me today?"”

I totally get what you’re saying.
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FB,

I would say that the majority of people struggle, each in their own way, while being a caregiver.

Don’t hesitate to speak with a therapist about your emotions. I am glad that I reached out to this forum, an in person support group for caregivers and my therapist.

Invest enough time in therapy to really make a difference. We are able to learn about ourselves and others in therapy. Start setting goals for yourself and make a commitment to follow through.

Wishing you peace during these challenging times.
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ventingisback Aug 2023
“FB”

At first I thought you’re addressing facebook. And I thought, how weird you’re talking to facebook.

:)

Hope you’re well Need, and Way, and everyone on the forum. We’ve all had/have a tough time.

Let’s not let it destroy us. For those who need to (like me), we can still turn our lives around. It’s never too late.
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Apart from all the benefits for my mom from me having helped, I see no benefits for me. It’s only been detrimental to me. I have no regrets; I’d do it again. It was the right thing to do. But it was only detrimental for me.

It all depends how long it was, how much help, how you were treated, how stressful…

Some elderly people want to take you to the grave with them:
It’s not only that misery loves company:
Misery likes to see other people (especially their daughter) even more miserable than they are. 
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This is an interesting topic. I did change as a result of caregiving. What I found is that it accentuated by strange personality traits. I am a planner and try to anticipate issues before they happen. That is my natural personality.

Caregiving made that trait impossible and incredibly stressful. I felt like I had a fly swat trying to kill every fly on the planet. I could never get ahead of it. So, caregiving probably did change my personality but it also certainly made my natural tendencies more pronounced. I was an absolute wreck.

My caregiving has ended. I am still swatting flies but they are manageable.
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One thing I had no idea what had happened to me was my mind changed as a direct result of realizing that my father was now in the new stage of life where he needed care 24/7.

What I learned is that one's parents do not just influence most children's lives: the parents influence is actually a profound effect that permeates and pervades every part of your being!

Even though my father is well cared for for in assisted living, and I'm so thankful for that, I have changed in many respects. I am in a new stage of life, too. It's been very difficult but everyday I'm trying to make it all go in a positive direction. This forum has helped.
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Withgodshelp Aug 2023
What a lovely positive and uplifting comment ! Thank you !
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Caregiving has made me even more negative about the future than ever before. At 67 and caring for a 95 year old who is still somewhat mobile, I can only see a bleak future for myself. So most days when I'm not at work or caregiving, I contemplate what will happen when my patient dies and I get to face an alone future with not a soul to look after my concerns (other than a lawyer). BTW, did anyone hear yesterday that Social Security will be running short sooner than later. Yay! So glad I've been contributing since I was a teenager.
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I have not had to care for my Mom physically since Aug 2016 when I placed her in an AL after 20 months living with me. She passed Sept 2017 at the age of 89.

I found I shut down emotionally. I was the only one out of 3 children, the other 2 boys, that could care for Mom. I was the oldest, a girl and the one living in the same town. I had to shut down, I think, to get the job done. I find I sort of do this when I have something I have to do I don't want to do. If I don't, I cry out of frustration. I sort of put a wall up.

Your Dad...I had a good relationship with my Dad but he was not an easy man to live with. He was a lovable Curmudgeon. You either liked my Dad or u didn't. Mom waited on him hand and foot. He I would not have cared for, especially in my home. He would have gone into an AL or LTC. He would have loved it. He was a storyteller and he would have had a whole new audience.
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faithfulbeauty Aug 2023
@ JoAnn.. I do feel myself shutting down emotionally. I'm trying really hard to prevent that. Prayers to you.
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Yes it has changed me. I have lost my family since I am not only medical POA but financial POA and my siblings resent it because the money is not easy available to them like it was in the past. I am also Trustee of mommas estate. I have had to put certain restrictions on handling mommas finances because siblings were taking advantage of her and stealing from her. They don't like it. Neither does momma because she enables and has a codenpency relationship with them. They treat me horrible. I guess it is a way to get back at me. You either give them money and become part of the family or you are excluded. I have had to back away from them and momma to protect myself. She does not see it and believes that I am in the wrong and should be the one to make up. I have noticed that I do not put up with crap as much as I use too and I am more vocal about it. I guess because I have been hurt so much. I live out of state and have been caring for momma for over 12 years. I belong to a couple of groups over here and have hobbys to keep me busy. Also go to the gym three times a week. Try to take care of myself. Don't know how this is going to sound but I love my momma and trying to take care of her the best I know how too but I will be happy when it is over. I dread the funeral and afterwards though because I know my siblings will be at there worst with their hands out for money. They will probably sue me. It want do any good because I have done nothing wrong but that is not going to stop them from trying. I just want to grieve and go on. I know that if anybody has read my posts you are probably tired of reading about me whining but I am tired too.
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Withgodshelp Aug 2023
Bless you truly !
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OP, I hope you can take a total break. Same for me. It’s not fair that you (me too) basically have a “child” suddenly to take care of, but you never asked to have a “child”.

You (me too) need to focus on your job, your life. You have a right to live. You (me too) need to get your life going, and find your passion again. So many people go through life without PASSION.
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faithfulbeauty Aug 2023
Great advice! I was once a passionate person and I'm definitely trying to find that part of me again.
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Your advice is excellent. Let’s both try to put it into practice, OK?

I’m an only child, too.

“I recently thought about the fact that he has to do nothing while I'm doing his tasks and half doing my tasks.”

EXCELLENT POINT.

“there was almost an accident”

I get it. Be careful. Something similar happened to me. Not driving. But washing dishes. I dropped a plate (I was deep in thought). It shattered into a million pieces.

Recently, I took a break from helping my mom. “Miraculously”, my writer’s block disappeared (I was writing a simple, easy report and had writer’s block), Turns out it was completely connected to the stress of helping my mom.

“I'm no longer excited about things that I love.”

Don’t let this happen. I won’t let it happen to me either. Let’s get our personalities back.
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akababy7 Aug 2023
Right after we lost my dad and I was the executor of his estate while working full time in another state. I did not have any interest in my hobbys. I was overwhelmed with responsibilities. I had to get mom and dads wills redone. Took two and a half years. They were a mess and I had the responsibility of taking care of momma. Over the years I hired people to help me, put up boundaries with momma and siblings, sold some of her property and she went into assisted living 2018. Brother is local and the goldenchild so I let him take care of things over there unless something major happens. Had too. My blood pressure was sky high, I was tired and miserable.
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Good post, I understand. Me, I have become impatient, waiting for this to be all over with.

Being a caregiver for me is no fun, it is drudgery, I do what I have to do for two people in homes, one in AL the other in MC. 4 years, heading into the 5th.

Maybe you are too involved with your fathers care, being in AL the basic day to day needs should be handled by the facilities staff.

Sending support your way!
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ventingisback Aug 2023
“I do what I have to do for two people in homes, one in AL the other in MC. 4 years, heading into the 5th.”

God…

(((Hug)))

That’s tough. I help my mom: but so many problems.
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When are you going to put these things into practice Faithful Beauty? Almost having an accident because you were thinking about something terrible your dad said to you should be your wake up call.

"He has me to do everything for him and I have no one to help me. I'm not saying I need help..." YES you do need help to stop this insanity of putting dad first and yourself last. And your dad needs to be in a facility where he can have ALL his needs met by trained staff and you can get your life back.
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faithfulbeauty Aug 2023
@sp196902
I'm putting things into practice now because almost having a wreck scared me. You are right.. I do need help.
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FB, I'm so sorry to read this post.

Do you have a therapist?

If you do or not, please find a meditation app online and start meditating for 5-10 minutes each day. It will help you "let go" and regain some focus.

As for dad, not knowing if he has dementia and not knowing his actual capacity to do for himself, it's hard to know what to tell you. Have you read "Boundaries" by Townsend and Cloud?

You are demonstrably doing too much if you cannot drive or work with full concentration.

Have you gotten him a "needs assessment " through the Area Agency on Aging?

Let them tell you both what his needs are. Then help him to hire that help.
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faithfulbeauty Aug 2023
@ BarbBrooklyn.. I do not have a therapist yet but I will have one soon. I do not think he has dementia but he has the typical forgetfulness that comes with aging. He is still able to bathe himself, feed himself and dress himself. But because he has a harder time getting around, I do the cleaning, washing getting groceries, and taking to doctors appointments. I have not read "Boundaries" but I will definitely see if I can find it. I will also look into the Needs Assessment. I'm really exhausted and just realized the magnitude of of my exhaustion.Thank you !
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