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I guess I'll go first with this one.
The thing that stands out the most for me about MIL with alzheimers.......

Everything is ALL ABOUT HER. I could cut my arm off and be bleeding on the floor right beside her and she would worry about who was going to bring her a cookie.
I am treated as" a nothing" in her world.
Then I feel guilty for thinking she's an old battleaxe.
Well that's my confession.
How about yours?

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Honestly, what made caregiving hard and bothered me the most is less the disease more so how hard our system in US made it to take care of someone.

Like I told my therapist all my issues with caring for my mom would have gone away if I had the money.

I could wrap my brain around my mother getting sick, I had a hard time accepting that because she had no money everything was a battle. The disconnect between what was covered and what doctors felt was best bothered me the most.
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MargaretMcKen Nov 21, 2024
You have my sympathy about "“because she had no money everything was a battle”. But isn’t everything – from getting an education, to a place to live, even a job in some places?
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Conversations like this:

DH: I think I’ll make a cup of coffee. (He can’t; he doesn’t know how.)

Me: Ok, but can you wait until I finish wrapping this last present on the counter so you don’t get them wet?

DH: I guess I’ll have to….you're so helpless.
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The inconsistencies. The incongruencies. The days that start well but end with DH not knowing which hole in the pull-up he’s supposed to put his foot through.
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Getting her up in the morning. Her depends often leak. I’ve tried different brands and put the booster. I just want to enjoy my coffee when I’m not working but have to deal with that everyday.
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I am not a hands on caregiver but just tired of the endlessness of my father's lingering. My father is in a nursing home 3,000 away from me. He spends all his days sleeping and doesn't really speak anymore. He still recognizes me. I don't want him to feel abandoned and I want to make sure he is cared for properly but I am tired of living out of a suitcase. I am looking forward to the day I never have o see this nursing home again and I can move ahead with my life. I really can't stand living like this anymore.
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Unnecessary complaints. Simple questions resulting in hostility. Resistance about simple things. I don't understand why some elderly people think this is necessary or even OK. I don't understand the mentality. If someone came to my house and offered to do the dishes i'd be over the moon. I really wouldn't care - I wouldn't start getting crabby about it. I'd be grateful not angry. Honestly - the mentality of some elderly people really is beyond my comprehension. It's just ridiculous !
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MargaretMcKen Nov 19, 2024
My guess is that 'being helped' rubs in one's own shortcomings?
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There are so many more than one. Right now it is the constant smell of stale urine because he is incontinent and won't change his clothing. He says he's fine. I'm actually hoping for a "code brown" so he will be forced to change. Urine to him is just water and doesn't smell. I am gagging just being in the same room as him. He keeps asking what's wrong.
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The many Honeymoon trips we have taken. Not the kind you might think!

First is the Emergency Room Honeymoon. Husband is stoic to a fault; by the time he consents to go, he tries to convince everyone there he's fine! Slows down diagnosis & treatment, of which he's convinced will be terminal.

Then comes Hospital Honeymoon. After discharge in bed-bound condition, his relief at being home rests on his lingering need for constant bustling attention, no-delay requests, and resumption of things the medical team forbid he ever have or do again.

Home Health Care Honeymoon is the most protracted. Too many visits, too few, playing PT bed-exercise assignment hookey, and the struggle for him to plug his own elusive initiative back in. For all the real life-saving help he's gotten, though, and his own gradual weaning from helplessness and fatigue, I'm eternally grateful.

I just fantasize at times what it would be like to have those medical Honeymoons include automatic inclusion and coverage of solo at-home caregivers, too. Ha ha!

But, it's all worth it when we start the slow dance back toward whatever level of restoration may be possible each time. My celebration today: husband made the oxygen-assisted walker-journey from bed to the bathroom for the first time in 4+ months after having rare (incurably mutating) double pneumonia and severe anemia! His health is stable & improving for now and meds are helping keeping the bugs at bay. So, for me, Post Honeymoon bliss is the Best!! 🎉
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Not making enough time for myself because us empaths worry sometimes too much even more than ourselves .
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Just how Caught Up in it all I can get . I often think I'm so strong, healthy, imaginative, & creative myself, that I am rising above it all & unphased by most of it. Then I feel like that frog in the story who ends up floating to the top of the pan , having really deceived myself.
Why are WE the Ones who end up being the sole Caregiver? Because-think back to a time -say-when you first met your now disabled spouse. You may not have known his past History -but his Family-So encouraging of the "relationship" with you , did , and saw a lot of "potential" in YOU -what a "good wife" you could make . Values such as Loyalty and Kindness could serve them well.
Another factor that points to You as Caregiver, particularly over the care of a parent, is your position among your siblings in a Family. Eldest, Middle Child, Youngest, whichever was held most responsible for Family Unity, even back to childhood , Bingo-their IT. Or, as you grow much older, the Care can fall ,without question, on the Younger ones. It often falls, too, on the healthiest ones , which is supposed to serve as your big reward for living well. "No good deed goes unpunished" .
Finally -I just accept it and realize I still wouldn't trade places with anyone. This is My journey.
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clcotton9000 1 hour ago
I so agree and guess what? I am an only child who took care of my mother and father who have been deceased for a very long time.
I miss them and I am so grateful that I was able to take care of them the best that I could and I would do it all over again.

RIP Momma and Daddy

PS: I am now a caregiver for a wonderful, smart woman who reminds me so much of my mother. Also, I was a caregiver for a sensitive, caring man who passed away last year.
It is a blessing to have known him and his beautiful family and a blessing to work as a caregiver...I guess it's all about one's mindset.
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I’m 60 years old and Recently I was SO Overwhelmed by my 3 sisters. The oldest 65 has behavior issues and was in jail for about 2 months. I was trying to visit her and find out any information about her condition and incarceration. THANK GOD she is out. The youngest one 55 years has had a fall and broke her leg 4 or 5 months ago. . She is now finally going through physical therapy after 4 or 5 months. I would take her to doctors appointments. While all this was going on I was taking care of my 59 year old sister as her paid provider because she too has mental issues. All the while I was feeling mentally exhausted and guilty at the same time. I have a caring heart but kept thinking WHYY Me? Sometimes us caregivers we don’t get that same care Or ask for help.
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I am 65 and my husband is 66, We are taking care of my mother-in-law. My husband has other brother and sisters. But it has fallen on us to take of his mother. For the past five years we have had her, now at 96 her need more and more help. And the others are too busy with their own lives, they can't tell us when they can fine the time to come stay a week or a month so we can plan time for each other or time to just breathe.
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Southernwaver Oct 21, 2024
Indeed this is what happens.
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Mine is that I struggle with my connection with my FIL but spend the most time with him. Plus my husband has been traveling a lot and he also has nights out with the guys.
my FIL is very self centered and very seldom is grateful for anything. My husband and I get 1 week a year away together.
i feel so guilty but I never planned to be a full time care giver of a 92 yr old at 72.
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Peasuep Oct 15, 2024
That ‘entitled’ thing is so awful, isn’t it? It’s got to be even worse when you’re doing all this for someone who really shouldn’t be your responsibility at all. I wish you stamina if you continue and courage if you decide you need to make a change.
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Yeah my mother was abusive to my father also. They were in the nursing home together in separate rooms but sat at the same table in the common area. She was constantly berating my father there.

Im sure my father misses her but life is so much more peaceful for him now that she’s gone.
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I care for both my elderly parents my mother is so angry with my dad all the time, no matter what he does. I've compassionately talked with her, more times than I can count, she apologies every time, is nice for 2 days then she's back at being mean again. Yes caring for them is difficult on my emotions and physically, but her anger makes it almost impossible.
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I care for my husband who has Parkinson's and has been bed bound for the last 20 months. I love him dearly and will do whatever I can for him. What bothers me the most is the loneliness. He is not a "talker". We have no children and none of our relatives are local. My work "friends" have gone on with their lives since I retired to care for him 4 years ago. I get together for lunch once a month with a few girlfriends. They are busy caregiving too. It's difficult to go places by myself and try to make new friends.
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Anxietynacy Oct 5, 2024
Jan, caregiver loneliness is hard. You got many friends here, to chat with anytime!
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That my relationship with my parents has slowly changed from one of having conversations and catching up to one of which problem or problems am I going to be solving today... And the neverending negativity..

The conversations are still there to a degree but they are way overshadowed by a never ending set of problems to be solved....

I leave their place every day feeling depleted and defeated. My dad's words to me today as I left were about arranging for a "babysitter" for mom while I take him for a test he needs done (he says this in front of mom who has severe anxiety when left alone for long stretches but is fully functional cognitively) and upon hearing of a concert I'm going to "are you wearing a mask? Don't get covid".

Everyday he talks about "when your mother gets better" or focuses on everything she can't do. Lately he's harping on the fact that they can't drive 45 minutes to babysit their one year old great granddaughter, again, in front of her. He calls her walker a "stroller" he just doesn't THINK. The negativity is destroying my soul.

My brothers get to come visit once a week and have a nice time mostly. They both work full time plus, it's not get their fault, and they never criticize me. I'm just jealous I guess they get to have actual visits. I need to get back to counseling to reframe it all. It's hard...
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Whymealways Nov 22, 2024
I completely understand. I feel the same way. Why is it you that has to reframe and why can't they take time out once in a while to give you a break? I have learned that in the end it is what you can live with and knowing how you will feel in the end if you let matters take care of themselves. The feeling that you can't step away is overwhelming. Then of course are the helpful souls who tell you to just put them in a home and be done with it when you know the care they will receive is poor and you can't afford it anyways. Yes...I understand how overwhelming it all us and the anger you feel that others can lead their lives and visit while yours is completely taken over by this. Sending a big hug.
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I agree with Vegas Guy

It is the constant blame by all of those family members who do not help.

Never a kind word from one of the non helping family members.
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Seeing my Lynnette, the love of my life slowly disappear before my eyes. I go to bed and cry nearly every night. I wake several times a night to check on her. I have a camera so I can watch her while she sleeps. She is under hospice care and the roller coaster ride rips me apart. She returns to me but is never as good as before. Thank you for allowing me my whine moment.
I sincerely feel for those that are "forced" into caring for parents, siblings whomever. God bless you caregivers. You truly are angels on earth. I wish you peace, comfort and knowledge everyone on the forum is with you in spirit.
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JanPeck123 Oct 5, 2024
I pray for you and your wife. You are a wonderful husband.
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What bothers me the most seems to change. Today, it’s conversations like this:

DH (frantically): what time is it? Why didn’t you get me up?
Me: I tried, at 8:00
8:00! Why so late?
I also tried at 7:00
You did not! What time is it now?
It’s 10:00
10:00?!? It can’t be! I never sleep until 10:00!
Honey, you often sleep until 10:00, especially when you’re up and dressed at 3:00 and I have to spend an hour trying to get you back to bed.
I don’t do that!
OK. You don’t do that.
Well, you’d better get me up earlier tomorrow.
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GrandmaMaria Oct 23, 2024
God Bless you and prayers for you.
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My Mom does not have dementia and I'm truly thankful for that. However she is unable to walk now because of a medical condition and is therefore in a wheelchair. She needs assistance to stand and requires help with hygiene and toileting. Its amazing how much we take for granted everyday without realizing it as to having the ability to walk, stand and clean yourself. I love my Mom dearly and I do have a sister that shares taking care of Mom. But to answer the question, I hate the loss of my freedom in my retirement years. And I'm tired and sometimes get frustrated with the day to day stuff. My husband and I had plans for travel, spending quality time together, having fun. Caretaking makes it a little harder to get 'our' time, but we keep at it.
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b8ted2sink Oct 24, 2024
After decades of long, hard work my spouse had done & my own work & over raising a family , I couldn't; wait for retirement! It finally came-but only because my husband could no longer work -due to a disease he came down with by age 50. Now I am caring for he & myself, house, home, & pets , etc.. most falls on me.
So -we didn't; travel much for awhile , until we more recently figured out how to Mobilize , despite his poor condition and inability to walk . With some help from a family member we got a hold of a wheelchair & set out on some adventures this past Summer-some quite far away. He did okay & the trips served as a good distraction for him. Now we are back home with no plans to go Out again or hit the road. We are thankful for our Home , what activities we Can do together -both inside and out . We spend time working on Hobbies at home of our own separate interest , doing some gardening, or going for walks nearby. We 've developed our own "schedule" -doing things in our Own time. We still have the "freedom" to go do things either just the 2 of us, or with family or friends. There are still a few favorite old activities of my husbands he can NOT do anymore , but we appreciate what we Can do .
Mainly, our Retirement didn't really go "by the book" but has instead taken many interesting twists and turns as we had to plan , at least our adventures, around a lot of Extra planning in order to make it Happen. Once we were able to check off what had become our "bucket list" we held a much deeper appreciation over times, that in the past, we had just taken for granted. I don't ever recall having so much Fun over past family vacations as we have had just in these past few years, despite the setbacks.
I hope you can find even little ways to enjoy the Moments with both your mom and your husband & achieve your dreams that may have to be rekindled , or , need be, completely morph into something, perhaps what you'd never imagined.
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Being DUMPED on by non-caregiver family and loved ones. "Why don't you just give her the med I told you to"......."Why did'nt you keep the dog out of the room"............."Why don't you feed her this, every hour"............. The constant ? I am to blame by all the non-help.
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RoosterIam Oct 3, 2024
Please try to ignore those that are callous enough to nitpick when they only offer on lip service, Pardon me but the middle finger seems apropos,
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To be honest, I am not sure where my head is somedays. My husband was diagnosed a few years ago. Over the past several years he has slipped a little at a time. Back in February he suffered a seizure and after I noticed a lot of change. My husband hasn't been able to work for over a year ( he was self employed) and I have stepped up to work has many jobs to pay the bills. For SSC doesn't pay enough to pay the bills. Just recently At one of his doctors appointments, The doctors advised that I need to get done work and stay home and take care of him. (I have been able to leave him with a list of todo's but noticed that things aren't getting done or not the way they should be) So when I get home from work I check the list and have to go over it or redo things. Our granddaughter moved in to help. She is home most of the day, there is only a few minutes between us that he is alone. Most days are good but there are those days that I just want to scream. I am now trying to find a way that I can stay home and take care of him. If there is anyone out there that has a list of places that I can contact that I can sign up to be his paid care giver PLEASE let me know.
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That I can't take my husband back to our normal life. So, I pour my energy into making each day seem like the best for him. Adapting constantly as needed and trying to see the world as he experiences it. My reward is a smile spreading across his face.
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That you have no life and that your aging almost even faster than who you are caring for. I have no time to ever catch up on sleep and wonder when will I have my life back and just as you said, start to feel horrible at the first sight of my wonderful father who did not choose to be so helpless.
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Im used to that. I'm a preschool teacher and I am helping take care of my MIL. What bothers me is the family drama. We have a family reunion Saturday with my MIL side of the family. We have tried to get them to visit all month long. They haven't. They expect to help tomorrow and I don't want their help.
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Bladee Oct 1, 2024
I have a relative who shows up to “visit” with family and they are always dressed up clearly on on their way somewhere else….always show up empty handed and expect to be waited on while having no concept of the work that goes into caretaking.

I have finally started saying when are bad times to visit like first thing in the morning when you have had a sleepless night caring for someone who thinks it’s breakfast time at 3 am.
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Atlas,
Your comment is down the thread a little so I hope you’re still reading. I am on the same page as you even though my husband is not to the stage your husband is.
I feel like you are on the right track looking at MC, and the sooner, the better. But please, make sure your financial house is in order first. When one is dealing with a spouse, not a parent, and considering long term care, all of your combined marital assets are in play and if you haven’t already sought professional advice from an elder law attorney, please do it now, before placement, to protect yourself to the extent that you can.

I’ve been slow on this because my husband’s behaviors are tolerable so I apologize for being all ‘do as I say, not as I do’ here, but things can change so quickly with dementia and finding the right placement situation can take longer than you think.

See if you can get some help from a home care service right now before you self-destruct. Even a couple of hours a week will give you time to see an attorney and find a MC facility. Ask questions on the forum if you need guidance; there are wonderful, experienced people here to help you.
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Dealing with the medical world on any level. Too much to say here in one post. Suffice it to say, the whole medical world needs a major reset. Humanity, compassion, empathy and bedside manners need a comeback.
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Anxietynacy Sep 27, 2024
Oh that's a good one, that I have not seen on this thread.
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I know what you mean. You just described my situation with my 94 yr old mother. Except I have 4 sisters. I guess I was lucky I was born a twin. She is my only respite M-F 10AM - 2PM.
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To be honest, the lack of being able to properly connect or pursue any possible romantic interests, I have to be close by and can't leave for longer than 1 night. As a 27 year old man, I have needs and wants just like anyone else. It is hard to be touch starved, it's like I've taken an involuntary vow of abstinence. I'm hoping I can work on this to make something work.
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Anxietynacy Sep 9, 2024
Bigjoe, so sorry your going through this. My youngest is 26 it would break my heart if he gave up his life for me, the way you have for your dad.
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