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Dad sometimes goes to sleep very late. I help him go to bed. I'm very tired by the time he goes to sleep.
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Reply to Lvnsm1826
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Finding the compassion that is needed everyday. Not just for my husband but also for me. I am so exhausted both mentally and physically.

In my heart, I know he doesn't understand what he is doing and has no way to make changes. But when he repeats same actions = hiding dirty depends, not making to or forgetting to go to bathroom so I have to give him, rug, bed, floors, toilet, tub clothes a bath each day.
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BurntCaregiver Nov 2020
I hope you have gotten some outside help.
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Covid-19 erased all my efforts and progress with helping my Mom. I finally got a job and had a pretty decent system of caregiving in place for her but Covid-19 is chipping away what little control I have left. I’m exhausted mentally, physically and emotionally. I can’t get anything cheap anymore due to things being out of stock. I can’t practice social distancing because I can’t do curbside pickup anymore. I have to run in and out of multiple stores just to find Kleenex and aspirin. I barely have any downtime because I have to figure out what to make her or get take out. I had a cashier get mad at me because their credit card reader failed to read my cards and then when she kept swiping them they triggered fraud activity alerts. It was the only place that had the Kleenex that my mom wanted, so I ended up using an ATM resulting in unnecessary transaction fees. I cooked, ran around to different stores and when I get to my Moms, she’s falling back on old habits, not staying hydrated and taking medications as prescribed. I gently reminded her that now is not the time to end up hospitalized, even though I’m not sure if I’m passing on anything to her by going shopping for her food and necessities. Anyway, it was a rotten day again and I’m hoping to get some rest tomorrow. I pray that she’ll be okay, but this Covid-19 is going to be an uphill battle for all of us caregivers and our LOs. God Bless You All.
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KarlaDay Mar 2020
Thank you so much for what you do. I pray that God give you the strength and protection and rest that you need during this time. God bless you!
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After doing this for awhile, I think my two biggest things are that people just don't get it. They just don't understand what it is really liked to have a parent w/dementia and the person with dementia doesn't get it either! You just feel very alone!!
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bookluvr Mar 2020
What really irritated me at the time, was when they found out I was caregiving my parent(s), they say so blithely, "It's like taking care of children."

I must have had a very bad time when a client said this to me. I got angry but respectfully asked him if he ever took care of an elderly? He said no. I then said that taking care of elderlies is NOT like taking care of children. Kids cry, learn to walk, learn to feed themselves, want to do things for themselves... As for an old person, you cannot change the bedridden parent's pamper like a child. They forget to walk, they forget to eat, until they're completely bedridden, oxygen, stomache tube... They don't get better, they get worse."

He stared at me with wide eyes. When I was done talking, he quietly said, "No, taking care of an elderly is Not like taking care of a child." He told me that his uncle took care of the grandparents. He just realized what his uncle went through while doing that. His eyes got watery....
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The only solution is PRAYER. I promise you this is a hard journey . Complain out loud, laugh with the person you are taking care of, walk away-don't engage in their complaints, etc. Love them, and pray for them.
I took care of my mom with alzeimers so Know where your coming from.
Be calm and pray hard..walk outside when you get frustrated, even for 5 minutes. God bless.
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People that dont appreciate it and or makes things harder.
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Right now what bothers me most is not being able to even go for a walk around the block because I can't leave mom alone. Have to have literally everything delivered. It gets frustrating.
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Momsonlychild Nov 2020
I totally get this. Nobody seems to care either.
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Many things but if I have to pick one it is being totally alone. No help with any aspect of mom' dementia. If a family member or friend would say hey how about a cup of coffee. It would mean so much....I'm sad all the time. Watching mom go through this .
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Reply to Cindyn12345
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What bothers me is that my mother doesn’t appreciate me. She’s all there mentally, but physically she needs help with everything. And I do a lot for her, but she never thinks it’s enough. I feel more like she treats me like a slave, she barks out orders almost everytime she sees me in sight, I even forget what I came in the room for sometimes. It annoys me to no end sometimes. I know she cares about me but she rarely shows it. It’s all about her. She never shows any empathy for anything going on with me physically or emotionally. But when siblings come for a visit
she’s a different person, loving, catering to them with her walker and all, would never ask them for any help whatsoever. They get all the good parts and I get the crappy ones. That’s my vent.
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StuckinOr Jul 2020
Dear Phoenix,
I feel for you. I am going through the same thing. My mom (84 yrs old) doesn't do a thing around the house anymore since I moved in over 2 yrs ago. I've lost so much, have had to sell a lot of my things to pay my few bills I have. I'm killing myself for doing these odd and ends job to make a few bucks to pay for my bills. What more do i have to do before I die before she does. My health has gone down hill.
I don't even want to come back anymore. In this whole time I feel like her home could be mine also for about 3-4 months after my brother passed away in Jan. Now again it's her home and I can't do anything here.
She tells me that we need each other. I've told her that I don't need her to survive. I've had a hard life and I know how to fend for myself even if I have to live out of my car.
A good friend of mine finally said the other day that I should come live with him. I want to so bad but then the guilt comes in. I'm to the point and give her my 30 day notice so she can think of what her next steps are. She can't keep asking her neighbors to help. They are older and have their own health problems.
My mind is in a million different places right now that I'm almost ready to blow.
I hope we both can do what's best for us!
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Cindy, I thought the same way when I was taking care of my mother alone for eight years. It would have been nice for other family members to offer help in a small way. I would get upset sometimes, but it does not bother me any longer. I would be the first one offering to help and appreciate all the caregiving, if it was them doing the caring. You can't teach old dogs new tricks, they will bite you where the sun doesn't shine.
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My Father's anxiety is exhausting.
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BurntCaregiver Nov 2020
I know what you mean. You can only take the panic attacks and anxiety for so long.
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My granny being ungrateful. Feeling like I have to do what I do for her. I don't have to do anything for you I do it because I care about you even though I didn't get the same treatment from you. Acting entitled doesn't help your case.
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Reply to Atmywitsend40
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I would say isolation and loneliness. It is worse now with Covid 19. Both my mother and I are in high risk categories so I have stopped taking her out as most restaurants only offer curbside pick up or outside dining 6 feet a part. I have found myself eating more since we are stuck inside 24/7. And gaining weight has become a big issue for me as i have always been thin. I think I've hit all the big ones except for boredom. I think coronavirus is here to stay for a long time. Sometimes my depression becomes way too much to deal with and after waiting on mother i surrender to my bedroom and read, paint and watch netflix. I also pray a lot.
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Reply to EssieMarie
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I feel the same way. The other day I was choking on coffee - went down the wrong pipe - and coughing and gasping - and my husband sat in the living room eating his cereal like nothing was happening and didn’t even ask how I was. I’m thinking of getting a first alert or other device in case something happens to me I don’t think he’d know what to do. So darn frustrating - but that’s the Illness.
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Reply to RainboCaregiver
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Today this is what bothers me most caregiving.
A mother who did not take care of herself when she was diagnosed with diabetes.
She is incontinent and has MCI. A father who will not get treatment for his anxiety
and depression. It is a crazy merry go round and has been made worse by Covid.
I know I have posted about this before-sorry. I going to take a week off from them.
Very tired myself.
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The constant negativity. He watches tv news all day and talks about how everything in the world has just gone to hell. Never once says the meal we fix was good. Our grandchildren are too noisy and too active. All he does is sit i the same chair all day and watches Fox News.
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BurntCaregiver Nov 2020
OMG! I forgot about that. I have the same situation. There has to be a cable news channel blasting every waking moment. Only here it's not Fox News. It's MSNBC or CNN. Day and night. Then of course it's the end of the world and there's no hope for anyone or anything. That lamenting is usually not enough. Then it will be pick a fight over politics. It has worn me down to nothing and I've reached the point where I just don't care about life anymore. This site has helped me so much. People who are not living the burden of caregiving just don't get where you're coming from. The people here so and they help.
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Watching the patients memory go, their mobility slowly or rapidly decline, and there is nothing I can do to help them
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deardarla Nov 2020
But you are helping them just by being there.
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The pain and loss of dignity for the one I am caring for.
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I am new here and so glad I found this website. It is a comfort reading all the questions and answers - makes me feel somehow connected.

It is hard to pinpoint what is the worst..it seems to change daily. I think overall is the feeling of isolation and that the world is passing by and nobody knows how hard my life has become. This has resulted in total resentment and anger towards my sibling whose life seems to be going on normally while mine feels like it has turned upside down.
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NeedHelpWithMom Sep 2020
Welcome!
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I am new and grateful to have found this site. I am a 59 yr old retired RN who recently (2 months ago) took my 95 yr old grandmother out of a nursing home (where she was totally isolated due to the Covid shutdown and also not getting good care) and brought her into our home to care for her. Even as a nurse, I can tell you that this is the hardest work I have ever done. My grandmother broke her leg (requiring surgery) 5 months ago and while it is miracle that she can walk at all, her mobility is the equivalent of a 1 yr old. She can walk with a walker, but just barely. She needs someone right with her holding onto her gait belt. She also cannot get up or down out of the bed or a chair without assistance and use of a gait belt. I currently have to plan everything in my life in 2 hr intervals, as that is the length of time she can hold her bladder without needing assistance to the bathroom and all that is associated with that (getting up/down from the toilet, wiping, pulling her pants down and then up again). I am totally exhausted and angry at the fact that her 3 grown children (including my mother) all had various reasons/excuses for being unable to take her in to care for her and because it was they who were all telling me that my "Nanny" was "going downhill fast". There is no doubt that Nanny was depressed due to the circumstances she was in (in substandard nursing home), but she is fully cognitive and now that she is living in my home she has not only perked up to the point that I fear she could easily live to be 100, but she has become quite needy in what I call her "pillow fluffing" needs. Looking back, I realize my decision to do this was more of an emotional decision than a rational one. I truly did not fully considered how this was going to alter my (and my husband's) lives for what could easily be several years. I own what I've done and I am dealing with it.....and I know it was the right think for my grandmother, but I feel like I went to work in early Sept and 2 months later my shift has not ended. On the up side, I am grateful to have found a place where I can release/share some of my frustrations. Thank you all for listening.
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NeedHelpWithMom Nov 2020
Welcome!
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What's bothering me lately reading the many posts on here is that many people don't prepare or plan for their old age, and when they get to that point, they just become a HUGE burden on their aging children for years and even decades. Many of these people are not even appreciative of the sacrifice their children make. Instead, they demand, demean, manipulate, destroy their children's health, finances, and marriages. Granted a lot of them lost their minds to dementia. But that makes no difference to the damages they cause.

What we all can do is to prepare for our own "golden years" so we don't rob our children of their lives.
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NeedHelpWithMom Nov 2020
Yes, it’s depressing and frustrating to know how much of a struggle that families go through. It’s very sad.
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What bothers me the most about caregiving besides the total disrespect that comes with it, is the resentment it has caused in me. I am the caregiver to my elderly mother who does not have dementia but has some physical and mental problems. Mostly just old age. I have to do everything for her. Meals, laundry, cleaning, yard work, shopping, phone calls, appointments, etc... basically I'm a slave. I can't even call myself a servant because servants get paid a wage. I do not. Every moment is all about her no matter what. She has the greatest empathy and compassion for everyone and they think she's wonderful. She does not have the slightest empathy or compassion for me and never did. She pulls herself together beautifully when there's company or when my siblings (who help with absolutely nothing) come by to visit. She doesn't dump her gloom, doom, and misery on them ever. Her panic attacks and anxiety never come on when there's people around. That's only for me. She only complains incessantly about her health to me. I don't want to forget there has to be a cable news station blaring every waking moment as well and unless I start using earplugs, there's nowhere I can go to get away from it. She picks several fights a day. Of course I have to be able to predict what kind of fight she's in the mood for. She enjoys getting me upset. I think the part about caregiving that bothers me the most is the resentment that it has caused me.
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NoLife Dec 2020
Believe me I understand. And what is it with cable news? My mother has dementia and doesn't understand a lot of unless they play over and over all day--then she still gets it wrong. I am disrespected and thoroughly unappreciated by my mother. I do everything you listed by she says I don't do much. She loves to pick fights so much that she will continue to fight with me when I agree with her.

I'm new to the forum and was very moved by the response I got when I posted my question. There are some really caring people on this forum. I'm just trying to take it one day at a time and practice being a "gray rock", because my mother is and has always been narcissistic.
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Not being able to travel or just be away from the house for very long.
But Marialake, I hear you honey, and it sounds like you are dealing with a Narcissist Elderly Person. That's a double whammy .
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MaryBee Nov 2020
This is true for me, too, d.d.; I feel stuck at the house and it makes me feel resentful.
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Burnt, get her some lightweight wireless headphones. She'll hear better and you will have sweet, sweet peace.

Oo! Just googled prices for the type of cushioned ones I was thinking of, and now discover that mobility websites have already thought of this - so there are ranges designed for older and disabled people. Seem to start at about $30, but you'd want to check the sound quality in cheaper ones.

And if she says she won't wear them...? You know what you can and can't negotiate with her, but I'd call this a suitable occasion to be assertive with her. If you can once get her to try them and hear how much better she can hear, it'll be worth a battle.
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Dee, welcome hugs to you!

Um, just one thing - you're not still angry with your mother and her siblings for not taking in your grandmother, are you? You're 59, and crucially you are trained and experienced, and *you're* finding the job exhausting - so how on earth would they have coped?

But on the other hand, seeing as they presumably applauded your decision to rescue THEIR mother, they could perhaps put their hands in their pockets and buy you some respite hours? Money is the sincerest form of gratitude, after all.
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For me it's the suspense. Always expecting the phone to ring with "he/she hit the med-alert button again..." Or knowing that not only one but both of them will probably die in the next couple of years, but who knows when or how, and then the funerals...the paperwork...cleaning out the house that's completely stuffed with objects...selling the house... Knowing that all of this is coming down the pike. This is in addition to dealing with the actual care taking that's going on at the moment that just seems to keep getting more and more complicated.
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Chipmonk57 Nov 2021
Canonlylaugh. Just joined this website. After reading your post, all I can advise for what it's worth, Live one day at a time! Stop projecting into the future. When you PLAN, GOD laughs.

My situation is different. I am not the caretaker. I have done EVERYTHING for the caretakers and they are still not satisfied. Too much to list here so try that on for size. I'd like to see a forum for my situation to vent. I sure could use some advise on how to proceed. Good Luck and Blessings to all who have vented here, but remember life happens and we all get a chance to become the one who is being cared for.
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I agree with AlvaDeer... the pain and loss of dignity for the patient /loved one is extremely difficult. However, looking back, my parents never did the things for their parents that I have done/do for them. They continued with their lives. My mom was fixated on decorating her mother’s room at the NH. My dad visited his parents on occasion. It was completely different from the care I have/do provide.
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Today the thing that bothers me the most about caregiving is I haven't been able to go anywhere for months.

Today I drove 1-1/2 hours to go to the doctor for me (not Mom, not my husband). Since I was going to be in that town I went ahead and coordinated some other appointments (service the van, get supportive shoes for my painful feet). Left at 9 a.m., got home at 3 p.m.

In the meantime, my mother got out of bed by herself (despite the full length rails) between 9:30 and 10 (my husband checked at 9:30 and she was asleep but was out of bed at 10). Bath aide came at 10:30 and got her dressed (assuming she also cleaned her up since my husband said he didn't). My sister came by at 2 on her way home from her doctor's appointment and said Mom had no diaper on and was totally wet. She took care of that and also did a "spaaaah treatment" (nothing on Mom's bottom half except for a blanket, with warm air blowing under it to help with the diaper rash).

After my sister left and we had our dinner, I checked Mom's room to make sure I had all her laundry before I started the washer. Smelled urine. Felt the floor and it wasn't wet. Checked her bed and evidently Mom made her bed without taking the wet pad off (probably totally unaware she was wet). So I stripped the bed and put sheets in the washer too.

Hmmm, it sounds like I'd complain if I was hung with a new rope, doesn't it - because I really did have a lot of help. It's just frustrating that I'm the only one who either noticed the pee smell or looked to see where it came from. I feel like I shouldn't go anywhere at all.

Now that I've said/written it and read it, I realize how very blessed I am to have had the help I had. If I had a friend who was in the same situation, I'd probably say "get a grip, girlfriend. Your husband, bath aide and sister enabled you to be able to go out for a day to run errands. Be thankful Mom had someone with her and took care of her obvious needs." Sometimes self-compassion requires a reality check instead of a pity party.

I do appreciate this forum. I feel so much better since I found it a few weeks ago. I don't feel totally alone and unsupported anymore and it has helped my emotional health enormously!

Blessings to all of you for listening!
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DotsDoc Feb 2021
I have just discovered this community and you have inspired this post. Sounds like many moments here...Urine smell is one thing that mom would not like IF she were able to care for herself. Out of respect and trying our best to keep her feeling loved and cared for unconditionally. It often makes me think of and pray for the GOOD overworked CNA’s that have multiple aging adults to provide care.

The days when it feels like I’m on solo...I know it would be overwhelming much without my family supporting the journey with love. Thank you for the shift and the moment to bask in gratitude.
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It isn’t easy to pick a ‘single’ thing.

It would be a variety of things depending on what was happening at that time.

If I was forced to pick just one it would have to be witnessing pain as the absolute worst thing.

I do not handle seeing someone in pain very well.
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The fact that I’m resentful and angry at my 90 old mother. Just about Everything mentioned here it seems like she does to some point, and it’s good to see how many others are dealing with this. I pray daily for compassion and strength, but lately she is really pissing me off, and I have it so much better than others here.
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NeedHelpWithMom Dec 2020
A long time ago, I was speaking to an older woman about praying for patience and strength in regard to raising my children. She told me to stop praying for patience and strength, unless I wanted more trials and tests. She said to pray for wisdom. I never forgot her words. Her advice helped me to learn to face challenges and keep my sanity!

We can raise our children the same but they are individuals that have their own perspective on life, which is a good thing. I raised my girls to be independent thinkers.

I was having a few challenges with my youngest daughter.

She was the kind of kid who didn’t take anything at face value.

I took them once a week to the library. My girls inhaled books!

She would ask me to drive her to the library to get more books. The library was closed. This kid didn’t believe me!

In frustration, I drove her to the library and allowed her to try to open the locked door.

Hahaha, she looked at me and nonchalantly said, “Mom, they are closed.” She had her proof and I had my sanity! Luckily, it was a short drive to my library.

My oldest daughter took everything at face value. She never questioned the library not being open.

We are all unique individuals that see things our own way. We will rub others the wrong way at times and they will work on our nerves, whether they are our kids, parents, neighbors, etc.

I don’t think we can ever avoid friction! Sometimes we just want to scream. I wonder why the ‘scream therapy’ of the 60’s didn’t stick around. Hahaha 🤣. Maybe therapist were getting headaches and going deaf! I remember John Lennon and Yoko participating in that type of therapy.

It’s so much harder with parents than children! Children grow up! They leave!

I think having parents live with us is a much bigger challenge than anything else.

It certainly was the toughest job that I ever had!
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