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Been to the downs of caregiving which is called "vacant"? empty, drained out. Pls share some revolutionary tips. Only for sole caregivers who don't get help from anyone.

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I am amazed everytime I read these and hear the stories as they are so close to mine!
I need to pull out my beads now n then and make something sparkly! I can get lost in them for hours never a care!
But somehow caregiving has stolen the simple outlets as well,
My poor lil Jack Russell Terrier (I mention his breed because they need the excersize) is a saint, he has learned to sleep most of the day but he also can just look at me with those eyes saying come on, lets go, And I just wanna cry I tell em im sorry lil boy, I can't! when I can and should just snap a leash on and get out for a few....he and I would both be the better for it!
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Keep it real. Strengthen your mind and body. Read, yoga, nutrition, laugh, be honest, cry, talk, write. Pray, or meditate. This will fill the vacancy, which I don't think is really vacancy, but a form of isolation boredom. You need to interact in real life, even if with birds and animals. It will bring you a connection to the divine.
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Vicodin works wonders. Maybe not the best advice, but it's been working for me lately.
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Oh captain, your mom.
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@ jeanne,
" madness " lol
beeeb-abeeeb-abeeb-abeeeb, etc. mom has been standing in the driveway this am hurling my sockets and wrenches as far as she can throw em. cool, this is better than warner bros cartoons.
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Bookluvr, my condolence, hugs & love to you across the planet :-(

Hope with all the support from us here at this website, you'll gain some strength during this difficult moment for yourself & your dad. My prayers to you. GOD bless. Hugs. Love.
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Kamil, sorry that your country has not progressed enough when it comes to elderly care. I believe having an organization or a caregiving group starts from someone on the ground, called grass roots. It will have to take a lot of normal people (small people, poor people, middle class people, etc) to get together and decide to do something. They hold meetings, go to businesses for sponsorship, etc... In the US or Canada, etc..it did not just happen suddenly. It starts from the bottom and works up to rich and powerful. And it takes YEARS to reach where the US and Canada are. The same applies for any organizations. It starts small and spreads among the people and then goes up to rich/powerful for sponsorship.

By the way, I sometimes type here and mention mom in the present tense. Mom has passed away just in March. So, I'm now caregiving for bedridden father who at the moment wants to die, in severe lower back pain and refuses medical help. I've been doing some running around the past 3 days. I am now down to my last card and will just have to give up.
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Dear bookluvr. Im sorry that you suddenly feel tired. I know that taking care of 2 bedridden parents is so overwhelming.
Ok, back to above, YES, i did Google & everything else. Short story, maybe the society/population here is not ready/enough quota for the government/NGO to elevate this matter to its proper/relevant place. We dont have the Medicaid thing. We do have Welfare Dept but mainly only for really poor people. Elderly care is rare in the list. Just basic welfare issues. In a way, I think USA residents should be very grateful enough to have all the resources they could get accordingly to the disease/care. I guess thats why the "vacant" feel follows me everywhere. And also related to my other question about sharing photos/videos; is all about creating awareness. That this is real. We cant be alone. We need to be heard. We have to care for ourselves too. It could happen to anyone/family/generations to come as the worlds elder population is increasing. Not forgetting all the complicated diseases that "suddenly exist" nowadays.
So when there's no awareness, the taboo/stigma thing affected the families, friends, workplace, society, religious parties, etc & the nation as a whole.
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Kamil, have you tried Googling for a caregiving support group in your area? In our island, our support group started out from the University program. They wanted to do a study of the increase of dementia on island. Father found this program from calling around. The program would provide a limited time service of their caregiver to come once a week and limited supplies for mom. In exchange, they would do home visits,test mom and document the changes that occurred as the years go by. That program then became independent from the university. But, this program also included monthly caregiver's support.

What I'm trying to say is first call around the government offices for any recommendation of programs that you are not aware of. If that doesn't work, then call the nearest university if they have a program for elderlies. If that doesn't work, then find a Christian religion and ask if they provide services.

My siblings finally took 23 years later to start helping us. In all those years, I updated them by slow mail (post office), email, and then texting. They don't care to help until they are good and ready to help. The more you make them feel guilty, the angrier they get. And they won't help...I just suddenly got sooo tired. I will close for now.
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Owhh another thing is VENT out. From my personal experience, to find a really genuine listener is hard. Most dont understand what we been through or just dont want to understand? I dunno. Not sure if they scared or just don't know how to react. The word caregiver itself is like alien or UFO which u need to explain with science! Even if I show pictures/videos(only to closest ones) the reaction is so passive that I feel like to slap their face (my siblings). Need them to do groceries, dad's facial grooming, cutting nails, watever. All the life's basic. If they cant stand the poops & bathing its ok, that might be my specialty. Which i think is not. Someone just has to do it. The rest of family/fiends will just owhh...ahhh...I see. So how do we ask for help when all we get is passive response?
Venting out online is fine with me. Its just not the same like venting it live, in person, in reality.
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Dear babalon. I've read about u wanna write a letter & I do too!!! Like since last year but til now it's only scripting in my head. Well that's another story.
And because it is related to the taboo/stigma thing. I'll try to make it short here. Despite our culture & religion in brought up years, thought with good values, be kind to everyone, respect the elders, etc etc; somehow the majority of us dont display that values when they grow up. Im not sure is it because of today's lifestyle which are all about success & status? Where's the love & compassion? Which I think that should be another story again. Gosh. Im kinda sick writing this now. Lol. Trying to laugh :-(
So, taking care of parents is like a setback to own life, success & achievement. Mostly very rare will happily/volunteer to step up & say "Let me do this". Furthermore, if the family dynamic is bad, it is worse! You know the hauntingly pasts that follow them. Instead of thinking "my parents are sick/dying, I should do this". It is not publicly addressed, what more in the family itself. We do have very very very little elder facilities which i dont know where. Maybe just in the big city which is no good in my journey. Awareness is like none. So those who struggling will normally be unknown & alone. If I were to find my fellow caregivers here, I won't spend my time here all the way from Malaysia.
Im yearning for the idea of taking turns in caring because it is tiring physically, emotionally & mentally. And we need to take care of ourselves too. So I guess we are all about the same here & yet each of us has our own kind of journey.
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kamilghafur, I'm a nosy bird...just asking out of curiosity about another culture! So don't answer if you don't want to, or can't...I understand.

But I don't really understand what you meant about taboo stigma? Is it taboo to take care of your elderly parents in your country or just taboo to discuss it? If just about discussion, does that apply to family, too, or just maybe to public and strangers?
If you can't talk to ANYONE at all because of that it must be really hard!
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Greetings from Malaysia. Just sign up yesterday. This caregiving thing is taboo stigma in my country. Hope you guys understand. Glad to find this website & you guys here. My resource about everything on elderly care. Thankyou :-)
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I do not believe that there is ever a situation (in the US) that someone MUST be a sole caregiver who doesn't get help from anyone. True, it is often the case that a caregiver cannot get help from a family member. But that is not the only source of help.

Are you in the US? (Your profile doesn't say.)

There are churches, organizations sponsored by United Way, organizations sponsored by our taxes, professionals and volunteers. Is it hard to find the right resources? Yes, sometimes it is. But it is NOT impossible. What avenues have you tried, so far? Have you called your state's Department of Aging and Disabilities (or whatever your state calls it?) Have you called your county's Social Services?

What I personally found most helpful was calling Social Services for a needs assessment. One option that I discovered that way was an organization that sent volunteers in for a few hours a couple of times of week so I could leave the house. At the time it was free and now I think they charge $4-6 per time, to cover their administrative costs.

Another resource the social worker put me in touch with was Adult Day Health Programs. We found an absolutely excellent one.

Are either of your parents veterans? Have you looked into what benefits they might be entitled to?

Might either parent be qualified/eligible for Medicaid? Medicaid had a program (called different things in different states) specifically set up to provide services to help seniors or the disabled to stay in their homes instead of going to nursing homes.

Kamilghafur, you mention in your profile being bipolar, but I couldn't tell if that was an off-hand remark or a diagnosis. Do you have a caseworker yourself? Are you on disability?

There IS help available.
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My advice is DON'T be a "sole caregiver who doesn't get help from anyone." That way lies madness or vacancy which leads to madness.

The number one thing caregivers MUST do to avoid burnout is get some respite. This is not optional if mental health is to be preserved.

And to have some daily help.

If the loved one has assets and/or income to afford the costs of in-home help and respite care, that is what the assets and income should be used for, until the money is gone. Then Medicaid can pick up the gap. If the loved one has no income or assets, then apply for Medicaid immediately.

I know that as a caregiver, hearing "find respite" sounds like one more thing to add to an already overwhelming to-do list. But it needs to go to the top of the list.
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Those are great points! The "WHY am I here" and the "If money were NO object" are pretty much the root of the issue when it comes to deciding what is best for EVERYONE involved. If that's possible, then it is the only way to go..and then with the largest number of satisfied voters, if you dig. But if anyone does not at least in some degree WANT to take personal care of the elder in question, then it can so potentially turn ugly...for everyone involved.
It is okay if the elder alienated everyone in their lives before hand but saved enough or built enough to pay for their infirm end years...it is kind of like karma although I won't say that it is (cause I'm not sure myself what's what).
You reap what you sow.

Why am I here?
Because the first time I envisioned my mom in a nursing home as a hypothetical solution to the issues she was facing at the time, 10-11 years ago when I first came back home, I could not abide it. I could not stand to think of anyone in the family putting her in nursing home. I have worked in them. They are not bad places but they are not home. My mom is not the type to do well in one, and I have always known her that well...and 10 years later I know her even far better. And I think that is part of the 'why' am I here answer for me, too.

If money were no object for us, my mom and I, I know I would definitely keep her here and use the money for hired private trustworthy kind help, supplying all needs I possibly can from diet to wardrobe, etc., making sure she got the BEST care money could buy in our own home under my direct supervision.
You know, the old lady in the crochet shawl sitting out on the veranda each evening about mint julep time.
LOL

So the only real difference is that we don't have a veranda and I don't have anyone to supervise myself, which, actually, is better/easier for me in the final rackup, I think. (yeah right...keep on telling yourself that)


And I think I'm going to go buy me a powerball ticket in a minute. "~)
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Ask yourself "If money were no object, how would I handle this situation?" Just for the fun of it. What answers do you come up with?

Would the patient be placed in some place other than in YOUR home?
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Thankyou all for the insights. It's great not to see the oh-so-common answers. I'm not against the feel good, uplifting, spirituality ones. They are great too. We just need something different this time. Keep it coming!
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I'm new here. And thankful to come to a thread where people aren't prattling on about how caregiving enriches you life, gives you courage and compassion, yadda, yadda, yadda.

And Captain, I like your suggestion. LOL

My suggestions: Realize that when the elderly person is hospitalized for one of these falls, THAT is the time for there to be a change in their living situation. You MUST say that you will not be able to further care for the person. Period. And likely, you won't.

If the patient has the money to pay, fine. If they don't, find out what Medicare will pay for. My grandparents ended up in a County old age home. And it actually was not all that bad. (My mother, who is now 93, wasn't about to bring them into HER home!)

FWIW despite my mother (see my question post about having to break contact) making statements that she would never leave her house, that "they would have to take her out of there ten toes up", she is now happily the "Queen" of the facility where she lives. It is one of THE most expensive facilities in this fairly large city. The cost is $6,000/month and she is on self pay. Depleting the inheritance? Oh, yes, but hey, it's her money.

So, you need to look at the situation and ask yourself some questions. WHY are you giving care? Is it a money issue? In what way? When my grandparents needed placement I went to both my County Representative's office and my State Representative's office and requested assistance. Lo and behold, despite a "long waiting list" they were placed within 2 months.

When you look into it, despite almost every elderly person saying they "don't want to go into an institution" and they "want to stay in their own home", they almost always do better and have a better quality of life once they move. Alone at home the older they get, the more they become socially isolated.

My own situation is different. I was not an in-home caregiver. But I was an "only" caregiver, despite having a sibling. (And that's another whole story)
I also did not have a particularly good time of it with my elderly mother over the past 10-12 years of her decline. (As in, my husband was diagnosed with Stage IV kidney cancer, and despite aggressive treatment, died 14 mo. later at age 60. Three MONTHS later in a conversation with good old mom, I teared up when talking about him. Mom looked at me and said, "Are you STILL crying about him?? What's wrong with you?"

And yes, I was my husband's caregiver. He died at home as per his wishes. "No hospital" were his last lucid words to me.

If I could help anyone here in any way, as a "newbie" to this board today, I would ask that you ask yourself WHY you are in the position of being the caregiver. Really, really look at it. And don't ever think that things can't be changed.

Take care of yourself,
Deeana
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Ah, I fit the bill perfectly. No help from anyone and sole caregiver for over a decade.
I recently hit what I discovered to be a new 'rock bottom' I had not realized existed. The emotional rock bottom. Vacant...drained...unable to remember what it was in myself that had always kept me going before. None of they ways I used to help myself made one bit of difference. I was literally at the end of my rope.

Then my mom broke her second hip and had to spend 3 months in a SNF so that she could regain as much function as possible...if not walk, then standing at least. I'm not sure we got there because I had her home one day and she broke her arm...I think we still have some potential progress with HHC OT and PT but I digress.

The three months was more for me, I suspect. I realized last night that I was finally able to get my ducks in a row and now, I am finally feeling equipped and able to deal with the unpleasant surprises that invariably come with caregiving. At first, I thought I had kind of wasted the three months because I basically did nothing productive, including housework...just sat around, played games on facebook and vegged...visited with friends but not as much as I thought I would.

Now I see that I was working on myself mentally. And I did some paper crafts (I love paper) which I had not done IN MONTHS or maybe YEARS...I listened to music...I talked to myself...I did get slightly impaired whenever I felt the nudge...and was able to reflect upon things and see what I should change when mom came home. Of course, "the best laid plans of mice and men...." but that didn't matter. I had regained the ability to handle things. I hope it lasts...I think it will because I somehow gained a new perspective.

That's not helpful, perhaps, because you might not have the same opportunity....it was tragic she broke her second hip but in a way it was exactly what was needed even for her in many ways I won't go into here.

And being all alone means that it is near impossible to get a 3 month break outside of personal catastrophe. I had, before the break, decided I was going to call my 3 half-siblings and tell them that I could not go on without some sort of weekly break if even for an afternoon and it was going to be up to them to work out a way to provide financial resources to hire a private pay sitter from the HHC to sit with mom a few hours a week in order to save the sanity of the caregiver that was preserving the comfort of THEIR (siblings) own personal lives.

However, not knowing your situation, that might not be an option. It might give you a seed to start from, though...I hope.

I think that it is ESSENTIAL to have some sort of regular break any way possible. When mom's arm is healed in a couple of weeks, I plan on sending her to the local senior center a couple times a week and the adult daycare another couple of days. It will be good for her and for me. And it is free.

If I think of anything else, I will write it for you.

Also, if you have any hobbies you enjoy and can do at home while 'at ease' in your caregiving duties...pick them back up and do them! After I got my first craft project completed, I was amazed at how much better I felt inside! I thought, damn...why wasn't I doing this all along? How did I forget how good this is for me to do??!!?

It is sooooooooo easy to forget things like that when consumed in giving care 24/7 365 days a year. You put it aside for a day or two and the days turn into weeks and months and you just forget even those things that maybe at one point were so much a part of you, you didn't have to remind yourself exactly WHY they were a part of you. The essential things....creativity...imagination...music...reflection...just taking time for self. Any little moment you can grab for yourself...GRAB IT.
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get slightly impared every now and then and let your favorites on youtube take you away..very goog escape / diversion.
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