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"@BarbBrooklyn wrote "The MINUTE your parent gets admitted to a hospital/rehab or other facility, contact the "discharge planning office" and start a conversation with them about where your parent will reside next."

Can you elaborate on the issues making this necessary?"

What my brothers and I found over the 7 years that we were managing mom's care is that the MINUTE she got admitted to a hospital or care center, someone was planning for her discharge.

We found that it behooved us to find out who that person was and be part of the planning so that we weren't caught off-guard. Hospitals tell you "your parent is being discharged tomorrow; where are they going?". Rehabs say "Medicare will no longer pay as your parent has plateaued; are they going home?".

YOU need to know that these folks expect you to have a plan in place. Have a list of local rehabs/LTC facilities that you've visited and which ones you find acceptable. Make sure that they will accept Medicaid after a year or two of private pay.

And know as well that you CAN'T set up Home Health Care until the patient is AT HOME. So the first 48-96 hours after discharge are either family taking full care or hiring 24/7 aides privately.

These are all things that I so wished I known before my mom started to decline.
(23)
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2. No guilt. The loved one you're caring for may try to impose FOG (fear, obligation, and guilt) on you. Don't accept it! You didn't create this problem! You showed up to help, not sacrifice your marriage, children, bank account, or sanity! Alternatively, the guilt may come from inside you: that niggling little voice that says, "You're not a good son or daughter if you don't (a.) move Mom or Dad in with you or (b.) capitulate to every demand." Help comes in many forms, like assisted living or hired caregivers. Utilize it! Again: No Guilt!
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Great thread, Barb.

I am the spouse of my FIL's primary caregiver, who also is his dad's POA both medical and financial. Lessons I've learned:

1. Do NOT accept responsibility for caregiving for anyone without have the authority to do so. That means getting durable power of attorney for both financial and medical sorted out before a crisis happens.

2. Except under special circumstances, the primary caregiver should be the one who is granted durable power of attorney for both financial and medical. Special circumstances include where one child is a CPA and another is an RN or MD and it makes sense to split the work. But both names should be alternates named on the other POA. When splitting POA, both POAs must also have a good relationship.

3. Healthy boundaries are not optional, and must be established at the beginning of the caregiving journey and not as an afterthought because caregiving may last a very long time. Healthy boundaries also extend to well-meaning or nosy family members, friends and neighbors.

4. Spouses are partners in caregiving. What affects the caregiver also affects the caregiver's spouse.

5. Caregiving may or may not be hands on. No one can provide care 24/7. Managing care is also caregiving, and also is a lot of work. Both types of caregivers are at risk for burnout.

6. Do what you can with love. When the love is gone, it's time to find someone else to do the work. Caregivers are at risk for compassion fatigue.

7. Take a vacation or staycation.

8. Set aside time for yourself every day.

9. You do not need to explain yourself - not even to your parents - just because you were asked for an explanation.

10. Having POA medical and/or financial means that you keep the person's medical and/or financial information private.

11. Doctors take advantage of Medicare. As medical POA, do not be afraid to advocate for your loved one. Does your loved one really need to be seen in the doctor's office every 6 weeks? Probably not.

12. Banks often do not accept financial POAs and require their own paperwork, which can only be completed when the loved one is still in his/her right mind with no signs of dementia.

13. When signing anything as POA, always sign "As attorney in fact for [name]".

As already has been said, caregiving must work for everyone involved.
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To new posters: if any of us on the forum START USING ALL CAPS or if we use a lot of !!!!!!!!! Please don’t take it personally.,It is not an attack on you. We do it because we are passionate about what we are saying and we are just trying to convey something that we are trying to get across because we have already been through it and we are trying to prevent heartache for you. It’s how we talk on here and please please don’t take it personally. Usually an OP puts up a topic that hits a nerve with us. We don’t mean anything by it.
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Elaine is wright...when a poster uses CAPs they are saying "this is really important...pay attention".
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Talk to your parents about a will, a DPOA, their medical wishes, and maybe putting the house in a trust if their care gets financially complicated. As dementia sets in, any paperwork they may have already prepared will be harder to track down. Get organized early.
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1. Be aware that all these events may come on suddenly. Not all illnesses are a slow decline in function. It can be in the form of a stroke, fall, heart attack, etc. My mom's started with a colon blockage! What I am saying is you may not have years to put a plan in place.

2. Don't call it a nursing home. Assisted living, senior apts, rehab, new apartment are all better terms. Take the loved one on a tour of a modern facility. In their mind, they remember old, dreary, stinky facilities of the past.
(15)
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You may also call it a care home where nice staff help(?).
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Get a reality check what you can and cannot do, and BE HONEST. If you cannot care for them 24/7, you need to organize estate planning and get them Medicaid ready which means a trip to an eldercare attorney. Do not mince words--call it what it is...a nursing home.
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Sometimes this could be a very difficult situation; particularly if the child has never had any caregiver experience and if the parent is persistent. I think in many cases the parent will develop dementia and it may not make any difference to the parent where they are living because the parent will not understand and cannot comprehend the change in living location. These variables have be considered by the caregiver. It maybe better to placate the parent now, but make some tough decisions later when the parent is deemed incompetent.
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One can substitute 'spouse' for parent. I wish we would have had this conversation at the beginning of our journey. I never promised I wouldn't put him in a facility. However, he just assumed I would care for him. Doctors and elder care / estate planning attorneys never seem to bring this up during appointments. If blank (name) is no longer to safely care for you, what are your plans? This needs to be discussed at the beginning of anyone's possible long term health diagnosis - if it wasn't previously done.
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Such good advice here about not promising more than you can deliver. I know that none of my own family (no children, only siblings) would be able or willing to do hands on care for me, so I tell them it's quite all right to hire care takers or put me in a facility.
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From what I've seen on various posts through the years, "this would be an unsafe discharge" are the magic words to be used when someone is about to be discharged from a hospital and the hospital staff assume (or are trying to coerce) another family member to take the patient home for care when this other family member is unable, or otherwise not in a position, to provide hands-on care for the patient. This obligates the hospital staff to seek alternate sources of care for the patient, such as rehabilitation or a nursing facility.
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Please keep in mind that when your loved one has Dementia/ Alzheimer's disease they are no longer the same person!
It can be frustrating dealing with the disease. There is no rhyme or reason to the things they do, say or remember! Patience is essential!
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If your parent bought long-term care insurance, are they still paying the bills? Or did they cancel it and forget to tell you?

How much does the long-term care insurance cover, and for how long? If you can't figure it out from the paperwork, call the company and pretend to be your parent so you can ask.

Most policies cover a certain percentage of care each month, up to a certain total amount--which usually works out to be about 3 years. If the bill the parent pays for long-term care insurance is higher, then the coverage would last longer, maybe 4 or 5 years.

But so many people who purchase these policies assume that their long-term care bills will be 100% covered for the rest of their lives. Even if the parent signed up before cognitive decline, they probably did not fully understand the policy details. They dealt with a smooth salesperson who was well-trained in creating a trusting relationship, and specifically trained to dodge every practical question. Then your parent was presented with a 50-page policy in tiny print, and told where to sign.
(8)
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I realize everyone’s situation is different, but in my case, I wish I had made more decisions sooner, acted on my own instincts, and made more statements (versus asking questions or giving choices). Trying to pretend, or attempt to make my LO “feel in control” only caused more frustration and anxiety for them.
(9)
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A Medicare recipient is entitled to Medicare paid rehab or skilled nursing in a facility only after a 3 midnight stay as an admitted patient in a hospital. The key word is "admitted". People have been placed in hospital rooms and given meals for 1-2 days before being admitted for 1 day and then discharged. That person is not eligible for Medicare paid rehab/skilled nursing. Ask to speak to the charge nurse at the hospital and see that your loved one's charge says "admitted".
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Remember that NO is a complete sentence.

Use it when needed without explanation.

Failure to plan on anyones part does not constitute an emergency for you.
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Another suggestion--ask questions about anything you want when someone goes into a facility, or if you find surprises on the bill. The first NH in which my mother lived had a $15 "incontinence fee" for each change they made, and one month it was nearly $800. I challenged this, asking along the lines of "isn't this simply part of the type of care one would expect in this type of facility?"--and they removed this charge, including those for the previous months, and never added them again.

Remember the saying about the "squeaking wheel getting the grease"!
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2. I am not superhuman; I will do whatever is IN MY POWER to help you, but I may falter.

Thank you for starting this, BarbBrooklyn
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Know that Urinary Tract Infections can cause symptoms that mimic psychiatric issues--paranoia, forgetfulness, personality changes.

A sudden change in mental status in an elder should ALWAYS be reported to the patient's doctor and UTI should be the first thing ruled out.
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Keep a list of your loved ones medications, doses they are taking, time they are supposed to take them with you at all times. Make lots of copies of this. Reason being you never know when an ambulance will need to be called and the paramedics need this info stat. Scrambling around for the medicines won't be necessary then. You can just hand them your list.

Also, don't take it too personally when your loved one treats you differently than they have most of your life. If a usually loving mother/father etc. show unusual hostility it's because they are going through major life changes, physical and mental. It's not you. You did nothing to cause this.
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If you've had a difficult relationship with the person you are caring for things are not likely to improve at this point. Caring for a user/abuser/mentally ill person in some kind of last ditch effort to win love/respect before it's too late only works in the movies, there are way too many people who come to this forum who are involved in totally effed up family dysfunction.
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PLEASE....when providing information in your profile...
give us as much information as you can if it is not included in your question but....
DO NOT INCLUDE YOUR FULL NAME, THE NAME OF ANYONE ELSE NOR YOUR FULL LOCATION. The state where you live is helpful but not the town.
believe it or not there are creeps out there that will take advantage of any tid bit of information they can get.
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If there's something elder (or relative/onlooker) has requested/demanded that I do, and it's become problematic that I am not "following through" with it..... Often, the assumption becomes that I need to be "reminded" of my "responsibility" to the person. People who want certain things will bring it up repeatedly and then again and again - dragging others into it to gang up on caregiver (who is often helping out of the goodness of his/her heart). If I'm not doing something, it's not that I didn't understand the request, didn't remember the request, or simply didn't hear it. More often than not, if a duty is being "neglected" it's more that I don't view it with the same urgency as others do. Or, it may be something that I simply cannot or will not do for you right now - and possibly never will. Bringing others into the mix to try and bully me will not get you what you want and it significantly contributes to caregiver burnout where we may toss the hands in the air and walk away. Many of the issues can be truly trivial things, but stressful situations lead to ALL issues being approached with equal urgency and caregiver can't do it all. Boundaries and clear communication are key, but even setting limits (and enforcing those) can be a full time job with some people - and even more so if mental illness is in play. I think it's important to remember that good intentions do not always lead to the optimal/desired outcome and some families really do splinter over elder care. Chances are, caregiver did the best they could. If something does not work out (or just wasn't possible from the start), it is not a reflection on the caregiver as a human being. Ridding yourself of doubts and "what ifs" can take a very long time.
(5)
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Newbies. Heed the advice you’re getting here. So many have been through the same/similar situations as you are or will meet. Be prepared. In caregiving there’s nothing new under the sun.
(6)
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I'd like to piggyback on Gershun's advice about having copies of medicines available. I keep a list on my phone so it's easily changed as needed and always with me.

It's also a good idea to have a "to-go"bag packed for trips to the ER. One for you and one for your LO. Here's a thread about what to pack...

https://www.agingcare.com/questions/what-do-you-pack-when-you-take-loved-one-to-er-449531.htm?orderby=oldest
(5)
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Go to bag for YOU! I traveled with two changes of clothes, an extra cell phone charger, pjs, toothbrush/toothpaste and deodorant in the back of my car for 3 years.
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Okay, Newbies...

This one might sting a bit in the beginning, but please read through to the end.

I really haven’t been following any threads lately - more of a random selection - but I’ve noticed several comments from some newbies saying that they feel they’ve been
spoken to harshly and/or unfairly.

My newbie advice? Grow a thicker skin. Now - hold on before you get insulted. Hear me out.

I was my parents caregiver for six-plus years. My father passed early in my second year and my mother filled out the rest. Dad was relatively easy - kept his mind but the physical decline was brutal. Plus - I adored my father and he me - so it really was a privilege. One that broke my heart, regardless. My mother. Let’s just say it was AWFUL. The dementia got so bad in the end that her official cause of death was “malnutrition” - because she had forgotten how to eat. And - she was a difficult person, always was. Looking after my mother nearly drove me to a mental and emotional breakdown. If I hadn’t found this site at about year five - I do believe I would have had one.

Okay. So - I’m the kind of person who really doesn’t give a rats behind about what other folks think of me. My parents, my husband and my son and my best friend. That’s it.

During my caregiver years a whole bunch of people said some pretty nasty things to me. My mom. Doctors. Nurses. Bank employees. Rehab staff. Facility staff. people here on AC. My brother. My mothers friends. On and on...

For the most part - while some were just annoying, frankly - much to my surprise on the two occasions I was actually reduced to tears. It was from things said by two total strangers. One was on the phone - a customer service rep for Wells Fargo - during year one. The other was a nurses aid at my moms AL - year six.

There were a lot of nasty comments from a lot of people in between but these two comments just happened to come along when I was having rough patches and was feeling particularly vulnerable.

But, you know what? They didn’t know that and what’s more - they likely wouldn’t have cared even if they did. Some people are just mean, unhappy chits who like to spread the misery around.

My point? If you stick with this - the caregiving - this won’t be the only place where a minority of people out there - are just gonna say hateful, crappy things to you. They don’t care that you’re trying your hardest and sacrificing a chunk of your own life and physical/mental wellbeing in the process. If you let yourself get hurt and worked up every time it happens - well, thing are gonna be that much harder and you won’t last long.

Please know that the majority of
people - especially here on AC - are generous and kind. That they really do want to be helpful. The rest of them? Learn to say - at least in your head - “You can go kiss my exhausted azz!”


Good luck. I’d like to say it gets easier - but it doesn’t. Sorry!
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Not you - them.

But, basically - yes. Cause getting and remaining upset and hurt isn’t accomplishing anything - but keeping you upset and hurt.

I give this advice because - I have been EXACTLY where you’re at. Well - except for the Covid part but I could fill that in with one of a few serious health crisis I had while I was looking after my crazy, mean as a snake, mother.

Learn to blow it off. Seriously, why let a completely anonymous stranger upset you?
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