New Posters! Read this.

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.

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".

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.

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.

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!

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.

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.

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.

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.

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.

You may also call it a care home where nice staff help(?).

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.

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.

Elaine is wright...when a poster uses CAPs they are saying "this is really important...pay attention".

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.

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.

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!

"@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.

While your LO is mentally competent, have a discussion early on about quality of life vs quantity. That way, you know how they stand should the time come they are incapable of making decisions.
In that same vein, as your LO approaches the end, sometimes doctors look to do procedures to extend life at cost of quality. Ask about the benefits vs the cost - and I don't mean monetary costs. Sometimes, a peaceful pain-free death is not the worst option on the table. Some doctors, however, have a hard time reconciling that fact.

@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?

The number one thing here that drives me crazy is the posters who quit their jobs, sell their house, move across the country, walk out on their families to care for an elder then cry NO ONE ELSE WOULD DO IT SO I HAD TO!!! No you didn't have to, you chose to.

To a new poster....please never consider doing anything that would jeopardize your future or your family's future. You can help without giving up your life. Often a poster is conned into giving up their life because the elder refuses to make even one change in theirs.

Don't fool yourself into thinking you can solve all their problems but just doing.....
You can't..especially the problems that they purposely made.

If you choose to help do not get mad at others for not helping too. You made your choice, they made theirs. Neither of you are wrong. Or so often we see you did realize you chose wrong and now want everyone else to suffer along with you.

Cannot stress boundaries enough. Make 'em and enforce 'em.

to late told them long ago.
Siblings took full advantage that Parents were always my responsibility. They went to Lawyer Mom already had dementia. I am not POA or Health Proxy, if you think something is wrong it is. Greed makes a big difference, make sure you have rights in writing, no one will help you later.

Be very careful of those who try to control you with guilt.   This can be very subtle and manipulative - not always easy to see.  This includes guilt from the person receiving care, siblings of the person receiving care, children, neighbors, and healthcare staff who are trying to discharge the person into your care.    If you are a caring and energetic person who is willing to try their best, there are those who will exploit that until there is nothing left of you.  You'll be a shell of your former self and no one will care.  Remember to enforce boundaries even if you are vilified for it in the short term because you'll still be better off in the long run.    Do not "give" more of yourself than you can afford to lose permanently.  Some people are just takers - and it's not always the people you're expecting it from.

Stick to the facts and a lot of times the solution becomes obvious.

"BarbBrooklyn" what an excellent idea to do this and I'm looking forward to reading all the comments when I get a chance. Although I'm not new to caregiving, I only wish I could have had something like this to refer to instead of floundering by myself and with my husband whenever he could. I've had to learn everything the hard way with no input, support or help other than starting with the "Area of Aging Agency" but after that meeting, I was on my own. Thank you for myself and on behalf of all other new posters!

My mom did ask me to promise her years ago that I would never put her in a nursing home - she wanted to live in her own house until she died. I never did "promise" her that. When I had to place her, I moved her into an IL/AL facility and now she is in a new IL/AL facility in the memory care wing. I found a place that didn't look anything like a NH. Being that my mom is 95, I think she remembers visiting a couple of her high school classmates who lived in a NH in a very small town in Western Nebraska and I think it always haunted her thinking that is what they all are and look like. So many places have come a long way from that image - thankfully. She likes her new place even though it is quite a bit smaller than the previous one because of the cost plus the fact she really doesn't need a bigger one anymore since she declined this year.

Here’s another one for new posters. If your elderly parent is competent, there is nothing you can do. If your elderly parent doesn’t want to go to a nursing home, there is nothing you can do. If your elderly parent is competent and refuses to bathe, wash their hair, change their clothes, live in a hoarder house, there is absolutely NOTHING you can do to help that person. YOU CANT HELP SOMEONE WHO WONT HELP THEMSELVES!

Barb,
Thank you for this thread! It is so very interesting, and I think will be very helpful to new posters.

There are some retired professionals in various helping professions, and some currently working caregivers who post here. They too are greatly appreciated for their time.

However, no one is licensed to practice law with a poster here, or use their R.N. license, social work, therapy license, CNA, or give actual medical advice as a doctor specific to a patient.

The advice is for informational purposes only. I think those past and present caregivers who have been, or are presently in the trenches, giving care, who have experienced caregiving can give some of the best answers, whether licensed in their field or not.

A new poster can choose the advice they want to follow, and leave the rest.

This is going to be one of the very best threads in a long time, imo.

Promise yourself to not let your own health go by the wayside.
Keep your appointments for physicals, health screening, dentist, eye doctor etc.
It's tempting, to blow off your own appointments when you feel like all you do is sit in one doctor's waiting room after another, but your health is paramount. You can't take care of someone else if you're sick yourself!

Know that cognitive decline can be a sneaky thing; for about a year, my brothers, my mom's doctor and I all thought that mom was "fine" although increasingly anxious about a lot of stuff, like far away storms. We had no idea that she'd had a stroke that had robbed her of a great deal of her reasoning ability.

If you think that your parent is "just" getting old and crotchety, anxious, more stubborn...get them a comprehensive cognitive assessment to find out exactly what you are dealing with. For us, it was a life saver.

Make a list of items that you could use some help with. When someone says "is there anything that I can help you with?" Whip out that list and ask them to do something specific to help you.

Would bringing a meal once a week or cleaning the kitchen be more helpful.

Tell people what you need. I know that I never want to just jump in for fear of causing offence but I am more than willing to do whatever they need, I just need to be told. I can't imagine that I am the only one that feels that way. So be specific and when someone asks to help, take it.

When you are doing the legal paperwork get a HIPAA release that specifically says that it has no expiration date. Also make sure that it states that it is intended to be valid in any jurisdiction that it is presented. Same verbiage for the DNR, living wills and any other documents that have end of life wishes. To many people think they are lawyers and will give you a hard time about these documents if you are out of the state they were created. This verbiage alleviates that fight.

The ones that you sign in a hospital or doctor's office have a 12 month expiration period. Having one that never expires is soooooooo much easier.