New Posters! Read this.

Ask the doctors questions! If you don't understand something, tell them! If you aren't capable of doing what they tell you that you will need to do, tell them! If you think something is wrong and they refuse to listen, insist on seeing someone else! Especially in a hospital setting! Don't let yourself get bullied into providing more care than that of which you're capable!

Know that in every hospital, there is a 'patient advocate" who you can contact if you arent getting what you need from the staff.

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.

Understand that if your parent goes to the hospital and is admitted, if they are there for "three midnights", they are entitled to Medicare-paid rehab.

Understand that you CAN refuse to take your parent home if you believe that it is an "unsafe discharge". Don't get bullied into picking them up.

The best "added value" that we got for my mom along the way was from geriatric psychiatrists. They seem to be the last specialty that actually looks at the whole body, mind and soul.

Psych medication for folks with cognitive decline and dementia is still in its infancy, but even though it is more of an art than a science, the right meds, whether anti-depressants, anti anxiety meds, anti psychotics....they can make a huge different in the ability for your demented parent to function day to day.

Don't underestimate how long people can live after they reach that point where they need care, temporarily moving someone into your home or moving into their home yourself might seem like a workable solution until you realize that your temporary commitment is stretching into years, for some of our posters even decades.

What I wish I had known?

First, about this site. Such great advice, understanding, and support can be found here!

Next, that the needs of the LO may start small but will only increase with time. It's insidious.

Before committing to caring for someone, know your own limits - physically, emotionally, financially, etc. Make sure your LO knows those limits from the get-go. Have Plan B in place (even if in theory) before you reach your limits.

Know that the better you do your job, the easier it is for family/friends to assume you've got it handled and fade away. Ask for specific help when needed.

If you are caring for someone, make sure you have POAs. There are too many stories on this site of one sibling doing the caretaking while another sibling has POA. The POA sibling controls the purse strings and may not put the needs of the LO first which can put the caretaking sibling in a precarious position.

Know that your time and effort are valuable. If you aren't being respected, it's OK to say so. If you need to take a break, then do it (no guilt if possible).

If you choose to care for someone, know that it will be hard at times. But, for myself, it's also something that has given me peace after my MIL died.

This. 

1. And before your loved one becomes incompetent, get durable powers of attorney in place.  Once they become incompetent, they cannot give a POA, you will have to go to court to get guardianship.   $$$.  

2.  Accept that your parents condition will only get worse.  You may be able to care for them today, but it will get worse.

3.  If your parents move in with you, do not expect any help from siblings, you cannot force them.  Even if they try to help, it will not be as much as they "offer".   Between their getting ill, the Covaid, whatever, they will not come as much as they say they will.

4.   Be aware that if your parents need Medicaid, it is confusing.  If they make gifts to you in the prior 5 years (less in some states), there can be a look back, a penalty period for which they do not get Medicaid.   If they have any money, you may need a certified eldercare attorney.  Not just any attorney, one with experience.

4.   Medicare will only pay for acute care, not long term care.  Medicaid is state by state, will pay for nursing homes (NH) in every state, but Assisted Living, Memory care or home health care is state by state and there may be a wait list.

5.  It may be easiest to get your parents into a good NH by being private pay first, and then when their money runs out, Medicaid.

6.  If either parent was a Veteran, the VA has a program for Veterans Aid and Attendance, for Vets without lower income and assets.  Worth investigating. 

If your loved on is admitted to the hospital take it upon yourself to write in very LARGE letters on the white board the following information:
"THIS PERSON HAS DEMENTIA, THEY CAN NOT ANSWER QUESTIONS RESPONSIBLY....DIRECT QUESTIONS TO..............."
Make sure this same information is clearly written in their medical chart and on the ID bracelet since they all ask ..what is your name, what is your birth-date before giving meds or drawing blood or taking them for a test.

DO NOT give up your own home and job in order to move in to your elderly loved ones home- with your new role being the caregiver...
Not unless you’ve got a nice sized “nest egg” stashed away.

TIme after time after time - we see the loved one needing to be moved into a care facility - and the elders home must be sold in order to pay for their care. You now are in an urgent need of finding a new place to live. But guess what? Because you gave up your job you don’t have enough money to pay for a new place to live.

In addition - giving up your job also means you are no longer paying into your social security fund - which will effect you directly by way of a smaller SS check once you hit retirement age.

It’s sounds ideal in the start. Mom only needs a bit of help and someone to live with her “just in case”. Moms house is paid for so the expenses are small - food and utilities, some incidentals and those can be covered with the elders SS check - and perhaps your own if your old enough - or maybe you are getting some disability money. Easy, right? Not after mom has that fall that renders her wheelchair bound and a full assist and you just can’t provide that level of care. It’s hard. Really, really hard. Never underestimate that. So, off mom goes to a facility.

Where does that leave you? Medicaid says sell the house. Siblings say sell the house. Even if no one sells the house - can you on your own pay all that it takes to keep a house? Cuz moms SS check is now going towards her care. It’s all on you.

Don’t say this won’t happen to you. We see it ALLLL the time.

Know that you cannot change anyone else's behaviors. You CAN change your own; that is really the only thing that you have control of.

Two entirely different thoughts:

First, it’s easy to lost sight that the person you’re caring for is still a person with valid wants, opinions, thoughts, and contributions no matter how small. In the midst of trying to plan for them, to figure out what’s best, don’t lose sight of the person who’s still there, even when it’s so hard to remember what once was.

Second, if and when you choose to use hospice services, know that they will provide all supplies and support you could possibly need, but the hands on care around the clock is on you to provide. Be prepared to do this with family, volunteers, hired help, whatever you need to piece together, but know it’s 24/7 and so very hard

My advice would be: Don't let feelings hide the truth! (I wish someone had told me that much earlier in life. It would have spared me a lot of pain and unrealistic expectations).

This includes letting your own feelings hide the truth AND letting the feelings of OTHERS hide the truth.

For the spouse of a LO with dementia, hold hands, reminisce, listen to music.

Resolve any contentious issues that haven't been addressed. Most people have regrets because of what they didn't do rather than what they've done.

Understand that there is no playbook or manual for being a caregiver. It's all on the job training.

Seek help early. The time will come when you can no longer be the sole caregiver.

Maintain the dignity of those living with dementia. Allow them to retain a feeling of worth and independence as long as possible.

Be aware that if your loved one is sent from a hospital to a nursing home for "rehab" purposes, you will be told that they will get 120 days of rehab. Most likely, it will be nowhere near that - it will end up being much less. From the moment rehab starts, family/friend/POA needs to be advocating for the patient as to where they will go when rehab ends. You get 48 hrs notice that rehab is about to end - and you're usually partway through that 48 hours before even seeing the written notification. The next care step needs to already be in place. And, if you feel the person cannot succeed at home, PLEASE do not attempt to take them home.

If the situation doesn't work for EVERYONE it isn't working and needs to change.

The elder IS NOT the only one that matters.

DO NOT let a demented mind run the show.

You are no longer the child that has to do whatever you are told by your parents. You are an adult and you have choices in the situation.

It’s not your fault!! I wish someone had told me this when I was little. My mother’s mental illness is NOT my fault and never was. Period.

We use lots of acronyms. IL is not, usually, Illinois, it is independent living. AL is not Alabama, it is assisted living. Many of the commonly used acronyms are here:

https://www.agingcare.com/articles/common-caregiving-abbreviations-and-acronyms-435589.htm

Don't do anything with the expectation of future compensation (you will get the house, get paid from the estate, this or that will be left to you, etc.). Promises are often made and not put into wills, houses have to be sold for the elder's care, etc.

Get paid for caregiving while you are doing it, with a well-written agreement in case the parent could eventually apply to Medicaid.

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.

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.

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.

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!

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.

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!

"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.

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.

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.

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.

@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?

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.