New Posters! Read this.

I want to address the comfort comment of “Doing the best you can”. I mean absolutely no disregard or disrespect to those who have said it - used it as a means of providing comfort to others. I’ve said it myself - many times.

Most of us go into the position of caregiver to an elderly loved one with the very best intentions. Some, have made the promise to the elder or the dying spouse of the elder that we will care for them and never put them in a nursing home.

But, fact of the matter is - many of us are ill equipped to deal with the often increasing needs and complications that come with an ailing elder - be those complications physical and/or mental. Dementia.

But - we “do the best we can”. We try to be all things - all the time. And, the plain truth of the matter is - “the best we can“, is sometimes simply not good enough.

It’s important to realize that - and with no shame. How many of us are doctors or nurses? And even if you are - are you also a nutritionist? A geriatric psychologist? A physical therapist? An occupational therapist? A speech therapist? Do you have the physical strength to lift a 100+ pound person day after day - to dress them, change their Depends, shower them, pick them up off the floor? Is your home equipped with ramps, stair lifts, grab bars? Is theirs? Do you have unlimited time to take them to the doctors, the store, on recreational activities? Are you available to talk to them throughout the entire day? The patience to answer the same question over and over and over again throughout that same day? To plan and make special and separate meals that might require pureeing? To then feed them? Can you go with little to no sleep for days and nights at a time? Enough money stashed away for your retirement since this is 24/7 and you’re not able to hold a job? Is your own spouse and/or your children understand why you have no time or energy for them? The list goes on...

Maybe your elder only needs some of this. Or maybe you are equipped to do a lot of this. Maybe you made a promise. But - day after day after day? Perhaps, stretching on into year after year?

Being a caregiver is hard work. Really hard. There is no shame in admitting that “the best you can” isn’t cutting it. That you need help.

Please know that recognizing your own limitations and asking for help - maybe breaking a promise - does not make you a failure. It does not make you a bad person.

Sometimes admitting you can’t do it and ASKING FOR HELP - that, that is really what it means to “do the best you can”.

Elaine, I often tell folks that it is NOT the folks who are "crazy" who need therapy, it's the folks who live with them who need therapeutic help.

I was finally told this by a therapist, because my ex kept telling me that clearly, all of the issues in our marriage were MY fault, because the docs threw him out of therapy and kept me.

"That's because you have the flexibility and capacity to change; he is so rigid that any change will break him into a thousand tiny pieces".

It was quite a stunning revelation for me.

Here is another one for new posters. If someone mentions you should see a therapist, it does NOT mean we think you are CRAZY!!! It means we ourselves have been to therapy and we feel it has HELPED US TREMENDOUSLY!! We encourage it because we want you to feel well again. Please don’t feel offended if someone recommends it. It only means we tried it and it helped us to feel better and we want you to feel better too!!

There's a time limit on editing, I think it's 30 minutes.

Okay, I've found that even after closing this string and going back to the original page on my browser (the one that lists the questions and topics for the day after clicking on the AgingCare email in the inbox), I was STILL able to edit. However, from what I've seen, any further editing isn't possible when getting back to the string after closing and reopening the browser.

Here's another "administrative" suggestion: When you type a comment or a response to a comment and then discover you've made a mistake, a typographical error, or simply want to change something you've typed, you can click on the "Edit" button (in the upper right-hand corner of the message after posting) to make these changes after you've already posted, and at least as long as that particular subject is still on your screen. It's a good idea to see if your revised comment has been posted so you can avoid posting what's still in the editing screen because otherwise it's likely to post the same comment more than once (which is no "crime"!). However, the "Edit" button will still appear after posting, so it should be ignored if you are happy with it.

I'm not certain if this is still true after you've gone to another message within AgingCare, such as clicking on a different subject at the bottom of the page without closing the website, but this may be a possibility.

However, this is GREATLY appreciated, as websites such as Yahoo and YouTube don't enable any editing after a comment has been posted.

Lie??!! I would NEVER do such a thing!!! Oh wait, yeah I would.

LOL Rainmom, I so would have done exactly what you said, but mom was sitting right across from me so it was easy enough to put her on the phone.

That said, had I known I wasn't on the "list" to get information, I would have fixed that a long time ago...I just wanted to pass on what little knowledge I have...😇

Piggybacking on notgoodenough’s LTC Insurance advice - well, kind of...

Sometimes it’s okay to lie.

There is the catagory of “Therapeutic Fiblet”. These are the sometimes small lies and sometimes bigger lies that we have to tell our aged loved ones that are for their own good. Things like “The doctor says you need to stay here in rehab a little longer - to work on getting stronger” or “A main pipe broke at your house causing a lot of damage and mold - we need to get that all repaired before it’s safe for you...” - when the reality is - they are never gonna be able to live in their own home again.

Then there are the lies one tells businesses and bureaucracies - the ones that almost seem to be going out of their way - with their rules - to make everything harder than it needs to be. When things - EVERYTHING - is already hard enough...
Moms in rehab and between the UTI and the morphine - she’s just nutz. You’re trying to get information about her LTC policy but the dweeb-bot on the phone says they can’t release any information without moms consent. Could you put mom on the phone? Yeah, right - that’ll work - between being nutz and nearly deaf (and only God knows what she’s done with her hearing aids).

So, what’s an honest but exhausted and frustrated caregiving daughter to do? You say sweetly “Of course. Just let me get her”. Put the phone down - call out “Mom, they need to talk to you”, rustle and rumple the phone around for a minute - then you pick it back up and say “Hello. This is Mrs Policy Holder...”

... Yep. Sometimes - not all the time. Not even a lot of the time. Just just sometimes - It’s okay to lie.

Piggybacking on Beekee's LTC policy advice...if your LO has police, make sure you are on record to be able to get information about the policy. I just found this out with my mom's Genworth policy; while she had me on record to be notified if her policy was ever in danger of lapsing due to non-payment, I wasn't on file to be able to get information about the policy terms. Fortunately, when I called they took a verbal consent from my mom over the phone, but if your LO isn't able to do that, you might have a problem getting the info you need.

@ "cwillie,"
Thanks for letting me know they show up in the "news feed" - I did not know that so I tried it and there just happened to be a private message for me. I've only been on this site for a month so I'm still trying to learn how to navigate around it! :)

@ "elaine1962,"
I wasn't aware of them being in the email notifications in very fine print either. I'll have to look there next time but, I agree the profile and news feed is much easier. Thanks for helping me get the message out too! :)

Always check your profile!! You probably have messaged. I know I do. I only get notified once in awhile in my email notifications in very fine print. I barely notice it. So now I just check my profile regularly. That’s where all your messages are. Private and public. *Messages* not messaged.

Messages should show up in your news feed, at least mine do.

To: "Newbies" or "Oldies but Goodies,"

Even though this isn't directly related to caregiving in and of itself, I didn't know where else to make this comment.

When you come to the AgingCare site, it's always a good idea to go to your profile page periodically to see if you have been sent any "messages." I know occasionally, I will send someone a "message" that others may see or a "private message" that others can't see. I've had several say they didn't even know they had messages sent to them. One had a lot just sitting there without ever being read. Just a thought I wanted to throw out there!

Your parents' care is paid for out of THEIR savings, SS and assets. Not yours.

Do not front money for your parents' care expecting that you will "get it back" in the form of an inheritance. For most of us, every cent our parents saved, the price that their home fetches and their monthly Social Security check will be spent on their care (NH care where I live is about 11K per MONTH) and in the end, parent may well end up on Medicaid.

And please, make sure that you don't think that moving in with your elderly parent and essentially living off their SS is a good idea. In the end, as another poster pointed out, you will end up unemployed, homeless and unmoored when your parent dies.

3. Trust Your Gut.

If your relative is just not right - speak up. Behind the behaviour change may be a medical reason (undx disease, undx dementia, UTI, stroke, change of meds etc).

Gut feelings may pick up other serious issues (unsafe behaviours, overdose, addictions, elder abuse, financial abuse & more).

@"AllHands,"

I am pretty much echoing what "BarbBrooklyn" said in her comment in response to your question on "...elaborating on the issues making it this necessary" when it comes to discharge after a hospital/rehab stay.

When my mom was taken to ER from nearly dying of severe dehydration and getting the COVID virus back in April, it was the first time she had been hospitalized since being in an AL facility. During her four-day hospital stay, the hospital social worker contacted me and asked what my plan was once she was released. Since I felt like there was negligence on the part of her AL facility, there was no way I was sending her back there if I could help it which I explained to her. Thankfully, the doctors my mom had were very good and helpful and said they would be sending her to a physical therapy rehab facility (which would buy us some time). Since we were just a little over a month into the virus situation, there were only three rehab facilities who were even willing to take a COVID patient in. They gave me the names, I got on the internet right away to see what they looked like, how far away they would be from us and what kind of reviews they had. I kept hoping for the first one on the list and thankfully, that's the one who had a room available and would take a COVID patient.

Once she was there, the "Discharge Case Manager" already was asking me where she would be going upon her release. There were no places at that time who would take her. My husband found a placement agent that we were in contact with for over a week and all she could find was a "group home" an hour and a half away round trip but, they weren't licensed yet. In my heart I knew it would not work for my mom and I did not feel at peace with it which meant I would have to send her back to her AL facility. Every four days the manager would call and want to know if we were "actively" looking because she didn't know how long she could justify to Medicare keeping her since my mom wasn't making any progress and was being combative with the therapists. She held a meeting every Tuesday to go over all the patient's progress reports and then called us asking the same question. She ended up giving us two other group homes that were closer. We drove by them and I said "no way." Then she gave us another name of a placement agent. We couldn't work with her until we dissolved the written agreement we had with the other one. But, the new one helped us in spite of it. Finally, she gave us three IL/AL facilities with a memory care unit (she needed more care now). The one I really wanted, changed their mind, one of the other ones had too many citations leaving just one more option - they had not had any COVID cases within the facility. The location was great and familiar to us but, they only had four apartments left and only two of them were ones we could afford and private, one-person apartments. All we were waiting on was a "negative" test result but, I put a deposit down on the one room that was just right for her just to "hold it." Everything had to fall into place just right to make it happen and thankfully, it did. I had her previous facility breathing down my neck wondering when my mom would be returning (I didn't and couldn't tell them we were trying to find a new place because they still had all her belongings and I didn't want to burn any bridges). So thankfully, the rehab facility discharge manager kept my mom almost the entire length of time that Medicare would allow, my mom's test came back negative and she now was qualified for hospice care.

So like "Barb..." I had no idea about any of this stuff and it was extremely stressful for my husband and I (he ended up having to take a medical leave of absence from his job of 27 years so he could help me to help my mom).

You can say:
"No, I cannot possibly do that."

Dyingdad, just ignore anyone that says maybe you don't belong here.

Some people believe that honesty without compassion is just great and to have said that makes me think that she herself is having a hard time. I hope that is why.

I am sorry that you are going through a serious physical illness while dealing with the recent loss of your dad and the sudden drop of your difficult mom into your life.

There really are people here that care.

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?

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!

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.

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

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.

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.

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.

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.

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.

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.

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

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"!