New Posters! Read this.

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.

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

@"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).

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).

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.

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!

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

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.

@ "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! :)

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.

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.

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...😇

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.

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.

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

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!!

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.

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”.

I (67yrs old) was BORN to care for my mom (92yrs old). Because if it weren't for her? I ain't born.

I am feeling kindred spirits here and it’s comforting. 84 yr old mother moved in in May. Hubby and I said yes due to covid. She was being released from the hospital, survived covid and didn’t want to rehab in a nursing home nor did she want to return home. I was under the impression it was temporary. I moved her out of her elderly housing, suggested a storage facility and she said no. 2 months go by - I asked her if it was her intention to live with me till the day she dies with me being her sole caretaker and she said yes. That was in July. She came in saying I won’t be any work, just do your thing, don’t worry about me, live your life, I can take care of myself...none of that was true..now I’m looking for on-line counseling. We have had a few arguments. She’s paying me monthly and I made it clear to her that I didn’t want her money. I see it as a way she washes away and justifies her actions. I even leave her uncashed check where she sees it, uncashed. I told her it would be considered income that I’ll have to pay taxes on. Or, money that will be counted in a 5 year look back if she goes into a nursing home. The list of stuff I have had to deal with is long but this site is showing me I’m not the only one with these issues. I told her she needs to return to elderly housing or move her tenant out of her condo and live in it. I had no intention to being a full time care giver. I have fibromyalgia and hubby is not in the best situation. I was in the process of downsizing and now can’t afford to accommodate her. So my retirement life with my husband is on hold. I prayed when she was so sick with covid that God give me another chance to have a relationship with my mother. I can’t make it happen. She charged in here with her commands and demands.....get me, give me lack of please. So, ok, before I work myself up into a state of vomiting. I am looking for a counselor, on line. I need guidance on talking with her. Don’t want to get angry again but don’t want to feel used and abused. I am the only daughter with a dead beat brother who can’t even care for himself. But she has the means to take care of herself. My father set her up quite nicely for this. She just wants to be cared for and sit in my chair and read. I stopped fixing her breakfast and lunch as she regained strength. This week I didn’t do her laundry, showed her how my machine works. I also have a suspicion she’s hiding something financially from me. We were joking I could raise her rent as high as the elderly housing is and she said I can’t do that because then I won’t have the money to save...she stopped and looked at me put her hand over her mouth and walked away. Am I being used for someone else’s financial gain? I immediately deposited the checks and am holding the funds. I want answers. Big sigh. Counseling

jacobsonbob says:

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

I can't speak for Yahoo as I don't have a current account with them AND recently they have turned off comments. Although it was sometimes good to read some posts, not so much others, I can see why they have done it. Too many of the posts were just nasty and really did not lend to the discussion. Anyway, I don't know if their comments had the ability to be edited, BUT I can say that YouTube does allow edits. I have edited my comments multiple times, to add more, to make corrections, whatever. Just now I went back to one comment posted 3 weeks ago and the edit capability was still functional (I added another ! and SAVE became available so I clicked that - your username line will then show (edited).)

How it works (there is a delete option as well - haven't checked that out here, but maybe if you edit and delete everything?):

To the right of your YouTube comment there are 3 dots, stacked up/down, like the Google dots on the upper right of the browser that opens the menu (go figure, Google owns YouTube!!!) If you left-click the dots, the Edit and Delete options are presented. Select Edit, make changes, SAVE is activated and then you save or cancel!

I have at times come back to posts here later and have been able to still edit. Just today I posted and came back MUCH later - the edit "button" was still there, so I fixed a grammar booboo I missed earlier... The edit capability on that comment is gone now, but I'm fairly certain it was much longer that 30 minutes later when I made the edit.

But, mainly I responded so you and others know how to edit and/or delete YouTube comments!

Reading some posts this morning reminds me of a pet peeve that I have. There are some that write very long posts without separating paragraphs or using a space between them. Some do not use any punctuation. These posts I will often skip completely because they are too hard to read.

Even phones have the ability to add a blank line between paragraphs. Please use punctuation and paragraphs and your posts will be read by more people.

Another pet peeve is those that use all caps when trying to get a point across. There is no need to yell unless just a few words. People listen and understand easier when they are not being yelled at.

Dexpending upon your location, your local Area Agency on Aging may be a real gold mine of resources. You can find them on your County or City's website.

As an example, mine offers case management services, "needs assessments", knows where the local Adult Day Cares are and maintains contacts with the local facilities like ALs and NHs.

Certainly, they are the place to start!

If you get inveigled into on-site caregiving, giving up your job, derailing your life in order to be a caregiver to your parent, you should be paid by your parent (and there needs to be a legal caregiving contract in place) and you need to have adequate back up and respite.

Don't get into a situation where you are the full time caregiver and need to beg your sibling who has POA for approval for payment, respite or reimbursement for supplies.

Understand Medicaid regs BEFORE you jump into caring for your parent and don't be enticed by "oh, you'll get the house".

To all new posters. You have the right to say no to a LO. You can say no and NOT feel guilty! It took me YEARS to figure this one out. I had to tell my mother NO we are not taking you out to dinner for your 96 year old birthday which is in 2 weeks.My son and I told her we would bring food and a cake to her and do a zoom call with my other son, my brother, my niece , etc. I don’t even go to a restaurant unless it’s for takeout. Her reply? “I’ll go out by myself.” I don’t feel guilty and I’m finally not giving in to her. If she’s home, she’s home. If she’s not, she’s not. I’m not wasting these next 2 weeks fretting over it.

Remember to say NO and don’t feel guilty!

I'd like to think that this is a supportive site. If you are bullied, or if you get abusive messages, please scroll to the bottom of the page to the "contact" email and report what has happened.

There should be ZERO tolerance for abuse here.

https://www.agingcare.com/aboutus

Excellent advice about not "promising" a parent to keep them out of a nursing home. I've known several senior citizens who beg their children to make such a promise (and, knowing what I know about some nursing homes, I can understand why). Sometimes the children end up truly unable to keep this promise and carry an unbearable burden of debt because of their "broken" promise. The answer suggested above is a good one.
The fear of ABANDONMENT is the real core of this issue. At 80 yrs. old and still living independently, I know this fear all too well. The day may come when I am less than agreeable, less than enjoyable to be around, less attentive to my previous standards of personal hygiene. If this happens, please understand that I don't really like being this way. I just don't feel good most of the time.
But don't feel guilty if you must place me in the care of others! Look for the cleanest, kindest setting you can find. But most important, don't desert me. Let me know that even if I'm not at my previous best, maybe not even near it, you still care.

In my previous post I used the word "debt" when I meant "GUILT"
Hopefully debt is not a factor for family. (I recognize too that some family relationships, many spoken of here, plagued by lingering rage, are too dysfunctional to even produce guilt feelings. Very sad.)

Posters - keep posts short and to the point. Writing a book for a comment is not always necessary. You may lose people when you write lengthy posts.

Bridger: Agreed.