How do I be nice every darned day?
Hi fellow elder care people,
I sure could use some advice, please?
My elderly aunt, 70, has been mentally handicapped since birth, but functioned enough to live alone all her life. She's hard of hearing since her 40s and won't wear an amplifier or a hearing aid. On 2/13 she fell out of the shower, didn't call for help for 16 hours, and when I got there, bone was poking through her ankle AND her wrist was purple AND she had healing bruises on her cheeks, hips and bridge of her nose. There was almost no food in her house, and apparently she's been forgetting her own items at the laundromat she insists on going to, because all the clothing I've bought her is gone, so are all the nice linens, most of her towels, etc. Now I'm in charge of finding an assisted living space once she's out of skilled nursing. She no longer communicates.
My biological father, 80, and his wife, 80, are declining rapidly. Last week my stepmother fell (as she does daily) but this time she fractured one vertebrae and cracked three ribs. *EXTREME* osteoporosis. My father can barely walk, and she is bent over and shuffles in a walker. They bicker all day, every day.
My biological mother, 78, is slipping mentally so rapidly. Her husband is scrambling to cover up her issues and take on everything. He's had 2 strokes already and I'm worried about his stress level.
Today, my biological father cried tears in my car when I was driving him to his 7th dentist's appointment in 30 days. He said that if it comes to putting his wife in assisted living, he'll kill her and himself. (He won't, he's a big blowhard). But he is in deep despair all the time and SO negative.
Meanwhile, I'm running a business amid a pandemic; I have a very demanding career; I am working 60+ hour weeks to make up for the losses of time and money from Covid+ elder care. There will be no inheritance from any of them, so my retirement is moving further away as I care for them all and lose money in the process. I am trying to keep as much of my drama with them as I can from my relationship because my bf definitely "doesn't want to hear it".
I'm exhausted! When any of them call me, it's always 11 minutes before the biggest conference call of the day. My stepmom especially will call 24/7 and ask me, "Honey, where did I put my spare thing?" "What thing?" "You know, the thing I used to use for the eggs." No idea. Or she will panic and leave me five voicemails because she thinks they are "out of sauerkraut". There are now 7 jars in the pantry. I counted this morning.
My biological mother cries because she "loves me so much" whenever she sees me, and asks me questions that are completely loony. She forgets everything these days and only wants to play this repetitive, stupid card game 6-8 hours a day with my dad and me. Ugh!
I feel like I'm falling apart. I've become snappish. I care about them all, but I don't want to care for any of them anymore. I meditate every day. I try to take time for myself, for reading, for relaxing for at least an hour every day. PLEASE help me be less short-tempered, more loving to them! I'm open to every suggestion.
PS = My biological dad told me that he blames himself because my grandfather was so vile to him that he had to go outside for a smoke when grandpa was in the hospital and sure enough, he died during the 10 minutes my dad was outside! I don't want to be mean, but I'm starting to dread all my relatives!!
I'm sorry. I can't imagine such a thing being in any way possible.
Is there some limit in your mind. Would seven be OK? Would 9?
It is time for placement for these seniors who cannot manage on their own unless you want to manage your own private nursing home and move them all in. At least then the State would pay you for their care.
I really don't have an answer at all for you. You will have to set some limits or you will eventually buckle under all this, become very ill and totally non-functioning to by then you will likely also be alone. Then what for these FIVE people?
Sorry, but there is no answer but to downsize all of this. It isn't doable.
WHY are you paying for their care? They ALL must have some amount of income, SS, pensions, something. THAT should be paying for them.
Medicaid for them if they don't have Medicare. Look into NH's where you maybe can get a group rate! (Kind of kidding, but not really).....
No one person can maintain this level of care w/o going bonkers. You're starting to see this. Even with all of these folks in some kind of care, you will still be hopping like a bunny trying to get all their care coordinated and organized.
An entire NH staff couldn't effectively do what you're doing.
If you don't downsize, and do it soon--YOU will be the one needing help and who will step up to help you?
Auntie recognizes me, but is unwilling/unable to communicate anymore, and doesn't seem to give a d***. Her brain seems COMPLETELY gone, so she'll soon be in Assisted Living and I will visit...when/if I can.
Biological dad and his wife are in DIRE need of additional care. The county is already giving them a home aide 6 hours/week but they make her do stupid things and don't get her to do what they need. For example, she rearranges furniture weekly, even though that means she doesn't get to cook or do laundry. In June, it will be one year since I took over their miserable lives and moved them to my state. They've declined enormously since then. I am preparing to take actions to put them in a government-funded assisted living, since they are indigent. It's tragic, but all that they can do. They squandered all their money with terrible, reckless financial decisions all their lives, right up until I stepped in.
I am so overwhelmed, sad and stressed out. My instinct is to run away to my real home (in California) and leave them all here in Illinois to rot. That's terrible, but I think about running away from them all, including the boyfriend, every day!
They either need a professional helping them, or placement. This is too much for one person.
Your biological father's father did not WANT him to be in the room when he passed away, which is why he chose that specific 10 minute period to do so while your dad was outside smoking. It was not a 'coincidence' it happened that way. Trying to convince your father of such a thing may be another story entirely, however.
Your biological father will not 'kill himself and his wife' if he has to place his wife in AL, in fact, he can go WITH her into AL and they can live together there in a nice apartment and forget about all the stress they're currently dealing with in a house. You can get him some brochures to look over and make up his mind about, otherwise, you don't have time to listen to negativity all the time and/or to drive him to endless dentist appointments, either. You have a job that's physically killing you and you're already spread too thin as it is, so please dad, give me a break already. Assisted Living is NOT the hellhole these elders seem to think it is, and we 'children' don't have to listen to the nonsensical threats and guilt they heap on us if faced with such a fate. There is no other choice, dad, I can't do this anymore. Period.
Your biological mother is suffering from dementia if she wants to play a card game for 6-8 hrs a day and asks you gibberish-like questions. She'll need an ALF with a Memory Care wing which she can segue into eventually, when the time comes.
When any of them call you, you have exactly 5 minutes to spend on the phone b/c you have an Urgent Meeting to attend in exactly 5 minutes from whatever time it is they called, and that's that. Let the rest of the calls, if not ALL of them, go directly to voice mail. Pick & choose the ones you want to return, and apply the 5 minute rule to each.
You have to set down boundaries with all of these people or YOU will wind up in the hospital from stress related disease. You can wind up dying before any one of them, in reality, b/c dementia can last an awfully long time before it kills an elder.
As far as your b/f goes, why exactly does he not want to hear about YOUR problems? What kind of 'relationship' is it that he only wants to deal with happy times and not help his loved one through bad times and stressful times? As if you wouldn't be there for HIM should one of his family members need him? It may be time to have a Come to Jesus Meeting with this b/f who needs to take YOUR needs into consideration here! You deserve that, my friend. You're worth it.
Sit down & decide how you're going to handle each one of these elders, and how much time & effort you're willing to devote to their issues. There comes a time when elders need more help than is humanly possible for ONE person *YOU* to give to them. That's when the decision is made to go into managed care, or fend for themselves. It's not that you don't care.....it's that you only have two hands and 24 hours in each day, and neither is enough.
Wishing you the best of luck coming up with a plan for YOUR sanity!
Sorry that you are still struggling with your ongoing issues with your family.
You certainly have your hands full.
You most likely have an idea what the answers will be to your question. While I think it is good to be completely honest, I don’t wish to be cruel to you and I certainly don’t want to kick you when you’re down.
Plus, I remember when I was feeling overwhelmed. It’s hard to process everything all at once.
Many of us will remember your situation. I do.
I think it would be best for you to ask yourself this question. What do you really want? Do you want it enough to make some waves?
You generously bought your biological dad and your stepmom a condo, am I correct?
I am sorry that your dad had a rough time in the past. You did too. He abandoned you and your mom.
Your dad wasn’t meant to be with his dad when he died. It happens all the time. As soon as a person steps out of the room, the person dies.
You definitely have a huge heart and more patience than a lot of people would.
I’m not so sure if that should be considered a positive or a negative in this case.
Your mom and your stepdad are struggling too. You can’t fix all of their issues.
Certainly, you must realize that ALL of your parents are long overdue for professional care from a staff at a facility.
You’re working your tail off. You are exhausted!
Your boyfriend is seeing a clearer picture of things from an objective viewpoint.
Of course, he doesn’t want either of you in the middle of this situation.
You’re way too close to it to see what’s truly happening.
You are asking about ‘not snapping’ at others.
Personally, I think you should get VERY upset about your situation and look into facility care for ALL of them.
You can visit them. You can be their advocate.
You can spend more time with the man in your life.
When I was too close to my caregiver situation to be objective, I wore myself out too.
I ended up in therapy and on this forum. Have you considered therapy?
I had to step away from it all in order to see the mayhem that it truly was.
Please consider stepping away. Start looking at facilities now!
Do not put this off any longer for their safety and your peace of mind.
Is the condo in your name? Sell it or rent it. Put the money towards their care.
Five is ABSOLUTELY out of the question. Sometimes, with family, we don’t see how crazy making our situation is, until we see things from the outside in.
We hear you, and support you in finding a solution that will be good for YOU, as well as your family members.
I feel like I'm trying to save 5 drowning people and I'm not a good swimmer myself. : (
You say in your reply that you are ashamed, because your Loved Ones are nice people. I’m sure they ARE.
It’s the sheer VOLUME of caregiving that is too much. Not whether your family is nice or not.
Also, you say that you don’t want to ABANDON them. We are not saying that you should. You can slowly change the WAY you caretake.
Keep reading on this site. We all learn so much from each other. :-)
I’m not really surprised that up to now, “BF definitely doesn't want to hear it". This sounds unsupportive, but it is also understandable if you have been venting but not really planning to change. If you make a clear decision that this has all got to stop, you might find that BF is willing to help you work out how to do it. That might help him, you and the people who are killing you by inches now. Worth a try?
Seriously? And then my dad called (all of these during the work day) to tell me, "You know that German rye bread you bought me a few months ago? I want more of that. That's the best one." (He must have finally defrosted it - it would have been literally a few hours fresh when I took it to him.)
"What's the brand name, Dad?"
He calls out to my stepmom, "What's the brand name on that rye bread I like, Rita?"
She shouts back that she doesn't know.
So he says irritably, "Well, where did you put the wrapper?"
"In the trash, probably." Remember, this woman has a fractured vertebrae and 2 cracked ribs.
"Well, can't you just get it out? Wendy needs to know what brand it was."
Me shaking my head. If you're going to take bakery-fresh bread and throw it in the FREEZER with only the wrapper in came in, and then eat it two months later, and then tell me you want more of it, then it's on you, Buddy. Tough luck.
I have a nephew that has been on Social Security Disability since he has been an adult. He lives on his own using a voucher for his rent. With SSD and a government annuity he does OK. But there is a 40 yr difference in our ages. Him 31, me 71. If he gets to the point he can no longer do for himself, the State will need to take over his care.
You may have to go this way for your Aunt. Does she have money for an AL? Medicaid, depending on the state, may not pay for an AL.
Now the steps? Do they have children of their own? Then they should be finding care for their parent. You need to work together. Seeing a lawyer about how assets can be split, if needed, for their care. From what I read, there is no "you" who can care for anyone. And you need to set boundries. My daughter was just talking the other day about how I wouldn't allow them to call my work unless an emergency. My DH was not allowed to receive calls unless an emergency.
I am just overwhelmed reading your post. You cannot be everything to everybody. The two sets of parents are going to need to find resources to help them. Start with Office of Aging for everyone. Making them aware that you are not in the position to help anyone.
He said, "Because there's nothing I can do to help, so I'm not the one you should be telling. Plus, I don't understand why you don't just stop doing things for all of them. You owe them nothing! None of them have done anything for you in your whole life!" (Actually, that's rather true!)
So I stopped talking but then he randomly said, "There's got to be a social worker or someone you can call. Talk to them about this, not me."
I DID!!! I remembered that my biological dad and his wife have a state-assigned social worker. I called her and AMAZING!!! She's assigning them an extra few hours of care; she's given me something called "respite", which is when the state allows short term extra care while the caregiver is away (I'm escaping for 10 days next week, because it's killing me!), and she is helping me bring in a new needs assessor. OMG!!!!
So it will maybe work out! I'm sure there will be endless dramas while I'm away, because they always all get much more needy when "Mommy" is out of daily touch, but I'm SO excited to think I can leave without enormous guilt now. WOO HOOOO!!!!
toss the ball and go through the months, or season, or holidays, types of cheeses, etc. get their brain involved too.
breathe, take it easy, and toss a dime store princess vinyl inflatable ball to them. "here, Catch!"
good luck
God bless you.
On a typical working day, I also see between four and eight people in need of similar types of support. I absolutely love my job, I couldn't be happier than when I'm at work. I skip to my car at a quarter past six in the morning.
But although I "love" all my clients - I do, all of them, in all their guises! - I don't love them as you do your family members. I'm not accessible to them at all hours of the day and night. I'm not expected to solve their entire lives. And, crucially, I'm not also trying to hold down my real job at the same time.
If you want to stay in this for the long haul, you are going to have to delegate some of the fantastic support you're giving this people or you will eventually break. It's a time and boundaries issue. You're already doing a lot about it, with your time set aside and your meditation, but can you make your "safe space" a bit bigger? Do you have any potential allies here?
CHECK OUT READERS DIGEST ABOUT DENTISTS... ESPECIALLY WITH GERIATRIC PATIENTS.. It is truly horrible... My LO was an unexpected victim of this.... When she cried and TOLD ME HER MOUTH WAS FALLING APART...
NOOOOOO... I took her to my dentist.... and YOU NEED TO DO THIS WITH YOUR LO...
Just to make sure nothing fishy is going in that mouth that doesn't need to be going on.... What is dentist doing? Putting venures in the molars of her back teeth like my LO's dentist was doing to my lo?
spend the extra dollars and save your LO from unnecessary dental procedures, if possible...get a second opinion...honestly... If in doubt look up Readers Digest article about bad dentists....
Do not be a victim..especially with geriatrics... :( trust me, it's no picnic..
Start looking now... get her a close to you a possible so it is quicker commute.
Plus, if she is only allowed a certain amount of days in this skilled nursing home,, depending where in the world yuou live, you may need to pay out of pocket more finanically if you do not find a spot for her sooner.
My aunt was in a facility after falling... she was there about a month or two... and when the day came, they gave me papers telling me they will charge her directly since medicare was up... .I handed papers showing them her new facility... That staff member was surprised..."Huh? you found a place already?"
Yes, we will be leaving tomorrow...
that person did not know what to think...
so, start scouting now for a place for aunt... it will be easier if you do, and get her as close to your home as possible... My friend listened to me and got her parents within a 10 minute drive..thankfully.... she is now the sole caretaker of them and it helps to have your Loved Ones As Close to you as you can...
This is not right.. get a second opinion... honestly... why 7 appointments? Is dentist recently out of school, or getting ready to retire?... it's not right... please check this out.
Seriously, I feel like this every day--and my situation isn't as bad as yours. I've been working 24/7 as a journalist covering COVID for a year now. My dad died from COVID in September and I'm POA for my mom. Everything I try to do to free up money for her care is a disaster. Know you're not alone.
Try to look at it like this: You are providing enormous care to each individual as well as working more than full-time and trying to keep your own relationship alive. That's enough for five people let alone one. Your own health/sanity will eventually go and then what? All of these people wouldn't have a prayer of getting care. Your aunt could lie on the floor for days and starve. Your other relatives could have equal disasters. At least getting them all into care gives you a prayer of continuing to see them regularly and do nice little extras for them, as well as advocate for them which would be your most important role.
I hope that you can make this work one elder (or two for couples) at a time. You can't keep this up. No one could. This is an incredibly supportive forum, so keep coming back here for more support.
Sending a huge amount of empathy and a lot of caregiver hugs.
Your situation is really unusually tough.
You are doing all the right things. Meditation after a 60-hour work week? Good idea.
Here are a few more ideas:
Know that you are not alone. You are part of a great army of caregivers world wide.
Lower the bar. You are doing something almost impossible and you are doing it. That's huge. If you get snappish here and there, so what? (They probably don't remember it. And even if they did, reality is reality.)
Get and make use of as much help as you can. Getting help made such a big difference in my mental outlook--I couldn't believe it. I am lighter-hearted.
Detach with love. Take step back. You love them--that doesn't make you Mother Theresa (who BTW took a six month vacation every year.) Things do not have to be perfect. They have to suffice.
The point of caregiving is that the loved one is well cared for. No where does it say you have to do it all yourself. The caregiver helping me with my husband is nicer to him and more patient with him than I am. I have learned that getting him that kind of help was an act of love on my part. I could not be "that saint" any longer.
OK, goodluck!
Please do not allow these emotionally needy folks ruin your life.
You also don't have to be nice all the time. To help.refrain from lashing out at these people who need so much of your attention, find a friend or keep venting on this forum to whom you can rant and rave and say all the things you are trying not to say to the people driving you nuts! We feel guilty about "being mad at" someone who is sick or dying, but sometimes they and their behaviors DO make us mad, and it helps a LOT to say so "outloud" or in writing.
If all this is true, my heart goes out to you!
no one person should have to shoulder all ..
You need to get help and quickly. I would start with calling your pcp and enlist social workers. This is way beyond what any one human being should be required to be responsible for.
good luck
PS - WHY would anyone make this crap up? I wish it was a lie!
No one can make you be nice, and I think you know that. You are experiencing caregiver burnout and compassion fatigue. The best nurses and doctors experience that as well so you are in good company.
Would meeting with a social worker who can help you see a way to deal with their care and your need to cut back
possible?
Many times I had to block my dad's number or let him go to my voicemail so I could have quiet time and compartmentalizations my life. You can’t be "on call" all the time.
In life guard training you are taught to protect yourself first, you can’t save a drowning person if you are going under yourself! The mantra is Throw, Tow, Go.
Throw something they can hold onto.
Tow them using a rope, pole, or even clothing.
Go as the last resort, using techniques to prevent them from pulling you down with them as you try rescue them.
Throw - get some help, Geriactric Care Manager, Social Worker, there are lots or resources.
Tow - be involved but put yourself first, you can’t help them if you are ill.
Go -as the last resort if you can’t find someone else to do it.
From my own experience you need to set some boundaries. 1-Only run errands one day a week, or find someone local to do it. Just say no, sauerkraut does not constitute an emergency.
2-DO NOT use your own resources to pay for their needs. Fast forward 20 years and where are you?
3-Get a separate phone number for personal use and don’t answer it during business hours. Yes, you might miss a real emergency but that is bound to happen anyway.
4-Focus on your aunt first as she seems the most vulnerable.
5-If you have a religious affiliation that is often a good source for information. Catholic Family Services was a huge help to me, and we are not Catholic.
6-never be embarrassed to ask for help or accept any that is offered. Mom's church took care of mowing her lawn, neighbors brought up the mail, one had a key for emergencies.
7- Get an appointment with a Medicaid case worker and discuss money, it’s better to know about this in advance of need so you can start pulling all the information.
8- Start researching options for senior living, sounds like you will need to start placing people soon. Go visit, talk to the directors, talk finances so you will know who needs what.
9- Find out who has POA, wills, etc, see a lawyer and get the paperwork organized.
10-NEVER sign any papers taking financial responsibility on yourself, always sign as acting for the parent. It's their problem, let them pay for it.
Its very, very hard to step back and let things happen and it will take some retraining on both parts to make this work. And do some research on dementia, no amount of wishing will make them change, it will only get worse. Good luck and let us know how you are doing.
You are in a situation that so many of us experience with our parents. They are living longer with poorer quality lives and spending every last penny they have on their care. You are very wise to be concerned about your own retirement and you cannot go on spending your own money.
Start by calling the local council on aging and go from there. Keep us posted !
all of these people need extensive care and you CANNOT physically do that. In order to use Medicaid aides it takes at least 3 months from time of application but their resources must be extremely low or you will need to consult an elder law attorney. Medicare doesn’t usually give aide services unless it’s short term after a hospital stay. Can you have them pay privately for a local person to run errands and do light housework for them? This will free you up mentally and physically.
Try to find a geriatric doctor to coordinate their medical care. Get a real explanation for the excessive dental visits or Fire that dentist.
Stay on this site because it provides a lot of info, ideas, and consolation.
Keep us updated, we’re all rooting for you!
I would suggest you get with your local Medicaid caseworker and see if it’s time to start/finish your drawdown and get whoever you can into a nursing home paid by Medicaid. You cannot use your money on them and expect to be able to pay for yourself later. Once they are down to $2000 (at least in Virginia) then Medicaid can assist and take the financial burden off of you. Yes, there’s a lot of paperwork involved, but it’s worth it. Just make sure you get a seasoned caseworker who’s not burned out. That is a thing to be aware of.
It’s no one’s fault that we’re living longer with poorer and poorer insurance and quality of life, and that the family unit is different than it was when Medicare was created and did not make allowances to cover long-term care of our seniors.
This is not your burden to carry or lose yourself over. And it doesn’t mean you don’t love them—it’s a matter of survival.
I wish you the very best.