I have posted here before and have found your support is very comforting with lots of wisdom. I signed up for an art class for 4 hours a week. I have been to 2 sessions and have found when I come home, I'm totally burned out. I was supposed to go today but had insomnia and cancelled. My caregiver still came and I am out, but I'm just too tired to enjoy it. My mother called me a selfish daughter and threw one insult after another making me feel so guilty. On top of that. I called the cremation society and the gentleman on the phone was nice but also made me feel guilty. My mother has some Dementia but can still walk. I asked her if she would like to spend a week in fairfax VA with her son and his grown children. Her answer is always no because she can't stand being around my sister in law. They won't help her anyway. I feel like I need 2 weeks of vacation just to regain my strength. I've had to cancel some important doc appts because I can't always afford a caregiver. What do you do when your own child and strangers make you feel guilty? Nursing homes are out of the question.
https://www.agingcare.com/discussions/boundaries-are-about-you-not-them-456081.htm?orderby=recent
Learn how to set some boundaries for yourself so you can save your own sanity.
And how does a cremation society representative make a person feel guilty, exactly?? Guilt is a self imposed emotion telling you you've done something wrong. What are you doing wrong by making final arrangements, or asking about final arrangements, for your mother who's 94??
For what it's worth, when the Catholic deacon came to the Memory Care home where I work on Sunday, he told me he prays daily for his 90 y/o mother to die. He feels it's a blessing to die, and that advanced old age is the true curse.
If you say that nursing homes are 'out of the question' for whatever reason, and insist on caring for mother at home, you'll need to find ways to take care of YOU and to shut down her insults and negativity towards you. Have you considered therapy?
Wishing you the very best of luck moving forward.
Seriously, I would NOT tolerate this kind of intervention. Find another cremation society.
Lealonnie and Minsu make good points. My first thought while reading your post is that you need to establish not only boundaries, but activities, what you will and won't do.
I do understand though that being in this kind of situation distorts common sense and self protection, and I don't mean that as an insult. It's like being in a rainstorm, or snowstorm; focus narrows to the existing issues of that time.
It isn't going to be easy but you have to stand up for yourself and establish a set of rules and standards.
Anyone who called me selfish would lose my support right then and there. If you can't afford a facility, contact an elder law attorney to help apply for Medicaid so you can find someplace for her.
This situation isn't going to change until (a) you change, or (you die) or (she dies).
Very good points! Essie, I don't think you are ever going to change. Do you?
Why is she being asked if she wants to spend a week with her son and his family? Why isn't she being told that is what is happening?
Your mother called you a selfish daughter because you go to an art class?!?!
Why are nursing homes out of the question?
From your previous posts, you've had some significant health (including mental health) problems. What would happen to your mother if you were no longer able to take care of her? If you cancel important dr. appointments, that could happen sooner rather than later.
Guilt is a self imposed emotion, fueled by fear...what are you afraid of? Have you considered therapy to get you on the right track?
I wish you the best.
We don't have to automatically accept other people's judgments.
Even soldiers at war are given leave. Keeps them able to refresh & continue.
Your army of one is sinking into the quicksand - you need a string of helpers to all be working together to pull you out. Then someone else takes the lead for a short time while you recover your strength.
Gather your family as your team & pull together. If they can't/won't help then use paid carers instead (in home if possible) or in a residential setting.
Second, a long time ago, I learned that no one can make me feel guilty. Feeling guilty is an emotion I allow. You can decide that you are doing the best you can under the circumstances and stop people in the middle of a sentence and
Say "I know you think you are being helpful, but you are not" I know that you that you are not trying to make me feel guilty, but that is what I feel when you do "Y. What I really need is physical and mental support? I need you do "X" Be specific
Why is a nursing home out of the question?
essie, if you love your space or bedroom in the home, that would be good respite too? You make clear to the caregiver that you may be texted if there’s any specific question, otherwise no knocking or calling out. Your favorite pillows, some snacks, a book, magazines or shows, and settle in.
I agree about sending her to your brother’s home regardless. Agree (I always think this) about going to a support group at a minimum, your own 1-1 counselor even better.
Folks here are showing how we can all magnetize or accept guilt as a habit, get to work on yours, you’re worth it. 💐
It's true that we shouldn't feel guilty if we haven't done anything wrong, but there are times when we wonder "am I doing something wrong?" admittedly caused by comments from others, "society" in general, and even religion (with some having "open-ended" requirements that one can never complete fulfilled but for which the leaders lay guilt trips on the members, just as the OP's mother and the man at the funeral home did). It's not necessarily a matter of good or bad; it's "could I, or should I, have done or given more?" that's often the issue.
Nursing homes are available for people on Medicaid. There is a facility out there that can care for your mom.
I would not present this as an option to your mom, I would tell her that this is what you are going to do. You can't be a good caregiver for your mom if you don't take care of yourself! I am a Geriatric Care Manager and have worked with the senior population over 20 years. I can't tell you how many of my clients caregivers actually died before my clients because they did not take care of themselves.
Don't let your family or other "well meaning" friends make you feel guilty for wanting to take a break, its not so much that you want this, it is that you need this break in order to provide your mom with quality care! If they are adamant that they do not want your mom doing a Respite stay then they can come stay with her while you go on vacation!
I see you signed up for a four hour class which is good but sometimes what you need is a true break a time away from your loved one!
I wish you the best!
I am also the caregiver of my 94 year old mom too, who is the sweetest lady on earth, almost too sweet! Even so, her dementia and medical needs wear me out, and when I have a sleepless night on top of that, I feel like I’m at the end of my rope!
It looks like I have found an assisted living that she can afford for 4 years. At that point, if she lives that long, she will be totally broke. But, that is our only choice. If still alive at age 98, we’ll have to look at Medicaid and another facility.
Here is what I did to get though my current caregiver role :
1) I found a little group of caregiver buddies at work. You’d be surprised at how many people are in a similar boat as you are, but you don’t know unless you talk to people. It was through one work buddy that I was able to get a private aide to come to my home for mom! Otherwise, we would have had to go through a home care agency! I learn so much from them and they learn from me too!
2) I got a folder and made it a part time job to find every resource available. I keep every program brochure in case I need it at another time.
3) I attended a session with an elder care lawyer to learn about the in’s and out’s of planning for long term care.
4) I called patriot angels, who filled me in on Aid and Attendance; we hired a lawyer they refer to, and mom was recently approved.
5) at every hospitalization (6 last year!)I requested to speak with a hospital social worker, and requested palliative care team meeting. Although she qualified for hospice during last 2 hospitalizations, we chose not to go that route. The palliative care team lead me to some good supports that I was unaware of.
6) I too had to cancel a few important MD visits. But made it a point to reschedule AND go!!!
7) I wasn’t afraid to stand up to “know it all’s! ” For example, my mom went to 2 1/2 weeks rehab, after her last hospitalization (I was very ill with pneumonia at the time). I didn’t like the assigned social worker, so I fired her. The reassigned social worker couldn’t have been any nicer!
8) I’ve become assertive. I have asked my sibling directly to come up for a week here and there in order to get away. My brother has come up twice from another state. He doesn’t care for her the way I would, but I let it go. It’s OK! He also volunteered to come up a weekend A couple months back so I could be free to do what I want for a weekend.
9).Whenever possible, I give my mother choices but don’t give her the opportunity to say “no”. She doesn’t have the judgement to really know what she needs, but if I give her two reasonable choices, she feels like she has some power.
10) 9: o’clock Is bedtime for mom almost every night. I go upstairs then, and although I don’t necessarily sleep, that is my time. She sleeps in a bed in our living room since she cannot climb stairs.
Also, don’t hesitate to speak with your mom’s primary care provider about her behavioral heath. There may be a medication that will improve her mood. Sometimes depression or anxiety can manifest as meanness. When people are afraid, they can appear angry.
If not, maybe you can have a caregiver come in regularly so you can get some sort of a break. I fought that idea as well, I didn't want mom to feel like she had to be "on", I didn't want her to have to sit with a "stranger", etc, etc. And I know introducing a caregiver can be scary and uncomfortable but it may be a manageable step you can set up quickly.
With a caregiver coming in at least she is in her own place, she is comfortable with that and you don't have the added worry of her being somewhere else. Especially for right now because you sound like you are at a breaking point. I don't know her financial position but if she is living with you, maybe you could use her money to pay for that caregiver? Her savings, her social security, something.
Also please don't give the rep at the cremation society another thought. Non-caregivers are quick to think everything is so easy when it comes to caring for another person.
It isn't easy dealing with nasty criticism from others. Getting it from multiple sources can make you, in your compromised being, believe that perhaps what they are saying is true. No. These are thoughtless, heartless comments. When it comes from family, esp one's own mother, it is so hurtful. If she was like this before any cognitive decline, then this is who she is and dementia will only ramp it up! If she wasn't like this before, then it is just the dementia talking. In either case, you will have to make an effort to harden yourself and ignore the comments. Walk away if/when she starts. People like the rep should be reprimanded. At the least, I would contact the owner and report it and let them know you will not be using their services. There are other places, and ALL of them should be understanding and help you get the services you need from them, not offer useless advice.
Whether you ask her or just plan to drop her off at your brother's, this is probably a bad idea, since you said "They won't help her anyway." Rather than taking her there and getting flak from them and her, is there any way your brother could help financially? I know some siblings are not helpful and refuse to provide any care or money. If this is how he is, don't waste time and energy on him. Ask once, maybe twice, then move on.
"I've had to cancel some important doc appts because I can't always afford a caregiver." NOT a good situation - you have to see to your own health before you can continue to take care of others!
"Nursing homes are out of the question." As others asked, why is this? She doesn't sound like she would qualify for a NH, but perhaps AL or MC? These are also expensive. Some state's Medicaid does cover these, but not many. I would certainly take the time to inquire. Only her income is considered, not yours.
Paying for caregivers should come out of her income, but in other posts you say your combined income isn't enough. Contact the local SS office to see if either or both of you might qualify for any aid, such as SSI and/or food stamps. Work with your current landlord, if there are smaller and/or less expensive units you could change to - you shouldn't have to lose the money if you aren't moving out of the complex, just downsizing. Credit check might happen, but it should show you are making payments. Also, so long as you are not behind on current rent, anyone with a brain (hopefully landlord has a working one!) would know that even if your credit score is not great, it would be EASIER for you to cover the rent if it was less AND helps you to pay off the debt sooner!
Checking into ways to reduce your financial obligations is a positive move for you. Put your remaining energy into that and focus on trying to improve the situation. Put up barriers to mom's insults and guilt trips (you need a trip/vaca NOT organized by her!) It will be hard and take time, but with each time you resist it will get easier. There will be setbacks, but plug on! Even if you can't go on vaca, walk away, even around the block, just to get away from her insults and burn off that anger! Understand you are doing the BEST you can with what you have to work with. You are NOT a selfish daughter, not after giving up 10 years of caring for her!
Under NO circumstances are kids responsible to financial care for their parents once the money is gone. They lived their whole life giving money to the government and now it is time to COLLECT on those monies. People have to become more educated of the rules of their state and the rules of the federal government.
I have been caring for my mom for about 7 years (she's 96). I feel for you and your burn out. I have never had children, yet I see some of the same "results" that a mom might feel. When I get tired and frustrated I yell at her and that upsets her and it is a terrible time between us for hours. I have to do better at leaving the room.
If your mom is critical of you, treat her like a child....since she is acting like one. Remove something that she likes from the room, or leave yourself. She is controlling you with her nasty words and it is time for that to end. If she shows more appreciation of what you have given up to care for her, things might get better. Do the opposite of what you have done when she gets critical...
for example, if you normally stay silent and "take it", SCREAM at her and yell, "STOP SAYING SUCH MEAN THINGS TO ME MOM, I AM DOING THE BEST I CAN!!" If you normally scream at her all day long and tell her how you hate what she says to you and it just become a screaming match all day long, do the opposite, leave the room, don't say a word when she criticizes you and come back to her 15 or 30 minutes later....even if it is just to go to the bathroom, close the door and read a favorite magazine or book.
I have tears for you right now. Your pain is hurting me since it sucks to not be appreciated. If you are religious, KNOW that you are earning your wings every moment and we here are pulling for you and hoping and praying SOMETHING on this thread you can use and get some relief.
I knew when things were out of control for me, the folks here were a HUGE help. Maybe find someone on here that is in the same position and write back and forth each day about how it is going....