40% of caregivers DIE before the person they are caring for. The rest end up physically, mentally, and often financially broken from caregiving. Holding anger is like drinking poison.
If you want to be the best caregiver AND survive, you need to establish boundaries that will protect your physical, mental, and financial health. These boundaries can change as YOU need them to.
Examples of boundaries would be moving mom to assisted living, hiring outside help for mom's care needs, sending her to a day program, and/or hiring outside help for your needs.
You don't mention what your mother is demanding, but you need to draw a line between true needs and frivolous whims. For example, you do not need to function as her live-in psychologist or entertainment committee. Even though it might be tempting, don't do things for her that she can still do for herself.
It is often said on this forum that caregiving must be done on the caregiver's terms, and that the person needing care doesn't get to call the shots.
I heard up to 60% of caregivers die before those they care for.
Thing is, I would guess that, for many, it’s a question of money. Who’s paying for assisted living, etc., when both the caregiver and the care recipient have not nearly what it costs? And that’s probably the biggest reason caregivers often stay.
But, although I’ve not actually been a caregiver, I was almost tasked with it, a few times and, for some of those recipients, including my mother and a neighbor, I very well realize, that care means being trapped psychologically, emotionally, and financially, with someone who either is or isn’t actually demented, yet still trying to destroy you. They are are supported by outsiders, with you being the sacrificial lamb. When a caregiver starts to think of what they’ll do, in regards to their own income, health, retirement and eldercare, the horrific indications are that all of that is being provided to the current recipient.
Another source of anger is that some recipients either never had or cancelled their long term care or other retirement options, because they felt entitled to free care from others, which not only includes family, but neighbors (been there). It should be noted that, at least from what I’ve seen, people who retire or even retire early (younger), can lose complete track of the idea that others are still out earning a living, typically, because they know they must. Nevertheless, a recipient may have no empathy for that and, if narcissistic, may only see the caregiver as an object which provides needs and wants and nothing else.
I feel sorry for caregivers in these circumstances. There are sooo many implications that cannot even be covered here. I, myself, have had to escape caregiving situations, which can become quite abusive. Situations not simply with family, but with a neighbor who decided I had no option, but to be her caregiver. You must think, as best you can that, if you’re going to be a caregiver, while painfully difficult, you have to try to maintain boundaries, to keep yourself alive.
My advice to any caregiver who is having to "cope with anger" overmuch is that they understand that in home 24/7 caregiving is no longer an option for him/her. It's time for placement and a return of the caregiver to being a son, daughter, spouse or other loved one, rather than the director of care.
This emotion should serve as a warning sign to step away so that the person who is being cared for can receive proper care, as well as caregiver finding peace in their life.
So sorry to hear.My husband and I took care of his folks for about 8 years.Mobility diabetes cancer and dementia.By the time we were almost divorced after 45 years of marriage. The anger and the guilt had overwhelmed both of us.We never took it out on them but we took it out on each other.Nobody in the family willing to help.So we hired a nurse and we moved to save our marriage.My husband went through therapy.Istill deal with the guilt for leaving.In the beginning you caregive with all your heart but as time goes on it can consume you.Definately not an easy task.
Just read your profile. You mentioned that you don’t have any regrets about being a caregiver for your mom.
You also say that you are frustrated at times. You and your husband had hoped to travel together in your retirement.
Perhaps, you bit off more than you can chew. None of us knew exactly how hard caregiving would be until we experienced it firsthand.
It’s okay to admit that this situation is becoming too difficult for you to handle on your own. You have very little help from other family members.
Your mother is 93, has mobility issues and is incontinent. That’s a lot to deal with.
Have you considered looking into assisted living for her? Then you can oversee her care as her advocate. You can make travel plans with your husband as you had planned on doing.
Going into assisted living or memory care (because of wandering) thoughts: Start looking at places and make sure they allow 1. Camera surveillance in your mom’s room-this will show you her routine and the care she is getting. 2. Don’t expect her to be social-get her a companion. My mom does so well with a one/on companion who comes in 4-5 hours a day 7 days a week. This companion began as my friend whom I introduced to her and we visited. I gave the woman enough background so she could relate to mom who struggles with using words but understands words. Then she “visited” mom on her own. She brings mom coffee, she paints her nails, she fixes her hair. Mom is resistant to shower help from the staff so I told mom I asked “friend” to help her and canceled the help of the aides. Mom was relieved. 3. Don’t pay for the extra care because they.will.never.do.it. Reasons will be staffing, your mom refused, short staffed. They will still take your money and not do the job. I have had mom in 3 places 2 had cameras. The one without the camera was wonderful for 2 months and then deteriorated. I was there and found mom had to leave; it was that bad. However, the place has great reviews and supposedly won awards! I found the last place through Seniorly.com. I tried a place for mom but it was not as good AND the follow-up phone calls were frequent. Mom is in her bubble of bliss. She has care, private help with the friend and a couple of her friends who work the weekends. I scheduled her friends for 2 meals. Lunch and dinner and they put her to bed after mouth care and eyedrops and lotions. I see the other residents and they are lost. They need the cueing and the patience and the friendly smile and touch. Even the ones without a mind. My heart was so sad that mom was in the awful place as long as she was but I am somewhat comforted that she had one/one support 4-5 hours a day. Now, I can look at her room (she thinks it is a speaker) and see her smile when someone comes in to check on her. See her routine of a night snack (animal crackers from the frig) and also her stressful movements (rocking back and forth). Those times, I drop in with Alexa Show and just distract her with familiar stories and love. I am her daughter and advocate.
Because ur POA does not mean u also need to be the caregiver. POA is a tool. It gives you the ability to watch her money so its there for her care. Does not mean ur at her beck and call. You have the ability to hire people on her dime.
Mom is in your home and your rules. She now needs u more than you need her. If shevis capable to do for herself, then she does it. Do not enable her or disable her. If she criticizes, you say nicely "Well Mom, this is the way I do it. If you can do it better, than feel free." Does she act like a child in her demanding, then treat her like one of your children. Say to her what u would to a child. "Mom I will do that after I am done this". "Mom I just sat down will do it when I get up again". "Mom, u can do that yourself". She is not your priority.
Your profile says you have no regrets on the living arrangements. So the answer lies in using adult daycare services and respite services for more frequent breaks. Add some outdoor walks and maybe a counselor. An angry caregiver is no good for mom or you
Anger is a common but difficult emotion for caregivers. A related emotion is often guilt (over the anger). As others have said, this isn't healthy for you -- which you know or you would not have sought advice on the topic. You might consider the Powerful Tools for Caregivers program which is generally offered for free (in person in some communities but available virtually as well). It is a 6 week commitment (once per week). The focus is really on providing better care for yourself so that you have the stamina to do this work. Dealing with difficult emotions is covered as is communication (including boundary setting and communicating with other family members about care needs) and a host of other topics. A pretty powerful book is included with the program.
In 2012, the PTC program was recognized by the Administration on Aging as having met its highest level criteria for evidence-based programs. You can find more information here: https://www.powerfultoolsforcaregivers.org/ and a schedule of classes here: https://www.powerfultoolsforcaregivers.org/class-type/caregiver-classes/
You are not alone. Anger, grief, guilt, depression....all are common on this journey. But there are things that you can do to help. The class might be a first step.
I've also found this free book helpful: https://thubtenchodron.org/books/working-with-anger-free/
Why is she not in adult daycare (which she pays for) during the week?
Also, Medicare pays for up to two weeks of respite care a year in a care facility so family caregivers can get a break. So you both can take a vacation if you want to.
No one has to become a care slave to another person. Everyone wants to do right by the people we love. However, when the care needs of the 'loved one' get to a point where they've taken over your life and home that's usually when it's time to consider placement in the appropriate care facility to meet these needs.
As caretakers we want to try and do it all, but this can become unmanageable. Once this happens it's time to plan for facility care. For now perhaps getting some help at home to give you breaks. Practice strategies for keeping calm like breathing deeply, walking away for a few minutes, call a friend or family member to let it out. Keep in mind that she can't help her behavior because her brain is broken. Good luck.
I’m sorry you are going through this but I completely understand. My father is the same way. He does not live with me but before being placed in the swing bed, I was his caregiver along with help. The best way to handle this is to set boundaries. I had to learn this! This forum and counseling has really helped me. I stopped letting him dictate. He is the type that wants you to do what he says when he says and I did this years and it broke me. I’m just now beginning to pick up the pieces and it’s tough. Try explaining to her that she lives with you and that you are doing the best you can try to care for her and yourself.
If you want to be the best caregiver AND survive, you need to establish boundaries that will protect your physical, mental, and financial health. These boundaries can change as YOU need them to.
Examples of boundaries would be moving mom to assisted living, hiring outside help for mom's care needs, sending her to a day program, and/or hiring outside help for your needs.
You don't mention what your mother is demanding, but you need to draw a line between true needs and frivolous whims. For example, you do not need to function as her live-in psychologist or entertainment committee. Even though it might be tempting, don't do things for her that she can still do for herself.
It is often said on this forum that caregiving must be done on the caregiver's terms, and that the person needing care doesn't get to call the shots.
Thing is, I would guess that, for many, it’s a question of money. Who’s paying for assisted living, etc., when both the caregiver and the care recipient have not nearly what it costs? And that’s probably the biggest reason caregivers often stay.
But, although I’ve not actually been a caregiver, I was almost tasked with it, a few times and, for some of those recipients, including my mother and a neighbor, I very well realize, that care means being trapped psychologically, emotionally, and financially, with someone who either is or isn’t actually demented, yet still trying to destroy you. They are are supported by outsiders, with you being the sacrificial lamb. When a caregiver starts to think of what they’ll do, in regards to their own income, health, retirement and eldercare, the horrific indications are that all of that is being provided to the current recipient.
Another source of anger is that some recipients either never had or cancelled their long term care or other retirement options, because they felt entitled to free care from others, which not only includes family, but neighbors (been there). It should be noted that, at least from what I’ve seen, people who retire or even retire early (younger), can lose complete track of the idea that others are still out earning a living, typically, because they know they must. Nevertheless, a recipient may have no empathy for that and, if narcissistic, may only see the caregiver as an object which provides needs and wants and nothing else.
I feel sorry for caregivers in these circumstances. There are sooo many implications that cannot even be covered here. I, myself, have had to escape caregiving situations, which can become quite abusive. Situations not simply with family, but with a neighbor who decided I had no option, but to be her caregiver. You must think, as best you can that, if you’re going to be a caregiver, while painfully difficult, you have to try to maintain boundaries, to keep yourself alive.
This emotion should serve as a warning sign to step away so that the person who is being cared for can receive proper care, as well as caregiver finding peace in their life.
You also say that you are frustrated at times. You and your husband had hoped to travel together in your retirement.
Perhaps, you bit off more than you can chew. None of us knew exactly how hard caregiving would be until we experienced it firsthand.
It’s okay to admit that this situation is becoming too difficult for you to handle on your own. You have very little help from other family members.
Your mother is 93, has mobility issues and is incontinent. That’s a lot to deal with.
Have you considered looking into assisted living for her? Then you can oversee her care as her advocate. You can make travel plans with your husband as you had planned on doing.
Best wishes to you and your family.
Mom is in your home and your rules. She now needs u more than you need her. If shevis capable to do for herself, then she does it. Do not enable her or disable her. If she criticizes, you say nicely "Well Mom, this is the way I do it. If you can do it better, than feel free." Does she act like a child in her demanding, then treat her like one of your children. Say to her what u would to a child. "Mom I will do that after I am done this". "Mom I just sat down will do it when I get up again". "Mom, u can do that yourself". She is not your priority.
In 2012, the PTC program was recognized by the Administration on Aging as
having met its highest level criteria for evidence-based programs. You can find more information here: https://www.powerfultoolsforcaregivers.org/ and a schedule of classes here: https://www.powerfultoolsforcaregivers.org/class-type/caregiver-classes/
You are not alone. Anger, grief, guilt, depression....all are common on this journey. But there are things that you can do to help. The class might be a first step.
I've also found this free book helpful: https://thubtenchodron.org/books/working-with-anger-free/
Also, Medicare pays for up to two weeks of respite care a year in a care facility so family caregivers can get a break. So you both can take a vacation if you want to.
No one has to become a care slave to another person. Everyone wants to do right by the people we love. However, when the care needs of the 'loved one' get to a point where they've taken over your life and home that's usually when it's time to consider placement in the appropriate care facility to meet these needs.
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