I’m not exactly sure what your question is but I am willing to try and answer your post.
Are you living with your family? Are your siblings at home as well? Are you expected to be your mom’s caregiver?
You say that you are burned out. Of course, you are if you have been caring for your mom for three years.
You say that your father doesn’t understand about mental health? Are you referring to your own mental health, your mom’s or your father’s mental health?
How far along is your mom with her kidney disease?
Can you answer these questions so that we can address your concerns.
I am so sorry that you are struggling with this. If you don’t want to be your mom’s caregiver, please look into alternative options for her care and speak to your parents about viable options for care.
Contact Council on Aging in your area and have them do a needs assessment. Ask them what they recommend. Make sure that you tell them that you are not going to be available to be her primary caregiver.
Check to see if you have NAMI in your area for mental health care.
Why are you your mothers caregiver and not her spouse, your dad? You Are NOT responsible for your mothers care, your dad is. So step away and let your dad do his job. If you're always there doing for your mother, why would he step up and do his job of caring for her right? Your mother is a young woman and that means you are too, so take your life back. And don't be mad at your siblings. They are actually the smart ones who know enough that your mother is not their responsibility. Now you have to learn that. You don't give us much to go on, but I hope and pray that you're not living with your parents. And if you are, move out ASAP and get on with living and enjoying your life. And let your dad handle things here on out. That's HIS job, not yours.
Why isn't your Dad doing the bulk of the caregiving? Why isn't he the one looking for a solution? Or is he?
The short answer is for you to move out. If you don't live there, stop going there and being the solution for the others. Your parents are full-grown adults who are perfectly able to take responsibility for themselves and solve their own problems. Don't enable their helplessness. They aren't helpless.
If you feel too guilty walking away (and you shouldn't feel guilty) you can leave them the info to call social services for an in-home assessment that your Mom may qualify for. If she needs help getting to dialysis the county may have an affordable ride service. She's 60 so not on Medicare yet... If your Mom has all her mental capacity then no one has any control over how she cares for herself. And you are not obligated (and neither are your siblings) -- you've done yeoman's work for 3 years and that's plenty. No one can be assumed into the caregiver role. Now you need to take care of yourself.
If you live with them in their house, make yourself scarce so they and practice saying "No" and "I don't want to do that." Then keep directing them to the county social services. They will be mad as hornets, but that won't matter if you lose yourself to burnout. Maybe couch surf at a friend or relative's house for a while until they figure out how to be adults.
If I've gotten anything wrong, please provide info to correct it so we can give you support and guidance. I wish you clarity, wisdom and peace in your heart as you step away and live your life, as you should.
Hello.. I can understand the feelings of burnout. I have been caring for my father since my mom has been gone ( 21 years) and I'm very tired. I do not have siblings and my father does not want to get extra help. He is almost to point of needing constant care and there is no way I can do that and work. Also, the kind of help I foresee him needing, I'm not qualified for. Are you able to get in home help such as Home Heath Care? Please try to look into it because as you said, mental health is important and needs to be protected. Prayers to you.
Prayers, too, for you Faithfulbeauty. Do NOT give up that job, even when you are eligible to do so. You will need both your financial future secured and your emotional health intact, in order to have a retirement that you might enjoy. Please take care of yourself! Your father will need to choose between In Home Health or an Assisted Living Facility. I hope you will visit some facilities that have the full continuum of care. Twenty-one years is a long time. Even though your Dad does not want "extra help" perhaps he will see the wisdom of choosing helpers as opposed to residing in ALF. And, no, he's not going to like having to choose between only those two, but reality must sink in for him soon. And: for you, also.
Have you thought about trying respite care? It's different in every state but they offer care to your loved ones in order to give you a much needed break. If you qualify the state will pay for it. If your interested I can help you get more information for respite care in your state or you can just google respite care and the name of your state and get information on it in your area. Your mental health is important and I hope this helps you. <3
You are not alone in this. I sometimes think I can't do this anymore. I feel trapped and my life is going nowhere. Respite gave me a few days but it's right back to where it was. I just try to accept life on life's terms and know it won't last forever and how much I am going to miss her when she's gone.
IHSS In Home Support Services is in every county and state, find out what’s available in your area. I don’t recommend you “tough it out” after 2 years you experience burnout if not before and it does start to effect your health long after it’s over which is hard to reverse.
It is draining...,..it seems like your sibs have turned away as they don't want the responsibility that goes with this, so are only interested in protecting themselves and care little for family. It's not unusual ..where is your dad and why isn't he helping out? Maybe it's more convenient for him to dump it all on you.
Caution....preserve yourself and your own life....your own sanity....that's easier said than done as my mother and father came to rely more and more on me. I think that they no longer cared about an adults child welfare.
The system is crooked too ...for profit SNF's who get medicare dollars for they claim to be in rehab ....when no rehab is possible
As far as my mother's LTC policy that she had for years, wouldn't pay out a penny....said social case worker was too busy.
And the damn crookded snf refusef to send in the required paperwork to LTC even after the the elimination period was met.
It's sad that there are people like this in the world....after phone calls, documents, they still wouldn't do what was required......I truly think one word .... sadistic.
I was truly having a breakdown.of my own from all the stress.
What a horrific time of life, when I thought I'd be enjoying my so called "golden years,"..
Finally I took her home and got her approved for the second hospice after renouncing the first.
I didn't see and wasn't told how hospice replaces a large part of not all medicare part a.
Changing diapers until I called 911 one night....c diff.
The cost of SNFs is absolutely prohibitive ..LTC was supposed to help but didn't even collecting premiums for years....when I got the next bill for a premium my mom was on her deathbed.... the salesman argued with me to wire the money or the LTC insurance would be dropped....my looked so bad at this point that I was the primary caregiver on hospice....I didn't pay the worthledd LTC premium....it was way past that anf all those yesrs of paying for something worthless...let it drop!
My best to you.....I tried changing diapers and doing all ADL s for my mother...it was that or bills from the crooked SNF's that wouldn't even let hospice in b
Oh how I can relate! We paid premiums over twenty years amounting to about $80K. I have been locked in battle with Lincoln Benefit Life long term care insurance for many many months since my husband died in Nov. 2022. Letters from lawyer who is trying to help result in piddly responses. It's a good thing that the industry not selling long term care insurance anymore if my experience is any example. Next step: State insurance commissioner. We'll see if they can do anything.
I can relate to your situation. I have been caring for my 72 yr old wife full time for 13 yrs and part time (evenings and weekends) for 5 yrs till I retired. My wife was diagnosed 44 yrs ago with MS and now is a total care patient and unable to do anything for herself.
I am blessed to be in good health and sound mind although 79 yrs old. The demands for her care are definitely wearing on me.
Fortunately my wife enjoys just watching tv from the bed which minimizes the demands on me for a couple hours at a time. The few hours affords me to go out for lunch, run an errand, go hit golf balls or another activity. I have also joined a local group that meets occasionally for lunch or just to talk and plan a social activity.
Our relationship is now more patient-caregiver with virtually no conversation. Loneliness is a constant companion. I have gone to lunch with a neighbor lady whose spouse passed away 6 yrs ago and it has been very helpful to talk with her about her experience in caring for him and how she dealt with her grief after his passing. These conversations have been beneficial for both of us. There are times I just get in my car and drive and often find a shady spot to just sit and think and reflect on what must do for her care, why I am doing it and clear my head so that I have a positive frame of mind.
I plan to care for my wife at home, hopefully to her end of life. I get a lot of advice from family and acquaintances who have no idea what is required but no offers of help. I have interviewed a number of home care agencies but none will perform the tasks required for her care which requires me to continue what I am doing. I have given some thought to respite care for a couple of weeks and will explore that.
Possibly the ONLY thing you're going to get from "concerned friends, family and acquaintances" is advice: put her in care, hire somebody, blah blah blah; NOT genuine offers of help -- can I bring a meal, what would taste good to you, what can she eat. I was fortunate caring for my husband at home until he died in the home he designed. Blessed neighbors: "you stay here and visit, I'll go sit with him for awhile"; "come over and have a cool drink while I visit with him"; "I think we can wheel him over to the party in his wheelchair" --- I wish every caregiver could have the kind and considerate neighbors I am blessed with. I thank God for them every day of my life. He died on Thanksgiving Day last year. My neighbors have sustained me since.
On the off chance that you get an offer for genuine help, TAKE IT. Don't demur, let friend, neighbors and family help or you'll drive yourself nuts and fail because of fatigue.
Please consider providing helpful support or omit responding. This woman is suffering and asking for support. Please remember that how you respond here matters to those reaching out for real support.
Talk with mother's PCP, explain your situation and that you cannot continue with the 24/7 care. Ask physician to provide a current " level of care needs assessment" for your mother, get PCP to make referral options which may include a Licensed Social Worker or other Case Manager who can help you all arrive at the much needed change in caregiving for mother. Tell PCP , your mother, father and family that you are not continuing in the role due to your health and in x time you will no longer be available. Hence you are getting the other options in place . Do you have POA status? If not, who does? If it is still the spouse, then perhaps you folks need to revisit POA for both mother and father . This may sounds harsh maybe but for everyone safety and well being, reality checks are needed . If you don't get support from father for this, walk out and call APS ( ADULT PROTECTIVE SERVICES) to go in and address needs in the home.
Yes, yes, yes to all this! You have gotten some blowback from the hyper-sentimental softies here, but you are spot-on, Janice. I only hope that the original poster heeds your sane and sensible advice!
Depending on where you live, contact your Department of Aging for your state/county to see if they can come do an assessment and let you know if there are some services they could provide or at least give you some information that could be useful in your area.
i hear ya!! you can talk to places and have aides come to the house. Just keep searching on line there is help out there! I forget exactly who but it's been a while but you can get answers
Short answer is you need more help. Ask family, friends, members of your (or their) faith community... to help a few hours or a few days every week. Help can be providing hands-on care for your loved one while you run errands or providing help for you (delivering groceries, laundry, housecleaning, yardwork, run errands...).
Basically, you need enough help so you can: 1 - get 7-9 hours of uninterrupted sleep every day, 2- eat 3 healthy meals at an unhurried rate every day, 3 - time off to meet your health and hygiene needs daily, 4 - at least 1 hour (and usually more) off daily to do whatever gives you joy every day, AND 5 - several hours off weekly to nourish your relationships with others you enjoy being with doing things you enjoy together.
If you can not get enough volunteer help, seek paid help - sitters, home health aides, etc. and use your loved one's finances to pay for the help.
Absolutely contact your mom’s primary care physician and ask for home health services that include a social worker. Most social workers in those positions will have a list of tried and true caregivers and sitters that are available for MUCH less than you’d pay an agency. Also Dept on Aging office can evaluate to see if your mom qualifies for any personal assistance (bath aid, house cleaning, meal prep, laundry, respite, etc.) that are income based but almost all qualify for bath aid and cleaning.At 60, I assume your mom is disabled and may also qualify for services there. You can also check with local hospice for a list of caregivers along with local Senior Center and churches. I care for my 98 year old mom and work full time. I have been able to manage with the help of caregivers during the day with me on nights and weekends. I was really feeling overwhelmed and recently added a bath aid and occasional weekend (Saturday) sitter as her needs have increased and I need a break. Planning on overnight sitter one or two days during the week because as her dementia has increased, my sleep has decreased. Whatever you decide to do, wishing you the best.
Someone on the forum once wisely said there will be no other solutions as long as you are still the solution, the only way to force your parents to change is to step back and let the chips fall.
Reach out there are programs that help the care giver. When our father declined we reached to the dr who got us help. Some came in for 3 hrs to do whatever was needed (cleaning, feedings, housework, to give you a break.
Have you considered placing mother in Skilled Nursing, either permanently or for respite care so YOU can regroup? Burn out is a serious matter for caregivers and not something to be taken lightly. Many caregivers die before the elder they're caring for due to stress and lack of caring for THEMSELVES, unfortunately. I'd hate to see such a thing happen to you my friend. Please look into alternative care for mom now, either outside the home or by bringing in paid caregivers to relieve you.
Are you living with your family? Are your siblings at home as well? Are you expected to be your mom’s caregiver?
You say that you are burned out. Of course, you are if you have been caring for your mom for three years.
You say that your father doesn’t understand about mental health? Are you referring to your own mental health, your mom’s or your father’s mental health?
How far along is your mom with her kidney disease?
Can you answer these questions so that we can address your concerns.
I am so sorry that you are struggling with this. If you don’t want to be your mom’s caregiver, please look into alternative options for her care and speak to your parents about viable options for care.
Contact Council on Aging in your area and have them do a needs assessment. Ask them what they recommend. Make sure that you tell them that you are not going to be available to be her primary caregiver.
Check to see if you have NAMI in your area for mental health care.
Best wishes to you and your family.
So step away and let your dad do his job. If you're always there doing for your mother, why would he step up and do his job of caring for her right?
Your mother is a young woman and that means you are too, so take your life back.
And don't be mad at your siblings. They are actually the smart ones who know enough that your mother is not their responsibility. Now you have to learn that.
You don't give us much to go on, but I hope and pray that you're not living with your parents. And if you are, move out ASAP and get on with living and enjoying your life.
And let your dad handle things here on out. That's HIS job, not yours.
The short answer is for you to move out. If you don't live there, stop going there and being the solution for the others. Your parents are full-grown adults who are perfectly able to take responsibility for themselves and solve their own problems. Don't enable their helplessness. They aren't helpless.
If you feel too guilty walking away (and you shouldn't feel guilty) you can leave them the info to call social services for an in-home assessment that your Mom may qualify for. If she needs help getting to dialysis the county may have an affordable ride service. She's 60 so not on Medicare yet... If your Mom has all her mental capacity then no one has any control over how she cares for herself. And you are not obligated (and neither are your siblings) -- you've done yeoman's work for 3 years and that's plenty. No one can be assumed into the caregiver role. Now you need to take care of yourself.
If you live with them in their house, make yourself scarce so they and practice saying "No" and "I don't want to do that." Then keep directing them to the county social services. They will be mad as hornets, but that won't matter if you lose yourself to burnout. Maybe couch surf at a friend or relative's house for a while until they figure out how to be adults.
If I've gotten anything wrong, please provide info to correct it so we can give you support and guidance. I wish you clarity, wisdom and peace in your heart as you step away and live your life, as you should.
Caution....preserve yourself and your own life....your own sanity....that's easier said than done as my mother and father came to rely more and more on me.
I think that they no longer cared about an adults child welfare.
The system is crooked too ...for profit SNF's who get medicare dollars for they claim to be in rehab ....when no rehab is possible
As far as my mother's LTC policy that she had for years, wouldn't pay out a penny....said social case worker was too busy.
And the damn crookded snf refusef to send in the required paperwork to LTC even after the the elimination period was met.
It's sad that there are people like this in the world....after phone calls, documents, they still wouldn't do what was required......I truly think one word .... sadistic.
I was truly having a breakdown.of my own from all the stress.
What a horrific time of life, when I thought I'd be enjoying my so called "golden years,"..
Finally I took her home and got her approved for the second hospice after renouncing the first.
I didn't see and wasn't told how hospice replaces a large part of not all medicare part a.
Changing diapers until I called 911 one night....c diff.
The cost of SNFs is absolutely prohibitive ..LTC was supposed to help but didn't even collecting premiums for years....when I got the next bill for a premium my mom was on her deathbed.... the salesman argued with me to wire the money or the LTC insurance would be dropped....my looked so bad at this point that I was the primary caregiver on hospice....I didn't pay the worthledd LTC premium....it was way past that anf all those yesrs of paying for something worthless...let it drop!
My best to you.....I tried changing diapers and doing all ADL s for my mother...it was that or bills from the crooked SNF's that wouldn't even let hospice in b
I am blessed to be in good health and sound mind although 79 yrs old. The demands for her care are definitely wearing on me.
Fortunately my wife enjoys just watching tv from the bed which minimizes the demands on me for a couple hours at a time. The few hours affords me to go out for lunch, run an errand, go hit golf balls or another activity. I have also joined a local group that meets occasionally for lunch or just to talk and plan a social activity.
Our relationship is now more patient-caregiver with virtually no conversation. Loneliness is a constant companion. I have gone to lunch with a neighbor lady whose spouse passed away 6 yrs ago and it has been very helpful to talk with her about her experience in caring for him and how she dealt with her grief after his passing. These conversations have been beneficial for both of us. There are times I just get in my car and drive and often find a shady spot to just sit and think and reflect on what must do for her care, why I am doing it and clear my head so that I have a positive frame of mind.
I plan to care for my wife at home, hopefully to her end of life. I get a lot of advice from family and acquaintances who have no idea what is required but no offers of help. I have interviewed a number of home care agencies but none will perform the tasks required for her care which requires me to continue what I am doing. I have given some thought to respite care for a couple of weeks and will explore that.
On the off chance that you get an offer for genuine help, TAKE IT. Don't demur, let friend, neighbors and family help or you'll drive yourself nuts and fail because of fatigue.
https://www.nia.nih.gov/health/what-respite-care
Basically, you need enough help so you can:
1 - get 7-9 hours of uninterrupted sleep every day,
2- eat 3 healthy meals at an unhurried rate every day,
3 - time off to meet your health and hygiene needs daily,
4 - at least 1 hour (and usually more) off daily to do whatever gives you joy every day, AND
5 - several hours off weekly to nourish your relationships with others you enjoy being with doing things you enjoy together.
If you can not get enough volunteer help, seek paid help - sitters, home health aides, etc. and use your loved one's finances to pay for the help.
I wish you the best of luck with all of this.