Caregiving is horrible I have been taking care of my mother in law who had a stroke two years ago she can walk and get around she won’t she refuses to do anything I have been her best advocate since the stroke but her games and needing to be coddled are over all the help I have had are gone she is a nasty women I cannot take it anymore she has ruined my life and my families it’s jidt her son and I and I pray everyday this nasty women will die there are people who are worse off than her who want to live and she just sits all day in wheelchair and expects to be catered to she is of sound mind also she is a mean horrible person
From what I have viewed the majority of the organizations, specializing in Dementia or Alzheimer's, are in large cities where distance travel for rural caretakers is a problem. In home caregivers is an option but at $17 an hour it is not financially feasible. Local ALF's with memory care units are full and no longer an option. Word of mouth caretakers are either already committed or never call back. Adult daycare is available @$11 an hour, $55 a day from 8-5. This is a great service, for working people's wards, interacting with patrons around the same age with meals and activities. However, due to the hours of operation, an evening out is not possible. I found the closest organization is 35 miles; the next is 60. I am not complaining, I am stating facts; for which I know we are not alone. Elder affordable care in this country, or lack of, is disgraceful, compared to other free countries in the world. Being the wealthiest country in the world, this lack of affordable elder care speaks volumes. We could have dumped my mother in a home 11 years ago and walked away, but did not. Caretakers who take responsibility should be recognized and assisted to prevent burnout. It's past time this country's government allocate funds for this purpose for it's elder citizens that did their part their whole life and now need well deserved assistance.
h*ll i get kicked out of the house everyday .she keeps threating me i wish i could leave ..she drives me nuts & she is so deaf i got to yell then she gets mad cause i got to yell ..& then she get mad cause she wanted to stay in bed then when she gets up she is mad cause i let her stay in bed ...SO MUCH FUN !!!!!!!I WISH SHE WOULD FIRE ME .
My husband and I are taking care of his mother. His brother refuses to help. We need a vacation and my husband feels that if we put his mother into a facility while we take a vacation that we should be the ones responsible for paying for it, even though his mother has the money to do so. She has been able to save so much money since she has stayed with us. I feel she should be the one to pay for her care if we take a vacation. Who is responsible for this financially?
I'm sending my mom to the local nursing home for a week of respite tomorrow, and this morning my anxiety about it is really starting to kick in... I guess it's kind of like sending your child off to summer camp for the first time LOL! I know she'll be looked after, and it's only for a week for pete's sake, but I feel bad as I know she will have a hard time adjusting to the change in routine and the staff there will barely have time to figure out her needs before I'll be picking her up again. But it WILL be nice to sleep in and not have to deal with her incontinence for a whole week. (think positive thoughts...)
Well Leakey, I would only have one thing to say...Please be careful. You do not need to have a relationship with anyone now and have it break apart and increase your already stressed life. I am not assuming you would have a relationship with this person, but you might be vulnerable. Please be careful and have fun. I am so sorry that your wife in in memory care. I do not know how you do it for 6 or 7 hours a day. Being around so many people with Alzheimers would make me very depressed also. We have our brother in law in a locked facility and it went well for about a year and in the end, I could not go there. I just could not do it. It brought me down so much. My Partner went by himself. In the end our visits were maybe 30 minutes every other day. In the beginning, they were hours long and I even volunteered to help others. His daughter lived in another state and did not feel one bit bad about turning her responsibility over to us. We just could not walk away from him. My partner grew up with him. She sent us a whole $50.00 a month to help with expenses. We never complained but lost a great deal of respect for her
Wife with alz has been in a secure N.H for 2 month I spend 6-7 hrs a day there and it is a very depressing place to go every day .i do need a break but what to do have a friend who lost her husband a couple yrs ago(we were good friends all our life) lives 600 miles away and wants me to come for a visit it would be great but not sure how that would look.
Good ad, but......................................Why do we take for granted that the loved ones cared for are ALWAYS ELDERLY, and the care giver there for an older or senior person ? There are care givers who are young, or young at heart, and they definetly deserve a vacation, time off, and age appropriate advise and guidance. Any input about the above will definitely be appreciated by those Care Givers.
My Mom does not have dementia but she is in need of help with all her activities of daily living. Meals, meds, toileting, dressing and catheter care. I would love a break but I can't afford it. I was wondering if any of you has used Care website?
When I was a practicing family physician I encouraged caregivers to be sure they took care of themselves, as they would be of no help to their loved one if they themselves fell apart mentally or physically . I've read the results of studies showing the health toll on caregivers. I am on disability due to cognitive deficits from repetitive mild TBIs, and according to studies have quadrupled my risk of developing Alzheimer's dementia as well as a having a statistically significant shortened lifespan. Being a full time caregiver is not onerous, but in order for me to preserve my health and be there for Dad, I need breaks. DAd goes to an adult day program for about 6 hours twice weekly, and an aid comes in for 2 hours twice weekly to shower and visit with him. We've taking him on camping trips and 1 week into a 2 week oceanside vacation he was "bored" and wanted to go home all he wants to do is sit all day in his recliner and reads books. Since that is all he wants to do, I don't feel guilty leaving him in one of 2 quality respite facilities in our area, one being the Community Living Center of the #1 ranked customer service VA in the country. I know he gets good care, and I get a chance to work on maintaining my health and relationship with my partner so I can be around for as long as he needs me. My 5 other sibs all think he should be in a nursing home, none can/want to deal with his incontinence issues and other general medical needs so they are of no help. I hope he can stay with me to the end, and I'm working on what I need to do to be able to do that.
Caregiverslight... I totally agree. The damage and fear that occurs when I leave would not be a great things for him to experience. I just cannot do that to him
Well this is a great idea and our local Retirement Home does rent out by the day for respite care. HOWEVER, the damage that is done while I am gone would outweigh my leaving. My Partner would be so sad. He just cannot seem to imagine life without me. If I go to the store, I must call him at least every 30 minutes or he is lost. The memory thing has not affected our relationship so far, as we are so totally ONE. But, he get frightened easily while I am gone. I will give it some thought.
Way easier said than done. I'm alone and I still work full time. My boss could care less what I go thru as long as my butt is in the chair on time for 8 hours a day. Time off to take mom to Doctors is taken as vacation
I must say that I thought I waited too long to get respite care because I felt guilty and I was wrong! I let myself reach the point where I was angry almost all the time! Finally my hip started hurting so much I could hardly walk and I had non stop fever blisters. So I placed my 90 year old husband in assisted living for the summer. He is adjusting well! (By the way he had said he would rather commit suicide.) He may have believed it would make him suicidal at the time but isaying that was also a good way to keep me in my chains. I am very glad I overcame my guilt, listened to my body and bought myself a long rest!!!!! Now I am healing and he is laughing with the "inmates". Enjoying the good food and the activities. It has worked out well for both of us.
Very good I put my wife is respite at nursing home this weekend it's a big adjustment for both(she hung on and cried when I left the first night) but seemed to like it during the day .she has alz but will try it again as it may help to prepare for when she will have to go in full time .so sad as I cry to
There is nothing in writing about anything. She has just always kept a notebook of every dollar she gives to anyone, for birthday, christmas, anniversaries, etc. She has never asked for repayment, except for when she is not getting her way, then she holds it over your head and thinks that it means you have to do what she wants when she wants it. We have tried to pay her back and she wouldn't take the money. They don't need the money. They have too many assets as it is, which disqualifies them from getting "free" assistance. We have already had a home health evaluation done on them, and they were told that it is not safe for them to do everything on their own and they either need to hire someone to come in and do stuff or they need to go to a nursing home. The Eval. report was given to their doctors, who told them the same thing. She basically said the doctors are quacks and don't know what they are talking about, she can do just fine at home. Unfortunately, you cannot force them to get help or go to a home, until a tragedy happens, at which time I will get the blame for not being there 24/7. I have small children at home I would love to spend time with. I do not mind helping mom and dad out once or twice a week. But when they want something every day and then tell me I don't do enough, and I'm overcharging them for their groceries (for which I give them a receipt, and buy my own separately) and accuse me of stuff, and say they refuse to pay someone $10 an hour to do stuff I can do for free. I just can't deal with the stress of it all anymore.
Farmer Fred1 What a mess. Time to get realistic. For everything your parents have given or loaned to you over the years did you sign any document agreeing to repay them? if you you did not there is no way anyone could prove it was more than a gift such as is the case with money provided to children by many parents. The relationship between your parents is their business alone and has clearly gone on for many years so there is no way for someone to influence that. Mom has her means of getting her way and Dad lets her. You may need to have a tlk with adult protective services to see if they can intervene because clearly the parents need help and without it would be unsafe. You don't need to tell APS about the parents previous moneyary contributions if there is no proof they were anything but a gift. have you kept up your part of the agreement to repay the money loaned for your mortgage? If not that is either a matter for either your conscience or for legal intervention either by the parent possibly assisted by your brother. Think about hit. We are sympathetic to peoples situations but not here to encourage those who truly do owe their parents a debt. They helped you in your time of need now they have needs whether they are being realistic or not.
Tell your brother to go ahead and sue you. It doesn't sound like you owe him any money so I can't imagine what grounds he has, but let him spend money for a lawyer to tell him that.
Your parents loaned you a certain amount of money. Your dad said staying in town and helping them would cancel the debt. I don't imagine any of this is in writing, is it? What if you put something in writing now? What if you had an Elder Law attorney draw up an agreement saying what you are doing for them and how much of your indebtedness this cancels each month?
The contract could say you transport them to up to 5 appointments a month, that you do lawn care twice a month, etc. etc -- whatever is within your capabilities and energy level. You get the going hourly rate for these things, but it is applied directly to your loan. If it isn't in the contract (such as laundry or housecleaning) you don't do it.
I think it is too bad you didn't take the higher-paying job out of town. And I think it is sad that a legal document may be needed here. But you can't count on your mother or brother to treat you fairly, and while your father seems to be more realistic you can't count on him standing up for you. So, put it in writing.
As for your mother expecting you to pay them back for college ... good luck with that, lady!
dad just got back home after being in a nursing home for 2 months to regain strength after being in hospital for an extended period. mom and dad are both 90. I work nights and have a family of my own. My siblings all live out of town, so everything falls on me. I told mom and dad that I am burned out (I've been caring for them since dad's illness started, 18 months ago) and they need to have some outside help. Dad wants to move into the nursing home, but he won't go without mom, who says hell no, she won't go. I would just like someone to come in a couple hours a week and help them with their laundry and dishes and some housekeeping. I have my hands full having to make 3 trips to the grocery store for them weekly, making their doctor appointments, taking them to doctor appointments and everything else they ask me to do. I don't think it is unreasonable to have a little assistance, to take a little of the load off. We found a lady to come in twice a week for $10 an hour. She started a couple weeks before dad got back home. The lady would come in, do some stuff for mom, then drop her off at the nursing home to visit dad. Then right before dinner time, I would go over to visit with dad a bit and then take mom home. I guess mom thought she was just for giving her a ride, because as soon as dad got back home, mom told her not to come over any more. (actually the lady showed up and mom wouldn't answer the door to let her in and took her phone off the hook.) Dad says they need help and to call someone to come in. Mom says "no, you will not." So dad goes along with what she says because if he doesn't, he is the one that has to listen to her carry on and cry, like she did when we built him a ramp and got him the medic alert call button. She went on for months about how much she hated them (actually she still does) and doesn't want them. She even threatened to destroy the ramp and call button and said she would kill herself if we got them. 3 falls from dad later, he finally put his foot down and we got the ramp and button, but she still cries about it. So to answer your question, how does she refuse help? she won't let them in! Mom and dad have their own house, we do not live with them. Mom lent us some money a few years ago to help with some of our medical bills. In order to be able to repay them, I was going to take a higher paying job out of town, but dad started crying saying I had to stay in town and help take care of them. He said if we stayed in town to do that, then that would be better than repaying them with money. He begged and pleaded, so I caved in. I guess I should have left then. As for my brother threatening to sue, mom is telling him that she gave us lots and lots of money and we won't repay her and we won't do a damn thing to help her (even though we are the only ones that help her). She is even telling me now I have to pay back what she paid for me to go to college, 30 years ago, on top of every cent she ever spent on me my whole life.
Fred, how does your mother refuse help from other people? Does she throw a tantrum or physically get in their way, or what?
Is your father at home with her? Doesn't he get a say in who comes into the house?
What on earth would be the grounds for your brother suing you? Do you have some kind of an agreement about what things you will do? Are you living with your mother?
More information would allow us to be more specific, but basically it comes down to this: You may not be able to control the decisions your mother makes, but you can control the decisions you make. She can decide not to allow a housekeeper in, and you can decide not to do housecleaning. Why should Mom let strangers in when she has you? By giving in you are enabling her demanding behavior.
I really can't figure out where your brother is coming from. Please give more details.
How do you get a break when your mom refuses to let anyone but you help? And when you do help her all she does is belittle you and make you feel bad and threaten you? dad wants the help and asks me to get some outside help because I cannot do it all myself, but mom flat out refuses. My brother is threatening to sue me if I don't do everything myself.
I loved the article and I have to take some time for myself. My brother and sister could care less about what I'm going through and my mom has no dementia, but is very depressed and recently lost more of her vision. Thank you.
Thank you Veronica and Jeanne at least someone understands!! And yes I am burned out but I can not afford respite care in a nursing home, I was told Medicare does not pay for that. She doesn't want to go anyway and I don't want to force her out. I talked with my Mom today and all she says is that I just need to stop worrying that I create my stress. She is not even entertaining the idea of going anywhere for respite care. My brother and his wife said we all have stress you just have to suck it up. Why is it none of them understand?? I feel guilty all the time and now its turning to bitterness. Please don't misunderstand I love my Mom dearly but I feel like a disappointment because I can't handle this anymore. I am off tomorrow so I am going to go to the Area Council On Aging Monday and see if there is any help available. Thanks for listening God Bless you all.
sickandtired2, please take your doctor's advice. It is too late to avoid burnout, you are there. But you absolutely need respire care for Mother, to avoid serious or catastrophic health consequences. You cannot control your relatives' decisions. You can make your own decisions. If you need help locating a suitable facility, start by asking your doctor.
Sick and tired. You are beyond needing a break it has become a medical necessity. If no other family member cares enough to take her for a couple of months then the answer is respite in a nursing home for Mom. What happens if you are hospitalized with the lupus?
I am a 49 year old Daughter living with and caring for my 76 year old Mother for the last 2 years. Previously cared for her on and off for at least 10 years through multiple falls and back surgeries. She is non compliant regarding safety issues ie: not trying to bend over to pick up a microscopic piece of lint off the carpet at the top of the stairs. We have been in and out of the hospital and nursing home for falls, broken bones, pneumonia and drug reactions. I love my Mom to death but I am exhausted. I have family that suggested we relocate here because I felt I could no longer do it alone and they said they could help if we were here. Well 2 years after relocating 1200 miles for support all we get are occasional short visits to drop off a meal when I work the late shift. My health is getting worse and was just diagnosed with Lupus. My Doctor told me I need to have my Mom go stay with family or in a nursing home for 2 months to give me a break. She said stress aggrevates my condition. I have asked for help from family before to only get an occasional visit or meal drop off. Long story shorter...Brother said they can not take her that if I cant do it she needs to go to Nursing Home. He minimized and questioned what I do for her and made me feel like crap. But I was the one at the hospital with Mom when she had emergency spinal surgery while he and his wife went to a car show. Sorry for all the details very frustrated, hurt and angry that I have to do this alone even now that I am not well.
I think this is a good read I have done respite before and I enjoyed the break. My mom is the one who thinks I do not need it? She thinks well you go out ( to the store get meds ect) but It is a very short time and I have to come back home to take of you: dinner, getting you ready for bed ect....I am plannig another respite for me when the weather breaks to go some where no cooking cleaning taking care ot business ect...It will all be what I want to do .....for about a week....I will let you all know. Peace to all of us caregivers and god bless.....Purplerain
87 Comments
First Oldest
First
Need a Break from Caregiving? Avoid Burnout, Find Respite Care
I am not complaining, I am stating facts; for which I know we are not alone. Elder affordable care in this country, or lack of, is disgraceful, compared to other free countries in the world. Being the wealthiest country in the world, this lack of affordable elder care speaks volumes. We could have dumped my mother in a home 11 years ago and walked away, but did not. Caretakers who take responsibility should be recognized and assisted to prevent burnout. It's past time this country's government allocate funds for this purpose for it's elder citizens that did their part their whole life and now need well deserved assistance.
We have already had a home health evaluation done on them, and they were told that it is not safe for them to do everything on their own and they either need to hire someone to come in and do stuff or they need to go to a nursing home. The Eval. report was given to their doctors, who told them the same thing. She basically said the doctors are quacks and don't know what they are talking about, she can do just fine at home. Unfortunately, you cannot force them to get help or go to a home, until a tragedy happens, at which time I will get the blame for not being there 24/7. I have small children at home I would love to spend time with. I do not mind helping mom and dad out once or twice a week. But when they want something every day and then tell me I don't do enough, and I'm overcharging them for their groceries (for which I give them a receipt, and buy my own separately) and accuse me of stuff, and say they refuse to pay someone $10 an hour to do stuff I can do for free. I just can't deal with the stress of it all anymore.
For everything your parents have given or loaned to you over the years did you sign any document agreeing to repay them? if you you did not there is no way anyone could prove it was more than a gift such as is the case with money provided to children by many parents. The relationship between your parents is their business alone and has clearly gone on for many years so there is no way for someone to influence that. Mom has her means of getting her way and Dad lets her. You may need to have a tlk with adult protective services to see if they can intervene because clearly the parents need help and without it would be unsafe. You don't need to tell APS about the parents previous moneyary contributions if there is no proof they were anything but a gift. have you kept up your part of the agreement to repay the money loaned for your mortgage? If not that is either a matter for either your conscience or for legal intervention either by the parent possibly assisted by your brother. Think about hit. We are sympathetic to peoples situations but not here to encourage those who truly do owe their parents a debt. They helped you in your time of need now they have needs whether they are being realistic or not.
Tell your brother to go ahead and sue you. It doesn't sound like you owe him any money so I can't imagine what grounds he has, but let him spend money for a lawyer to tell him that.
Your parents loaned you a certain amount of money. Your dad said staying in town and helping them would cancel the debt. I don't imagine any of this is in writing, is it? What if you put something in writing now? What if you had an Elder Law attorney draw up an agreement saying what you are doing for them and how much of your indebtedness this cancels each month?
The contract could say you transport them to up to 5 appointments a month, that you do lawn care twice a month, etc. etc -- whatever is within your capabilities and energy level. You get the going hourly rate for these things, but it is applied directly to your loan. If it isn't in the contract (such as laundry or housecleaning) you don't do it.
I think it is too bad you didn't take the higher-paying job out of town. And I think it is sad that a legal document may be needed here. But you can't count on your mother or brother to treat you fairly, and while your father seems to be more realistic you can't count on him standing up for you. So, put it in writing.
As for your mother expecting you to pay them back for college ... good luck with that, lady!
So to answer your question, how does she refuse help? she won't let them in!
Mom and dad have their own house, we do not live with them.
Mom lent us some money a few years ago to help with some of our medical bills. In order to be able to repay them, I was going to take a higher paying job out of town, but dad started crying saying I had to stay in town and help take care of them. He said if we stayed in town to do that, then that would be better than repaying them with money. He begged and pleaded, so I caved in. I guess I should have left then.
As for my brother threatening to sue, mom is telling him that she gave us lots and lots of money and we won't repay her and we won't do a damn thing to help her (even though we are the only ones that help her). She is even telling me now I have to pay back what she paid for me to go to college, 30 years ago, on top of every cent she ever spent on me my whole life.
Is your father at home with her? Doesn't he get a say in who comes into the house?
What on earth would be the grounds for your brother suing you? Do you have some kind of an agreement about what things you will do? Are you living with your mother?
More information would allow us to be more specific, but basically it comes down to this: You may not be able to control the decisions your mother makes, but you can control the decisions you make. She can decide not to allow a housekeeper in, and you can decide not to do housecleaning. Why should Mom let strangers in when she has you? By giving in you are enabling her demanding behavior.
I really can't figure out where your brother is coming from. Please give more details.
If no other family member cares enough to take her for a couple of months then the answer is respite in a nursing home for Mom. What happens if you are hospitalized with the lupus?