Elderly parents will not allow outside help. I'm getting burned out. What can I do?
Been taking care of elderly parents for 6 months now. Getting burned out as they demand about 2 or more hours a day and I work nights. They refuse to let anyone else help them. What can I do?
FarmerFred, what you are going through I am going through something similar with my parents [92 and 96]. One thing a therapist told me, remember it is your parents decision to stay in their own home instead of going to a retirement community.... therefore, they must take on the responsibilities that come with that choice, and not let it fall onto you.
This year I finally had to say *no* to many of my parents request. Such as driving them for the past 5 years, got me quite frazzled. Currently I only drive them to doctor appointments and to pick up their groceries. Anything extra will be at *my* suggesting, not theirs.
My parents are bored at their house.... well, I remind myself its their choice to keep living there. At a retirement community they could make new friends.
Dad will fall every now and then. He refused to get a fall alert button. Last time Dad laid in the dirt and leaves for a half hour before anyone saw him there. Think he would have learned from that.
As for groceries, I use to take Mom grocery shopping, became a 2 hour ordeal. So now I order groceries on-line as the local store offers such service.... all I need to do is drive up to the curb when the order is ready or the store can deliver to the house for a fee. I get my own groceries that way, too.
Good luck... parents have a way of making us feel guilty.... [sigh].
Fred, you're overwhelmed right now. You need to take some down time and sort out the issues and plan how you go forward. But summing them up, this is what I see:
1. Your mother is controlling the situation, your father and you. This is not a healthy situation for anyone.
2. Your mother's actions could result in negative ramifications for everyone involved, especially your father.
3. Some changes absolutely need to be made, but your mother is unwilling to do so.
4. If the family doesn't addess changes, someone from the outside may step in and do so. It's better if the family does it.
5. You're conflicted and torn, as many of us are, between wanting to see the right things done, parental loyalty and love, and the family dynamics. Until you can see past that, and see clearly that you have to do something, it will be hard to move forward.
6. Unfortunately, you seem to be the most concerned, and it will be up to you to initiate the changes.
FreqFlyer, I think that sometimes the knowledge that older folks can't do what they used to do is harder than we can imagine, and may also be a generational gap issue. These were people who frequently worked at hard physical jobs; their household tasks were harder as they didn't have all the appliances we have today (I remember washing clothes with a ringer washer), and the physical decline is all that much more palpable.
When the Millenial generation reaches our parents' age, they'll probably still be able to play with their wireless and electronic devices, albeit a bit slower if their brains slown down. But the physicality of life in the 1930s and forward isn't a part of life for many today.
From your description it does sound as if your mother still intends to work as hard caring for your father as she did for years. It is touching though that the slept on the sofa and spends so much time protecting him, including from "strangers"!
I used to think this was a male issue, but your post made me think it's more of a generational issue.
If I could think right now of something that would help her feel she's caring for him but still allow others to help, I would offer that suggestion. We haven't completely gotten past that issue ourselves.
GardenArtist, oh my gosh, I just had an aha moment when you posted "(a) a point at which my father could no longer do things he'd done before, and outside help only emphasized it".... that relates to my Mom. Back 5 years ago when my Dad had a mild heart attack at 87, the hospital suggested he go to a rehab center to regain his strength.... my Mom said *no*, that she could care for him [she was 91 at the time].
It wasn't until we got Dad home from the hospital that we realized that Mom didn't realize that Dad needed more help then she could give. In fact, when we walked Dad into the house he was too winded to even walk to his recliner, so we moved his recliner closer to him.... Mom was not happy, she didn't want that recliner moved... we moved it anyway. Dad had to sleep there for a month because he couldn't go up the stairs... but Mom did sleep on the sofa to be near him.
Any time a visiting Nurse or Physical Therapy person came to my parents house, Mom would sit and have a pout on her face and be snippy. She didn't like strangers in the house, and she thought she could be a better nurse even though she never had any training.... [sigh].
Any time we mentioned that Dad had a heart attack, Mom would deny it. I really believe if she thought he really did have a heart attack that people would think it was her fault for not taking better care of him. She's always took excellent care of Dad, forcing him to go to doctors when he wouldn't go, etc.
My wife started this account for me God bless her. I have already been sucked into this bottomless whirlpool for 6 months. I have always done what was asked. I am sitting here writing with tears running down my face. I see no end in sight. I do not get to spend much or any quality time with my mom and dad or my family anymore. I feel I am just errand boy. I enjoyed reading all of your advice. I know I need to do many things different and try to not feel guilty about not doing them, and tell my parents to start planning ahead and fend for themseleves. Call 911 when they fall. I know that in a matter of months all of this will happen again and another whirlpool. My kids are calling to go play with them. I am going this time please leave and helpful advice and thank you.
Fred, has your mother always been this demanding and controlling or does this represent a change of behavior?
If the former, unfortunately patterns have been set and it may be that your father has acquiesced over the years just because it's the easiest thing to do. That's not a criticism of him - just logic. It's hard to constantly be in battle with one's spouse.
I agree with ba8alou and Pam. You'll have to set boundaries, difficult as it might be. There's no way you can handle a situation like this and manage to care for your own family as well. And sooner or later your wife and children will suffer.
I also think calling 911 after falls is an excellent idea, for 2 reasons:
(1) Documentation will be created as to the situation in the house, and
(2) It will provide them with safely trained medical assistance to get up. Helping someone up after a fall can be dangerous if you have no medical training as you may not recognize broken bones or other injuries.
That might the first issue on which to take a stand.
You wrote that your mother "forbids" a ramp from being built. Is she the head of the household? Is she supporting your father? I'm not sure I understand how and why she's established such an iron-handed control over the house and your father. That's not a criticism but rather a query.
You probably realize that this position on a ramp isn't logical. While I hate to raise the dementia issue, if this is a recent behavior change, perhaps that's a cause.
I assume your father is getting home care after discharge from the nursing home. Try to arrange a private conversation with the nurse and social worker and explain the situation. Both can make suggestions on ramp and mobility issues and document if/when your mother interferes. This may help if you have to find a placement for her, as it sounds as though her behavior is getting out of control and it will affect your father very quickly.
As to the time change for appointments, the next time she pulls this, tell her you're so sorry but you've already made plans based on the time she stated and that you're unable to change your schedule. Then walk out or hang up the phone.
It's easy for us to give advice, and I know it will be difficult for you since you're the one on the hot spot. The steps you have to take are going to be challenging emotionally as your mother will probably make you feel like a bad son, selfish, unworthy and unappreciative. It's all part of the game.
If you can find a support group in your area, that would certainly help.
But please, listen to the other posters and take their advice. You'll be sucked into this bottomless whirlpool if you don't.
And stop taking the phone calls! If she says 10 and you can make it.. show up. if she changes the time.. you were there already. This is manipulation. If Dad needs a ramp and an alert system, ask her why she objects? Does she not want him to be safe?
Back away from this picture! The next time they fall and call, YOU call 911. And when they call from the hospital to pick them up, you say NO. And you stand your ground. Your parents need professional help at this point. This will kill you. I mean that very, very seriously.
Mother is very demanding. Father just came home today after being in nursing home for 6 months. They both use walkers and cannot get in or out of the house without help due to stairs. She refuses to even make grocery lists and wants everything done at her convenience. Father wants a ramp built but mother says no way, she will chop it up with an axe. She forbids a ramp from ever being built. Father wants a medical alert button because they both fall down a lot and cannot get up until I go over and pick them up. Mother says no way, she will break it and throw it away. She says she wants to go somewhere tomorrow at 10 am. You call at 9:30 and she says she doesn't want to go until 1pm. Then she will call at 12 and yell at you because you haven't picked her up yet. I have my own family to take care of (10 kids ages 1-23) plus work nights. The older kids who can drive try to help out, but they have work and school too.
I had that problem as well. I was too tired to do any work of my own and felt torn between obligations, not to mention chronic fatigue.
After numerous rejections for outside help, I decided that I was going to set limits on what I did, and decided what I would do and what I would not do. These days, some things just don't get done, but the important ones do.
You might start by listing everything you do for them, decide what's critical and mandatory (medical appointments, food, etc.) and what could be done by others if your parents would allow it. Explain sweetly to them that you're burning out, almost ill (or already there) and just can't do everything, so choices have to be made.
They may not fully comprehend immediately what that means, so you'll have to be firm.
It would help if lists of tasks could be prepared weekly or so, then you could allocate them across your free time as well as advise your parents which things aren't going to get done.
Be prepared for them to manipulate and still ask for nonessential tasks, but be firm. A burned out caregiver is only going to get sick at one time or another, and then there could be a real crisis, so you're averting that by acting now.
I raised this issue when I took the Savvy Caregiver class and eventually thought that perhaps outside help represented
(a) a point at which my father could no longer do things he'd done before, and outside help only emphasized it;
(b) entry if not perceived intrusion into his own space by strangers to do things he used to do;
(c) expenditure of funds that he wanted to conserve.
I'm still working on addressing those issues as there are still things that need to be done that he doesn't want me to do because I'm not a man. Seriously.
Good luck. I know this isn't an easy step forward.
11 Answers
Helpful Newest
First Oldest
First
This year I finally had to say *no* to many of my parents request. Such as driving them for the past 5 years, got me quite frazzled. Currently I only drive them to doctor appointments and to pick up their groceries. Anything extra will be at *my* suggesting, not theirs.
My parents are bored at their house.... well, I remind myself its their choice to keep living there. At a retirement community they could make new friends.
Dad will fall every now and then. He refused to get a fall alert button. Last time Dad laid in the dirt and leaves for a half hour before anyone saw him there. Think he would have learned from that.
As for groceries, I use to take Mom grocery shopping, became a 2 hour ordeal. So now I order groceries on-line as the local store offers such service.... all I need to do is drive up to the curb when the order is ready or the store can deliver to the house for a fee. I get my own groceries that way, too.
Good luck... parents have a way of making us feel guilty.... [sigh].
ADVERTISEMENT
1. Your mother is controlling the situation, your father and you. This is not a healthy situation for anyone.
2. Your mother's actions could result in negative ramifications for everyone involved, especially your father.
3. Some changes absolutely need to be made, but your mother is unwilling to do so.
4. If the family doesn't addess changes, someone from the outside may step in and do so. It's better if the family does it.
5. You're conflicted and torn, as many of us are, between wanting to see the right things done, parental loyalty and love, and the family dynamics. Until you can see past that, and see clearly that you have to do something, it will be hard to move forward.
6. Unfortunately, you seem to be the most concerned, and it will be up to you to initiate the changes.
When the Millenial generation reaches our parents' age, they'll probably still be able to play with their wireless and electronic devices, albeit a bit slower if their brains slown down. But the physicality of life in the 1930s and forward isn't a part of life for many today.
From your description it does sound as if your mother still intends to work as hard caring for your father as she did for years. It is touching though that the slept on the sofa and spends so much time protecting him, including from "strangers"!
I used to think this was a male issue, but your post made me think it's more of a generational issue.
If I could think right now of something that would help her feel she's caring for him but still allow others to help, I would offer that suggestion. We haven't completely gotten past that issue ourselves.
It wasn't until we got Dad home from the hospital that we realized that Mom didn't realize that Dad needed more help then she could give. In fact, when we walked Dad into the house he was too winded to even walk to his recliner, so we moved his recliner closer to him.... Mom was not happy, she didn't want that recliner moved... we moved it anyway. Dad had to sleep there for a month because he couldn't go up the stairs... but Mom did sleep on the sofa to be near him.
Any time a visiting Nurse or Physical Therapy person came to my parents house, Mom would sit and have a pout on her face and be snippy. She didn't like strangers in the house, and she thought she could be a better nurse even though she never had any training.... [sigh].
Any time we mentioned that Dad had a heart attack, Mom would deny it. I really believe if she thought he really did have a heart attack that people would think it was her fault for not taking better care of him. She's always took excellent care of Dad, forcing him to go to doctors when he wouldn't go, etc.
If the former, unfortunately patterns have been set and it may be that your father has acquiesced over the years just because it's the easiest thing to do. That's not a criticism of him - just logic. It's hard to constantly be in battle with one's spouse.
I agree with ba8alou and Pam. You'll have to set boundaries, difficult as it might be. There's no way you can handle a situation like this and manage to care for your own family as well. And sooner or later your wife and children will suffer.
I also think calling 911 after falls is an excellent idea, for 2 reasons:
(1) Documentation will be created as to the situation in the house, and
(2) It will provide them with safely trained medical assistance to get up. Helping someone up after a fall can be dangerous if you have no medical training as you may not recognize broken bones or other injuries.
That might the first issue on which to take a stand.
You wrote that your mother "forbids" a ramp from being built. Is she the head of the household? Is she supporting your father? I'm not sure I understand how and why she's established such an iron-handed control over the house and your father. That's not a criticism but rather a query.
You probably realize that this position on a ramp isn't logical. While I hate to raise the dementia issue, if this is a recent behavior change, perhaps that's a cause.
I assume your father is getting home care after discharge from the nursing home. Try to arrange a private conversation with the nurse and social worker and explain the situation. Both can make suggestions on ramp and mobility issues and document if/when your mother interferes. This may help if you have to find a placement for her, as it sounds as though her behavior is getting out of control and it will affect your father very quickly.
As to the time change for appointments, the next time she pulls this, tell her you're so sorry but you've already made plans based on the time she stated and that you're unable to change your schedule. Then walk out or hang up the phone.
It's easy for us to give advice, and I know it will be difficult for you since you're the one on the hot spot. The steps you have to take are going to be challenging emotionally as your mother will probably make you feel like a bad son, selfish, unworthy and unappreciative. It's all part of the game.
If you can find a support group in your area, that would certainly help.
But please, listen to the other posters and take their advice. You'll be sucked into this bottomless whirlpool if you don't.
After numerous rejections for outside help, I decided that I was going to set limits on what I did, and decided what I would do and what I would not do. These days, some things just don't get done, but the important ones do.
You might start by listing everything you do for them, decide what's critical and mandatory (medical appointments, food, etc.) and what could be done by others if your parents would allow it. Explain sweetly to them that you're burning out, almost ill (or already there) and just can't do everything, so choices have to be made.
They may not fully comprehend immediately what that means, so you'll have to be firm.
It would help if lists of tasks could be prepared weekly or so, then you could allocate them across your free time as well as advise your parents which things aren't going to get done.
Be prepared for them to manipulate and still ask for nonessential tasks, but be firm. A burned out caregiver is only going to get sick at one time or another, and then there could be a real crisis, so you're averting that by acting now.
I raised this issue when I took the Savvy Caregiver class and eventually thought that perhaps outside help represented
(a) a point at which my father could no longer do things he'd done before, and outside help only emphasized it;
(b) entry if not perceived intrusion into his own space by strangers to do things he used to do;
(c) expenditure of funds that he wanted to conserve.
I'm still working on addressing those issues as there are still things that need to be done that he doesn't want me to do because I'm not a man. Seriously.
Good luck. I know this isn't an easy step forward.