My husband and I have been with my 90 year old parents since before Thanksgiving. It is now January 2nd. My husband had to go home to work in another state. My mom got a respiratory infection and was sent to the hospital due to fluid in her extremities and low oxygen. She’s now on oxygen. I stayed behind to care for her and help out my Dad. I thought that she would get better in a few weeks. It’s not the oxygen problem that she can’t deal with when I leave, it’s that she can’t reach back to wipe her rear because she’s too heavy in her stomach. Granted she’s sitting on a high toilet seat with grab bars, but even before we got that, she didn’t want to wipe herself. Then she wants me to bring her a bed pan into the kitchen while my Dad was cooking in the kitchen, also outside on the common area balcony in front of her door, in the living room - to urinate instead of walking to the bathroom. My Dad said she gets out of bed on her own, wipes herself upfront and gets back into bed by herself. When my wonderful husband told her Mom you need to start trying to become independent again like you were, she went crazy on him and told me go home to your husband. He is the most compassionate person in the world. My mom said to him I want to thank you for you giving up your wife - what does this mean? For how long does she think I’m going to stay around just to wipe her? She said I would never have your father to that. I don’t like to use my father’s car so I’m trapped. I also brought my puppy who needs exercise. She told me don’t be long walking him. Also, she’s supposed to be losing weight and she’s eating cookies, etc. So why do I have to wipe her if she can’t reach back because she’s heavy and she’s not helping herself? My husband and I are in our 60’s and about to retire and she won’t even walk to help herself! It’s so unfair! I bought her a tool to help her reach back and she doesn’t want to try it. If she can’t wipe herself now, I can’t just live with her to just stay around to wipe her. So sorry everyone! PS I had breast cancer and need to go to my doctors too.
So what?
(That is a quote from NeedsHelpWithMom's therapist)
Your parents need help. They need far more help than YOU can provide. But they need you a heck of a lot more than you need them.
Next time your mother abuses you verbally, screams or otherwise shows you disrespect, ask her what her plan is if you were to turn and walk away forever. "Because, mom, if you treat me like that, I'm walking away".
Do not say that unless you mean it. My DH used this on his mom (she had another child who accepted the abuse as his lot in life). My DH walked away and has never had a moment of regret.
Your last line is so helpful. Everyone who has ever struggled with their decision to walk away could learn a lesson from your DH.
“My DH walked away and never had a moment of regret.”
People need to know that it is okay on the other side of caregiving. They don’t have to be consumed with guilt. I think for those raised in FOG, we believed that the guilt will eat us alive if we walk away.
In reality, it is a huge relief to walk away and there is nothing to regret.
The time we spent in caregiving we can never get back. The things that we missed out on are gone. Those are my regrets.
Life is short and sometimes it is a huge balancing act. When it is out of balance, we suffer horribly.
Max, YOU are so right! I am SO glad you see it clearly now.
Your parents' caretaking plan all along is you. You be the nurse, the maid, the cook, the azz wiper, the shopper, the driver, etc., live-in, 24/7/365.
Instead of "if we were killed on this highway...what plan do they have?", replace it with:
Mom, dad, I need to take care of my health problems. I can't be your caregiver, what's your plan? (Repeat again and again as necessary.)
Learn to manage from afar. You can do it. Everyone has emergencies. However, what is determined as an emergency is different amongst us. By learning to manage from afar, you will be able to save your strength and energy for the true emergencies.
Congrats to you and your husband to finally just walking out. Please take care of yourself.
P.S. Renting is a great way to help with the money outflow. It is even better if you can get a positive monthly cashflow without including the depreciation.
It’s great hearing you speak about going to Europe!
When you get there, let us know and I’ll open a bottle of wine to share a toast with you!
Simplify.
Drive the car home. To YOUR home (not theirs).
Telephones are wonderful things. Use them.
If parents ring with an emergency, tell them to hang up & call 911.
If/when they land in hospital, you will have time to arrange a call to their medical team. About their condition, about discharge plans, about their potential need of a Social Worker.
Drive home. Unpack. Put your feet into you OWN life again.
can imagine the screaming that's going to happen.
Focus on getting home.
Then on some sensible research & action.
Have you heard of the 6 thinking hats? I love them! Time to try on some new hats!! Less red hat. More white hat.
Max, this IS IT! This is when Mom and Dad have to finally see that they can't continue like this. I am going to be blunt. What would they have done if you had died. Your husband cannot be expected to take on that burden, its not his parents. You have had a serious scare. YOUR health is on the line. Why should ur husband loose you because of the selfishness of your parents. Its time that you parents are told they need to go into AL. Sell the house to pay for it. But you no longer can be at their beck and call. They need care that you no longer can give. If they loved you they would let you have a life. And do not pay their way. When the money runs out they can go into LTC together.
". I felt my chest exploding. I can't breathe!" Do you realize that chemo can effect the heart. What you are feeling is anxiety and not good. You also are worrying about something that may not happen. No need to worry because your answer should be NO and your husband should be there to back you up. NO Dad you cannot recuperate here. NO Dad you can't move in with us because...we will not be here all year long. NO Dad, caring for you and Mom stresses me out. Getting too old to deal with you and your problems, you have to figure it out on your own. (Senior caring for a Senior) If you finally go into AL we can help you with the move but you have to do the work.
If you get any calls from SWs, you tell them you cannot care for your parents the way they want. You don't live in the same State. You are a cancer survivor and the stress causes you anxiety, which u don't need. You have tried but they want it their way. No living with you is not an option. What they need is someone who can find them the resources they need because you can no longer be that resource. Again the answer is NO! You have finally throw you hands in the air and say "I am done!"
I am actually getting anxiety writing this. I am so happy my parents were not like this. There comes a time you have to stop banging your head against the wall. Its called tough love even with 90 yr old people. If you ever feel Mom and Dad need help, you call APS and allow them to take over. They have brought this on themselves by being to stubborn to see what they need to do. Burnt says: "Nothing will get an elder a one-way ticket to a nursing home faster than being stubborn".
I know that it seems like everything is up in the air right now but one thing is for certain. You aren’t the one to do the heavy lifting.
Your health is equally important to your parents. Even if you didn’t have health issues, your life is just as important as theirs.
It may appear as if there is no end in sight, which is extremely unnerving.
There is an end in sight. It does require that your parents accept that they must enter a facility. They don’t have money for private caregivers and you can’t accept that responsibility any longer.
Your husband is confused right now. He is loving and compassionate like you are. Please explain to him that a nursing home is the ONLY solution for this situation.
Maybe you see your parents as young at heart. In reality, your parents are old and will only require more care as time goes by. They are never going to be able to be independent again. You know this.
Giving all their money to your abusive brother was a plan?
It sounds to me like like your parents have basically brainwashed you.
From what you've written, they sound thoughtless, selfish, manipulative and deeply abusive to you.
I'm just going by your description of their behavior.
YOU are allowed to say "No, I can't possibly do that".
You love your parents. THAT doesn't mean that you have to say yes to everything they ask.
Your parents (not you) have made some really poor choices in life and they have balanced their well-being on your and your husband's backs. That needs to stop, now.
They presumably have Social Security and are eligible for Medicaid. They and you need to investigate how to navigate the social services system in Florida because that's where they live. If they want to move (on THEIR dime) to your area, they will need to investigate what services are available THERE.
You are their consultant and manager, NOT their caregiver. You are a senior yourself and a cancer patient. Your parents need whatever professional care THEY can afford.
Start tomorrow by calling the local Area Agency on Aging in their county in Florida to find out how to get them help. Just remember that one of the choices is not YOU.
If you think mom shouldn't be left alone, tell the hospital social worker that mom needs emergency care. They can arrange that.
Or perhaps mom CAN be left alone if someone sends food and a neighbor checks in once a day.
After this is over, you call the local Area Agency on Aging and get a Needs Assessment.
When/if you want to know about that, let us know.
It was the firm, yet still compassionate postings that I responded most to. I completely shut down when I saw insensitive, harsh comments.
Long time caregivers are broken and the very last thing that they need, even if done with good intentions, is to be beaten up by others in a caregiver support group.
It’s extremely difficult to break free of FOG. We need time to process the information given. We need encouragement, which is NOT the same as coddling.
Feeling empowered is what makes it possible to take on the necessary steps to make forward. I love to see others telling a poster that they ‘can’ do this one step at a time.
Let me give an example of something. I have never been overweight. I am naturally thin and have been extremely active during my lifetime.
I try very hard to empathize with people who struggle with their weight. Everyone has their own specific metabolism.
People tell me, “You don’t know what it’s like to be overweight. You have always been stick thin.” They are correct, I don’t know what it’s like.
Some people eat when stressed, others like me, aren’t big eaters to begin with and cannot eat when stressed. It makes me nauseous if I try to eat if I am upset. My appetite goes away. Some people gain weight during caregiving. I lost weight that I couldn’t afford to lose.
Perhaps I felt like I couldn’t control certain things in my life but the one thing that I could control was food, so I rebelled by not eating. Who knows? Eating disorders weren’t discussed when I was young.
But, I do try to be very understanding of people who eat to find comfort. I don’t call them pigs or other derogatory things.
So, if you haven’t struggled with feeling like you had to do the hands on caregiving, then good for you! But please be aware that not everyone is the same. Some of us take longer to catch up to speed.
Look at the person who developed 409 cleaner. Do you know why that is the name of the product? It’s because he failed 408 times. He succeeded on the 409th try and that is what is most important.
Please note that I am not ragging on anyone for their contributions to this forum. I have slipped as well, after moving forward and at times I have also been impatient with others.
I work hard at catching my negative behavior and bite my tongue so I won’t be offensive and counter productive. I prefer to offer firm but compassionate advice.
I remember debating with her about, ‘how much I loved my mom.’ Barb didn’t miss a beat by telling me that my love for my mother had nothing to do with my irrational behavior.
No one had ever explained this to me like that before. Her words clicked in my ‘dense’ head! I had suddenly realized that I equated service with love. I had no idea that they were separate issues. I believed that there couldn’t be ‘love’ without my service.
I was totally wrong about so many things. My responsibility was to oversee that my mom was cared for. Sadly, I felt that I was being neglectful and passing the buck if I wasn’t doing the hands on care myself. It was such a relief to finally understand the truth!
It’s painful to remember these things but they are true. I don’t know if Barb and others remember how terribly confused that I was like I do. I’m certainly glad that no one gave up on me. I was delusional and lost.
Barb explained FOG, fear, obligation and guilt. I didn’t know about this either. Let’s just say that I desperately needed to be enlightened!
We can empathize with our parents being afraid. Everyone is afraid when faced with health issues. The problem arises when the only thing that we have shown them is that we are ‘always’ going to be there to take care of everything at the cost of neglecting ourselves. That’s on us!
All is not lost though, as hard as it is emotionally for some of us, we can turn things around to find a proper balance in our lives. It’s the best thing for everyone, the parents and children.
Both love & saying no/change doesn't seem to co-exist for them.
I am researching today (again) where the line is, between freedom of choice & self-neglect.
Medical emergencies of various levels of "need" will happen with increasing frequency.
There needs to be a plan for dealing with these.
The plan needs to take financial constraints into account.
It needs to be based on facts, not emotions, guilt, panic and manipulative behavior.
Just some food for thought, Max.
Wishing you well.
Max, please take note of this. Make sure your parents have a plan.
Or...did you keep on going back to your home and make a stand against their unrealistic and unfair expectations of you?
Take over this looming train wreck & drive safely.
Stay on the train as it de-rails.
Get off the train & alert others.
What's the decision?
Max, please try to separate the idea that you love your mom from the idea (which seems connected to you) that you must show up on demand for her medical crises.
For my family, things started going downhill when mom was 88. Dad had been dead for 16 years but mom was managing fine...until she wasn't.
We simply couldn't drop everything (jobs, mortgage payments) to rush to her side with increasing frequency. We moved her into an Independent Living Facility where there was staff around 24/7 and that worked for 2 years.
Mom had a stroke and it was pretty clear that she needed to be in a NH and that she needed to be very close to one of us. We did the research and the best option was moving her 10 minutes from one brother. It made for more travel for the other 2 of us, but it made sense for SOMEONE to be able to get to the hospital quickly in an emergency.
No parent should expect their adult child to be their only source of care. It's selfish. Similarly, no adult child should expect to be supported by their elderly parents.
Since both situations exist in your family, I'm going to suggest again that you START by finding a therapist who can help you set some realistic boundaries with tour family so that YOUR life and health don't get destroyed.
Again, this is not about how much or whether you love mom and dad. And remember that no reasonable person should say "if you love me you would.... ".
That's manipulation, pure and simple.
Sooner or later, one of them will become seriously ill or will fall and a decision will need to be made about what level of care they need and where it will be delivered.
In many families, this situation occurs as a sudden crisis. Many times, an adult child swoops in and starts caregiving, trying to save the days and getting burned and and resentful in short order.
We have be trying to prepare you for this.
You need to have some answers ready--what rehabs are good. What home health agencies have good, reliable aides.
You need to start finding this stuff out NOW because the crisis is probably only a couple of weeks away and YOU need first and foremost to get back to your cancer treatment docs.
Your parents' lack of planning for their old age should not be reason for you to sacrifice your life and health.
Yes, we want our parents to be well cared for but if we are at the stage of being resentful or burned out, we aren’t doing them or ourselves any favors. Parents deserve to have a caregiver that isn’t overly tired and we deserve to have proper rest.
In a way, it’s like any other job. If we wake up everyday and hate going to work, it’s time to find another job or if we are at retirement age, then we should retire and let another person take over.
It can be tough to let go, even knowing that it is necessary. Transitional times are difficult. It isn’t until we get away from it that we realize how irrational our thinking was. Long time caregiving changes us in negative ways.
Some of us even felt like no one else could do as good of a job as we can. Not true! Some of us felt like we were the only ones to get our parents to do something. Also not true! Sometimes they actually listen to others better than us.
Bottom line is that it doesn’t have to be ‘us’ doing all of the heavy lifting.
I received great advice from many on this forum when I was struggling.
I remember asking this forum what to expect from the caregivers who came to help mom with Council on Aging. The best advice that I heard was, “Allow them to do their job! Don’t work along beside them. Get out of the house. Take a break!” I listened and it was wonderful to have that break.
Hi Max - thanks for the update. Glad you got away well. Enjoy your home. Make longer time between visits, less time with the parents. It gives them too a chance to develop their other relationships and interests and prepares them for your eventual retirement in Spain without them. It will lessen their focus on you. Keep lengthening the apron strings. Both you and your parents will be better off for that. Mother would never admit fault either - it was always someone else.
You have interesting names for your pets! I like ancient history too.
Your mother has you feeling as if YOU alone are keeping her alive. That if YOU walk away, she will surely perish. And that if you leave, it will be your fault if something happens to her. In addition to that - you mentioned that there are things that you and your husband won't be able to do because you have been funding THEIR mortgage (I'm not even sure how long). I will have to go back and read the post about your brother and everything they have done for him.
BUT....
You do realize that all you have been doing by funding their mortgage is indirectly funding your brother right?
All of this time your mother has been holding guilt over YOUR head, making you feel as if you can't do enough for her, you are paying their bills, you are running yourself ragged, you are spending so much time away from your husband, your husband is spending time running back and forth between your home and Florida....your BROTHER has been reaping the benefits. And they haven't blinked an eye at handing over money to him time and time again.
Has the situation ever been reversed? I know that they were wonderful loving parents. I'm not questioning that. And I'm sure that you know they would have helped you if you would have needed it. BUT, have YOU personally ever been in the position as an adult where you did need them and the tables were turned and they came to YOUR rescue? I am not trying to disparage them at all. I'm just wondering if you have always been the family savior your entire life?
I think sometimes we get into a certain role and feel like if we don't play that role that the entire dynamic will completely cave in. But the reality is that as long as YOU are the solution - they will never find another one. As long as you are willing to jump in the car and put your entire life on hold to come take care of them every single time they call - they won't hire a caregiver. And you will never get to enjoy just being their daughter.
Have you? Have you ever just been able to be their daughter? Or have you always been in this position of parenting your parents to some extent? Have you ever tried to say "Sorry mom, I just can't come this time. Here's the number of Visiting Angels, Home Instead, Care.com....they can send a caregiver out. Or the doctor can order rehab" Or do you feel like you would be so overwhelmed by guilt that you just wouldn't be able to do it?
Like I said, as long as you are their solution, they will never find another one. If you are ok with that, just disregard this message, but it doesn't seem like you are. But the only way that is going to change is if YOU change your behavior. They won't change theirs. It's too easy for them. NO is actually a complete sentence. But guilt is a strong motivator.
Once you and your husband are in the car (you CAN do this, don't let last minute emergencies stop you!) and you are away from the entire situation, I think you really need to give some thought to the next time. Because the next time is just around the corner. You know the phone is going to ring and you are going to be needed again soon. And you need to know what you are going to do. Because there is never going to be just a quick visit to spend some time with mom and dad for fun as long as you are the caregiver of choice.
Keep it up, go home and start researching home health agencies in your parents' area.