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.
You will be on your way with your husband soon, your mum will continue to have fits. I am not sure that she can do differently at this point. I was told after mother's diagnosis that at her age there was no point in treatment. So you just have to learn to deal with it so you are not harmed any more. That is the most important thing for you -to keep your self safe and away from stress as much as possible and doing things with your time and energy that are good for you and your hub. And it is possible to do that far more than you have been doing. Believe me, your mum will survive just fine without you being there so much.
Know my prayers are with you are you grow stronger and let go of the false guilt. I had friends who urged me in the right direction too and am so thankful for them and people on this forum who helped me and encouraged me through the very difficult last years of mother's life.
Again I am sorry for what you went through with your brother and look forward to your sharing it. It is healing to share our tough times. I am still learning about the effects my sister had on me and wondering why it took so long for me to realize what a destructive force she was in my life.
((((((hugs)))) and love to you, Max. 💗
Your post have made me think of the Wizard of Oz as you have been trying to get home and so many have helped but ultimately it was all up to you. So put on some ruby red shoes. There is truly no place like home.
BIL and SIL moved in with my FIL several years ago because they fell on hard times. It was supposed to be very temporary. He is nearly 90, He was in his early/mid 80s at the time. He was fairly independent - could do the vast majority of his ADLs no problem. SIL felt obligated to jump when he said how high because he gave them a roof over their heads (FIL is a raging narcissist and was horribly abusive in every way you can be to both SIL and my DH when they were growing up). Even still, they both love him and want his approval because - well he is a narcissist and he conditioned them to - but also because he is their dad and regardless of the fact that he's a terrible dad, he's the one they've got and they keep hoping that by some miracle, he will change some day. Sigh.
They moved in and almost immediately he started to go downhill. Stopped doing things for himself. I begged SIL to set boundaries. Stop bending over backwards to meet his every need. Anytime she did something once for him, it became her job. He literally told a doctor "Why should I do it myself when they can do it for me?" Within less than 18 months he had gone from 99% independent to 99% dependent. Mostly because she literally could not tell her father no. He had conditioned her to never say no. That it was disrespectful.
He is a 300lb man. He is now almost completely immobile. He can get between the bathroom and his bed but if we gave him a bedside toilet he would be thrilled. SIL drew the line because she would be in the floor passed out. But literally everything he needs she does. Cooks, cleans, medications, laundry. He now has a bath aide that comes 3X a week. She has now dedicated her life to taking care of him. That temporary situation? Yeah...she backed herself into a corner. We have been begging them to make an exit plan and go and we will help them find a place for him to live. He's in rehab right now. He's coming back home. We are glad he was able to recover from what put him there, but if DH and I had been given our way, he wouldn't have gone home, he would have gone to a Skilled Nursing Facility so they could be free.
I love my SIL but she is co-dependent. She is a product of the way she was raised. DH was raised to be the provider. She was raised to be the homemaker and the caregiver. Now inherently there is nothing wrong with the traditional roles. However, you have to factor in the narcissism. It was layered with a chauvinistic quality that FIL believes SIL is his indentured servant. She cannot walk away from him. She is indebted to him. And he has gotten inside of her head. She feels that way too. But she is also still trying to get his approval.
With all due respect to you. I feel like there may be a little bit of that dynamic between you and your mom. You love her, I know you do. But in some ways you are trying so hard to make her happy, to get her approval. Maybe I'm wrong. But sometimes we have to find that approval in ourselves. My FIL never gave his approval. Not once to DH or SIL. And that is why they still to this day are begging for it. And trying so hard to find even a glimmer of it. It is never going to be there because he just isn't capable of it. You talk about how your parents have spent years bailing your brother out and paying his way. And yet here you and your DH are paying THEIR mortgage and running yourselves ragged for them. Where does it end?
I get the sense that your mother is never going to be content until you are surgically attached to her side providing for all of her needs. When is it your turn?
Yes max. You are becoming immune to her tantrums. Good.
”So long, farewell, auf wiedersehen, goodbye! I flit, I float, I fleetly flee, I FLY!”
You say mom is "not being nice"?
Are you STILL expecting her behavior to change?
It won't. Your mom is only interested in getting HER needs met. She doesn't care about what YOU need, despite what she might tell you.
Please keep putting your physical, emotional and financial needs first.
AND if mom or dad has an "emergency" tonight, please call 911 and continue with your plans to leave.
AND LEAVING in the AM.
Hi-5 🤚
You CAN turn a conversation. You can hold your tongue. You can speak your mind.
You can click your heels & go home too. You didn't need a wizard afterall, you had the power this whole time, just didn't know it 👠👠
Changing the subject worked very well, as did walking away didn't it?
You must be feeling good about you and that is so important!
I am so happy that you are reunited with your husband! 😊
Keep it up, go home and start researching home health agencies in your parents' area.
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.
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.
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.
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.
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?
Or...did you keep on going back to your home and make a stand against their unrealistic and unfair expectations of you?
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.
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.
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.
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.
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.