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My mom is 74 years old and has congestive heart failure and COPD. She is also in remission from lung cancer and is on pain medication for herniated discs in her back. She constantly battles edema in her legs and belly and has been in the hospital 8 times last year and 3 times so far this year for respitory failure. The fluid fills her lungs and they have to put her on IV's to help diurese her.


I have been her caregiver for the last 6 years and became her paid caregiver last December. She lives with me in my home with my 2 adult sons. We all have income coming in and don't struggle financially (currently). I'm the person who stays home and cleans and cooks and does the laundry for the family as well as the caregiving responsibilities for my mom. Meds, drs appointments, scheduling home health, bathing, shopping etc.


The problem is that she is very manipulative. She is of sound mind and actually has a masters degree in Social Work. She refuses to get out of her recliner and walk or restrict her fluid intake or put her legs up so help keep the fluid out of her legs. It gradually gets worse until she is so bloated she can't breathe and she crashes. I call the ambulance and they always admit her for at least a week.


Last January my eldest son told me that he was taking me to Las Vegas in June. He purchased my plane ticket and set up all of our accommodations. My mom was released from the hospital at the end of April and I told her she needed to do everything possible to stay healthy because I'm leaving for a week. I suggested putting her in a respite home for the week and she refused. My sister offered to let my mom stay with her and my mom declined saying she doesn't need a babysitter. She is totally expecting my other son to take care of her while I'm gone. Hes ok doing this as long as she is stable. The problem is I feel like she has done everything she could to not be ok. Shes been eating a lot of salty food, drinking more fluids then she should be and not walking at all. Her legs are now huge and swollen and they are on the verge of developing cellulitis. I feel like the moment I leave, she's going to have respitory failure and she knows she hasn't done anything to prevent this. I feel angry because I've told her I'm getting burned out and I need a few days for myself. She just makes statements about how much money I'm going to waste going on a vacation. I need advice. Do I still go? Or should I cancel my vacation? My sister said she will check on my mom while I'm gone.

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AndreaE, everyone is different when it comes to escaping from caregiving. Some can go away and have a wonderful time, come home all refreshed.... some can go away and would still be a wreck when they got home.

I remember one time taking a weekend off where my sig-other and I went away to this wonderful resort that we had been to many times before back when my parents would come along. The place was great, no phones or TV's in the rooms.... no cell service.... family style dining [all food organic]... and a lot of hiking trails.

Could I relax? NO !!! My parents [in their 90's and still lived in their house by themselves] insisted they would be alright. But I still was so worried. I would call their house 3 times a day to check on them. And every time sig and I came back from a hike, I was worried a note would be pin to our hotel door to call home.

That mini-vacation didn't help me at all. I just came back to the same routine, still overwhelmed and so tired.

You have positive reinforcements with your son and with your sister. Oh, your Mom may grumble. I think some of it is the adult/child dynamics where Mom thinks she knows best, and we are the kids and what do we know :P

Seize the moment !!
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If you are going to spend the entire vacation worrying, you will not be deceasing your caregiver stress, you will be multiplying it.  Maybe you need to take a very, very tiny vacation.  Spend a weekend at a motel or hotel that has special or unusual décor or offers amenities that you would enjoy.

Since my Mom and I had not had a vacation for 5+ years, we stayed at a motel that had a Mountain Cabin Retreat theme one weekend.  The building and rooms looked like they were made from logs.  There was a bear standing on its hind legs by the lobby's front door.  We felt like we were in a cabin in the Rocky Mountains similar to those that we stayed in while I was growing up.  We had a GREAT TIME!  (And we didn't have to drive far from home.  It was a vacation to remember.)

What are some of your favorite vacation memories?  Can you find a motel/hotel/spa close to home that you spend the weekend at?  Take baby steps and take "baby-size" vacations that allow you to run back to your Mom within a few hours if need be.

Good Luck!
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Isthisrealyreal May 2019
Sorry, I think that is playing right into moms manipulation.

Mom will be fine in the hospital without poster ruining her much deserved break to run back because mom has self harmed, again.

Besides the trip is planned and paid for.
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Go on your trip. If Mum has a crisis your sister can handle it.

Ask your sister to not call you if there is a crisis. You deserve an uninterrupted vacation.
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kimberlitas Jun 2019
I agree with going on the vacation and sister only calling if there is a crisis. No one can do this job ( and that's what it is) 24/7. You have earned this well deserved vacation, go and enjoy yourself!
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Go! You deserve the break, and if your Mom ends up in hospital, well she herself put her there by eating and doing all of the wrong things that she knows will get her in trouble.

In the meantime, I would remove every salty foods from the house before you depart on your vacation, so she has no access to them and request that no bad things enter the home. I would also highly recommend that your sister look after while you are gone, do that for your own peace of mind, whether she likes it or not, so you can relax and enjoy yourself, just tell her that it is not up to her, this is your much needed and deserved vacation!!! You are giving her way too much control of your life!

Go and have Fun!
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AndreaE Jun 2019
Thank you! That's a great suggestion. I really need this time and you're right...my sister should be more involved. I will talk to her and maybe we can move my mom to her house for the week.
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Well of course you go. The very idea that you would suggest you not go shows how badly you need to go.

I suspect your son knows how to dial 911 and can call your sister if needed. I hope he knows he is NOT to call you.

You pack your bags and kiss your mama good bye and wish her luck. Pull out a quarter and tell her you will play it for her.

She’s lived her life. All the trips to the ER will be pretty much the same drill until she has gone just a little too far in her self neglect. She wants to run her own life come what may. The best thing you can do is get out of the way so she can see she is hurting no one but herself.
You must stop trying to control her. She is rebelling against you. You both need a break.
Hugs
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AndreaE Jun 2019
Oh my gosh I needed to hear this! Thank you for replying. You are so right. ❤❤
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I agree with 97 yo mom.

Leave instructions with your son that is she crashes, he calls 911 and has her transported to the hospital. You should consider having her admitted to rehab after she's released and consider whether she requires a different kind of caregiving than can be provided by a kind adult daughter.
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AndreaE Jun 2019
Yes I'll definitely do that. And the last time she was discharged the social worker and doctors wanted her to go to rehab but she said she wanted to come home. I didn't want her to be mad or feel like I don't love her so I just let her come home. I will think long and hard about her placement when she is in the hospital again because it's only a matter of time.
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I haven't read other responses so sorry if this is repetitive.

Go! Actually her ending up in the hospital would work out great, everybody gets a vacation.

She doesn't get to own your entire life unless you let her. She can pout, she can self harm, her bad choices do not obligate you to be a prisoner in your own home.

Go! Have a great time. I grew up in Vegas and I have to tell you, if you are going to gamble go to the places locals go to gamble. The games are looser and you are more likely to win. Hope you hit a giant jackpot.
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AndreaE Jun 2019
Thank you! I really am so excited to go. And I feel like she had plenty of notice but she just doesn't want me to leave. So I am going to go, knowing that my sister will be here in case of an emergency. I hope I win a jackpot but honestly just the time away is the biggest prize for me. 🙂🙂
(12)
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Go. Definitely go. I have not been in a vacation in 20 years now
Due to obligations I felt I had towards my mother. Rick Steve's and I on PBS are pretty tight. That's ok. I shoulda gone though earlier.

Go. Enjoy yourself.
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She IS trying to sabotage it. Keep any ‘bad’ foods out of the house, for good! She wants attention, wants to be fussed over, doesn’t want you doing anything without her involvement. She says it’s a waste of money because she isn’t part of it, and what’s the point of you doing anything that doesn’t involve her?

With the deliberate actions she takes of trying to ruin her health... she can’t be trusted to take care of herself. Let her know that since she is so self destructive, it’s best she be in a facility.

She will not like the suggestion, but it will go one or two ways: One, she will straighten up and quit the antics; or Two, she will go into pity mode and act as if you want to get rid of her. Remind her that this is all up to HER! Either follow doctors orders and do her part to take care of herself, or have a facility do it for her.

When she asks why you just won’t do it all as you’ve been— remind her that you are no longer able to help her if she doesn’t care for herself, and it is just too sad and painful for you to watch her do this. Or you love her too much to let her decline, and you want her to have the best care at all times, aka nurses and staff.

Last part might sound a bit dramatic, but puts the blame on her, which is where it belongs. She may play the “I don’t know what you’re talking about!” card but she knows darn well what she is doing. She now has to choose to stop playing games and stay, or keep playing them elsewhere.
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Freqflyer said "everyone is different when it comes to escaping from caregiving. Some can go away and have a wonderful time, come home all refreshed.... some can go away and would still be a wreck when they got home".

I agree. I don't know how you will be, but think it is definately worth going!

I think the thing is to be (or show) a front of confidence. Don't let Mum get even a whiff of your worry. Less "I hope you will be ok while I'm gone?".

More like "Guess what? I'm off to Vegas with your GSon1 for a week... and I'll bring you back a lovely souvenir! You will have a nice week with GSon2 & your D will pop in for a visit or two. See ya!!"

Be ready for the guilt trip statements: "Oh I wish you wouldn't go/I need you/you shouldn't go" etc. Answer with a shrug "Oh, you will be fine".

The choice of whether YOU go on holiday or not is up to YOU, not Mum. This time, your Mum is lucky enough that SHE can choose where SHE will be while you are away: 1. at home 2. her daughter's or 3. respite care.

To be realistic, the future may differ. If her health needs are more than GSon/Daughter can take on, options will be reduced to only one: respite care.

(Choices given to my Mum were respite A or respite B. I said to my Mum, some things we can choose, and some things we can't. That's just how it is).

Then enjoy your holiday :)
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AndreaE Jun 2019
Thank you! I love the reply. Its straight to the point and I think that's what will work. ❤❤
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Go! Ask your sister to check on her or as stated move mom to your sister’s house for a week if that makes you feel better.

At 74 your mother is an adult and responsible for her own bad choices. Don’t let her guilt you.

Not to sound impersonal but if need be have your son call 911 if your mother gets short of breath or otherwise. And then, yes, everyone gets a vacation and your mother receives care.
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You go.

Your loving son, and please give him a hug and a medal and a halo and a pat on the back, has organised this trip to save you. Do not throw it back in his face.

I am deliberately not commenting on your mother's intentions, behaviour, attitude or condition because the WHOLE POINT of this exercise is that for those precious days she is SOMEONE ELSE'S problem and not yours. WHATEVER happens, there are other people on the planet and she will be looked after. Close your mind to everything about her for that defined time.

Other son, plus organising son, plus sister, plus healthcare team, plus emergency services, plus God Almighty if need be, between them can do your job.

GO. Don't you dare not go. Go.

Okay I will comment. Your mother is having a grump, combined with feeling anxious about having to do without her primary life support system/comfort blanket for a few days. If you relax, probably so will she - but she'll still be grumpy. Let her.
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AndreaE Jun 2019
Youre right! Thanks for reminding me about how much work my son has put into making this possible for me to go. He loves me and knows I need a break. I'm going to go for sure. I feel better with all of the support from this page. Everyone is so amazing.
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Andrea, with regard to rehab, you may have to get tough down the road when she wants to " come home" after a future hospitalization.

Folks who can't responsibly care for themselves don't get to call the shots any more than your toddlers did.
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In addition, you should go even if your mom gets hospitalized BEFORE you leave. Your life should not be ruled by her poor health and choices.
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AndreaE Jun 2019
This might actually happen with the progression of the edema at this point. We have a drs appointment on June 4th and I'll follow what the doctor says she needs to do. I will be honest about leaving and maybe her doctor will put her in a respite home knowing that she needs extra care. Thank you for the reply.
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She’s trying to go to the hospital and then blame you and make you feel guilty. Think of it this way, if she’s in hospital she is cared for and you can totally enjoy the rest and your son won’t have any troubles with her care either. She thinks she’s getting her way but she could be doing you a “favour”. Though it may be worthwhile for her to go to a nursing facility afterwards and set up ground rules before she can come home again. Limited fluids , feet raised etc.
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Judysai422 Jun 2019
Agreed. Andrea E. Has been held hostage long enough. It is time for tough love. Either Mom takes care of herself or she lives somewhere else.
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STOP! allowing her to manipulate you and steal your life from you. Your mother is of sound mind. She's making her own choices, plus she has family around to watch her.

GO! Do not allow yourself a moment's waste of time thinking about her. This time is for you and for your awesome son.

And decide in advance how much money you can afford to lose at the craps table!
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AndreaE Jun 2019
Oh yes I have a daily limit planned. Thank you for the suggestion 🙂🙂
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I have another suggestion, be sure and turn your phone off. You will not be able to rush to an emergency, no need to worry about something you can do nothing about.

Things you probably know, but I am going to remind you because of everything you have on your plate:

Be sure and drink gatorade or powerade everyday if you are outside a lot. Dry heat, you sweat but never notice because it dries instantly.

If you drink alcohol make sure and drink a glass of water for every drink, this will keep you from having a beast hangover.

Take a hat and light long sleeves, the sun can be brutally hot so being covered is actually cooler. Plus casinos want comfortable customers so it is typically cold.

Take comfy, established shoes, even if you don't plan to walk, you walk a lot in Vegas and new shoes look cute but kill your feet.

Oh yea, the higher the denomination the better the odds of winning, penny machines are easier to spend a hundred in than quarters or half dollars. I'm to cheap to play dollars unless I have won a bunch of money.

If you enjoy table games, the locals places will have lower minimums, no 1 or 2 or even 5 dollar tables in most big resorts, just fyi.

You are going to have soooooo much fun and you have so many people rooting for you, it's bound to be the best vaca ever.

Have a great getaway and be safe!
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AndreaE Jun 2019
Thank you! I will use these suggestions and I appreciate your reply. It makes me super excited to go. 😁😁
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Yes, your mother is trying to sabotage you! Period. This time, it's you taking vacation to Las Vegas with your son. If you give in to her about this trip what's next? And if you think about her behavior - her noncompliance with taking care of herself - how has she sabotaged you in the past?

Your mother is acting like a child trying to manipulate you through guilt. That is what children ages 3-6 years do. They do things to assert control over their world. Your mother is eating salty foods to assert control over her world and she has made you her world and you have enabled it. For example, you let her come home instead of going to rehab. Did she buy all those salty snacks or are those your snacks and she's just helping herself to your snacks?

Like for a child, you are going to have to set limits on the things your mother does and eats. She is living in your house. She is relying on your sons. She is loved. Loving her does not mean letting her do whatever the heck she wants, PhD in social work or not.

Your mother sounds like a difficult woman. Make arrangements with your sister to stay at your house or have your mother stay with your sister while you're in Las Vegas. Your other son probably needs a break, and I think it would be unfair to expect the young man to take over for you.
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Judysai422 Jun 2019
I so totally agree. Great answer.
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If you place her in respite you may get the same phone call as if she were at home with your son.
So if your son can take care of her..until she has to go to the hospital..let her stay at home. If he can not care for her..until she is admitted..she should be in respite.
Since you know the inevitable call will come ask your son, if he will be with her not to call you, if she is in respite ask them not to call you to call your son that is at home. He can call you and keep you updated.
Do not let her win this one.
Continue with your plans, have a great time
Make sure you see one of the Cirque du Soliel shows!
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Plan Accordingly-Make sure your son has all of the numbers of the doctors, pharmacies, etc, make sure that she has the pill containers of the meds that she needs to take on a daily basis, make sure everything is set for her while you are gone. While gone, Make sure your son lets her complaints of you being gone roll off his back. If she calls, let it go straight to voicemail. Voicemail is a god send for me lol. If he can't watch or help her, please take her to respite care (it is safe and they are better prepared to deal with people like her) or otherwise you will spend your entire vacation worrying about her/feeling guilty about not being there and you will not have any fun. Lastly, don't feel guilty about taking some time away from the situation: Obviously, you need this and her playing these kinda games is not going to stop you from taking a week off from caring for her.
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NYDaughterInLaw Jun 2019
I doubt Andrea's son will be any "competition" for his PhD-in-social-work grandmother. In my opinion, it is unrealistic to expect him to jump into the role of primary caregiver especially not when his grandmother has another daughter.
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Yes please go. You need it n so does she.
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Andrea, don’t let your manipulative mother ruin this special trip which your loving son has arranged. Your first allegiance is to your own children and to yourself, not to your self-centered mother. If you are distracted and unhappy and tense and jumpy whilst on this Las Vegas trip with Son #1, you are being utterly unfair to him. He loves you and wants you to regain some “regular” life. Don’t foolishly steal that from him.

One fantastic thing non-casino thing to do in Las Vegas is to take a nighttime tour of lit-up fabulous old neon signs in the outdoor “boneyard” of the Neon Museum. We took a taxi from our strip hotel to the museum, had a jolly good time with other tourists from around the world, and phoned for a taxi at tour’s end. Even easier if you have a rental car. Another memorable thing to do is head 19 miles northwest of the strip to Red Rock Canyon national conservation area. It boasts a thirteen mile loop drive of spectacular, Grand Canyon like scenery. You can get out and hike a bit at various lookouts, or stay in your car and just marvel at everything. Then head back to Glitter Gulch for more sophisticated fun.

Enjoy yourself on this well-earned vacation, and make sure your son knows you’re enjoying yourself.
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NYDaughterInLaw Jun 2019
The Neon Museum is awesome!!! The shopping and food are also amazing both in terms of quality and selection. I love Vegas and am not a gambler and still find many things to do with myself while the others go gambling. They know how to pamper people!
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You GO! I'm sure whether consciously or not your mother has just become so reliant on you and in particular when she has "event's" that take her to the hospital she is simply afraid to have you out of reach. It isn't necessarily because she doesn't feel you should have a vacation or want you to have this trip she's just has no idea what it looks like in her life not having you right there. We all know how hard change is on our elderly LO's, they like their routines and this is a change for her. My mom lives on her own (she has renters upstairs we can call on) but my brother lives 20-30 min away and goes up regularly and although I'm 4 hrs away we have a camera and a couple of Echo Show's we use to keep track of her and check in daily along with phone calls daily. My brother is an airline pilot so she's used to him being gone and knows I'm 4-6 hrs away, she wants to live "on her own" but knows she couldn't without our help. Anyway my brothers and I decided to go visit our dad and his wife who lives in AZ, our youngest bro lices in CA and is also an airline pilot (my dad is a retired pilot) so they are both able to jump seat if need be and I travel on a pass, thank you unmarried bro. We were all meeting out there for a long weekend and both local bro and I weren't any further from getting to mom if need be than usual when he was flying, we set it up with 2 of her cousins who live not 5 min from her to be on call for any emergency so things really were no different for mom but something about knowing we were both that far away made her very anxious, she wigged. She wasn't trying to stop us from going, she supported that 100% but she just got so anxious about things being different even though she never would have known had we not told her, still checking camera and calling her a couple times a day but it was so hard on her, things coming up...left her phone on the van, forgot to take her pills...that the next time we did that we just didn't tell her. We didn't hide it we just didn't tell her ahead of time. I know this doesn't work for you, she lives with you but my point is it may not be conscious sabotage or anything your mom can really control, she's just going to have to deal with it.

I would give her the option, go stay with sister or respite care while you are gone with your son. If she ends up in the hospital sister and the son at home will be the ones overseeing that and while they will keep you up dated you will see her when you get back. You don't have to be "on site" to help oversee things and both this time away and this time with your son are simply too important. You might even take the tact that it would mean so much to you if she could help make this trip special for your dear son who wants to take it with you and try to keep herself in the best shape possible. But if she doesn't that's her choice and she lives with the consequences of having a hospital stay without you. Give her some ownership in things with choices just not her first choice perhaps. Ask you sister to "take over" all the over site if mom chooses respite facility, your house is not an option while you are away unless mom wants to hire 24/7 caregivers, meaning you only get contacted if absolutely necessary, you will check in with sis when you want to know how things are going but really she is protecting you from all that worry and responsibility, she is perfectly capable with your son who lives with mom of taking care of things and knowing when they absolutely have to contact you.

Then you GO have a great time with your wonderful son.
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AndreaE Jun 2019
Thank you. You've given me some great ideas! 🙂🙂
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Go. Get out of that house and have fun for once! Your Mom needs to behave like the adult she is and stop being a travel agent for guilt trips with you! If she crashes, then that's on her. You can't force her to change and she can't force you to stay. Since she's taking in more fluids than she needs, take the fluids away from her. She can get up to get them on her own, seeing as she's an adult.
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AndreaE,
By all means and without any guilt, GO on your vacation..... you NEED it and deserve it!!

And on a daily basis at home, find something/someplace to go, if not daily, at least every couple of days when you are at home.

If the weather permits, go to a park and read a book and take earbuds/or similar and listen to music; or go to a book store that has a cafe with it and get a sandwich and read.... do things to treat yourself, ........ and do NOT tell your mother what you do on these outings, or she will try to "take it from you" by being negative and such. Enjoy Vegas!!!! (p.s. and no, NO phone calls from home while you are in Vegas.)
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I would recommend palliative care consult and hospice because quite honestly you are now looking at the end of life with this degree of heart and lung failure. The fluid in lungs and in legs indicates both right and left heart failure. She may well die when you are gone, with her history of 8 admissions for the lungs full of fluid. This can happen in moments, and when the lungs fill in minutes it is called Flash Pulmonary Edema. No, I would not take this vacation. Sadly. I think you are now dealing with the end of your Mom's life, and that hospice should be called. First ask her doctor to recommend a palliative care consult, or speak with him about palliative care. Just my opinion as an old retired RN. I normally would say put Mom in Assisted Living Respite care for a week or two where they can handle things, but I have a feeling the stress of that would only have you called while on vacation, and ruin your vacation. Sorry this is where you are.
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MJInslee Jun 2019
Sorry, but I trust this daughter would know if her mother was so dire she should not go. She doesn't say the doctors think her mother is that close to the end.
The daughter is going to be gone a very short time.
Sorry, but to me, it sounds like the mother has manipulated you, too!!
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Why would you even consider not going on your much needed vacation?? You know your mother is being downright stubborn and manipulative....so be it, shes making that conscious choice. So she can deal with th consequences!!!! Go with NO guilt, and enjoy the time away, you certainly need it!!!
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Andrea go on Your planned vacatation and enjoy Yourself. Do not deny Yourself this chance as Your body and mind needs rest from being a full time Carer to Your Mom Who is I know completely dependant on You. Try to arrange Restbite Care for Your Mom so You will be certain that She is ok, otherwise arrange for Carers to call in on Your Mom a few times every day while You are away. Remember You can not Care for Your Mom if You do not take good Care of Yourself first.
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Andrea, it might be a challenge to turn off your phone, but you could swap phones with your son. You can pass messages to him, and he can NOT pass messages to you!
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As one who knows burnout...(10 years of bedside caregiving), I've got to chime-in and say "GO!"
Simply put, If you don't take care of yourself, sooner or later, you'll be no good for anyone else, and the longer you put-off taking your well deserved time, the worse the repercussions become.
Try to remember that you are not responsible for your mother not taking care of herself. Do not leave yourself open to manipulation from one who disregards the personal responsibility of what is, or should be in her control, not yours.
I know what you are feeling, right now.
Please ask yourself if any of this was on your mind on your Wedding Day....
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