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since I am the daughter. I originally posted this on an older forum and someone replied that I might need to post to a current discussion. I am just looking for others in my situation. My Dad is elderly and been having strokes and is now almost completely bed ridden. My mother was his caregiver at home, but now he is termporily in a nursing home as he recovers from an infrection from a bedsore. He is expected to be there for about 20 days. They moved close to me about 4 years ago and it has been a struggle since they moved here. I feel like I am always trying to establish boundaries with my mom --- I understand she is taking care of my dad and it's difficult for her, but she refuses to hire help and expects me to be his caregiver too. I am torn on what is the appropriate level of involvement --- I love my parents, but I am trying to balance my own life with their needs. My mom treats me like a child and makes me feel guilty for trying to live my own life. Now that he is in the nursing home she stays with him all day to feed him and does not want him to be alone. She expects me to 'relieve" her all day on Saturdays, half day on Sunday and then come there after work to feed him dinner so she can go home and rest. I do not have children and my husband died 4 years ago so she does not seem to respct the fact that I do have a ife -- I have a career, I am on a local Non-Profit Board, I have friends and I have started a new relationship. For others in similar situations I am curious how involved you are in caregiving of your parent? (My parents have resources to pay for help, but my mom does not want strangers taking care of my dad and is convinced as the daughtre it's my responsiblity to take care of my dad.

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Shcshl: That's right. Oftentimes our elderly parents WILL listen to others' advice rather than ours.
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It is such a relief to hear that there are others in similar situations and this has helped. I also went to see a counselor that affirmed what people are telling me and that I need to determine my boundaries, communicate them and then stick to it. At this point I plan to go by the nursing home for short visits as much as I can and since I work nearby I plan to try every day or every other day. I also talked to the social worker at the nursing home and the nurse to confirm that my mom does not have to be there all day. I keep reminding my mom that she does not have to be there the whole time and if she insists someone be there then she can hire a personal caregiver and have given her the numbers to call. I also told her and the social worker that if he is released to go home then my mom is going to have to hire caregivers because my mom can't do it. She just won't have a choice I have tried numerous times to get her to hire help - and she won't even let someone come and clean house for her, but I think the professionals at the nursing home will be able to help convince her.
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Shcshl: I do not agree, just because you are single, that you can be at mom's beck and call at every hour! If she expects you to give up significant amounts of time, then something is definitely amiss with her mindset. YOU control your life, not MOM. Don't listen to the guilt trip for a minute! Elders are very good at it!
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Is it possible to get a caregiver with the thought that this person is to help your Mom so she can concentrate on your Dad?
The caregiver could do light laundry, light house cleaning and then gradually get more involved in direct contact. Your Dad is sleeping, caregiver can say..why don't you run to the store to get the shopping done, or go get your hair done I will be here when he wakes and I will make sure he is safe until you return.
This way in your Mom's mind she is still doing "her job" as a wife.
Also this would be a great time for you and your Mom to get out together and have lunch. Start by bringing a lunch and just relaxing with her then next time suggest going out for a bit.
Stress that NO one will EVER be able to care for your Dad as well as she does but she needs to take care of herself so she can help him as long as he needs it.
You do not have to mention that statistics show that most caregivers die before the person they are caring for. This is because of stress and the fact that they ignore their own health and their own needs for time to do for themselves what they do for their loved one.
This will take time but getting a caregiver will help both your Dad, your Mom and you since you will be able to spend time as a daughter first not a caregiver.
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It was rough, teaching mom that. And it was hard when she'd cry on the phone. But we stood firm. For $5000. a month, we told her she had a right to get service!
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...for mom, that is.
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Ah Babalou, that wouldn't be near as satisfying!
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I do think that a family member should try to be around to supervise paid caregivers. A family member is caring with the heart and for most caregivers it's a job. I think that asking for help can be a generational thing. My father had the hardest time asking for help. It was heartbreaking. I knew that he was really ill when he starting asking me for assistance getting up. He would not ask for help unless he was forced to.
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"Talk to the staff, Mom".
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Well I am an only child, a son and it works for sons also. My mother is in an AL facility after my wife put her foot down about Mom expecting to rule the roost, our house, and for the second time we tried to have her live with us. So I get calls about everything and anything most any hour of the day or night. And when I visit her I get the litany of complaints about everything in her life. And, she expects me to jump in the car and drive the 12 miles to fix whatever is the current emergency. She absolutely does consider me, at 69, her little boy. Which is why we had bitter fights while she was here over trying to bend my life to suit her. I resisted and that is when the fights began. Even down to her pointing her finger at me and saying,"You are my son, and I am your mother!" Then she pointed at my wife and said,"You did this!" That was after I told her we couldn't care for her anymore and she was moving to the AL faciltiy. I am afraid you will have to go through this also if ever you want to live your life in peace. You have to be strong like never before.
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When my mom was in rehab for 6 wks after a serious illness, my father went to be by her bedside from 9am until 6pm (until basically I came from work to "relieve" him). I couldn't very well say no because at the time I was between homes and living with them (only lasted 6 months because of a myriad of issues; essentially the same issues that drove me to leave home at 19 and never come back for 50 yrs). Anyway, on one hand I could see the need for a patient advocate. At both the hospital and at the rehab center, the food service people would just plop a tray of food on the bedside table and leave. No one checked to see if she was capable of feeding herself or if the table was too far for her to grab since she couldn't get out of bed or even lift herself. So, my father took it upon himself to spoon feed her, cut up her food etc. That is pretty scary since I am single. Who will feed ME when I'm in my 80's and in the hospital? (another thread I suppose). It wasn't expressed but the unspoken expectation was that every day after work I would come by and relieve my father. It was the longest 6 wks ever. I was exhausted.

Fast forward, my mother is back home and calls me every night asking me to come over for dinner, to visit etc after work. On weekends I'm trying to "get a life" again and volunteering, going to weddings, showers etc. She says I can do all that when she dies. yes, guilt lol

My mother has always been controlling and demanding. Alzheimer's has not changed that core part of her personality. She expects me to not have any sort of life and only live for hers. I do have grown children but out of state. I swear I will not do this to my own daughter!

And lastly, no neither of them will accept outside care in the house. I tried to hire a housekeeper and my father fired her after 2 visits. They are both late 80's. Throws hands up in the air....
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My parents came from the generation where the husband worked outside of the home and the wife took care of the house, the children, and the husband. That was "her job".

I also recall that my Mom refused to acknowledge that my Dad even had a heart attack... good grief, if that got out then people would think she wasn't a good wife. But that was her way of thinking, and probably a lot of wives in her generation of those who married 60-70 years ago.

Guess my Mom didn't want to be fired or replaced in "her job" so she was determined that she be the only caregiver.... [sign].

I really think us younger generation [if you call being 70 younger, like me] we are more open to having outside help.
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Freqflyer, Carla, Rocknrobin, - yep, that's my mom. Unfortunately my mom knew when it came to my dad, I would do anything - so using him was her best weapon in getting me to do anything she wanted. Thanks for your kind support. Shcshl - I understand what you're going through. Stay strong!
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Schshl, thanks for the clarification. It sounds like mom may be in dire ned of assistance with the end stage caregiving, but I'm sure it will be a challenge to get her to accept that.

The best thing may be to step back and let the professionals explain things to her, couched in terms of " if you love him, you want what's best for him, which is professional care".
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I thought a bit more about this situation. Many wives feel that it is their place to always be there for their husbands, and if they can't be there, then a family member is needed as a substitute. I imagine that even when a professional caregiver is there that your mother feels she needs to be with your father, because the caregiver is not family. It will be hard to work through this strong feeling of obligation that your mother has if that is what is going on. Shcshl, you probably won't be able to change your mother's feelings, but you'll only be able to work with her to let her know what you can do to help. I do feel badly for your mother, but I know that her decision can only be for her own life.

It is so hard to advise when a family member is as ill as your father. It is so personal and I know you have a lot of feelings you are working through, too. I imagine that you also have a strong sense of responsibility. We can get torn between our responsibilities to family and ourselves. The trick is finding the right balance so we don't end up harming ourselves if an illness is long. Please let us know how it is going.
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Rainmom..........There's not a jury in the world that would convict you after reading that post.
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Schschl,
In you follow up post you said that your mom is good with making you feel guilty. That seems to be a very common trait with people who are caregivers. I've read that it can be an inappropriate response to overwrought caregivers. It's called Caregiver Syndrome or something like that. You can research it on-line. How long have you been doing this?

If you know that you are doing the right thing, which is sounds like you are, I would try to work past the guilt. Perhaps practice some self soothing exercises to get you through it or some distractions. Rehearse you responses to your mom, before you speak with her, so you have prepared responses. Perhaps a counselor could give you some tools to use to combat it.

Do you believe that your mom is not right about this? Admitting that, might help you not feel guilty. If you are more confident in your decisions, you might not be so bothered.

I am fortunate that I was taught to feel guilty when I was not doing the right thing and to stand up for myself. So, I don't have a lot of guilt when I'm doing what I believe is fair. I also think it's important to not allow others to manipulate you. If you think that is what is happening, you might address that as well.

I hope things work out well. There have been some good suggestions on your thread. Please post about what happens and how you are feeling.
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Rainmom - your story about being summoned over because your Mom needed to take a bath - that's just priceless. She couldn't take a bath during the 12-16 hours while the caregiver was there? You had to drop everything and race over there like it was a huge emergency so she could take a BATH??? I would have wanted to shoot her, too!

But this goes back to what JessieBelle was saying above, about daughters being viewed as expendable people. Apparently it's not only single daughters without kids - it's any daughter within traveling range. Sheesh!!!
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Shcshl, what you wrote about how your Mom thinks she can take care of your Dad sounded so very familiar. I remember back when my Dad had a heart attack, Mom did not want Dad to go to rehab, she felt she could take care of her husband at home by herself.... earth to Mom, you are 90+ years old !!!

Poor Dad I really believe his recovery was slowed down to a snails pace because of Mom's outdated thinking that only she could take care of my father. Mom also refused outside help. She wasn't all that friendly to the nurse who would stop in to take vital signs... it was how dare another women have her hands on my Dad... and she even snarled at the physical therapists.

The only time I helped was for getting groceries, running errands,and driving them to doctor appointments as Dad couldn't drive while in recovery. Any suggestions fell on deaf ears [pun intended] as I was just a kid [in my mid 60's at that time] so what did I know :P
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Rainmom, as frustrating as it was to rush over to your parents place, probably thinking the worse, and it was your Mom who wanted to take a bath, I had to chuckle when you wrote " good thing their facility had a No Guns Allowed rules" :P
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I remember when it all started with my parents almost six years ago. Dad had been playing loosey goosey with his medications and had gotten sick but mom was still okay - they were living at home. At first mom asked me to sit with dad so she could go to church. I adored my dad so of course I said yes. Pretty soon "church" was a full Sunday - she just wouldn't come home until she had done whatever it was she did. Never mind it was the only day of the week when me, hubby and Rainman were all home and for over ten years it was our "family day". Still, I never stood up to mom but this routine only lasted a few months as dad got better. Later when things had moved to Defcon 1, mom would create drama to get me over to their IL place whenever she wanted - never mind they had 12 - 16 hours hired caregiver everyday. My favorite is when mom called me all vaguely hysterical saying my dad needed me and I had to come over immediately. Now, daddy had just been put on hospice care, it was 8:30pm and the caregiver had left at 8pm, what the hell could have happened? All of this was still pretty new to me - so I hopped in my car and drove like a maniac to get there. I fly in the door expecting the worst...nothing. Daddy is dozing in his bed and moms just standing there holding her bathrobe. Mom proceeds to tell me she needs me to sit with my dad while she takes a bath. All I can say is - it's a good thing their facility had a "No Guns Allowed" rule. Soooo - decide how much you want to do, how and when you'll do it. Make sure your mother has a clear understanding of what you mean - and mean what you say.
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Shc, you are a caring and insightful daughter!! We all feel like roten kids from time to time, because we should be able to fix things, right? That's what we do in our professional lives, so why not with mom and dad as well?

This is a rough, tough patch you're navigating right now. Stick around. There are some smart cookies here who can be your sounding boards!
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Thanks to all of you.

Babalou- She did call hospice but the nurse did not call her back soon enough. I was out of town and she did not call me until later when he was already at the ER. I do plan to contact hospice on Monday to ask about their local inpatient facility.

Sunnygirl- it's not so much that I am afraid of disappointing her, but she is so good at the guilt trip and after awhile I start to doubt myself and I am so glad that I got the courage to post on this forum. It's been helpful to hear that I am not a horrible daughter. My only concern at this point is and should be making sure my dad is cared for properly.
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How about he goes to a hospice facility, or to a nh with hospice?

When he started running the fever, did mom call the hospice provider?

Being on hospice is supposed to prevent these painful and damaging ambulance trips, ers and hospitalizations. He might be so much better off somewhere where his symptoms, such as fever, can be managed.

I'm so sorry that you are in this pickle!
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It sounds like your mother has unrealistic expectations of what she can take care of in the home, as well as what time you should be devoting to visiting with your father.

You say that your father has had multiple strokes and is almost completely bed bound. Has your mother inquired as to what kind of care that entails? The fact that she thinks it is feasible for her to do alone concerns me. If he comes home, she may likely want you taking over shifts there as well. How will you respond?

Have you explained to her that dad would be fine on the days she wants to go home to rest and that the staff will take good care of his meals. I would hope the rehab staff understand that mother has limitations, thus the bed sore and that you will not be involved in his in home care. Hopefully, they can convince her what he might need.

Do you feel that you would disappoint your mother if you established your boundaries? I haven't actually been in your position before, so it's difficult to imagine. I would do what I could, if needed, certainly, but, it seems that your mother's expectations are not reasonable.

I try to consider what is reasonable and if it isn't, I won't do it.
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Thank you. Part of the issue is that he has a history of strokes and now can't verbalize his thoughts or tell her what he wants. He was on hospice but had to come off when she called 911 because his fever was so high. He was admitted to the hospital and hospice had to release him. If he goes home we will get back in hospice and she will have to hire someone to help. She just does not want 'strangers' to help. She keeps saying it should be family. I have to say that all the comments are encouraging and have helped reassure me that I am not the only one in this situation and I am not being selfish. i don't have any intention to ignore either of them but I don't want to become a caregiver and give up my life.
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While I agree with everyone regarding just how much your Mom will push you beyond your limits of what you can and are willing to do, your Dad may be able to come home, but Only if your Mom agrees to having in home care, that would oversee his bedsores and other ADL's, and give her the additional help and time off in order for her to be able to manage both of their lives. Ever before he comes home, you must establish Exactly what your time allotment of care and involvement will be! If she will not agree to those terms, and make sure she will abide by them, then let her know now, that this will not work for you, as you must be able to continue working, and have time to enjoy your life as it is now, with outside curricular activities and a love life. You deserve that, and she may as well bring him home WITH PROPER HELP, as she is spending all her time there anyways. It would be so much easier, if her were home with professionals coming in to relieve her, just that it cannot be just You, who is her only relief person. I'm sure that money might be an issue, but insurance does pay for a lot of this type of care! You must establish those ground rules, or she will run you and herself into the ground! I wonder if it might be time to have him evaluated for Hospice?
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There is something about single women without children that parents tend to see as expendable. After a while we can start feeling like we are expendable. We do want to help people, but we don't want to be exploited. It makes me angry in my own situation, and it makes me angry when I see it happening to someone else. I am glad that you don't live with your parents. I think the advice you received in the other thread about putting limits on what you will do is very good. Your mother should actually be using this time when your dad is with professionals to give herself a break. I imagine she feels like she has to be there all the time. It would be great if your dad would tell her to go home. Maybe he would like some time to himself -- I don't know.

For her to request your entire weekend to just be there makes no sense. You don't have to buy into her obsessiveness. I am having a hard time figuring why she feels she needs to be there all the time. Is she worried that he might pass away? Or is he asking her to stay all the time? If so, that is between the two of them.

In your position I would decide what I could do, then stick to it unless there is an emergency where you are really needed. And whatever you do, don't move in with them! Take it from one who knows. I agree with the Babalou and Pam that it may be time for your father to receive care in a facility. Bed sores can happen anywhere, but they are serious things that should be handled by people who know how. Otherwise they become infected and invasive and very painful, introducing much suffering for the person and the caregiver, as well. Discuss this with the doctors, then make an informed decision on how to keep your father most comfortable.
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Well, if Dad is getting bedsores in mom's care, then he needs a full time nursing home. Talk to the social worker there about how you can help. Visit Dad once a week as your schedule allows, for about an hour. Do not let mom bully you into giving up your life. I do not foresee Dad going home because mom cannot possibly provide the care level he needs.
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You have a great opportunity now that your dad is in a facility. They won't release him into an unsafe environment. Make sure that the discharge folks understand that despite what your mom might be telling them, you will not be around to be dad's caregiver.

Many years ago, my grandmother broke her hip and she told hospital personnel " oh, I'll just be an iinvalid and my daughter will take care of me" That would have been my mom with the three little kids.

Um, no grandma, you're going to to rehab to learn to walk again. Oh, the indignity of it! But i learned how to say "no".
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