New to caregiving, how do I cope with all of this? - AgingCare.com

New to caregiving, how do I cope with all of this?

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Hello all, I just found this group and reading through some of the posts, I thank God I found it. My mom is 86 years old, chronic lung disease (she walks 10 feet and is severely out of breath) and heart issues. Lives alone, still driving, severely depressed, only eats frozen dinners, has no friends,does not want any outside help, only me. She is constantly telling me she wants to die. I am the only child, no living relatives, no help. I finally "forced" her to go to the doctors after 4 years, she cried on and off while at the dr. Office. The pulmonoligist told her that there is nothing that he can do because the damage to the lungs is so bad. Her feet are badly swollen due to the retention of water due to her heart condition.
I am going out of my mind! For the last 2 months everyday I talk to her and she goes on and on about her health and cries. I can't take it anymore. I feel I need to put up some boundaries with her, because I can't be her whipping board. We have always had a difficult relationship and she has used health issues all of her life to get attention. To be honest and please don't judge, but I have never liked my mom. I could live with my mom and take care of her 24 hours a day and it would never be enough. So, I am now in a position to manage her health care. I'm overwhelmed physically and emotionally. How do you all cope with all of this? Any suggestions would be greatly appreciated. Terri

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I too am an only child who is getting more and more involved with the day to day caring of my parents. Dad is 85 who has CHF, Kidney failure stage 4, arthritis, hip that needs replacing but is not able to, swollen feet and legs. Mom is 87 and has her own set of issues although the worst part is hard of hearing and refusal to get a hearing aid. I work full-time and cannot afford to quit my job but thankfully have the flexibility with my hours to take them to appts, etc. Dad's mobility is getting worse and today was unable to even get out of his chair or stand for a few seconds with his walker. I've had EMTs there on numerous occasions to pick him up off the floor when he's "dropped" from weakness. I told them today that we need to start thinking about other living arrangements or else home health care. I just don't even know where to start with the process of getting them help or nursing home placement process. I live in upstate NY. I'm overwhelmed. Any suggestions?
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You can limit the phone calls, and maybe even not feel bad about it! What is best for you - one long-ish call a day, or more calls that last a shorter time? "I have to go, because my boss is waiting to talk to me." "Oops! something is boiling over! Talk to you tomorrow! Love ya!"

Give her lots of sympathy, because it does suck to be her. Your feeling guilty doesn't ease her pain, so usher guilt out the door as often as necessary. Good luck.
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Splashingpaws, here is a great article about how not everyone is cut out to be a caregiver. I knew I wasn't cut out to be hands-on, so this article was a welcome relief, but I was cut out to be logistical but found that to be physically exhausting in itself and also very emotionally draining. I don't know how some caregivers can do both hands-on and logistical, and remain sane. More power to them.

https://www.agingcare.com/articles/not-everyone-cut-out-to-be-a-caregiver-162192.htm
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Well, if nothing is working, then there's really nothing you can do, right? Start backing off; when she starts complaining about her health, remind her sweetly that she won't do anything about it, so it's not going to improve.

Sounds like she's playing you for sympathy. And it seems cruel, but if you do play into the manipulation, she's taken control of the situation.

If you're up to it, the next time she complains about her health, ask her what it is she expects you to do since she herself has refused her help. Essentially you're just putting the issue right back to her. She's in control of the situation.
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I am also an only child,, and this site has been a lifesaver for me as well.. Welcome aboard!!
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So it sound like she has meds.. won;t take them? Won;t accept help.. except you .. Harsh as it is maybe she does want to.. she is certainly heading herself into that direction. You can only do what you can do.. and you can;t force her at this point.. Try to get POA so you can at least handle her affairs while she does this. My Mom also "wants to die",, but not really.. she wants attention. Alot of what she does is to get hubs and I to fuss over her. We have found when we sort of ignor the situation it gets better,, but boy is it hard! Good luck with this.. it is heartbreaking.. but try not to get too sucked in
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I n other words, she's basically being her own worst enemy, yes?

"Well, mom, i guess we're going to have to call a hospice provider, since you say that you're ready to stop all treatment". Seriously, if that's what she wants, help her to get it.
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Thank you all for your suggestions. All great! My mom will not go to anymore doctors. She won't take the medication prescribed by the doctors. She won't accept outside help, would not consider an assisted living situation. I have tried every approach, nothing is working.
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Let's address what CAN be done about her health.

1. I'm surprised a pulmonologist would say that nothing can be done, unless whatever can be done is already in place. Is your mother on oxygen 24/7? Does she have a nebulizer? Use an incentive spirometer? Had pulmonary therapy? Use any kind of pulmonary inhaler or meds?

If not, find another pulmonary doctor. She may qualify for oxygen 24/7 which would at least improve her ability to breathe, and give her more energy to walk farther than 10 feet.

Find out from either the existing or a new pulmonary doctor if there are any hospitals that offer pulmonary therapy. Medicare's requirements are quite rigid, but she might qualify. It's an exercise program that addresses pulmonary issues, and could help her.

I'm wondering, though, if she has such restrictive pulmonary function, how she manages to get around to the various places she goes once she gets out of the car.

2. Is she a competent driver? Or is she a danger to herself and others?

3. If she doesn't want outside help, I assume that means she's not interested in MOW. She probably would have to be considered generally home bound in order to get it anyway.

4. A cardiologist can prescribe Lasix for reduction of fluid retention. She can also monitor her diet, especially the frozen foods, and cut out those with higher sodium content. Eliminating sauces that are also high sodium is another step to take.

5. You're in a situation similar to many others who have posted here: parent is demanding, adult sibling feels overwhelmed, parent won't make any compromises, adult sibling is stretched to breaking point.

The first step is to tell her, firmly but nicely, that there are 2 of you in this relationship and you can't and won't compromise if she won't meet you half way. That means that she addresses her health issues, accepts some limited outside help (starting with MOW), and helps find ways she can work with you as an equal (that will be a hard part) rather than as her servant.

The two of you are on a two-way street, and in order to help her, you need her to make some compromises. It will be hard if she refuses, but if she does, you might have to as well. There has to be a give and take in these kinds of relationships. When it's all "take", the "giver" is going to get burnt out and develop so many health problems that he/she can't give anymore.
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Please do not take on hands-on personal care. It would not be fair to your mother or to you. At most, manage her care by arranging for in-home care or finding a suitable care center for her. If you are up to it, help arrange the financial resources. If she needs Medicaid, help her apply. I don't suggest that you abandon her, but please, please to not undertake the daily care she needs.

She only wants you, and no professional hired help? My mommy taught all of us early on that we can't always have what we want. Time for your mother to face that.

Has she seen a heart specialist? There are steps that can make her more comfortable and reduce the swelling. That would be worthwhile.

When she says she just wants to die, how about something like: "Yes, Mom, I understand. And you will. But neither you nor I control the timing of that. Until it is your time to die I want you to be comfortable. That is why it is important that we ..." Fill in the blank with getting in-home care or going to a care center.
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