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My mom (84) has been going steadily downhill for the past few months. She has had 3 UTIs which landed her in the hospital and today her aide called to tell me there is blood in her urine again. (UTIs due to massive kidney stone that requires surgery, but she is never well enough to have the surgery). I have a constant knot in my stomach and am constantly fielding calls from doctors, nurses, insurance, etc. (She is at home with 24/7 care, in a wheelchair or bed all day.) I have been at my company for 7 years, but recently took on a new position that feels like a brand-new job. I have a new boss and there is TONS of work and things for me to learn. I did tell my boss that my mom has been ill and she was understanding, but, still, I am SO stressed out trying to keep up with everything. I'm an only child, so I'm it as far as managing my mother's care. WTF do you do in this situation? I am wrung out.

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Oh, I'm so sorry to hear about your husband, Mary. This must be so painful for both of you.

You are so right about playing roles. I wake up every morning wanting desperately to stay in bed, but I know that would only make me feel worse. So I get myself into my work "costume," and do my best to act like a functional employee. Then I get home and fall apart, and on it goes.
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My husband has terminal cancer. He has a month to three months left. We've been married for 40 years this coming February. I am fortunate that my work has allowed me to work half days, so I can care for my husband, take him to doctors, run errands, etc. At first, short after the diagnosis 2 years ago, I was immobilized. I could not make myself pull out of the garage to go to work.
Then a good friend of mine, who had gone through a similar situation, told me "You have to look at your different duties and responsibilities as roles in a movie. when you leave one, like caregiver, you have to step out of that set, and put on the costume for the next role, employee. When the garage door closes, you consciously leave that life behind and take the drive as down time, a void, where nothing else matters, until you arrive at work. Then you are the employee, and you have decided to be nothing else, but an excellent employee. When the bell chimes and it's time to leave,  you put on your errand girl outfit ... use your travel time, however short it is, as down time again to refresh your brain. This may be the ONLY time you have for yourself. Use it wisely and most effectively.
Best wishes.
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Sounds like you may have to take some time off from time-to-time. Does you job offer FMLA Family Medical Leave Act. When I was caring for my mom long distance and in my home; I applied for intermittent FMLA. This allowed you me to take time off as needed.

I don't know what you do for a living, but talk to your boss; most employers understand these types of situations. Can you alternate your schedule, do some work from home, or possibly hire an intern or a volunteer to help at work. That way - if you need to focus on mom you can and the work is still getting done.
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Xina, I was told recently by a nurse that they're not allowed to give out medical documentation, including test results. Technically, that's supposed to be subject of a records request to the Medical Records department.

I think I found one for that hospital online, but it may have been sent to me.

You might ask if a discharge planner, social worker (often the same role) can get the forms for you, or the next time you visit, go to medical records and get the form, and complete it then and there. The issue would be whether or not it's available in that department, but I don't see why they couldn't access it on hospital computers now that literally everything is computerized.
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What's insane is that everyone I ask for how to get the record of the pre-op clearance she was given by a random cardiologist in the hospital tells me something else. But I will get them!!

It concerns me that she is completely uninterested in food lately and sleeping a lot too. I think these UTIs wear her out. Sigh...
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If a two-hour surgery is going to prevent your mother from having recurrent UTIs, I think you ought to consider it. The ER is a dangerous place that's filled with lots of germs, and every time you take her there she is at risk of contracting something. You know that the UTIs will not stop without the surgery. I think you are fretting over making a decision but not seeing the bigger picture that is her quality of life. One way or another, we all depart from this life.
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Thanks, Marilyn. I'll check out the link. In my mother's case the root cause of the UTIs is a major "staghorn" kidney stone. It basically "holds onto" bacteria that keeps infecting her. So the antibiotics/fluids work to patch things up for a bit, but they don't address the root cause. I have being extremely reluctant to put her through the surgery she needs. (No other less-invasive methods will work on her kind of stone.) It's not that big a deal - takes about 2 hours, incision is small, and she would only stay in the hospital overnight. It's the anesthesia that scares me (local not an option), and she is just so weak, hardly eats, and is scared of surgery. Poor thing. But after this 4th hospitalization in 6 mos, I am ready to sign her up. She was determined a "low to moderate" risk by a cardiologist in the hospital. The most complicated part of this at the moment is getting those records to her surgeon, who is at a different hospital. SO ANNOYING. Should not take jumping through a million hoops (don't ask). By the time I get those to him, she'll have another UTI! Another trip to the ER is just too much to contemplate right now! She went in Saturday at 2pm and didn't get put into a regular room until 2 am! Came home today and am crossing my fingers the stupid UTI can just hold off for at least a month this time!
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Xinabess, during one of mother's hospitalizations and after she moved to rehab, she had to have IV antibiotics because the UTI wouldn't clear up, so she saw an infectious disease specialist. Basically, the nurse comes and flushes out the bladder with a sterile solution, (there may be some antibiotic in the solution) and there isn't time for bacteria to grow, it's performed weekly. The doctor has said that it's unusual but she's prescribed this for multiple patients and it's working. It is true that many elderly patients have UTI's with no symptoms and it doesn't seem to bother them. But, for those who are negatively affected, like my mom, it's a blessing. I googled it and here's a link. I really hope it helps. http://www.nsgmed.com/nursing-procedures/bladder-irrigation-purposes-equipments-procedure-complications/
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I am so sorry you are going through this with your mom. I recently went through this with a loved one, and the doctors all said the stone was too large to pass on its own, but it did after a couple of months. Because of the UTI/kidney stone combo, I would find out how much water your mom can take without it affecting any other part of her health and try to give her that amount. The water might help with both the UTI and the kidney stone. I'm glad you are getting her up every day b/c I believe getting my loved one out of bed and into a wheelchair for "sitting up time" helped the stone pass. Now, in regards to the UTI. At a certain point with elderly women, an occasional UTI becomes a chronic colonized urinary tract. If that's the case, then it's never going to get completely better. Be careful with the antibiotics. You may end up using them up on her colonized urinary tract, and then they won't be effective when your mom gets really sick. Also, the antibiotics have side effects b/c they kill the good bacteria along with the bad.

Last, but definitely not least, your job. There is no getting around it. If you are an only child, and the weight of all of this is on your shoulders, it is going to be very stressful. You are worried, you love your mom, and you are not a medical doctor, so some of this feels like a foreign language. This approach helped me with my job: Think of your time at work as an oasis where you can be free from worry about your mom. Make a list of calls you will need to make during your lunch break, so you don't stress about that. But, just savor the freedom to concentrate on your work when you are working. If your mom is warm and loving, she would want professional success for you and want you to do this. You will have time--and it may not feel like enough time--to take care of her outside of normal working hours.

One last thing, see if HR can sign you up for Family Leave. That way if you unexpectedly have to come in late, leave early, or leave for a couple of hours during the day, It will be through Family Leave, and the company can't legally penalize you for this.

I hope some of this helps, and I think you are wonderful to be taking such good care of your mom.
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I got the same situation with my mother, and trust me is easy to give advise than do. I am pray for you.
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Is there a geriatric care manager in your area? That may provide someone else to deal with the phone calls, etc and give you more time to focus. Costs money but it can free you. I would have suggested Family Leave but I suspect you'd rather not with a new position/promotion.
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I too have the same problem. I pray a lot, and changed my outlook after talking with my pastor's mom (woman to woman)
I have 2 siblings, but they do not or not able to spend time with her. Talking from MY personal grief in this situation, I can tell you that the more you and she can talk on a "real time basis" about your lives and say with love whats important, not the things that don't make a bit of difference. I gues I may not make any sense. So hard to write what my heart want to say.....Would you like to talk more and us get more detailed? If so let me know.
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The good news is that my mom is not in any pain at all. The kidney stone is not painful and is not the type that will try to pass. She has no burning or pain ever with the UTIs. No pain whatsoever.

Digital Banker, my mother has 24/7 homecare. She has excellent aides. She gets PT, wound care (for bedsores) and doctor visits in her home, which is pretty much all anyone could ask for.

Still, I'm in charge and have to stay on top of everything.

Marilyn, where did you hear of these bladder irrigations?? I can't imagine her dr would know what those are.
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Hello xinabess. I'm so very sorry that you're going through this with your Mother. I'm also so sorry that your Mother is going through all that she's going through. At 84 with a massive kidney stone that she can't have surgery on I imagine is very painful for her. You didn't say whether or not she can talk and tell you when she's in pain or hungry or things like that.
Having UTI's are very painful. You said that your Mother has an aide. Is your Mother's aide Licensed to take care of IV's? Not administer them, but take care of them and make sure the patient isn't pulling at them. If so, maybe your Mother's Insurance or Doctor could get a Registered Nurse to come out and get an IV started with antibiotic's in it to make your Mother feel better. To me, fielding calls from Doctors, Nurses, and everybody else you named might be more harm than good at the end of the day. In my experience, when I took care of my Moma before she passed, I always answered calls. I made a lot of calls too. My Moma was at home also, but I was Blessed enough that I didn't have to work. I told my husband that I was going to have to take care of my Moma and he said Of course. So I moved in with her. I wouldn't trade that last year with her for anything on this earth. She had Alzheimer's and that last year, we laughed, danced and sang to Anne Murray's Inspirational hits whom both of us loved. But when we danced, she kept telling me that I was trying to lead. :) We didn't have many days like that, but I still cherished everyday that I had with her, even the day that she passed, while I was holding her hand talking to her. Love your Mother, Pray for your Mother and ask God to help you get through these stressful days. A lot of times, people forget to Pray when they're going through hard, stressful times. You would be surprised at how much better you would feel if you would give your stress to God and ask Him to help you through all of this. That's what He's there for, to love, help and protect all of us. One more thing that might help your peace of mind, get a Security System and have it linked to your smart phone so you can watch what's going on while you're at work. That will give you a lot of relaxation while at work. That way, you'll be able to keep your mind on your job better because you can check in on your Mother any time you want to. And don't tell your aide or anyone else that you're having the Security Cameras put in because it's nobody's business.
I wish you all the Blessing in the world and you and your Mother will be in my Prayers.
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This year my mother was diagnosed with cancer, and a couple of months later my father had a heart attack. At that moment I had to leave my job everyday for a couple of hours while they were at the hospital. Finally I became so stressed I decided to quit my job meanwhile my parents health became more stable, as an only child,I felt I was unable to handle all. Now I'm, planing to start a home business, or any kind of job that gives me more freedom.
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I don't think anyone realizes what it's like, until you live through it, which is why, this site is so helpful. After 8 ER visits, 5 hospitalizations, 3 lengthy rehab stays, meaning, no personal time off for me, no sick days, no vacation day s(because all of that is taken before FMLA clicks into unpaid time) I have cut my hours. And I was lucky that my company was open to that option. Unfortunately, it sounds as if if you have a more demanding position and may not have the luxury to find a way to make it more manageable. Even with my lessened hours, I am always in a high state of anxiety (waiting for the next shoe to drop). The only thing I CAN offer is an unusual suggestion regarding the UTIs. During one of her hospitalizations, my mother was attended by an infectious disease doctor. She prescribed weekly bladder irrigations. My mother is now on Medicaid and the prescription and the home-health care nurse cost is covered. The doctor, herself, has said that is an unusual treatment, but, guess what, no more UTIs. It, at least, takes one worry off the table. I am sorry, as I can feel, from your words, what you're going through. I keep telling myself that it could be worse, but, really, living through it, and watching everyone else, continue with their lives...it's tough. I wish you the best...
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It sounds like you probably need to hire some help but have your mom pay for it out of her own money since she's the one needing care. This is the best way you can save your sanity and stay focused at work. You just can't do this alone especially if you have a dying person on your hands
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I have been where you are. It's a miracle I didn't lose my job. My boss was very kind. His wife's mom also had Alzheimer's. What you do is your best. Your best for your mom and your best for your job, whatever that may look like. You wait it out. Trust me, it gets better. It does not feel this way, but there is light at the end of the tunnel.
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Difficult situation.

If you can afford it, I would recommend finding and hiring a good geriatric care manager to assist you. (They now call themselves "aging life care professionals.") That person should be able to oversee a lot of the administrative and logistic issues. Usually, they are familiar with options for outpatient palliative care as well.

You will still need to make decisions. Also, if your mom is sick and going downhill, you will probably want to spend some quality time with her. But hiring a good person to assist you should free up some of your time and energy, which you can then put either to spending time w your mom or towards your work.

Another option to consider, if your mom is going through an especially bad patch, is to take some time off work while you sort things out regarding your mom's health. I find that sometimes family caregivers are stuck in the weeds, buried under a million details and obligations. This makes it hard to 1) step back, figure out the big picture of your older parent's health and situation, and figure out an overall game plan, and 2) set up some support structures, to allow you to manage the situation more sustainably.

Good luck!
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There's another way to handle the business aspect of caring, and that's to treat it like a business. Not all calls are taken when they come in; it's easy for someone to explain he/she's going into a meeting or something legitimate, then call back at a more convenient time.

And not everything is urgent.

I think the hardest part is getting a grasp on everything that has to be done, prioritizing it, especially the conflicting priorities, and allocate down time to handle the issues. Sounds easy, but it's not necessarily so. Different issues require different mind sets, and in caregiving it's not as easy to switch as it is with business.

I can still remember shopping center configurations and specific easements from projects worked on over 25 years ago, but sometimes I can't remember my caregiving priorities from one day to the next.

And everything's more complicated when the issues that aren't objective or solvable, such as anxiety over a parent's health, are factored in and become paramount.
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Caregivertired, you offer an interesting perspective, advocating introspection as well as balance of one's (for lack of a better word) soul, or spirit.
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I've been 'retired' for 20 years but these past few years with DH, taking care of him, it's hard for anyone to stay focused sometimes.

You are not Superwoman or Wonderwoman. Only you can set the parameters you can follow. Delegate delegate delegate.

And pray.
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Xinabess,
I understand your concerns. I have been there and have felt similar pains and worries. I realized that there was a different way to look at that situation...

Spirit colludes with your inner growth and places you in relationships and situations that identify your weak points and thus where you loose energy - places that you are unconscious of and where you need to grow stronger as a human being.

In a similar situation, I recognized that I had weak boundaries with my Mom. I looked back at life and saw that having a choice between her peace of mind and mine, I had always chosen hers. I realized that I unconsciously allowed her to make my life decisions...not because she was stronger or demanded it. No. Just the opposite. Because she was nice and sweet, and overall had been a good mother. One who had made the sacrifices for her family.

When I could no longer care for her, I had to draw a very realistic line between my life and hers. It was, and at times still is, not easy. I had to learn to create limits and weigh in the same scale what was beneficial for me with what harmed me. I have to do this with each choice regarding giving my energy to my life or her life.

At one point, we all have to learn the difficult lesson of boundaries - our limitations - to choose between honoring, respecting and loving ourselves, and what we do out of obligation, responsibility or guilt.

Our parents deserve our love, not our guilt. And we deserve to choose a life not yet lived. We do not have the right to sacrifice our life to always support one which they have already lived.

I remember what a very wise being told me: Your life's mission is to honor, love and respect your heart. To honor your spirit an soul.

Do act from a balanced place where you do not sacrifice who you are for anyone else.
All the best!

PS: It's important to look at the big picture. A situation like yours is a turning point and you have to treat it that way. You cannot help her if you dissipate your connection to your soul, your energy and your light. You must be strong in caring for yourself as well as her, or she will have no one. Crutch time is over. Choose your heart.
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Congrats on your promotion. First of all, your Mom will pass at some point as we all will. The knot in your stomach is about worry you said. You are doing every thing possible for your Mother and she is in 24/7 care. It's a natural reaction to "feel" overwhelmed. It seems you have done extremely well handling the situation up until now. A combination of new responsibilities at your new position and knowing your Mom is nearing the end would be a lot no matter who you are. You can look at your new position as a blessing so you do not get consumed with your Mom's health issues. Possibly, you feel you should be with her. The situation will not change if you are. Try to be a little gentler on yourself and breathe. One thing I know is life goes on. I am 72 years old and I am sure your Mom would not want you being overwhelmed. Make sure you eat right and get enough rest. You care and that is worth a lot. I hope my children care as much.
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Leave it to the professionals.
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Is there someone you trust that can field some of the calls? You could even pay a responsible person a small sum to take calls. Find a reasonable person you trust, fill them in on the details, add them to the doctors and insurance contact list. It could be a small job for someone to do while in their home. They can keep a daily summary and catch you up after work, or by email, contact you only when necessary.
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Call visiting nurse in your area and get Palliative care. They will help you and guide you at this time. More important, your mom will rest comfortably. Perhaps reducing your hrs. at work can be arranged. Hang in there.
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xina, I feel your question! My mom's situation is a little different, but I get pretty self conscious at work sometimes too. Only child also, single homeowner. You've got some great answers above! Many people you work with have had (or will have) something to deal with too, your mix of duties makes you human and in short snips, is good way you can connect with others at work too. gershun's words are very helpful! I can get very anxious like I'm going to make a mistake or drop something, but handling one thing at a time is all we can do.
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Xina; how much have you pursued getting mom's insurance to approve IV antibiotics at home?

It would certainly require a visit by a Home Health Nurse to set up, but these ER visits have to be costing much more!
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You really need to tell the people caring for Mom that unless an emergency they shouldn't call you at work. Work is a place to do just that, work. You can't be at your best when u take calls all day. Ask them to call your home and leave a message and you will get back to them ASA you can. Make sure you take lunch and get away from ur desk. Maybe u can make calls then. You have 24/7 care and these people should be able to make most decisions on their own. You could lose ur job.
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