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Hi everyone. Newcomer here. Have spent the last hour reading various entries... have added several votes for helpful comments. Wow, you all are here for one another.


I have been caring for my mom for the last 3 years. Initially this was pretty simple; not anymore! She is a medical nightmare with so many doctors that I have a folder on my phone for just them. LOL Saves time scrolling down the list.


At Thanksgiving, my mom had some vague chest/stomach problems. My mom was in and out of the hospital the entire month of December.


Hospitalist and cardiologist told me to, "take her home and get over it; stop bothering them. Well, good enough, but mom kept having chest pain and I kept taking her back to the hospital. On January 2, 2020, my mom had a catherization that showed her left main artery was 95% blocked.


My mom was transferred to a medical center where the artery could be stented. She was in hospital for nearly 2 weeks with complications. Mom was sent to a SNF, Monday, with a "little extra fluid." This meant swollen legs and belly.


Wednesday, I was seen by my PCP because of abdominal pain and vomiting. My PCP thought I had gall bladder ailment and she sent me to the ER. Turned out that I had an ulcer. In the grand scheme of things, this was great!!! No surgery!!! I had told mom that I would not be in that day as I was not feeling well. Mom called me while I was in the ER to say that no one was taking care of her painful catheter and she was now seeing red blood in her catheter bag. I called the SNF nursing staff and explained situation. Catheter was changed, so all good there. Phew!


The SNF doctor came in Thursday and said,"Let's watch leg swelling for a day or 2." Mom had an appointment the following day, Friday, with her regular cardiologist. Problem solved. LOL


Reason for cardiologist visit: hospital follow up and symptoms of heart failure. Mom had 10-15 pounds of extra weight over the last week. Her legs were swollen to the point that compression stockings were too tight & mom couldn't sleep in a bed because she got too short of breath. He doubled her dose of water pill and sent her back to the SNF.


Later that same night the SNF staff called EMS and sent mom to hospital for fluid overload and pneumonia. The SNF didn't notify me that my mom was in hospital. I was having a sleep study. I had told the SNF staff that I was not available and that hubby had my phone and was listed a 2nd contact. Saturday morning, mom left a voicemail that she was in hospital.


Monday morning I went to SNF and had an explosion followed rapidly by a meltdown. I was finally ready to have a respite and couldn't seem to find anyone, in the medical field, who was on board to manage things so that I could leave mom in their "care" and take some time to regroup.


So finally I come to my question: How do you all keep things from crashing down around you when you finally take your hands away? I can't imagine that I am unique in this experience. LOL It is too crazy to make up, so there has to be other people who have had the same sort of things happen.


As misery loves company, I would love to hear from you, how you recovered your composure to "take your hands away again". Thanks for reading! :-)


I think when you go hands off you have to be hands off. That means once you've passed the baton to whomever, be it respite care, a relative, what have you, you need to be there for yourself, be present for you. If you can't pass the baton and trust that whoever has it is doing the job then find someone you can trust otherwise you'll worry and wonder yourself into a fit and you won't get the rest you so badly require.

If it crashes when you are not in charge so be it but get your rest. You won't be any good to your mom if you collapse.
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NeedHelpWithMom Jan 22, 2020
Great advice. If she decides to let go, that means letting go! Can’t let go and still try and be involved, which is pointless because she won’t be focusing on her own needs. Others can take over.
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Is the medical director a geriatrician or an internist? In my opinion, that your mother is a "frequent flyer" indicates that no one is really looking at the whole picture. Try to find a long-term care setting that has a geriatrician or, at the very least, a geriatric nurse practitioner.

Nursing management and medical management are different. There is only so much a nurse can do when the patient's medical management is reactive rather than proactive. Geriatricians are much more proactive (usually).

Also very important, your ulcer is a sign that you are under stress. Heed your body's warning. You can advocate for your mother via a telephone call just as easily - perhaps even better - than in person. In person, you are being "talked at" by "experts" whereas over the phone, you are speaking from your space, they cannot see your facial reactions, and you can have notes in front of you to ensure that you are asking the right questions, staying on message and taking notes.

Welcome to our community. You can do this!
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anonymous1008861 Jan 22, 2020
Hi NYDaughterInLaw, The medical director of the SNF is a geriatrician. This fact is likely the reason that she didn't jump to react to mom's problems. Mom had been admitted Monday and seen the one time by the geriatrician before mom ended up back in the hospital. It takes more time than one quick visit to get to know the big picture of a patient.

We were supposed to have a family conference last Friday, but was delayed because of outside cardiology appointment. It must be difficult for the staff to deal with the interruptions of their routines.

I have to say that I appreciate your suggestion that talking to the providers via telephone is a good option. I am finding that it is my new best friend. I do have a list of things that I want to ask. I also collect items from talking to my mom. Using this list, I can ask the questions and jot down notes as the clinician is talking. Not driving to the various places is a bonus, as I have large and small animals at home. My house does not have central heat, so being gone in the winter is not optimal.

Thank you again for reaching out and providing me with some accessible information and the welcome to the community. I appreciate you comment that I "can do this". I feel more capable some days than others! The ulcer was definitely the tipping point for me to seek an alternate way of doing things.
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I think I probably wouldn't try to take my hands away until my mother was stabilised. Your mother isn't stable yet.

If your own health needs prevent you from co-ordinating and monitoring her care at the moment, and your husband has his hands full supporting you, is there anyone else who can step up as your mother's primary caregiver for the time being?

Your mother was living independently at her own home until November, was she?
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anonymous1008861 Jan 22, 2020
Hi CountryMouse.
Thank you for reply.

I understand your point about my mother not being stable for me to take my hsnds away. The inconvenience of my health needs showed us holes in the role of primary care giver. We had no emergency plan. Emergency plan must be put in place, as we develop a care plan for long-term care.

My husband is second contact. He is POA, second to me, He would have responded to the phone call, 10 pm, and met mom at ER. He was not notified. They had his cell phone number and mine.

Three years ago, at 81, mom lived in an in-law apartment above us. We cooked dinner for the three of us. Shopping was a social time for mom, me and friends. Mom had her own laundry, cleaning routine, pet care and drove locally.
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Tikisma, nobody is at her best when she is ill and stressed out and anxious about her elderly mother.

The DON clearly acknowledged this point and made allowances for it when she apologised to you after you had "blown up" at her "in anger." She gave you a soft, conciliatory answer.

You then yelled at her for apologising to you.

I wouldn't, myself, have warned a relative in your position against further verbal abuse; I think I would have asked her what I could do to move things forward. But then again... given how you felt at the time I'm not sure that would have helped either, would it?

So. How do you think she should have responded to you?

I'm not criticising you, I'm genuinely using this as a training opportunity: hopping-mad relative, what to do.
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anonymous1008861 Jan 22, 2020
CountryMouse, thank you for reaching out to me for a teachable moment. Right now, I am feeling quite battered and can't give your question the attention that it warrents. Since someone gave it a helpful answer vote, I feel that I am doing you a disservice. Right now, I feel the need to get a bit self protective. I regret if that is seen as bitting a helpful hand. Thanks again.
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Part 3. "Breakdown in Communication". Oh yes....

There was the time mom's nurse called to say she had a collapsed lung. I sprung into action, making lots of demands, noise and informed mom's pulmonologist.

We had a care meeting a fee days later and I mentioned the collapsed lung. The DON and SW looked shocked and started scrolling through mom's records.

She did NOT have a collapsed lung.

I totally lost it. I mean, big time. My brother still talks about it. I was foaming at the mouth.

The care team made a plan with me by which I ONLY talked to the unit manager. For 2 weeks, she called ME everyday to discuss mom's condition. After than we eased off to 2x per week. The DON communicated with mom's pulmonologist and explained the confusion ( he had advised us to get hospice involved). And they fired the nurse who informed me incorrectly.

Look, nursing homes are imperfect. Your loved one will never get the 1 to 1 care that a well trained, well rested family member could provide, but we all had to work and pay bills and mortgages. None of us had medical training.

Overall, mom got MUCH more expert care than any of us could have given her at home. They picked up pneumonia, UTIs and other stuff when I couldn't see anything amiss. But often, that concern and good care didnt get communicated to me.

Looking back, I probably should have been a lot more laid back, accepting and rolled with the punches more. And as CWillie says, they are NOT going to do stuff the way you've done it at home.

Stick around. I think you'll find us useful to hang out with.

Hope you and mom are BOTH feeling better!!
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anonymous1008861 Jan 22, 2020
Thanks, BarbBrooklyn! Yes, both mom and I are feeling better. I appreciate all the information provided by everyone. I have found the forum very helpful to hang out with!!!
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Do you have any siblings?

When your mom had problems with the catheter, did she use the call bell? (When my mom was first in a facility, she would call US instead of the staff).

Tall to the SW and the DON at the SNF about the communication issues you are having.

Welcome!!
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anonymous1008861 Jan 22, 2020
Hi BarbBrooklyn,
Thsnks for the welcome and reply,

I had an older brother. He died 3 years ago from acute leukemia. His widow was and is hands off. She is just waitimg for money when mom dies. Her three childrenL same. At least there is no lack of or miscommunication there!

We have a daughter and SIL who visit Grammy regularly and will help us with things.

Mom had rung her csll bell, repeatedly. The nurses told her thst the doctor would be in the next day, Thursday, and would check the catheter then.

I have since connected with the social worker and DON at the SNF
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I'm surprised the ER doctors told you to stop bothering them -- don't they love that Medicare $ when elders have ER visits? It's all that medical utilization by elders with the lower Medicare reimbursement rate that drives up the costs for the rest of us.

"I had an older brother. He died 3 years ago from acute leukemia. His widow was and is hands off. She is just waitimg for money when mom dies. Her three childrenL same. "

What do you expect from her, though, as it isn't her mother? And is she so sure that SHE will get $ when your mother dies? (My H didn't get anything from my parents' trust, and I won't get anything when my MIL dies -- often it's the grandchildren who get the $ in that case, bypassing the surviving spouse). What is it that you expect them to do? How old are the children? Are they all local?

I'm not saying you don't need help, because you do.
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anonymous1008861 Jan 22, 2020
CTTN55,

ER doctors don't like any frequent flyers, regardless of the payor.

As to seniors driving up the costs for te rest of us, this seems an odd observation in this setting.

I was framing my sister in law's involvement within our family's culture and social norms. As to my expectations of her, I have none.

All the grandchildren are adults. None have children or full time jobs. They call mom when they need money. They take, all that they can when they visit, which is rare. As to my expectations of them, I have none.

As to the financial arragements made by my parents, I have no say in that and don't believe that I should.

Your writing style is frank. I have responded in the same vein. I have received your message with an open heart. My hope is that you will do the same.
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Hi xrayjodib,

Wow, 6 weeks away from hubby and home is brutal! I talk about going into crisis mode with my mother. I am assuming that you had uncle's affairs to settle, while trying to start on your aunt's immediate needs. Caregiving seems to be a moving target. The target is in a fluid enviriment, ever changing. How are you coping now?

I am sure that my ulcer was helped along by the growing anxiety and even panic that was mounting since November. I can relate to your panic attack that led you to an ER visit. I have come to realise that I have to take more care of me! Defintely a work in progress. ~grin~

We are both blessed to have a loved one to care for. On good days we can relish that fact. On tough days, I will think of you and yes, I will dig deep to not lose heart. And yes, we are a blessing to our loved ones! {{{{hugs}}}}

We are both amazing in our capacity to love and provide care to our loved ones. There are so many testimonies on here that show caregiving at various levels of experience. I find it uplifting and an honest show of the reality of caregiving. I am humbled and grateful for this community.

As the dust settles, half heartedly swips at the dust on nightstand, I will become more intentional with chores and then move on to other things that make me happy. I feel like the turtle that is coming up for air and sunshine after a swim. LOL
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Is the SNF a permanent thing or do you still have hope that she can return home?
In my own experience the initial contact with the nursing home was awful, but in hindsight I can see that was partially due to my own skewed expectations and inexperience with the system and their lack of familiarity with my mother and her needs. The words culture shock come to mind.

DONs and charge nurses can take a lot of abuse from family if the allow it so it is no wonder some have developed a hair trigger in shutting that down, which of course can make you feel dismissed and unheard. The key to surviving life in any nursing home is understanding this is a facility and there are rules and systems that everyone, both staff and residents, have to work within. One of those is the care conference - ask for one. Take someone with you so you don't feel out numbered.

As for how to learn to trust that your mother is in good hands - it will never happen if you keep looking for perfection, you have to be able to accept that she is safe and her basic needs are met and that her age and health conditions will lead to an inevitable end. You can't fix old age. You can't change the SNF system. You can't make everything better, you just can't.
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anonymous1008861 Jan 22, 2020
Hi cwillie. I have to tell you that I appreciate the candor that I am finding in this forum. It is sometimes tough to swallow "tough" love, but it is needed. I laughed when I read your post added to the many of the other voices. Apparently, I have made more missteps than good steps in this foray into caregiving.

Guess I need to double down and do some soul searching for where I have gone off the rails and fix me before I expect anything from anyone else. Thank you for the reality check!
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Tiki, welcome to this forum! But, I'm a little sorry that you're here because it's like a club no one wants to really be a member of. My only comment is that you can never sit back and let the medical community "take care" of anyone. My mother was an RN and she gave me 2 pieces of solid healthcare advice: always see a specialist and you are your own best advocate. So, as you move forward in your own and your mom's care do keep copious and detailed notes of what was said and done, don't leave any medical meeting without total understanding of options, outcomes, possibilities, etc., and do follow up. There is a way to be helpful to medical staff with the input of info and there is a way to come across as a know-it-all, busybody, annoyance, etc. It is often a fine line. I wish you great wisdom and peace as you provide TLC to your mom!
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anonymous1008861 Jan 22, 2020
Thank you for your response to my question. I will re-read it when my head is not bouncing quite so much. I have received much advice. Thanks agin. AYou certainly have your hands full, from reading your profile!
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