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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! :-)


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Good luck with your ulcer. I see things getting better for you now that your mom is settled. Thanks for sharing a positive story and showing that there is hope.
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Update on mom: As was suggested, mom is finally stable and has been at the nursing home for 4 days. I have been able to take my hands away from mom and it feels great! I have regained perspective on care needs, at least for now. It will be overwhelming again, if I don't make some changes.

I really did make a list of suggestions on large index cards. Now I need to put some of those things into practice. Taking one at a time, we should be in a better place, in no time.

I have been scouring this site for articles. There are so many topics. It is kind of addicting. LOL

She has a wonderful roommate. They go to the diningroom together for lunch. They have breakfast and the evening meal in the room. Both of them are tired at the end of the day.

The roommate is a 91 year-old woman from E. Germany. I worked with an E. Germany woman when I was in HS. I have told mom so many stories about Hortense. Now I am hearing stories about mom's new friend.Mom has learned some german phrases. Not all polite ones, which makes us giggle like school girls. It is amazing to have mom as a friend again too and not just a care recipient. Blast from the past, if that makes sense. I am soaking in this respite.

Update on me: I am going to need some more testing done because my ulcer got better to a certain point and then has been status quo. Fortunately, for now, mom is in a good place. I have time to rest. I have time to heal. I have time to get myself taken care of.

Thanks again to those who have given me great tips and listened. I appreciate your support and your experiences. You have shared some great tips with me. Cheers!
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NeedHelpWithMom Jan 2020
Wonderful news about your mom. You sound terrific! I am extremely happy for you and your mom. 😊

Thanks for the smiles about Germany! My maternal grandmother was German. She cooked some of the German food. I love German potato salad, totally different from the heavy mayo laden American version.

When I drink a beer here, I always thank the German settlers in our community. We used to have a wonderful German restaurant downtown that remained open for many years and the German exhibit at our world’s fair held in 1984 was fabulous!

My husband spent some time in Germany studying engineering. He loved it.
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Hi,

It is all so very difficult. Unfortunately, I failed at it miserably last September. I have special needs adult daughter and that weekend before Mom’s 89 th birthday husband was away on business trip. My great younger sister had lived with Mom for years. I should have known something was terribly wrong since sister called me the night before about Mom being difficult to extreme. I went over with my daughter and Mom calmed down so I did not really see problem and we went home. Next night, problems again as I got call Mom had fallen on carpet again. Right away, my daughter and I went over. Mom insisted no firemen to assist her up so my sister and I helped her. I could tell nothing broken but mom did had black big toe which did not help her limited mobility. Things went south as at 1 am when my daughter began acting inappropriately I said we needed to go home. Honestly, my daughter was tired and never got to spend the night there in all her almost 28 years then. Mom went from bad to worse after I told her to just put a diaper on for first time that night. I feel so badly as I had no idea she would die so fast after she spent two days in ER in hospital a few days later getting checked out. First night there nothing broken per ER Kaiser doc. But after next day there when they changed her room, suddenly dislocated shoulder and slight hip fracture! Strange but we were not present to witness. Maybe Mom resisted them there. I feel badly I was not there at time but I felt pulled on both ends so to speak and so tired. Now all I feel is guilt as does my daughter. Our family is so small and smaller now. Wish I would have known more then.

So so I do not know what to say. I expected lots of Mom as I do from my daughter. My sister was so good to
mom, maybe even enabling her a bit. But she can remember being a helper and I only remember being the opposite not helping at all. I wish I could go back in time and do it better.

Thank you for listening to all this four months later.
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Countrymouse Jan 2020
Blackhorse, not helping at all? Yes, you did. You responded at once to your sister's request for help, you did what you could within the limitations of your mother's wishes, and you made the practical decision to take your daughter home when she clearly couldn't cope with this crisis.

You're blaming yourself for not *solving* an overwhelming set of problems that landed on you out of the blue. Be reasonable!

I'm sorry you lost your mother in this way. Four months is still very recent. Wishing you comfort x
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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 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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Part 2. Not knowing if this is a long term or short term placement is hard, but you want the staff to know as much about mom as possible.

My SIL came up with the brilliant idea of typing out my mom's life history in large friendly letters, having it laminated and placing it above mom's bed so that staff could peruse it as the tended mom. In included stuff about where she'd been born, how many kids and grandkids she had and the fact that she'd gone back to college to get her undergraduate degree at 65. It gave them something to chat about but also told them that mom (who was left with very disjointed speech after a stroke) was a person with a history.
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anonymous1008861 Jan 2020
I like that idea! Right now, the plan is that the placement will be short term. Mom is able to talk and loves to talk to people. She gets to know the other people as well as sharing tidbits about her life.

I will file this tidbit for future need...
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, part 1.

Always remember that you catch more flies with honey than with vinegar. Not sure if you were brought up on that saying, but I was. Folks in medical field jobs need to be held accountable, but they also have a myriad of regs they need to follow.

The fact that they HAD your husband's number does not mean that they were mandated to call. There would need to be an order in mom's chart for that and a HIPAA form with a release with DH listed as someone who could recieve this information.

So the question beccomes "how do I make absolutely certain that the designated person gets called in an emergency? Where does it need to be notated?"

With regard to the catheter, you need to find out exactly what your mom reported. Did she say she was in pain?

Find out MEDICALLY why the nurses (or aides) were unconcerned about blood/pain. Perhaps a little blood is expected, I'm not a medical person, so I don't know. You want to find out from THEIR perspective why they didn't do something.

Finally, what kind of patient is your mom? Is she easy going, timid or imperious?

You want her to get the best care possible and helping the staff understand who she is is important.

You want to ask for a care meeting when you are feeling well enough.

More later.
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anonymous1008861 Jan 2020
Hi BarbBrooklyn, more good digestible bits from you. Thank you!

I grew up with the phrase catch more flies with honey than vinegar and treat others as you want to be treated. As I said to another poster, not my finest or proudest moment. ~grimace~

I will check on the HIPPA form. I had given them the POAs for DH and me, on admission. I was not asked to sign a HIPAA form for either of us. The floor nurses, the supervisor and the DON all said that there was a breakdown in the process. As I said to another poster, there was nothing that the DON could have said to me that would have appeased me in the moment. I need to make sure that they have what we all need to make communication work better. Hopefully it won't happen again. Mistakes do happen.

The catheter is chronic. Mom and I have been managing it at home for several years now. You know it may have been you or another poster who commented that I know what we do and expected that others would too. False expectations. Mom clamps the cath during the day and has bag during the night. More dignity for her since she normally goes out to shop and visit.

Mom is easy going and loves people. She has a killer sense of humor and is remarkably resilient to challenges. She will always give people time to problem solve, but when her patience is at end, she will become more strident in her complaints. It has become a "she said/she said" situation. Kind of a deadend conversation, so I have decided to let that issue go. The future is where we need to focus. If that makes sense.

From a personality point of view, mom has wonderful things to say about the staff of the SNF. The technical knowledge and application of that knowledge is where our concerns come in.

I think someone else said that the nursing staff can only go so far in treatment and I respect that. The issue was that the nurses kept saying that they wanted to have the catheter investigated by the doctor Thursday. Mom's catheter was causing significant pain, Wednesday.

I will put a care meeting on my weekly calendar, as a sticker that can be moved to an agreed upon time.

Looking forward to Part 2.
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95% of her artery and that was never caught at the first time she was in?

You have decisions to make. Is Mom in SN for rehab. Medicare is paying for the first 20 days? Then 50% up to 100 days. If so, I would keep her there as long as possible. Take that time to regroup.

I would ask the doctor or the DON what kind of care is needed when someone has CHF. I know my neighbor had to have the fluid drained every so often. How much will Mom be able to do for herself. Will she need help with her ADLs. Is ur Mom the type of person who does what she is told? That makes life easier.

Now doctors. Does she really need them all. Once my Mom was stable, I cut back on Dr. visits. She had her PCP who had her coming every 2 months. I even had the staff asking me why she was there again. She was on two meds, Cholesterol and B/P. By law, only needs to see Dr. every 6 months. When Dr. asked her why she was there I told him he told her to come back. After that she didn't go back unless sick or needed refills. Another dr she went to for her stomach. After numerous follow ups with no problems, I cut that visit to once a year. Same with her thyroid doctor. Once she was stable, it was a test every 6 months and only going when she needed to. With her problems now a Cardiologist is important.
I would ask your PCP if he can handle most of Moms problems. Cutting down on the need of multiple drs.
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anonymous1008861 Jan 2020
Hi JoAnn29, 95% blockageof the main heart artery and her workup was negative. The interventional cardiologist said that mom was within 3 minutes of dying when he got her to the cath lab. She was in CICU for 9 days. She was on the vent for 6 of those 9 days. Can you say stressful and frustrating that it was missed? This type of blockage is aptly named, "Widow Maker".

Mom is in the SNF for rehab and Medicare is paying for the first 20 days. I have received paperwork from the financial office and what you quote is correct. I am taking her discharge date from the SNF very cautiously and one day at a time. I agree that I need time to regroup and get some care decisions in place. Mom is still at hospital and will be at least until Friday. I have urged them not to discharge her too quickly as she has bounced back there since November.

Mom is very compliant with orders, if she understands the reason for them and I agree that this makes life easier. She is so weak that she currently needs max help with ADLs. I can't predict how much she will be able to do as she gains strength. That is TBD. Will need to plan for that if/when she comes home.

I find that mom's physician visit frequency is appropriate, once she becomes stable. It has been an anomaly that mom has been a frequent flyer since November. Because the heart blockage was "hidden" and didn't show up in the tests, the test results were treated, not the patient and her symptoms. We like to stay out of the doctors' offices as much as possible because of the illnesses there. LOL Gotta find humor were you can, I guess.
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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 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'm sorry you're feeling unsupported here because I'm sure that isn't the intention of anyone who has answered. I'm afraid that for most of us our "tough love" is really just pragmatic hindsight; been there done that have the T-shirt. It's a little like learning to ride a bike - yes there will be crashes and yes, there will be scraped knees and elbows but the alternative is to keep chasing that bike down the street... you know?
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anonymous1008861 Jan 2020
Oh cwillie, I don't mean that I am feeling unsupported and am sorry that it came across that way. I am at a point where I have asked for help and am glad of that help. There is a lot of experience amongst the members of this group. Many of you have provided a theme of information that I am able to cluster together. Then there is more information that needs to be sifted separately.

It all needs to be processed in managable amounts in order for me to put the suggestions into practice. The self protection that I spoke of was taking some time away from the computer to run the information by trusted friends who know me and acted as a sounding board for me. I also have been speaking with the SW at the NH and the DON. Now that I am speaking their language a bit more, things are moving along better.

Long story short: I am grateful for the information and experiences that you all have been providing. I am pretty resilient. My feelings are pretty hard to hurt for long. I see situations from two sides and the truth is always somewhere in the middle!

LOL I have crashed the bike often enough. I am ready to get off and push the bike for a while. Might still bump the shins a bit though.
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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 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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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 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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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 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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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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You've got 2 deficiencies in this SNF that want dealing with. Not following procedure in notifying family member when mom was taken to the ER and not providing proper catheter care.

They need to step up their game if they want to keep mom as a patient.
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anonymous1008861 Jan 2020
BarbBrooklyn,

This is something thst I didn't know about. Thsnk you for the information. When I blew up, in anger, the DON, told me thst they were sorry.
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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 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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Tiki, I'm so sorry about the loss of your brother.

With our NH situation, I found the it was IMPERATIVE to get the DON and SW (also the unit manager) in the same room with me and to hear what was "wrong" about the care mom was getting. It helped to be very specific with dates and times.

Do not ever think that substandard care is all you can get. Be nice, bring donuts, but be firm. They can and will improve her care or you move her. Make sure you have the Ombudsman's number and use it if you need to.

With regard to mom's medical care in general, have you considered having her seen by a geriatrics specialist? My mom got much better, more attentive care from her geriatrics doc than from her regular internist and her cardiologist.

Good luck and heal well!
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anonymous1008861 Jan 2020
BarbBrooklyn, Thank you for sharing so much knowlrdge and actionable steps with me. I am going to get index cards and write them down when I get out of bed. ~GRIN~

I believe in being an active participant in things and know that I need help, I don't like to complain about things unless I am willing to do some work too!

I am the type of gal that thanks God for that half empty glass and then gets a smaller glass. I thank God for the full glass. I trust that He will refill the glass when it runs dry.
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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 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 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 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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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 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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First of all, let me say welcome!

You certainly have your hands full with your mom and it appears you have your own health issues as well.

You ask how do you keep from having things crash around you? You can’t. Unfortunately, sometimes crashing is part of caregiving. I am sorry that your mom has had so many struggles with the fluid in her legs and heart issues. I personally think she may be ready for more care than you are able to give her.

I do not like that they sent your mom home and asked you not to bother them. What kind of doctor does that? Your mom ended up needing care. Are you happy with her doctors and the hospital? I would find a new doctor if that happened again.

Why don’t you speak to a social worker to see what you should do? Were you pleased with the overall care that she received at the skilled nursing facility?

Best wishes to you and your mom.
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anonymous1008861 Jan 2020
Hi NeedHelpWithMom,

Thank you for the welcome, well wishes and thoughts.

You and several others have affirmed that I can't stop things from crashing around me. I see an emerging theme for us to work with professionals to develop my mom's care.

As to my satisfaction with interaction with industry providers, I have mixed feelings. We have had to work really closely and intensively with providers to get anything done,

As we move forward, I can see that the facility social worker is an excellent resource.
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Sweet Tiki, I wish I had some magic words for you.
I am a new caregiver for my Aunt.
Never saw this coming! Spent 6 weeks away from my hubby and home after my Uncle's death.
During that time I ended up in the ER with what I thought was a UTI turned bad. Turned out to be a full blown anxiety attack.
Even though I am dealing everyday with my Aunts issues, I am learning that I absolutely have to do things to help me relax.
Try to find time for yourself! Massage, yoga or whatever it is that makes you happy!
You can't help your mother if you're incapacitated!
She's blessed to have you!
Try to make time to relax and realize that in turn, taking care of her could be a blessing to you.
I'm digging deep to not lose heart.
Dig with me!! You're amazing!
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