Parents caring for the parent support thread (Part 1)

Good warning @snowball. Every transition to and from hospital or rehab means errors and added meds that aren’t needed. I think the last 6 months have been the only time in several years that my mother’s list was correct. And that means that when our loved ones go to the hospital, they use that list with the errors.

Case in point. Someone used ativan at one hospital when my mother had a nasogastric tube, but stopped it because it increased her confusion so badly. But they didn’t take it off the list. She was transferred to another hospital and I asked why she was so groggy. I had them take it off!

It took me a long time and all kinds of bureaucratic frustrations to get Prilosec taken off her list! Etc.

I also meant to add I also saw duplicate meds in dad’s possession. So urologist at the hospital gives one medication, but when dad goes for a follow-up visit with his urologist, this doctor sends in another medication to the pharmacy. Does he tell dad to stop the one from the hospital; not that I am aware of, so dad thinks he is suppose to take both, even though they are for the same problem. This also happens with the cardiologist with multiple heart meds.

Thank g-d for my dad’s personal cardiologist who decided to take on the roll of primary care doctor. He told dad to come to the office with all his medications in a bag. The two of them with my mother when through the bag one bottle at a time and came up with a list of what should be taken, and what he needed to discontinue. That is not to say dad might not have mixed up medication toward the end, but the duplication of medication was corrected.

In today’s time without the primary care doctor being the gatekeeper, more and more patients jump from specialist to specialist, are seen my many different hospitialist; one doctor doesn’t know what the other is treating or medications given.

On a side note, my own ENT sent in cough medication for me last week. I have taken it before and know it is to be take 2-3 times a day. It is a pill version that is not better than over the counter, just easier to take. Get to the pharmacy and my pharmacist says he received the Rx and was a bit baffled by the orders; it was written at the higher dose at every 2-4 hours and sent 97 pills!! My pharmacist knows we are a medical family and I knew what to do, but what had this been someone that didn’t know? This person thinks-doctor said to take it every 2-4, so that is what I will do. I ask that he only give me 20 as I only planned to take it for a couple of days in the morning and bedtime. I did wonder why the pharmacist didn’t call the ENT’s office to ask if these was an error, but I didn’t want to question his judgement. That said, don’t think anything horrible would happen taking more often as it is an over the counter dosage, but still.

HaHa! My FIL was hospitalized overnight and the hospital took in his medical list from the AL. They then proceeded to give him every med on the list, even the as needed meds. This means he got every possible medication you could take for constipation, softeners, laxatives, everything that he is ever offered was given.

The next day when we went to check him out was a happening my husband will never forget, FIL emptied himself in the bed, it just kept coming and coming. The staff left my husband to clean him up. All we could do it laugh, everyone including FIL. It was memorable and also instructive as sometimes those optional meds could cause serious issues not sad/funny ones.

@somemom that is a great example of the way the “whisper down the lane” medication communication can backfire (no pun intended). My mom was on ome stool softeners and Miralax while she was hospitalized for 3 weeks. Those orders followed her back to the MC.

The MC was calling me a lot to tell me mom soiled herself and they had extra bagged laundry for me etc. Finally I asked to see her med list and then asked if they could have the PCP at her facility remove the stool softeners, etc.

I don’t have an MD but sometimes people think I do. Me, I just call it common sense!

Dad won’t sign the DNR order. If he doesn’t, the social worker said Medicare won’t pay for hospice. I think he’s making a mistake but it’s his decision. He’s coughing a lot. Hospice is bringing over a suction machine tonight to help get rid of his phlegm.

I don’t think your SW is correct. We had hospice patients without DNRs frequently. Probably depends on the program. Most patients will eventually sign as they learn more of the problems it can cause for the elderly.

Electronic Medical Records are “supposed” to eliminate the confusion about what’s prescribed. Unfortunately, a chain is only as strong as its weakest link.

I know my initial chats before a med appt are not with a nurse. It’s a medical assistant. It’s been futile to try to get them to clear old unused meds out of my records.

@MaineLonghorn I guess each state, and/or facility is different. In our case, the ER doctor asked my mother and I, although dad was very capable to answer himself. If he signed something himself, I am unaware. That said, maybe he did when I wasn’t in the room as I wasn’t there when he got the DNR hospital bracelet.

EMRs are dangerous. My EMR keeps including drugs I haven’t taken in years, or something prescribed for a temporary problem, and we just can’t seem to get them off the “current” list. Epic and other companies need to do better, and the physicians and pharmacies need to insist on better reports. My mom is on top of her meds and what she should be taken, but she is definitely in the upper 10%, maybe upper 2% of her CCRC community on mental acuity. Most of the residents can’t process all the data, they take what they are given, or else just wing it with what they think they need.

My mom also will not sign a DNR. 4 ft 10, 100 pounds, 94 years old. CPR would be cruel, but she just can’t approve of not doing it. She was a nurse, she knows what this means. But DNR is a very hard decision.

I just need to vent. I’m currently down with my parents. First the good news, my mom still recognized me. Whooo hoooo! She seems peaceful and content. Lots more neurological tics, tremors, and contractures but it doesn’t seem to bother her at all. Staff are absolutely lovely with her. I’m trying to speak to her more in Italian as she’s losing her ability to understand English but she just smiles and nods when people talk to her even if she doesn’t understand the words. I’m happy for her that she’s comfortable where she is.

My father on the other hand is day drinking, eating sweets over real food, having bouts of incontinence and his house becomes filthy within 24 hours of the cleaners being there (they come once/week) because if he drops something he won’t pick it up. He’s still managing all his own ADLs and won’t discuss moving to an AL. He’s stubborn as an ox and it will take an emergency to get him to move.

Trying to be as zen as possible that alcoholic or not, he gets to make his own life choices but I’m bracing for the crisis that is going to come eventually. Going into crisis mode from 1000+ miles away isn’t ideal and I’d much prefer being proactive. I know this is a struggle most families have and I’m not alone.

I hope H and I are more willing to plan when it’s our time! (At least my in-laws are planners)

Thanks for the ear.

@momofsenior1 hugs!

I have not been to this thread for several weeks. Wow, so many of you going through so much. @walkinghome I am sorry about your sisters. When my brother died, they had mild-moderate dementia and their emotional response was muted due to the disease and they dealt with it better than myself. With my dad’s severe dementia, and mom’s before she died, it doesn’t matter what I tell them. Dad doesn’t even really remember his wife of over 60 years. So you are the best judge of what to tell your mom. I’m sorry your dad is difficult.

@HImom I’m sorry to hear about your dad. I feel we are sisters in the parent dementia journey. I think the DNR is wise and your brother should know that if you do CPR on your dad, he would have a slim chance of recovery and he would be that much weaker. A large family makes it easier but sometimes harder.

@MaineLonghorn what a roller-coaster for you and your family. I am glad your son has been such a comfort for all of you.

I am currently on faculty at a school of nursing and I teach adult and geriatric nurse practitioners. I just had a class discussing poly-pharmacy and how to ID at risk meds and how to go about sorting medications for review with the patient. I have a 6 section “sorting hat” tool. Meds you need, meds you don’t, duplicates, high risk meds that can be substituted to lower risk, meds such as opioids to try to bargain, meds the patient doesn’t want. My message is that they will need to be the gatekeepers and always reconcile medications. Hopefully our future care providers will be well trained.

Well, had a tearful family meeting with the treating MD at the hospital. They’ve recommended and we have finally agreed to stopping blood products after two weeks as they aren’t helping and are actually hurting him.

We will be switching to comfort care the includes no more testing other than blood pressure and oxygen. He still gets breathing meds and oxygen.

My kids are flying in tonight and tomorrow night. I told dad they’re coming. He nodded.

These are difficult times @HImom but your family is working together to absorb the information and help your dad through this stage. Best wishes.

@HImom sending hugs. This was the most difficult part for everyone. May you draw strength from the love and support of your family and peace seeing your dad comfortable. Glad your children are flying in.

@HImom- wishing you and your family peace. Good that your kids can be there, too. As hard as it was, I was grateful to caring Drs who were direct about what “time” it was; made appropriate plans that would have suited my parents’ wishes possible. Sending good thoughts your way.

Hugs to you @HImom, and all of you as you struggled through. Hope your entire family can derive comfort and peace from each other.

Well, dad is now in the next world or realm or whatever or hopefully heaven (as he was a devout Catholic). He passed very peacefully and simply stopped breathing while the priest was administering the last rites.

Thanks for everyone’s help. We will help mom transition from living with dad (him calling the shots) to being a widow. She’s never lived alone her entire life. She lives in her 2 bedroom CCRC and one of us will sleep in the 2nd bedroom until she adjusts (if she does). In the meantime she has been living in my home for 2 weeks.

@Himom…so very sorry. Wishing you and your family peace and wonderful memories…

Condolences to you Himom. It’s a sad time.