If your mom has a history of a stroke when stopping the coumadin, I would not stop it. However, something to ponder, is the scope for a clearer look at the neoplasm and/or an attempt to remove it? If they try to remove it and cannot through the scope, would you then be asked for permission to remove it via major abdominal surgery? In that case, the increase for bleeding while on coumadin is almost a given. Also, at this point with the possibility of metastasis, would you opt for major abdominal surgery? Is the neoplasm a definitive diagnosis? Would a PET scan be recommended? If that was done, it would give you a clearer direction depending upon whether or not there was a metastasis.
Why I am asking is related to what my aunt and cousins are facing with my 87 yr old uncle. Hx of prostate and kidney cancer, diabetes, severe coronary artery disease with heart failure, moderate dementia. He is a DNR, has been having blood transfusions over the summer, (being taken by ambulance from the extended care facility to the hospital and back again), they were holding his count for about 4 weeks, now need to be transfused every 2-3 weeks. They are not ready to say goodbye. He was diagnosed 2 weeks ago with metastatic colon cancer. The surgeon wanted to perform a colonoscopy and remove the neoplasm. When I asked him what would happen if it could not be removed via the scope, the surgeon replied, “we would ask your aunt if we could open him up”. I discussed this with my aunt and she said her main goal was pain management. So, I just present some possibilities for you to think about.
Hugs @compmom. No advice but sending good thoughts for your mom’s comfort.
My mom “fell” again at her memory care unit. New nurse working today, called my aunt instead of me. Mom was unsupervised in the courtyard and was found sitting down in the sun. Her BP was “low”. 97/70 - which is actually her normal baseline. But, they called the squad assuming she fell. My mom refused to move when the paramedics arrived so their interpretation was that she was in pain. Um no, she just didn’t want to go to the hospital!
Thankfully I got to the ER nurse before they sedated mom, they ran minimal tests, and she is already back and doing fine. I’m beyond angry that the staff don’t follow their own policies and procedures. I’m heading down this week and have already asked for an in person meeting with the DON but I probably need to go up the ladder as well.
The aide that was supposed to be overseeing the courtyard was on break so there was no staff with the residents. How about locking the door if staff go on break?
I need to talk to my dad about possibly hiring a sitter to be with her on the weekends since everything seems to happen S/S.
Mom of senior they always seem to call ambulance for liability reasons. The absence of staff sounds like a serious issue. Hope your mom is ok now. Please pardon all my absurd typos in previous post. I am not good on phone! There’s no way we would okay removal of the neoplasm. It might not even be possible. It extends through colon wall into pelvis. The question now is whether to do a sigmoidoscopy on Coumadin to just look. I said no to biopsy because bleeding risk would keep her off Coumadin too long. As I said, she had a stroke a few years back when she was off fir 5 days for a minor procedure. Palliative care consult tomorrow and asking teaching hospital if there are other options they could offer. Also hope hospice does not need 100% certain diagnosis. My mother wants to do. Nothing including radiation to reduce size and pain. Step by step!
@momofsenior1 nothing more frustrating than an unnecessary ER visit! You are correct, if there is supposed to be staff in the courtyard, and there is nobody there, the door should be locked. What is the ratio for your facility? Are they meeting the promised ratio when she was admitted? Strange they would call your aunt if you are down as the primary contact. I do understand the impetus to send to the ER, as that is the default when you suspect a fall. This is the reason I have a “do not transport to the ER” order from the doctor for my parents. It must be so frustrating to be so far away. Certainly, my parents being a mile away has helped my stress tremendously.
Staffing is such an issue at all care facilities. One reason I like the personal care home where my parents are, is that staff cannot “disappear” in a smaller home. But, with the increased responsibility, turnover is an issue. We just had a cost increase of over 20%, part of which is going to increase pay. I hope it works to increase sustainability in, what I consider, an ideal model for the demented population.
@compmom I think a sigmoidoscopy can typically be safely done on coumadin. But, if it would not change her treatment, certainly not worth the risk, especially with your mother’s wishes. Good luck with the palliative care consult. Palliative care does not need any sort of definitive diagnosis, it is hospice which usually needs not a diagnosis, but some sort of assessment as to likely length of life.
I have had a sigmoidoscopy and it was worth than labor. One doctor said he could nick the tumor and cause bleeding, another said it was safe. I am looking into a PET-CT as an alternative, not only to assess the known mass but get some idea of grade and spread.
I’ll talk to the palliative care consultant today about palliative care versus hospice, two separate programs at our local hospice. At the moment, pain relief is a focus but we could use the extra help of the hospice team (and I need support as I encounter aggressive surgeons who want to do more than we want and imply I am not doing enough!)
We did decide to do an enema test today to make sure there are no perforations. CT showed that the previous perforation was walled off, but no one is sure, and there could be other perforations since the mass is so large.
Pain meds can constipate and a hard stool could cause further perforations. So need help with that. Right now we are only using Tylenol and heat.
My mother seems excited and talks about going the way her two friends went. Both her best friends refused treatment, stayed out of hospital, and died the way they wanted to. That said, I still want to find out what radiation is like because the mass could be reduced to give her some months.
She says she will do that if there is a great grand baby on the way but don’t see that happening. She has been obsessed with this and offered $1k to one of my daughters to have a baby. My daughter told her it would have to be a lot more!!! Family joke.
My mother thinks that her assisted living room is somewhere in the hospital and wants to know which elevator to take to get to it. She is very anxious that they will take out all her furniture and put someone else in. I gave her the key to her room and told her no one else could get in.
Such a difficult journey. Hope that the palliative consultant will offer you options to keep your mom comfortable and decrease her level of pain. It may be at the point to consider opting out of further diagnostic procedures, especially the sigmoidoscopy. Something that I have been telling my aunt and cousins who want to give my uncle a few more months of life is that during those months the cancer will continue to grow and metastasis, increasing the level of pain and perhaps even new side effects. This is a heart wrenching journey for loved ones as well as for the patient. Wishing you clarity, support and options from the medical team and peace.
sending lots of hugs for choices and help in getting good information in those choices. It is tough.
It is really tough to be far away when they want to whisk someone who doesn’t understand what is going on off to the hospital all the time, too. One of the great things about having hospice involved is that they could come ad stop the calls to the ambulance. Even though hospice is usually thought of as short term, I had Mom on it for 18 months… the nurse tracked things like falls, weight, and the amount of food she started to pocket. It all showed continuing downward trend. When hospice was involved, Mom also got off all (except thyroid) meds, including coumadin and she maybe had more ministrokes, but honestly I think she was having brain bleeds anyway. There is a lot to balance INCLUDING yourself/life.
@compmom , so sorry for all of this.
My FIL went on hospice in August without a real 6 months left diagnosis. The Dr felt that his issue (heart valve/pumping) will eventually result in death, but 6 months vs. more was too difficult to determine. With palliative care, there would be more ER visits and interventions that FIL doesn’t want.
My own experience with radiation (breast cancer) is that it is exhausting. My brain was toast - couldn’t follow a plot to save my life, and it got to the point where I just wanted to sit. It requires daily treatment and getting there and back took longer than the treatment itself. It’s a tough decision to make
The apartment upstairs is so funny. When my mother was in her adult family home, she was sure there were additional floors above with more rooms and people. FIL was sure the hospital MIL was in was just upstairs from their AL apartment.
Hoping you get answers and can make informed decisions.
I made an appointment at teaching hospital in 10 days so I could get my mother out of the local hospital. I figured they’d let her out if there was some other medical facility responsible for her!
I made an appointment with hospice for palliative care consult and met with the palliative care nurse practitioner at 2pm and we discussed hospice (yes, she is eligible and can be recertified every 6 months if declining). The NP talked with my mother who is confused and forgets why she is there but got all excited because the hospice house serves cocktails, she has heard!!! Gin at last!!!
In lucid moments, she said she didn’t want anything done, wants to go out like her two best friends, on her own terms, and doesn’t want to go to the teaching hospital or do anything else.
Hospice would be soooo helpful with increased services at the AL.
I called early this morning to cancel the enema procedure to check for perforations because I read that that procedure can CAUSE perforations. The surgeon was fine with that.
I would prefer hospice and see no point to appointments to discuss procedures that are not safe for her and which will yield results we cannot treat. She cannot tolerate chemo or surgery and conversation with NP today convinced me radiation should be avoided too.
So…my brother who lives hours away and comes to visit every 3 months, started yelling at me about how we needed to rely on doctors and not make decisions ourselves. He just doesn’t understand at all. So that is a tough thing to deal with. I will go to teaching hospital if I can get my mother there, but I also understand they will probably only make it worse by suggesting procedures we don’t want. My other brother is fine. If it were only me, we would not go!
Nurse at AL and I just went over meds and so many errors in transfer from hospital to AL. Usually I go over them with doc but didn’t have a chance. Everything that can go wrong will go wrong!
Glad to have her back at AL and doing a slumber party tonight
I’m so glad that you were able to get hospice involved. It’s a wonderful service and support and IMO, the earlier you can get them in place, the better. I’m so very sorry your brother was so belligerent. You did the right thing!
I think you are doing the right thing. It’s not easy, though. The siblings who are less involved often don’t understand or know all the details- much less the frank conversations, emotions, frailties, etc.- things that have gone on between you and your mom. You are being considerate of her feelings, even if that means a tough choice of no heroic treatments.
@compmom – So sorry that your brother is behaving that way. You certainly do not need grief from him in addition to everything else you are managing.
One of many challenging aspects of late in life medical treatment is the tunnel vision of the specialist. My mother has a slew of specialists, but no one is coordinating her overall care. When I hear of orders from one doc, I end up having to call another Dr to learn how one course of treatment will affect something else.
@compmom my brother (who lives in AK) was a bit like your brother’s reaction when something would go ‘wrong’ with mom - in many ways it was in part because he felt so helpless about being able to contribute meaningfully in the situation.
An example - on the last trip mom was able to take with a group w/o someone assisting her was to Italy. It turns out she had some of the neurological issues coming about which caused her to fall - just started when she was in Italy that we know of. When she got back home in WI she started falling a few times as well, like stumbling on uneven sidewalk. The Italy trip was arranged with a group (including some of my friends) from where I live (AL) and mom lives in WI. So she was at my home before and after the Italy trip. She had some bad bruises on her forearms from her falls in Italy (I think the uneven cobblestone brick that she didn’t pay enough attention to, and also neurological changes which went hand in hand with her later dementia - she masked early signs pretty well). I called my siblings to let them know about mom’s bruises from her falls. My brother’s immediate reaction was to yell at me. I don’t have a crystal ball. I had no way of knowing mom would decline on her trip. I am a RN. I would not have arranged for her to go on the trip if I thought personal safety was an issue.
It turns out she went on a group trip to her growing up home country, Switzerland, with my nephew managing things with her. My nuclear family made a trip to Disney World when the girls were 7 and 9 (over school fall break, it was the first year we had this fall break in Oct), and mom was able to fly down to Orlando, and we picked her up at the airport, took care of her our entire vacation, and got her back at the airport before we headed home. It was good for her, it was good for her grandchildren to spend some time with her, and it was family time.
Challenging and stressful times. Just not needing to take it personally.
@compmom, so sorry your less involved sib is giving grief I stead of appreciation. It is frustrating but you know you are doing your best for your loved one, even if you are getting grit instead of support.
Take some deep breaths and know that we support you and you ARE doing your best in this challenging times
Siblings are interesting. If all the work, planning, and decisions are yours, then just find a way to ignore them. My in town sibling has spent this entire year telling my far away siblings that our mother should be in a home. I am pretty sure it’s because sibling feels guilty for not helping more. Whatever. Sibling is no help to me, instead manages to complicate things for me, so I really don’t care what sibling thinks, though I wouldn’t mind them shutting up and stop stirring things up.
Dear lord my mom fell again today. Thankfully this was a supervised fall, she was fine, so no 911 call but I’m super concerned about the lack of stability. PT is going back to try to get her to learn how to use a walker. With the ALZ though, I don’t know that she’ll be able to learn, or remember to use the walker. Anyone have any experience with teaching an elderly person with dementia how to use a walker???
@momofsenior1 My dad does not have dementia (that we know of) but has a traumatic brain injury that wiped out his short term memory. So he does not remember instructions. He uses a walker but incorrectly. He holds it out in front of him like you would a broker cart, instead of walking “inside the box” as the PT taught.
It is usually right in front of him, but at meals and so forth he has to be cued to remember to use it. A waitress will usually have to bring it over to him or else he would just try to get up and walk on his own. In fact he does do that sometimes and then grabs furniture, looking like he is on a boat that is thrashing about, instead of thinking to use the walker.
I think the challenge will be getting her to remember the walker at all.
Errrr. . .that should be “grocery cart” not “broker” cart!! It is very frustrating that dad does not remember or cannot figure out the proper way to use the walker. He also starts to get up and looks alarmed or even says “Whoa, I’m losing my balance” with the walker smack in front of him. There is just a HUGE disconnect in his brain
