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Dr. Buster Diagnoses
My cell phone rang at 5:15 a.m. A call at that time bodes ill. And ill it was, as was expected. “Mrs Rodin’s mother has passed,” was the message from the nurse at the memory care facility. She had gone into hospice care just five days ago.
The decision to enroll her in hospice was complicated: Two days before Christmas, Mrs Rodin’s mother had been found on the floor of her room three times in the night. The nurses were concerned that she might be dehydrated; she had a low fever. They wanted her to be checked out at the Emergency Room. They gave us a choice of picking her up and taking her ourselves, or having her transported by ambulance. Knowing that she would be attended to more quickly if she arrived by ambulance, I directed that they call one.
The Emergency Room experience was horrid. It wasn’t the staff’s fault in particular. Priorities have to be made. But Mrs Rodin’s mother was very cold, confused, and highly sensitive to pressure and pain. It always takes longer to check things out when there is nothing obviously wrong. Lab work and x-rays were done, taken. Results were eventually read. A small infection, but no bone breakage, dehydration, or bloodwork abnormalities. Six hours of agony with nothing to show for it that could not have been dealt with at the memory care residence.
And so it was that Mrs Rodin and I were determined to find a way to keep her mother from another Emergency Room experience absent a severe emergency. I did not fault the memory care staff. They have their procedures. If they needed a waiver of liability, all well and good. The Nurse Practitioner had a scheduled visit the following Tuesday. I made arrangements to meet with her to discuss the care plan going forward.
When Mrs Rodin and I arrived at the room, her mother was in the bathroom. I left in search of the Nurse Practitioner for the scheduled meeting. When I came back to the room, Mrs Rodin was trying to open the barn door slider to the bathroom. Her mother had fallen (slumped?) in the bathroom while I was out. The door was pushed out at the bottom in a way that could not be opened; Mrs Rodin’s mother was lying with her back to the door. We had to use the door to push her mother completely back into the bathroom in order to slide it open.
The Nurse Practitioner arrived while we were doing this, and other staff was called. The Nurse Practitioner verified that there was no injury making it advisable to leave her on the floor. With assistance of staff, Mrs. Rodin’s mother was placed in her bed. The Nurse Practitioner and I then had our conversation.
I related what had happened at the Emergency Room and my desire that Mrs Rodin’s mother not go to the Emergency Room if at all possible. The Nurse Practitioner was sympathetic and understood. She suggested that due to Mrs Rodin’s mother’s deteriorating condition that she be enrolled in hospice care. She explained the basics of hospice care — compassionate care not intended to cure but to maximize comfort. She said that based on her observations, she thought Mrs Rodin’s mother qualified for hospice care and that the hospice organization, which would do its own assessment, would likely agree.
I made an appointment with the hospice organization that the Nurse Practitioner recommended. I looked up online what I could find about hospice for dementia patients. I discovered it was not straightforward. There were a series of observations that needed to be made and evaluated in combination. Yes, there were some extreme conditions that were clear, but there were also some combinations that were less clear about whether a dementia patient would likely die within the next six months. And there were provisions for re-certifying impending death in the event the patient did not, in fact, die within the six-month window after entering hospice care.
I examined the criteria again against my own observations of Mrs Rodin’s mother’s condition. Did she really have that? Was her cognitive decline that advanced? What does that term really mean? I remained firmly convinced that Mrs Rodin’s mother should not go through any more Emergency Room experiences that she had just experienced; the cost/benefit was decidedly on the cost side absent treating an extremely painful injury. Mrs Rodin’s mother was 92 years old, she had been diagnosed with a terminal illness of unknown duration. If she had less than six months to live, why should she undergo the torture of cold and pain? Few people seem to have the kind of empathy that lets them really see into the discomfort of the extremely aged and infirm. I can’t imagine feeling as cold while indoors and at least partially clothed and thinly blanketed as I would outdoors naked in an icy, damp, chill wind. But I could see that feeling in Mrs Rodin’s mother at the Emergency Room, with all too brief respites when a freshly autoclaved blanket was delivered and before it lost its warmth.
All my uncertainty would have been immediately eliminated if I had been attuned to “Dr Buster’s diagnosis.” Buster is our 10-year-old Yorkshire terrier. He loves everybody and can’t get enough attention from anyone. When she lived in our home, Mrs Rodin’s mother loved to hold Buster and he loved to be held by her. And so it was that on the Monday evening before Christmas, we thought it would be nice to take Buster along as we went to collect Mrs Rodin’s mother and tour a neighborhood known for its elaborate Christmas light display. As soon as we got her settled in the back seat of the car, as expected, Buster sprung to her lap, got in her face, and licked her. But then, surprisingly, he leapt off and would not have anything to do with her the rest of the trip. Mrs Rodin didn’t say anything, but the thought crept into her head that Buster knew something we didn’t. And, as it turns out, he did.
October 22, 1930 – January 3, 2023.
Published in General
In the comments I am not soliciting condolences. I know the Ricochet community and I know that those feelings are there. Rather my preference is for the comments be used to discuss the challenges of dealing with loved ones with dementia, end of life decisions, and the remarkable capabilities of our pets to intuit what is going on with us.
Thank you.
Rodin, I am so very sorry for Mrs. Rodin’s passing, and for the extremely difficult time you had in trying to take care of her in a compassionate and loving way. When these times arrive, especially when dementia and hospice factor in, the trauma on the family is almost worse than on the patient. As a hospice volunteer, I can only say that from all you have said, the right decisions were made along the way. It might also be helpful to keep in mind that many of the “rules” of hospice are determined by Medicare and Medicaid. When it comes to the six month period and the re-examination if they have lived, that is all determined by the government agency.
With all that said, from your past stories of your mother-in-law and how you and your wife cared for her, I know that she knew even in her last days that she was deeply loved. Peace.
Mrs. Rodin’s mother was blessed to have so many people actually caring for and about her. My MIL had dementia, osteoporosis and probably some other issues. Due to some really messed up, and manipulated, family dynamics, she was living alone in an apartment where the doorways were so narrow she could not get in to the bathroom with her walker to use the facilities. She had a parade of home health care nurses who were detached at best. Had she been in an assisted living/memory care facility, she would have been treated like a queen. She was a dignified woman who deserved better than the squalor in which she lived. Sometimes the issues are not with the system but with the family members who have agendas. We also have dear friends who are dealing with a host of health issues with one member of the couple, mostly involving what Medicare will and will not pay for. Family members are about an hour away, so they are mostly on their own.
You had uncertainty because you cared. What a great thing for Mrs. Rodin’s mom to be able to go for a ride and look at Christmas lights with a beloved companion in the seat next to her and her family conducting the tour.
I have had to make tough calls twice. It isn’t easy to deal with, to know what is best, to reduce suffering. Hospice sounds so terminal and such a decision is hard to make but necessary. One has to set aside the desire to hang on to a loved one and admit it is time to move to the final phase. We live longer but that creates other issues. I made all the legal documents to save loved ones the hard decision re “do not resuscitate,” but changed the documents after the Terri Schiavo case. Now, my loved ones must make the call, not the hospital.
Skilled nursing care is far more costly than assisted living. We have an insurance policy that pays for home care. Now I have heard that there aren’t enough health care providers to service that need now.
Yes, this is a major issue. I am a hard-eyed realist on economic matters so I understand that wages need to scale with hard skills. Taking care of elderly is a mix of skilled and “unskilled” labor. I use quotes around “unskilled” because nobody pays directly for empathy, and yet when you meet with nursing assistants who clearly care, they are a cut above. And essential if your loved one is to be kept clean and comfortable. Maneuvering the infirm is a skill, maneuvering them with minimal pain is a miracle.
This is a very difficult labor market right now and competition for jobs is not fierce. It is the opposite. Just getting enough bodies to share the load is a challenge.
Too bad. You’re getting condolences. I’m so sorry for your loss.
I treat a lot of horrible things. But I really, really dislike dementia. Absolutely awful stuff.
My sincere condolences.
I read the book: Being Mortal: Medicine and What Matters in the End, after my mother passed. I recommend it highly. She too had dementia and also breast cancer. Making decisions on behalf of someone with dementia is so hard. We elected not to go for the aggressive cancer treatment early on in her dementia-she was responding well to the ER inhibitors and ultimately we didn’t want to trade good years now for what was coming. But the decision haunted me, and when her cancer returned after 4 years, I blamed myself. About a year later, she died of breast cancer peacefully in her sleep.
I read the book and realized after a while that the decisions we made were the right ones. I think the aggressive treatments, including surgery, would have exacerbated her dementia. Her father and brother died of it, and it was the one thing she feared her whole life. I think she got the breast cancer by taking estrogen trying to ward off the dementia. In a way, it did as the breast cancer took her before she reached end stage dementia. She knew us until the end and the was spared the horrible end stages of dementia which she saw with her family.
One of my mother’s aides said something to me that I have passed on, and which is one of the lessons learned from the book: At some point with end of life care, there are no right or wrong decisions, just the best we can do for our loved ones and ourselves.
oh, Rodin, I am so sorry, both for the ordeals you all have gone through and that your mother-in-law has now passed away. I didn’t know her except through your mentions of her occasionally, but I’m sure I would have liked her enormously.
As to the rest, been there and done that: it all sucks.
I think there is no question but that stressful circumstances do. We noticed a marked change when we relocated from California to Tennessee at the end of 2020. On the one hand we upgraded our life with the move, but Mrs Rodin’s mother clearly notched up a bit on the dementia scale. She never really quite grasped that she was in Tennessee, and not Washington state where she grew up as a child. And that last trip to the Emergency Room I think took a lot out of her.
Condolences and prayers . . .
Rodin, I think all of the ricochet members reading your post would find it hard not to offer condolences.
Please let us offer them to you, and to Mrs Rodin.
As far as medical treatment comments, I never have understood what or why the obsession the hospitals in the USA have in their keeping people lined up in ER’s, or waiting for tests out in the radiology department hallways, in such horrendous cold. (Even on summer days.)
Hospitals pay hundreds of thousands of dollars for machinery and yet don’t have on hand any warm blankets for the patients. In this regard, patients were probably better off 100 years ago than today.
Your amazing Dr Buster knew and offered you yet another remarkable account of what our pets do for us.
While the medical world can take days or even weeks of evaluations to come up with the words “Sorry but your relative doesn’t have much time left,” your canine buddy understood quite well.
Well @rodin now you done it. I lost my godfather on 01 Jan and I thought I was doing OK, until now, so there you go. His name was Leo and he was 90 when he passed, he and his wife had been more of a father and mother to me then the two who provided the sperm and egg to make me. Leo still had his mind, and was living alone with daily at home visits and meal preparations, but movement was very restrictive because of his COPD and a constant need for oxygen. Both he and his wife, Dixie, had been heavy smoker (two pack a day – Pall Mall) until his retirement from Western Electric in 1982 at age 50, then they both quit cold turkey on his last day of work. But the damage was done and the last 10 years saw him more and more confined to the house. Dixie had passed away in Feb 2021. She died 24 hours after receiving her first COVID shot, no causal effect – just sayin. Leo woke up before mid-night on New Years Eve, with breathing problems and call an ambulance for himself, then called one of his daughters to let them know. He died just before noon on 01 Jan surrounded by his children, grand children and great grand children who lived in the local area. I miss them both.
Thank you, Carol. I was trying to honor his wishes but you are right. It is hard not to offer condolences in difficult times. There is only so much a few words can do in such times, but I send my condolences, too, to Rodin and “Mrs Rodin.”
I send my condolences to you, too.
So sorry to hear of your loss, Ronin. Thanks for sharing their story with us. Seems like so many are suffering losses. Peace.
My heart goes out to you. These older relatives seem to live on and on, almost like they might make it for another bit of time.
Realizing you lost both your godmother and godfather in just a bit under a year indicates this might be a very big blow for you.
It sounds like Mother Rodin was fortunate in her choice of daughter and son-in-law.
Animals just know things. It’s amazing and uncanny and humbling.
My Mother faced a similar situation. She had dementia and lost her ability to speak. Her health declined over the years. We were trying together her into Memory Care, but a slot never opened up. Eventually on Christmas Day in 2019 as they were getting ready to take my parents back to their house for a family get together she collapsed. She had a UTI that was never noticed and she couldn’t tell anyone about. It had gone septic. They tried to get her kidneys going, but she went I to organ failure and passed on the 29th (my oldest brother’s birthday). In a way we had lost her years before when she lost her ability to communicate easily. She was a high school teacher and the debate coach. One of her best qualities was her sharp mind. She loved to talk politics (she described herself as a Consiveral…conservative on social issues and liberal on other issues). Loosing that ability to talk about anything and everything had to be torture for her. I always thought her mind was still fine just the interface was faulty, but I have no idea.
My Mother In Law is now starting to show more severe signs of dementia. She has stage 4 brest cancer (in remission) and takes multiple cancer drugs for HR2+ cancers. She also has diabetes and has to take medicine for that as well. Now she has cognitive impairment and has to take drugs to slow that decline. The problem is, that her dementia makes it hard for her to remember to take her meds at rhe correct time. Last summer she went into ketoacidosis and had to go to the ER and spend a few days getting her blood sugar back in normal range. The day after Christmas she was talking to her sister and her sister noted that she was slurring her words. We saw her on the 27th to take her to a movie and also noted her speech and balance issues. We took her to the doctor Wednesday AM and they sent her to the ER for imaging to see if she had a stroke. Her blood sugar was also very high (over 400) and her A1C was over 10. After three days in the hospital her BSL was normal and the MRI showed no current stroke, but evidence of multiple prior strokes.
Now that she is home we are trying to get her to take her meds, but her husband is resisting us taking on a more direct role in her health. He thinks that the doctors are scamming them and the meds are making her sick. She isn’t taking her meds on schedule and isn’t testing her BSL. At our follow up the doctor tried to talk.to her husband but he would not listen and last night it blew up and he kicked us out of their house. He thinks we are trying to steal their house now.
Part 2
He and my wife got into a screaming match because he doesn’t want his wife taking all of her meds because she has some side effects. We are trying to get her stable first so her BSL is normal and then can figure out what meds are causing her GI issues (it’s likely the metformin when she eats too many carbs at a meal). My wife started yelling at him that he was going to kill her Mom if he meddles with her meds. I told him that if he doesn’t help, we will have to come over twice a day to ensure she is taking her meds and that she is eating better. If none of us take care of her the State will. My great-Aunt lived alone until she got a UTI and collapsed. She couldn’t get up and luckily my cousin dropped by to see her and got her to a hospital. The State would not let her go back home alone and placed her in a nursing home. She died two weeks later. The doctor at her check up was already saying that an assisted living facility is in my Mother In Law’s near future and when I mentioned this to them during this fight he responded that the truth was now revealed and we just wanted to take their hone from them.
Now my wife and my Father in Law are two of the most stubborn people you will ever meet and they both have declared that there will be no more communication between them. My Father in Law obliquely threatened my wife warning her that she should “watch her back” and she would “get what’s coming to her”, if she continues down this path. It’s a total mess. What’s worse is that my Mother In Law cannot remember when she has me.ory loss sonshe doesn’t remember that when she was in the hospital that she called her husband but thought she was talking to her Dad and wanted him to tell her Mom that she loved her. Her husband was super confused by this (he is hard of hearing and refuses to get hearing aids so likely just didn’t hear what she was saying). Now she is accusing us of making up her memory loss and thinking she is stupid. She has barred us from attending any more of her health appointments. That assumes she will actually remember to go to any of them. The doctor told her not to drive because of her strokes, and there is no guarantee she is taking her stroke meds, or doubling them up (even worse). At some point she is going to have another loodnsugar incident, or a stroke, or just due and we cannot help her without going to court at this point. Lime that would make anything better.
Tough one. What is physically best and what is mentally best are in conflict. I hope things improve for you.
Well, the mental will be taken care of if the physical deteriorates much more.
I was shocked with how simple things like UTI worsened my dad’s dementia. At least we didn’t have other issues like blood sugar and the help of a skilled nursing care facility. Finances weren’t a problem. We knew he wouldn’t outlive the assets available from the sale of his house.
The level of care breaks up families. One other guy needed skilled care but his wife only needed assisted living so they were in two different facilities. She came over every day to be with him all day.
David, I’m so very sorry to hear about your family’s difficulties. I suspect that your FIL may also be having some issues with dementia. I am always amazed to hear of another story of an older person not knowing that he or she has a UTI, which progresses and then leads to mortality. This situation also happened with my mother. My uncle had hallucinations as a result of a UTI, which is not unusual. So very sad.
One of the first things that a caregiver has to recognize about dementia-even just simple aging- is that your loved one no longer can monitor their own health. You quickly realize that your loved one cannot see the doctor alone because they will not accurately report what is going on. I remember my mother happily announcing after she was diagnosed with breast cancer that her doctor gave her clean bill of health!