Why Elderly Patient Need Advocates

Lisa K

Warning I am going on a long rant about care for the elderly. My dad has been in the hospital four times, once for a planned procedure and the other three due to an emergency.

First trip to the ER was Valentine’s Day 2015, we discovered my dad has AFIB, at the time he was scared it was a stroke (something he really is afraid of) and he did not have his hearing amplifier. So, I ended up answering the doctor’s questions because my dad could not understand him (he had an accent and talked fast).  Since 2015 I have been going to all of dad’s Cardio appointments but not his Annual Physicals.

Second trip was in July 2016, my dad had been feeling really bad, unfortunately I was working and did not just how bad he had gotten (we do not live together). In February, my dad’s Cardiologist suggested maybe he should have an angiogram Primary doctor in March. In March during his annual physical all his Primary said was that there was something off in my dad’s urine test and prescribed some pill for it but did not address how bad my dad was feeling.  

Finally in July my dad decided to have the angiogram and did a pre-procedure blood test. The Cardiologist’s office called my dad and told him to get to the ER immediately. Due to the fact that it was 10 am the ER was packed and we sat their until about 1 pm before they even started the preliminary tests, turns out my dad had severe anemia, something I feel his Primary could have found if he did a little more investigation or at least did more extensive blood tests (apparently the blood tests did not include checking iron levels).  

My dad ended up getting two bags of blood, two large bags of iron and several tests none of which could tell anyone the cause of his anemia. This is where having a person who knows your history helps, years before my dad had a bad reaction to Statins, knowing this I started to research all of his medication and discovered that Xarelto can block the red blood cells from regenerate which they do every 120 days. This was proven to be the case when his Cardiologist took him off of it and his iron levels remained high, now every time at least his Cardiologist tests his iron level, still not sure about his Primary.

Third trip to the hospital, this one was planned, it was his angiogram which he did well and showed that everything was good. But leading up to the procedure that was a little drama with his Primary’s office, my dad thought he might have a Urine infection and was advised not to get the angiogram, it turned out to be nothing and the procedure was done on time.

Fourth Trip, on Sunday July 3rd, 2022, my dad called me and said he was having a problem, turns out that his was fine earlier in the morning but now he could not move, I called 911, they took him to the ER and called in a possible stroke even though the EMT I talked to did not think that was the cause it was more of a precaution. My dad did not have his hearing amplifier and his eyes have worsened, so he apparently kept telling the ER staff to talk to me. I ended up filling out all of this paperwork then I was able to sit with him and get updates from the doctors. It turns out he had pneumonia. During his 5-day stay at the hospital, I filled out all of the paperwork and did the research for the Care Facilities that dad went to so he could get stronger. I also stayed with him as long as I could and ended up answering most of the questions. Again, once at the Care Facility, I filled out all of the paperwork, answered and stayed with him from about 10 am to after his dinner.

Now I know that staffing is an issue and that with COVID resources are strained but there seems to be a lack of empathy for older patients by some, there has definitely been some truly great Doctors, RNs and CNAs at both places but there have also been some who seem to be there for a paycheck only. This has been especially true at the Care Facility, some of the CNAs barely do the minimum (in fact in some cases I have done some of the things for my dad like empty out his urinal when it gets too full). One of the common complaints from a few of the patients is there being no schedule with anything especially Physical Therapy and the response time if any when the Call Button has been pushed. A few of the patients my dad included no longer wait until someone shows when they need to use the bathroom, they get up and go, in fact my dad’s first night there the Night CNA just turned on the light and then left the room even though my dad is there to build up his strength and is a Fall Risk.

Again, there are some CNAs that even when someone is not in the care, will always help, two of them have been Elaine and Martha they have been incredible with my dad and others.

It is not just CNAs who seem to forget how scared some of the patients can get, between being in a strange place but also the reason they ended up there, it is also the Administration. My dad has been there also most 2 weeks and he has only seen the doctor once and it wasn’t until his 4th day that he finally had a really good PT session but again there is no schedule, the patients don’t always know if they are going to one or two sessions each day.

Also, a lack of communication, last Tuesday my dad was told that they were going to keep him there and re-evaluate his case the following Tuesday (yesterday 7/19), by 3:30 we had not heard anything, so I went and asked what was going on. I was told that the meeting got delayed until today (Wednesday 7/20) which would have meant if he was given the OK to leave it would be at least Friday. I said my dad wanted to go home no later than Thursday (7/21) at which point the Discharge Manager said let her call the Insurance Case Manager to see what could be done. It was agreed that my dad can be discharged tomorrow (7/21) but what if I had not asked, what would have happened and what about those who do not have someone to ask or advocate for them?

VermontCathy

There is a long term demographic issue worldwide, with the average age increasing and the percentage of the population that is over 65 increasing rapidly. This means there are not enough younger adults to provide care.

Your father is lucky you were there to help. Many older people either have no children, or their children are too far away to assist.

Lisa K

@VermontCathy thank you, I am very gratefully that I was able to retire so that I could be there for him this time, in the past I could only visit him before or after work which was hard on both of us.

I saw a lot of what you said about there either not being family nearby or any family at all. My dad's first roommate, his wife had challenges going to see him and was only to see him occasionally and my dad's second roommate has the kids all over the state and one in Canada plus he is a widower. As for others, the weekends where the only time there was a lot of visitors.

vickeym

I have been seeing the same types of issues in many areas, not just medical. An elderly female customer hired some people to shovel snow for her (at an outrageous hourly charge) The folks sent their two teenage boys over who shoveled about two feet into the area she needed done charged her over a hundred dollars, left and did not come back.

I have been in physical therapy for a torn meniscus. A therapy company from the next largest town comes out to the clinic in my village once a week. Of the 8 appointments I was scheduled for, and they gave me a printout of them back in May. The therapist has not been available for 3 of the appointments. My first appointment they double booked. I knew the other patient so we were chatting in the waiting room. When the therapist comes out she tells her she was on stand by and they had not had any cancelations. Never called her.

Since then on the first 2 appointments they did not show up for they had sent the therapist to a different location for the day. The first one, I was in the waiting room already. My appointment was scheduled for 4:00, I had to leave work early plus the fuel to get there. They called at 3:58 to tell me they had to cancel the appointment. Then next time they at least called early, 11:30.

The last one, which I already knew they had scheduled the therapist for 3 weeks in a different location while knowing she was fully booked all 3 days in my location. I just did not know if it would start that week or the next. We called multiple times that day leaving messages that we needed to confirm if there would be a therapist available. They finally answered at 3:00 and told my husband I did not have an appointment I was on standby. I had the schedule of my appointments for over a month in advance. I now know that "standby" means we changed things and don't want to admit to it.

Lisa K

@vickeym that is so wrong on many levels and the complete lack of customer service makes me wonder how they stay in business. As for the elderly customer, you can only hope karma teaches them a lesson and what kind of parents would allow that type of thing!

To continue my rant, when I got to the care center there was a patient who was standing in the middle of the hallway calling for the nurse who was no where to be found. This patient is blind and cannot stand for very long, so I helped her back to her wheelchair. I finally saw the day nurse about an hour later. I am sure the center would be upset that I helped her but I could not see leaving her while trying to find someone to help her.

Torey

Its not just elderly patients who need advocates. Even fully capable adults may have difficulty understanding or making decisions when in pain or seriously ill.

Its not just in the US. We have had closures of several emergency wards around the province in recent weeks. In one case an ambulance arrived at a closed ER cause the powers up the chain of command had neglected to tell anyone of the closure. This was a delay of an hour and a half to get to the next closest hospital. On Vancouver Island there are two hospitals within a half hour of each other on the northern island. A few days ago both ERs were closed and the next closest emergency ward is two and a half hours away.

I have a friend whose husband has been in and out of hospital and she spends her days with him to ensure he is getting fed properly (he must be sitting upright but they give him his tray in bed) and assisted to the toilet when needed (I think they would prefer that all patients with mobility issues were in diapers).

The president of the Canadian Medical Association has been quoted as saying "What's clearly coming is the collapse of the current health-care system." Several of the provincial leaders are saying similar things. All asking the federal government for more money. However, I am convinced that no matter how much money is thrown at it, our current system is broken beyond repair and needs a complete revamp.

LaurieLovesLearning

@torey I fully agree.

@vickeym I saw a video the other day showing physiotherapy exercises for torn meniscus. I'm not so sure those exercises would be good for the pelvic region, however, and could potentially cause or aggravate prolapse. Some looked suspiciously close to a planking position, which is very bad. I understand the exercises in theory, nut sometimes physio misses the potential negative effects to other systems.

I will see if I can find it for you anyway. The first exercise(s) seemed okay and you may be comfortable with the rest. This may help if you are on standby anyway.

https://youtu.be/W0515pVkvmI

vickeym

@LaurieLovesLearning Thank you for sharing these. My therapist had me doing several different exercises which I will continue on my own.

Some of the ones this guy shows I may try. Others like using the ball, there is absolutely no way my knee will allow me to do at this stage. If I put that much pressure on my knee, I won't be walking for several days to a week after.

Had to get down on my knees today to clean a drain at work. Hurt like the devil just being on my knees but getting back up, Oh My! Took me almost 10 minutes to get back on my feet.

I agree the health care system is seriously broken. It is almost like they want the elderly and anyone who they feel could be a burden to just do without and end up dying off.

Lisa K

@torey I agree and find it totally unacceptable, no one should be treated with such indifference and uncaring.

shllnzl

As a senior citizen, I am trying to avoid the medical system except for routine screening. The government program for seniors, Medicare, pays for minimal care. Hearing, sight and dental issues must be self funded.

Hospital administrators, the Covid lockdown and mandated vaccines have reduced medical staff everywhere. That's one more reason to keep myself as fit as possible.

Blessed are the people who don't forget the humanity of all of our citizens, included the disabled and elderly.

water2world

@Lisa K I have experienced the same thing with my mom! She lives in a different state (11 hours away), but if there is a problem she calls me, which is fine- I tell her to push her button for help, but she would rather not "bother" the workers,but will end up, having to push her button. The last time this happened, I could tell she was in bad shape, having trouble breathing etc and I told her to push her button and she did. I waited with her on the phone and when no body answered, I started calling the main desk---somebody is supposed to be there---no answer- left a message--medical emergency etc and called my mom back, still no one had come. An aid came in to get her trash and my mom told her that I was on the phone and was calling an ambulance---that got a nurse/aid there immediately!. After it was over, I told them that from now on, if mom's button was not answered in a timely manner, I would make one phone call to the main desk and if no answer, I was not leaving a message, I would be calling an ambulance! That problem seems to have been solved--hated to threaten an 911 call, but her button is answered promptly now! ( I would move her out in a second, but she wont move! )

Lisa K

@water2world how scary for you mom! I am very fortunate that I live near my dad, it proved to be important when my dad was discharged from the Care Center only to end up in the hospital the next day, this time due to something else (not the pneumonia). This time they think it may be his heart, he does have AFIB but his heartrate is low which is typical for him.

It was suggested by the Paramedics and something we have been talking about, it may be time to get him in-home care, either full or part time. If it is part-time then I will fill in the other days/hours someone is not there.

Monek Marie

I noticed a difference in the way Doctors and nurses treated my mom (locally) after she turned 90. Her new doctor actually made the comment, "Well Your 90 now." He was replaced immediately.

Its important to have family close by for any family member with any issue. There is a lot of good care out there and not to great care. A family member just keeps it real.

My heart goes out to all those who care for a family member. Its difficult and rewarding on so many levels

Lisa K

@Monek Marie I saw that happen with a friend's mom and they completely misdiagnosed her cancer.

As for my dad, his cardiologist is great and his GP was more interested in pushing medication then find out the root-causes which is why I changed his GP. There are a lot of things I feel his GP should have found and now it is too late his body is not able to heal itself at this time (if ever).

dipat2005

I have advocated for both my mother and my aunt and I have to say since I have a medical background it was worthwhile. I asked my mother's doctor if I could tape the office visit since my mother needed to hear the instructions more than once. The doctor said she had no problem and thought it was a great idea. I asked clarifying questions when ever we went to see my mom's doctor. She was very helpful.

I wholly believe in being a parent's advocate. I advocate for myself in my doctor's office. My doctor hears me say "NO" more often than not and he hears me say no "Pills". I would rather do something naturally.

Linda Bittle

I am so happy that I decided to move back to be near my mom and sister in June of 2020. Mom lives with my sister, about 30 minutes away. Since I don't drive any longer, Susan has to come get me when I need to stay with Mom. But we got me set up to be able to get paid for 3 hours of cooking, basic care, housework, etc. So that helps offset the fact that she doesn't have internet, so I cannot do my gig work while I'm there. Honestly, 33.00 a day is more than I usually make doing surveys and Amazon MTurk jobs.

My sister is a saint, because I could not be her everyday provider. She's so negative about everything - and always has been. But I can do the odd weekend so my sister can have a break. She's going camping tomorrow with her son and daughter, their spouses, and 9 of her 10 grandchildren. The oldest has to work.

Sis is an LPN, so she does a lot of advocating for Mom. Problem is Mom would rather have the most invasive, most modern, most expensive care, regardless of the cost or dangers. Thankfully, she is not a fan of the C. shot, so that hasn't been an issue. But, even after Susan advocates for better plans, and the doctors agree, Mom still wants the test, the treatment or the pill. And she's an adult, so she does get to choose.

Say a prayer for me this weekend. I'm gonna need a drink by the time my sister returns on Sunday.

Lisa K

@dipat2005 you are lucky to have a medical background, I feel that if I did, I may have caught some of my dad's issues before they become so serious.

@Linda Bittle Good luck this weekend and hats off to your sister, I know I could not live with my dad permanently and I know the feeling is mutual.

I am very grateful for his Cardiologist during this latest hospital stay he has been very patient with my dad and was instrumental in helping convince my dad that a pacemaker might make things better. My dad had the surgery today and right afterwards looked so much better.

Also grateful for the Hospital Doctor who did not like how extended his stomach so she did a bunch of tests and found things that his GP never found or even look for any issues, which is why I changed his GP at the beginning of July.

Lisa K

OK another mini rant - so when did hospitals start discharging (dumping) patients at Care Centers? Supposedly my dad needs some rehabilitation for gain back some strength, but they are still dealing with the fact his kidneys were a problem and he had to have a catheter put in, granted his kidneys are improving and the pacemaker seems to be working (it is keeping his heart rate up at 60), but still they are going to be moving him today to a Care center (not the same one as before!) with the catheter still in, how is he supposed to get rehabilitation with the catheter in?

shllnzl

@Lisa K Rant away -- it is my opinion that seniors are disregarded in every way, including pushing them aside to a different facility when possible.

My mother had doctors ignoring big problems and trying to schedule weird tests. Elderly friends have told me troubling stories too.

When I was working, my doctors pushed me for all kinds of visits and tests. Now that I am on Medicare, my maintenance visits, etc., are vastly reduced. I also moved to a small town, so I am giving doctors the benefit of the doubt, concluding that the doctors here aren't as money grubbing as those in the big city.

However, my last three annual physicals have me annoyed: cognitive tests at all visits (seniors probably need this once in a while, but every time?) but not once did the doctor look at the inside of my mouth or throat. I don't remember him checking my carotid arteries either.

I think I will change my doctor before next year's visit. In the meantime, I will try to avoid doctors whenever possible.

Lisa K

@shllnzl after last night I have to agree! The doctor that will be my dad's doctor while in the care center I found to be rude and dismissive. He also appears to be the type of doctor that likes to tell other doctors what they should do and prescribe, granted he wants me to tell my dad's Cardiologist to prescribe a medication for him and I am guessing he is doing that without taking into consideration that in the past my dad has had some very bad reactions to medications. Needless to say I am going to research it first.

dipat2005

@Lisa K good for you for changing his GP. It is important to have a great GP. Also the hospital wanted me to go to a rehab center when I fractured my hip 4 years ago and I said, "NO". No way I had a PT person who came to the house I did the exercises and although I still walk with a cane (for balance) I did everything I could to stay home.

I asked the ladies in my church to come and help prepare dinner for me. I had everything I needed at home. The reason I didn't want meals brought in is because I was eating differently (more natural) and already had the food in the refrigerator. The ladies were nice and helped me for 5 days. Then I could stand long enough or sit (which is usually what I do) long enough to cut up vegetables and fruits.

Lisa K

@dipat2005 I think if I had to do it over again, I would probably have had dad go home the first time and have someone come in for PT. Unfortunately, this time he is still in need of medical attention due to the pacemaker and catheter. Hopefully, once he gets out it will be the last time for a while that dad will have to go to the hospital and care center!

Torey

@dipat2005 That brings up another issue. Food for those in care.

From experiences in my province, I have found the food in institutions in BC to be atrocious. There is no consideration for what people may have been eating at home. Changing the diet of an elderly person (or anyone for that matter) can bring on digestive upset and poor assimilation of nutrients. In the current system it is often difficult or impossible to arrange for special meals even for those who have distinct dietary requirements (allergies, needed nutrients, etc.) But the food itself is often unrecognizable as to what it actually is. My friend whose husband has been in and out of hospital said that when he was on a minced diet, she tried the meat and was unable to tell what kind of meat it was at any of his meals. Didn't know if it was chicken, beef or pork. That is pretty bad. No fresh veg of any kind except salad that was just a tiny bit of iceberg lettuce with a couple of strands of grated carrot. I have seen what is being served up at some of our extended care facilities. Instant oatmeal for breakfast. White bread sandwiches with just the barest amount of filling. Watery soups.

This is nothing new. More than 40 years ago when I was in the maternity ward, one of the meals they brought to me was noodles with what they were calling a stir-fry; cabbage (poorly cooked) and large chunks of nearly raw onions (no other veg). For a nursing mother, if you can imagine. And no milk. I had to request milk and then sometimes didn't get it.

Don't know how anyone can be expected to improve their health without proper nutrition.

Linda Bittle

Well, I survived another weekend with Mom. She is one of the most negative people I have ever known. I told her about my daily gratitude journaling, and suggested that she give that a try. She said she would, and even showed me the notebook she would use. I hope she does give it a try.

She spent a great deal of time telling me who is to get what when she dies. I was OK with that, and she seemed to be happy to drag me around and show me little things. But then she got into a darker mood and tells me she is just ready to give up because her arthritis hurts so bad. Her dad had it really bad, too.

Her doctors refuse to prescribe heavy meds for her, thankfully. But she won't take the Advil they want her to take on a regular basis - she waits until it hurts really bad and then it doesn't help.

Any herbs you have had luck with for rheumatoid arthritis? I kind of want to offer something helpful that won't upset her stomach, but she's not real receptive to herbs.

dipat2005

@Linda Bittle try using acupressure points. It works for me! I think your idea about a gratitude journal would really help your mom.

@torey I had forgotten about the food my mother was eating. It turned out that she had been eating food that was way out of date! She was having intestinal problems and the doctor couldn't figure out what was wrong. This is a common problem among older people.

Also if you have a parent who is having issues make sure to help with opening cans and bottles of water. My brother purchased my mom bottles of water and put them on the table. Guess what! she couldn't open them. My brother lived next door and my mom's philosophy was she wouldn't bother him because he was always so busy!

By the time my brother got her to the hospital she was severely dehydrated-just because she was unable to open a bottle of water and wouldn't ask for help! This is also a common problem among the elderly. My mom was almost 92.

Torey

@Linda Bittle Has she tried anything topical for her arthritis? I find Balm of Gilead aka Cottonwood bud salve quite helpful, especially when mixed with a cayenne oil.

Does she take turmeric?

Boswellia is another that has been studied with good results. There are salves/creams that contain boswellia, too, as well as supplement form. Cat's claw and Devil's claw are two other suggestions.

Thundergod vine (Tripterygium wilfordii) is one of the newer herbs for rheumatoid arthritis. At least one study has shown it to be as or more effective than methotrexate and even better when used in combination; TGV & Methotrexate.

Lisa K

My dad had very bad nights and since the doctor only shows up once a week (the first was Sunday) I had to try to figure out what was wrong, I asked the nurses for a urine test which they took and did not send it to the Lab until the next day, asked a nurse if someone could listen to his lungs, so the nurse did it and said they sounded clear and they nurse the day before that took his urine said that maybe the issue is age!

I then asked him if that was the case why did he bring up his breakfast, was suddenly hallucinating and he was disoriented? He said "oh true". Also, he kept telling the nurse and me that my dad thought he had died and wish he had, that is how bad he felt. Anyway, I ended up staying with him Wednesday night and he seemed to be getting better so I went home last night to get some sleep.

If the doctor comes to see him this weekend and dismisses him again, I am asking for a new doctor.

Torey

Asking for a new doctor is all well and good but what if there is no other doctor?

We are suffering from a shortage of doctors here in BC. It is estimated that 20% of the population doesn't have a family doc. One couple put an ad in a newspaper this past week, trying to find a doc that could fill the husband's very necessary prescriptions as their doc had just retired without a replacement.

One of only 3 surgeons in our nearest hospital just quit over mismanagement of the surgical ward by the health authority.

Hospitals here continue to experience intermittent closures of emergency rooms. Maternity wards are also experiencing temporary closures due to lack of staff.

And its not just mismanagement of the hospitals and lack of docs and nurses. Our provincial dispatching system, E-Comm, is also experiencing staffing shortages. People are being put on hold when calling 911, sometimes for over an hour. When you do get through, it could be hours before an ambulance is able to be dispatched. In this jurisdiction, when paramedics arrive at a hospital with a patient, they aren't allowed to leave the patient unless handing them off to a doctor. If there is a shortage of docs and nurses, that means that the paramedics and ambulance are held up at the hospital, so they can't leave to answer more calls. So its a domino effect.

Its just a horrible mess and I can't see it improving any time in the near future.

vickeym

Reading all of this not only makes me sad and angry but also reminds me how important it is for us to become our own doctors whenever possible. Major things we still have to rely on licensed physicians for but time to really get serious about learning to take care of ourselves.

shllnzl

@Linda Bittle I have mentioned in other posts that I have had quite a bit of pain.

I know for sure that I have severely arthritic hand, arthritic knees, toes and maybe hips.

I have identified my lower back/hip pain on one side to muscles that are badly out of balance in my right hip. Exercise is helping that.

Turmeric and significant exercise is helping my arthritis; the problem is that you need to exercise for awhile to loosen everything up. My lower body probably complained that it did not want to move for at least three months of exercise on the treadmill. I just moved slowly and made sure I wasn't experiencing symptoms of heart attack or stroke. (Gym coaches check on you a lot when you're a senior!)

I exercise at least three hours a week at the gym and try to move a lot otherwise. These days it hurts more to not exercise than it does to exercise. I am now an advocate for other seniors who show up at my gym out of shape. Many people stop moving at the first hint of pain and ultimately end up in worse shape and more pain later.

Your mom would get less pain if she forced herself to walk around the block more often. Her mood would improve from the fresh air, sunlight and exercise.

Good luck.

Lisa K

@torey your situation is truly terrifying! I have to admit that my dad has been lucky in that a room was found for him by the evening both times he was in the ER and this last doctor was great and found out a whole lot more than the doctor found when he was in there the first time. But again, I think they discharged him too soon and he ended up getting a serious build up of ammonia and even though we have only seen the doctor once, the nurses have been able to handle the issue and get in contact with the doctor.

I have learned more about the medical profession in the last month and hopefully I can spot issues with my dad before they get critical so we do not end up in the ER.

@vickeym I agree with you that the healthier we can be the better so we don't end up needing help and none is around.