Not bringing my elderly parents to all their medical appointments... Am I being neglectful?

Dealing with the same thing. Mom doesn’t want to go to even the simplest appts. Minor skin rash to see the dermatologist and she doesn’t want to go. I don’t know where the line is. It could be something serious or could turn into more of a problem if left untreated but she resists going. How can I force her to go? I need answers too

Since ur saying "Mum" are u from the UK. Most of us are from the US but we have a few from the UK. Our healthcare is very different than urs if from the UK.

Me personally, cut back or out Dr. appts. Moms PCP was having her come back every 2 months. I asked her why, she had no idea. So I went with her. When he walked in and asked her why she was there, that was the last time she went unless sick or needed a prescription refilled. The hospital saw something on an Xray so took Mom to a Specialist. He didn't feel it was anything so we were just watching. Went every six months for a couple of years. When Mom entered an AL and her Dementia was getting worse I cut it to a year and stopped when she entered LTC. Same with a couple of others. When she got stable, allowed her PCP to take over. If problems popped up, I would have gone back to the specialist.

If ur parents don't want to go, then don't force the subject. Dementia people don't do well after a hr or so. I would not put her thru anymore scans. If she has cancer, are you really going to put her thru chemo. My Mom had bladder cancer. She was scoped every year. After five years it didn't come back. She was in her late 80s when I stopped the scope.

gkcgkc, I know what you mean. Now that I am in my 70's, my primary doctor wanted to see me and sig-other every 3 months. Really? Every 3 months? Is something going to change THAT quickly? We would just change the appointments to the following month.

I am at a point that I no longer care if something serious is found. I am not going to put myself through a series of meds that cause major side effect [had that journey when I had cancer].... to me it is all about the quality of life, not quantity.

My own Mom was the opposite. She wanted as many doctor appointments that she could shove into a calendar. She was still getting mammograms in her 90's. Seriously, if cancer was found she wouldn't survive surgery at that age, and chemo would be extremely difficult. But she wanted that reinsurance.

JoAnn, my Mom also had bladder cancer, and every year she went to see her urologist. The doctor told me that Mom wouldn't die from this cancer, it will be something else. Sure enough he was right. Mom would continue to make appointments. She did the same thing with her hematologist into her late 90's, guess she liked hearing from him "see you next year". Eventually he said she didn't need to come back, but she insisted on making an appointment for the following year.

Good evening,

I am currently reading a book someone suggested on this site: Rethinking Aging: Growing Old and Living Well in an Over-treated Society by Nortin Hadler. It’s a tough read with all the statistics that make my eyes cross, but he makes the case that we are over-scanning and testing ourselves unnecessarily.

I felt this way when my siblings and I were caregiving for our parents prior to them both entering a nursing home. It was a revolving door of appointments. My brother who had medical POA was afraid to second guess the doctors. I remember asking an 86 year old woman who lived in my neighborhood how often she went to the doctor, and she said that she saw one doctor once a year for a checkup. I couldn’t believe it!

Within reason, I would respect your parents’ right to say no to numerous scans, tests and appointments, especially since they can do so many ADL’s. My parents had both moderate dementia and very little mobility, so health decisions had to be made mainly by us. I think this is where the ambivalence comes in to play when you have to make health decisions for someone else who is incapable of doing so. I think we tend to err on the side of caution and end up participating in the over-medicalization of the elderly.

When I finally got my folks in care the first thing I did was sign them up with the in house doc and dumped their long time doc who was constantly referring them to specialists all over the damn place. At this point my mom was a 2 person assist and dad didn’t even know where he was. The GP referred dad to a dermo guy for a spot on his face, the dermo guy referred dad to an oncologist who referred him to a plastic surgeon...................And they all wanted follow ups.

for me it boiled down to how much time do these folks have left? They’re miserable enough as it is. Should their last months/year be spent getting hauled around to hospitals and specialists? Should dad have 12 consecutive days of radiation then 3 procedures for plastic surgery? Should mom have all her teeth pulled and get dentures at 86 ?

mom died about 6 weeks after the dental guys wanted to pull her teeth. Dad is in memory care. They put a cream on the spot on his face daily. I just paid a bill to some telemetric cardio group in Houston Texas her doc ordered 2 years ago.

its hard not to get caught up in the whole medical establishment sinkhole. We feel guilty if we don’t do what each and every doc says. I’m not anti doctor. They’re just doing what they’re trained to do but it can get ridiculous.

I wouldn't just not take them, I would cancel the unneeded/unwanted appointments. As far as tests and scans go, I would ask the doctor ordering the test/scan what he expected or wanted to find and how that would impact treatment choices. If there's no way you would agree to any of the treatment choices then there's absolutely no reason to have the tests/scans.

Last fall my mother had a fall at 86. It wasn't a "bad" fall compared to some others she had experienced in the past, but this time the leg injury was something she was unlikely to ever fully recover from. The surgery required to have any chance at a full recovery is difficult and risky for someone 40 years old. For my mother, odds were about 50/50 complications would be fatal or require an above knee amputation - not even considering that the anesthesia would likely degrade her cognitive functioning greatly too. I made the switch from wanting treatments to restore "full" function to conservative treatments (like PT) to provide "good enough" function and allow my mother to be reasonably comfortable. She will never walk normally again, but she can walk a limited number of steps every day with the help of a walker; too many steps and her leg swells and is painful. She can transfer from the bed to her wheel chair, take it down the hall to the open common room, and pull up to her favorite spot at the dining room table and read the newspaper in the morning sunlight.

That transition, where we change from wanting our LO to get "better" to wanting to maintain as much comfort as possible while acknowledging that he/she will never be "well" again is confusing and painful and very sad. Even after you make that transition it will come back up every time your LO faces some crisis. Keep in mind your parents' wishes and keep a comfort care plan. Quality of life is better than quantity.

Thank you for bringing this question up. I have had these same thoughts with MIL! But she's the reverse of yours: she loves the appointments and I find them unnecessary and usually they are so very pointless. I wish I could get her to quit making stupid follow-up appointments for nothing!

She broke her hip Oct. 31 last year and had surgery. She was not compliant with the things they needed her to do after the surgery (not crossing legs past the mid-line was the worst! The nurses in the hospital pretty much gave up on that on post-op day 2) and then, not very compliant throughout rehab stay with anything the therapists asked of her or restrictions they gave her -- result: she has pain in that leg (and likely will for life), limps badly and can't be on her feet long, will require a walker instead of a cane - probably for life.

We've been to several follow-up appts. with the Ortho who repaired the hip. They are always a battle because I have to take her to his office, one town over (45 minutes away) because he's not in his local office on the one afternoon I have available each month. She doesn't believe it's the same doctor who did her surgery and so it's a battle for a few weeks leading up to it ("I don't know why calico insists on taking me to HER doctor in that other town, I need to go right there on 10th street and see MY doctor" *sigh*) She complains to all family members who come near her.

And then the appointment is literally: nurse takes vitals, asks about meds, they take an xray and then Dr. comes in "the hip looks great, you are doing good. See you in XX months" and out the door. 5 minutes with the doctor, tops!

She likes the attention from the staff & doctor, she LOVES picking fights and stirring drama with everyone over it being the "wrong" doctor, and despite her complaining about the drive - she loves an excuse to get out.

For all the things she mixes up and forgets, she never forgets a doctor's appointment - so as long as he says the words "See you back . . . " then she's going to set the appointment. I just think it's such a waste of time and money :(

I had to really think about my answer here...I am also taking my 90 plus parents to all of their appointments, and it is a time consuming and exhausting process.
Sometimes I agree it is a waste of time, but upon further reflection, it has resulted in a better quality of life for them. For example:
Mom has COPD and asthma. Every spring she was landing in the hospital because she thought she was having a heart attack. Her pulmonologist provided overnight oxygen and a nebulizer and guess what? This year no hospital visit!
Mom also has aortic stenosis and vascular dementia. Not sure a trip to cardiologist every 6 months is necessary, but if her heart gets much worse, we will know how to help her and whether she may need hospice, so we keep that appointment. We also changed her EKG from being done at hospital to an in-home service, so one less appointment.
We recently saw a neurologist who eliminated one of her meds and told my dad the quack treatments he wanted to try were a waste. That visit was worth its weight in gold; dad has stopped with all the quack cures and since removing the one medication, she has not had a bad fall and her PCP has stopped being concerned about a pain med she takes as needed. The neurologist said I can bring her annually or as needed... we opted for the latter.
Dermatology every 6 months is a must for both parents as they have had many bouts of skin cancer; however we see a PA not an MD and appointments are scheduled back to back. Mom has had 2 cancerous growths removed from her legs in the past year.
My dad has had prostate cancer for 20 years... his treatment is a once a month shot. However, his kidney function is also Stage 4. Urologist convinced him to see a nephrologist rather than PCP. In a few months, his potassium levels and blood pressure have returned to normal for his age, where the PCP had not had success and it looked like the end was near.
Altho dad also has congestive heart failure, he does not see a cardiologist. In this case all three of his doctors are monitoring and there is little that can be done at age 94. He takes so many meds that one more would probably do more harm than good.
So to wrap this up, there is benefit to the specialists, to a point. My bottom line is whether they improve quality of life. My dad will not do dialysis, so we know the limit there. Our parents have the right to choose what care they want and do not want, but I suggest talking to them about their healthcare goals so you can see if their doctors and treatment plans are aligned. In my dad's case, he wants to outlive my mom...so sweet. Whatever it takes to work toward that goal. To meet that goal, he had to accept going to a nephrologist. His urologist told him if he wanted to outlive his wife that's what he needed to do. Smart man!

No you are not being neglectful. "They really don't like going to so many medical appointments."

Remember that many doctors treat Medicare like a cash cow. And they will milk that cow for as long as possible.

You have to determine which appointments are neccassary and which are frivolous.
I personally have had cancer twice and a heart attack. Thankfully I have good medical insurance. I challenge my Drs. Do we really need this? What are you looking to get out of it? IE the data. How will this data serve me? After my Colon cancer they wanted me to go thru a brutal chemo rutine for 6 months I asked a lot of questions, spoke to others that had had it determined the risks out weighed the reward. Then they wanted to do MRIs every three months. Not only the time but out of pocket expense. it was "precautanary". I asked my chemo Dr and my GI surgen we decided on every 6 months. Ask hard questions. Do some research on the internet at places like John Hopkins, medMD. Find people that have parents in a similar situation compare notes. Also use common sense.

Your instinct, and your father's clearly expressed wish, and your father's PCP's response, are all entirely respectable and ethical as a point of view when it comes to the practice of medicine in older age.

When you're deciding whether or not a particular appointment should be made and attended, a question you might like to ask yourself is "are we just looking for trouble?" But be upfront about it: if you don't see the point of a particular appointment say so, don't just not go. Apart from its being plain good manners, of course, there may be a point to the investigation that you weren't previously aware of and the practitioner should get an opportunity to explain.

Two other key questions are:
what benefit is this intended to offer my loved one?
what happens if we don't do this?

There comes a point when it's better to be guided by symptoms, to treat anything that is actively troubling the person and pretty much leave the rest be. We all of us, if someone stuck us in a scanner, are full of lumps and bumps and spots and blots; and we'll mostly die with them, not of them.

My 80 yo mom refuses to go to her appointments, I only make her if i think she is really sick. The endless referral and check up appointments drive her more crazy, and she would really just rather stay home. Try not to feel guilty, there are others of us making the same choices as you. I too hope that my mom will pass way of something else before her dementia becomes so severe that I have to put her somewhere. Best of luck to you.

No you are not being neglectful.

I don't understand the whole nothing I can do, but bill you for unnecessary appointments that only cost me about 5 minutes max. So come back !

I agree with other posters that say use your best judgment and prioritize.

I saw my dad go from his death bed to a functioning senior because he was getting the medical care he required, but I asked questions if I felt like he was just being seen for the insurance payment. I also asked his necessary specialists questions about his health and what to watch for so they knew that if anything changed that should be seen I would get him in. He was only seeing his cardiologist and nephrologist every 6 months when he left. He had recovered quite well and they were doctors with integrity. Not easy to find unfortunately.

My husband's pulmonologist had him coming in every month and after the 5th month of alls well I asked what the purpose of monthly visits were, he said he didn't need to see him again unless he had problems. Nice.

Do not feel guilty following their choices that were made when they were of sound mind, that's what they want and God bless them for giving you the gift of just following their wishes and not having to make decisions.

My 93 yo mother who lives with me has dementia/Alzheimers and doesn't do well at drs appointments at all. In fact, it's torture! She developed a small bed sore on her tailbone after a month long hospital stay. Home health visited her twice weekly to change dressings etc. It was healing but slooowly. She gained weight from 86 pounds to 110 pounds which helped tremendously putting some extra "padding" back there. Anyway the "bedsore" got down to a pinhole size that you needed a magnifying glass to see and no bleeding or rawness...for lack of a better word. However since there was still a lil hole home health asked that she see a wound specialist. They recommended a clinic but warned us of the long wait time there. I took my mother once a month. First couple appts were 2 hour wait time before being called back! My poor mother was miserable! She would ask patients waiting to be seen how to get outta there. It was terrible! Dr put her on silvadene cream which really improved it but then at the next appointment changed to something that didn't work and back and forth back and forth and even went back to a treatment that didn't work before ...crazy. The craziest part though was putting my mother through all that for a microscopic hole. The last time we were there our wait time was 4 hours!!! They had to literally pull my mother out of a wheelchair to a standing position to even examine her because she was so exhausted from the wait...and she was still mobile then. When the Dr came in I told him we wanted to be dismissed that it was just too much for her so he said return if didn't heal. I decided to switch her back to Silvadene cream which was working in the first place and the microscopic hole is now closed. Know this was a long story but my point is sometimes with all these appointments we just have to consider if it's worth putting them through all of it. My mother was one that never wanted to go to drs anyway when her mind was good. I've gone through the guilt trips too wondering if I am doing the right thing but sometimes we have to trust our gut instinct. Good luck to you know it's hard making these decisions

It is very hard on the old folks. Doctors' offices do not take into account the amount of time it takes an old person to keep that 5-minute appointment for which Medicare gets $$$billed$$$.

For my FIL, it takes at least one hour for him to get ready to leave his apartment for any appointment. And, by the time he gets back home, he's exhausted and has to take an extra long nap.

Unless and until we the caregivers push back on unnecessary medical appointments and unnecessary spending by Medicare, nothing will change.

Gkcgkc - It sounds like you are doing very good things for your parents. I agree with your decisions about the suggested dr. appointments and do not think you are being neglectful. We know our own situations, and we know what is best for us (or parents). I am open to getting a doctor's opinion, but default to my own instincts which might not be the same as the doctor's. I do tend to think they schedule too many "follow up" and "monitoring" appointments without looking at the big picture. I guess that is where our judgement comes in. If there is a problem, you can usually tell. If or when that happens, then the doctor will have an obvious situation to treat without additional "testing" to find a problem you never knew you had.

Great job with your parents, I honestly don't know how you do it all. Please do decrease the amount of medical appts your parents have. I don't know who could help you choose which ones to prioritize tho. I had similar issue with my mother, except that she was always adding another specialist for me to drive her to. It got absurd, between various Drs, dentist, grocery & bank trips, haircuts, lab work, ect

Do not feel guilty by following their directions.
Ive told my children over and over what I want/do not want. I have to trust them to follow through.
Follow through for your parents.

They have expressed their wishes to the effect they do not want life-prolonging procedures and doctors have both signed their advance directives (I hope that you are also their power of attorney for health care, this needing to be done when they are lucid). The doctors have signed and have noted in their charts their wishes. Certainly you do not have to be doing scans and tests, which are the cash cows of the medical system with elders. Simply explain to the doctors that, were something to be "found" on the tests, it would not be treated, as that has always been your parent's express wish to you all of their lives; You should immediately ask for a Palliative Care Consult and POLSTS should be made out and hung on the refrigerator so that your parents are not resucitating in the event they are found peacefully gone at home; otherwise the emergency response team is by law required to attempt resuscitation. The first step is for you to go with your parents to their primary physician. To tell him that of course any medical conditions such as pneumonia, etc. will be treated, but that there will no longer be medical tests on heart, kidney, lungs, etc, which are undoubtedly now failing, as is the natural course of end of life; you should explain wish for palliative care. If there is any balking you may need the support of licensed social worker who works in end of life care. The parent who is still lucid should sign all papers, be with you at the appointment. Good luck to you all.

First I have to wonder why if they want nothing done to extend their lives why the scans? If they would do nothing if "something" were found why the testing?
If the doctor appointments are for something other than truly necessary scheduled visits do not make any more.
Make sure they have a DNR or better yet a POLST signed. A POLST is a Physicians Order for Life Sustaining Treatment. Much more detailed than a DNR.
Once you have the document signed make copies. Have a copy with you at all times, a copy with each of them in a purse or wallet and a copy hanging on the refrigerator so First Responders can see it right away. And make sure one is in each of their medical files. Better in their EMR (electronic medical record)
If the POLST is not available when first responders arrive or if they go to the hospital they will do what they can to save them. (same if what you have is a DNR, if they don't have it it does not exist )
Keep necessary appointments and if a doctor wants to schedule a test ask why and if they want to see them more than what would be routine ask why.

Never lose sight of the knowledge you have within. No one knows better than you, who has known them longest, what they want/desire. It's sort of like you managing a paliative care plan. You want to do the essential visits to make sure they have access to the meds that keep them comfortable. Do they have living wills, POA's in place for health care? That can be your guide. As for the MD's who seem to be the ones forcing these visits...it smells very much like our local hospital system that churns patients for more visits the system can brag about (we've served a zillion million etc) and especially more $$$$$ even though they are NON profit. You might be able to engage a home care nurse to monitor things. Otherwise you could consider what, once a year? Unless something serious crops up. You have to change your mindset. It's not neglect, it's being a tuned in caring daughter watching out for their comfort and well-being, and if avoiding non-essential visits makes them happier and comfortable, so be it. As I write this, I realized this past week that oops, I forgot to schedule a routine 6 month follow-up for my parents MD. In the past we had an MD we loved. Even me who hates MD's:-) This one I am trying too hard to like. So I'm almost glad I forgot and I'm going to ask Dad if he'd like to try someone else. Mom would never agree to going at this point because she has dementia and thinks she is fine or thinks someone will find out she isn't. We get her to go by booking appts back to back for both. I announce on arrival that Mom DOES NOT have an appt (wink wink/eye roll) and they do what they can...weigh her if she'll go along, and the MD does a quick listen to her heart ($$) so he can bill...and usually dad being deaf takes up all of mom's time anyhow. It takes time, but hopefully you will learn not to sweat this stuff and just let it go. It's been hard for me but I'm getting better at it.

Your parents were clear they did not want special life extending care. Their primary acknowledges it. Keep the periodic appointments with the primary. Judge any findings on it's own marrit. Your dr is documenting and he agrees. There's no neglect there. I have been in the same situation. Sometimes you want to rush in and get them "all better." But, what is better for them does not mean they have to be made miserable with all the proceedures drs want to do. You are being an advocate for what your parents said their wishes are. "Find" a support for yourself who understands to bounce decisions off of. Talking it through helps. Good luck.

gkcgkc You are beating Yourself up needlessly. Your Dad is 89 years and Your Mom is 85 years. While I know Your Mom has dementia and Your Dad has a weak heart hence ask Yourself how many years longer do You think Your Parents will live by attending to all of their Hospital appointments ? not to mention the stress these appointments put on Your Parents. In my honest opinion I would ignore the appointments as I did when I was Caring for my Late Mother
who had alzheimer's simply because I could see how much stress those Hospital appointments put on Mom plus waiting in the Hospital corridors for hours and then finally to be seen by a Baby Doctor Who was fresh out of Training College. This was all just a learning exercise. I know Junior Doctors need to gain experience but at what cost ? Why not call to the Patients Home to examine Them instead.

First...you taking care of both parents is a huge task, challenge...whatever you want to call it.
Ask & talk with you folks as best you can, whether they want all these medical visits. Every six months is norm for most doctors, especially for elderly on medicare. I think this is medicare's wellness thing they do. But doctors will push things to be done when really, why?
Referral appointments? Well, your folks don't want to do these! They have their will & say so. When the doctor wants to refer them to other care, in front of the doctor, ask your folks if they want to. Let them decide. If they say yes, then appoint(s) get scheduled. If they change their mind before appointment, then cancel it letting their primary doctor know of cancellation.
What ever your folks want to do, then do this.
Don't stress, fret, feel sad or bad, be frustrated, etc. It's not easy because you care for & love them & want the best. Yet, you as caregiver for both your parents & coupled with your personal life with all its actuvity & stresses, etc., your relief avenue is actually simple. Let your parents be themselves where they are & decisions they make. Just watch for them, protect them, but always discuss with them when they make decisions. Relax and enjoy mom & dad.

Quality of life is important, too. Near the end of life, what is the impact of endless visits to the doctor on your parents and the time you get to spend with them? Medical advances are wonderful, but have also intruded into our lives. My mom has Alzheimer's and congestive heart failure. I took her on tons of visits to the doctor last year before the diagnosis for both conditions was given. I've now decided, along with my mother, to keep visits to the doctor at a practical minimum and enjoy the time we have left together. I don't feel guilty about that, and nor should you.

My 90 year old, late stage Alzheimer's mom, is lucky enough to have Home Doc visits once a month and also recently Hospice nurses coming. Home Doc is actually a PA and his assistant. We decided to stop doing the routine labs, no more pacemaker checks, and nothing that will take her out of the house and force her to sit in a waiting room or doctor's office. I would take her if she had pain, which they couldn't manage from home, but otherwise she's done having any tests. She's still somewhat ambulatory but her anxiety and eyesight is such that riding in a car is just too much for her. We've had this philosophy for about a year, with Hospice coming on board in the last 3 months. The pacemaker has 7 years on the battery left, so I don't think we'll run in to any issues with that. It's all about her comfort and doing whatever we can to ease the anxiety and give her the best quality of life possible.

I agree with most and your parents. Less can be more. Care is in home, you are most in "tune" with needs/concerns.

Given age/conditions, and desire to avoid "special medical procedures to extend their lives", I would honor that. However those are generally extensive invasive treatments, such as major surgery, chemo, feeding tubes, etc. You can balance some sensibility into appointments/treatments by looking at the big picture:

Is it going to cause discomfort/pain or terminate life? Seek treatment is advised.
Is it going to take time and progress, treatment or not?  Seek palliative care only.

Examples:

Mom got cellulitis just prior to moving her to MC. She didn't know how bad it was, didn't get checked and didn't tell one of us (she told neighbor who called me.) THAT treatment saved her life and was non-invasive/not long term (longer than normal.)

Mom had leg pain – 1st time we had doc check/Xray - resolved itself. The 2nd time she complained of pain all day for many weeks, wouldn't get up/walk and often refused to eat. Doc RXes lots of Tylenol AND ibuprofen and says dementia patients can't express their pain. EXcuse me, what? Mom knows if she doesn't feel well AND lets everyone know!! ER before the doc appt, tested everything but no new Xray . I wasn’t happy about all the OTCs and made appt with ortho. The pain was gone, but did Xrays and said if she were 20 yrs younger we'd do knee replacement. I suspected that, because she said she needed to get her knees "done", but never did. I asked for injection as a preventative so we don't go through it  again!

She had basal cell on her face. She didn't listen to us. Until her mac deg doc told her to get it checked, she ignored it. By then it had spread, required longer treatment (Mohs surgery) AND plastic surgery! Sooner would have been better - less impact. Later found a spot on her cheek, took her to dermo. The treatment was Mohs, but I felt this wasn't feasible due to the dementia, so we had a "punch" biopsy. It required recheck and second deeper punch, but so far good. It IS a slow growing skin cancer, but facial skin is thin, didn't want THAT growing!

Although she has dementia and is almost 96, she still has quality of life left - extensive treatments? No. Something 'simple' that will treat a condition? Yes.

As for the "just to be cautious" appts, ask questions, what for, IF bad, what does it mean, what treatments, how invasive, how long, how detrimental to the very old, etc. Weigh the answers/make decisions from there. If "both doctors said it's probably nothing and do scans for a couple of more years to follow up" I would question the need. Ask what the symptoms are if it IS something and watch for them. Going every year is overkill. The negative impact on mom is probably worse than leaving it alone!

"My dad has extremely bad macular degeneration and the last retina specialist said there is nothing he can do, but still wants to see him every 6 months." This one is perplexing. If there’s nothing he can do, why does he need to see your dad??? Our mother has mac deg, treated for years and we CONTINUE treatment. Doing the "tests" prior to injection is difficult, because her hearing is shot/dementia, but we NEED to preserve her eyesight! So far it’s been working.

Neglect would only come into play if you NEVER take them (once/year might be sufficient, unless something needs to be monitored/treated to avoid pain and suffering.) Neglect might impact YOU if you noticed something was amiss and ignored it. Some conditions can be easily treated, but be painful and/or life-threatening if not treated. It is a supreme balancing act!

Your dad said he doesn't want the referral appointments and Dr said he respected that/made note of it  - that should eliminate any referrals, but you should be there during the discussion and if you see some sense in some referrals/treatments, and then try to convince dad.

gkcgkc- you said: "I feel quite bad saying "out loud" I hope my mum will pass away before the dementia gets bad. It almost feels like I am a bad person..."

I have the same hope, too. My mother has Alzheimer's going on year 3 now. I hope she will die before she has to be bedridden and in diapers, and loses all her faculty. That's not living. That's suffering. She doesn't want that for herself. I don't that for her, either. And I don't think it's wrong or bad for that to happen. It will be a relief for her and everyone else. I share that thought with close friends and relatives who understand the horror of the disease and the struggles of being a caregiver.

So, don't feel bad for hoping for the end to come. Don't beat yourself up. You're not a bad person. You're a good, decent, and caring person.

I am so grateful for this site and everyone on it....it is so comforting to know others have the same issues and that we have a place where we can offer each other support and tips.
I have struggled with this same issue. 89 yo Mom has been with me 8 years now. Her Dementia is progressing. We have good and bad days. I cherish the good moments and live a day or hour at a time. Planning for the future is so unpredictable.
She is fortunate to have some good drs but the long waits in the waiting room - after the 30 minute drive to the appointment and the hour to get her ready to go is a challenge for both of us — just to do a 10 minute visit.
After a recent broken tooth, I found an in home dentist that is coming for an exam next week -since I couldn’t get her to go in to any dentist - fingers crossed. ...Just trying to get an assessment of what may need to be done, if anything.
I wish there were more geriatric mobile physicians that did in home exams. It’s so tough finding geriatric physicians.
She needs an ekg, but I had to reschedule 3 times because she wouldn’t get up in time to make the last appointment of the day.
It would be so much easier on elders with dementia and their caregivers to have in home options or even more flexible office hours that would accommodate their oftentimes irregular sleep patterns;
having places with shorter wait times to get dementia patients in and out quickly would even be a help. I know when I go in to an apptmt now I am always willing to allow a senior or sick individual go ahead of me knowing how tough it is on them.

Hang in there everyone - this journey is making us all stronger and wiser. Xoxo

gkcgkc

What???? If you have to ask, the answer is ..... Some questions are best not to be asked! Especially on a forum like this. No one here can give you the absolution you seek. Not even if they think they can.