I am the caregiver for my 85 year old mum with dementia and 89 year old father with a weak heart.
Given their age, I think they are in pretty good shape. My mum has no short term memory and some delusions (she thinks my father has other women around). My dad uses a cane and gets tired very easily. They don't need help dressing, washing or eating and get around pretty well.
From conversations when they were healthy and younger, and also now in their lucid moments, they have both made it clear to me that they do not want any special medical procedures to extend their lives which I understand and agree with. Their primary care doctor also signed their advanced directives stating so.
I bring them to all their medical appointments and give them their meds. But there seems to always be more appointments "just to be cautious". Like my mum had a scan and it showed kidney and lung nodules. We followed up with CT/MRI scans and specialist appointments, but both doctors said it's probably nothing and do scans for a couple of more years to follow up. My mum is having more and more trouble following instructions which can make appts challenging unless the staff is v patient. 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.
They really don't like going to so many medical appointments. Do I just not bring them? I feel like I'm neglecting them. My father told the primary care Dr that he doesn't want to go to any of the referral appointments and the Dr said he respected that and made note of it.
I understand not wanting extreme measures taken in the event of heart failure or something, but is not bringing them to medical appointments the same thing? Am I being neglectful in not pushing them to follow through? To be honest, I'd rather my mum pass away of something before her dementia gets severe.
I'm so confused and have feelings of sadness, anger, frustration all mixed together.
Thanks for listening.
you ask the BIG ... WHY.. whne you next go to an appointment
It seems specialists are scared of legal implications if they say, dont bother coming..
your parents sound like mine were a good decade ago, luckily we dont live in the land of health means money.
so if one has macular degeneration and there is nothing to do then really all that should be needed is the right to attend if any problems arise. I just see your post is one that your parents are being bled to death $$$ and energy wise for no reason and they dont want it anyway.
You are not being negligent you are being practical.
Good luck and hope the non necessary stresses get reduced
I stayed out of my mom's care and now we both deeply regret it - she was just diagnosed with breast cancer and even at 84 wants to fight it within reason. If I had been more pro-active, she would have been getting mammograms every year, along with other maintenance care.
She didn't want to "fuss" and her primary let her get away with it. Now she wishes a little more fussing was done during those years.
Even though we are all taught that doctors knows best, they are all very fail-able. Bottom line is I can't force her to go nor can I force her to take any and all meds prescribed so when that day comes (and it will) I will not make her go to the appointments that she doesn't want to attend.
They would have high pressure due to anxiety in office, be given medications, fall over after getting up at night to pee. Be given surgeries not needed even, and certainly tests. They are the cash cows of the system and get passed from doctor to doctor.
There is a treasure trove of experience on this forum and everyone is so kind to take the time to share. It strengthens me. {{{hugs}}}
So we normally err on the side of caution, but we use our common sense about when to follow doctors’ advice. I’d suggest you do the same for your parents. Some follow ups are clearly unnecessary, some are just a way to make more money from something that is well and truly over, and some are to check for something that isn’t sensible to follow up anyway. Don’t feel guilty for using reasonable judgement yourself.
take charge of your life and what health is left and just say, NO!
I refused as a caregiver to sit in a waiting room and see a doctor to have their weight blood pressure and BP checked have a doctor look at them for five minutes and announce, everything‘s fine come back next month. I know they were getting a check from Medicare for that service but I did not have to be part of the game!
Now I manage care for a client (87) dementia, whose children want to take care of and fix every problem. She visits every specialist on the planet and is at the doctor constantly. I’m paid by the hour if that’s what they want. when they ask me I tell them, “frankly your mom is 87 we cannot fix the problems that she has”. They are just not ready to hear this, and they are still wanting to give me the appointments to take her to and payment for my time, so I indulge them! Their mother their choice, my job!
I'm going to start another thread about hospice care and how/when to go about it.
https://www.agingcare.com/articles/palliative-care-how-it-can-help-your-aging-parent-achieve-quality-of-life-136281.htm
My point is this: I don't think it's necessary to take your folks to tons of doctor's appointments, just as I don't think it's necessary for me to take my mother to this neurologist's follow up appointment. Palliative care should be considered at this point in life because let's face it; once dementia (which my mother has a 'moderate' case of) sets in, the quality of their life is drastically diminished. Add to that all sorts of other health issues and we can literally be at the doctor's office 5 days a week, with an occasional weekend at the hospital thrown in.
Just today, my mother was talking about all of her sisters and brothers who have passed away, and saying that her mother is always with her these days. She said she hopes to join them in heaven sometime soon. I hope she does too. Not because I want to be rid of her, but because the quality of her life is gone, and her pain & suffering has reached a very high level. Enough is enough. Try not to feel angry or guilty about your feelings, just accept that palliative care is the best thing for your folks at this stage of life.
All the best to you as you pass through this difficult time of life, my friend
We pared down my mother's appointments and specialists quite a bit during her last year or so of her life. In fact, one of the reasons she agreed to hospice is that it was an end to all those doctors' appointments, procedures and tests. She was even more sick of it than my sister and I were. She wanted to sit in her chair and read mystery novels and eat crackers. We pushed her only on things that were fairly acute and potentially curable, such as infections and obvious gastric bleeding.
There's no one right answer to this, but I'm satisfied with the choices we made for and with our mother, including foregoing certain referrals and treatments that would not have made a real difference for her in the long run.
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.
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
I live in Florida and we have the Home Docs and a couple of other outfits that will do home visits. They will come and draw blood, pick up urine samples, and bring a portable X-ray machine and sonogram and EKG to the house. They call with the results and bill Medicare or private insurance. They prescribed Hospice when the time came but are still her primary caregivers. They examine her each month, getting vitals, etc. They have been very helpful with palliative care. I don't know if they have these kinds of services in your state but if you found a home care dentist I'd not be surprised if there were other medical home care entities.
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.
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.
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.
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.
I feel so fortunate to have found this support group, I was really lost.
Do you have any idea how to get a home care nurse? Their PCP actually wrote a prescription for a visiting nurse, but no one at the hospital or doctor's office seems to have any idea how to go about getting one? Nor does anyone know if Medicare covers home nurse visits.
It's like a maze!
Yes, they both have POAs and advanced directives and the advanced directives are on file at the doctor's office.
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.
When I recently asked the Dr about a POLST he had no idea what I was talking about!
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.
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.
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.