My mother is in that vortex still where she isn't quite bad enough to be told what to do, but she doesn't take care of herself. What do I do?

SunnyM and Naia; mom was diagnosed with macular degeneration; actually had been years before when sent to the retinal specialist to be cleared for cataract surgery so...based on you two, maybe she would have been in basically the same situation regardless but from what I understood then I'd thought her sight was worse than it should have been just from that but she didn't realize that for a long time; she was supposed to have gone back after her cataract surgery but she didn't realize it so she never did but after her cataract surgery her eye would swell so she would go back to the practice that did her surgery and they would give her eye drops and a heavy ointment to put on it and send her home; she was supposed to make or have an appointment to see her surgeon but either she or they would never make one and then came that day when she saw her but didn't that she completely left and started going to another doctor that had another - ? - retinal specialist coming in - I say it that way because not sure why she felt the need of seeing one when she didn't remember she was supposed to be - who I ended up finding out had diagnosed her with a cornea issue but since he was a retinal specialist he just turned her over to the doctor whose practice she was at who tried to send her to the cornea specialist but since he in the same place she'd just come from she wouldn't go, none of which I knew at the time all this was going on, until the day the blisters she'd developed on her cornea - from the medication he'd been using to treat her for dry eye to stimulate tear production stimulated the fluid production from the back of her cornea causing the blisters to pop, causing her excruciating pain, causing her then to go in to him without an appointment, but causing him to want to send her, where? maybe because she'd already not been willing to go to the cornea specialist - but, again, I didn't know any of this - back to the retinal specialist she'd originally seen at his practice but since it was 2 hrs. away - even though, yes, dad's va was, too, but that was that - I got her back in with her original retinal doc, even though I also had had no idea she'd been supposed to have been seeing him all this time; well, not exactly her original because he couldn't see her but at least his practice with his new partner, who, after seeing her and treating the popped blister, then wanted me there regarding her cataract implant having become dislodged and needing removal, according to him, only problem is and somewhat understandably, who would have thought this would have had anything to do with her cornea issue, only problem is it ended up having everything to do with it, which, possibly had it been the other doc, who'd worked with them closely for years, he would have either know that or at least have either been more insistent that she see the cornea specialist just to be sure or less insistent on doing the retinal procedure regarding the implant, which we learned later was not nearly so emergent as we were led to believe; however, I knew none of this, so I guess, looking back, I guess I really was negligent but what was I supposed to do; she would not have wanted to go but maybe had I been more insistent I could have found out what had been the situation and resolved it but I had a lot going on with my own family at the time and it was just very hard

I found that VPA interesting, should we need something like this in the future so I looked it up. Sadly their current service locations are only in:

Florida, Illinois, Indiana, Kansas, Kentucky, Michigan, Missouri, Ohio, Texas, Virginia, Washington, and Wisconsin.

That could change at some point, but probably not in our mother's lifetime - we are nowhere near any of these states.

Google visiting Physcians Association( VPA) type in your zip code they will refer you to one near you. Call give all moms Medicare and insurance info they will be out within the week. When I couldn’t get my aunt out anymore, we found them. They saw her, sent out an X-ray tech, ultrasound and EKG. She was diagnosed with CHF on top of her Parkinson’s and Dementia. Prescribed her 2 meds and got us signed up with Hospice.
I had never heard of VPA it is the best kept secret in the world, that we need to spread to those who are taking care of the vulnerable !

I agree with Margret916. The first thing is to find out your Mom's thoughts. I gave you the On Being Mortal questions which are mentioned on the prepare site that Margret posted. The prepare site also goes on to how to interact with healthcare providers to get the what you and your mom out of their services. Another one is 5 wishes:      google.com/search?q=5+wishes+aging+with+dignity&rlz=1C1CHZL_enUS724US724&oq=5+wishes&aqs=chrome.5.69i57j0l5.20957j0j7&sourceid=chrome&ie=UTF-8       

This also talks about their more personal needs, such as does music bring comfort? and what type of music? and funeral wishes. Also I found with my FIL that asking these questions, would bring different answers at different points, so it is important to get as much information as possible and be clear this as you can that this is a true desire. Later on when the treatment they said they didn't want previously, they now want. you can ask 'this is what you said before, so you no longer want that? and/or why has it changed?'. As Margret said the medical team feels they need to treat. Yet I have found with my dad, if I gave them a reasonable answer of why we would not treat, they would agree. Ex A doctor wanted my dad to have a cardiac cath. I told him my dad would not sign consent until, I was sure my dad knew his options, because the risks during cardiac surgery to correct the problem was very high, because of his present condition. So the cath would have been to find something we would not have treated anyway. I explained to my dad what previous doctors have told us. He said but if I nothing done I could die. I confirmed that, and after 10 minutes of silence he said "ok, lets go get some onion sets, seed potatoes and peas". That was March, 4 years ago and he is still planting his gardens each year.

My mother was in a Memory Care center and would not go for her eye appt. She had macular degeneration and was going blind but it was slowly and she could not comprehend what she had. She would not let us dress her and she refused to go so we just stopped the appt. It was the same thing with her hair appointment which she use to love to go to. But, we cannot force them to do what we want them to do even if it is best for them. Once they don't comprehend what is happening to them, we just have to let them have their way. We must realize they no longer understand reasoning. It's best not to try and force them.

My Mother would not go to her eye appointments or even get her hair done, which was always a treat to her. We think she got where she did not want to get dressed to go out of the Memory care at all We would lay her clothes out and she would refuse to get dressed. She was going blind with her macular degeneration but she could not comprehend this and just refused to go to the doctor. So we just stopped taking her and she was happy. They just get to where they cannot comprehend what they need to do. Mother would not eat the food either. We had to bring food from home. With severe dementia they will not know where they are or why. Mother though she was just a little forgetful and did not understand just how debilitating dementia was. It was very difficult to care for her and our family. You just have to learn there limitations and live with them.

Debdaughter, I couldn't get my mom to agree to sign POA, cause she was afraid of my brother. After I brought mom to live with me, and she kept wanting to go back with my brother (who neglected her), the pediatrician signed a "medical incapacity" form. In Mom's moderate dementia, couldn't comprehend what she wanted was not medically & physically safe for her. So the form allowed me to make medical decisions for her (which led to c/h placement to prevent elopement). Also, Kaiser had mom complete a Health Care Directive with a Social Worker present.
Keep trying to convince her of the importance of a POA, for her benefit. I regret not trying harder, the road ahead will be very challenging. Wish you all the best.

Sheneedsme: I hear you! I really do! Before it was evident that I had to live with my mother (and I found out on the sly), she would take a ride to her doctor. Doctor says "what's wrong, N?" My mother's response "Oh, nothing." And the town van picks her up and takes her home. NOTHING ACCOMPLISHED!!

Hello
I think you have a lot of good advice to consider. I would ask you why does she need to go to the doctor? As a nurse, I can tell you that most older people have too many doctor's appointments. It often leads to more meds, and more treatments and more complications.
It may be time to ask yourself and your mom, what are her goals? What is it that she values for this period of her life? Frequently, when we feel people are being unreasonable, they are in their view, in a defensive position because they feel threatened. She may feel her autonomy is being lost with each decision others make for her own good.
I would encourage you to look at the website:
prepareforyourcare.org/welcome
It is a great resource with a video you can watch together to start the conversation of how she wants to live this part of her life.
I wish you well,
Margaret

The little tricks suggested sometimes work for those who have dementia, but not always. Someone who does not have dementia is not going to be easily tricked. They will know the direction, they will recognize the medical facility. There's just really no way to fudge that. Our mom has dementia, and even now still balks at going. Do I really have to? Now it IS more like dealing with that two year old! When she was still living at home she pulled this kind of stuff. What is kind of funny is that she would write down CANCEL on the calendar, but apparently wasn't following through (while telling me, on my way to pick her up, that she cancelled it!)

As for Sheneedsme's mom - if there is any way to get the doctor office to initiate a visit, that might help. Others suggested this, and yes, too often our parents do not want to listen to our advice or suggestions! I pointed out something on mom's face - oh that's been there a while. No, it hasn't. Brought it up again at the next visit - oh, it's just a scab. Nope. The eye specialist treating her macular degeneration told her she should go see the dermatologist and indeed she did! Oh, you can listen to him but not me? What should have been very simple to remove took hours of MOHS surgery and a skin graft.

Anyway, see if the doctor's office can get her to comply. If not, see if they can write orders to have a visiting nurse come to do an initial exam - if he/she deems more necessary, he/she can "push" mom to get her seen. Having multiple terrible headaches is not good. Perhaps she has fear of tumors or something - although it is possible, many of these are treatable, esp if found soon enough. See if you can discuss why she does not want to go. Explain headaches can have many causes, and many are treatable - why live in pain when we can have it taken care of! Be sure when she does go that she or you know exactly what kind of pain and specifically what part of her head hurts. I had mine brushed off as something incredibly simple and NOT related to the issue (turned out to be cervical spine disc.) He did not ask and so never found out that my pain began in the lower back of my head - if I did or was not to nip that in the bud, it would eventually take over my whole head, making it hurt to even move my eyeballs!

Anyway, you can certainly try making an appointment without telling her and at least get her there - she could still balk at going in, but hey mom, we're here, might as well go in! If not, trying to get someone to the home might help. Unfortunately if she is of sound mind it is her "right" to refuse. All you can do is try. It is not worth getting upset (either you or her), especially if the end result is going to be the same - refusal to go.

I have this issue times two! Both mom and dad...neither of whom is yet confused enough to be tricked into appointments.

Sheneedsme
Not sure if you’ve noticed but not even two year olds like to be told what to do. Life sure feels like it would be easier if we could just dress them up and keep them out of harms way. They are so vulnerable and precious. You’ve been given some good suggestions on getting her to work with you but it’s ongoing. Just this weekend my aunt (91) who has to have daily help was complaining that the only thing she was allowed to do for herself was wipe. That’s not my intention, we really try to give her what she wants and allow her to live her life.
I too am a big fan of “Being Mortal”. Please pick up that book and give it a read. It will help you better understand your mom’s issues from her view.
Welcome to the forum and let us know how it goes with the headaches.

Been there. Others have good suggestions about actual doctor appointments. Based on my experience, here are some other thoughts related to medical appts. While she is still mentally functional, get: HIPAA forms from the medical people (properly signed etc.); sign up for the doctors online medical records/contact/etc program; sign up for online pharmacy setup if there is one including you as an authorized person to speak to them, or, at least know what pharmacy she uses. Get medical wishes, POA, and a POLST form. (POLST is like a do-not-resusitate form, or DNR form, but it has various options besides DNR). Another thing which was a hassle was her state ID/drivers license, which had expired unbeknownst to me: the doctor offices wanted to verify ID at every visit. Banks want it too. Renewing before it expires is infinitely easier than hauling an elderly cognitively impaired person to the long line at the department of licensing.

Something that caught me by surprise was also the fact that many doctors would not accept new patients on Medicare, which is because they get paid very little by Medicare. My mother moved and had to find a new local doctor, and it was time-consuming to find one. So in the back of my mind would be the worry if she is refusing appointments for quite a long time, and therefore eventually becomes sort of a non-current patient, and has Medicare, possibly it will be hard to find a new doctor.

When my Mom would go to the doctor and later I'd ask how it went, etc., Mom wouldn't or didn't seem to remember everything said at her appointments. I started going with her to figure out exactly what was, and still is, going on with her. Now that I no longer work I make all of her appointments and drive her to them (I'm pretty sure she cancelled of her appointments in the past!). We go home and write them on her calendar. She has been on Stelara and just got her 3rd injection. She keeps saying that it's not working and the doctor and I keep saying you've got to try this and most likely it's going to take 6-9 months before you really notice a difference. Mom is more of "I want instant gratification" type of a person. We have a follow up with rheumatologist in 2 weeks. She called me the morning of "telling me she didn't feel well. She was nauseous." I said I will call to try to reschedule, however you remember we have follow up appointment with RA doctor so I'm not sure if we can move it. I could tell she was disappointed. I did call and was able to reschedule for the next Tuesday and still within time range to se RA doctor. I decided I'd give her the choice and it has worked out well. Good luck!!

I understand your concern and your situation completely. My mother was also in Vortex for many many years now she's in Alzheimer's a whole different situation but she still cancelling appointments over and over again. If she does not want to go she simply does not she refuses to clean up get dressed and cooperate. She's combative if you try to force her to and truly there is no answer to this. One thing that did help me, is I told her that they would charge her $50 for a last minute cancellation. At first this helped and then she simply did not care I wish I could help you all I can say is good luck and God bless you

Make the appointment and do not tell her. Also ask them to not confirm with HER.

that's the way my dad was - always he was "fine, just fine"; till his kidney doc, when he laying unresponsive in icu, said he was the sickest "fine" person he'd ever seen, but he did seem to be - until he had that last fall

My Mom didn't like to get out because it was so difficult to get her in and out of her wheelchair and in and out of the car. Sometimes I would get her out on the pretext that we were going out to breakfast or lunch. With the dementia she would forget that she had appointments so I would help her get ready and she would sometimes ask where we were going, but we would get her to her appointment. She was not always difficult, but sometimes you have to lie by omission. Make it a game, like once the appointment is over, have a treat - an outing to coffee shop, hobby shop, or lunch etc. With the dementia I would have to go in with her because her standard answer was she was fine and feeling well. I would note what problems or ailments came up between her appointments and let the doctor know. So in your Mom's case I would make the appointment, have her get ready and not tell her until you arrive at the doctor's office. Good luck!

naia, did you have poa? mom wouldn't give it, so there's no way I could make hers, but it was so sad to see her not make them, then she would have crises occur that she could walk in about but not really get taken care of, but she didn't understand how the walk in crisis worked, in that she would complain that she never got to see her actual doctor, at least not to be seen by her and she could somewhat tell herself that it was because she wasn't there till the one time when she did see her, so knew she was there but then still wasn't seen by here; that's when she walked out, found her another doctor, and wouldn't go back, and I didn't find out until after some pretty major things had happened what the situation had been because they wouldn't/couldn't because of HIPPA talk to me, but they did that day, of course the other had been on the phone because, being crisis, of course, never knew when it was going to happen, but that day I'd ended up being there so in person they told me all this

Become an advocate for your mom's care. Can you be authorized to make decisions for her (when Dr. deem it appropriate)? Whatever her reason for resisting, as stated above-focus on what you'll both do before or after that she'll enjoy. TIA can affect her thinking rationally, so you have to get creative to persuade her.
I made all my mom's appointments, and had them call me for follow-up. Doctors appreciated it. It's likely hard for your mom to give up some of her independence, but you know you're helping her b/c you love & care for her & her well-being.

My mom did the same thing. Last minute - she would say, I'm not going. Cancel it. I wasn't about to carry her into the car and force her to go. It was frustrating, to say the least. Fortunately I was able to get her to go and see a geriatric physician. She told me that I can't really do anything because she wants to do things on her own terms and that I can only do my best, to do what I can do and don't beat myself up or take any blame.

Ask there office not to call Mom to confirm appts. This is how she knows you made one. Ask that they take her phone number out and put yours in. Hopefully you have POAs in place. Also, ask that they only call you with test results, etc. Early on Mom would confuse what was said. And yes, it may end up with a hospital visit and even then she'll be stubborn. Good suggestions above.

Just do it. Lead up to the appointment with other fun outings. Go out for a pedicure or manicure together and create some fun bonding activities. Show her your love, so going out to the appointment is just a continuation of that love, not a judgement. But when you go, please keep an open mind and listen to her opinion. Don't make any immediate decisions and do lots of homework around what is discussed at the doctor's office. It may be that she doesn't want to do any kind of intervention and that is why she keeps putting it off. That is her prerogative; however, you can gently remind her that this is a fact-finding mission in order for her to make an informed decision. She needs to know that you support her, not dictate to her.

I'm only answering so you know you are not alone.

I would make appointments and the day before I'd get a call from Mom saying not to bother as she'd cancelled the appointment.

I believe in 'free choice' and believed my mother had the right - but basically she committed suicide by stopping all her medicines 6 months before passing. Stubborn doesn't even come close. I can still see and hear her 'proudly!' exclaiming at the doctor's office that she'd stopped all medications 6 months earlier. No one knew. A week later I sat with her as she passed.

Good Luck to you - you are in my prayers.

P.S.  My mother was 82 when she passed, leaving my father in my care.  It wasn't easy as I had to learn as I went - but Dad went on to live another 7.5 years with me assisting him.

My dad has had 2 fusions of the neck and has continual headaches. I have gotten him to the doctor, but he never followed the medical regime, saying he was not getting the relief he expected in the time frame he wanted, even though it was explained to him what to expect. I hope your experience is better. I recommend reading (also on audiobook) On Being Mortal by Atul Gawande. Here are 5 questions he says should be discussed to best help our love ones and keep our sanity. 1a What is your understanding of your situation? b What are the best possible outcomes? 2 What are your fears? 3 What are your hopes? 4 What trade offs are you willing to make? 5 What are you not willing to do? 6 What is a course of action that serves this understanding? Knowing her thoughts can guide you to seek care for her, but also get her cooperation. Keep in mind with TIAs this may take a lot of more directected questions. Ex Are you afraid the doctor will find a tumor? Are you afraid it may take surgery? Are you afraid there is no chance of relief?

I always found ways to convince my mom to go. Also she was hypervigilant about skin problems so I would say that was why we were going, but while there I would tell the doctor the real problems. He was great and would make a big deal out of her imagined skin cancer, but treat the other problems etc.. There are doctors that will come to the house too. Call the largest Senior Health Center near you for information on that.

sheneedsme, mine is in that same place! Welcome to the site. That is exactly it, I’m so glad you posted this query. I hardly ever post here, and/because I get the daily mailer with questions and there’s almost always one topic or more that helps me. I hope you’ll stay on board!

I was on the crux of making a dentist appt. without telling her in advance, and now I going to do it, thanks blannie! She keeps refusing but seriously needs to go. And like ceecee, I now have two offices that will call her for an appt. when I ask, instead of asking Mom week after week if she’s made an appt. yet. To cdn’s point, your mom’s insurance likely covers nurse visits on some schedule, if her doctor orders it. Mom’s doc is ready to order that whenever I ask... it helps that he has an assistant I communicate with, maybe a lot of docs have that now - she’s not his nurse or tech. And thank goodness because I’d never get through to him.

On this site I’ve learned that some fibbing, sleight of hand, etc., are all on the table because the elder is not thinking clearly. So use whatever method you need to get her in. Good luck!

Dear Sheneedsme,

I know you are doing the best you can for your mom. It is hard to see our parents age and at the same time fail to take the steps to safeguard their health.

My father was also very stubborn. Are you able to find a doctor that will make house calls? Or do you think getting a social worker to come to the house to talk to your mom about your concerns might help. Sometimes family members takes instructions better when it comes from someone else.

I know we don't want to fight with our parents and we only want the best for them. I hope you can find a way to persuade your mom to see the doctor. The one thing I wish I said to my dad was "dad I really love you and want you with us as long as possible." Instead it was this constant battle, but I hope you find a better balance.

Call her doctor, explain to them what you did to us and have them contact her for a “yearly exam”. Often the parent thinks that if a doctor wants to see them, then it’s legit. Rolls are being reversed, and sometimes we have to resort to trickery and white lies to protect them.

Could you schedule an appointment and not tell her ahead of time? I had to do that with my mom as she got older. I'd just go over, get her dressed (she was best in the morning) and off we'd go. Or take her to a walk-in clinic where you just walk in. Promise her lunch afterward or shopping or something she likes. I also did that with my mom. Good luck and keep us posted.