Thanks in advance for your advice.
I have been struggling to provide care for my mom who lives in another state. She had surgery on a broken ankle at the beginning of November, and it’s been a series a crises ever since, I flew in to help her in her home directly after the surgery, and my brother stayed with her the week after, at which point she seemed to be doing well. The week of Thanksgiving she started to have flulike symptoms, but refused to contact her doctor, even though we begged her to do so. She went to the ER but got frustrated waiting and left with antibiotics. Her symptoms persisted and again she refused to contact the doctor, That Sunday we insisted that she go back via ambulance and she was admitted with a serious kidney infection.
All of her tests were clear and she was released. I worked hard to get the attending doctor to prescribe home health for her (a nurse, PT and even a physician who would see her at the home). My hope was that this would be helpful as she cannot drive to appointments and her husband, who has early dementia cannot drive.
She did not appreciate this and was complaining of symptoms. I again contacted the doctors (she again would not) and they drew blood and did an ultrasound—all at their home since I persisted in the need for home care. Tests all came back clear.
She still is not eating regularly and reports vomiting. Hard for me to know for sure as she does not want to talk to me on the phone. My brothers and I have started calling her via conference call, and I have learned that her tone is different with me than my brother. I have no doubt that she doesn’t not feel well, but I am getting the impression that she seems to sound worse when it is me on the phone. She also constantly asks me to reschedule her in home health appointments because she doesn’t feel good. I do my best to accommodate, but it’s wearing me out on top of my full time job.
Fast forward to today. In a follow up for the ankle issue, we learned they need to operate again, and quickly, if they are unable to “revise” the previous surgery, they may need to fuse her ankle at 90 degrees or possibly amputate. I presume this is a complication with her advanced diabetes.
She apparently has said she feels very confident that she can recover at home. To me, this is setting us up for yet another crisis.
I feel like My brothers and I are doing our best to help her, but she shows again and again that she will not take at least some responsibility for her own health. I am having some negative effects from the constant stress of trying to coordinate her care and the fact that no matter what I do, it doesn’t seem to help. It is creating stress in my relationship and people are starting to reach out with concerns about my own health.
I am kind of at my wit’s end and really struggling with worry, anger, frustration, resentment and a deep sense of hopelessness.
I thank you in advance for any words of encouragement or advice, I love my mom, but I am having a very hard time knowing what else to do.
Have the Dr's take over and let them know what's what and they'll decide if your mom can go home after surgery or somewhere to recoup. Be sure and let the Dr's know the home situation and if you or anyone will be available to help your mom at home or she'll be on her own, so the Dr will be able to make an informed decision.
As long as your mom has her wits about her, she can do as she pleases and make up her on mind about things, even if her decisions aren't what you want.
You might hVe cameras installed at the house so you can keep an eye on both your mom and dad 24 7 with your laptop or cell.
I had my son install Nest Cameras in my 96 yr old Dad's house who has Caregivers.
The system is easy to use and not hard to install.
Prayers
The ankle issue will be a nightmare. She should go to a rehab facility post op. Husband will need caregiver either at his home or he will need to be admitted to a facility somewhere.
If the possibility of moving them closer to family if not suitable then they need assisted living or memory care. Ask their PCP for a social worker to help set up available care in their area.
Sister and I had to move both parents from SC to FL to a senior community so they had support. Mom is still in her senior apartment (dad passed) but she has family checking in often and a sitter 4 days a week.
Advice: stop.
You say that your mother is unwilling to take responsibility for her own health, but then you're not really letting her do that, are you, any of you? You're flying in to provide the care. You're driving her to the ER. You're setting up services.
HER ankle. HER health. HER choices.
Instead of telling her what to do, ask questions and go with her answers. Try to resist the urge to suggest solutions. Let her figure it out.
You mention that her husband has early stage dementia and can't drive. Could this be the main reason why she's refusing in-patient rehab, because she doesn't want to be away from home? Does she have any regular support with his care?
There are a couple of approaches to take:
1 - Have her doctor evaluate her for mental competency - she may also have some dementia as well as dad. If she is not mentally competent, then whoever has powers of attorney for medical and financial can step in to "help" her into getting the care she needs.
2 - Talk to mom about allowing others to help her and dad in their home: family, friends, members of faith community, and paid help. Folks can take care of grocery shopping, help keep finances straight, clean house, bring meals, socialize, and be your eyes and ears about their health.
3 - Have a family meeting about the concerns with your parents. It seems that they can not live so far away from family. Maybe they can move in with family or in the same town in an assisted living/senior apartment. Then, a designated family member can provide over watch for their care.
Usually recurrent medical problems are the sign that a person can not live independently any more. Please get your family rallied to step in and help.
If they do an operation and she has to go to rehab, ask here what the plan will be for husband if she cannot return home right away. He cannot stay alone and her recovery means she can't take care of him. She may think she can recover at home, but perhaps you can have the doctor tell her she can't. You might even try the firmer message of - if you can't take care of yourself or husband, you're both going to end up in a facility because medical staff are going to report you being at home alone. You aren't interested in going to jail for neglecting her, so it's important to have a better plan that she has. You might ask if she has a facility picked out where they can both live together.
She has about 30 illnesses, conditions, whatever, that she is trying to navigate care for. One makes another worse, she routinely ditches out on Dr appts and then cries and cries b/c she is in so much pain---but will NOT make the effort to coordinate her care--she NEEDS ONE Dr. orchestrating all of her care and leading her to the help she needs. I know she goes to several different Drs at different clinics in different 'places'--so all her medical history is spread out amongst about 4 different hospital/clinic settings, rather than ONE, or maybe two. And she doesn't bother to have that information 'coordinated'....so every new dr is a new long visit...
Mental illness being the biggest problem, but she won't see a psychiatrist b/c of the stigma attached. Won't have the vein ablation b/c she thinks the Drs will see her ugly naked body and make fun of her. Same with a colonoscopy. List is endless.
My friend begs me to come to her house for an evening when this niece comes--b/c it's just a few hours of awful. Her aunt has been more than kind and compassionate, taking her to the few drs appts she WILL go to...but what she really needs is for someone to step up and just haul her around and force her...and of course, that isn't going to happen!! (Her Dh is on the brink of divorcing her, he's had it, and I cannot say I don't agree with him.)
Personally, I think she is a huge hypochondriac, and of course, I don't SAY that, I used to try to help her out with names of Drs. etc I knew who would be in her 'plan' and try to educate her a little about the dxes she'd get, how the meds from one illness can exacerbate the problems with others.
Didn't take long to realize she doesn't WANT to be well. She WANTS the drama, and nobody can help her, b/c she truly doesn't want it.
Luckily, I am not emotionally bound to her in any way. I go hang out with her and my friend simply to give my poor friend a break!
IF you want to help--and if this woman were my sister, I would step up and be aggressive in helping--to a point. But YOU can't go get a colonoscopy for a friend, much as you might be willing to :) You also cannot give blood for them.
I try to listen, to a point and then change the subject. If she were even slightly willing to take responsibility for her own health, she would not be in this shape.
After the calamity I had today with, "I can't come over for your beautiful Christmas dinner you did in my honor," (paraphrasing my mom here), I have decided that some parents stay stuck, or dare I say, addicted to being sick. It gets them the attention, everyone is fussing after them and 'oh look how everyone loves me,' and their emotional needs get met by you and yours breaking your back (or another part of your anatomy) to do 100% of what they need and get 10% of their gratitude and appreciation.
She doesn't take responsibility for her own health because there's something that says she doesn't have to. "My daughter will ______" fill in the blank. "My sons will ________." We think we are caring for them by preventing things from happening - which for the most part is helpful, but when they a) fail to take their meds or b) fall, or c) I need to go to the doctor for x,y,z... that's when it's time to ask them what's really going on. To that, I have told my mother to make an appointment with her general physician so that I can "ask questions and voice some concerns."
She has yet to do so.
Semi-independance.
Crises.
Demise.
Your Mother is in crises. This can be TEMPORARY & she will get back to semi-independant with rehab then hopefully full independence again. There could be denial of aging/illness... in which a round or two of crises-hospital-home-not coping-crises-hospital etc may open her eyes. Then she may 'get it' & accept that she NEEDS rehab to break the cycle. Or she will be back to square one - back into crises mode very very quickly.
Now being the caregiver for her Husband with start of dementia... THIS.
This may well be her top priority, to get home to care for him. This may be deluding her judgement about her own health & recovery. The hospital Social worker can work with her to get a plan. He may need assessment & respite care or home aides or even APS is left alone & unsafe to do so.
How very hard for you to watch & listen from afar!
But even if you lived in the next street, you would be at this same junction. She not budging & you would feel the pressure to arrive Mary Poppins style to save the day. Resist that notion. It will only wear you out & delay Mother & her Husband getting LONG term plans they now both need.
Mom refused to go to rehab and insists on going home tomorrow. She is mentally competent, so there is nothing we can do. For the first time, I actually broke down crying while talking to her and told her how worried I am. I have really tried not to let her know how upset or stressed I have been for fear of upsetting her. I knew it would upset her to see one of her children upset. I was wrong. I was met with an annoyed “this is getting ridiculous.” There was no understanding or compassion from her.
I cannot force her to accept care. At this point all I can do is try to help coordinate home health for her, support my brothers as best I can and start working on boundaries. My relationship with her has not been great for a while. She has grown very negative (even before the health crises) and has little interest in my life. This is bringing back memories of things like her saying “(insert husband’s name her) talks to you more than he talks to me.” Or “ you know it was your dad’s fault” after they divorced. I was a kid.
It has been a very sad Christmas because I think I have to admit that my relationship with her is damaged.
A therapist is really gonna earn their money working through this with me.
My own mom is trending toward another decline that is sure to put her in the hospital again. I told her if it happened again I would not stay with her for another 3 months to watch her lie around in bed and watch me empty her commode and listen to her yell at me for asking her to bathe. "I never did that," she said. Sure, I lie 24 hours a day don't I. She would have to immediately go to a rehab facility to be able to safely come home. "Oh, I won't need that," she said.
I told her she would because there wouldn't be me or my brothers there to stay with her and care for her. Only private paid care would be allowed to assess the situation and oversee the care. That didn't go well.
Make a therapist rich. I did.
But it's working for me so I hope she enjoys the new Mercedes.
I would not reschedule her appointments for her, even if she is not feeling well. Umm, isn't that kind of why you need in home help? My mom tried that with her PT and I would not play a part in it. She was annoyed with me, but did cooperate with the therapist when they arrived as scheduled. They often seem to look for any excuse not to do what they're supposed to do. Sorry mom, they are already on their way so just do your best!
Since you are handling appointments for her and calling doctors and lobbying for her, etc., it appears that she has at least some level of cognitive decline. Otherwise she'd be handling it herself.
Is your sibling helping, besides being on video calls? Don't take on more than you can handle. If people are questioning your stress and health due to this, you are doing too much. Set some boundaries and put yourself first. You can still help her but you can figure out how to better do it on your own terms.
If she takes no responsibility for her own well being, and IF she is competent to make such a poor choice, then I think you can dial back any sense of urgency at getting things done for her. IF there is any question about her ability to navigate these complicated medical issues, then she needs help, but it can still be done a little more at your pace as opposed to dropping everything and addressing all her issues ASAP.
Good luck.
I am very sorry. This is the fact without a support system, and so many are attempting to deal with these impossible situations. You cannot know what is going on from another state. Just so sorry. Have no idea what to tell you, and it must be such a worry with Dad having dementia.
My own mother has decided to stop going to Dr's appointments, taking her meds, and her Dr recommended palliative care and she refused. It is her choice and she has to live with it!
I know this is probably not what you want to hear, but really, there is no point in wearing yourself out for someone who doesn't want care.
I am sorry that your mom has put you and your brothers in a hard spot.
Gold Luck!