My soon to be 92 year old mother is in an excellent AL. The meals are excellent. The problem is that she refuses to eat them. She orders candy and cookies and microwave pancakes to be delivered from a local grocery store. She has congestive heart failure and is on oxygen 24/7. She is ending up in the ER almost weekly because she has trouble breathing. Each time, the physician tells us that it is because of poor nutrition. Yet, she won’t listen. She is furious with the AL nurses who try to get her to eat properly. She lashes out at me. Her physician will not activate her POA’s despite my mother wanting me to handle her finances. As a result, I can not get her credit card away from her and can not stop these grocery store deliveries. I am an attorney who is required to be in court almost daily. Judges do not simply allow us to not show up at court when the ER and hospitalization calls come. We are not allowed to have cell phones in the courtroom. If I would not show up at court without the judges permission, I would be fined or held in contempt. The client can file a malpractice claim or a complaint with the State Bar that can take away my livelihood. Yesterday, I was preparing for a trial for today when the calls came. She had to go to the ER by ambulance. We could not reach the judge to have permission for an adjournment until a few minutes before I needed to be in the car on the way to the trial. My staff is upset because this is becoming almost weekly for the same reasons. I don’t always have someone to cover for me to be available at the hospital or to talk to medical providers. I am the primary financial support for my family. I have no one else in the family to back me up. I am at my wits end! Even my dogs are messing in the house because they sense my stress. Even lawyers have aging parent issues and feel powerless. Any suggestions as to how to handle this if the primary physician won’t help? The judges have had it with me about this and it can’t exactly be easy on my mother.
For a long time, the renal dietician sent home notes and recipes for me, as if I could somehow force feed her nutritious, renal-appropriate meals. But what am I supposed to do, really? She is nearly 80. She is a grown up. It's always been against her wishes that she be fed through a tube, and what quality of life would that be anyway? I've had to accept - and the renal team has had to accept - that her life will be shorter, and there's nothing any of us can do about it.
As for the ER phone calls - I agree with the others above. Unless the message is that the priest or the minister has been called in, I don't see why you have to rush to her side.
Shes doing what she wants. Older people lose so much in life and they may not choose things we like. But still let her choose. She is aware of the consequences.
And also a YES vote for letting the AL staff handle her ER visits and report back to you.
Your presence at ER makes no difference to her, but your absence in court is going to lose you your job eventually.
If your mother wants you to take over her finances, she can invoke the POA, even if she is competent. At least that is how it is here in BC. My Dad did this. My brother is POA and Dad although competent, has no interest in managing his affairs. No doctor was involved in 'activating' the POA.
I think the questions to ask are "How much longer would Mum live if she eats properly?" "What sort of death should she expect if she does not eat properly?"
At 92, what is her quality of life with the sweets and without?
I remember great grandpa's brother would only eat hotdogs for the last 15 years of his life. Yes, he lived 15 years on hotdogs. He was happy. Another senior I know only ate Campbell's Cheddar Cheese soup for about the same length of time.
Time to establish some boundaries with Mum and the home. Tell Mum you cannot leave work to meet her at the hospital. If you have time after work you will stop by to check up on her. Tell the AL, they can leave a message with your EA during business hours, you will not answer your phone between 1 hour before work or whatever your commute time is and when you finish work. If there is a true emergency, as opposed to a weekly trip to the hospital, they can call your EA and your EA will get a message to you at the court house.
I used to work for couple different lawyers as a nanny, I only called work once, when one of the children was stung multiple times and I had to give medication. By law, I could not give medication without permission.
Your problem can't be more important to me than it is to you.
If your mom understands the diet she needs to follow and she won't, then it's her choice.
What good is life if you can't enjoy it? She's 92 for Heaven's sake. Let her eat what she wants. No offense but her clock is ticking. My mom is 95 and I sneak chocolate bars in the memory care occasionally. They say it conflicts with her medication but they're wrong. I've researched it.
They don't need you in the ER. Have them call you with a report. Have the AL send a transport person with her.
No patient I've had in the 39 years as a nurse had breathing problems from "poor nutrition". It's a crock. Maybe she eats too much salty food and she has fluid retention. Tell her to keep the salty foods out of her diet. If she won't, then she'll have to go to ER frequently. Try not to stress about it. It's how she wants to play it.
I know you are busy but pick up the book “Being Mortal: Medication and What’s Really Important”
By Atul Gawande.
This book has the ability to help the reader reframe their view of what the end of life looks like to our elders and how we can support them in their wishes for how they want to live out their lives rather than our sometimes misquided notion that keeping our loved ones safe and tucked away in a facility is doing our job.
Hey I’d be upset if she was yanking my chain with frequent ER trips but give yourself permission to allow her to live her life as she sees fit. If part of that includes a frequent ER trip then so be it. Release the responsibility to accompany her to others who can report to you later all that transpired. By now the hospital knows her story.
My mom with CHF watched her food like a hawk. She was super compliant on all her medications and diet restrictions. She wasn’t happy during this time but she was alive. She seldom needed to visit the ER. Saw her doctor once a year. She worked hard (diet and exercise) right up to the end. She was motivated to live at all costs. She didn’t have dementia but when she was in her 60s she was in denial about the damage high BP can do. A dr had told her when she was young that she would never have to worry about her BP. BP Medication made her feel bad she said. It all caught up with her at about 90. Not bad for always doing what you wanted. People are living longer these days but the key is to live healthy longer. Your mom is not healthy regardless of where or what she eats.
On another note I am a firm believer that in a week to ten days a sugar addiction can be brought under control. It just takes abstinence. Actually for me it only takes about three days. It’s such a relief when I don’t have cravings but it takes very little to fall off the wagon. Again it’s her life.
Treat your anxiety about mom. Break the cycle of racing to the ER. Tell her goodbye and that you love her but that you won’t be back to the ER. Mean it.
Yes you can change her doctor, move her ALF but why is what you want for her more important than what she wants? Take a breath.
But, here’s my take: the facility my mom was in didn’t go overboard with 911-ing her to the ER, but it got to be often enough that I did NOT drop everything to run to her side. I couldn’t. I was a babysitting grandma at that time and couldn’t very well take my grandsons to the ER with me. And, when I did go, I felt like I was in the way. The ER cubicles are small, full of machinery and personnel and she didn’t even know I was there. A few times, I came and then left and she didn’t even know. Her facility transported her to and from, everyone took great care of her and my attendance wasn’t really necessary. Consider, instead of constantly running to her side, having the facility or ER call you with updates. Seriously, your presence will not affect the outcome one way or the other. And, as for the doctor, why in the world would he not approve POA? What’s it to him? I’d be interested to hear his reasoning for refusal. Send him south.
Try for a geriatrician. They tend to be more realistic about elders.
I'm surprised the doctor blames episodes on poor nutrition. Are the snacks she orders high in salt? That is the big bug-a-boo for CHF, I think. Eating vegetables and lean meat would be good for her (in theory) but it won't cure her breathing problems. Let's not blame the victim -- she has enough stress as it is.
My husband had dementia, arterial sclerosis, and CHF. We were given a scale hooked up to the phone line. He was to weigh daily and the results were sent automatically to a nurse. (Big weight fluctuations indicate fluid buildup.) She called me if he didn't weigh for a few days or there was fluctuations. Here is one conversation we had:
N: Coy's weight is up 4 pound from yesterday.
Me: Oh. That was probably the big pickle and the sausage he had yesterday for lunch.
N: (scandalized) A pickle!! Don't you realize how salty those are? And processed meat besides. Don't you understand the diet restrictions?
Me: Coy has Lewy Body Dementia, and that is fatal. My goal is to maintain the best quality of life for him under the circumstances. I watch salt intake for him most of the time at home. He really enjoyed eating in a German restaurant yesterday and I am not going to restrict those kinds of pleasures. It is good to know when his weight increases suddenly and per his doctor he can take a little more diuretic at those times. He is going to die of one of the conditions he has. Meanwhile, he is going to live.
N: I understand your decision.
Ditch Mother's doctor. Keep your job.
How does the ER treat Mom when she goes in with breathing difficulty? Is it something the ALF staff could do?
My caregiving life became less stressful when I accepted that I could not prevent his death, but I could enrich his life.
Usually what happens is as we age we lose our sense of taste except for sweets. That happened to my parents, who were also in their 90's. Most of their grocery shopping was in the cookie and ice aisle.
Can't the Assisted Living offer more food choices that maybe can have some sweet syrup or sweet fruit so that Mom can enjoy the meal?
As for Mom's routine of going to the hospital, just let her go. The hospital has all of her paperwork from the Assisted Living. In fact, some Assisted Livings have a Staff member who would go to the hospital to be with your Mom. Maybe there is an option where you can pay a Staff member to do this.
Now, take a deep breath.
I am very sorry to hear about your struggles with your mom. I know you love her and only want to help her. I know it's a vicious circle.
Given her age and her health condition, I wonder if she just wants what she wants and this gives her a sense of control. I know people want attention and maybe this is her way of getting some.
Have you tried talking to social worker and see what your options are? Are you able to hire a caregiver or nurse to handle any emergency calls during the day while you are at work?
I hope others will be able to give more insight.