Our medical and social tragedy

Quilting brings calm

Today I got an up close and personal picture of how our medical and social systems fail people. Particularly the elderly, mentally ill and probably dementia patients. We post frequently on this forum that you should send your loved one to the hospital and refuse to take them home because it’s not safe. Well that doesn’t work worth ()$& / at least in the situation I was in today. Granted my friend doesn’t seem to have dementia. But I found out today that she was mentally ill. And I got nowhere with the case manager, PT or OT.

If you read my comment on the compassion fatigue topic, then you know my friend (of 39 years, MOH at my wedding in 1990) has been in the hospital for the last several days. Recovering from the removal of a kidney and a huge mass which is cancerous. She downplayed the surgery beforehand, wouldn’t tell her daughter even as much as she told her close friends, refused to have her come to our state. Today I found out they were going to send her home tomorrow with a needs assistance category. But no PT/OT needed, so no rehab facility eligibility. They wanted someone to spend the first couple nights with her. I tried explaining that her daughter was coming here, but would not spend the night with her and that no one else could. That those of us who have been at the hospital would be out of town. My friend told the case worker she was fully capable of taking care of herself and didn’t need her daughter to stay with her.

Another friend and I went to get her car to bring to the hospital so her daughter would have it tomorrow when she arrived by plane. When we opened her garage, that’s when I found out my close friend was mentally ill. She’s a hoarder. There was one tiny path through the garage to the inside door to the house, which was unlocked. Her daughter gave us permission to enter and asked us to video it, to show to the case manager. The entire downstairs was exactly as you see on hoarder tv episodes. There is no way my friend can come home with a walker because the only path through the rooms isn’t wide enough for someone to walk except for sideways. The door to the outside front of the house is blocked from the inside as that foyer is full.

so we took the videos to the hospital. The case manager was too busy to talk to us… and refused to do so anyway because she had only listed me as contact for the day of surgery… even though I’m the one that’s been at the hospital all week. Even though the daughter had given her permission to talk to us. They refused to keep her at the hospital or to change their minds and send her to rehab. It’s supposedly okay to send a surgical patient with a huge incision home to that environment because that’s where she lived before surgery. Even though her daughter, who was listed as the contact, explained the home situation to the case manager over the phone…. And begged them to send her to a rehab.

So what good is it for us to tell the hospital that our loved one with dementia cannot come home to their empty home because it’s not safe? I’m sure they don’t get any more consideration than my 73 year old friend did today. My insides hurt so badly over this and the fact that I didn’t know. We worked together for decades, and when we saw each other outside of work, it wasn’t at her home … for at least the last 15 years. I know what will happen someday … a fire or a medical crisis and no one will be able to get to her and she will die.

harshedbuzz

QBC-

I am sorry this is happening.

Mental illness brings special challenges that are similar to dementia but don't necessarily infringe on a person's capacity to make their own decisions. It's frustrating, but it's hard to draw a line along the continuum of mental illness-- she can be a hoarder and considered fit to make her own decisions.

It sounds as though this friend either doesn't have a POA or has named her daughter while keeping her daughter at arm's length. If the friend/POA wasn't comfortable going home they could challenge the discharge but it sounds like your friend isn't rational. Unfortunately, her discharge coordinator doesn't have to listen to you or the daughter unless she is POA. I might try contacting your area APS and see if they can assess the situation. If you can't get traction today, call first thing Monday.

HB

M1

qbc, I'm sorry, you've had too much on you. The daughter is likely going to have to handle this. All your stresses are reverberating against each other, I'm sure.

loveskitties

I wish I had some sage advice for you to offer your friend's daughter. I share my experience below:

My father who had Alzheimer's was 96 years old when he had a heart event which landed him in the hospital for a week. Prior to that my mother who was 97 was his caregiver in their home.

When he was admitted he was still able to do most adl's on his own and the rest with minimal help. He was able to walk, feed himself, etc. By the time the hospital decided he was ready for discharge he was bed bound, combative and unable to do much of anything. In this condition, my mother was not going to be able to care for him at home. While I insisted that he could not go home and that we needed more than 24 hours notice that he was being discharged, they insisted Medicare and supplemental insurance would not continue to pay the bill since there was no more they could do for him. If he didn't leave then it would be out of pocket for every day thereafter. The patient advocate was of no help at all.

I ended up filing 2 investigative review requests with Medicare to ask for reconsideration. This bought us enough time to find MC facility. We were fortunate that money for care did not have to be a factor. Five days after the original discharge date we were able to transfer him to MC. He had to be transferred via ambulance. While Medicare did not approve either review, the hospital did not charge for those extra days...don't know if Medicare paid or they just ate the cost.

The entire process was infuriating, scary and unbelievable. Every business day I was on the phone non-stop trying to find a facility which could provide my father the care he needed. (up until this event my mother would not consider placement for him in a care facility).

Having to fight the system while dealing with a massive decline in a loved one's condition is a travesty. We pay and pay into a medical system which is broken. Let's cut the foreign budget and take better care of our own!

jfkoc

While it is true that the case manager cannot give out information she can receive it. Also a good suggestion to do whatever can be done so that your friend does not return home. APS? City to inspect?

It is a terrible situation. Please keep us updated.

Quilting brings calm

Thanks for the support-it really does help. Yes, my reserves were empty before this week started. So between my friend and my parents ( they always require extra attention when I’m doing something else), the red light is flashing internally.

Everyone we did talk to told us we had done everything we could, and it was now up to the daughter. I don’t think she has POA, but she is the official contact on the hospital paperwork. I was the designated contact/companion the day of surgery.

so the daughter and the son are in the same situation as many of us are with our loved ones with dementia: no diagnosis and no cooperation in getting one, long distance, and no real authority. Things will just have to unfold. The daughter realizes that I cannot be involved right now. No reserve energy left on my part. I didn’t even go to the hospital room again once I had pleaded with the staff this last time.

Iris L.

I have quite A LOT I could say about this type of situation, because I have extensive experience. First of all, people like to say our medical system is broken. I don't like to say that, but it is archaic. It was set up for the time when patients had families to return to. But the family support has fractured, and the social arena is limited.

This patient falls into the category of what used to be called a person of "diminished capacity". Apparently the hospital does not recognize her as being of diminished capacity just because she claims she is capable. My city has a program for "hoarders" and that is to refer them to Clutterers Anonymous; which is a program like Alcoholics Anonymous. The attendee must be motivated and capable of following a program. Obviously this is something that will take a lot of time and probably a lot of personal counseling. People like this patient don't like to ask for help or don't know how to ask or are afraid of unseen anxieties.

My aunt was in this situation. She had had a stroke and had poor mobility. Things piled up. Several of us nieces tried to help her. BTW, some people she knew took advantage of her financially, but that's another story. I told her the only strategy that would work would be for her to move into a hotel and have professionals come in and clean out and renovate, just like we see on the TV shows. She refused. Some time later, she was found fallen, was hospitalized and referred to a rehab facility, but expired beforehand.

In retrospect, I see the problem. We were relying on her capability of putting everything into motion. People like her cannot think that far ahead. My aunt was not diagnosed as having dementia, according to my other cousins, but I know she was cognitively impaired. She had a good memory, but she could not think well. This is part of the problem, because they present well to outsiders. But you would think that medical people could observe and make an assessment. In this regard, I agree, yes, the medical system is broken. Also, since she was renting, I believe she feared she would be evicted if the landlord knew the condition of her apartment. So she kept quiet.

QBC, if the daughter asks you what to do, this is what I would suggest. Put mom into a hotel for a few days and have a professional company come in. Depending upon her situation, she may or may not be able to return. But she cannot return there. No home care company will send an employee.

This is why people are warned to prepare Plan B while awaiting for the inevitable crisis. She sounds like she needs to live in a senior apartment. There, they will inspect periodically and avoid the pileup. Also she needs insight into why things pile up. Unfortunately, most professionals are clueless in this area. There are many reasons why things get out of hand. Some of it may be from a OBC type of anxiety, but it could also be due to medical issues, mobility issues, and social isolation. I know all about this. QBC, if you want to know more, PM me.

P.S. My uncle was also like this. He lived in a senior apartment so the clutter was kept under control. He had no dementia. But when he passed away, my other aunts cleaned out his apartment and found thousands of dollars stashed away in cubbyholes. I get the impression that a lot of seniors fall into this situation.

Iris

Quilting brings calm

Iris - she’s a very intelligent woman who retired as a systems analyst a few years ago. She still seems normal, other than she’s a night owl, and is usually obsessed about her health ( except for this serious matter that she should have been obsessed about). I’m sure the hospital staff found her to be perfectly normal and capable. Even though I had already told them she wasn’t being realistic about recovering from this major surgery. I thought she was normal and I know her well. I didn’t find out about the hoarding until yesterday. I gather her son and daughter were aware, but hadn’t been there for several years. It’s probably worse than they had seen it. It doesn’t help that her daughter didn’t know she even needed to come here until Wednesday night and thought Mom would still be in the hospital after she arrived.

I think what I was most upset about with the hospital staff was that I was telling them and they were doing nothing. I thought they were the appropriate people to tell. Seems like if they weren’t the appropriate people to tell, they should be telling you the people to call

Iris L.

QBC, you and I are in the same boat here. I'm trying to help my neighbor as a friend, not as POA. It's a challenge! We have to stay strong and focused and not let ourselves get overwhelmed.

Iris

jfkoc

Hats off to all of you who go the extra mile!