Sorry this post is so long. I just found this website and could really use some advice about what to do. Here is the situation:
Almost a year ago, mom was moved kind of suddenly to a skilled nursing facility because my family could not longer afford to care for her at home, and our house was foreclosed and auctioned. Things were not great with the first skilled nursing facility, and we had her on the waiting list for a better nursing home (for over 8 months now!). We decided in consultation with the first nursing home that she just needed more one-on-one care, since her symptoms are so unpredictable. We tried moving her to a group home type setting with 24 hour care, and that was immediately a disaster. She was asked to leave because her care needs were too much, as were her unpredictable symptoms. She was taken to the hospital, and has been there for over a week waiting to be discharged to a nursing home. None of the nursing home in the area will take her now because she has "behavioral issues" -- most of which are related to her having really unpredictable symptoms, I think. I'm not really sure what is meant by the behavioral issues so I asked the doctor at the hospital about it, and she basically said that my mom seems to be okay when no one is in the room, and then becomes rigid and stiff when they are there, and unable to move. The implication was that she is not really physically sick with the parkinson's-like symptoms, and that this is psychological. She has been diagnosed with the PD / parkinson's like symptoms (doctors disagree on which she has) for 15 years! And now they are acting like she has all these behavioral problems. This is not what my family has observed with her, her symptoms come on suddenly and randomly, and she has a lot of pain. When I brought this up with the hospital doctor, she said that they had to go based on what THEY had observed. I know there is probably a grain of truth to the behavior thing -- but that has NOT the main issue with her care by a long shot.
The situation is making me physically sick to deal with. I am a grad student living on the other side of the country, but I have been able to come here briefly have been visiting my mom the last few days in the hospital. My dad has been with her as well, but he is not very good at communicating with doctors and social workers. The hospital has recommended that we take her home, but I have repeatedly explained to them that there is no home left that we could take her to. Even if we could cram her into the trailer where my dad lives or my sister's studio apartment, it would be an immediate problem because she does need a very high level of care at this point.
I don't know what to do about this situation, and I don't know what to do to take care of myself, I feel like I have rally lost the ability to do that over the last week. I have to go back to work/school in mid-January, and I was also planning to be with my boyfriend in a few days. My mom says I should still go to be with my boyfriend -- I can come back after Christmas -- but I am getting terrified that the hospital is going to kick her out with nowhere to go. They are obviously angry that she is there in the first place, and the nurse is not being very understanding about her condition, and keeps putting her positions that cause her a lot of back pain. It is really starting to traumatize me. This last year has been awful for me and my family, and at this point I feel nauseous all the time. I want to just go see my boyfriend and hope that things are better when I come back, or at least try to get myself together a little more. My sisters are both married and both live in the area. But they have been less involved recently -- my younger sister is taking care of her newborn baby; my older sister is just really struggling with the stress of all this and isn't willing to be too involved anymore. For the last year, literally every day has been an emergency with mom's living situation or care. It just seems to take so much effort to get anyone to understand mom's condition, and I don't know if ANY of us can handle it anymore. We are all pretty young (mom is only 56), and I think that has been an extra issue.
Let the discharge planner know that you will be watching this very carefully and remind her about the ugly news coverage when hospitals try to dump patients.....do it sweetly while asking her help. Other than that unless you can actually be there, it seems that you will be spending alot of time on the phone this Christmas. I think that regardless of how stressful it is, the situation you are describing is serious enough where you and your family will have to temporarily buck up and find someone to advocate for you. The consequences of not doing it sound pretty harsh for your mom and probably your dad too. Start with calling the Parkinsons organization and speaking to someone who might be able to give you contacts and suggestions - you might also because your mom is younger call what ever service agency (Medicaid?) is handling payment for her care and enlist them - if she has social security disability then call them too.
Just remember that you have to take action to get to a space where you can relax. If you & the family give up temporarily, you will lose ground and it will impact both your parents.
Hope I am not out of line saying this, but if your boyfriend can support you through this he is a keeper - if he makes you choose between him & doing right by your family then you have a glimpse into your future that might not be what you had envisioned. Hope he is a stand up guy and helps you!
First of all, go on this mini vacation. Step back from the situation and take a breather so maybe you can see things a little clearer. Call your local office of aging and adult services. They have an abundance of resources at their fingertips, from nursing homes to medicaid information to emergency food sources. They could also help in finding temporary placement until something else comes along.
If your mother has behavioral problems in the facility she's in now, but not at home, that says something about your moms frame of mind and the care of the facility. She's uncomfortable you already said because her back hurts. That's a key to mind setting. I know your sisters have their own issues, but try to talk to them about all of you taking shifts where mom is at. Be apart of her care! If mom has someone there who understands her, maybe the staff will see it isn't HER behavioral problem but theirs!!
Call your moms health care provider and see if there is a specialist that could be brought in. You need to know exactly what it is you're dealing with.
With all of us there, I called the social worker at the hospital who is in charge of discharge planning. She told me that we DO have to accept the first placement the find for mom, but that they will NOT kick her out on the street just because she doesn't need hospital care. They have to send her to a place that will be able to take care of her, and that's why it's taking so long -- because most places don't want to deal with the "behavioral issues." I asked the social worker how wide the radius was that they could force us to send her, and she said that she didn't know but that she would find out. We are hoping it is limited to the county and not anywhere in the state, since this is not a small state and a distant placement would really limit our ability to see her and help with her care.
Then my sister came with me and we talked to one of the nurses about the behavioral issues, and tried to get an idea of what they mean by that and why they are expecting her to do so many things that she can't physically do. I thought that we did understand each other pretty well, and agreed in the end that there might be unresolved issues with her physical pain and symptoms, and maybe with her behavior too. The nurse said that the behavior issues were mostly asking for an unrealistic amount of help, like asking time be repositioned many times or to have pain cream rubbed on her often, stuff like that. It is more requests for care than they can really handle. I told them I understood how it can really be a drain to take care of all the things mom needs when she is in an off period and in pain. I guess I just never thought this counted as a behavioral issue, but I can see now that this is the terminology that the social workers and the doctors are using for when someone is asking for help but it doesn't seem totally necessary. The nurse said she could look into having a psychological consult done.
The doctor was not there at the time, but when I talked to the doctor yesterday it went pretty badly so it might be better than I talked to the nurse today instead. She also said she would talk to the hospital staff about trying to force her to do things that are painful or that she can't do. I'm not sure if that will have an effect, since the doctor and the day time nurse did not offer to do this, but at least it was nice that she was willing to look at things from our perspective too. I think part of it is that in the hospital, they are used to making people do things even if they are painful, as part of their recovery from surgery or whatever -- but this situation is different, because she just needs long term care. I still think that they are making problems that are actually physical (like not being able to move) into problems that are psychological (like being unwilling to move). The nurse in the end said she did understand that mom sometimes actually can't move, so in the end I felt like that was a victory, considering how badly things have been going.
We have called but have not heard back from mom's state social worker about this situation, but the discharge coordinator said that she was in contact with another, higher level social worker from the state. I feel a little better about the situation now, I am pretty sure that they will not kick her out on the street (although it is still a fear that I have in the back of my mind). It will be bad if they discharge her to a place that is very far away or that can't take care of her in the long term, but we will have to find a way to make it work.
I was upset before about her being sent so far away, but now I am really hoping that they discharge her there soon. The doctors and nurses in the hospital are still not taking her muscle spasms and neurological issues very seriously, and when she is in pain and asks to be repositioned, or tries to ask for other help, many of the staff still tell her no. They say that she can do those things herself, because when she is having an "on" period, she can. It frustrating to see medical professionals treat her this way. I know that they can't always do everything she asks, and that sometimes she will have to be in pain because there may not be anything they can do -- but it breaks my heart to see them tell her that she could move around herself if she wanted, when her muscles are totally rigid and she has trouble even opening her eyes. I have given up on them, because they are not willing to listen to my family or my mom about her condition, or to do anything else to treat her symptoms. Someone from my family has been there everyday with her since she has been in the hospital, and we have tried to talking to the staff members about this multiple times. Talking to the doctors and nurses in the hospital has NOT helped, and they are extremely defensive when we bring up these issues. At this point the doctors will not visit her even if she requests it, because I guess they are treating her as being there for non-medical reasons. Which makes sense, but we can't take her to another doctor until she is outpatient again. I am praying that the new nursing home staff will be more understanding about her neurological condition and at least acknowledge her physical inability to move sometimes.
Stiff-man Syndrome is a rare disease of severe progressive muscle stiffness of the spine and lower extremities with superimposed muscle spasms triggered by external stimuli or emotional stress. Typically symptoms begin between the age of 30 and 50 and respond to benzodiazepines. EMG shows a characteristic abnormality and anti-GAD (glutamic acid decarboxylase) antibodies, which are very specific, are present in 60% of people with the disease.
Key words: Stiff Person Syndrome, Moersch and Woltman Syndrome, Anti-GAD antibody, Stiff man syndrome
she lost her bed at the place she was staying and had to stay in a local hospital for six months. she is now in another town that is about a 20 minute drive I pray it all works out for your family
Thanks for thinking of us. Do you know if medicaid paid for your mom to stay in the hospital? I'm asking because the health insurance company is going to stop paying for her hospital stay at that time, and the discharge coordinator (who works for the health insurance company) is now saying to my family that we should find a place to take her so she doesn't end up in the homeless shelter. It seems like since she is on medicaid which paid for the nursing home, maybe that should pay for the hospital stay until she is placed?
Sometimes nursing homes will take a resident "Medicaid Pending." If you haven't already, please explore that option.
It is very kind of you to be looking after your brother's interests. Don't let anybody guilt you into taking on more than you can. You are doing your best. Good for you!
Thunderup, if anyone has been so rash or indiscreet as to make these comments on the record or in writing, what about naming and shaming the unit concerned? I know we live in straitened economic times, but I'm pretty sure that in any state there are going to be laws about this kind of thing, no?
I may be in this position someday with my dad so I'm very interested