Thank you Ed and Robin for your replies and support.
To answer Ed's questions:
1. My mom lives in a residence for the elderly, in the autonomous section (which is most of the residence, but there are a few medical unit and nurses on call 24/7 available to everyone). She lives alone. She has an emergency call button on her wrist (which calls me).
2. I am her primary caregiver (and almost the only one). She can receive some help through the residence services too. For now she does not require much care. I organize all the medical appointments, drive her there, ensures the communication between doctors... I help her with what she can't do (washing dishes, clothes, running errands, etc...), but it's not on a daily basis. There are a few "shops" in the residence as well, so she goes to the hairdresser to get her hair washed for instance.
3. (a) She has swallowing problems. She worked with an orthophonist and she improved, but she still frequently clears her throat and she has to pay attention to what she does when she eats/drinks. She lost weight and she is taking some supplements now. I am monitoring her weight. (b) She feeds herself, the meals are provided by the residence, they're not specifically adapted to her (but there's nothing hard to swallow). (c) She is mobile. She is slow but she has been doing physiotherapy for the past year. If she makes an effort, she can do a lot of movements; but she won't naturally do them other than for a doctor's test for instance. She is not assisted. She uses a heavy-duty walker. (d) She bathes herself when she feels she has enough energy (so, not every day). There are bars to hold on everywhere. (e) She is not incontinent. (She wears a light protection for effort/coughing). (f) She has double vision, prisms, and she still complains her vision is blurred, problems with eye movements (looking up is hard,, especially since she is hunched over by arthrosis), light sensitivity. Her speech is affected along with her swallowing. Her speech is slurred (more or less depending on time of day) and her voice is low. (g) Her thinking is slower but I think that's all. Sometimes she's quite sharp. Sometimes she says the wrong word or name, or I have to repeat things, but not much, so there's no obvious problem to me. She takes her medicine herself (from a pill dispenser).
4. She's alone all the time (at minimum, I do call her several times a day to check on her)... but she is still quite capable, though I would say she is on the verge of requiring assistance for clothing, bathing, and maybe surveillance while eating. Even if I moved her to the medical units of the residence (which I am considering but cannot do without her consent), she would still be alone most of the day.
5. There is no clear cause to the injury (she gradually could not walk anymore and was in a lot of pain, but we cannot pinpoint one event that caused this). It was probably a combination of osteoporosis and repeated falls. Then after re-adaptation and physiotherapy she stopped falling, and now she started again.
I will add that she does not want/like outside help (except from me), and since she has no cognitive problem, I can't go against her will. I do think she could use more help, and it would make her safer, but I have to work to convince her.
To answer Robin's questions:
We live in Canada (in Quebec).
1. We changed doctors when it was really critical, but it's not an easy thing to do. I don't think our current doctors are bad actually, they take their time with us which is a good quality nowadays, but they're not easy to reach outside of our appointments, and I do get the impression they could try a little harder. Or they could explain why they are reluctant to do more. I do know she already takes tons of medicine. I agree that not having a good description of the symptoms doesn't help. I keep asking questions, I printed questionnaires on pain, but it's like no word sounds right to her, and she's loosing interest.
2. I asked several times about pain specialists, but all I was recommended is physiotherapy. I'll try again. Her mother had restless leg syndrome, and I think she has it as well.
3. We have up-coming appointments with her doctors in July, so I certainly want to explain her anxiety to them. She has seen a psychologist in the past, but I don't think it can help her much now (the patient has to want to change). I do make her aware that she is anxious when she is, and she works on calming herself down.
4. I did a search on Rivotril in the forum, and only got a couple of posts, whereas Ativan will bring hundreds, hence my impression that it was not the most common. For the anti-depressant, I read something in the forum about the tricyclic anti-depressant helping with PSP symptoms? but that was an older post. Effexor is not tricylcic.
5. I will discuss meds for sleeping with her doctors. What do you mean by good sleep hygiene? Same as for my kids: no light in the room, regular hours, no excitement before bed time?
6. I do think the exercises were too much, so we slowed down. But I'm afraid if she stops altogether, she's going to loose quickly whatever autonomy she has left. The specialist in movement disorders who made the PSP diagnosis recommended exercise (note: he is not following her, it was a one-time appointment). Also, I have to clarify that by "exercise", I don't necessarily mean much. My mother does not participate in any social activity. She eats most of her meals in her room. I have to insist that she gets out of her room every day. I just want to keep her moving other than going in circles in her room. I wish she could meet people more often. There are plenty of people and activities in her residence. I don't think it's good for her to spend her days thinking how uncomfortable she is.
It's very hard to tell, but I think her mood has a great influence on how she feels, and she seems to me like she is stuck in a vicious circle. By my answers, you can tell she has potential to still do and enjoy some things, but she's not doing anything. I know she does not feel well, I want to be understanding, I cannot imagine how she feels. But I see she could do things, and she doesn't; and in a while she won't have that opportunity anymore, even if she wanted to. If she were happy as she is, I would not try to push in another direction, but she's not.