Hello to all!! What a horrible thing we are faced with watching our loved ones battling this disease. My loved one for about a couple of months now mentions how tired she is I've explained that is normal. But yesterday I was with her and upon going in she mentioned that her dentist wants her to travel 3 hours from home to see a dentist that would be able to help her with dental problems. The body is taking nutrients from her teeth which is normal because of the lack of food intake. I tried explaining to her this was the natural process of the circle of life she got angry and said you just want me to lay down as die. I quickly reminded her that is not true. She is to fraile for a trip like that to fight something that's not reversed. So I told her that her dentist should of been honest that your teeth are bones and they breakdown too. She is having hallucinations for sometime now but she won't believe me so I guess I will record it to show her. Does anyone else have a problem with doctors not advising their loved one properly?
Hard decisions : Hello to all!! What a... - PSP Association
Hard decisions
Most doctors we’ve worked with are reasonable, unless they see a lab test such as MRI or DatScan is necessary to compare histories. Multiple of them seen a nerve testing may help to determine the diagnosis but they all said it won’t change the management plan at all, thus not necessarily to put her through it.
With dental issues, not sure how advanced your loved one is in this journey, I don’t see they can safely perform any procedure if they have severe swallowing issue and lacking overall muscle control of lips, tongue, closing and opening of the mouth. I personally wouldn’t do it unless they are in pain. But if you think it’s doable, try to finish what’s needed early, because unfortunately it only gets harder from here.
Thank you we are 6 years in with the disease. I don't think it will be possible with her condition. Hopefully she will start seeing how hard it is to keep some of these things. But she is eager to beat it.
And I don’t blame her for that, I understand the struggle, the frustration, and the determination in and out. As a caretaker though, I found that reasoning with my mom over unreasonable demands is not getting us anywhere. That only triggers her into thinking I’m treating her like a child or accusing me of saying she is lying. The easiest way for me now is just calmly accept her request, say ok or yes I will get to it, then make sure she is safe then just walk away for a bit.
Sometimes it helps to calm her down, sometimes she fights for it to be done. But I learned you can’t attend to every single need.
Hi Stephanielayell82!These are our experiences:
We not detected major episodes of tooth decay, muscle cramps or spams. In the daily diet we include in the breakfast a quantity of fresh cheese and in the meals egg yolk or fatty fish. And just as important as the incorporation of these kind of foods, whenever the circumstances arise we expose the patient to the sun discovering legs and arms. The idea is to favor the presence of Calcium in the diet as well as favor the activity of vitamin D.
Hug and luck.
Luis
Thank you!!
HelloWe are in Australia.
We have had trouble with the doctors telling us anything. Most of the health workers here do not know anything or very little about the PSP disease.
Our family has learnt so much from this site and from the PSP website.
We are in the country........
Mum is in her last days. She is on morphine and oxygen. Nurse asked us to turn oxygen off last night to put her at rest. Doctor disagreed with this action.
We are now day eight no food or liquid.
The emotions come and go in waves.
She is still blinking to me in response to answers.
It’s a bugger of a thing this.
Thanks for listening. Xxxx
The choice to turn off is not the doctor's. You will know when. We just went through this. My husband went 10 days until he took his last breath. His comfort was the most important issue. Morphine was a God send. It allowed him to ease out. I send my peace and prayers for you also. A bit of a rough road ahead.
Thanks uscarolWhen did you know to turn off the oxygen.
Mums tummy is rumbling, it’s so hard to listen to. The unknown is so hard to deal with.
Thanks for your reply. X
Is she struggling? You may need to up her morphine, especially when turning off oxygen. Everyone is different. He (my husband) had a plan. No more food and water. Morphine for the discomfort. We needed to increase the morphine toward the end. If she can communicate, ask her if she needs more morphine and accommodate her. Blessings.
Thank you. Best wishes to you and your family in these hard times.
A big hug.Luis
Thanks Luis. All of your posts and info have been very helpful.
We live in country Victoria Australia.
Very little is known about PSP here, in fact we provide a lot of the information needed to Mums carers. I have been so thankful that we found this sight and all the info we have read, which has help our beautiful mum.
Luis take care the journey is a hard one. X
Yes, we had trouble with specialists who just saw their single issue and couldn't treat the whole patient. I had to decide to what extent we were dealing with non-threatening cancers, for instance, and went for the options that didn't require general anesthesia. Luckily, the specialist eventually came to understand, and we had a few minor procedures in his office instead of the major surgery that would have been traumatic, dangerous and ultimately unhelpful. I stopped our trips to the distant neurologist, who was merely documenting the decline. The eye doctor was the worst, because she kept making out new, expensive and utterly useless prescriptions, which my sweetheart wanted, as he was so frightened at his fading ability to process the visual field. No lenses were going to fix that, but the doctor wouldn't acknowledge it. So we filled them, and we had to deal with the inevitable crushing disappointment.
This is all to say that I understand. You are in a hard place! I think you're right not to want to make the long trip to the dentist. However, there are commercial rinses that suggest they can help restore tooth enamel. I am not saying they help, but perhaps you could offer something like that as a palliative. (Could her dentist be brought on board with that?)
I'm not sure how much good it would do to show her that she is having hallucinations - could she process and retain that information? This disease affects everyone so differently, it's hard to generalize, but my sweetheart for the last 3 years flickered quite a bit from confusion to his usual brilliance, to knowing where he was to being utterly lost, all very unexpectedly. He never really processed it. His short term memory, though, was very much affected.
If you do show her, I would be interested to know her response.
I do wish you the best that can be as you travel this road. Your loved one is lucky to have you. Take care. Ec
I see it more as my mother not being reasonable - not accepting the terminal nature of things - she hears what she wants and a doctors appointment means something to be fixed/corrected etc. IOW, signs of “living”. Most doctors seem to be in rote modes - as in, “follow-up appointment in six weeks”without any consideration for the feasibility or even need for the appointment from the patient’s perspective. Certainly mom isn’t going to question the reasonableness of it, after all, it’s evidence that there is still ‘time’. My mother is also in a rote mode, not being able to adjust to the changes re: her health care, with the need for some new things (which she vehemently objects too including new medications and hospice - things she equates with dying) and dropping off of other things, like dental or reading glasses, etc. . As it is, she can barely swallow at this point - so outside of any pain issue, there is no longer a need for tooth/teeth care.
Not totally related, but along the lines of hearing what she wants to hear, I remember one time (5 years ago now) a mutual Dr of ours mentioned to me having a talk with my mom about her need for help with hygiene and wanted me to know what she planned to discuss. (This was before anyone was helping her with care). When I circled back and asked mom what she and the Dr. discussed, she told me the Dr. wanted her to go on vacation! (No mention of needing care!). So maybe it’s just a way of holding onto whatever dignity there is to be had - real or imagined - in this otherwise dignity robbing disease.
At the beginning of my husband’s diagnosis, his GP and I had a bit of a disagreement. The clinic had fixed me up with a social worker so I called her and asked her if the Dr and I might not be on the same page.. she took a long pause and said “yes” but don’t tell her I told you that. By oath Dr’s will always try to fix it.. your goal will be always be his quality of life. She said trust your guts.. you know better than anyone. From then on that is how I functioned. We went to the dr 2 more times after that and then it became too stressful for him and me so we stopped. Sometimes, I just had to tell him.. I am not talking about that anymore. He would just get stuck on stuff and not want to stop. I just had to draw a line.
Thank you for sharing your story. Yes and get fixated on things that can't be answered it's very difficult. I've told her we never know our expiration date so live each day to be happy. But they only thing that she finds enjoyable is shopping. And that is very difficult to do but I take her as much as possible. But she refuses to admit with her deteration things are getting harder to accomplish. I just pray about it.
Valentines Day and more seizures
Mum grew her angel wings 
Love and tender touch is important. 
Nil per mouth
worst night ever
