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TCosta Asked April 2022

My mom was diagnosed with PSP in August of 2021. What can I do to keep her safe?

She has to stop working, give up driving, she is supposed to use a walker when walking around her home to help prevent her from falling. She isn't supposed to use stairs. I know that this has been horrible for her to lose her independence & it's been very heart renching for family to watch her dwindle away. However my mom is very stubborn and is refusing to listen to her doctor's orders with using her walker, & not going up or down stairs. I'm having extreme difficulty with getting her to comply with her doctor. Please help me understand what I need to do to keep my mom safe. It seems that I'm the only family member that is trying to stop my mom from using stairs and using her walker. My brother and his family just continue to allow our mom to do what she wants.

Fawnby Apr 2022
Try explaining that she needs a home where there are no stairs. Find some options and present them. Get other family members on board. She should sell or rent her house. This most likely isn’t advice she will follow but you need to try. She is in denial.

Llamalover47 Apr 2022
TCosta: As progressive supranuclear palsy results in the deterioration of brain cells, your dear mother may have lost the reasoning ability. Perhaps your query should be addressed to your mother's physician and specialists. Even if you were to block accessibility to her stairway, if she is that determined, she may breach it.

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TopsailJanet Apr 2022
I don’t know the prognosis for your mom’s condition, but you might consider a stair lift to give her access to both floors. I installed one for my mother. It was from Ameriglide, who cater to DIY, and cost about $2,500.

ConnieCaretaker Apr 2022
Mom is the captain of her own ship! Unless, or until she is diagnosed with Alzheimer's, you cannot do anything to control her. There are consequences for the stubborn patients. I am reminded of one of Dr. Phil's many truisms, "When you choose the behavior, you choose the consequence."

Perhaps when she breaks bones, she will listen to the social worker you arrange for her to go over her options (e.g., nursing home vs Assisted Living).

Love her and let go of her decisions..........you'll both be free of resentments.
venting Apr 2022
“Love her and let go of her decisions..........you'll both be free of resentments.”

It doesn’t quite work like that.

First:
the reality is that the consequences (example broken bone) will very likely fall on OP: emergency/stress/worry. The fallout will land on OP.

Second:
OP cares of course. So even if OP decides, “Mom, do whatever you like”, the reality is that OP will stress/worry/etc.
BeckyT Apr 2022
My Papa had Parkinson’s and he must have fallen 70+ times. He was defiant the entire time, he was going to beat this disease - anyway.

Just a note: This type of patient will still fall even with the walker, because they fall backwards. The walker is in front of them. When they feel the fall start, they startle and grab the front of the walker and it goes down on top of them. Or they will lean on the walker and reach for something and down they over sideways, taking the walker with them.

They call these The Fall Down Diseases. I’m not sure there’s a way to stop the falls. Papa did eventually stop falling, when he got very weak and the walker was essentially holding him up.

This will take a lot to get through, make sure you are taking care of you! You can’t help your Mother if you have are out of fuel.

Dontgetold Apr 2022
I just lost my 82 y.o. mother to PSP in mid Dec. 2021. I am her 55 y.o. daughter. Due to other issues I live with my mom and 85 y.o. dad. My family has many different life experiences and career exposures. Some people are in the medical fields, some are in the financial fields, some are in business (sales), some are in the government fields, and me, I am in the educational arena. We all have different thoughts and opinions when dealing with such life altering diseases of the ones we love. I learned that you do what you believe to be right. Yes, it would be nice to have everyone on the same page but most of the time this is unrealistic. You can only be responsible for the time you are responsible for her welfare. This is a very emotional life event for everyone involved. Unfortunately from the time of diagnosis until death is on average is only 6 years. Put things in 3 buckets: 1)Things that do not put her health in jeopardy and that are silly to argue over for instance clothing, 2) Things that you need to mention like ; I noticed she eats more when I give her Ensure. Or 3) The “no ands or buts” bucket. This is usually due to her really at danger of dying or serious getting hurt. Number three you may need to get her caregivers including doctors. Ask the doctor to sit down with the family to explain the dangers to the family. You can also get an appointment with nurses or social workers or therapists to get involved. Always include your mother (obviously if she can articulate her needs and wants). None of this is easy. There is NO right or wrong answers. Make your moms last days pleasurable as possible. Love her. If it is hard for you most likely it is even harder for her.

JoAnn29 Apr 2022
Unless a someone has Dementia denying that you will fall always gets to me. I can see not wanting to use a walker but me personally, I do not want to fall. I live in a split level, 3 small fights of stairs. I do not wear slip ons anymore. I even have to watch with my sneakers because sometimes the seem to grab. In the house its bare feet or socks. I am so afraid of falling and breaking something.

LisaSF Apr 2022
I'm so sorry you and your family are going through this. I will offer my perspective in case it's helpful. I, too, was extremely worried about Dad not doing what he was supposed to be doing - not using a cane or walker, insisting on driving, etc. What finally helped me was this: The reality was that he was an adult and in denial about his limitations. And as much as I wanted to keep him from getting hurt, the reality was that I couldn't control what would happen to him. That no matter how much I nagged him, something bad was eventually going to happen and I couldn't do anything about it. Once I internalized that, I did what I could (make suggestions, arrange for caregiver, set up his medications, etc.), while keeping our interactions as positive as possible so his later days weren't filled with negativity and I could remember our good relationship. Now, it was not at all perfect. But it was helpful to me to remind myself from time to time. I wish you and your mom peace as you go through this.

TChamp Apr 2022
PSP is a rare neurodegenerative progressive and incurable condition that may resemble Parkinson's but it affects speech and swallowing more rapidly than Parkinson's. Patients have a tendency to fall backward. Obviously, your mother is in denial. That's why she won't cooperate with the doctor. It will take sometime for her to get it. Reality is too harsh for her to face it. You have to be patient.

NYDaughterInLaw Apr 2022
My mother-in-law was diagnosed with a neurodegenerative disorder and continued climbing stairs and furniture surfing for 2+ years until she had a bad fall that resulted in her being unable to walk without a walker.

Remember that it's your mother's illness and she might still be struggling with accepting her diagnosis and prognosis. My MIL joined a support group at the beginning of her illness to talk about her feelings and it helped her.

We also modified things to make my MIL's environment safer i.e. shower chair, grab bars, raised toilet, car entry handle, etc. There are many good catalogs with gadgets to help your mother adapt. We found Gold Violin particularly helpful. Also, there may come a time when gadgets no longer work and your mother needs much more care.

We also learned to pick our battles. For example, on what was our last family vacation to a theme park, we insisted she ride in a wheelchair.
TCosta Apr 2022
Yes this is her illness & I fully understand that I need to pick my battles, but when it comes to her safety & her disregard to her own safety is where I put my foot down. We have implemented all other things you mentioned above to help her, but she still things that she can do all the things that she use to but unfortunately she can't. She hasn't excepted her illness and refuses to talk to a professional about it.
AlvaDeer Apr 2022
I am firstly so very sorry for this diagnosis.
Who does your mother live with, may I ask? Who is responsible for her daily caregiving? Has she had recent falls resulting in injury? There seems to be disagreement between yourself and your "brother and his family" who "allow our Mom to do what she wants. Which of you does she live with, or does she live with neither of you?
TCosta Apr 2022
She lives alone. my dad lives in the basement, they are divorced 30 years.I live about 10 minutes from her & my brother lives about 30 minutes away. My daughter (14) gets on & off the bus at moms & I stop in every day after work to check in on both my parents. She falls daily, luckily she has suffered minor injury's. We are in the process of having a nurse with her to help her with whatever she needs

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