My mom was diagnosed about a year ago with PSP. She uses a walker and they installed stairlifts last summer. She is sad, feels trapped, is in denial about the progression of the disorder. She just scheduled knee surgery for this month. I cannot believe the doctor agreed to it. She seems to think that this will make her walking/stability issues disappear. I am trying to be positive with her, but think that this won't do much, other than alleviate her knee pain. Advice?? Also, a deeper question...her voice is getting very weak, some trouble eating. When and how do we (myself and my siblings) ask her what her wishes are, once she can't talk anymore? How do we know if she wants a feeding tube or whatever options are? Has anyone had experience with this situation? Not sure how to go about it with respect to her and without making her feel even more depressed.
Thanks and be well!
Christine
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christie329
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Sorry you are going through this. My dad is in the advanced stages of CBD.
What I would suggest is getting Lasting Powers of Attorney in place. The one in relation to health and welfare has a section regarding life sustaining treatment but you can only make this document whilst someone has capacity to do so so I would get this done asap. The forms are really straight forward and you could probably have a go at them yourself. Just google Office of the Public Guardian. The registration fee is £82 per document. I do know that it is currently taking about 16 weeks for the documents to come back registered for you to to use.
If you don't fancy having a go at this yourself you can go to a private client solicitor but obviously they will charge for this.
Also, my dad has a respect form in place which the District Nurses can go through or GP which is basically a DNR.
Hi Stormtrooper, thanks for your reply. My parents do have a living will, which they both wish for a DNR as well. They had this written prior to my mom's diagnosis. I'm sure we'll have to revisit it. I appreciate your reply and hope that you're dad is hanging in there, as you are too. I'm located in the US, where are you?
I totally agree with Stormtrooper4. I am so sorry Christie329 you are going through this, my mom is almost at late stage CBD/PSP and in the US. What i would add to what Stormtrooper4 said is... make sure your mom is not your dad's POA in any way. We had to take that step FAR later than we should have and it was only after Dad had an accident and realized I had been right all along to beg him to make that change.
My husband attended the local hospice once a week. They provided a service where he filled on a questionnaire about his wishes and we talked it through with the counsellor. We talked freely anyway but it's helpfull having an outsider on charge of the conversation. It was good to have one and later two days when he attended and I got a break. They also gave me respite a couple of times a year. xx
Thank you doglington. I appreciate your reply. Makes sense to have an outside, objective voice. It has been tough on the family being the ones setting "rules" for our mom. Best of luck to you and yours.
I agree with you on the knee surgery, but nothing wrong with alleviating pain......if she is around another few years, then being pain free does have value. There is never a good time to discuss power of attorneys, last wishes, funeral etc but you just have to do it. If she is not responsive, tell her what you will do and illicit a response that way. My dad went to a resthome in June, and the lawyers and co had to sort everything while he was in there including getting a doctors cert that he could sign and understand - so we made it but with some extra administration. About a month and a half ago, I needed him to sign something and he could not. Sort out the paperwork ASAP and best wishes.
Olliefisher, good point on the knee pain for her future. Guess I wasn't thinking of it that way. Thanks for giving me that perspective. Luckily, my parents did write a living will with their final wishes. However, this was prior to my mom's diagnosis. Some things will need to be changed. I agree that this all needs to be discussed and figured out sooner rather than later. I'm sorry about your dad's suffering. I know from reading and communicating with everyone, this is only going to get worse. I appreciate your reply. Best to you and your family.
I’m so sorry to hear about your journey. My wife is now in final stages of PSP. The decision about the feeding tube is difficult. We had the peg fitted about 2 years ago. It has extended her life but now is the only thing keeping her alive. She is immobile, and not able to communicate in any way. She has indicated that she has had enough but with the tube she is force fed and is almost like being in a coma. It will extend her life but think about the quality of the life we are extending.
To answer the question on how you know about feeding tubes and your mums wishes, there is only one way of doing this is the medical professions are not asking. You need to discuss this with your mum whilst she can still speak - I had to do this with my mum wasn’t easy but I needed to know her desires.
I knew the answer I would get and I won’t lie it wasn’t an easy thing for me to bring up but it’s important. Not everyone needs one/ can have one, so approach it has if needed what would you prefer?
Hi Christie329, it's such a difficult situation but I guess asking her asap what her wishes are and getting them written down sounds like the way forward. My mum did say she doesn't want a feeding tube but I think she's changed her mind recently. It's all a constant and ongoing process and checking in with the wishes of the person with PSP is very important.
Start talking now. If you have the option to do a voice capture for later use in a computer program do it. In this country (UK) we have what is known as an Advanced Directive, this is a legal document setting out a patients wishes in terms of what she would like doing when she can no longer speak. Do this with her and a medical professional. So far as the knee surgery is concerned I would ask her what she wants to do given that she will not be able to walk in the near future. Good Luck on your journey through PSP.
Hi Christine, it is a difficult situation and my Mum is still in denial nearly 4 years after diagnosis. As you've suggested, now would be a good time to think about any changes such as PEG feeding. My brother and I gave her warning that we would be talking about end of life/DNAR/PEG so she could think about them. I also said that I knew it would be a hard afternoon talking about these things but once done we wouldn't need to do it again. It was tough a couple of years ago even without lockdown restrictions and it was difficult to keep going through the advance directive questions especially as we could see Mum getting upset and overwhelmed. She also has a habit of getting distracted and not answering questions (even ones like tea or coffee?) but we persevered and Mum then relieved and now it is a huge load off my mind.
Funnily enough, she didn't hesitate to say yes when asked by the neurologist if she would consider donating her brain to research. She liked the idea of being able to help future patients.
I’m so sorry about your Mom. My husband fell and broke his hip and had to have surgery. I think the anesthesia exacerbated his condition and I lost him two months later. I really feel we would have had him with us longer if not for that. I think now would be a good time to discuss her wishes. It helped me that we had discussed these things years prior and had a living will in place. I didn’t have to wrestle with making a decision or feel guilty about the decision that was made. These are just my opinions and I’m sure others might be better able to advise you. I wish you the best.
Hi Cade, I'm so sorry about you losing your husband. I fear that my mom will fall and seriously break something that she will not be able to recover from. She doesn't always use her walker, thinks she's ok without it. My dad tells us she falls quite a bit around the house. Unfortunately, my dad is now exhibiting some falling symptoms. He was told that he most likely has long term covid. He is not eating much, has lost over 30 lbs, and says that he falls sometimes now. Like he feels that his knees just give out. It's been a difficult year for the family, and I worry and know that it's only going to get worse. My prayers are with you. Thanks for sharing your story with me. I appreciate the advice and thoughts. All my best, Christine
As stated in one of the posts above, general anesthesia often makes the PSP much worse so it should be avoided if at all possible. Spinal blocks and twilight sleep like used in Colonoscopies are ok. One post I read said a husband came out of general anesthesia like a two year old and never regained cognitive abilities after that. Also CurePSP.org has wonderful brochures and information you should print out and refer to for handling problems that will come up. Information for patients and families. Sharing this with your Mom might help her understand this disease. I am so sorry your family is on this PSP journey. It is a long, very difficult road. ❤️
In general I agree with what was stated by Stormtrooper, LARWLSN, doglington and OllieFisher1.
Through the internal chat I am sending you information in case you are interested in a record of our experiences during 8.5 years living with PSP. Despite the fact that the disease may have different symptoms and development from one patient to another, there are frequent symptoms that can be addressed taking into account the experiences of other caregivers. In our case, based on the opinion of a physician (GP) and applying the "trial-error" technique, it has led us to practices that have helped us to alleviate symptoms and improve the patient's quality of life.
During the first quarter of the development of the disease, it is common for the patient to rebel against the situation, become depressed and begin to have difficulties sleeping. The adoption of antidepressants and relaxants has given, in our case, good results without appreciable side effects, for 6 years. Ask physician.
You have to take advantage of some moment to be able to have powers in the case of making urgent economic decisions and knowing the wishes of the patient regarding going to a residence at a certain time or installing a PEG, for example.
It is common for the main caregiver to be an elderly person with some chronic illnesses. The task of the main caregiver is hard and demanding. It is not prudent to rule out that the main caregiver may have a disabling episode, at least for a relatively long period.
It is essential that the primary caregiver be able to have frequent "respite" moments and even annual "vacation" times.
A quick word about surgery. General anesthesia and the sustained lowering of body temperature during surgery are known in some significant number of cases to accelerate deterioration of cognitive function in patients with early stage brain disease. I had an elderly cousin who lost all of her functional memory from knee surgery.
When a cancer surgery was proposed for my sweetheart I spoke with the surgeon about it and he agreed to performing with local anesthetic only. It wasn’t knee surgery, of course! I have an 84 year old friend now with early stage Alzheimer’s who has decided against knee surgery because she doesn’t think she has the time to waste on rehab and would rather live with the pain for the time she has, not because she fears mental harm. It’s a matter of choice.
I can understand your mother wanting to be free of the pain, and that may just be the best decision. I think it’s really worth talking to your mother and her doctors about this, at least to see if they can suggest ways to minimize the risk.
If your mum has her voice getting very weak, and some trouble eating, I suggest to get the help of a phonoaudiologist, who could work under the supervision of a psycho-pedagogical specialist. This therapeutic could help in the emission of voice and eating. My sister is 14 years with PSP-Parkinson. A kinesiologist and the phonoaudiologist give a better quality of life.
You have received such great advice below, so nothing more to add at this point; my heart goes out to you on the journey ahead. I cared for my Mom for six years in my home, adding hospice care the last two years. If there is anything I can do -- do not hesitate to asks. ((hugs)) Kim
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