Are we approaching end of life?

[Cbui]

My mom was diagnosed with PSP in late 2013 at the age of 58. Over the years she progressed through different stages from walking imbalance, to walker, to wheel chair and finally bedbound this summer of 2022. We’re in the US.

She recently went to the hospital for a decubitus ulcer that got infected. She got IV antibiotics, surgical debridement and was diagnosed with stage 4 ulcer. She was placed into a SNF and within two weeks she got COVID at the middle of December.

For the past two weeks, my moms oral intake is much weaker. Losing the ability to suck up liquids with a straw, can barely open her mouth, loss the ability to each meaningful quantities of puréed foods. Over the past two weeks, anything she ate she’d cough, anytime we’d give her liquids she’d cough. The doctors indicated that she is aspirating and at high risk for an aspiration event like pneumonia or pneumonitis. ,Right now, she can’t swallow any fluids barely, and anything that does go down results in coughing. Anything we spoon in goes out of her mouth.

She’s withdrawn for parts of the day, can’t talk, laying peacefully. Eyes open sometimes, can blink when asked to blink to signify yes.

My questions are ….

has anyone experienced this big dip after an infection. Her neurologist indicated that PSP patients do get “hit hard” when there are infections. They experience more weakness and it knocks them off their feet

how long can she last with poor oral intake? She is Very poor… was this the end for your loved ones? What did you experience in this end stage and any words of wisdom?

did you opt for IV fluids? Hospice suggested no because of various risks versus benefits.

Thank you to this community. I’ve read for years and this is my first time pairing and asking for advice.

[Stephanielayell82]

Sorry your family has been dealing with this wicked disease. My loved one hasn't been able to drink from cup or straw since 2018. We ordered a battery operated cup called drink EZ where it pulls the fluid for her. We've also been feeding her with medical syringes. Our speech therapist told us to put honey in her drinks to coat her throat works sometimes. My loved one has been coughing, choking and sneezing everytime we feed her. But her lungs remain clear even though she is asperating. Our hospice offered a suction machine to help clear her out. As far as IV fluids it comes down to if your mother wants to continue the daily struggles. The one thing I talked to my loved one about is how it wouldn't make the disease not progress so the longer you hold on the more problems you will have to face. As she is very angry about the whole thing and what it has taken from her. She is been 100% assist over a year now. She can do absolutely nothing for herself. Also PEG tube or IV fluid will not eliminate asperating so it will come down to what your mother is wanting. Best wishes!

[Cbui in reply to Stephanielayell82]

Thank you so much for the message, Stephanie

[WifeLilyRose]

I’m so sorry to hear how your mum now is but it sounds very much that she is at the End of Life stage and needs good palliative care and no interventions. You don’t say where your mum is being looked after and whether you ever had “ the conversation “ in the past about her final wishes re. intervention, place of death etc.

My husband probably had PSP for at least 7 / 8 years before he died in August. I had to insist that I wanted to know when he was in his last week /s and it was a relief to me when all his meds were stopped and then days after, he became completely unable to swallow ( and therefore not able to eat and drink. ) He had never wanted a PEG fitted and was nursed at home by myself and carers with love and dignity right up until the day before he died when I transferred him to the wonderful local hospice, where I could totally focus on being his wife again i / o being his full time carer. He died the next afternoon very peacefully on no pain relief with myself and our daughter by his side.

I had it explained to me during that last 10 days how the body slowly shuts down and he would not be suffering hunger or thirst…a point that had been really worrying me. He had suffered chest infections, aspiration and urine infections almost consistently since early June.

The important focus now is only to be next to your mum as much as possible, talking to her, holding her hand, telling her you love her etc.

It is said that one’s hearing is the last sense to be lost and I was very aware of that.

Take good care of yourself. I really hope my message has been helpful.

Susanne xx

[Cbui in reply to WifeLilyRose]

Hi Susanne - thank you so much for your message. It was really helpful, for me the idea of my mom starving equates to suffering for us. So much of my life, part of "love" in our family including getting fed. "I love you therefore, I feed you".

-Christine

[easterncedar in reply to Cbui]

About feeding: Hospice nurse told me that it’s a common source of pain for the family, when our desire to care comes down to that one essential element, feeding, and we can’t provide that. All our lives, that’s how we care and are cared for. When someone is dying, the digestive system shuts down, though, and introducing food and even water, I was told, can cause suffering. My partner decided to die by refusing food and water. It was very hard to watch, but he did not seem to be in great discomfort.

[Cbui in reply to easterncedar]

hi - thank you so much for that insight. Hospice is telling us not to force feed and cautioning us the same. It is so hard to sit by and be with my mom and do what feels like is nothing. I am trying to not force feed and my aunt is telling me my mom is even refusing her favorite food - durian and very sleepy.

With the slowness, inability to open her mouth much, and apathy from her disease progression, I find it hard to know if she’s refusing or just slow to respond …. how did you know your husband was refusing. Were there any cues?

🙏🏻 thank you!

[easterncedar in reply to Cbui]

He firmly closed his mouth and looked me in the eye. He wasn’t speaking much at this point but I knew that he had made a decision. He allowed me to give him a little morphine only after I explained it wasn’t water or anything that would nourish him. He never wavered.

[Purrlie]

So very sorry that your Mom and your family are experiencing this. My husband and I had often discussed what we would want done--or not--should either one of us be incapacitated as your Mom is now. Those talks helped me and our son to accept that in his end of days (he experienced a seizure that started his final, rapid decline) "comfort care" (medications to dry up the excess phlegm and saliva that caused such horrible coughing and choking, antianxiety meds, and pain relief) was the best care for him. It was clear to us that any other kind of intervention (a PEG, IV fluids, etc.) would only prolong matters, certainly not making him better, not even making him more comfortable. We were able to be at his side for the three days he stayed with us, and it was a peaceful and loving time for us all, despite the tears, before his gentle release and relief from the suffering that PSP brings.

I hope describing our experience is helpful to you in some way. Sending hugs,

Purrlie

[Cbui in reply to Purrlie]

Thank you for your response Purrlie!!

[LuisRodicioRodicio]

Hi Cbui!

I send you our experiences on the final stage of the disease by the private mail of this chat.

The comments of WifeLilyRose and Purrlie are in line with our experiences.

I write down in this chat our informations and experiences regarding food in the last months of the disease:

In advanced stages of the disease, feeding the patient is a big problem. The patient is so bent forward and cannot tip his head back or move it, so feeding is now very difficult

Our solution (which often works but sometimes does not) is as follows:

1) With the fiber-free part of the head of an electric toothbrush, we massage the outside of the jaw and the inside of the mouth to stimulate the muscles that open the mouth. Also, before feeding the patient, give a circular finger massage for 1 minute just at the top of the jaw and under the ears, she can move her jaw better.

2) Place a big napkin under the chin.

3) With the caregiver's left hand, the head is raised and with the right hand the spoon is inserted into the mouth and it is removed empty.

4) The head returns to the position where the chin is close to the chest (in this position it is easier to swallow) so that patient can swallow better.

5) Steps 3 and 4 are repeated as many times as necessary.

6) When feeding with a small spoon is very slow and difficult, we have used a 60 ml syringe, introducing the pureed food between the teeth and the cheek in small doses (10 ml each time).

It is normal for the napkin to get very dirty.

Note.- On the advanced phase in which we are, the patient tends to be frequently drowsy. If he is very sleepy it is useless to feed him. It is preferable that you take something the patient like very much (An ice cream for instance) to entertain the stomach and not force feed. This happens especially at dinner and in the morning our patient eat breakfast very well (generally the easiest and fastest meal of the day). Lunch is usually quite acceptable too.

Feeding thier loved ones they they sometimes will cough, sneeze and nose starts running, despite feeding with puree and using a syringe.

Dance 1955 and David 750 suggest the use of an atropine solution that is used as eye drops in ophthalmology. These drops are applied under the tongue of the patient about 15/45 mins before food helps with the secretions.

Hug, luck and courage.

Luis

[Zerachiel]

Hi, my wife's PSP has mostly affected her speech, swallowing and eyelid control; we are only 3 years on from first hospital visit as her speech was quiet.In September we went on holiday, at that time she could eat solid food although with a lot of effort; we caught covid whilst there and instantly lost the ability to manoeuvre the food in her mouth or swallow solids. Three months later she is reliant on liquid food and can sometimes manage pureed food.

[Cbui in reply to Zerachiel]

Sigh, I am sorry to hear about your wife's situation and what happened post Covid. Wishing you all the best as well. Thank you for sharing