My heart is breaking tonight -- Mom has lost so much weight, and her swallow has diminished so very much. I can hardly get anything down. This time last week, she was having her strongest swallow in the morning, and then it would slow down through the day resulting in smoothies. The last 3 days, I can hardly get anything down. My heart is shredding a little every day. I am at a loss, as to what else to do .... Did you guys experience this?
Slow swallow ... worse every day - PSP Association
My heart and prayers go out to you lovely lady. I know how that feels. AliBee
Oh Kim, I am so sorry you have reached this point! But how wonderful that your mum is still here after 4 months or more of swallowing difficulty. That must be all down to your care and dedication, and empathy with your lovely mum.
I have been thinking of you both over the past few days, wondering how you are getting on. I can offer little help, other than thoughts and prayers for you both.
It must be close to the time when you both need to gather your strength and prepare for the inevitable. Your patience and gentleness is helping her not to choke, but it is likely to happen soon.
If you have not done so, maybe talk to an end of life care nurse/doctor so that you both know what to look out for and you have someone to call for assistance when the time comes.
Be at Peace you Two Great Warriors. Kia kaha! Stay strong!
Big hugs to you both.
Jen XXX XXX
Hi Jen -- we are still pushing through each day. Momma has lost so much weight -- its incredibly sad. I haven't been able to get on here to respond; something has happened to the app on my phone, so I have had to get on her via my computer. I appreciate you so much -- thank you for always having kind words for me. I will keep you posted. She is eating very little each day. Prayers are appreciated. xoxo - Kim
I am sorry to hear of your mother’s progession to this serious phase. We are where you were last week. A few weeks ago switched from using a food processor to mince food and occasional smoothies, to exclusively using a blender for full purees and more finely blended smoothies. Difficult to balance an urge as a caregiver to maintain nutrition and hydration with not wanting meals to become an ordeal and torture for my mother. Also, she never wanted to linger, and that was not even imagining her current state of not being able to move or communicate or express pain. But still, food is very central to the way we express love, and it is hard to resist pushing sustenance. We are not quite at the transition to ‘comfort feeding’ and possibly no feeding, but I know that is just around the corner.
With blended soups and some smoothies, if they are a bit particulate, adding a bit of xanthan gum-based thickener seems to ‘gel’ it a bit and reduce coughing.
How does she communicate now? Do you understand what she wants?
No communication is possible from her. No hand movements she can control, no eyeblink control, plus there was yes-no confusion when those did work. No facial expression changes other than a rare difficult smile or chuckling at jokes. No way to assess pain, hunger, thirst, itching, cold/hot. No negative expressions either—no crying, wailing, or tears. She does start increasing movements in general (arms and legs moving) when she wants to get out of bed in the morning. That’s about it.
How difficult for you! As the patient I’m frightened by those symptoms, To be locked in my body. And I can’t imagine being my daughter who keeps an eye on me and is watching all this.
The changes I’ve seen recently (harder time eating/drinking, forgetting words, opening a new window on my computer and having no idea what I wanted to search for EVERY time, watching my temper go off, saying things that aren’t things I would have said before all this, just spending time drifting in my mind) are frightening.
I can tell you as the patient I’m still in here but I’m starting to fade. I can still talk and sing in my head. It’s when I try to talk or sing aloud that my throat muscles just lock up.
I dream of walking. It’s tough when I wake up and realize I can’t.I dreamed of falling the other night and just sprang up in the dream, then I was just so disappointed upon awakening that I couldn’t actually do it.
I’m tired of choking on my favorite foods and can’t imagine eating puréed food. My choking has gotten worse and sometimes I just can’t catch my breath for a few very long seconds in the middle of it, which is frightening. Time just freezes while I wait for the coughing to stop.
I am awed by the perseverance all the patients and caregivers who are farther along this path than I am have. I can’t imagine how living with your issues effects patient and caretaker feelings day in and day out. And all night.
I myself, with my beliefs of an afterlife, just can’t imagine hanging on that long.
Who was your mom before all this?
Thank you for articulating all this. I know it would have taken a while to type with fingers not moving as you want them too and the frustrations that once they would have with ease.
Thank you so much for writing this ❤️. I’m a Carer and it is so helpful to hear this.
That is really moving to hear what it is like from the patient themself rather than us carers. You are doing really well. Ruth has been happy to go on SSRI antidepressants from the outset and then over the years up the dose when the effect starts wearing off. And on the whole she stays in a pretty good frame of mind without them having any side-effects.
So heart-breaking to read. We are at swallowing issues, but still managing.
Stay strong. I hope you can find some solace in the comfort that you are able to bring to her. How worse off things would be without you there.
I'm not religious, so I like to remember this quote when people tell me I'm doing God's work..
"There is no greater religion than human service."
I so identify with you. You want to love and nurture your Mum and feeding is so intrinsic to that, but then you are torn because it such a nightmare for your Mum. I found meal times the hardest thing to do. I got carers to do alot of the meal times not just because I found it hard but because Mum would eat more with them - harder to say no to an uniform than a daughter.
You can buy/get prescribed nutritional drinks which have concentrated energy as well as a good protein, fibre vitamin & mineral content. They can be targeted to the swallow stage your Mum is at.
Thank you Martina -- we are down to soups, ice creams, cottage cheese, pudding, etc. Its so very sad to watch this happening -- my heart is shredding. xo
"Difficult to balance an urge as a caregiver to maintain nutrition and hydration with not wanting meals to become an ordeal and torture for my mother. Also, she never wanted to linger, and that was not even imagining her current state of not being able to move or communicate or express pain. But still, food is very central to the way we express love, and it is hard to resist pushing sustenance. We are not quite at the transition to ‘comfort feeding’ and possibly no feeding, but I know that is just around the corner." I feel this sentiment, reality deeply. Caregiving is excruciating when it comes to this point, when you know that to love them is to not want them to suffer longer than necessary.
Kim, I have been thinking about you and your Mom and wondering how you were doing. Sadly, it is what I expected. I am so sorry you have reached this stage. Hang in there. You are incredibly strong and you are an amazing caretaker.
Sending a virtual hug to you and your Mom.
I am sending you so much love as this is so difficult, you are doing an amazing job of caring for your dear mom but I fear the next chapter is going to be very difficult. Just keep doing everything you are doing and keep talking to her and maybe just keep food to thickened liquids or anything that she can manage and don’t worry about what she can’t eat. It’s such a cruel relentless disease and so hard on both the patient and the caregiver. Sending you hug hugs as you navigate this next stage xxxx
Kim, nothing useful to add from me other than virtual hugs and prayers for you both. Fiona
hi bazooka yes I experienced this my husband still struggles but about a year ago I researched atropine drops they are an eye drop
I have them in prescription I give 3 drops 3 x a day about 15 mins or up to 45 mins before a meal
I started him in 2 drops twice a day but had to increase it
It helps a lot with Sylvia anyway if this is the problem I had to persuade my doctor. For it but another doctors told me it was the best thing
I hope you can solve it good luck my friend
hugs to you
So sorry Kim, it sounds very familiar. You must feel torn apart by the wish for your Mum to eat and hating seeing how she struggles. Stay strong my friend, you and your Mum are an inspiration to so many of us. Hugs to you both xxx
Mum was prescribed nutritional shakes - they are tailored to the swallow stage and are concentrated for energy, plus protein and that all important fibre. They definitely kept her going for longer and were suprisingly nice.
Yes we experienced this. I nearly killed myself for probably 7 months tracking every single calorie, thinking up endless recipes of smoothies to balance out taste, texture, fiber, protein, and of course calories. (I actually lost 30 pounds myself in the last couple years caring for my mom due to lack of time and stress) I have many recipes if people would like. But it got to the point where I would spend probably 8-9 hours every single day blending foods and then attempting to feed my mom. Every swallow was excruciatingly slow. I would listen and watch intently to make sure it was going down ok, then a "follow up swallow" as I would call it - to make sure it had cleared and to get the saliva after, so that we didn't have choking. And still there would be coughing - terrifying and exhausting for both of us. It was so tense and stressful and yet also mind numbingly boring - literally months of lists of the smoothies with my calculations of how many calories had gotten consumed based on them quantity of the total eaten, and doing almost nothing other than eating.
Jump to a year ago now, when we finally got a feeding tube (Gastrointestinal). I'm so glad we did. It was stressful (I can post about that too if people want - questions to ask and what to expect) but INFINITELY easier than literally spending all day trying to get enough swallows in, and being so stressed about seeing her fade from not enough calories. Not to mention the stress of trying to balance nutritional needs and taste and texture, constipation and exhaustion and literally not enough hours in a day to get enough swallows in and sleep.
It raises many hard questions to consider though. I think this disease will most likely kill you through choking on food and developing aspiration pneumonia. That is the awful reality. Getting a G-tube took a lot of that immediate risk away, but we still have sips of water over the sink, and sometimes cough, and still have coughing just on saliva, so that risk is still there a bit. For many months we still ate a little, which was nice because then we could do it just for pleasure and sociability, and not worry about doing it to survive. Eventually though even one swallow took more than 5 minutes, and would almost always cause coughing later, even with 3 follow up swallows spaced a few moments, then minutes and then 10 minutes after, and so eventually we stopped all food.
Mom was not ready to go, and I wasn't ready for her to go when we considered the tube. It was happening too fast at the time. She was still able to speak a little bit very quietly at the time, so I could talk to her about it. But. It is hard to know in a way how long it may prolong a very difficult life which I'm not sure now she always wants to continue with. It sort of takes away that route of a heartbreaking but fast fade. Which some people might be ready to face at the point they would consider a tube because of swallowing problems. Again, I couldn't NOT try to feed her all day every day, and blend a million different items and count every calorie and still she got to the point she was losing weight and it was a lot of energy for her to try to eat and have all the coughing like that.
I haven't written on this site yet, but I have thought about it a few times. I've found this community the best resource yet for PSP, which is to say at least there are people here who understand what's happening, since no doctors have any tips, help, or anything, IF they even really have heard of this awful disease. I quit my job and moved home to care for my mom (She's now 74, I'm 35. Her symptoms started probably 6 years ago, but we finally got a Parkinsons' and then PSP diagnosis I think 4.5 and 3 years ago respectively. Her decline since a bit before the PSP diagnosis has been very fast. She now can hardly move her hand at all (sometimes can sometimes can't) to indicate yes or no, and can't speak or move otherwise hardly at all at will. She has been incontinent for a few years now. I'm her sole carer pretty much - my father is here, but is not very proactive or intuitive, or strong enough to lift or move her much. It helps that I am rather strong for my size, and I think I understand a lot of what she might need because my brother is severely developmentally delayed - legally blind and mostly non-verbal among other things- and so I grew up helping care for him (and seeing my mom care for him) so I can anticipate a lot.
My advice to a few other queries I've seen here is to not put off things that will make things easier on you as a caregiver. I'm not sure why we waited so long to just put pads on the bed and do diapers, rather than getting up 6 times in a night to go to the bathroom. I still don't sleep more than a couple hours a night without waking because of a cough (and attempts at adjusting her to lean forward to help with the cough and swallowing) but at least we don't spend 15 minutes with the lights and cold tile and bathroom walking back and forth multiple times and all that. It seems like a big step I guess, to do diapers, but I have really learned you just should accept that things are going to have to change a lot to accommodate all the symptoms, and you can't fight every battle all the time for years on end. I'm still really trying to learn this. It's so hard because in a way it is so slow - to see every day all day long someone continue to decline in every way, it's just natural to want to try to fight it or make it better.
Anyway, it's a lot to consider, and I know I’m addressing many topics in one post, sorry, but if people would like more info on anything I mentioned let me know.
Some quick food tips:
1)blend oils and butter into smoothies (calories!)
2)nut butters/seed butters (so many different types for different flavors
3) pre-blended avocado (wholly guacamole brand has this) or get avocado (sometimes they have little stringies inside you need to really work at to get out because they don't totally blend) because avocado has a lot of calories, but also a lot of fiber, good amount of protein, and is very neutral flavor, & doesn't make smoothies too oily.
4) full fat milk, even mixed 50/50 with half-and half to drink (this was a good consistency for a long time for my mom to take small spoonfuls of, and good calories, also can mix 1/2&1/2 with juice for a creamy juice with calories.
5) a garlic press to mash small amounts of things a lot when you don't want to get the blender, but to help with things like potatoes and sweet potatoes and even things like cheesy polenta (make with cream for the calories) and mix if you want with other foods.
6) little hand held fruit squeeze snacks, like apple sauce ones you can find at any grocery or Costco has ones that also have carrots and strawberries puréed with the apples- good consistency for swallowing, + liquid + fiber + easy to eat
7) shallow spoons for small sips seem better than a cup or straw for us at least
Hope this is helpful for some!-Whitney
Dear Whitney, Thank you so much for all the information that you provided. My husband has been diagnosed with psp in Jan. 2021 so I am starting to see many of the symptoms that you have mentioned. I would really appreciate any recipes that you would be willing to share. I can send you my email address if that works for you. All the best to you and your family. Your family must be so proud of your dedication and caring! Linda
If you’d like I can definitely send you the info in an email, but maybe I’ll also post on here under a new thread some recipes and just other tips that I can think of so maybe other ppl can see too in case it can help them. I’ll try to type it up in the next day or so
Hi Kim, I have been thinking about you and your mom and praying for strength and guidance for you both. You are a wonderful example for me. Your kindness and patience seems limitless to me. You alway impress me with your creative solutions. I wish that I had an answer to your question. I will keep praying for us to find a way through psp. A big hug from me. Linda
Hi Linda My heart smiles in seeing this message from you. I do not know what I would do without the friendships that I Have made on here. Thank you for the prayers. My husband asked me the other day -- after this season -- what do you want to do, where do you want to go --- I looked at him and said -- Well, I wish I could meet all my friends on Healthlocked -- he looked at me funny -- and I said I know, never mind, but you asked
Hi im so sorry to hear this. Everyone has given you lots of valuable information. Iwish i could add more. Praying for both of you. Keep being the strong person you are. Lots of hugs to both of you. 🌷
Hi, Kim. Sorry to hear this. I have to thank you for all your posts and photos. Stay strong in this last time together. A big and warm hug to both of you. Kiss. Elena from Buenos Aires
A little bit of sun shine
I remember well the time Ben could no longer swallow and he had lost all interest in food as his body began to shut down. I was always of the mind to have small amounts of very soft food at the ready just in case he fancied something but he rarely did. In the end I stopped trying to feed him as my instinct was that was the right thing to do. It’s so hard to watch someone you care for so deeply become a shadow former selves but be proud of how you continue to care for her, showing total love and dedication, she is a very lucky lady to have you to help and support he4 through this terrible disease, it is truly awful for all involved. Sending love. Kate xx
Big hug and courage.
Thinking of you and you lovely mum xx
Ruth is having a PEG fitted tomorrow. She is clear she wants it, but many choose not to. She is doing pretty well - still communicating just about - and the PEG will let us get nutrition into her later on in the decline.
You have done so well with your mother.
Hi Kim, You have been on my mind and I want to tell you how amazing you are and how blessed your Mom is to have you for her daughter and caregiver. This is not an easy journey no matter what stage we are at. This is perhaps the hardest- as the reality of the disease is intense and emotionally draining. You are in my thoughts-stay with us to help you through the days to come. Pat HUGS!!!
Sending love to you and your mum. Same here, my mum has lost 4 stone since Jan and is on a steady downhill slope with weight and swallow.
She is also on mainly smoothies now. It's very difficult to watch. I hope there's been an improvement for your mum xx
Thinking of you both!!!