Last July I started to feed Larry. He was giving up on his plate after he got half of what he was served into him. He had started to noticeably lose weight. When I started to feed him he had no problem with eating everything. Over the last few months his weight started to slide again. In January of 2017 he weighted 210 pounds. If he weights 165 now I would be surprised. Most of his fat reserves look to be gone. His stomach has shrunk. His voice is getting weaker. He seems to be having more trouble with the little walking he does. His confusion delusions are up. I know he is well past the half way mark in this disease. I am not sure if this is the beginning of end stage or not. He’s had no serious infections to date. I tell his doctor he is in remarkable condition for this disease. I just don’t know. Sometime ago I had asked if he wanted a PEG and he said no.
So thin: Last July I started to feed Larry... - PSP Association
So thin
Big hug Jeff. I know how difficult this is.
Love from Jean xxx
Jeff also sending you a big hug, you are doing an amazing job xxxx
We went through the same thing...from 230 lbs to 115. He was eating everything, and just kept losing weight. At that point, he agreed to a PEG tube. The operation was in March of this year. It has been good for him. He has put on weight and looks fine. He gets a well-balanced, healthy food (NOT what the hospital gave him). And, as important, he is now properly hydrated. He now eats orally for pleasure, not sustenance. Here is a link to a very supportive organization oley.org/ Feel free to ask me anything about it.
Best, Christine
Thanks.
Dear Jeff
We experienced a similar pattern my husband was adamant he did not want a peg .
Have you checked with a Dietician if food supplements may be helpful to keep the weight up and get the calories in.
Sending you a big hug and lots of love Tippy
At this point I don’t know if he would make the effort to eat anything to boost his calories. He is eating as much as he wants. Hoping this is a phase he will pass through.
I think eating becomes exhausting, at times my husband would just hold the food in his mouth - it is so hard...... The Dietician prescribed high cal powder each spoonful carried around 200 calls it was tasteless so can be mixed with a few spoonfuls of whatever is being eaten. My husband hated the high cal drink supplements !!!
Big hugs
Love Tippy xxxxx
Try getting high protein in your husbands meals. If, as you say, he has used his bodily fat reserves then the next thing will be muscle mass loss. Some yogurts have 15g of protein per serving, powdered milk or peanut butter added to smoothies, eggs and supplement drinks are good source of easy to eat protein.
Ron
Jeff it shall such a worry....I always read your posts and think you are doing a brilliant job with Larry xxx
Agree!! You remind me of me. If you are OK, I will be OK - hanging in with you all the way, Jeff💗
Hi Jeff
You are doing an amazing job.
It's tough. My Liz is much the same. All we can do is to be there for tham and that is worth everything isn't it.
Best to you
Kevin
Hi Jeff
Really feel for you. I find feeding Mum one of the most stressful & distressing parts of this condition. You want them to eat but it is so obviously so much effort for them and they get so tired. We have had SALT & Dietician involved and they have prescribed nutritional drinks of the right thickness for Mum to swallow without choking, on top of that she has a little soup and jelly & ice cream (which I try & smuggle a rich creamy dessert into as she has the ice cream virtually melted). She has two different drinks which give her about 700 calories and have slightly different nutritional profiles - one is high protein, one is more concentrated energy. I have also found that Mum eats (slightly) better with a carer than me, the uniform effect I think, so let them do most of the feeding now. Like Larry, Mum does not want a PEG and I have to be supportive of her in that.
Agree with Kevin, being with them is so precious, sitting quietly together, holding hands, it gives a great deal of comfort to both parties doesn't it, heartbreaking though it is.
My father also refused a PEG. He’s struggling now just to eat a few teaspoons of food. He’s terribly thin and very sleepy.
You wouldn’t allow an animal to continue living like he is. It’s heart breaking.
Hi Jeff - we're at just about the same stage with Mum and I've wondered the same about just how far down the road we are. Mum can move a little bit using a Zimmerframe but can't get up or down by herself and it's not safe to leave her because she'll try and move by herself and, nine times out of ten, end up falling. Her voice is barely audible (apart from the odd times that she'll shout something out) and her ability to put together a meaningful sentence has all but disappeared. She's steadily found eating more of a challenge since July and by the time she was admitted to hospital at the end of April she'd lost almost a stone. Swallowing is intermittent - sometimes ok; sometimes she coughs and splutters but it's the effort of using cutlery and actually getting a mouthful of food to her mouth that seems to cause the most problems at the moment. We started taking in a small tub of Greek yoghurt each day with a bit of honey - (easy to swallow and a good source of protein, calcium and calories). That, together with getting one of the nurses to feed her (agree with AJK2001's comment about the uniform effect) and a softer diet that we persuaded the hospital to move her on to, has meant that she's put on half a stone since then. Mum has already said that she would want a PEG but, perversely, the medical team seem to be steering us against this when the time comes. Something we're going to have to consider a bit further down the line - sigh. Really feel for you - it's so hard but, as everyone else on here has already said, you're doing a brilliant job. C
Hello Jeff,
My husband has had two significant weight losses. At the beginning of the disease (2014), in fact that was the first symptom, from 72 kilos (158 USA pounds) to 56 kilos his height 1.72 mts. He gained weight with a high calorie diet and went up to 64 kilos (140 USA pounds). Diagnosed with PSP May 2018. His weight on December 2018 was 64 kilos (140 USA pounds) today he is 51 kilos (112 USA pounds). I have added eggs, meat, heavy cream, butter and he has one or two ensures per day. Nothing works. I have talked to different doctors, the Geriatrician said he is not absorbing the nutrients anymore. She told me I am doing the right diet. We have to watch the sugars since diabetes will be another thing to deal with. Urologist said too much "ensure" or "protein supplements" in excess can affect kidneys specially if they are eating other sources of protein. Doctor said, a human can survive for years with that significant weight loss since in Dave´s case his kidneys, liver, heart and pancreas are working properly. So in other words, we just have to take one day at a time. Very hard. Love to all the PSP family. English is my second language so...
Larry has a history or kidney stones. Kidney failure is something I am thinking about. I can see the body not absorbing the nutrition any longer.
I wonder to what end we try to get more nutrition into our loved ones that they don't want or need. If they are eating and still losing weight, doesn't it mean that their body is no longer making use of the food? My husband never had a love of food (I always said that he ate to live while I live to eat!) so he had no real desire to eat a lot. We all tried everything to get more food down him because I doubt that he weighed 100 lbs when he passed away, he was just skin over bone. I wonder now if we just prolonged his life by doing this. I wonder if it would have been better to let him rest in peace. The last vision I have of him is us pouring Ensure into his mouth and him letting it run down his chin when he clearly didn't want it. It seemed like the right thing to do at the time, but I wonder now, were we doing it for him or for us? He never wanted a Peg and I feel that it was the right decision for him.
Pat
Larry loves to eat. When he says he’s not interested in eating I will know the end is near. To date he still wants to eat. I am making things that are easy for him to eat plus have some interest flavor wise. I’m eating the same thing.
My husband and I talked a lot about the quality of life and he was very clear. When he had had enough he clamped his jaw. Because of our conversations I was able to communicate and he was clear that he had had enough. He enjoyed his food but by then he was choking on puried food.
It was hard not to try to force feed him but felt important to allow him control at last.
It must be difficult if you don't know their wishes.
Our GP also agreed how healthy he was apart from PSP.
It's a nightmare. Love from Jean xxx
Dear Jeff. I am sorry that you are suffering. We all feel that our loved one must eat and it is distreesing when they don't. Nigel stopped wanting food and the dietician gave him high protein drinks which he did not really like but I bought full fat greek yogurts which were always enjoyed and chocolate mousse and pureed fruit crumble with custard and pureed sticky toffee pudding - all the things were supposedly bad for him but which he enjoyed and his weight stabilised again. To get him to drink I gave him milk shakes especially banana or chocolate ones and he loved the thick mango or pineapple drinks. We were advised that pineapple breaks down mucus and it did seem to help. Once I stopped trying to get him to eat 'healthy' food mealtimes became fun again but they could be at any time during the day or night at it was useless trying to stick to 'meal' times. A little and often was enjoyable for him. I expect that you have tried all this as you are a super carer but thought I would just tell you what I found helped. Good luck and big hugs. AliBeexx
Yes . Me too. One of the joys of that stage was him being able to have all the " naughty " foods . I fed him and it was a precious time with fun and intimacy.
X
We had the same experience, the physio said that so much energy is used up because the muscles are constantly contracted (rigidness) that they don't eat nearly enough calories to compensate. Hope that helps.
Love Kate xx
I does. I got protein drinks yesterday while shopping. Now let’s see if he can drink them.
Just catching up on posts jeff.
Im having the same struggle with mum shes so thin its heartbreaking when i wash her on a morning seeing just how much she has lost.
For the first time this week i question how easier would the peg have been.
Like larry she made the decision not to whilst she could still communicate well .
I see your going to try protein shakes for larry let us know how he takes to them.
I like you have questioned this last week whether we are end stage. Feeding mum takes forever she has been keeping food in her mouth. Clamping down on the spoon or straw refusing to take more than a few mouthfuls and falling asleep during eating .
It has been very hot but i have kept her indoors .
The one thing that does seem to work however is sponge and custard the last two days that has gone down well
There seems to be quite a few of us going through this at the moment so we will just have to all muddle through together
Hugs to you and larry
Lynda 😊
The ice cream and cake after dinner is never refused even if all of dinner doesn’t get eaten.
Not what you're looking for?
You may also like...
Tissue paper thin skin
So the truth comes out
Which symptoms occur when?
So sad
This disease is so cruel
This made me so happy! + DIET DOES MATTER!
So tired!
So unexpected
