My wife won't eat although she is still able to and does quite rapidly consume fresh strawberries and cooked plums. But nothing else for three days, and since yesterday not even the milk shakes fortified with protein powder, booster and wheatgerm that she has drunk twice a day for months. She is losing weight rapidly and is now 42 kilos, 10 kilos less than her normal weight until about 9 months ago. She says that she is physically capable of eating but not mentally. If anyone has experienced the same situation and found a way to re-stimulate the appetite or at least the willingness to eat, please let me know because I am desperate.
I initially thought it was the taste or texture of strawberries and cooked plums your wife likes and am trying to think of similar foods.
However in the interim -- here's something 'left field' that may be worth a try. There have been some studies done with people who suffer from Alzheimers on the colour choice of tableware. In one study red seems to be the way to go, over blue or white...
N.B. John's neurologist suggested to me about three years ago that there may be experiences I could learn from the Alzheimers Association that may assist me in the care of my husband as the PSP takes hold.
Article 'through 'Google' - Visual contrast enhances food and liquid intake in advanced Alzheimer's disease.
Dunne TE, Neargarder SA, Cipolloni PB, Cronin-Golomb A.
Source Department of Psychology, Boston University, 648 Beacon St., 2nd floor, Boston, MA 02215, USA.
Another thought - Will your wife 'CopyCat' eat. For example when you eat something, she does likewise?.... When I was helping my sister out (unwell with another condition) it seemed to work for a while for one meal a day..
I also wonder, do you have a speech therapist that works in with the care of your wife. Our hosipital network assigned one who meets with John on a regular 'as needs' basis. I am unsure how it works elsewhere, but here they look at how the body is physically and mentally coping and liaise with a OT and client and carer.I think it is prehaps a luxury service that does not exist elsewhere??
As an early-to-mid stage PSP sufferer, I know exactly what she's talking about. However, solutions are elusive.
I haven't had an appetite for a few years. For me, there is such a big difference between being really hungry and having an appetite. When really hungry, stomach growling, etc., I'll go the kitchen, open cabinets, the fridge, but nothing is appealing so I sit down and stay hungry.
Logically I know this is unhealthy and unwise. But I can't express enough how powerful a lack of appetite can be over hunger, and just the common sense need to eat even small amounts to fuel our bodies.
I don't know your wife's situation, but is it possible to increase her mobility? Even a little might stimulate to get in her what's necessary. If she used to like to cook or bake, perhaps giving her a few new very pictorial cook books might get her interested.
Just thinking out loud, but is it possible that one or more of her meds might be causing her lack of appetite, and if so, can an adjustment be made? Or a med added that might stimulate her appetite?
I would be worried tho if in the immediate time-frame she continues to not eat; I'd be inclined to get her checked out to make sure she's medically stable in terms of electrolytes etc.
Best of luck; this is just a tough issue with no easy answers because I'm going thru it myself and haven't stumbled upon something that works for me yet.
Please keep us posted on how she's doing and if you find things that work.
Thank you, Judy. My wife now can hardly read or write or talk, has a tendency to fall, walks with great difficulty and will shortly have to have a wheelchair. She has had PSP for some years - we don't know how many but at least four and was diagnosed in 2010. She wrote me a note the other day to say she wanted to die but I don't think she is deliberately starving herself to death. As I write she is trying to eat a meal but struggling with every spoon and fork full. When I return to the table I will find her staring at some food on a fork about three inches from her mouth. That's where it will stay until I gently move her hand - when she is just as likely to return the food to its plate. I am not a great cook but a year ago my wife seemed to enjoy any of the 15 or so dishes that I could prepare for her, given her swallowing difficulties ( which incidentally she now seems to have under control). As I explained in my question, the only food she enjoys today is fruit.
Judy, it is a possibility but in all probability my wife will refuse to have a feeding tube, preferring to die. I would not blame her from the stories I have read.
Mom held out getting assistance with eating for a very long time. Some things that helped were minimal distractions while eating, raising the plate so that she was able to see the food, and making sure that the food was cut up into 1/2" pieces. We now feed her 100% of the time as she is no longer able to feed herself. We use alot of pastas dripping with sauces, oatmeal with milk stirred in, eggs scrambled, thick it in her cranberry juice, muffins dipped in coffee with thick it, etc. We also get a handle grasp from the OT's that allowed her to better hold her utensils. She drank all liquids with a straw.
She has lost weight. There are some days when she will hardly open her mouth enough to get a spoon or fork full of food in. The following day she will eat voraciously. She chokes more frequently, more from a liquid consistency. It is heart wrenching and frustrating. On the days when she struggles to eat she is more apt to eat for someone else than for me.
I believe if you go to psp.org you will find some videos and seminars on swallowing issues that I have found helpful. It's a good site that has given insight as a caregiver.
Keep the faith.
Kath
Thank you, Kath. I am doing all the things you mention except muffins dunked in coffee which I will now try. At the moment my wife's swallowing is not a problem if she takes things slowly. She has returned to fortified milk shakes after a lot of persuasion and these will keep her alive but I fear she will become too weak to walk if she does not eat 'properly'. You are right, it is heart wrenching.
Is it possible she is tired of dealing with PSP and is trying to starve herself? Just a thought. Have you already discussed feeding tubes? My wife and I had that discussion and she doesn't want feeding tubes. She says they might keep her alive beyond when she is ready to pass on. I've read that can be the case for some people. I'd recommend that discussion be made as early as possible while the patient can talk and respond to questions.
Jimbo
Thanks, Jimbo. My wife feels the same way as yours. Her quality of life is already greatly diminished and we are led to believe that in the circumstances the feeding tube process can be torture. Even my wife's neurologist says it is very unpleasant. Things looked up today, she ate a three course meal this evening - avocado mousse, chicken curry without the rice, and rhubarb desert. It was a great effort for her, over two hours, but I pray she finds the strength to continue along that path.
Glad to hear the eating went better today. My husband does have a feeding tube, but even with it he can opt out of a feeding. He is also taking some puddings and pureed foods orally. His muscles of mastication (Chewing muscles) were affected, as well as the ability to make a bolus of food and move it back to swallow. Anyway, he was down to a very low weight when the tube was placed, has managed pretty well to maintain that weight, not loosing any. Like I say though he has days when he would rather not eat or have a tube feed. I think the biggest concern is to make sure these poor souls don't become dehydrated. That could cause other problems that they don't need. Hope eating continues to get better for your wife.
Thank you, Joan. Does your husband have to remain attached to the tube all the time or can it be removed? If it can't what is it attached to when he is not feeding? Can he drink normally? Do his bladder and his bowels work normally? Is he a willing user of the feeding tube?
Your response gives food for thought - no pun intended.
My husband continued working for some time after he developed the many symptoms of PSP. The workshop manager adjusted the environment to suit as he highly valued John's skill as a mentor/adviser for other men who worked in the company. In the year at least before he left - all John ate for breakfast and lunch were large quantities of fruit. The guys he worked with thought he was on a health kick - and drew it to my attention. Until then I hadn't realised and when I asked John why - he said he just did not feel like eating anything else. I was concerned about the giant lunchbox of fruit he took to work so addressed it with the the speech therapist we had (who specialised in Huntington's Disease and MSA and CBD) and she informed me it was commonplace activity for her to hear about.
At the time I did wonder whether John liked the type of sugars the fruit contained. In the evening he didn't reallly care about what food was served either. I do now wonder if he chose to eat fruit as, it was convenient and easy to pickup to eat.
N.B. Why I thought of this is because I have just thrown away the container - and until now forgot the purpose behind its purchase.
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Eating
