My mum has been in hospital over a week now with urinary retention while they decide whether she needs a catheter or not. We found out today that she has aspiration pneumonia again.
I feel so upset as I feel quite responsible for it. She was told she must have thickened liquids and puréed food and she absolutely hates both so she was not drinking enough and getting so thirsty and losing weight. She asked for coke and other types of food not puréed - she was just pushing hospital food away and calling it mush.
So I brought other things to the hospital for her and helped her eat and drink. at the time it felt like the right decision as I just wanted to see her happy and comfortable and I honestly thought that she wouldn't get ill again so soon.
Seems we've learnt a lesson the hard way. I still wonder - do we respect her wishes for liquid or just tell her no and give her the thickener which makes her dry heave and get dehydrated? Up to now food has been her only pleasure (I think)
Maybe she will change her mind after this as she will realise that having constant pneumonia is no life either.
It just seems she is declining so quickly and she just seem so vulnerable now.
Cate
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Hi Cate - have you used "thick it"? Thick it can help you with the level of "thickness" and it also doesn't change the taste of food or liquid -can be used in hot or cold food - I would try some in some blended chicken noodle soup to give it a try. It is by far the best thickener out there - -also we used seltzer water and dad didn't need to have that thickened - -small teaspoons - -it also helps break up phlegm. Don't beat yourself up too bad - -we all go through the trial and error with PSP -you were doing what your mom asked you to do.
Where can we get 'Thick it'? I notice you say Mom- is 'thick it an American product? If so I will ask my daughter to look for it as she lives in Brooklyn.
Hi Dianne - yes I am in the States! You should be able to find "thick it" on line -there are also pre-thickend juices and some soups if you poke around - those can be really helpful on "challening" days. We bought thick it from Costco or bought it in bulk on line. It's spendy but well worth it. Since your husband needs it to eat - you might be able to get it covered?
Sorry I should explain -it's my mum who has it. She has had to go into a care home for her safety just recently but I know the care home would be happy to use it when it becomes necessary. She is ok on normal thick food at the moment and drinks tea with a straw but it still makes her cough a lot. I think it won;t be long before we need to get her onto thick drinks but she already gave up Horlicks a few months ago saying it is too thick so I can see trouble ahead!
Sorry to hear about your Mum. I have a hard (impossible) time saying "no" to my Dad too. My sister is good at it, but I just can't. I'm sure you are doing your best, and a wonderful job of taking care of your Mum. Watching a parent decline with this disease is one of the most difficult and frustrating things a person can go through, and we are all in this together. I hope your Mum is feeling more comfortable soon. Good luck finding a solution with the food and drink.
Hope your mum will soon be feeling better and as the others have said above, it's all a matter of trial and error and you thought you were doing the best for her. Don't beat yourself up about it. You are obviously a very caring and loving daughter and I'm sure your mum would hate to think you are blaming yourself for her illness.
Easier said thandone , but don't beat yourself up about it . You only what you think is right at that time .
You won't always be right any more than the doctors , it's such a difficult illnes to treat and frustrating .
I always say , people who don't do anything don't make mistakes or get things right .either .
When my mother lost my father , I took her under my wing more and use to tell her " I WILL FIX IT MUM ". I did this for 20 years and most of the time got it right . Then she suddenly had a very bad stroke . When I went into the nursing home , which I did daily I told her I am sorry Mum I can't fix it anymore .
SHEWOULD GIVE ME A CROOKED SMILE , SHE DID UNDERSTAND .....
Yes, it is so hard to get it right with PSP. What is more important - quality of life in the moment or quantity of life? I wish it was a question I could ask my mother and one she could answer...but she has lost all speech recently.
Today at the hospital they said that she in fact doesn't have aspiration pneumonia again. She had a temperature spike and they made the assumption....wish they hadn't as I felt so guilty. Much better now but made sure that I gave her thickened liquid today.
What a relief! And hopefully she will be home from the hospital this week.
That's wonderful news Cate. I'm glad she doesn't have pneumonia. Don't feel guilty one bit! We all do the best that we can - -and guess what -no matter what you do your mom will probably get pneuomia again - -that's unfortunately the reality of PSP. You could give her absolutely nothing by mouth and she can get pneuomia simply on her own saliva. Pleasure if definately part of the quality of life and if your mom wants to eat - -well then do the best you can and give her what she wants. I still fed my dad by mouth some when he got his peg-- I told him "now you can get all the nutrition through the PEG and all of the junk through your mouth!" we got whatever he wanted and let me tell you --we had LOTS of cheesecake!
This is the part I am dreading most of all the nasty bits there are. My mum loves her food and it is already a large issue to her at middle stage that she has been told she can't have things like limp lettuce etc and that she chokes on runny drinks like tea. She can be quite snappy if anyone tries to help her with getting food onto her fork but takes an hour to eat. I am also grateful for the warnings and advice on here which will help to prepare me for the next stage.
I'm sure you are on a road that I will face with my wife down the road (swallowing). I bought some THICK-IT today to try on her but I'm sure she won't like it. I think that if they don't want to do what they are suppose to do you have to give in to them. PSP has a bad ending no matter the cause of death so possibly some enjoyment in the end is not a bad thing. I'm curious what others may think. Hang in there!!
We have been trialling and making errors with 'thick and easy'. I think it was introduced sooner than was necessary and too much, making the drink like wallpaper paste. Mum hated it and refused to drink it. I used to find her in the hospital with her tongue glued to the roof of her mouth and her lips stuck together. My daughter visited one day and gave her a glass and a half of unthickened water in ignorance and Mum took it without a cough, gulped it down. So I continued to give unthickened water. I know she looked forward to my presence so that she could quench her thirst. She now needs the thickened fluids and she knows it, but I make it syrupy rather than solid so she can suck it through a straw and she manages it. Some days are better than others, it is hit and miss every day, respond to the condition of the day. And we all make mistakes. I agreed with the last comment, there has to be some enjoyment and a feeling of making their own decisions for these sufferers.
On the subject of thickeners I don't know which one your Mum is on but Mum's speech therapist uses one called Nautilus (I think that's how you spell it!!) She says it's much better than Thick and Easy because it doesn't "clump" together, even in hot drinks and it doesn't settle to the bottom of the cup!
It seems that we have to make the most awful decisions and then when it doesn't go right for us we always blame ourselves. We can only do the best we can along the way. It's no easy task to take on the burden of caring for someone with this rotten disease. We held my husbands funeral yesterday after he contracted yet another bout of aspiration pneumonia. He just wasn't strong enough to fight it any longer
We were offered Resource Thicken up Clear to thicken his drinks,but I think you will need a speech therapist to ask your GP to prescribe it for you. It helped my husband once we got the thickness right. It's made by Nestle.
I am so very sorry to hear that. My thoughts are with you too.
Thanks also to everyone for all the thickener tips. We will have to find something she likes as I think she is using something called 'thick it' in the hospital and she can't stand it. Trial and error I guess.
you are doing so well. I am thinking of you lots - just checked in here to see how things are going - so relieved it wasnt pneumonia. we all face different things at different times. at the mo my mum is falling out of bed 4-5 times a night (due to the REM sleep disorder part she is getting out of control at night, even though when awake is more and more paralysed. Its all so weird). she really doesnt want a hospital bed at home but we are left with not many choices.
I am sorry that your mum has lost her speech - my mums too is hanging on by a thread. I cant imagine it going completely one day - how did it happen with your mum - was it there by a thread one day and gone the next? I remember wondering how it could be possible that one day she wouldnt be able to turn in bed - of course it happens just as they say it will, and then you forget the time when they COULD do these things. I also remember you being the first to say to me about how much your relationship with your mum has changed - its so true - life takes on a whole different way. Keep up your amazing support and dont forget to get some time here and there for yourself and to reflect on the good times you had with your mum. This is what I have been trying to do (at 5am after getting her back into bed-when she is sweating and smelling of urine due to the leaky catheter, and when I feel like screaming).
Oh Claire, you are honestly such a great daughter for what you are doing for your mum. I really do feel for you - interrupted sleep makes life so difficult and on top of the physical challenges, you have the emotional difficulty of seeing your mum like that. I can empathise, but you really are in the thick of things whereas I am more peripheral. It is so very difficult. Mum is home today and very thin and frail but ok. Now we have to try and fatten her up a bit.
As for her speech, it just seemed to get quieter and quieter, but it wasn't progressive in that she had long periods where her voice seemed to come back again and then all of a sudden, it was gone! Hopefully it may come back again for a time when she gets some strength back, but I'm not holding my breath.
So glad your mum didn't have pneumonia after all. I think you may have to consider, albeit reluctantly, thickened fluids and pureed food or a PEG. You have to do what YOU think is in your mum's best interests. My mum also called the pureed hospital food mush!
My mum has been having thickened cold drinks for about 18 months now. We started off with Thick and Easy and we are now on Resource. I only make it the consistency of a thin syrup (like you would get in tinned fruit) and she doesn't have it in hot drinks at all. Coffee, tea, hot chocolate, Ovaltine she has managed up til now, The only thing is I have recently started using an oral syringe to give her them as I can give measured doses which lessens the choking and I can ensure she gets a full drink instead of her gulping out of a cup and most of it coming back out.
In addition to the feed she gets through the PEG I give her ice cream, yoghurt, mousse, chicken soup and tomato soup and chocolate. Those Cadbury's choco rolls are just the right size, pop them in her mouth and they melt nicely!
Like everyone else has said no two people seem to be the same and by trial and error we find out what is best for OUR loved ones as each new symptom presents itself. I have had well-meaning people suggest different things that have already been done like a drinking straw or a beaker with straw. I tried these ages ago but mum just hadn't got the strength to suck through it. But at least their suggestions were positive. A couple of weeks ago I had two close relatives tell me that if anything happened to mum whilst I was out then the authorities would throw the book at me! I go shopping once a week for an hour and occasionally go out for an afternoon with my sister! I couldn't believe my ears! I stuck up for myself but I shouldn't have to justify myself to anyone! I gave up my job and life as I knew it over three years ago to move in with my mum to look after her. It's easy for people to criticise when they have never cared for anyone 24/7. Rant over!
What I'm trying to say Cathy is that no-one knows your mum like you, so stand your ground and don't be bullied into doing anything which you feel is not right for your mum!
Please don't beat yourself up. Dealing with PSP is so difficult. So little is known about the correct way to deal with this disease. My heart goes out to you. You are a wonderful daughter.
My experience with my husband who passed away in May was similar to yours. He loved his food and when he requested ice cream it was so very difficult to refuse it. The same with regular water. When he was coughing so very much it was next to impossible to refuse water. In the end it didn't make too much difference. The disease took its own course. I do not want to discourage you, but I will tell you what his very caring, compassionate and sweet physician told us after he returned from the hospital, in a weakened condition from his first bout of aspiration pneumonia. She gathered me and our two children around her and told us not to prolong his suffering. She warned us that he would probably contract pneumonia again in two to three weeks. If we again sent him to the hospital he might once again rally . This pattern could repeat itself several more times with his getting weaker and weaker each time. Soon after this conversation he started sleeping more and more, did not want to leave his bed and didn't want to eat. We discussed a feeding tube with the doctor and she told us that he was telling us that he was ready to let go. Even his caregivers who were very fond of him and had constantly said that death was not imminent began to tell us that he was communicating his wishes to us. They were all right; within a week he stopped eating - coughing and sleeping all day and night. On Wednesday his brother came from France, he looked up and smiling ever so slightly said, "Michael!" He died peacefully the next day.
I hope that what I've said is not too blunt, too harsh. I hope that I haven't offended anyone.
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