Each day, each hour the worry never stops. Unending and constant. Charles is coughing so much now and can't take in food very often, so the weight loss is staggering. The ups and downs and the struggle makes me so sad.
I still yell at him when he moves too fast and almost falls in the bathroom, we will need to make that change soon. Then I feel terrible yelling STOP but he never seems to listen. Helpless, hopeless and worried sick, literally.
We've been together 26 years and I thought that was alot but given the other PSP spouses this is nothing but for us it is something. We still find time together but I cry just watching.
Cuttercat
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Cuttercat
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CC I'm gonna tell you what youre telling yourself....stop yelling baby....for both YOU and your husband.....
start getting rid of the guilts now!!!!
As soon as he gets up you get up and guide him....I don't know how strong you are but believe me this method I'm about to tell you is easier than getting him off the floor: Get him to wear a belt or better yet a vest with a handle in the back. When he gets up....no yelling just guidance...hold the strap and gently guide him in the way he should go. I remember Bruce feeling or behaving a little more securely when he was being directed (truth be told I don't remember using the vest, wish I had!). The snug vest with a handle may help both of you. He'll feel more secure and you have more control. By the time my husband was coughing, he was no longer able to walk so you guys have something over us. I remember I had a studennt who needed one of these vests. She could walk but needed assistance EVERYWHere she went and I had to hold on to via the vest.....it worked really well for her...and me....
If he is coughing, is he getting enough oxygen to support him getting up and moving? does he have an 02 tank?
Please know I love you and I'm sorry for your struggles but I sure want you to find a productive and less stressful way to take care of Charles....
We have a gait belt and soon will be bed bound. He mermaids with his feet. One on top of the other. Falls are my biggest worry but tonight it's the coughing. Either way I lose
Ben does the same with his feet, he can't walk at all but can weightbare for moving him on the wheeled standing board from bed to chair of commode. I have to put a foam yoga block betweeen his feet to help him get some kind of balance. He also stands on tiptoe as not able to flatten his feet now.
CC, I am sick to hear the sadness and frustration in your post. You feel helpless, and the situation is hopeless, isn’t it? Are you transporting C in a wheelchair to the bathroom? You must be totally exhausted. I, like you, have spoken sharply to my husband when he is about to fall. He asked me why I was angry at him, and I replied that I respond that way out of fear, not anger. Fear that he will fall and break a bone, fear that I cannot get him up, fear that I will hurt myself trying to get him up, and then not be able to care for him. We didn’t ask for this type of life in our senior years, but will persevere, won’t we?
Andrea how are you beautiful lady? George is coughing so much like Charles, George cannot walk anymore it is heart breaking to watch, like babowen said sometimes we shout because we are frightened if they fall and hurt themselves, Andrea is also right about giving the instructions, don’t you just hate this illness. Yvonne xxxx
CC hugs to you. You are living through a nightmare as so many others are, or have done. You yell because you are scared for him. We all do it. It's instinctive. If you saw anyone about to fall you would yell and grab them? It's no different with Charles. Apart from the fact he's the love of your life? No matter how long you have been together that feeling is the same.
I think Andrea's idea of a vest oir harness to hang onto him are good ones. It is much harder for a woman to hold onto a man.
Have you tried him with smoothies for the coughing? It worked well for G.
Hi Cuttercat, so sorry that Charles is coughing such a lot. My husband has been coughing quite a bit during the past week. He also makes a continuous deep growling sound from his throat as if he is trying to clear his throat, but no phlegm came up. It is worse at night. On the days when he feels unwell, he tells me that he is dying. All I can do is reassure him that it's not his time and that this horrible disease is giving him these bad days. He attends the hospice on a Wednesday (palliative care) which he looks forward to and I have 6 hours of 'me time'. He can barely walk on his own even with the various walking aids. On good days we watch the tv or films of his choice. He has a mobility scooter and sometimes thinks he is a'boy racer' when I drive us into the town centre for a meal (soft menu)of course or to do some shopping. Sometimes he looks so sad that I have to h
CC, I. don't post or reply much because Steve is always with me and I worry what I read may upset him since his approach to this monstrous disease is "I am ok" Not denial, but determination. Breaks my heart. You have been very kind to me when I first joined this group. Please know I'm sending love and prayers for you and Charles.
Sorry my fingers are working faster than my poor brain. I was saying that I have stop myself from breaking down in tears until I am on my own. How I hate this cruel disease. Well, enough of my ranting. Huge hugs to you. Esther(teeker)xxxx
When Dan would try to get up alone , or not listen to directions, I too would yell a little. Like you I was worried about falls. He had many. I don’t think he was at all troubled by my scolding him. He knew I believed he could do better.
Now , most feel he has no thoughts or feelings. I know he is aware of most things. I see emotion etc.
He is able to speak, but is usually to apathetic to put forth the effort . Some days he does not utter even one word. I hope to purchase a Wheechair Accessible Vehicle and ramp to take him out, but I’m even getting nervous about that. Not much coughing yet, and he eats OK. Sometimes he leaves a sandwich next to his lips for several minutes without taking a bite.
I understand your frustration. So much is not in our control. The worry never stops, nor does the sadness, frustration and anxiety,
Thank you for the compliment. I needed that. Everything you say I understand. As far as going outside, don't bother, their eyes can't take the car rides anymore, the motion upsetting.
Isn't it hard to hear not one word all day long! Lonely when I talk to myself all the time. I know he hears me and is happy but it's sad nevertheless.
Dan does not seem to have too much trouble with his eyes, but he cannot walk at all anymore . Although it is very hard, I think it’s actually easier then the constant loss of balance and falling. We walked and guided him as others hAve suggested, but there were still times when he’d shift funny and take us both down. He is also completely incontinent. Has no feeling until he’s actually going. Therefore , he no longer asks to use the bathroom.
Sometimes I ask him to please respond with a “yes” or a little head shake and he just stares at me . Then, a nurse comes and he says Hello and follows her directions. I believe he understands most things because he will sometimes react emotionally to what I’ve said. His big smile and kind words are what I miss most.
It's as if you were here with me. It's Charles to a T. Charles understands everything but easier with other people. Gets used to me being here. And his smile makes it all worthwhile
Dear Cutter, I'm so sorry the struggle is so difficult for Charles. I have a lot of days where I'm exhausted, and heartbroken for my husband, but he doesn't suffer so continuously from the choking and coughing! It has to be incredibly wearing on you. I believe you said he wouldn't take a feeding tube... You must be feeling that you're close to the end? Please try to take care of yourself - you're in the hardest part of the journey I think.
I thought the same about the end but not yet. The coughing comes and goes but they say it will continue. Have you heard this? Does it go to the end? Hope not.
No, I havent heard that. I only realize each person's psp journey is different; but it seems with the difficulty in eating, his losing weight and not going to a feeding tube, seems like you are on a steeper downward slope than before. I hope that wasnt insensitive of me. ❤️💛💜
You are not alone. I can’t imagine feeling any other way than like you. I too find myself getting agitated when my wife does things that are unsafe, and I realize it does not do any good for me to get upset. I try to just love, protect, and clean up the messes made, although I have had enough lessons in patience
26 years is more than enough time to develop a deep bond of love and compassion.
I do the same, I want to keep him safe and comfortable and I have learned not to even mention the unmentionables. Patience is hard when you're in the middle of it all. Can't shake the emotional because it's my man.
During myhusband’s last 6 months or so before his death,I walked beside him holding his hand or behind him with my hand on his back.If he started to lose his balance I could right him before it resulted in a fall.Before this he was falling several times a day.This really tied me down but was much better than getting him off the floor and risking injury for us both.He has been gone now for 9months and reading posts here bring back so many painful memories and my heart goes out to you!
Hello CC
I do mirror you and understand what your feeling.
All the words in the world can't make this better for you and your love.
In short these are my experiences expecting they could be useful:
•Phlegm and choking:
The first thing is to remain calm during episodes of truly shocking coughs. The second is that a physician rules out an infection in the respiratory tract.
•It is not a big problem that the patient swallows his phlegm. For phlegm to be fluid, it is important to drink liquids. Steam inhalation from boiling water with a few drops of Eucalyptus essence and a small spoonful of Vicks Vaporub (Olbas Oil in U.K.) with a towel covering head and bowl helps. (One to three times a day.) Medications like "Mucosan" (Ambroxol hydrochloride) in the morning and in the afternoon help.
•In case of choking, raise both arms at shoulder height, breathe only through the nose intensely if posible. I not, inhale air intensely but not very fast through the mouth. Retain air a couple of seconds and then force the cough.
•There is a suction machine which helped a lot with the very sticky phlegm. We have NOT used it yet.
•A steam atomizer to keep the air in the room moist helped, too. (40% - 52% moist advisable.)
•The physiotherapists have exercises reinforcing trunk muscles to improve the cough response to choking.
Food and Drink:
Prevent solids or regular liquids from reaching the lungs to avoid eventual “aspiration pneumonia,” (Besides falls, this is another very important risk.)
•Add thickeners (eg, Resource from Nestle) to drinks (water, Aquarius orange or lemon or similar, etc.) till obtain a bit glutinous liquid. To drink, it is advisable to use a special cup (Ornamin 815) with the chin as near as possible to the chest.
•The food must be moderately doughy and in small pieces if solid.
•The speech therapist has insisted that she should not take meals that "deceive" the mechanism of swallowing that is damaged. The foods that “deceive” are those that have liquids and solids in the same bite (eg, some beans with soup or a soup with pasta).
•Making a puree with a hand blender is always a solution, but it is preferable to crush with a fork until a homogeneous paste without liquid and so as not forget the function of chewing.
Foods:
Mediterranean diet emphasizing on fruits (peeled fruit avoiding the presence of seeds) and vegetables; high fibre diet... no so much pasta or potatoes (always with a size of each piece of pasta between 1/2"- 3/4"). Fruit compotes in small pieces or better crushed using a hand blender. Dates and ice cream are well tolerated and thick milkshakes from Wendy's (Frostys).
Try Jelly.
In line with these suggestions, I introduce a phrase by Kevin (from chat group HealthUnlocked): "Food and favorite foods are really important. Food is is comforting and if familiar it gives so much pleasure in a diminishing world."
•Exercise:
6 days a week: passive in bed (move all major muscles) and active (helped by 1 or 2 people). At least go up and down 50 steps (odd days), walk 200-300 meters (even days). Speech therapy exercises and exercises of mouth and ocular muscles. Then she needs to rest at least 30 minutes.
•In general it is important to encourage the patient to do things on their own. It is good that everything the patient can do by their own means, they should do it, even if it takes more time. With some help if necessary.
•Without any scientific basis, only through observation of a few neurological diseases like PSP, I have the impression that a specific program of intense gymnastics can slow down the disease progression in a significant way and is more effective the earlier the disease is detected.
Dear CC, it's so alarming when you go onto the next stage of this wicked disease and you just don't know what to do for the best. Ben has also started to choke more especially when in bed. Called Doctor to check for chest infection but nothing. Seems to be a collection of phlegm at the back of the throats that he can't clear. He has also lost a lot of weight even though he eats well in between coughing fits. This disease is torture for both sufferer and carer, I loathe what it has taken away from us.
Absolutely, that is what is happening here with Charles. Yes, loads of weight loss even though eating betqween coughing fits. I loathe what it has taken from us and will take in the future. I am trying so hard.
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