Feeling so mean. We went out for lunch with friends and, as usual, my beloved chose to sit at the end of the table. With hearing issues I can understand why he does this.
He spent the whole meal with his elbow on the table cupping his head in his hand, thus blocking any interaction with any of our friends.
This is just not like the man I knew him to be, and on the way home I pointed out his behaviour.
He said he wasn't even aware he was doing it. Now that is a bit scary!
He doesn't mind me talking to him about these things, but I feel so mean. I still believe he has the capacity to be aware of these social situations.
Giving him lots of love now to make up for my reaction.
Don't want this to be the new norm.
Just wanted to offload and confess my horribleness!
Juliet
Written by
JCRy
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Feel free to vent.
He might sit with his head in his hands because he’s tired. Everything is exhausting to do.
It's just that thing where we get it wrong because we aren't perfect.
However it might be that you were doing what most of us sometimes do... We respond to behaviour as if it was the old loved one we are talking too. That habit is hard to break.
One of the things lost with PSP is social awareness and the social skills which go with it.
I sometimes caught myself doing that habitual response. It's hard to be mindful all of the time.
My mum has PSP and we are still learning with what is changing in her and what is the illness.
I have been inpatient at times with my mum with things that she can not help. I now know what is the illness and what isn’t - but it can still be difficult to tell sometimes as it’s all so new to us.
We do our absolute best but we are all only human at the end of the day ❤️
Nobody should beat themselves up over any of this - how the heck are we supposed to work out what is what when the symptoms often baffle the experts. Every person on this forum will be on a unique journey because as we all know, PSP and the like is never a one size fits all. I reckon there is a symptom with these diseases that will fit every letter of the alphabet, obviously not everyone will get all. So, starting with A, apathy, B, breathing difficulties etc, C, cramps and so on. If we all contributed to a symptom fitting a letter then maybe an A-Z of possible symptoms could be used on the PSP Association website, giving carers and sufferers alike a wider insight into the possible symptoms thus taking away some of the guesswork and maybe lessen the irritation we feel towards our loved ones, which in turn may lessen the guilt. Their handbook does of course cover some of the symptoms but there are plenty more that are not covered because I doubt that the wide range of symptoms has ever been catalogued. For example, nasal drip, my husband has suffered this throughout the duration of his illness, the strands of thick mucous hang from his nose and his mealtimes are constantly interrupted with reaching for tissues and wiping or not catching in time and dripping into his food. I am keeping the tissues companies in business. That symptom used to make me so mad and embarrassed when we were out because I didn't relate it to the disease. This is a PSP symptom as an ENT examination proved healthy nasal passages. We read about throat mucous but rarely about heavy, persistent nasal mucous being part of the illness, but not everyone gets this. I am sure others have symptoms that are not included in the generic list. Anyway, I'm rambling on but just a thought. Hils.
Hi Juliet, sadly that became the norm for my husband very early In the disease. We would be having dinner with friends of many years, people he knew inside out, but he lost the ability to interact and when he did he would only make eye contact with me. It used to make me so cross as obviously at the time although I knew something was not right we had not then had a diagnosis. These days he cannot put his thoughts together enough to string a sentence together nor process what is being said but at least everyone is aware now and they make allowances - I still make sure he is included in these social events. Another new thing is his intolerance of noise, anything from me putting the pots and pans away to the squeals of delight from our little granddaughter, the agitation sets in. Just when you think PSP can't throw another spanner in the works, it does! Just something else for us to accept cos it's not their fault. Just keep enjoying the meals with friends for as long as you can but brief your friends so that they are aware that what they may perceive as being rude is in fact a symptom. It's such a struggle isn't it? Wishing you the best. HilsandR
My husband did this too. Pre PSP he was very sociable. Then he lost a lot of social awareness. I regret that I used to get angry pre diagnosis. Then we were very open with every one that its PSP and I found every one was fine about it. He sat with his head in his hands a lot !!!
Yes agree with what has been said, George hates noise, people come and speak to him, he doesn’t respond, I always say he is not being rude it’s the psp, pre psp you couldn’t stop him talking. Not being rude its the psp. Yvonne xxxx
I too, struggle with the emotional response, sorting out what is from the disease and what isn't. I feel like holding on to the "old him," but there's clearly a learning curve in interacting with the person, but not blaming the person for what is caused by the disease. I catch myself all the time getting irritated at tuning out/rudeness/apathy, and I want him to fight it.
Juliet, you are not horrible, you are just figuring a new situation out! I had so many "little" conflicts with hubby until we got a diagnosis. I pushed less then. Ok maybe you could say I "picked my battles"
I had to read Hils' response twice because word for word, that was my experience with hubby!!
You're a good person - don't beat yourself up. (Anyway Kevin has the stick
We have had a good talk about the situation and are working our way through together. What a relief it is that our 39 years of marriage have been solid and built on a loving foundation. It makes the challenges far less depressing, and there is always hope for a new and brighter day tomorrow.
I can relate, as well. Sooo much anger I have and its many times displaced. I always think if he were gone tomorrow, am I going to be able to forgive myself for those times of impatience.
Speaking of symptoms, I need to know if people with PSP ( I know they all present differently), are able to walk unassisted, fall or pull back on person who might be helping tbem walk, lean to one side or another some days when walking and sitting, have trouble bending knees to sit and therefore just fall back in chairs or on toilet.
My mum does all of the walking things you mention. She’s unable to walk unaided now always has to be helped up from chair and I hold both her hands and I walk backwards leading her. A lot of the time she pulls to one side others she pulls backwards. ( luckily I’m quite strong ) Sitting down on chair or loo I now have to put my hand on small of her back to guide her down. My Mum has CBD though not PSP. Hope this helps you.
Hi yes my husband leans on me a lot and to the left and falls on to toilet seats and chairs I am looking at a walker for him it's called a u step 2 walker you can google it it's designed for nuroligical conditions such as PSP
Yes. Chris did all that. It varied. Sometimes, when my back was turned, he would get up and walk ! He also " froze " halfway to sitting on toilet or walking. I found singing a tune got him moving.
Yes it's horrible you're not horrible I find it very stressful eating out with my husband he is not the same anymore I got an award and went to a special dinner of course I took him but I didn't expect him to take the piece of steak of his mouth and put it back in the plate because it was a bit gristly 🙄OMG I can laugh now but at the time I wanted the ground to open up at the time I didn't know he had PSP
Another time we were somewhere and he took his teeth out to clean them
Any way we can't put a badge on them
I sometimes wish there were something to make people aware and not look at them 😬
Unfortunately I found that there was much frustration, anger and guilt as a caregiver for my wife. I just wanted to keep her safe and comfortable, but often because of her impulsive nature with this disease, she would do what I thought was the complete opposite. That is why I found this forum to be so helpful. I found that I was not alone, and that others struggled with similar isssues.
We know you love your husband dearly and want the best for him.
I have struggled with this - husband a long-time CBD sufferer-- and came to the conclusion that I just have to accept who he is now and focus on the Big Picture, which is that I want his remaining time with me to be as loving and non confrontational as possible. Have mentioned in another post that I found joining an Alzheimer's support group two years ago helpful (there are no CBD support groups that I know of, regionally) and learned there that "manners are the first thing to go." I admit that I still wish he would "fight" the decline more, but then remember that sometimes for him, just getting out of a chair and walking to the next room is tiring.
Keep making good memories and let the other things disappear from your view, if you can.
Ian has been disabled through other issues for a number of years, so I understand exactly what you are saying. Living a day at a time is certainly good enough for me, having seen him at death's door three years ago, literally.
Since then we have tried to make the most of our time together.
Dear JCRy - You are definitely are not mean or horrible as everyone has pointed out. These are stressful times as we learn what is normal and or what the new normal is.
My husband and I have wonderful friends . . . but at times I find my mind just goes blank with the conversation . . . lucky for me that my hubby is a real talker and keep things going easily. But now my friends are questioning if I am okay because I was so silent during our visit. It makes me feel bad when I am questioned . . . I wish I was the same old chatter box but I believe those days are gone. I still enjoy our visits and I can only imagine your husband does too. Sending you and hubby HUGS - Granni B
Thanks, Granni B. It is good to hear it from your point of view. I know we need to let more friends in on his diagnosis. Ian has been hesitant to do this, as he doesn't like the fuss, but that time is fast approaching.
I am speaking from the view point of someone that has not been diagnosed PSP by a doctor. I do believe I have it because my mom had it and for two years I have been falling backward and every which way a person can fall plus many other symtems. I'll be seeing a doctor at the end of this month . . . I really did not want to know and I am a great procrastinator . . . I have read that only 1% - 5% of PSP cases are genetic . . . since I am a mom & granni I finally realized I need to get checked out for my family's sake. I will let you know if it is not PSP - but I think my feeling in the above post are accurate either way. Sending more hugs - Granni B
We have sung songs while walking, but for now counting seems to work the best. We get "ready/steady"first. I will sharply state the number of steps I think it will take and Jack steps forward counting outloud . it more often and than not goes smoothly. if we come to a turn, I prompt him to take a "long left" or a "long right. "I walk behind him and the gwalker holding the knotted ends of a strip of sheet wrapped around his middle to guide him and feel any waver in his step. My wrists suffer, too ~ IHe is so much larger than I . Forgive my messy text. I am on my iPad and it covers the print!? I'm typing blind and if I go back to fix something , it covers it up or the prdictive feature adds a word😆
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I feel like all I do is complain.
