Do you think that my husband still has cognitive thinking? I was telling my daughter that I don’t think he understands much. She said that is not true he still knows what’s going on.
My husband can’t walk without his walker, or get up from a setting position with out help. He drags his right leg and his eye sight is bad. He doesn’t talk much and when he does it’s sometimes hard to understand him.
I wish I knew what stage he is in and if he knows what’s going on around him.
Hi Penny, Don't ignore him because he shows no reaction!
Your daughter could well be right and he could still have understanding. What may well have changed is his brain's ability to process at its usual rate, so his answers, reactions and responses may be slower!
What is important is that you make time for that interaction. Show him you still care. Tell him what has happened to you during the day. Tell him a funny story. Involve him in your conversation, whether you get a reaction or not.
I know all too well how easy it is to brush off the problems when they annoy you! I was guilty of that for a long time. Then I gave myself a good talking to and changed my attitude towards him. I gave him more time and tried not to react to the annoyance when I didn't get answers or response - all of this was relatively "normal" during our marriage even before the beginning of his illness and deterioration!
During his last 6 months we didn't do very much but just sat together in a happy silence with an occasional comment. I found a chocolate button or 2 would sweeten the time. I knew I was giving him something he enjoyed and he was getting my attention and affection.
So yes - I do know how frustrated you feel! I hope you get some more help from your daughter too. She will not have that same frustration. She will just be trying to find where her dad has gone and be trying to pull him back. He is still in there somewhere, no doubt trying to get out.
Big hug
Jen XXX
Thank you so much, I have been trying to be a nicer wife, and he loves ice cream so I do try and give him that even thought he clears his throat a lot after eating it. I will try and remember to involve him more in conversations. Hugs to you.
On a deeper level he's still there. It takes much longer to process things... be patient and try to keep the conversations simple. Continue with the ice cream...
Tim x
What a great reply ..all so true
I agree. Definitely engage him as much as possible. I know I brought my ex’s friend on one of our visits and the friend talked to me the whole time and I desperately tried to include my ex......to no avail
Last time I bring someone on one of my visits to my ex- it did more harm- he’s a smart man and I know that he knew he was being ignored by his friend
And yes, silence in the same room with your loved one can bring peace to them also
It’s gut wrenching hard- believe me, “we all understand”
I agree with Jen. Processing time slows down and combined with increasing communication difficulties the effort needed for your husband to express his needs will be enormous. Time is key here, my husband took a long time to plan any response we developed a system where he would raise a finger/ hand to show he was planning/thinking - this helped me slow down and not rush him.
A Speech and language therapist may well be able to help in this area. I do understand how frustrating this must be for both of you.
Love Tippy
My husband would not be able to remember to hold his hand or finger up. But I am going try to be more patient. Thank you
That's a good tip about holding a finger up Tippy. Will suggest that to my mum.
Unless he has developed dementia he knows what is going on.
As for stage this is a general list of what to expect:
brainsupportnetwork.org/fou...
He also has FTD, along with psp and aphasia. Thanks.
Being on site I think you know what is going on. I would trust your judgment.
FTD is a lesser evil where the many dementias are concerned. It's equally frustrating and sometimes embarrassing for the patient as it is for the caregiver and other loved ones. Writing from my own experience.
Tim x
Good day! This guide is very helpful. It at least lists some of the symptoms so one can assess the stage of the PSP. I had a general idea on the stages but, this makes it easier to understand. Thanks for sharing@
Hi Penny. My thoughts are... on some level our loved ones hear us. Compliments are always appreciated no matten what stage of life we are in. Even on mom's worst hair days l found compliments to share... l think the vibration of our voices are felt. I continued giving mom foot massages throughout her time here on earth. Touch is so important even if you hold his hand for a little while each day & just tell him a Dad Joke. (My son is big on dad jokes - personally l don't think they are funny)... but smiles are extremely helpful for everyone. Sending understanding hugs... Granni B
Thank you.
Mum generally still knew what was going on but couldn't follow group conversations and her ability to respond was poor. But she loved to go to the park and watch/hear the children play and see the dog walkers. Her eyesight was poor but I used to describe the scene to her. I used to prattle away to her and I think she found that comforting and touch was very important to her. She loved hugs and transfers were used as an excuse to get a hug in, not just from me but from the carers as well. It's a tough aspect of PSP to deal with. I hope you are getting help and get some you time to yourself. It will help you be more resilient and deal with things in a more positive way. Hugs to you. xxx
Hi Penny, My mum sounds like she's at a similar stage to your husband. She does understand everything but sometimes processes it in an odd way and is clearly having problems with her memory. Have learnt not to say "We've discussed this before" but just answer the question/reply to the comment again. I try not to overload the days I do see her as it just wears her out.
Try and ingore any non-reactions, which, unfortunately, will increase. As Mum said to my children pre-lockdown, "I'm smiling on the inside."
I too was vexed by this question as my wife neared the end. She had not spoken for months but still followed me and people with her eyes. Sat with her and asked her if she still liked me because I felt that I had often been too hard on her. After repeating this question many times, in a weak but clear voice, she said she loved me. So yes I believe that PSP sufferers are aware.
Hi Pen
I agree with all that Jen and Tippy have said.
Chris certainly had cognative function right to the end. His lovely carers and I used to joke and tease him in the mornings and it always brought a grin. He wanted me to sit with him in the afternoons whilst he watched/listened to repeats of repeats which he enjoyed. Our daughter bought him boxed sets of his favourite comedy series which used to make him chuckle.
I think one of the saddest things about PSP is that the patient is only too aware of what is happening to them and totally unable to do anything about it.
Keep on keeping on
Hugs
Anne
One can’t tell from physical appearance and physical abilities how someone’s cognitive function is. That goes for both children and adults with neurological issues.
As my mother (PSP/CBD/FTD) was gradually losing her ability to speak, she let me know she knew a lot more and could understand a lot more than she appeared to. While she can’t follow conversations on TV, she can read people really well and is very perceptive about them—for example, she told me that one caregiver was insincere. One doctor says she has moderate dementia. While she might not remember certain events and details, has difficulty forming new habits, is increasingly nonverbal and can’t reliably answer yes or no, she is very aware, enjoys getting out of the house, watching TV, and having her grandchildren around. She laughs at jokes. She does not have any difficulty recognizing people so it’s silly that relatives keep leaning over her and asking, Do you remember me? and introducing themselves.
Social stimulation and connectedness count for a lot when it comes to quality of life (for both of you), so it is worth engaging with your husband and keeping him entertained. His thinking might be fairly well preserved, but he has very limited ways of expressing himself.
Thank you he does love spending time with the grandkids.
My husband passed away jut two weeks ago from this hideous disease. I beat myself up daily over the times I lost my temper or .patience waiting for my poor husband to answer if he wanted a drink or something to eat. I would always apologize afterward and tell him I was not angry at him, it was just my fatigue and frustration, and that I loved him. I know how hard it is. I would remind my self how tired and frustrated and angry he must have been trying desperately to speak and the words just didn't come. I think I will always feel guilt over this.
I’m so sorry for you loss.
Same here, about the guilt, and my sweetheart died three years ago. It's impossible to forgive myself for my failings. I was impatient and cranky, many, many times, and folks still tell me what an angel I was - they didn't see the rest. Sometimes I was an angel, too, to be fair. I bet you were as well. Please don't let the memories of your mistakes overwhelm those of the good times and the sacrifices you made. That's a rut in your thought processes you don't want to make. Be kind to yourself. Focus on the positive memories. Forgive yourself. Take care of yourself, gently.
Love and peace, ec
Ditto!
Thank you for your kindness. I do have people telling me how good I was, and what good care I took of him. He even told me, "You take such good care of me." in one of the last days before he passed. I tell myself, I did the best I could. I know I tried.
I too have struggled badly with guilt over the six months since my darling died.Everyone tells me how wonderful I was but the times I was cross still eats at me.I got some counselling which I would recommend to you as you can talk to them about anything.Exhaustion turns us into a sad version of our normal selves.Now I can remember the happier times and the man he was before this ghastly illness leeches him away from me.Be kind to yourself xxx
I have been thinking about counseling. Thank you for your suggestion.
My husband’s processing time has gotten longer as time has passed. He usually repeats what we say or at least the last word we said. He does better with yes or no answers. It is difficult sometimes waiting for him to process what we said and sometimes after waiting a while we repeat it again one time. There are times when he surprises us and answers in a way that lets us know he is still in there. This has helped us to slow down and appreciate the little things, like his tongue moving to answer yes or no, or actually hearing his voice. We have gotten really good at watching his tongue for his answers. His voice is very soft. Hang in there. It’s not easy and you are not alone.
Those symptoms are all common for PSP patients. I suggest you talk with your Dr. There is information on Google (PSP) that will enlighten you. My husband no longer walks without assistance; cannot get out of chairs; palsy of the eyes is progressing; slow in speech; water has to be thickened; he is prone to choking on food. He is now entering advanced stage.
Make yourself as knowledgeable as possible. This will help you deal with situations as they arise. Good luck.
Worried
CBD
General Anesthesia for surgery can cause or worsen cognitive problems
Finally, quiet, calm and peaceful
