Anyone else have a really grumpy PSP partner or is it just me ? im just the wife and the carer but I don’t get spoken to for days sometimes I feel like saying I didn’t give it to you I’m getting to the point where enough is enough after 3 plus years of full time caring etc etc
mr Grumpy : Anyone else have a really grumpy... - PSP Association
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Dance1955
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One of the many sad things about PSP is that it eventually leaves most of those living with it unable to speak. When my husband first stopped talking to me I asked him why he wouldn’t answer my question and after a long while he said, ”I did answer you inside”. Your husband is the same man inside as the one you married, struggling to make himself understood but not able to. My husband stopped speaking several years before he died but every now and again he would unexpectedly come out with a clear word or two. We once met someone we hadn’t seen for years. On saying goodbye I said to Colin, I wish I could remember that woman’s name to with he responded speaking clearly her first and surname. He had a better memory than me even with PSP. Keep speaking to your husband as normal but without expecting a response. I’m sure he appreciates everything you do for him and probably hates what he is unintentially putting you through. Do you get any time to yourself? I had several hours a week when sitters would come in to give me a break. I would then spend that time with friends and come home and tell Colin everything I’d done, what everyone had said, in fact spoke to him as if he didn’t have PSP. He reacted to what I said in different ways and had a funny humming laugh if I said something that amused him. You need time for yourself. Carers are not super men and women even though those looking on think we are. We get frustrated, inpatient angry, worn out and if we don’t look after ourselves, burnt out. You could have many more years as a full time carer, I had 6, a lot less than some, so please get help, all carers need it.
Very best wishes.
XxxX
Oh NannaB, when I read your line of “ I did answer you on the inside “ it made my heart flip!! Could relate to those words so deeply.. It gave me a understanding of what hubby must of been thinking!!!
He hasn’t spoken at all verbally for nearly two years. My son had a Facebook memory pop up from 3 years ago and it was a video on it we heard hubby speak, broke our hearts he had a beautiful deep voice!!! Then you realise what you take for granted the only sounds we hear now are groaning,crying, and laughing but like I say, you don’t need to speak for someone to hear what you want to say!
Hi, I know it heartbreaking, isn't it!!!! I agree with every word NannaB has said. My husband too, didn't talk for a couple of years. Even before that, it was only in one word answers, if he bothered. I remember one time, screaming at him to answer my question, eventually I got the reply, "how many times do I have to tell you!" He thought he had spoken out aloud every time. Frustrating for both of us. Try other forms of communication. iPads have a lot of apps that help people speak. Or get a white board and get him to write, making sure he does it in huge letters. At the end Steve just did thumbs up for yes and pointing. This is the worst symptom of PSP, especially for you. Once, Steve could suddenly talk again, I asked him how it felt, not being able to speak, he said it just felt normal and didn't seem distressed about it at all.
I would agree with Bev as well, about getting help. You sound very tired. There is no shame in admitting you can't cope, in fact it's a sign of your strength. To give the care you want and need to do for your husband, is more than one person can cope with, including you!!!
One last thing, it is not a crime to shout at your husband. It never was and is perfectly normal, especially now.
Sending big hug and much love
Lots of love
Anne
It is not uncommon for theose suferring from PSP to become frustrated and angry. The carer can be the safe target. My Liz was fgret with others, but, quite often, as soon as they left the house she would turn the ire back on.
Most days were very hard going.
It was not until she was in the Nursing Home that she turned her ire on the staff, fro time to time.
She never used to be an angry person, indeed she was warm and caring and only once or twice have I ever seen outward anger before PSP developed.
It's hard to cope with. My mantra is, "It's the PSP not my Liz."
I'm sorry you are getting that treatment. Have you tried telling him how it makes you feel? Tht did sometimess work with Liz.
Best to you.
Kevin
Dear Dance
My husband is still able to talk - though always difficult to understand. He has been on antidepressants since diagnosis. if I have upset him he will ‘choose’ not to speak to me for days when I ask why he just shakes his head. Eventually when he starts talking to me again and I ask him why he has a standard response ‘ you know what you have done’ he will/can never elaborate so I am none the wiser what my transgression was.
My husband (PSP diagnosed 2013) started on antiPsychotic meds in December purely to try and help him sleep which is a huge challenge and we have not had this problem with him
Choosing not to speak since !! I hope I am not tempting fate!!
From being permanently grumpy / aggressive his mood has lightened and I see an occasional Smile which is wonderful. He asked me two weeks ago how I was ? It has been more than 5 years since he has shown any interest or care for me it was hugely emotional !! Sleep however remains a huge challenge but the glimpses of my husband are wonderful.
We had been offered antiPsychotic medication years ago and I worried about the sedative effects so had always been wary .
I sound like I am on commission for the drug trade but the antiPsychotic medication has made more difference than absolutely anything else . Worth a thought/ request?
It is so demoralising having a partner who never expresses any care or thought or speaks Of course as Heady and NannaB have suggested it may just be that your husband can no longer communicate .
Sending love and hugs Tippy
I had this problem way before CBD was diagnosed! Hubby used to read books till all hours and never say a word to me!
Probably why it is difficult for me to put a date to the start of his decline!
Use this forum to have a big rant! We understand! And you will get it off your chest and get back to your husband with more good feeling.
Hubby and I were not very demonstrative before CBD, but I found that a touch, a kiss on the head, etc did improve things.
I know! When you both feel grumpy it is hard to do! Start - and see if it helps!
We spent a very relaxed holiday together at home just after our final major row! I gave myself a quiet talking to and put my feelings behind me, as I began to feel his time was getting short!
I was right and now am relieved I did it!
Take care of yourself, try and arrange some respite time!
Hugs
Jen xxx
Jen
Only last night I mentioned to someone that my husband spent hours reading and never spoke to me! So very like you and hubby. I have no real idea when it all started. Weird that we think about things later trying to put the pieces of the jigsaw together?
Hope you are well?
Marie x
Thanks Marie. OK. Battling with a sore shoulder and lots of heavy stuff I would like to do! Am learning to listen to my body and restrain myself!!
Thinking back is part of the puzzle-solving, and has a lot to with grief recovery! Or so I have been told.
Never asked my hubby why he was so insular! Can understand him better now! He had a lonely upbringing, losing his mum, then brother adopted, and father remarried postwar - neither parent empathetic. Now I think too he was autistic! Who wouldnt be after his childhood! Have 3 grandkids with "problems" all bright, 3 others very clever, and find 1 of my boys accepts he has autistic traits. Father to grandkids with problems was always 'my square peg'! He still is, can't handle his children and is a brilliant programmer.
Life was different when I raised my kids! So I got on with it. Now psychiatrists put labels on them and you can't smack them if they are 'naughty'!
Hugs
Jen xxx
Jen I didn't realise it was part of the grieving process but it makes sense, as we all drive ourselves mad trying to understand.
You sound like you have your hands full. Not sure if that's good or bad. Make sure you take care of that shoulder. The work will wait for you!
Marie x
I like your analogy of putting the pieces of puzzle together. I am going on 2 years since the loss of my husband and I find myself doing that a lot. I consider it a breakthrough when I get a piece to fit!
Jan so do I. I keep thinking of what happened and discovering things I hadn't associated with PSP or MSA. Now bit by bit things which I didn't understand are starting to make sense. It really is like trying to do a jigsaw. I get very excited when another piece fits! Maybe I will one day have most of the jigsaw done?
Hope you are well Jan?
Marie x
Funny you should mention the reading issue Jen, Ben used to hide behind books for a good while before diagnosis, he had been showing signs of depression which I had put down to pressures of work. I realise now it was first symptoms of psp and he was beiginning to switch off and avoiding social situations, had many a row about it but he just couldn't change his behaviour. Terrible disease in every way.
Kate xx
Thanks Jen for your kind words I had the same for 8/10 years of moods before the diagnosis just makes you wonder how long the thing has been there
How are you now it must’ve been hard for you my friend.
💕
Understanding now did not help me much during my marriage! Am learning to live with it.
Watch one of my boys and can see exactly the same happening. Though I think they talk more than we did.
Hugs
Jen xxx
I so often say to people that the worst thing is the lack of communication.It makes me so lonely.We used to talk all the time but now there is hardly a word and often not even a nod or a head shake.I feel I could burst with frustration some days.Also we have had a lot of falls this week and I am scared of how I am meant to cope.You feel quite alone with this as the doctors seem to help so little.I am seeing a counsellor from the carers support group in a few weeks to try to help with my grief and frustration.Right now,a few weeks seems a long way off.I need to dig myself out of this hole but it is hard for us carers,so hard.
Dear Dance1955
My Husband's speech is now virtually non existent. He too starts a sentence, gets so far and peters out, and does this several times.
Having seen SLT last month she gave us a sheet of letters and basic words. Subsequently I've prepared several sheets of basic sentences with Y/N responses and we are now using this more frequently.
I agree the lack of communication is one of the most frustrating aspects of PSP. However he did tell me he loved me the other night, which was the first time for ages.
So, all we can do is keep on keeping on!
Anne
Thank you Anne how do we keep doing this and then I think how will it be when I don’t have to do this what will I do then
We have to be strong either way and try and make the best of it don’t we 💞💞
Hi Dance1955, NannaB is spot on with her response so I'm not going to try to expand on that. PSP completely took away my husband's thought processing very early on in the disease making it impossible for him to join in any conversation or indeed even instigate a conversation. He knew what he wanted to say but couldn't get it in any order to articulate it. Sadly, PSP even took away his ability to write early on so communication that way was zero. He was totally unable to follow the simplest instruction, which made things like physio and normal day to day tasks almost impossible. I watched a very capable man become totally dependent on me. On many occasions I saw fear in his face when he was desperately trying to work out what was happening to him. one thing I am certain of is that he enjoyed being included in everything and that was the case until 3 weeks before he died.
You don't mention whether you get any respite; there are no magic wands to change your husband's symptoms but I found that getting out regularly, even if just for coffee with a friend, lightened the load. Even having friends in always brought a refreshing normality to the day, even though life was anything but normal. We are all stronger than we think and I often look back and think how the heck did I get through that, but I am also very conscious of the fact that there is a very fine line between coping and going under and its recognising when you have reached that point, or ideally seeking help bore you get to that point.
Don't forget that the man you love is still in there even though he may have become a stranger. As for the days of silence, the silence in my house now is deafening. I wouldn't wish R back for him to endure that suffering again but oh how I would give anything to look at him sitting in his chair, eyes closed and to just hear his gentle breathing. Best wishes to you both, HilsandR
Oh HilsandR thank you thank you I know the day will come when I’ll be saying the same as you I get what you’re saying and yes I do get respite and I’m very lucky that way I guess we do so much for them it’s hard to be ignored my husband can’t walk or write or use an I pad I just have to be happy I still got him hey 💞
Hi Dance1955, I found the lack of communication the hardest thing to deal with and as you rightly say, we do everything for them for what appears to be a thankless task. I guess that's the true meaning of unconditional love. Interpreting their needs when communication is at zero is so stressful, I used to be terrified that I had missed something obvious. It really is a one-way street and all I can say is just keep talking to him about nothing and everything, reminisce, hold his hand, give him lots of cuddles. He may not respond but I am sure inwardly he will feel joy from those things and one day you will look back and find some peace in your your grief knowing that he will have felt your love until the end. Remember also that none of us were trained to care for someone with this hideous disease and we mostly stumble along learning as we go, sometimes getting it right, other times getting it wrong. I am pleased that you are getting some respite and I reckon you are doing a fab job in caring for your husband, we just don't recognise that whilst we are in the thick of it. I think my epitaph will read 'how the heck did I do that'. HilsandR. x
Hi Dance1955!
In the course for caregivers we have been told that it is common for the neurological patient to discharge his frustrations, rages and fears about the main caregiver.
Patience.
Hug and luck.
Luis
I am so sorry to hear about your experience, which I totally empathise with. My mother, with PSP, has become quite cruel. The day after I arrived in Rome to visit her from London told me that she could not bear me anymore! She says mean words to her carer and is always angry, jelous and also paranoid. The illness took her empathy out of her capacities and it's truly hard to be beside her when she is like that. Even though I have learnt not to take it personally, it is always hard not to. Sometimes I am able to reply to a mean comment with something along the lines of "it must be so horrible to have an illness that has taken everything away from you. No wonder you cannot stand it. You cannot stand the PSP, I know" and sometimes she would reply with something like " yes, that last one you said".
Bless you.
Sending waves of empathy and wishes of continuous strength to you and your husband.
Thank you Zibo fo your kind words I guess some days are better than others and we should try and shut the door in our heads and not think about the bad days hard though eh !
Great coping tip. My mom with CBD also displays jealousy, paranoia, bossy and other unsavory characteristics. She is in a home so I don’t deal with the anger as much, but it gets harder and harder to visit her when her behavior is unpalatable. I’ve just gotten up and left when she has been particularity difficult, mean, or cruel — but I like your way of handling a mean comment. I will try it out at the next opportunity.
Ha ha I’m a bit wicked at times gets me through though not many takers hey when your dealing with a PSP relative you certainly find out who your friends are 🤔
Dear Ettavb,
thank you for your reply.
I so understand about the getting up and leave! In fact, for the very first time, I am not even feeling like returning to Rome to see her.
And yet, as people with PSP struggle to come out of their PSP shell and hate being locked there, also do we, their close family, struggle to see them beyond the PSP and its horrid symptoms. It's natural, I guess.
And yet we are a step removed and so we can, with reflection, with support, with time, each at our own pace (I have had many unempathic reactive response to my mum and always regreatted them!), we can find wiser ways to respond to them in those very difficult moments.
In some ways, my mother is still teaching me to grow.
I say this with tears in my eyes.
It's tough.
Hi again Dance!
I'm sorry PSP has entered your family.
During the 7 years in which we lived with PSP I have been collecting our own experiences and that of other members of the chat to offer this notes as a suggestion to patients and caregivers.
I am not a phisicyan. My studies have a relationship with Physics, Chemistry and the Environment. The information about our experiences with PSP is made with good will and my best technical criteria that I have been able to contribute, thinking above all give suggestions to caregivers who have, exception made of PSP associations chats and their support, to face this unknown disease.
Wishing the best for you and your family and if the document with our experiences and our solutions can be useful, do not hesitate to let me know to send it by private mail through this chat.
Hug and luck.
Luis
Thank you Luis any information would be helpful my husband is not and hasn’t been mobile for years so I guess I’m tired of all the lifting and transferring just as much as everything else which makes it harder to tolerate
I found the lack of being able to communicate the very worst part of PSP but kept trying different ways to help and understand Ben as the disease progressed. He was always fully aware of what was going on and what was being said and it used to break my heart when he so desperately wanted yo say something but it was impossible to decipher what he was trying to convey. As others have said, try to arrange regular breaks away from caring otherwise you will break and that's not good for you or him. In a funny way I found caring very rewarding as I was the only one who really understood him and was therefore the most suitable person to take care of him. However I did benefit from time away and doing normal stuff, so important. Try to stay strong and keep reminding yourself it's not him but his horrible, wicked disease. Non of us know if, or when illness will strike and will need help.
Love a Kate xx
Thanks Kate what a lucky man Ben was to have you I hope I can be as good a carer as you you’re right it is a horrible wicked desease and I have never known anything like it in my whole life no one deserves this god bless you 💜
my husband hasn't been able to speak a sentence for a few years now.
He sometimes tries to mouth the word, no or yes but very rarely.
One day, awhile ago now! he was looking straight at me, I could see something was wrong or as if he wanted to say something. I went through all the usual things, asking if he wanted something to eat or drink or did he have a pain and then he just said " Sorry".............my heart was broken.....
X
It has taken me six years to finally feel I can manage living day to day with a stranger. I look back and read my journal to only realize there is no easy way to cope with CBD or PSP. Doctors, family and friends try to help but how does one ever really convey the day to day frustrations of this terrible afflication?
Joy and love disappeared as our 60 year relationship got lost in Joe’s mind.
His speech became mumble jumble, his touch, non-existent. He became a stranger, and I had to face it. I spent 45 days in a nursing home for Re-hab when I fell and fractured my pelvis in early 2017. I fought back to recover and walk again because I knew he needed me. However, I swore he will never go to a nursing home.
We now have 24/7 home care and I can monitor and manage his medications, his diet, his exercise.
I had to mentally create a new environment and I did it my naming our home “The Charleston Manor”. (Named after my father!)
I am the purchasing and payroll manager; chef and dietician and drug administer.
We have four employees, two females work 8am to 8pm. One, M-F and the other on weekends, and two men, evenings, same days. The men give Joe his daily shower and grooming. The women get him ready for bed. The four are responsible for only being with Joe. They are always close by as he does still walk on his own.
I am also the driver for doctors visits and exercise program at nearby facility.
We started this in August 2018 when a sciatica attack on the side of my surgery convinced me I had to throw the towel in and get help.
What an awakening it has been. I lost my privacy and I try my best to accommodate our helpers by feeding them and respecting them for the help they provide for Joe. They do no chores except handle his care.
The cost for this care is $11,000 a month. The nursing facility is over $14,000 a month and the savings is not why he is here at home. I know what happens at these places and I was in one of the best in our area.
We are not wealthy. Our pensions and S/S and personal savings cover it for now.
So, here we are at the “Charleston Manor” !
I count my blessings every morning for the chance to make sure my Joe is well cared for.
I go out for three hours at a time, sometimes just to a local park to sit in the car and listen to meditation tapes or make a phone call. Joe gets upset when he hears me on the phone.
His anger issues reached the high point last week as he strikes out and hits and curses when he is told to do something.. e.g. sit down, use urinal.
, brush teeth, get changed. Very unlike him as he was always a kind and mild mannered man.
He was given 125mg Depakote once a day. He is on it for 9 days and it seems to help for now.
He also takes seroquel 25mg at bedtime for hallucinations.
Three years ago he no longer recognized me as his wife.
Joe is sad and angry most days and it is so hard to help him as he resists all care. Everything is an effort and it wears us down. He will not cooperate in any way and at times I have to control my emotions, There are times I just can’t. I then suffer the guilt feelings.
We had a pet gerbil once when the boys were young. There was a wheel it ran around and around on.
Many days, I feel like that gerbil.
God Bless anyone who is reading this.
Reach out to me if you need to. I have been here for sometime but I rarely post.
Sincerely,
Rita
Dance1955 in reply to
Hi Rita you are amazing remember that we all are 👏
in reply to
Hi, Rita---I so empathize with your situation. I am almost at the point where I will need to hire 24/7 help to keep my health and sanity. There are no decent facilities in our area. Husband was narcissistic before diagnosis and we were on the brink of divorce when he started showing PD-like symptoms. It is hard to know what is disease-related and what is personality disorder. How does one go about finding quality care-givers, especially strong men who can physically handle him at this stage where he can still walk "sort of" and thinks he can still do all kinds of things he really can no longer do. The dementia and impulsivity are so hard to deal with! I am afraid I also will injure myself and already have sore shoulders, aching back, etc. Did you get references from social workers, agencies, hospice, etc? We have 2 hours a week of CNA assistance through hospice and about 8 of home health through the Veterans Assistance Services. What was your strategy for finding good help. We have long-term care insurance which will help cover expenses.
Thank you Lynda love your posts too 💕shame we can’t all get together and have a few drinks some party that would be 💃
Hi. You have had some amazing replies. I hope they have helped. My husband has CBD and I get more grunts and groans than sentences nowadays but this afternoon he was not willing to do what I was asking him to do and he came out with a very clear sentence 'Do you know you have a very bad attitude ? '. I could have throttled him. Luckily he was in a safe place so I walked away and planted two plants in the garden and then came back able to cope again somehow. All the best AliBee
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