lost

[twindles]

Hi everyone, i'm new to this site. My dad has had psp for 6 years, he is now very aggressive with my mother his main caregiver. I'm trying to explain constantly it's part of his condition but she's just in tears most of the time or losing her temper. Bernie

[Yvonneandgeorge]

Twindles is he taking antidepressants? My husband was like that as well but at the beginning, get the GP involved and social services, tell her to be strong there is help out there xxxxxx

[twindles in reply to Yvonneandgeorge]

He's taking antidepressants he's taking everything he's well looked after medically he's just so aggressive with my mother, she thinks it's personal against her.

[twindles in reply to twindles]

Apologies if i'm not using this site right i'm only learning, thanks for the reply. my name is Bernie

[easterncedar]

Hi, Bernie! You are using the site just right. Welcome.  It's hard to know how the disease is going to affect any one person. Some people get aggressive, some get apathetic, some stay themselves, for better or worse. One thing is true for all, the situation will not stay the same. I hope your mother can get some time for herself. Exhaustion and stress and grief do make it very hard for a carer to cope. We all, or mostly all, find ourselves losing our tempers too often.

Good for you to help. Do you live nearby? Good luck and best wishes, Easterncedar 

Some of us use our real names, some  of us stick to our sign in names.  Whatever you like, Bernie.  Welcome.

[jillannf6 in reply to easterncedar]

i agree ec with what u have said]

;llol jill

xxxx  welcome  bernie tot the site

[twindles in reply to jillannf6]

thanks x

[easterncedar in reply to jillannf6]

Hi, Jill!  How are you doing these days? Is spring in full swing for you? Listening to any good music?  I think of you often, and am always glad to see your smiling face! Lots of love, Ec  

[jillannf6 in reply to easterncedar]

hi ec

i am doing ok thanks  i \am still gooing to choir  and hsbr bn   e enjoying ella  fitzggerald again - she is greayt

ol jill

xxxxx

[jillannf6 in reply to jillannf6]

 the typing i s not hrgettinh any ebetter

[easterncedar in reply to jillannf6]

Your typing is great, Jill, don't worry about that. Ella Fitzgerald is fabulous, and you are reminding me that I need to listen to her more myself. I inherited a nice collection of vinyl, mostly jazz 78s. I need a turntable that will play them.

I used to sing in a choir, but can't manage the time these days.i hope my voice is till there when I can get back to it. I enjoyed it so much.

Keep on keeping on, Jill. Lots of love, ec

[jillannf6 in reply to easterncedar]

hi ec

thanks for ur reply

lol jill

xxxx

[easterncedar in reply to jillannf6]

Jill, much as I love EVERYONE on this site, I think it is your voice along with that of peterjones and shasha, judyj and myjual, that I value the most.  You keep me mindful of the things my guy, who can't communicate as well any more, may be experiencing.  And then you are such an interesting and positive person in your own right, I just plain admire you and enjoy whatever you have to say, every time!  Lots of love, Sarah

p.s. so where in Yorkshire are you from? town or country?may I ask you a bit about your childhood?

[jillannf6 in reply to easterncedar]

hi Sarah

i am from n.yorkshire Redcar in fact on the cold coast b y  the  north  sea  a[small town] but we moved inland  2 an even smaller town  in mid  62 to ge away from the  sea frets and fogs which made  m y mother's R.A  worse. 

 my dad worked as  a draughtsman at  a local steel works and took early retirement aged 57 ro so and wa s pleased tot do so;

 i went away to univercity in 1964 and never returned to live in Guisborough with my parents

[twindles in reply to easterncedar]

Hi easterncedar, thanks for the reply i found it's helping already just to know other people are in the same boat. i live 10 miles from mam but i see her everyday. We had a good day today. 

[easterncedar in reply to twindles]

Glad to hear you had a good day.  Psp can make you focus on small things, and often in a way that is very good.

[jillannf6 in reply to easterncedar]

love the photo ec

 jill

xxxx

[NannaB]

Hi Bernie,   Welcome to the site.  I'm sorry your dad is living with this distressing condition. Not all PSP sufferers are aggressive.  I have been fortunate in that my husband has never even spoken in anger during the last 6 years of his illness.  I wonder if your dad had a short fuse before PSP.  He certainly has reason to be frustrated and angry now but your mum shouldn't be on the other end of his aggression.  I'm sorry I have no words of wisdom to solve the problem, other than to say that as the disease progresses, he will be less able to show aggression, or any other emotion.  

Your mum will appreciate your support and I hope you live near enough to be able to give a reassuring hug, like the one I received from our son today when he left to go home.

Perhaps you could introduce your mum to this site.  It's a good place to open up and say how you really feel.

Best wishes.

X

[twindles in reply to NannaB]

Thanks NannaB. yes my dad did have a short fuse before this awful disease took over, but he was never violent. he's not verbally abusive because he can't form words at all now. I see mam every day, we had a good day today. Thanks x

[abirke]

Take him to the dr.  Even though it is a condition of PSP, there are ways to treat the symptom....for your mothers sake.

AVB

[twindles in reply to abirke]

We have taken him he has nurses visiting and doctors but we know more about the disease through research than they do. Thanksx

[Doglinton]

Welcome, Bernie,

My husband is never aggressive but is awkward and silent at times. I feel for your mother because, although I tell myself its PSP, it still feels personal and I get angry with him. Then he is remorseful and I feel guilty. I suspect this pattern is true for many. Even when we know things it doesn't always mean we can behave as we           " should" . Its very frightening and tiring for her. 

Is he verbally aggressive or also violent ?

Your doctor needs to know. Your mother must feel safe.

Let us know how things go.

love, Jean x

[twindles in reply to Doglinton]

Hi doglington, My dads not verbally aggresive anymore because he can't talk at all now. It's more pushing and lashing out. The doctors know thy're trying different drugs on a regular basis. We had a good day today. Thanksx

[Doglinton in reply to twindles]

Good. I can imagine how confusing and frustrating it is for your dad. Sometimes I feel like pushing my husband because he is so infuriating.  We need lots of control with this disease !!

love, Jean x

[jillannf6 in reply to Doglinton]

hi jean

i am always quiet when  eating as i would choke  if i started speaking our meals are taken in silence [ much 2 my partners chagrin]

 I'm  so lucky to still  be  able 2  eat most  foods too altho by preference i am a veggie hut love fis h and good quality chicken

ol jill

xxxx

[Doglinton in reply to jillannf6]

Yes. My husband is the same. Its hard because we used to talk a lot.

This  PSP teaches patience, doesn't it ?

You always lift my spirits, Jill, with your positive attitude. Long may it continue.

lots of love, Jean x

[Hidden]

Each day is a new challenge. I never know what to expect and most of the time he is responding to my frustration. I wish I could find just one day that doesn't contain fear, worry, helplessness....it is like waiting for something and never knowing what that something will be....I wake up, and it is there and I want the man I married back. I want his love and his heart that seems to be lost in the tangles of his mind. In a way, we are both lost.

[goldcap in reply to Hidden]

NE, my God what you wrote was so hauntingly beautiful...and so true.

I understand. Big hugs to you.

Jayne

[Hidden in reply to goldcap]

Thanks GC. New Day. Weather is crisp and we move ahead. Up only 3 times last night. Will not adjust to his new and very expensive lift chair.I will continue to try to get him to be more comfortable. Very stubborn. Always was about certain things.

[goldcap in reply to Hidden]

I actually sent the lift chair back as he never took to it. I did however find a " recovery" chair on line that is like a recliner on wheels. It's a pain to recline and the breaks are not perfect but it comes with a removable tray. It has arms and a high back. He loves it and will sit in it for hours watching all the political craziness going on here now. And it was cheap! If I had known he would take to it I would have spent more for a better model. I am glad you had s good day. I think anything new intimidates them. And something moving underneath and behind him freaked him out. Does it have zero gravity. That's supposed to be good for you. We have a mattress that does that. You would love it very restful and calming. I mean somebody should put it to good use right?

Take care, JGC

[Hidden in reply to goldcap]

interesting to hear how something moving may be the reason he does not like his chair. I feel he feels he has no control because it is remote and he cannot handle the buttons and I have to do it for him. I don't know...so much is confusing...today he was good at pt and ot and then had an accident and got all nasty. the mood swings are so frustrating and I get so annoyed at him and regret it so much afterwards. Someone is coming tomorrow for the first time to help out. I hope it works for him.

Thanks for caring and for your feedback

[goldcap in reply to Hidden]

No problem. The mercurial moods of PSP are of the hardest things to deal with-at least I think so. It is like they have the terrible twos, permanent PMS and menopause all rolled into one-Ha! It always amazes that they  do seem to lash out at the ones that do the most for them. Maybe it is feelings of frustration at not being in control like your chair/controller issue. I guess that's why they call it emotional incontinence. I do know medication has made a big difference. Had to take him to a geriatric psychiatrist. Forget antidepressants. Antipsychotics and antianxiety drugs are more effective. His family once accused me of trying to turn him into a Zombie. They will not spend anytime at all with him unsupervised and when they visit I swear it is like a scheduled visitation, in and out in a specific amount of time. Sad. Initially he only lost it on me. The first time in therapy the whole room went silent and they specialize in neurological patients. His brother once suggested I ,"try harder to not piss him off", and his doctor said," How bad could it possibly be?". They had no idea. Then he lost it in the office when I was trying to schedule an appointment for him and they found out. He was going through his arm twisting and turrets like cursing and shouting stage at the time. Everyone was horrified but me. I calmly disengaged from him and walked away leaving them to deal with it ( which they did poorly, I might add). I was so happy that he did it in front of them so they would not think it was me anymore. It will be good for both of you to have someone without any emotional investment in him to help care for him. Fingers crossed it goes well!

JG

 

[goldcap in reply to goldcap]

P. S. to Bernie: Have your mom read the above!

[Hidden in reply to goldcap]

hi...today was a good day...for the first time we had someone here to pay attention to Joe for 6 hours. I got out of the house for 3 and it was so good to get in the car and feel I was leaving him "safe"....I live with the constant fear that he will fall and get hurt again. The caretaker is coming again tomorrow and hopefully we can work out a schedule. It is not cheap and we settled on $25 an hour. There was a lot of resistance beforehand but our son was able to talk him down and convinced him that this will be good for him to try. We were invited to go to dinner tonight with a group we used to dine with every month but he refuses to go with them. He told me "those days are over for me, you go by yourself "...Sad, we are losing our contact with the outside world and we are only midway through this journey.

I am glad others were able to see what you are going through...don't reproach yourself...you are his lifeline. God Bless....

[goldcap in reply to Hidden]

I am so glad the carer worked out. I talked an old carer into returning and I have to pay him 25 an hour as well. He is worth is but we have had the 12-15 ones from services that were terrible. If he can still say what he said to you he is still ok to dine out with friends. You can tell him I said so. I husband can barely speak but I tell everyone that makes him a better listener! in the beginning he did not want anyone to see him the way he was. Then he realized it would not get better and now he cherishes people visiting and wants to dine out. Unfortunately, no one invites us anymore so I know how you feel. And when it is a couple's thing it is hard to be the odd one out. At least it was for me when I tried. Don't cut yourself off. I made that mistake and it is hard to turn back the clock. He gets upset when I leave sometimes but I come back with stories to tell and happy. My carer is taking care of a sick relative this month so I have been housebound except for his activities. I forgot how hard it was to not get a break,

Hope your situation works out better.

God bless you too!

[Hidden in reply to goldcap]

Whenever I read your replies I find myself all teary eyed and I realize I have made a valuable connection. I have always relied on my inner gut when I meet someone and you have ignited my heart. You are my new friend and I look to you for the guidance I know I will need. I do not want to burden you as you have enough going on but I can no longer do this alone. I feel so frayed and fear I am losing it. It is so hard for me to have a stranger in my home as we never had outside help and I hope he will stay. Here is my email address. Please contact me and I will give you my telephone number. 

[e-mail]

Heartfelt thanks

[vlh4444]

Welcome to the site Bernie.  Your poor Mum  - it is so hard to deal with. 

[PUTLAND]

Hi Bernie Welcome to the site. I am my husbands carer and I understand how your Mum feels its very hard.  I know its the disease but perhaps she could have a quiet word with your Dads doctor and they might prescribe medication. She is very lucky to have you by her side. Take care.

[twindles in reply to PUTLAND]

Hi Putland. Mams doctor is an idiot. We'll keep going till we get it sorted. Thanks x

[jillannf6]

i agree with   what has been said 

there is  frustration then there  is aggression and the 2 r not inter related at all. or anger which can b   a   symptom as well

other tha n that plz get a drs opinion

;lol jill

xxxx 

[twindles in reply to jillannf6]

Hi the more i read about the illness i think it's just the form of it that dad has. Hopefully it won't last .Thanksx

[ketchupman]

Things change so fast with PSP. Most seem to get to a state of reclusiveness and show no emotions and rarely speak.  I don't know which is worse.  How I miss my former bride.  But I know she still loves me and appreciates the things I do for her. 

Ketchupman

[Doglinton in reply to ketchupman]

Know exactly what you mean.

love, Jean x