Putting my foot in it seems to be the new normal

[CarlaL48]

I love my husband dearly. I feel it. I know it. I believe it. Then why do I take out my irritability on him?

The other day, he was directing me on the proper location of backyard sprinklers. As he sat on his scooter, he'd coach, "No, increase the distance at this angle, and decrease at this one."

I thought I'd followed his instruction, but the sprinkler was wetting the concrete thoroughly and little of the grass. Next he told me to adjust this and that.

Finally, I looked at him and said, "I hope I can be the supervisor one of these days instead of the grunt."

I know it hurt his feelings, because it also hurts him to watch me tackle almost all the manual labor around here -- so just when he feels he's contributing to a chore by advising me on lawn sprinkling, I snark at him.

The worst was a couple days back when I was helping him get from the shower stool to the transfer stool. He was telling me about something, but it made no sense. The words came out, but there was no logical progression from a to b to c in his point. As a result, I kept asking questions to clarify his story for myself. After another minute or so, his face screwed up and he whispered plaintively, "Sometimes you make me feel so stupid."

Those words struck my heart, so of course I cried and apologized, telling him I would never purposely hurt him, and promised to do better.

(This is Carla looking heavenward) "Do you hear that, Lord. I promised to do better, but I can't do it without you. Please give me strength and choose my words for me. Amen."

[shasha]

well said - but i who have psp also get short tempered ab]nd feel so bad when i screech at my darling husband fred

it does not happen often, thank the lord but i stll feel bad when i do.....

[CarlaL48 in reply to shasha]

Right, Shasha. The last person in the world we want to hurt is our beloved spouse. I guess we'll consider it a blessing that it doesn't happen often. I suspect the Lord is tapping His foot at us oh-so-flawed mortals when He watches our resolve go up in smoke, as if to say, "There! You've gone and done it again...but I love you anyway."

[peterjones in reply to shasha]

shasha\\how are you =====ok i hope\\ now you would not screech at poor old fred would you!!!!!! i would never have believed it a nice lady like you see you shasha give my regards to poor old fred and tell him you still love him despite the screeching mate see yer peter jones queenhslahd australia psp sufferer and quiet screecher

[shasha in reply to peterjones]

hi peter . thanks for the asvice and i will let fred know that i love him and always will desite what i may sY SOMETIMES - HE KNOWS THAT ANYWAY BUT I STILL TELL HIM EVERYDAY THAT I LOVE HIM

TAKE CARE LOVE FROM SHARON

[peterjones in reply to shasha]

shasha\\ thats really lovely mate im glad o hear it\\ what about all you married couples saying that to your partners with psp today

even if you do say it everyday make today special

and just say I LOVE YOU it does not cost anything

THANKS FOR THAT IN ADVANCE PETER JONES QUEENSLAND AUSTRALIA OLD ROMANTIC AND PSP SUFFERER

[Kathy]

Hi Carla,

Don't be too hard on yourself! Looking after someone with PSP is a tiring, frustrating and difficult task. You'd have to be a complete saint not to snap sometimes and I don't think any of us can claim to be that!

Take Care!

love

Kathy x

p.s. I'm sure your husband knows you love him!

[CarlaL48 in reply to Kathy]

Thanks, Kathy. I can't tell you how comforting it is to unburden my soul to people who really understand. You folks are terrific and, in my opinion, are headed toward sainthood.

And you take care also, sister.

XO

Carla

[mummybear]

Carla, we have all been there, your not alone and when your tired and frustrated it comes out loud, your hubby will understand if you explain why and you will have to take brakes on occasions because if you don't take respite you will get more frustrated, fortunately i have found my hubby wont remember what i say what with apathy anyway plus he never says anything about anything. So take a brake and enjoy hubby talking to you because it's awful when they say nothing?

[CarlaL48 in reply to mummybear]

Good advice, mummybear. Thank you.

You hit a heartstring when you said, "...it's awful when they say nothing." Yes, I'd be a constant puddle if/when that happens. Please know you've got a new friend here in this lovely community of friends.

God bless you, dear.

XO

Carla

[shasha in reply to mummybear]

SO TRUE - I AM ALREADY GETTING TOLD OFF FOR NOT ANSWERING WHEN I AM SPOKEN TO - I USUALY JUST nod

SO I MUST TRY HARDER TO SPEAK

[tenny36 in reply to mummybear]

hi Im Ann new to this site - my husband Bob is 65 yrs and had PSP for last 5 y ears - he knows who i am -friends and family by their voice. He can longer see much, no speech, unable to walk so his quality life is getting less. He cant read or watch much TV either. I get very lonely as not much left we can share together. The house is silent .....we have been married for 43 years and enjoyed many holidays together and after having 2 sons and 5 grandsons have our first grand daughter - who he cant see - breaks all our hearts - I am so sca red to what will happen next in this horrible illness. We have our nearest PSP support over 40 miles away and find friends dont visit so much now he cant speak so our (my) world seems to be getting smaller .........feel better to get that little moan off my chest....thanks for all being there xx

[carolinesimmons]

I think we've all been there to some degree or other. In looking for the "why" of our situation, I've found it better to just say "why not" and then try to find some good to come out of it. I am certainly learning patience. Before, I only had it with my small (under 10) grandchildren. Now I am better with everyone and everything. Do I still speak harshly on occasion? You bet. But it becomes an opportunity to speak of sorrow, regret and love to my husband while asking for forgiveness.

Caroline

[CarlaL48 in reply to carolinesimmons]

What a beautiful and blessed attitude, Caroline. I don't know how much patience this old broad can learn anymore, but turning an experience of guilt into "an opportunity to speak of sorrow, regret and love to my husband while asking for forgiveness" certainly creates a silk purse out of a sow's ear. Thank you, my friend.

XO

Carla

[SharonAB]

Dear CarlaL48,

If you don't laugh you cry....

Most of my home renovations have happened by default.

A girlfriend told me to go out to the letterbox everytime I became annoyed and frustrated with what was happening in my life. It worked for a day - probably visited it 30 times! The next day I went to work and reversed the car back into the garage for the evening. An accident happened. Missed the wall but knocked over that blasted letterbox down flat. I burst into tears. If anyone had walked past at the time would have thought I had well and truly lost the plot.

We now have a limestone and concrete letterbox 3 metres away from the driveway. Great to sit on.

Regards,

Alana - Western Australia

[CarlaL48 in reply to SharonAB]

What a vivid picture you paint, Alana. I'm chuckling at your story, all the while sympathizing with how you felt when that last straw broke the camel's back.

So now you have a great settee where you can go to count to ten when necessary.

XO

Carla (Arlington, TX)

[MaddyS]

I shout occasionally and it does upset hubby who then thinks he might be a burden. I tell him that I love him and that shouting is a human thing to do and as I am human I'm entitled to the occasional outburst - that made him grinn.

When the children were small and irritating, I used to put an empty jam jar into a strong bag and smash it against the wall at the back of the house. The loud bang releases tension. Bag is important, you do not want broken glass around the house.

Take care

[CarlaL48 in reply to MaddyS]

I'm frantically searching for bags strong enough to withstand the broken glass, Maddy. Thanks for the somewhat zany, but effective, idea.

There's almost nothing worse than a spouse feeling like he's a burden. Mine doesn't want me caring for him only out of sympathy. Of course, I do sympathize with him about this insidious disease, but he's still the man I fell in love with and whom I still love.

XO

Carla (Arlington, TX - home of the Dallas Cowboys)

[MaddyS in reply to CarlaL48]

a couple of strong plastic carrier bags is usually enough.

It always worked well. Good luck.

[NannaB]

Hi Carla, It is so difficult trying not to show someone you love how you really feel, when you are tired, exhausted and just plain fed up. My husband has never raised his voice to me in 42 years of marriage, so when I do it to him, I feel terrible aferwards.I was really cross last night after he managed to get to the bathroom without me knowing (a great achievement) but didn't use his bottle and missed the pan. I flipped as it was 11.30 pm and the last thing I felt like doing was cleaning the result. He kept saying he was sorry and I cried, apologised, told him I loved him and gave him a hug.....a big mistake. He put both arms round me and then started to fall backwards, pulling me with him. Forunately he was very near a wall so leant against that and I managed to pull him upright. We both ended up laughing and the clearing up didn't seem so bad.

I echo your prayer and say Amen.

Best wishes,

Nanna B

[CarlaL48 in reply to NannaB]

Oh, Nanna B, we're all operating from the same scripts, it seems. Dale (my hubby) must self-cath, so I have his supplies arranged on his nightstand, and some empty coffee cans on a step stool next to his side of the bed. Sometimes messes happen and I get mildly irritated because, after all, it's smelly, dirty work to empty and clean these receptacles under the best of circumstances. Most of the time I succeed in hiding this irritation, thus leaving a modicum of his dignity intact.

Glad you and hubby pulled out of your fall unscathed, and isn't it wonderful to be able to share a laugh?

XO

Carla

[Peter3]

Oh Boy everything written here I recognise. My husband doesn't say much these days and hasn't for a long time, but he does watch me a great deal when I am working near him and I'm sure part of it is frustration at not being able to anything help. He use to do more than his fair share in the home.

Occasionally he will decide to walk on his own to the bathroom or from his chair to the lounge door and it nearly always ends in disaster and breakages. Whilst I have never shouted at him, my tone of voice alters and he recognises this and has cried. This makes us both feel dreadful.

When these situations arise and once the clearing up has been completed, we don't blame each other we just say "That's the psp again". Psp is like a third person in this partnership and together we blame it for the mistakes it helps!

Sorry, I have to go my, husband wants to go to bed and he won't wait too long before trying to do it on his own. Late at night I don't want a pep moment.

Keep strong everyone, we are all on a tremendous, awful journey, both sufferers and carers together.

Peter3.

[CarlaL48 in reply to Peter3]

Peter, how clever to personify PSP. It is indeed like a third person -- an intrusive third person who demands almost constant attention.

I have to say again how blessed I was to find this site. I've posted a bit on the CurePSP.org site, but its membership isn't quite as active these days as this one. Thanks to all for helping to hold me up and make me feel like I belong. I'll try my darndest to return the favor.

Sleep tight, Peter. And God bless us everyone.

Love,

Carla

[peterjones]

to all who put questions and answers on this site my reply to sasha further back \\ i said make this a special day and tell your partner THAT YOU LOVE THEM BUT THAT GOES FOR CARERS LOVERS UNMARRIED EVERYBODY IT DOES NOT MATTER IF YOUR PARTNER CAN ANSWER YOU BACK OR NOT JUST TELL THEM IF YOU HAVE TOLD THEM ALREADY TELL THEM AGAIN THANKS F0R THIS I APPRECIATE IT \\\\\I LOVE YOU PETER JONES QUEENSLAND AUSTRALIIA PSP SUFFERER

[CarlaL48 in reply to peterjones]

Yes, Peter, tell them again and again. Dale has always told me several times a day that he loves me, and I've always answered him back. When he gets to the point where he can't speak, I'll say it for both of us.

I think everyone on this board loves you, Peter. You're simply irresistible.

Love,

Carla (Arlington, TX)

[Hidden]

What an encouragement this forum is to me. Having read through this blog I know we share very common experiences. I have always said to myself that it is the PSP that causes my wife to show frustrating trends. Nevertheless, I find myself becoming irritated at times and have to pull myself up (with lots of guilt, that I tell others in this situation NOT to have! I need to take my own advice!).

We love but often we do not like, and it's the love that keeps us going (as expressed by others).

Here's a lighter question. Do any of you have problems with your loved one using the remote control on the TV? My wife presses every button (she cannot see well, and just feels) and she spends huge amounts of time finding what she wants, and often reluctantly gives up, and I have to ask if she needs help. I've seen more captions and menus and all sorts of things on the TV that I never knew existed!!!

Take care to all.

[shasha in reply to Hidden]

HOW FUNNY - I DO THAT TOO MUCH TO THE IRRITATION OF MY HUSBAND AND DAUGHTER !! hE HE !!

[CarlaL48 in reply to Hidden]

You're right, Strelley, often we don't "like." Our dreams of growing old gracefully with our mates have been dashed as surely as theirs have, so is it any wonder?

We've not yet experienced problems with the remote; however, that's not a problem unique to PSP sufferers. I have no diseases (at least, not diagnosed) and I'm frequently challenged by all the technology. Not quite a Luddite, but definitely an old fogey who plays up the good ol' days -- like the 60s when all we had to worry about was Russia dropping the big one on us.

Do you think a lighted magnifying glass would help your wife?

Blessings,

Carla

[Hidden in reply to CarlaL48]

Hi Carla

Thanks for your comments.

I think many of us are about that age when we find ourselves reminiscing about the 60"s. I frequently use the melody of some of those old songs to help "cue" my wife to take those few shuffling steps from wheelchair to toilet etc.

I have obtained a couple of types of magnifying glasses, book rests etc to help with her eye problems, but she doesn't use them. I think this may be a trait with PSP sufferers, but it could just be my wife's strong independent spirit.

Nevertheless, thanks for the suggestion.

With respect to your initial blog , I'm not sure if this quote will mean anything...

"When it is dark enough, you can see the stars".

Ralph Waldo Emerson

Take care and best wishes.

[CarlaL48 in reply to Hidden]

Thanks, Strelley. Emerson's beautiful words are a poignant reminder of perspective. Something we all tend to lose sight of when mired in the "surly bonds of earth." Now, when I'm feeling particularly low, I shall squeeze my eyes and look for the stars.

BTW, poetry was infused in my genes from the time of my birth. My mother, under the influence of twilight sleep, gave a dramatic recitation of "Invictus" during my delivery. Don't know if the doctors were amused or ready to send her to the psych ward...

Have a sunny Thursday, my friend. I have to go hoist the Stars and Stripes for the Fourth.

Carla

[SharonAB in reply to Hidden]

Dear Strelley,

That remote control......GGGRRhhh I would love one that has 3 buttons only. 1. On and off button. 2. Change stations. 3. Volume control.

(What do hospitals have?)

Regards,

Alana - Western Australia

[Hidden in reply to SharonAB]

Not sure what happens in WA Hospitals now, but in the department I worked we "lost" the remote early on, and the patients (mostly out-patients in the TV room) had to get up from their chair and go to the TV and press the channels and volume! Not many did (perhaps due that "waiting room" atmosphere of not wanting to look conspicuous).

Cheers

[Peter3]

Oh Strelley, The remote control is my husband's domain and the number of times we miss bits of programmes, have no picture, only have the main menu, have the mini screen etc etc happens everyday. In the end he gives up and throws it towards who ever happens to be in the room at the time to sort out the problem. Fortunately the force of the throw and his aim has meant no one has been injured! its another area we manage to laugh about.

Best wishes to all the remote control users x