Bill seems to be going further and further away from me. Only occasionally now does he look directly into my eyes with the feeling that he really knows who I am. It is as if it is getting harder to see the whole person as all I can see is that little piece that I can see through the keyhole. Feeling down. I want my old Bill back.....
Through the Keyhole: Bill seems to be going... - PSP Association
Through the Keyhole
Written by
Kathie48
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62 Replies
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I know. It's so hard isn't it? I get through by remembering that although I see a different person to the one I married, when he does open his eyes, he still sees me. Older than when I married him but the person who has grown older with him and hasn't changed the way PSP has changed him. I try and still be me around him, laughing about silly things that happen, crying when certain pieces of music are played and getting frustrated and cross at difficult times. I know from the way he holds my hand whenever he can that he would rather be giving me a cuddle but his arms are so stiff and fixed close to his body that he can't. I know he would like to be able to return my kisses, but he can't. It's a very sad fact that my soul mate, lover, friend will never be the same in this world, but he knows that he hasn't lost me and I pray it gives him comfort. I have my feeling down moments occasionally and it's horrible but during those times I think of all the good things we have done together and am grateful that we found each other all those years ago.
Sending you a great big hug and praying/ hoping you soon feel better.
X
Thank you NannaB, im crying.
DONT CRY`AVB PLZ
LOL JILLXXXXX
I'm fine Jillann, how are you?
I AM GOOD= - I HA VE TO B DONT I?
ANOTHJER ONLEIN PARTY IT IS BTU WHEN?
I DONT KNWO WHEN WOULD BE A GOOD TIME
WOULD SOMEOEN ELSE LIKE OT SUGGEST A COUPLE OF DATES.....
;;LOL JILL
Hey Jillann, Superbowl Sunday is next wkd so thats out for me. Then Valentines Day ....Im sure something exciting is happening there....actually that may be a good time Do you all celebrate Valentines Day on Feb. 14th?
AVB
The image of the keyhole is so poignant. I really feel for you, Kathie. My sweetheart is increasingly finding it harder to interact with me and the rest of the world, as his speech and his eyesight are failing, but he is still very present, most of the time. I can only imagine how terrifying the feeling of becoming locked in, inch by inch, must be, He doesn't complain; only once, last week, did he say that the he was frightened by the progressive loss of his sight. And my heart quails.
Love and hugs, Ec
B has never complained....When I asked him if there is pain , "no I don't like that I'm losing my eyesight" was as much complaint as he's ever given....
I whine all the time...
AVB
Like the Alice in Wonderland image it how I feel a lot of the time, what I would not give to have M back, I do not want to lose her, she still understands everything round her but is increasingly unable to react or respond.
Hope you bounce back from the depression that attacks us all, best wishes Tim
I know darlin', we all want our old mates back....however we must proceed. As you know with PSP (this is his diagnosis?), it is progressive...sometimes they hit a plateau and we can celebrate them making "achievements" But looking back; yearning for what was, only brings us grief. Read CurePSP.com and they will help you understand what things are going to happen and (why?). Bruces sight was one of the first things to go. He became VERY sensitive to light and started wearing his ski glasses inside! Besides the sensitivity, I noticed that his sight horizon was right above my head (the area where his eyes seem to rest [and never even moved side to side]....ours is straight ahead, PSP seems to begin at 20* or 30* angle upward)
So cry, rant and rave, this is a good place to do these things (by the way I'm not telling you to stop crying ranting and or raving, I'm just telling you...... )... it is what it is...
One of the things I did that seemed to help B early on was put red painter's (?) tape on the corners of walls and doors that he had lost sight of....remember to take Note where he seems to fall the most or kinds of places he is not able to navigate because of his new sight. For B, it was entering a door way...I don't know why, but something about going in just got him all discombobulated and down he would go......BATHROOMS ARE A NEMESIS!
Don't feel too put off by him not looking at you...It may not be 'normal', but have you tried standing in his line of sight? you know while he is sitting....it may work a little bit.....
Remember, inside this "new" person is the "old person" he's still your man, the one you love.....and though he may not say it again he still loves you....I can't say it doesn't hurt...I'm so lonely right now and no matter how much emotional pain I'm in all B can offer is "time to feed me" or something of that nature....So girl, rant, rave, cry but also remember to seek and find and even take comfort in your new normal.
....Truth be told I'm not doing a great job of it either right now....
AVB
I will remind myself and hopefully encourage you by reminding us both ....
This is the day the Lord has made, I will rejoice and be glad in it...
(Sorry, I can't remember book:verse)
"I will remind myself and hopefully encourage you by reminding us both." Right!! Well said, Mrs. Birke. That's so much of what goes on here. We are all struggling, and we take turns helping each other back up after we've fallen.
:'''( so true
I AGREE WITH YOU NANNA B AND AVB
;.LOL JILL\
XXXXXXX
Hi, Jill! How are things out your way? Heard any good music lately?
YES BTU, STILL K. FERRIER
HA D A GOOD SESSION AT THE HOSPICE LASTWEEK WHJERE WE EACH CHOSE A PIECE FO MUSIC WHICH MEANT A LOT TO US
`ELVIS LOVE ME TENDER
DORIS DAY WEL L KNOWN NO. WHICH I HAVE FORGOTTEN
CONNIE FR ANCIS = STUPID CUPID
I CHOS PURC;LL EVENING HYMN WHCIH ISI V PEaCEFUL AND RELAXI NG=NTO A GREA TSHOW STOPPER BUT IT Is IMPORTANT 2 EM
AN`D YEST EVENIEGN A NEIGHBOUR HAD A BURNS NIGHT WHICH W E DID N OT ACTUA;LLYSIUNGG TO AT ALL
ALL FOR NO W
LOL JILL
That all seems really great. I love all the Purcell I've ever heard, especially a trumpety piece I heard years back that I have never been able to identify again that really grabbed me. Did you have haggis with your Burns?
YES OF COURSE WE HAD HAGGIS - YOU VNA GET A VEGGIE ONE NOW AS WELL
LOL JILL
`CXXXXXX
I like haggis! And faggots, of course, according to my grandmother's recipe.
Psalm 118 v 24. No, I didn't remember it, no good at remembering chapter and verse but have a study bible where I can just look up one word and it tells me all the verses that word comes in. Cheating but handy.
X
See, I thought it was in the NT! Thank you . I always told my students: to solve a problem, use your resources....on test day, there's only one resource....your brain! Thanks NannaB!
concordance's are VERY handy resources.....
for my birthday one year Bruce bought me , Personal Promises from God's Word. It's been a great resource to me. Who knew 35 years later i'd still be reading it......I probably read his insert as often as I do the published words....
AVB
I became a Christian in 1983 and Colin bought me a lovely new, red NIV bible. A dear old friend said she would baby sit if we wanted to go to a bible class they were running at her/ our church. It was snowing and the snow was quite deep. As I came out of the front door, I slipped. I didn't hurt myself but dropped my new bible in deep snow. The thin pages went all crinkly. It's still crinkly but now also well worn. It also has notes written in it, verses highlighted and underlined. I was never allowed to write in books as a child and I felt terrible the first time I wrote in my bible but the underlined verses sometimes jump out at me when I need them to. Over the years we have collected many different versions but I still like my red crinkly one the best.
X
NannaB made me feel so sad, George sometimes just looks at me, he does not talk very much to me, he tends to talk to other people, makes me feel sad, kathie my heart bleeds for you and all the careers who are looking after loved ones with PSP xxxxxx
Oh dear, sorry I made you sad. It's Friday night, the night I spoil myself by ordering a takeway, having a drink of wine and watching a DVD or catchup TV. Perhaps you could spoil yourself. Tonight I am watching Frozen. Our Grandchildren sang most of the songs from it last weekend so I've finally decided to watch it.
I hope your weekend is as good as it can be.
X
We need to watch Frozen......songs from that movie are always floating around .....
Ordered a Vietnamese takeaway. Made a change from Chinese and Indian. Very tasty and had a glass of Alexis Lichine Bordeaux 2013 that our eldest left last weekend. I finally heard Let it Go all the way through. I enjoyed Frozen but I didn't understand why a lot of things happened. I suppose children just accept but I need to know how she got magic powers and how her parents died. Too many loose ends.
X
Well her parents died when the ship they were on sank. She got her magic powers - well because it's a fairy tale. lol
Hope that helps solve some of the mystery for you. Watch it again with an extra glass of wine and a) you'll understand more or b) won't give a damn!
Joeglad
Thanks for that. I don't know how I missed the ship sinking. I'm pleased I watched it as I can now join in conversations with our grandsons but not sure I'll watch it again, even with extra wine.
Next week's film is The Way with Martin Sheen, "moving and incredibly uplifting".
X
Joeglad
HA HA HA HA!
Hi, Goldcap! It's been a while. How are you? We went for a drive today. Cold, sunny, the river frozen here, open there, all very sparkly. We even went for a walk of sorts, 15 feet from the car and back, about two feet at a time, and listened to the ice groaning as the tide and temperature shifted the surface. Nice day. Not like where you are, I bet! So, how are you? Love, ec
EC, I'm ok. I have been following the storm reports on the east coast-with envy i might add! The snow in NYC looks so beautiful. I know it will end up dirty slush that when you step over the curb you sink in but ahh I remember how pristine the first snowfall was..and the silence from the city shutting down. Sounds like you had a cold crisp day, I love those. I grew up near a lake that we all skated on. Such a cause for celebration it was when it froze over! There was always some brave soul who tested it before we children were allowed on it. Keep him walking s long as you can. I feel like we are all changing stages all the time. Like we are relay racers and we pass the baton to the next person coming up behind us. When I first started on here I was almost envious of some and in awe of others (their positive attitudes and ability to cope) Stages that seemed so far off in the future then have long passed. Glad you had the day you did and hope another is not far behind. Watch out for slippery patches of ice and make a snow angel for me if you can
xo JGC
I remember skating like that too, on the river that runs through my hometown. It was always quite scary to me to see my father go out to test the ice. It was the Niagara River, above the falls. I don't know where the grown ups got the nerve to do it, except their parents must have done the same.
As for the stages and the changing point of view, oh yes, I get that, too. I feel quite the old hand sometimes, and quite the novice when a new crisis arises...daily just about now.
Hang on, girlfriend. Ec
Thanks for all your lovely thoughts. I am sorry folks. I KNOW you are all suffering too. I just needed a rant. Bill has CBD but it is nearly the same as PSP {I have known people with it as well. I have had PD for 10 years and have been very involved in the past.) Last straw today .... the Department of Work and Pensions have halved my benefits as they think I do not need any help getting around! I am being punished for working hard to keep myself fit to look after Bill
I think if you need a rant, you have further to go, Kathie. That didn't seem very ranty at all to me, just an honest expression of heartfelt pain. Your expressing it so well allows us to share. Painful, but somehow helpful, at least to me. Terrible about your benefits. Any appeal possible? (As if you have nothing else to do.)
I'm guessing you, Kathie, are in the UK? Social Security in the US did the same thing to us......This was after we appealed aaargh!
AVB
Hello, Kathie,
I'm feeling pretty low at present. Theres so much to do on my own and Chris seems to conserve his energy for others and none for me.
I know I'm the most important person to him and he loves and appreciates me but it feels very lonely with this disease. I can't always hold on to the belief that he is still there but locked in. I can't always find the key to the keyhole.
It must be so dreadful for him on the other side of the door, I know.
Its all so tragic.
Love and hugs, Jean x
Oh Kathie, I understand so much of how you are feeling! I am tired of being the man and the woman around here. Does that make sense to you? Everything takes so much effort-almost superhuman at times. I am always running ragged-and LATE. No one seems to truly understand (except you guys here) what it takes just to get through a "normal" day let alone out the door to an appointment. I was out walking my dog the other night and felt sad seeing all the happy couples out on a date night. The one that put me over the edge was an elderly couple-much older than us even, who were strolling hand in hand. He leaned over to say something to her and she smiled. I went home and dragged him out of bed to watch a movie with me. He was agitated and angry but settled in when the movie started. He watched the whole film and the part where the wife died seemed to upset him to the point where I almost turned it off. Later when I was getting him up out of his chair to go back to bed he would not let go of my hand. He held my fingers to his lips and tried to kiss them. Have to remember the moment the next time he is thrashing and moaning all night long and I am short tempered the next day. None of us signed up for this...PSP goes beyond worse. Should have been for better or even worse than you could ever imagine. Yet we all continue hoping for the best but anticipating the worst. Trying not to lose ourselves as we "lose" them. I cannot imagine what it must be like for them and when I think of this I chastise myself for not being more considerate or caring when in reality I have given so much there is very little left and I have cared far too much, physically and emotionally. I am sorry I have not been very cheery. Just know we all love and support you and you are not alone!
Take care,
Jayne
Sending love and support Jean. It's so hard isn't it. I can particularly relate to your comment about him saving the effort for others.. One particular incident which upset me was when a relative said, after a visit, "Oh he seemed much better than I was expecting. From what you said on the phone I thought he would be much worse". This after a superhuman effort on D's part to talk to her leaving him wiped out for the rest of the day!
Vicki xx
I too get that all the time. I feel that saying "how it really is " is letting him down.
Did you get to the last meeting ? We didn't and I don't know when the next one is.
How is Derek with his driving ? Chris zig-zags with his walker.
Jean x
Yes we did go to the meeting. It was very entertaining because they had the barbershop choir performing - Derek loved it! The next one is on 2 March. Hope to see you there.
Derek's driving is non existent now. The electric wheelchair we have has dual controls and originally Derek had to show that he could steer it with the user control but he can't do that now so I have to control it from the back. Even in safe pedestrianised wide open spaces he constantly veers to the right and then over-corrects and goes round in circles.
V x
Hugs to you, I so relate to how your feelings. Stay strong and take care of yourself..
Got that Tee-shirt! It's so awful isn't it. S will never look at me now, I have to force him to glance at me, if he is trying to talk. Can't understand hardly anything anymore, apart from the two finger salute that is far too frequently, sent in my direction. I know I get cross, when perhaps I shouldn't, but it's not him that's been awake since 4.30 this morning, because he decided to get out of bed, then pee'd on the floor, nearly fell. Bedclothes soaked, because he had taken off his pad, but I just put a puppy pad on the bed, I just couldn't change the bedding at the time. Been awake ever since, so decided to get up. Now have a long day in front of me. He won't be up for ages, then it will be an hour showering him, two hours to eat his breakfast, before I can even think about sorting out all the things I have to do today. We have his friends coming for dinner and staying the night, but it's me that will be doing EVERYTHING, I doubt if he will even speak to them, so I will be chief entertainer as well. I know I will get some enjoyment out of seeing them, (drinking partners!!!) but the feeling that life sucks is very strong at the moment!!!
As for wanting S back, the way I feel at the moment, it would be just long enough to sign the papers before I run very far away!
Lots of love
Heady
Oh Heady I have been there! Probably then we would not know what to do with ourselves...well maybe sleep
Feel Better,
Big Hugs!
Jayne
I also feel so very much alone, having to organise everything to keep Horace safe and comfy, but last night when putting him to bed I just said to him, "you can try to give me a kiss if you would like to" there was a faint smile a very soft kiss and mumbled words from Horace "you are a good one" and somehow that moment was most beautiful, I felt his love for the first time in months, so perhaps if we remind our loved ones of all the better times we had together and talked ourselves of what was dear to us they may be able to respond in little ways and help us feel that our job is appreciated and that their love is still there even though hidden for most of the time. I am going to work on the positive and ignore the negative, and be as strong as possible, love to you all and thank you for letting me share my ups and downs with you all, you are a great bunch
May you have many more kisses. It's so uplifting when something like that happens isn't it.
X
Yes already feel like I've lost the person I loved, which seems to make the 'careing' role more difficult, I maybe totally wrong but I feel like it wouldn't be quite so bad if he was still good company and not so zombie like!!
Love to you all
Debbie
My sentiments are much the same as others here. I know that Ben is in there somewhere but only shows glimpse every now and again. I feel very overwhelmed by having to do everything myself and I know it saddens him too. Last week helped our younger son move to his new flat. I had to help hump all of the furniture, unpack, clean etc whilst Ben had to sit in the chair and watch. Then had to drive the 200 miles back home, call in for shopping etc etc. Had to sell my car yesterday, not something I'm really comfortable with as we are going down to 1 car. He hasn't driven for 15 months now but I haven't had the wherewithal to sell it before. Although Ben can still speak ok although his voice is much quieter and he slurs his words, esp when tired. It is the content of any conversation that I find difficult, he can't seem to engage in any conversation other than mundane daily chitchat and asking me questions that I have already answered beforehand. When with friends I have to do all of the talking although I think he enjoys seeing certain people. He was such an independent strong character and he is just a shell of his former self and is very well aware of the fact. How I hate this disease , it feel like slow turture for the both of us and difficult to find any joy in life. Sorry that's just how I feel at the moment, think it's the post Christmas blues. Love and strength to all, we certainly need it. Xxx
Chris seems to be in a similar place. I relate to all you describe.
I saw a counsellor yesterday and we were talking about how we are always mourning the loss of another part of our loved one, whilst dealing with the shell that remains. I struggle to treasure what we still have , and I know will go, but its very hard at present.
I also had to sell our two cars and buy a middle sized one. All on my own and Chris showed no interest at all. So its lonely and also emphasizes how he is changed.
Hope better weather will help raise my spirits !
Love, Jean x
Your post reminded me of 5 years ago when our youngest son moved. When they got the moving date he hired a van for Colin to drive. The diagnosis came a couple of days before the move and and I persuaded Colin he shouldn't drive anymore (it had been a nightmare for ages). Guess who ended up driving the van.....me who only ever drove when I had to and only locally. Fortunately it was only 7 miles, not the 200 you did but I did make 3 journeys. It was then it hit me that life was going to be very different, with me doing more. At that time I never realised how much more. I do get a sense of achievement though, when I master a new skill or solve a problem C would once have solved. I just wish I didn't have to and there were not quite so many.
X
Its s struggle, but we can still get out using the wheelchair and quite a lot of effort on my part. Last night we went to an annual dinner dance, complete with dinner jacket and long dress . I am so glad I made the effort . We enjoyed it. I was sitting next to someone I know quite well. He seemed to be on a "high" talking quickly , changing subject and so on. Quietly, I asked his wife if he was OK. She said he has been diagnosed with Bi- polar disease . When I sympathised, she said that the worst thing she had to put up with was his incessant chattering, all the time. Next time I feel sorry that B and I can't have the sort of conversations that we used to have, I will remember her comment. We all have our cross to bear, don't we? Thinking about the good times past keeps me going . Love to all.x
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