Boy oh boy ! 3 `good` days but tonight ... back to normal with a vengeance.
Terrible mobility, awful cognition, falling all over the place, unaware of what I am trying to say (to help him!) totally `out of it`. Fell off the stairlift seat while trying to go straight back up to the toilet. Everything is a panic these days. I always try to give clear, simple instructions one at a time, in English (!) but P just looks at me as if I am speaking in a foreign language.
Some days I think I can do this but then days like today I know I can`t do this by myself any more. This cruel, terrible disease destroys not only the patient but their families and carers too.
Wish us luck, I hope we`ll make it through the night.
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NanBabs
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I hope you do too. If you don't already have outside help, now is the time to get it before it all gets too much. Since 2010 when C was first diagnosed he has had times of stability where things, although not right, didn't change and I got used to things he was likely to do. The new normal almost reassured me that he wasn't getting any worse when suddenly he would take a "dive", speech would be worse, falling more frequent, choking more frequent etc. Until I got used to the new, new normal again I thought I'd crack up but then a new routine would be established, new equipment delivered and off we would go again. Another plateau until wham! Another dive. It still continues now.
Have you a downstairs toilet? Have you thought of what will happen when he can't use the chair lift any more. Can he sleep downstairs. You may have this sorted but if not, I think now is the time to think about it.
I hope tomorrow is better and you did get a good night.
Sending you a reassuring hug, you can do it....with help.
Thank you for the support, it is so needed at the moment. Like all of us I carry on day to day, trying my best for no thanks or appreciation, then P changes in an instant and I think "oh no, here we go again".
I try to accept any help offered and I have a week's respite booked for next week. We have a male carer in the morning who gets P up Showered, shaved and dressed and I take him to daycare for 3 days a week, although he has been going for an extra day while someone else is away ill.
We have all the equipment offered so far but P doesn't think he needs any of it.
I am soo with you....Last night this horrid monster in ME came out and just screamed at B..... STOP....Why are you doing this to me again
I created a spitune(made of a cut 1 gal out milk jug {2litres} )for him to spit in instead of the garage floor, and/or body parts. I even put sand at the bottom for absorbance. He was happy he had it, I was glad to solve yet another problem...spitting up mucus everywhere to spitting up mucus in a cut out plastic jug....And then, as I was giving accolades to MY newest invention ...he just went and spit on his own self, leaving a trail of mucus from his body to the garage floor!!! So much for accolades. Now I am screaming "what the Hell?, why did you do that?????" everything he did was ending in something that made me furious, I asked him again, "why did you not use this cut out milk jug as your spitune?...He said it (his action) was stupid. he did not know why he did it!......So do I continue to be mad????? He continued to fall and I could not prevent or fix it. It just was going to happen. I finally cooled down and after putting B to bed, I went on this site and read the posts....It really helped me mellow out.
I talked to him today and told him that he has got to get more prepared for bedtime before his nightly drugs.....He agreed. Tonight was better but I think it was more out of fear ( the wrath of wife) than figuring out a better pre bed drug regimen....I dont know.
I just know .... . I read others posts and I see that many amongst us are farther along in the degradation of psp... I feel guilty....Maybe B and I have a great life along with, or despite PSP!!!!! Maybe I should not feel the way I do...but I do
I will stop here, no answers, just empathy for you....something our mates lack
AVB
I liked how you said "Back to Normal" remember that there is no going to get better, (but there is a new normal)...just plateaus of "better" met with days of progressive horrid disease, . This is where the carer (who doesno't want to kill the mate) kicks in, and takes a deep healing frickin breath and prods on....We can do this, right NanBABs?.....I so want to get my own life straight so as to help my mate. I cannot be angry....I cannot be mad...................right?
The whole thing drives you mad how long will it go on for? When is it going to end? How is it going to end? Saturday I have booked him in for a 10 night stay in a care home I cannot wait to break free for a while, sounds selfish but PSP can literally drive you nuts.
This all seems so grim, like terrible nightmare that you never wake up from. I try to put all of these thoughts out of my head as Ben not at this this yet. It's odd I don't want to know the future but am glad I do as it helps to know what's ahead so that it isn't such a shock. Hope you have a better day. Xxx
Could have written most of these posts. I think S is in diving mode at the moment. I know I am struggling big time. Had my four hours off yesterday. Spent it crying! How I hate being kicked out of the house, away from the man I love. Yet, I can't bear to be near him. I shout and scream ALL the time now. It's not fair on him, or me!
Not sure which is the worse time. Mornings, when I have to get him out of bed and straight into the shower, to hose him down. Or struggle at bed time. I think, my respite 4 hours is going to have to go. To be replaced with carers coming in, either morning or night. Last night, made a real effort to get the night time routine started earlier. Finally got him into bed. Then locked myself in the bathroom and sorted myself out. Took a long shower, just basically took my time. Normally, I have just worked around him, so we could both go to bed together. Think those days are over! Certainly worked a lot better, went to bed a lot calmer. Even slept. Mind you, that was probably the pills I took, plus NO sleep, the night before!!!
Really don't know how much longer this can go on? Yet, I know, we probably have years left, working out how others are!
What did we both do to deserve this????????.??..?????
Thank you for your usual helpful reply. We had another bad disturbed night and I feel very heavy headed today but P woke up with no memory of yesterday evening or last night, so maybe his approach is the right one - I.e. Today is another, fresh day ! If only I could be the same.
I often wonder how much longer I can survive this disease, let alone how much longer P will have to put up with it.
Hi, I often wonder, would it be better if we did have a time frame?
Would I be far more tolerant, if I knew when this would end. Or would the grief and the enormity of the situation, be too much to go through?
I just wish I could have answer, I have GOT to stop shouting, but don't know how.
I have just had a counsellor from the Hospice come and see me. Nice lady, spent most of it crying! Don't know if it's going to help. But she is coming back next week. I suppose, like everything, it will take time. I NEED something to work NOW,!!!???? So does S!
Hope your day is running fairly smoothly. Isn't sad, that's the best I can wish for you! Can you remember what a really good day was? I cant!!!
Hi Heady, You sound just like me I feel so guilty for shouting and crying all the time. When I loose my cool my husband starts to laugh I know he does not mean it but its so hard when your are upset and cant cope. God we all seem to be in the same place. I do feel if we knew the time frame would it be any better I dont know but I even feel guilty thinking that. Take care
I too wonder if I would cope better if I had some idea of how long I will have to go on doing this. A timescale would help us make long term decisions. I have to admit I don't like the person I have become I know I am prickly sometimes, more impatient than I ever used to be and I often feel I can't cope - all alien feelings to me.
Sadly we aren't going to have any idea of how long we have left probably until close to the end. hindsight is wonderful thing and foresight even better but infinitely more difficult, so we will all have to struggle on, still shouting or crying more than we ever have before.
I can relate to all the comments. Very hard to stay calm. My husband is all the time trying to prove there is nothing wrong with him. Picking up things off the floor and falling, carrying dishes and breaking them etc etc. I am all the time on alert. When we go out with friends he tries to pour the drinks without even asking anyone if they want anymore. He cant understand he is not able to do this . Everyone is on edge. He bent over a big glass table in a reception to pick up something off the floor and at least two of the friends jumped up to stop him. Its so hard for all around . I feel so sorry for him because he was also available to do anything I think this is the hardest for him. God I could go on and on, but this horrible disease ruins so many lives.
That sounds so like P, even though he has not walked unaided for many months and has not made a cup of tea for almost a year and needs help with absolutely everything, he still thinks he can do it all. Which is why I have to watch him constantly.
Oh oH OH I remember those days.....they were last year.......He no longer tries to start the gas stove which consisted of 'gas on' but no fire ...until he lit the match seconds later (s0 much for the electric starter)....and then small but scary explosion.....or pouring coffee....everywhere but the cup........and it was last summer he gave up driving . He finally realized that corners came all too suddenly. And strange but true, he could walk up to a door but one step through the threshold, and he was crashing like a tree usually on to the lamp that was "out of his way" (we still use that floor lamp albeit bent with lampshade broken and crooked [I just cant see the purpose in buying yet another new one]) now I have to help him maniipulate spoon to mouth. He can still eat solids though thin liquids get him.....and like I said last night, his mucus is the new problem to solve! And going out? not any more, we just stagnate eating tuna sandwhiches and watching some RIDICULOUS tv show....which will be suddenly changed to some other ridiculous tv show.....It's almost 10 am and I already just want to go back to bed.......I will not let PSP overtake my mood and behavior .....starting at 10:05...so I still have a few minutes to vent.....hahahaha
Well he's up so I guess I don't have 5 minutes....better go get that happy face on....Does anyione have a scripture that will help me througfh this day?
I hope today is much calmer and better for you , it's so hard , I know it's even harder to cope when deprived of sleep. I hope you have tapped into any support available to give you a little respite sometimes. My thoughts are with you x
Thank you for your kind support,it is so important in this community to know we all have the same experience. Only someone who has been through this can appreciate what we all go through.
It must be that time again. Brian has had about a week of good days. We have been out several days has even refused soft food (in favour of proper food as he calls it).
Last night he was hard work could bearly stand for transfer and today in his words he feels washed out and has been hard to get stood up straight enough for safe transfer.
To much gadding about or downturn am not sure but we did enjoy our outings and pub lunches last week.
Good for you guys! I wish B would / could really tell me what's going on inside him. He does tell me."I can't go because I can't walk" its more of a ruse so he doesn't have to go.....he can still walk with assistance.....
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