After an , "I can't do this anymore" start to the day, I went to a friend's house to unwind with coffee and a chat. At lunchtime she gave me a lift to a local pub where we met another friend for lunch and a laugh. When I collected my darling from the Hospice I was presented with these lovely roses. It's turned into a "Yes I can" kind of day.
Yes I can!: After an , "I can't do this... - PSP Association
Yes I can!
Written by
NannaB
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57 Replies
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Yes you can NannaB! God give you strength and peace.
How lovely, glad your day turned out well, let's hope there's many days like that!
Love and hugs....Pat xx 😘
If anyone can do it, it's you NannaB. Glad you had a few laughs, does you the world of good doesn't it? I had a bit of a breakdown at my councelling session at the hospice last week and caused a bit of panic situation, felt terrible for causing a stir as it was totally unintentional, just shows what you have going on in your head that you don't normally share. In the end I think it helped and people know more about how this situation is affecting us both even though we aren't as far down the PSP road as you and C. Take care now and here's to more laughs with your friends, cheers.🍸🍸🍸
Dear Katie, just because you are not so far along the journey of PSP, as some, doesn't mean you are not suffering! The early days are VERY hard. I know you dread the future, but in some ways it does get a bit easier, well things change! There were things at the beginning, I thought I couldn't cope with, I too broke. But now, those thoughts are real and I can take them in my stride, I have new fears now, equally as traumatic, hopefully, I will be up to them. Who knows, but I will keep up with my counselling, it does help, no matter how much i scream there. We all need this release. Accept it, use the freedom to express your feelings. I know I am and it's helping!
Lots of love
Heady
Thanks for those words of wisdom Heady, I'll try to carry that with me along this long lonesome road. xx
You are right heady, in some respects it is easier as time goes on .
I have found it easier since John Spends more time in bed . I can keep the bed higher so it's not as back breaking and by using the ceiling hoists it's taken SOME of the strain off my back .
I might change my mind in a while though . !,,!!!!
I have 7 close friends who have all nursed their husbands through terminal illnesses so know what I am going through. They are my counsellors. I see them all individually quite often but once a month we all get together for "wine appreciation". We are all very open sharing things that we wouldn't dream of telling folk who haven't experienced what we are experiencing. I am the only one who still has a husband. Pete died from motor neurone disease a year ago so his wife sometimes has a wobble but after a few glasses of wine we are usually aching with laughter at things that those who didn't know, would be horrified about.
Don't feel terrible about how you reacted at your counselling session. They will be well used to all sorts of reactions. They want you to open up rather than bottling it up. It is important to be able to confide in someone.
Have a good weekend.
X
NannaB, My husband and I quit going to church and all social activities when he go sick. Drooling got to him out in public. Maybe it is time for me to get back into a ladies class where there might be others like me. I do not see a councilor or go to any support groups. Sometimes, I feel it is all that I can do to take care of everything around the yard, house, bills etc.... The one beautiful thing is the grandkids still come and visit every few days for a couple of hours each time. That keeps me busy.
Grandchildren are so good for brightening our lives aren't they. Apart from the church which we joined in 1984, I joined all my other groups since PSP. I have known several people over the years who have devoted every minute to their loved ones and when they have been left alone have been totally lost because they have lost the confidence to go out and do things alone. A neighbour has become agoraphobic since her husband's death a year ago. She used to be so outgoing but everything stopped when her husband developed altzheimers. Before PSP I worked full time and took part in church activities but nothing else. I took C to church every week until he needed to be moved by hoist but now it's just too much of a rush getting him there for 10.00am. Once a month, or more if I ask, a group of friends come and we share communion but I see much more of my since PSP friends now. This site and them have kept me sane. It wasn't easy going to new places on my own at first but I knew I would have to do it eventually or end up depressed and alone when family weren't with me but it's rare for me to be alone for long now. If you can, get back to the ladies class. Apart from making new friends or catching up with old ones, it will give you something to tell your husband about. C is my priority and is never neglected but apart from the bills, which I keep on top of, the garden/yard and housework can wait if I have something more enjoyable to do. If you have time, Google the poem Dust if you must. I never wrote it but it's what I think.
Enjoy your grandkids.
X
Yes you can NannaB and what beautiful roses 
How lovely, I've had a can't do this day too, big changes happening for us, my daughter is taking me out to lunch tomorrow so I'm sure I will feel the same as you after it and feel able to carry on with the next stage in this horrible PSP...I got some beautiful roses from my family for valentines as hubby was in emergency respite, I put them in a pretty vase and wondered why they drooped so fast....I only forget to put water in 😱 enjoy your roses xx
Easily done. I'm sending flowers that don't need water. Enjoy your lunch out.
💐 X
Hi Nanna, I got a lovely big bouquet as well, it was waiting for me, when I bought S back from the respite home! Also, I had a single red rose from Ollie, via my niece! Aren't our families wonderful at times! S only use to get me flowers from the garage, on his way home from work, if he remembered! Still, I know he was pleased with my response to the roses!!! respite has really worked for me. I feel so much better. Yes, the first couple of days were rough, especially trying to deal with his broken elbow. But because I was rested, I have been able to cope. Looking forward to the next one now,, if they will have him back. CHC office not impressed about the fall, yet to see if there is any fall out!!!
Lots of love
Heady
Glad you had a good day. I had a lovely bouquet of flowers last Sunday from our two little grandsons (organised by daughter). It was so thoughtful of her.
Tomorrow I am driving down to Devon to celebrate my sister's 70th and our son is coming to stay with D. I hope he will cope with the help of the carers. I will be back on Sunday so should be OK. It will mean a lot of driving and a lot of organising but I didn't want to miss the party!
Vicki x
Glad you had a good day. Beautiful roses.
Oh how lovely and well deserved.I hope you get many more happy days.
Des is so much better in the hospital bed,I can only guess but I think it stops him from wanting to get up and move around.
He has pulled the curtain + pole down again so must look into blinds perhaps they do speaking blinds that say Leave us alone!
He has lost 6 stone since diagnosis but arm strength amazing.
Enjoy your Roses
Love Pauline and Des xxx
So pleased Des feels more secure in his hospital bed. It make such a difference if you can both have fewer disturbed nights. I like the talking blinds idea. I know what you mean about upper arm strength. Colin can't do anything now but I told him I was going to enter him in an arm wrestling competition as he would win.
Have a good weekend.
X
They are lovely , what a nice surprise , glad you were able to get out for.break and catch up with some friends . I am hoping to go out next Saturday evening , the friend I am going withs daughter is a nurse and has offered to sit with John .
It's good you find the hospice is suitable and colin no worse when he returns . I don't think John wouldn't be unfortunately .
I have started using the glycopperate , not sure if that's correct spelling ! Been using just the smallest drop to start with . I am so afraid of the side effects he normally gets from so many of the meds , we have already had more thrashing about and he screamed earlier shouting out don't shoot
Since the episode with the bullous rash which caused dreadful blistering and swelling of his lips it's become even more difficult .
It's so very sore and he won't stop licking around his mouth . We are treating it with Daktarin . I wonder what next that can be thrown at him ,
It's all been guess work and trial and error .
Do they use hoists at the hospice .
Colin only goes to the day centre so he isn't there long. He can't do much but has reflexology and goes to the short Christian service which he likes. He can't take communion now but he likes listening to the music and spiritual readings.
I do make a point of seeing as many people as possible during my "time off". I went out to lunch with different people on Monday and had the ukulele group here on Wednesday. This week our son and his wife came on Thursday afternoon and we had several unplanned visits from friends. Today is the first day this week when I think we are on our own. I think I'd better do some housework. Apart from lots of laundry washing and a quick run round with the vacuum cleaner before the Uke group, I've done very little other than look after Colin, make coffee for friends or go out. I've decided that by leaving our house a bit dusty and a little cluttered, it makes all my visiting friends feel good about themselves when they return to their neat, dust free houses.
Has the glyco made a difference? It must be awful watching John suffering so. PSP is bad enough but his other condition sounds horrific. Poor chap.
That's good you have a nurse to sit with John when you go out. I can only leave Colin with professionals now or with our son's for short periods.
I hope your weekend is good.
Take care.
X
Yes not easy Bev . I don't admit that to many including myself lol ...
The carers came this morning at seven . I set my alarm for six and it goes off three more times but I tend to turn it off quickly each time and go back to sleep I sometimes don't even hear it or might in the background .
Mornings have never been my natural best time . It's amazing I have coped so well as it is now .but needs must .
I try to come down first to rouse him slowly . Clean his eyes nose and mouth and give him a drink and his first meds . We don't like being rushed do we , and we are well .
But they just get on with bed washing him and commoding. It does go through me knowing he really isn't awake properly .
I have kept to the early time though because we have been having the same two carers and we are first call so always on time.
Not sure what will happen if we do get CHC. By the way I had an e mail on weekend from the social worker saying how pleased she was that the meeting went in our favour . Still not holding my breath though .
The carers put John back into bed and I couldn't rouse him then until Eleven when he had some porridge then I commoded and hoisted him into his chair where he has gone off again. So difficult to plan anything it is full time .i have changed his bed and washed and dried .
The one good thing is I don't usually get wet or soiled beds so that's a blessing . He has a pad always and today it was drenched but that not really usual ..
I need lots don't in and around the house . The outside porch looks so scruffy now . I can't stand the thought of having anything done now though .
That's good you are keeping your friends. It's why I kept going to the club we belonged to we were both trustees ,
I tell everyone to make sure they they find some younger friends , . I lost about five of min at the same times as my mother and felt like my legs had gone beneath me. So remember everyone. Make some young friends lol
Your morning sounds like mine. I've just told Yvonne how I am not a morning person. C has 7 am carers for the same reason as you. When my dad was alive he wanted carers at 8am and they were always late. Several times he rang me at work at about 10am to say he was still in bed as no one had arrived and I had to contact the agency but they were always on their way. C lies on a disposable incontinence sheet but a couple of days ago his convene came off and everything got soaked including the pillow that was between his legs.
Do you have a problem putting the sling for the hoist on John? C can't help me and it involves a lot of turning, pushing and pulling. His sling is in one piece and sometimes I have a job to get him in the middle of it with the straps on his legs even. If he is slightly over one side, I can't get him on the commode properly and have to start again.
A lot of my friends are the same age as me or older. I know what you mean about losing them. 10 years ago my closest friend and neighbour died suddenly when I we had gone away for the weekend. She had sat in my house as I packed our small cases, chatting and laughing and when we returned she had gone. Within 4 months 5 other friends had gone. They were from 60-72 and every one was sudden. I was in my 50s. I was devastated. As usual this is turning into a long post but I must tell you how even the saddest times have their lighter side. 3 days after my dear friend V died, I met with 8 other mutual friends. V should have been there making gifts for the first birthday of a bi monthly women's breakfast we organised which was taking place the next day. It was awful to start with. We were all crying so our host opened a couple of bottles of wine. We started the activity putting a candle in each of 150 cupcakes, wrapping them in cellophane and tying with a pink ribbon. One host said although she had known V for years, she didn't know what her favourite flower was. We all said the same so our host got a pad and pen, wrote all our names down and said we were all to say what flowers we want at our funeral. We went round the table and ladies said what they wanted. I said I want everyone to bring one Gerbera and lay it on the coffin so it is ablaze with colour. We got to the last friend who said very decisively that she didn't want any flowers on her coffin or in the church. When we asked her why, very seriously she said,"Because I suffer from hay fever". Our tears were now tears of laughter but the person who said it didn't know why we were laughing. We all knew V was looking down laughing with us. The hosts husband came in to see what the laughter was about and ended up doing the remainder of the cakes as the wine and our emotions got the better of us.
X
Love it lol .. now I am going to sound really ungrateful when I tell you , if someone turns up with flowers for me , they are lovely to look at as they give them to me but my heart sinks know I now have to arrange water and change when necessary . ..
I don't have a lot of places I can show them off to best advantage and the house is very hot so they wilt quickly .
I tell people now beforehand . My sister in law cane the other day . I know she appreciates what I do for her brother . She said give the the vase and I'll see to them . I had to drop everything and find the vase and then she turned to me and asked when I would like them put !!!!!!!!!
I just laughed out my hands out and said u tell me . Lol
She laughed with me .
The next time she came it was my birthday and once again flowers , she stopped and me and said don't. Worry they are artificial . Orchids .. Already in a small container , they are looking at me now and very nice no watering ..
I love gardening although not as able or have the time ,love flowers in the garden. So I now tell people to all bring flowers for me at my funeral .
The sling .. I understand how difficult it will be for u with the sling . It's so frustrating .
John is able to help me if I prompt him sometimes better than others of course . When John goes in his chair I place a slide sheet over the back so as he is hoisted down his shirt and pillows don't wriggle up . I wonder if you could do something like that it does help. A little . Could the sling be left in place around him . I know we shouldn't .
I have a similar problem now John has an air mattress . I try to slide the sling down his back and it gets wrinkled and stuck it won't go down far enough . I expect the carers put it on when they turn him on the bed ?
so now I place a slide sheet on the back of the bed and put a flat pillow on top. . In the morning now The carers leave him in bed generally . Not this morning he is better today than has been for v long time ..!!!!!!!
When I get him out now I remive the pillow and then the sling slides down a little easier . As I said though Bev John is still able to help me a little . I watched the video yesterday that came up describing PSP . I can see now John has Parkinsons amd not PSP ,although very very similar . I could never make out. What the difference was .
It's a shame they don't make a toilet access sling which you can leave on at all times , can we get to the drawing board and make one ...
I know what you mean about the flowers. Mine get moved about a lot, on the hearth til the fire goes on, then moved from the coffee table when transferring etc but I do like them. They don't get arranged just put in a vase. I do use a slide sheet but the air mattress does make it difficult doesn't it. I also keep the sling on him if he is in his chair. It is a mesh one and made to stay in place but not in bed as the straps are thicker and would be uncomfortable. The video was good wasn't it?
Better start on lunch now.
X
I have just spoken to my carers , they have just left . They had one lady who left hers on all the time but lined it with a fleece . She had MS ..what make is your sling we use an Oxford padded without thigh straps . That's what it says on the back , it is quite a heavy one . I don't leave it under his arms or legs just the back .
I normally remove it but sometimes if he is on and off the commode a lot. ( that has eased lately ) I will leave it on in the chair .
Just going to sort our dinner out now
Good. Hope you have more " yes I can " days. I relish the good days so much now !
love, Jean x
Beautiful flowers !
I took a Valentine card to P in the nursing home and some chocolate hearts for the girls who care for him (also some for him) and the following day one of the girls told me there was a card for me in P`s room. When I went to get it - one of the girls had `helped` him make a card from printer paper for me .... and.... he had `signed` it !! That is the first time he`s `written` anything for over a year so I was very emotional. Maybe not so beautiful as the roses but just as important to me.
xx
Your card will last longer than my flowers. The last time C sent me a card that he had chosen and written, was five years ago. He wrote, in tiny writing, With lots of love and thanks for everything. I have put it up every year since and may do so when he is no longer here. So he doesn't feel bad about not getting me one, I also get out the one I gave him that year. 4 years ago our son bought one for him to give me. I thanked him but told him not to bother the following year as I was using the one his dad bought me. I always have a little cry when I read the words on the card and he has a little tear when I read him the one I bought for him.
So save that card and look back at it in future years......there are ways of preserving flowers but it's better to have Ps card which could look the same for years to come.
Have a good weekend.
X
I think I have a 'I can't do this anymore' day everyday
Flowers look lovely, I didn't even get a card!
Xxx
Neither did I but I've just told NanBabs I have used the last card C gave me 5 years ago, every year since.
I hope today is an I can do it day. I nearly flipped a couple of hours ago but ended up laughing. For a long time now, to stop C fiddling with his convene and now the PEG, I give I something to hold. Today I gave him a lavender bag that he sometimes holds at night. He spends time in bed each day to keep him from sitting in one place. I could see the sheet moving so lifted it to make sure he wasn't fiddling. Somehow he had managed to split the well sewn bag and emptied every bit of tiny lavender over his unclothed nether regions. How many cracks and wrinkles does a man have? A lot and every one had lavender in it. He was covered. After looking and thinking what next, I actually saw how funny it was. I ended up vacuuming him but used a useless hand cleaner we bought a long time ago which, at the Ideal Home Exhibition looked wonderful. I didn't think I should attack his nether regions with my normal one as they would have been sucked up as well as the lavender......I was tempted though, just to see what it looked like.
X
Lol
Can't stop laughing.
Chris today was tired so came down to see our sons wearing his dressing gown. At one point he raised his legs, in spite of me telling him to keep his legs together. Our sons roared with laughter and said " not a pretty sight, dad !! " Later I found he had pulled his pants up with the important bit still exposed !!
Fortunately no grand children were around. Although they would have laughed a lot.
J x
I bought a musical valentines card one year and I brought it out the following year to see if he would notice . As I thought he didn't so I bring it out now every year . For fun They tell you to recycle don't they .
An old friend of ours who moved away . She has lupus and. It very well . We use to garden together . For my birthday she always takes photos of the flowers she picks from her garden and make a card out of them . I still have it up now . Like you say no watering .
Those are beautiful. You are one great person and deserve a special occasion like that.
Oh not to take away from your day NannnaB, but I got a Birthday card yesterday....from Google!
How do I say thank you to them? My husband actually wished me one too....I think my daughter prompted him ...but I took it for what it was....That's all I got but that's ok!
55 and still alive! hahahahaha
AVB
That's so good,man card from Google. I wonder if I'll get one next month, I'm often googling. You must have been pleased when your husband wished you happy birthday, prompted or not. I'll get a hand squeeze but no words. I hope you had a happy one.
💐 🍷🎂 X
All my kids and several friends came over today . And it was so wonderful. children running in and out of the house the dog getting to play with somebody. The brothers being funny and stupid with each other the daughter hoopin it up playing cards with old classmates; and an old friend who I have not seen in years, lamenting as she described her husbands stage 4 liver cancer....All she wants is that he can make it to May so that she can be married to him for30 years before he dies......and she is still a teacher trying as we do to make it one day at a time.....but for all of our lament we had a great time and steak!!!!I haven't had that in forever! and cake and no alcohol just raw fun....I almost can't wait til I turn 56...Lord willin' hahaha
AVB
Yeh! There are still good days. Why wait until your 56th though? I've had half birthdays, no presents or cards but invited lots of friends and relatives round just for the fun of it. I tell folk it is my half birthday as they always want to know what the occasion is.
It sounds as if you had a great time and your description put a lovely picture in my mind. I could almost here the laughter.
We all need days like that and more than once a year.
Happy Sunday.
X
NannaB thinking of you, you always seem so strong, I wish I was more like you, sending you a hug 💐💐💐💐💐💐 xxxxx
Thanks for the hug. I'm definitely not always strong but when I do have a wobble, it makes me appreciate the good moments more.
X
NannaB I agree with you, just laying in bed wishing I could sleep, so many things going through my mind, there are more bad moments than good lately xxxxx
When I wake in the night and when I first get into bed, I turn the radio on to LBC which is continual call in with the subject changing every hour. I put it on timer to go off in 45 minutes but I've never been awake when it turns off. Listening to callers giving their opinions on the subject being discussed sometimes annoys me, sometimes makes me laugh but always sends me to sleep without ever worrying about what is happening to C or me. There are enough hours in the day for me to do that and as I'm rarely in bed for longer than 7 hours, waking several times in the night, I can't lie in bed worrying. I need my sleep. Oh to lie in just once in a while. It's funny how things turn out. I was always a night person and C a morning one. I hated getting up and at weekends would stay in bed as long as possible with C getting up at the crack of dawn to do DIY, banging, sawing and whatever other noisy job he could find (I'm sure just to get me up although he denied it). Even the neighbours complained and said could he not start until 8.30. Now I am up at 6.40 every morning and C has to be woken up only to fall asleep again as soon as the carers have sorted him out.
Weird how things turn out isn't it?
X
Smiling reading all the posts, we have for years recycled our cards, they remind us of the love and fun of the past years.
Well nanna B, C will be smelling of lavender for a while, I have a hand held vacuum that I use on hubby after I trim his hair and beard, it's the only way and it always gives us a laugh.. 😀xx
Why didn't I think of that? I have always cut C's hair but I've never thought of the hand held vacuum cleaner. Mine will finally get more use after all these years.
Thanks for that.
X
Can't see how there's gonna be any memories to hold on to, guess I'm gonna need counselling!! Xx
Lovely!
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