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Discussion in 'I have a partner with dementia' started by kindred, Apr 17, 2018.
My god, I hope when the time comes I’m as brave as you. X
What a lovely thing to say, thank you. I never feel brave. I have had a lifelong motto, go into the dark, show no fear ... and it works under dire circumstances. But thank you and so good to hear from you. Geraldine aka kindred.
I love that motto @kindred...also love reading your posts hugs A x
Been a BIT OF A DAY. Sorry, forgot to say hello folks. Now where was I? Lifts out of action everywhere, and I know, I know, bit of walking up steps never hurt anyone, but they do me at the moment (bad hip, heavy bag). Endless having to learn NEW TECHNOLOGY (keep hoping I will wake up and it's all GONE AWAY, except our TP of course ...). Oh, stuff like that. Anyway, bounced as far as I could bounce into Keith's home (where his lift had gone wrong, too). Just in time to catch the last few minutes of Keith's alertness before he sleeps his way to the next cup of tea and a cake. When i arrived and said, here I am, he replied OH MY GOD ... so whether I look particularly awful or something, haven't dared look in a mirror since. There had been a morning of perfume testing, so lots of scent smells. Then the activity nurses set up for collage poster making and this was going great guns until the woman who was supposed to come last week to do music and movement turned up this week instead ... and it all goes from there. Do you ever get days like this, guys? Wasn't there an Elvis song about do you ever get one of those days, boys, do you ever get one of those days? when nothing is right from morning til night, do you ever get one of those days? Do any of you remember it or is it my mind playing tricks??
Time of day
Not to smile
Just the remnants
of a happy song.
I'll take that.
Anything, anything, blue eyed boy
is better than nothing.
Thank YOU. great to hear from you. Gxx
Hello again! When I arrived, and I went very early, Keith not yet down, so I thought great, that gives me a chance to give him a fantastic welcome when he arrives in the wheelchair. And as I had picked up a big bag of conkers and some in their cases, I went round to the other residents and we talked about their childhood memories of conkers. Great stuff, some lovely stories about conkering and getting chased by the police for damaging trees, stuff like that.
So anyway, eventually saw Keith was coming down and prepared to give him a hero welcome but he did not register me at all, nothing on his radar. The staff bringing him in gave me rueful smiles and tried to make light of it, as did I ... Anyway, happy to report that after two cups of tea and three custard creams, he suddenly came alive and shouted; WE MUSTN'T FORGET THE UNIONS ... So I immediately fell into my role as Union Representative and we discussed the negotiation of the deal. AND THEN he started to talk to himself and he said my name as part of the narrative. So I listened very carefully and he was saying that there are two things that Geraldine has to have, cheese and shoes. Now, guys, I only ever have three pairs of shoes at any one time and am indifferent to cheese, so do not know what this is all about!!
How would we cope without cups of tea???
Lovely autumn day here, sunny, breezy and so full of conkers and robins.
Thank you for being with me on this journey. I wish there were a better word than journey. Can any of you think of one for us?
with love, Kindredxxxxx
Dear Geraldine.... another wonderful heart warming post, thank you.
You make me feel ashamed that you look for the positive, and find the positive in where you and Keith are. Why am I so negative?
Journey? I have no idea of an alternative word, but journey doesn’t seem appropriate to me. I want to go on a journey to see my family, or to walk barefoot on the beach, or out for a lovely meal. I don’t want to be going where we are now, because I don’t want what is at the end of it. And there is no alternative.
Hey husband has been getting very upset and confused about his upcoming surgery and hospital stay. We go over the letter again and again. He gets upset about everything, we talk about it, he is pacified, and then he says again I need to talk to you. This happens so many times and we go over it again and again.
I don’t want to feel like this. I know that there are many thousands of people going through the same as I am. But I want to handle things better, I want to feel more positive, I just don’t know how to do that.
It’s like I’m losing myself as well as my husband. And it’s a roller coaster ride I just don’t know how to get off.
But, thank you for your lovely posts Geraldine. B xx
I wonder whether a very small, pocket sized fluffy toy might help your husband with this anxiety. Could you either choose something from the mementoes drawer, or buy something? Large chemists here often have things like that for children.
My son as a six year old became upset at school, leaving his disabled younger brother (and all the extra attention his brother got!) at home each day. We put a tiny corduroy elephant in his pocket. No one could see it, to tease him about it, but he could touch it when the school day got too much for him and he was missing home.
A few years later, a support group member was having the same problem with her little girl. She used the same remedy and it worked.
The object does need to be made special in some way. My friend and her husband sat their daughter down and told her how much they loved her and that they had chosen this special little teddy to remind her of that when she was missing them, and her disabled little brother, at school. It worked like magic.
A small token that your husband can finger now, and take to hospital with him, even if it’s not a teddy but a piece of soft cloth or something with your scent on it, perhaps, may comfort him now and can be with him then.
Sweetheart, so good to hear from you. You are not negative, you are under considerable strain darling. The situations we are forced to endure are too much for us. I made myself not more positive but more in control back in the worst days when Keith was at home by telling myself I was the manager of the situation not the victim of it. That usually enabled me to get by for another ten minutes, if you see what I mean.
Absolutely yes to losing yourself, I know so many of us on here have felt that. I felt I didn't matter, I was a slave to dementia and that was my role in life. It got as low as that. Please keep talking to us, it is so very good and valuable to hear from you. You are getting through this, it is such a tough time, no wonder you feel overwhelmed. All love, sweetheart, so good to hear from you. Geraldinexxx
Thank you so much...
I don’t know if it would work, but I will give it a lot of thought to try to find something that he would find appropriate. It’s funny isn’t it how we get into the mind set of a no win situation! I’m sure I could find something that would comfort him, but then I think he will feel I’m patronising him. Dementia is here, but sometimes not here. It’s like it is designed to keep us carers on our toes, keeping us guessing, trying to do the right thing to keep the peace and harmony. Something I don’t seem to be very good at a lot of the time!
Take care, and again thank you x
Thank you Geraldine... I love hearing from you. You make me feel that it’s ok to feel the way I am. I so welcome your kind comments...
Love B xx
Yes I see exactly what you mean. It’s the same here. On our toes is right! Maybe then an adult item, something meaningful to him, even a photo in a pocket frame? Or something he’s kept from childhood?
I agree though they are simultaneously aware and not aware, it’s so terribly hard, and incredibly
frustrating when meanwhile we really, truly wouldn’t mind getting a day off (for example) and trying to cobble our own lives back together! Right now my very helpful son, visiting from far away, is overdoing the help, wants to do things for OH that I simply don’t think are priorities, while meanwhile I just want to scream, What about me?!
I think a photo of the two of us might just be the thing. Especially for his hospital stay. Last surgery he came home very confused, then developed sepsis, and his confusion and delirium went off the scale. He thought the man opposite was in a Citroen car.
It constantly surprises me that other people are going through the same as me. It feels so unique, but of course it isn’t. So your comments and knowing that you understand, that you are experiencing the same trials and tribulations, is comforting.
I too have a family that live 300 miles away, they have their own lives, run their own business, and I don’t get to see them. Sometimes I think it is a blessing as I’m not sure I have the energy or inclination to be sociable for more than a couple of hours. Sounds dreadful doesn’t it. And now I’m ashamed of feeling like that.
Please take care and thank you xx
Folks, will post tomorrow on the astonishing events of today. Am feeling too tired to do justice to it, week has just caught up with me. With love and please come back tomorrow to hear how I lost my skirt and other goings on ...love and best, bear with me, Geraldine aka kindred. xxxxx
I hope you you are ok, I’m thinking about you, hoping you get much deserved rest, and sending love.
I hope you weren’t wearing the skirt at the time it was lost!! My mind is agog!
Hi I think the photo is a lovely idea. Fingers crossed it does the trick.
And may I thank you for helping me, with what you say about not having the energy or inclination to be sociable for more than a couple of hours. I feel exactly this way and thought it was only me. I was castigating myself; and friends don’t seem to understand (“Oh how great to have your son staying!” Well yes, it is great, but I’m so tired and flat when he goes - and I’m left with my OH!!! Eyeball to eyeball without even the dream any longer of a normal conversation with a functioning adult!)
OK guys, are you ready for this. You think you've read barmy on this thread before, well this will beat all. Let me just refill my cup of tea.
So, went in yesterday all quiet. Keith willing to sing a few military marches with me, well, like I said, boom di boom di boom but I'm past expecting much more ...
AND THEN the activity nurse on duty burst into the room wearing a bright yellow rabbit suit with ears. (It's supposed to be a pokemon character but a rabbit to the rest of us). And she jumped about and we teamed up and sang run rabbit run, my version -
run rabbit run rabbit run run run
Don't give the farmer his fun fun fun
He'll get by
with a co-op frozen pie
so run rabbit run rabbit run run run run run
And everyone who was awake brightened up, so we did it again, helping them to join in.
And then the big yellow rabbit went off to the other areas to see other residents and I settled back down with Keith.
AND THEN the yellow rabbit came back but no longer in rabbit gear and plonked the costume in my lap and said, your turn.
Split second while I think, oh my bad hip, my advancing years etc etc, but then I tried to put it on. Activity nurses wear trousers, I wear skirts, so off I go to the staff loo to take my skirt off and put the costume on.
Then I burst out of the staff loo as a rabbit and immediately one of the residents who up to then had been very depressed that morning actually giggled and said he wanted to put me on a lead. So I decided there might be something in this.
So off we go and this time it's me in the rabbit song, and we're singing run rabbit and most residents are awake now and having a good laugh and there's masses of energy in the room. And I go to sing it to Keith and the effect on him is pretty electric too. He laughs. I bend forward to kiss him and whisper in his ear, it's what we have to do isn't it? And he whispers back, yes darling, it is, it's all about you and me, you've done this very well.
Time to change out of the costume to cover my tears, so back to the staff loo AND THEN I notice mypretty pink skirt is missing. I know where I put it so look everywhere,l and have to put the rabbit costume back on while I search (am I going to have to go home in this, through the park? Oh well, they'll only think I'm a University Fresher after a night out). Eventually track it down behind a resident's head, so there must have been a secret raid on the staff loo.
Relieved, put it back on and return rabbit costume.
Then it's time for another cup of tea and a cake ...
What do you think, guys? xxxxxxGeraldine aka kindred bunny. More poems next week by request, thank you. I love writing them.
Oh good grief. I'm glad I'm sitting down! Were I a drinker, I would be gulping down a brandy, early in the day though it is. The thought of you travelling home in the rabbit costume is hysterical. Thank god you retrieved your skirt. It could only happen to you G. I'm glad you saw the funny side of it and were not hopping mad. Sorry, couldnt resist. Tell you what Bugs, you keep us all going here on TP. This is your best and funniest escapade yet. Wonderful! Thank You xxxx
Oh beloved one, that is so hopping and flippin great, thank you with all heart. Yes, I feel this is the high spot of my nursing home adventures. So good to hear from you, thank y ou! love and bestm, Gxx
Hi @kindred - as usual I've been reading but haven't been posting on your thread. I'm frantically busy and have not had much to contribute, especially as I have felt keenly from reading the many contributions, that if it is a spouse who is your PWD the dynamic has to be so very different from a parent who is your PWD.
Loved today's story - the Pikachu costume episode was hilarious - but by far the best bit was Keith's words to you in the midst of it all. Put a lump in my throat.
Busy packing, as I am off to Sicily tomorrow for a much yearned for week away. Visiting Mum this afternoon - she will not be happy. It's difficult to know what to do. She forgets my visit as soon as I have left the building and tells everyone she has no visitors, and yet she knows /senses? my absence on the rare occasions that I am away or unwell. I know all about love lies and know that telling her I am going on holiday will unsettle her, but I am unable to lie to her when she ALWAYS asks when I will next be there (usually every other day). My twisted logic is that if I am untruthful once and she realises, she will never trust me again. I feel for the care staff as she will be angsty all week thinking that I am dead (well that's what usually happens). My lovely daughter is doing her weekly visit tomorrow and will pop in after work to see Mum in my absence - but it makes little difference, she only wants me.
Recently Mum keeps talking about carthorses in her room?!? I keep a watchful eye as a while ago this was the euphemism she used for a certain bodily function Thankfully I think she means something else, but not quite sure what! I know the miniature pony visited, but that's hardly a carthorse. Oh and soldiers too! And a fat grunty pig (although I've worked that one out - it's an agency male carer she doesn't like!)
Got to go - lots to do. Take care and will be back soon!