The cost of a day out!: A day out last week... - PSP Association

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The cost of a day out!

JCRy profile image

A day out last week! To Mini Hollywood, the set for many spaghetti westerns, in Tabernas, an hour away. One of my favourite places.

How on earth I managed to push the wheelchair up and down those hills I will never know! My daughter and granddaughter were visiting from the UK, so a concerted effort by Ian was a must. However, it really has taken it's toll. Apart from going to church yesterday, he has spent most of the last week in bed. He is in acute pain in his back and legs and it seems that his voice is deteriorating rapidly. His face is becoming more drawn and social contact for him is something to endure rather than enjoy.

I am still able to pop out on my own for the odd hour or two because he has a red button, but it's not something I do gladly, as I know that he panics at times.

We still have a carer for 2 hours in the mornings, but we are definitely entering a new phase. I read Joy's post about a hoist. That wouldn't be practical for us here, but I am glad we didn't invest in Sara Stedy as Ian would not have managed it for long, I think, though I was tempted!

What with the diabetic neuropathy storming in upon his legs, raging tinnitus, stiff and painful limbs and a brain that is losing it's grip, it feels as though each day I am bailing out a sinking ship with a thimble!

I keep on smiling, though, as he is still my beloved and our lives have been so rich. We have the support he wants, and he resists help from friends at the moment. I am aware there will come a time soon when he is going to have to accept it! And so will I!

Just wanted to offload. Thanks to you all. I know you understand.

Juliet

20 Replies

Lovely picture! I have had many of your similar thoughts and feelings. Especially when you say that you keep smiling and that your lives have been rich. We need to hang onto the good memories and put one foot in front of the other. Some days are better than others and we do the best we can. I’m glad that you have help. I still need to work on that. Thank you for sharing and know that you aren’t alone. Oh how I miss a normal conversation!

❤️ I SewBears

JCRy profile image
JCRy in reply to SewBears

Yes....the conversation element is so hard. I thank God for being the Friend who is always with me. We have some great times together!

Of course we undestand Juliet! I am sure your day out didn't cause the decline in Ian, it was happening anyway, just him being so tired afterwards, made you realise what, on a day to day basis, you hadn't noticed. Sucks, I know!!! Please continue to take him out, if only for your own sake, you both need a change of scenery occassionally.

Sending big hug and much love

Lots of love

Anne

JCRy profile image
JCRy in reply to Heady

Thanks, Anne. Big hugs back.xx

aliciamq profile image
aliciamq in reply to JCRy

My husband takes a week or so to recover from going out. I have to tell my family we are pulling the drapes closed and just watching TV for a while.

Anne is right, this decline isn't on you. This beast of a disease is indiscriminate, if you check with an SLT there maybe some vocal exercises that may help with the voice concerns. Wonderful picture.

Tim x

Dear Juliet

Well done for keeping up the outings - hard work but so precious.

I struggled to push my husband in the wheelchair do we got a power pack which was amazing it suspends under the wheel chair and effectively takes all of the weight you just have to steer - maybe worth exploring?

Take care

Love Tippy xx

JCRy profile image
JCRy in reply to Tippyleaf

Thanks, Tippy. Will do.x

Well done Juliet. What a lovely picture for you to treasure.

I remember wondering if it was all worth the effort at times but it really isn't good to " play safe ". Much more important to continue as much as possible to be as normal as possible. That means continuing the good times in spite of PSP

Those are memories I treasure. But the loss of verbal communication is painful. Right up to the end we could communicate !!

Love from chilly England !

Jean xxxx

JCRy profile image
JCRy in reply to doglington

Not too chilly here, but got back from church yesterday and the winds had dessimated my patio! You need to understand we live on the end of a ridge half way up a mountain. We get REAL winds here!

I found the two armchairs, 10 cushions and the table 200 yards away in the bottom of one of the groves! The table wasn't far from them, but somehow the glass top of the table had landed intact on to the gravel a few yards away!

Spent most of the afternoon battling galeforce winds trying to get them back to a protected part of the house. I am still in amazement about the glass tabletop, though. Quite incredible.

Winds still howling and whistling through the window and door cracks. Hopefully it should calm down in a couple of days. The sky is a brilliant blue and, as always, the views make up for it all. x

doglington profile image
doglington in reply to JCRy

Sounds like Wuthering heights with sunshine ! Glad the glass table top survived.

XX

JCRy profile image
JCRy in reply to doglington

Absolutely right!xx

Hi Juliet, that is a lovely photo. Well done for keeping up the outings, memories you can both share together. I found the loss of conversation very difficult. W has basically no speech now, just a word now and again. He's in respite now for the 2nd time as we are getting floor tiles replaced in kitchen and utility room. So best he is out of the dust and noise.

All my love to you and your lovely man. xx.

One of the best traits of a carer is the ability to adapt. With these diseases nothing stays the same for long. It is good you get some "me time". That is a very nice picture.

Ron

Juliet,

What a lovely picture of you two! And the best part is seeing you out, in a public place, enjoying time together away from home. When we go out, which is seldom, it feels great, like we are a couple again. Keep it up!

I am sorry Ian is not doing well. So many issues to contend with. He has you by his side, lucky man. It does sound like you have had a good life together. I love his name, Ian. That's my son's name.

Lovely picture of you both. I think one of the hardest things is not being able to communicate properly. John knows everything I say but struggles to respond. He lives to go out and the carers at the nursing home put him in the car for me from time to time and Itake him for a drive but he is often just focusing to the roof of the car. Just keep up the trips as long as possible x

Juliet,

I've been thinking, in my slowed down brain, that over stimulation wears me down. I like an outing and like to visit socially. However, I've been finding it more difficult and exhausting in large crowds or groups. To visit socially and be successful, I need no more than 3-4 people, no TV or music, and much stillness without a flurry of activity.

I retired from working behind the scenes at Walt Disney World and still visit there quite often, but I pay the price with the exhaustion for a few days afterward before I can try to do it again.

Good to hear from you Juliet, I was wondering how you are.

Above all else, the misery, fear, struggle, Ian has YOU: he is blessed in that ❤️

Anne G.

I so understand your plight. Steve is in a similar state. The language skills have really taken a nose dive, but he can still walk with a walker for a limited amount of time. The wheelchair will come soon enough.

We try so hard to treasure and make memories but the cost can be so physical. We went to India last week (for a week) to take mums ashes. My husband is in India with dad still and when we left them on Sunday, Dad was showing increased swallowing issues and more difficulties with speaking. He has no regrets being there though. We try to do right by everyone but it can be so hard. x

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