Today we had a hoist delivered, not at that stage just yet, but we are getting ready, the house seems full of equipment, lucky the bedroom is big, felt really sad when it arrived, things are moving quick, don't like it.
George is still unwell since the puemonia, you can't still hear his chest, also coughing quite badly. Pyso came into today, they made him do quite a few things, he was so tired after, but I think it did him good.
I was thinking today, when we had a problem in the house, George would of dealt with all this, and now it is down to me, just love it, just to get a bit of help, our a little pat on the back, saying well done, you did a good job, our why did you do that, so hard worrying about everything. Yvonne xxxx
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Yvonne, I know the feeling, doing everything without help. I try to prepare ahead of time as well.
Last night was miserable for me. Don went into bed at 9:00 after he took his meds. I wanted to turn off the computer, let the dogs out and he kept on yelling fix my feet. He was in bed under the covers and there was absolutely nothing wrong with his feet. This went on 4 or 5 times and he said he would call the police because I wouldn't help him. P.S. by the time he let me go to sleep it was 12:30. I told him if he didn't behave he was going back to rehab and live there forever. He told me I was mean. Then to boot in the morning when he took his morning meds I found him standing at the thermostat for the air and heat. He turned it up to 90 for the heat, Good thing I discovered it.
Called his neuro and told them what he is doing and the nurse told me it happens quiet often with Parkinso'ns patients. She is going to speak to the Dtr about a med that might help him. It seems its a night time thing according to her. Anyone else have issues like that?
Yvonne you are doing an amazing job. Most would have given up long ago. You ate an inspiration to all of us. You are wise to get your stuff ready for when you need it. It all takes time to aquire these things and research wich works best in your space. I hope you will not need the lift for a while. we have one use it only when needed and to lower R into the deep tub we have for bathing. last night he had a feeling spell and we could not get him to transfer or anything so we used the lift. When he falls we use our ceiling lift to get him back into his wheelchair. hugs we ate lucky to still have them with us.
Well here's the pat on the back & the hug & the 'well done & thank you' that you so richly deserve. I'm sure George thinks you're a super star - even if he can't show it X
I sometimes think my brain will burst with all the things I have to do and remember. I am sure when I was busy working and looking after our family, as well as doing some voluntary work, I had as much to think of and do as I do now. Maybe age and PSP wears us down and removes our confidence. I think two people suffer from PSP, the patient and the carer. TLC from other sources are gratefully received by both. Sending hugs to all sufferers. X
The dreaded hoist, my heart goes out to you Yvonne! I think you are very brave getting one in, to be ready. I'm afraid, my head is firmly in the sand over this.
I am sure the physio will help with Georges breathing, which is bound it have a huge benefit.
We all know how you feel, coping with everything else in life, not just PSP. Every one of us struggle with the lack of acknowledgement for our efforts. If S would only squeeze my hand occassionally, or give me one of his precious smiles, that are reserved for his carers, who run in, rush him to get into bed and run out. HIS life would be so much better, as well as mine.
Well Done Yvonne, you are doing a brilliant job, managing George's illness and holding both your lives, together.
we were given a hoyer lift, and my guy was not at all bothered when they demonstrated how to use it. I don't dread using it, although I dread the point when we NEED to.
Better to be proactive than reactive Yvonne, this takes courage on your part.
There was a time that my husband could not do much, not because of an illness but he was always working. So I took on the role of mom, dad, handy man, gardner etc etc. While I was doing it I felt much like you, overwhelmed.
I hear you about not feeling appreciated and wanting someone to thank you, appreciate you or help you.
You are strong, you may not feel that way now but if you step back and loo what you have been doing you will realize it. I am sure George realizes it too.
We do what we do because we want to not because we have to, it would be easy to put George into a home and be done with it, but you wont. I appreciate you, for your courage, your bravery your determination and your willingness to not give up.
I feel like we all have a bond, a bond that goes beyond anything else in this world.
In Italian we say 'coraggio' which means courage to you....coraggio to you Yvonne
We ordered yesterday, arrival early January and Charles is happy, truly happy. He is ready.
I'll have a bed closeby to sleep downstairs.
Had the yard dug up yesterday for a water leak, roofers here to re-so roof, etc etc. workmen hit my car! I understand how you feel, doing it all myself and Charles is sad he can't help like he used to. Tears now.
Not a nice feeling preparing for the next stage but it is much better to have things in place when the need arises. I know what you mean about that horrible feeling that everything is down to you, I think that these are the things that get to us and make us weary, the weight of the world on your shoulders, or so it seems. Keep on keeping on Yvonne, hard as it may be.
You have been lucky to have the AIDS I n pace even before you need them .
We didn't and I supported John manually for a very long time hence my poorly shoulders and neck.
We got the stairlift in place and walk in shower ourselves . Should have had the stairlift earlier of course .
We have need to use a ceiling hoist for over three years now and I wouodnt be without it or the wheelie commode and hospital bed. All in the dining room .
I handle the hoist without any trouble and I am eighty next year .
After a while you get use to the house slings commodes pillows millions of them slide sheet etc . The room is full. Become the furniture. .
Don't say you can't do it. Have a go . Ask them to show you. .,take your time and keep checking what you are doing ,
Is this a ceiling hoist ? If it is don't worry you will soon get used to it .It seems abit daunting at first but after a while you wonder how you managed without it .I send V whizzing across the ceiling and raise and lower her into her chair /commode/wheelchair with the skill of a crane driver on the docks .I give myself points for accurate landings .Don't always get the max points but then no ones perfect , .
Its also abit like those arcade games where you have to manipulate a grab thingy to win a bear .I did make lots of mistakes at first like whizzing over the bedside table which hadha a mug of juice onand it and other things only for V's bottom tothe catch the lot and send them all over the floor ......kind of bottom skittles .
No George it is not a ceiling hoist, we live in a bungalow and the ceilings has a beam so you could not have a ceiling hoist. OT is coming in tomorrow afternoon, to show me how to use it, when needed. Yvonne x
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