Moments of joy

[Katet68]

I've just got back from a weekend at Mum & Dads and I'm pleased to report we managed to have some really lovely times.

I was a little apprehensive on my journey down as I just didn't know what to expect, the changes have been so significant each visit. Mum had just been to the Hospice and enjoyed telling me albeit haltingly, about the people she met and how she got on. We had a lovely dinner cooked by Dad (accompanied by the obligatory glass or 2 of wine) and we tucked Mum up at the scheduled time of 9pm giving Dad and I a chance to talk (in secret) before we also retired to bed.

The rest of the weekend was spent making my lovely Mum really giggle - she might have childlike humour now but she can still laugh with us. As Georgepa mentioned, we watched Elvis together with Mum making totally inappropriate comments, but who cares, it made her roar and Dad and me smile

Unfortunately we were woken on Sunday morning with Mum falling and I really do find that SO hard to cope with. Nothing prepares you for finding your Mum face planting the floor, bum in the air, not sure whether she's really hurt this time.....it takes my breath away. As Dad explained, sadly he's now so used to it it's not so shocking but I find it a tough one.

However, we managed, we watched ANOTHER Elvis film with my lovely Mum singing along and smiling away. A little potter around the country lanes after a delicious roast lunch and a visit from a splendid friend made for some very happy memories this weekend, some moments of pure joy.

I know on a day to day basis you carers have it beyond tough but I guess we all have to grab hold of those "moments" to give us some sunshine on the dark days.

[NannaB]

I'm so pleased you had a good weekend and was able to see your mum and dad more relaxed. You'll be able to look back on it when things are not going so well. I love our sons visiting us so think I know how they feel. I know what your dad means about getting used to the falls. I don't panic at all when blood seeps from my husbands head when he falls. It's almost like being part of a TV programme. I just do what I have to calmly. The thing that shocks me most is my reaction to falls. I think it is the inevitability of it all that keeps me calm, my bodies way of dealing with the situation. I'd probably have a breakdown if I reacted how I think I should.

I hope your mums falls become less but the downside is that it would probably mean she is less mobile.

Here's to many more happy visits.

X

[easterncedar in reply to NannaB]

I hope to find that calm place someday myself. Right now I seem to just be getting jumpier and jumpier every day. The slightest sudden noise makes my heart lurch and pound - and the adrenaline makes me cranky, too - poor lad, just what he doesn't need!

[NannaB in reply to easterncedar]

I used to have a recurring nightmare that C had fallen through the greenhouse. I won't describe it as it was so awful but I always woke up in a terrible state. We had a fence around the greenhouse with a gate and I told him many times not to go up the garden without me. One day I was in our kitchen with the back door open as I was about to do some gardening. C was in the lounge, or so I thought. Then there was a terrible crash of broken glass and I knew my dream had come true. Although my heart lurched I walked quickly but calmly up the garden expecting to see what I did in my nightmare and knowing it was all over. I found C leaning through two broken panes ( we had taken our old double glazed windows and leant them against the greenhouse glass for insulation) clinging onto the frame with a huge shard of glass pointing down at his neck and several spikes pointing up towards his back. Somehow I managed to pull all 15 stone of him up away from danger. He had a cut through his fleece, shirt and vest and the tiniest little scratch on his back that hadn't even drawn blood. Not like my nightmare. That was my turning point. I never had the nightmare about the greenhouse again and since, haven't paniced when he is lying with blood seeping from his head. I think I may be slightly abnormal but if things happen often enough I suppose you do get used to it.

Oh, I did panic a bit when he fell backwards into the pond, his legs still on dry land but head nearly under, tadpoles swimming around his face.

A neighbour heard my yells for help as I held him above the water.

X

[easterncedar in reply to NannaB]

Abnormal? Heroic! Yow. I clearly have been overreacting!

[Doglinton in reply to NannaB]

I hope I can get to that place. Chris doesn't fall a lot so far but he seems to often hurt his head. Every time I hear a crash I feel panic. I cope but I can feel my blood pressure soar ! I used to teach so I can appear calm but I'm not really. I'm also wary of my back giving up because he can't get up on his own. There is also the issue of him seeming to do what we have agreed he won't do as soon as my back is turned.He gets upset and denies its his intention. Really confusing. Its an emotional roller-coaster. Jean

[NannaB in reply to Doglinton]

Hi Jean. It's very common for PSP sufferers to do what we have agreed they mustn't. When Colin could speak I asked him why and he said he knew he was still able to do things I said he couldn't. He didn't even think there was anything wrong with him. He didn't feel ill and wasn't in pain.

Please think about yourself when Chris falls. I injured my back and my husband had to stay in a care home for 2 weeks as I was unable to care for him. The first time I dialled 999 for help to get him off the floor even though he wasn't injured, he begged me not to but when the ambulance arrived, the paramedics told me never to attempt to get him up alone. I have since been loaned an Elk and there is also a Camel available. They are air cushions that inflate in sections, gradually raising the person up to a high sitting position, enabling them to stand. I've lost count how many times I have used ours.

Take care

X

[zjillian in reply to NannaB]

I have never heard of that device???Is that real? Or do you have animals in your house doing the heavy lifting?

Jill

[NannaB in reply to zjillian]

Georgepa has an Elk as well. Of course you have to have a large garden to keep it in.

[Georgepa in reply to zjillian]

Actually wanted a camel thought it would be more fun in the local shop ! Seriously - ask your occupational therapist to provide one they are very back saving and as long as your partner hasn't been inured there is no need to get assistance from paramedics or others you can do it all yourself . Georgepa

[Georgepa in reply to Georgepa]

Sorry forgot you are in Costa Rica - idiot Georgepa

[Kelly55 in reply to zjillian]

Hahaha that made me laugh Jill

[Doglinton in reply to NannaB]

Thank you. Chris feels I am stopping him from doing things he feels he could do. When I point out the risk he gets upset. I hate the way this puts us into parent/ child mode and he feels chided. The fact that our children agree with me doesn't help. He feels un- manned by this disease. I will request an elk. It sounds good. We have a decent garden but its on a slope. Will the elk escape ? regards, Jean

[jillannf6]

hi when i fall over with a loud crash it makes my partner worry about me and he SHOUTS at me saying i have been stupid and foolish: his way of dealing with it but i cannot shout back at him and get v angry and frustrated and usually start crying as it is sometimes difficult to get myself up again..

such is life :it could be worse

my falls are now down to 14 daily as i am using a wheelchair inside and out now

lol jill

[Georgepa in reply to jillannf6]

It may be his way of dealing with it Jill but he shouldn't shout at you - it's not your fault you are down . We have been given an Elk which inflates to sitting position- rock hard and does help get you up off the floor and saves the carer's back .. Have you tried one? Georgepa

[jillannf6 in reply to Georgepa]

NO COS IT HAS TO BE PLUGGED IN B4 IT CAN BED USED AND I AM LIEKLY TO FQLL ON TH E BATHROOM OR KITCHEN LIKE THIS A.M 6 FALLS BE4 HE IS EVEN UP!

LOL JILLL

[NannaB in reply to jillannf6]

Hi Jill, we keep our Elk plugged in all the time but when I need to use it, I disconnect it and take it to wherever it's needed. It doesn't need to be plugged in during use. You can't use it on your own though. We have a remote door bell. If I leave Colin on the commode, he presses the bell when he wants me. He also has a wrist button which buzzes on a handset I carry with me. This was suplied via the occupational therapist. It's life line equipment but not connected to an outside controller. If you carried something like this with you, it would alert your partner and he could help you up.

Have a good day.

X

[Georgepa in reply to jillannf6]

No it's portable- you leave it on charge all the time and then you can then set it up anywhere - V's the same falls in the loo ,kitchen bedroom hallway and V shouts through a baby alarm when she falls in the night or early morning . You shouldn't have to deal with this by yourself . Georgepa

[zjillian in reply to Georgepa]

what is an ELK???????

J.

[NannaB in reply to zjillian]

It's an inflatable cushion. If someone falls you can get the cushion underneath them, get them into a sitting position and then pump the four sections up individually using an electric pump. It brings them up very high so they end up sitting on a very firm seat. As it is high, they can then be helped to stand. It's very useful.

Not so much fun as the largest breed of deer but definitely more useful.

X

[Heady]

Hi Kate, Glad you had a good time with your Mum this weekend! I'm sure both your parents are very proud of you. S's son, can't come near him, I suppose it's his way of coping. He was around yesterday and S went for a tumble, he didn't even help me get him up,. Perhaps he realised I had it under control and therefore would be in the way, which, in fairness he would have been.

Yes, it does test you hearts ability to keep pumping, when you hear that crash, wondering, if this is going to be the time, that serious injury has been done. S loves hitting his head, got a favourite bit of one of our radiators that he is trying to line his head up with, this is a man on Warfarin! Not clever. I have developed a sixth sense on what fall I need to sprint to, and which to fly to!!!! I'm sure your Dad will say the same.

Keep doing what you are, the worse part of caring for someone with PSP, is the loneliness and the huge sense of responsibility for your loved one. Just being there and sharing this journey, will be helping George. You can't help on a day to day basis, nobody can, just make sure he is getting any help that is available,!!! Best of luck , (don't suppose you are the easier person to help GeorgePa!!!!!!)

Lots of love

Heady

[Georgepa]

Umph - I am the easiest person in the world to help...................maybe

[Heady in reply to Georgepa]

I saw that little pink piggy fly as well!!! All I can say, you will be the ONLY person on this site that is accepting help easily!!!!

None of us do and we all need to have a chat with ourselves to correct it! The only problem, I don't listen to anybody, so listening to myself? No chance!

May be tomorrow!

Lots of love

Heady