On Saturday evening I invited 3 couples round for a takeaway Indian meal. Every Saturday evening is the same. I sit here with my darling husband who rarely speaks, watching Strictly and Casualty and I knew if I didn't do something it would be the same this week. I was feeding Colin when they arrived, bringing the Indian with them. We had a lot of laughs but I was up and down throughout the meal as usual. When we were drinking coffee after the meal, I had to use the hoist to get my husband to the toilet and on our return had the usual comments about how I do it etc, etc. then one of them asked if there was anything they could do to help. I jokingly said the was an Ikea flat pack drop leaf table that needed putting together if they fancied doing it. As it was 10 pm I didn't mean it but 3 of them jumped up and brought in the boxes they had seen in the hall. As they had all had a few drinks, I did wonder what it would look like and as I had read reviews on the internet that said it had taken 4 hours to put up I did tell their wives I had enough beds upstairs. We had a really good evening and their was a lot of laughter as we had one who wouldn't read instructions and one who had to lay everything out in regimental order. It was completed at 11.30pm and is perfect. I can now eat downstairs at a table (Colin sleeps in the dining room) and our grandchildren can do craft work and eat where I can see them. Although Colin had his eyes closed all evening he did his funny humming laugh in all the appropriate places and all our friends included him in the conversation. I will definitely have takeaways with friends more often.....especially when I have jobs that need doing.
Nanna B
I've noticed several typo/ spelling mistakes in the above and I hate posting errors but have to delete everything up to the mistakes to alter them. I've contacted the Healthunlocked technical staff who said they would look at it but that was two weeks ago and nothing has changed yet. Sorry!
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NannaB
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I do feel blessed having friends and family who are willing to help out when I need it and am grateful for all they do but still find it hard asking for help.
Totally relate to the above although we don't have a hoist yet and Chris can still walk (just). Our favourite thing used to be having groups of up to ten people to dinner which we would prepare together (I was starters and pudding, C did the mains). Now I am reduced to max three guests for lunch as it is all I can cope with. Yesterday we had a couple of friends to lunch and I actually greeted them with "I have jobs for both of you" - he sorted loose grab bar in bathroom whilst his wife sorted my knitting! I am also starting to ask for help when there are things that need doing that I can't do. Recently a tree came down in garden so another couple plus a third friend came round and chain sawed it for me and stacked it in shed. In return they got lunch. I hadn't thought about takeaway meals which are possible here, so you have given me a new idea. We have to find ways of doing things that benefit both the person with PSP and his/her carer. Time to get breakfast and get C out of bed.............and on we go.
We used to entertain a lot and like you, we did the preparation together and Colin was brilliant at clearing up afterwards. I do miss that. I do afternoon teas sometimes, setting it out like hotels do for a huge price. It doesn't involve much work, a few dainty sandwiches, cakes which can be bought and scones. Small groups only though. I'm not doing piles of sandwiches. It is good to have friends and family who are willing to help isn't it?
I hope this day is good for both of you.
Nanna B
Thank you for that kind thought. C got up in the night and I woke to a pool of milk on bedroom floor with cup (unbroken) in the middle - go figure. He had also left the gas on in the kitchen. So in yet another attempt to stamp out nocturnal rambling he has agreed to try and spend less time in bed today in the hope that may result in sleeping all night. Part of me is quite happy when he goes to lie down during day as it gives me time to catch up on all sorts of things without having to worry about him. I need to go to shop in town for knitting needles and he is going to come along for the ride. It should be lunch time when we return so that will do away with morning nap. And while we are out I shall come up with a plan to circumvent afternoon nap as well. Got to be constantly on your toes with PSP eh?
Not an option as we live in Turkey so pay for everything and couldn't afford an overnight nurse. We are doing well at the moment thanks to help from friends who live here/come out to visit for holidays. Our last visitor left a month ago and I was worried I would be on my own, except for local friends who all tend to come and go to UK, with C throughout the winter. But an old friend from the Ukraine arrives tomorrow to stay for a month or so. Says he wants to escape winter in Kiev but he is also very happy to help out. Once we enter 2015 it feels like spring is just around the corner and I know I'll be fine. C has now gone to bed and I have an hour or so of peace and quiet before I also retire. I confess this is my favourite time of day. A sweet little breathing space.
awwh,that is so nice,so good to have friends like that.Bet you were a good friend to others too when you could.We have been lent a device called a camel for getting Des off the floor and back on his feet.We had family round so I attempted to demonstrate,should have been on the Generation Game so much hilarity and all the time rude noises from the camel.The cat was frightened but so nosey she added to the laughter dashing backwards and forwards.It is not quick when I use it but quicker than calling paramedics.I remembered you when I bought 2 matching douvet sets last week We will look tidier now!Keep us smiling Nanna B
I can picture you all "playing" with the camel as we have an elk, similar but smaller I think. I have used it dozens of times and when I haven't managed to get Colin on it ( sometimes he doesn't bend in the middle) the paramedics use it as if they are not NHS, they don't have them in their ambulance. Our grandchildren love it. One one occasion, I got Colin sitting on it and inflated it but had it facing the wrong way so needed to disconnect it from the pump to avoid him tripping on the pipe. Unfortunately whilst trying to stop him falling off (it doesn't have a back rest) I disconnected the wrong pipe and with a big hiss it started to deflate. He thought it was very funny but trying to get it back one handed wasn't easy.
For months I thought we were haunted, so did the carers as every so often there was a deep sigh which we couldn't locate. When the paramedics used it they showed me a button on the pump and said it should be turned off if the elk wasn't in use as if it's on it gets rid of air. Our ghost has now gone.
I do hope your camel remains in his stable but it's good to know he is there if you need him.
Oh dear! We are past that stage now but you have brought back memories of wet bedroom floors, spilt drinks and from peeing in his bottle but aiming at it whilst standing up but leaving the bottle on the floor. I took up all the carpets in the bedroom and put down a couple of washable rugs. I also had a pressure pad under the rug on his side which set off an alarm when he got up. I tied a frog that croaked when it was moved to the bedroom door in case he avoided the mat and eventually locked the door. He would try to get out but it woke me up. That was when we were in the same room though so he wasn't locked in alone. Now he is downstairs in a hospital bed with sides. I am fortunate in that I now have a night nurse 5 nights a week and it is so good to have a good night's sleep but at weekends I have a baby monitor with a camera so I can see and hear if he needs me. On Mondays I nap during the day in a recliner chair near to his. You are correct in saying you have to be on your toes with PSP.
You have reminded me to pick up my knitting again. If I don't get on with it, it will be like last time; the jumper I was knitting for my eldest grandson ended up being given to his brother who is three years younger than him as I took so long to complete.
Yes, I definitely will. Did you get your dad's dental problems sorted? My husband has a wisdom tooth that causes intermittent pain. Our own dentist can't do anything as Colin doesn't open his mouth wide enough but a letter has been sent to a specialist and we are awaiting an appointment. Did your dad have an anaesthetic or have things settled down. I'd be interested to hear what has happened.
We're still waiting for the surgery. I phoned in September and they said it would be end of October or November but nothing yet. He isn't having constant toothache but it comes and goes & then he has strong pain killers. Hope it's quicker for you. We're waiting for Eastbourne, wondering now if I should have chosen East Grinstead - but maybe it would be the same. My dad's sleeping nearly all the time now - I'll let you know how he is if he gets to have it done though! Love to you. Morag
Thanks for the update. The dentist sent the letter to the clinical director, Preston Hall, Aylesford. East Grinstead would be our nearest clinic I think. We are near Tunbridge Wells.
I had the phone call this afternoon with the appointment for my Dad's teeth surgery. It's next Monday, 1st December - which is his 90th birthday, great timing! Fortunately he won't notice us move his birthday to Saturday or Sunday so we'll do that.
I'll let you know how we get on. I'm not lookng forward to it but can't leave him with decay under 5 crowns.
Yes, Eastbourne General with a consultant called Mr Moody. He will be first to be done so that, hopefully, he can return to his care home and his own room the same day. Because of his dementia he can be very confused in an unfamiliar place. I will be with him the whole time except for the actual operation. Although he doesn't always recognise me any more I hope that I can keep him reassured.
I haven't been on this Forum for quite some time but your posting did my heart good as well as made me chuckle, bringing back many memories of looking after my husband (for seven years) before he sadly died over 3 yrs ago.
I was constantly tired and lonely and found that 'so called' friends just stopped coming round when my husband's illness became too upsetting (for them) to witness. I don't blame them as I think people can feel awkward and embarrassed not knowing what to say. My family and grandchildren were also far south and several hours away by road so we rarely saw them. Phone calls eventually became fewer and from them. One of my daughters said it 'upset and depressed her to hear about her dad's illness'. She told me in so many words she didn't want to hear about it. So my life back then became more and more isolated.
In the end my husband and I relied solely on the friends we made through his Day Centre and later, through his Nursing Home where he moved to, for the last couple of years of his life.
People deep down DO have a good heart though and are only too happy to help if they are asked. I'm sure it must make them feel good too, to be able to help.
Well done to your friends and thank you and Colin for sharing that.
Best wishes, LadyMags
PS I have since remarried and my life has completely changed. I married a dear friend of our family; 8 yrs younger than I and kind and beautiful man. I feel so wonderfully blessed and I'm sure Richard somehow had a hand in bringing the two of us together.
It's so good to know there is life after PSP and I am so pleased for you both and hope you have a very long,happy life together. I'm sure your experience of PSP has made you look at life differently, I don't think it can fail to, so hope you are doing everything you have ever wanted to do together while you can.
You are correct when you say deep down people have a good heart and I know our friends want to be able to help, I've got to learn not to be so independent and give them more of a chance to do so.
How warming to read your story. I'm so glad to hear of the happiness you have found. When I look back on my life I feel sorry I haven't always helped before being asked. Many friends have offered to sit with Chris whilst I go out and ,so far I haven't taken them up on it but I now think I should, when he can still communicate so they are used to being alone with him.
I also will do like nanna B and have friends round for a takeaway.
I need to practice showing I need help !!
The children find it very hard to acknowledge the situation. They can't bear to see dad weak or mum not coping.
Best wishes. Keep us in touch with life after P.S.P. Jean
I'm just so uplifted by all of your posts, I'm reading them and always wanting to join in and comment but right now, in the middle of our house move to be near family I am just finding it so hard to do everything, those packing, making arrangements, my hubby always did everything, dealing with solicitors , him trying to help and falling, when we are settled and as normal as possible, I look forward to being here more, I think you are all great and I appreciate all the help here xx
A house move comes in the top 3 stressful things to do so to do it virtually alone with the added responsibility of a hubby with PSP, I'm not surprised you are finding it hard. When it's complete and you are settled near to your family, I hope you will feel proud of your achievement. I do hope the move goes smoothly with no hitches and that you will soon feel very at home in your new place with family who are willing to help you more nearby.
Very best wishes and don't forget to get back to us with an update when you are settled.
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