Well Tuesday I said my final farewell to Archie I gave him the send off with bagpipes that he wanted
All our friends came to the wake but none of his family did cause they thought I was wrong in what I did with funeral arrangements and to be truthful I wasn’t all bothered seeing that I can count on one hand over 2 years when he became house bound
I’m glad to say good riddens to bad rubbish
I’m now trying to adjust without people in my home 24/7
I would like to say that I thank everybody on here with help and support you have given .you all do a sterling job of care to whoever you look after . I know things can be very very trying but take my chimney to let the steam out which I always found useful
I’m still going to come on here to see how your all doing cause you don’t get rid of me that easy lol
Love hugs and kisses to you all
Sue xx
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Suebatt
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Nice to know you'll still be there for us when we need advice, it's a comfort knowing others can be replied on to come up with answers quickly, .. hope things go smoothly for you now , you deserve some relaxing days now ...Brenda xx
Thank you Brenda I will always try and help if I can
Yeah I’ve come down to Cambridge with my grandson for a few days and I must admit that it’s very strange as I’ve not been out really for best part of a year so taking things slowly
Sue so happy the funeral went well, sounds amazing bagpipes how wonderful. Family for you, it’s as they say you can pick your friends but you can’t pick your family. There loss if they didn’t visit for over 2 years, they sound like they are a waste of time. You did well for Archie he would of been proud of his send off, you are a amazing lady Sue, you looked after Archie so well. Sending you a big hug, so happy you are going to stay with us. Yvonne xxxx
Morning Sue, I said goodbye to my darling Leon yesterday morning at 8.30 a.m.16.06.2018. when he took his last breath. No frills, no bells and whistles, funeral for us. Simple cremation, then lots of celebrations as I continue my journey around Australia without him in the flesh, but still in my heart. Love and hugs to you and all the support from this group Marg Halliday Howlong N,S.W. Australia xoxo
Glad your service went well Sue, and very glad you will stay on and check in :-). From what I can tell the Survivors have so much to offer each other adjusting to the new normal of life without the loved one, as well as advice for us still struggling.
Hi Sue, glad the funeral went the way you and Archie wanted it to. It's so, so important to have that final memory that you did everything right. Sod his family, I have people like that around as well. Thankfully, they come near me, as much as they did when Steve was ill. Never!!!
Now it's your turn. Take it very easy. Getting over the physical toll of caring, takes a lot of time. Much less come to terms with his passing. It has just as many ups and downs, as life with PSP. For a while, it really is day to day, even, minute to minute. Only now, 18 months on, can I honestly say, life will go on and I am looking forward, but to what, that I can't answer yet.
Please know, that we are still here for you, us survivors, as AnneG has said. Or the Old Guard, according to Jean! There is something still that others do not get, about greiving after PSP. To me, a loss is a loss, but I know from the group of widows, I belong to, they seem to react differently to me, after I tell my story.
Of course, there is always the knowledge, you learnt the hard way, that needs to be past to everyone else. We all have a duty to help others, as people helped us, in the beginning of our journey.
We are all in this together, no matter what part of the journey you are on. If you are new to this site and reading for the first time. Don't be frightened about the future, know you have found a place that will get you through today.
I think we Old Guard have been toughened by the long haul we've endured.
I remember long ago, Anne, us agreeing at how we had learned to be able to fight for our loved one and finding new aspects of our personality - not all of which we liked ! I think it being a rare disease changes things.
I'm just getting back more energy. Going on a short break to Lisbon with my daughter.
I remember that Jean. It's very weird, still trying to get to know the new Anne. The inner strength that PSP so kindly showed me I had, is still there. Something I never knew about myself. Certainly got me through some dark days. The bad aspects, well thankfully, they have crawled back into their little hole. Don't need them at the moment. Still I know they are there, should I have the need to fight again!
I'm off to Rome on Wednesday. Have a good time in Lisbon.
We all on here have had to struggle and cope with this crap illness one way or another and I must admit this is the best place to vent or find information out cause most of the so called professionals didn’t know what’s what
I know that this might be silly or heartless but I was prepared for the day he passed it hurt but thankful that he would rest now I won’t say pain free as that was one thing he never suffered with .
I’ve had everything taken away and it ok to walk into his bedroom without having to see the Equipement
That's the first thing I did, was shove all the crap into the spare bedroom. Don't mind his belongings being around me, still have some, but any reminder of PSP, that followed him out the door!
You are not silly or heartless, one thing we all are, is prepared for the end, even if it does come as a shock.
Hi Sue. It sounds like you gave Archie a wonderful send-off. I will never understand anyone who thinks they have the right to interfere with the next-of-kin's wishes. You did what you knew Archie would want. My husband died of CBD 17 weeks ago and there is plenty to deal with without having to cope with inconsiderate relatives. Take it slowly and accept all the help you are offered. Be kind to yourself and God bless you.
Sounds a great send off for Archie, it is so childish of relatives to challenge the way you want to say your final farewell and refuse to attend, it seems they really had no right to have any say in the matter if they hadn't even visited him during the latter part of his illness.
I too find it very strange without all the comings and goings of carers, medical people etc and still can't get used to leaving the house when I want to. I am taking things steadily and not overloading myself with seeing people, going out etc. I sometimes like to be alone with my thoughts and try to make some kind of sense of the last four years and hopefully let it it fade into the distance and remember the good times.
I’m glad to hear you were able to get Archie the send off he wanted. Anyone who can’t accept your doing things your way is, well, not worth wasting time/energy on! Especially if they weren’t on the front line or any soorce of support for either of you. I’m on day12 without my mom, and it’s a big hole to fill. I hope you find calm and strength in whatever helps you begin to approach your Archie-sized void.
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My question is: does PSP speed up in later stages?
I’m new to the site. My husband has CBD
Halucinations and confusion
experiences with care homes for residents who have PSP
He said, "I'm dying today."
