OK, I have the night from hell emotionally. Don't want to go into that. What I do want to share is my thoughts of how my therapy is going.
The guy who is my therapist is very good. I am really enjoying my time with him. There is no patting me on the head with the "there, there".
What is coming across very loud and extremely clear, how much benefit I am getting from this site. Everything he says, I can reply, well yes I know about this, I have thought about that. I understand this is going to happen. He keeps going on about how rounded I am, how much strength I must have, which we all know is a load of codswallop. I have got everything from you guys.
From NannaB, Goldcap, Easterncedar, Jimbo, Strelley, Jzygirl,Alana, Dorothy, Peter Jones, to GeorgePa. Sorry I can't name you all, I know some names most will not recognise, they are all people who have got me to where I am today. Jimbo, God bless him, for putting me straight about what stage S was. Strelley for his knowledge. The others for their strength, which I have absorbed and used to S's benefit.
So why, oh why, is my darling husband saying to me tonight, " I have told you a thousand times, stop bullying me!!!" via his writing board. Just because I asked for clarification about his Peg. Today he stated to the hospice, he wants one fitted, or well maybe, I think about it. The time for that crap is running out, sorry, that sounds uncaring. I do care, but he can't survive much longer on the little fluid he is consuming and now lack of food. I am fighting so hard to keep this all together, only to have it thrown back in my face.
I know, one more more reason to let the professionals look after him.
Anyway back to my point, this site is SO IMPORTANT to us all, it is actually having a profound difference, mentally and therefore physically on us. Make sure, anybody you come across, via the local support groups etc., that they join us ASAP.
Lots of love
Heady
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Heady
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Hang in there! Maybe it's not a fair comparison but my husband gets like an unruly child. He has other health issues so I have to remind him to take meds and eat. I am told all the time that I am bossy and need to leave him be. Very very frustrating I know. I really think it's the PSP and his moods because of the PSP.
Glad you have therapy. Both my husband and myself are going to therapy. I'm also on antidepressants which helps keep me a bit more stable.
I agree, this site is definitely a lifesaver.
Hospice tells me that it is normal for the nourishment intake to taper off. It is the body's way of preparing. Hard for the caregiver but not so much the patient.
Heady well said, I think I would of gone to peices without all these lovely people, you have been an inspiration to me, yiu come up with so many answers to anyone's problems, I suppose we all look out for each other. Thank you everyone on this site for all the help you have given me over the last couple of years. Yvonne xxxx
Yes Heady. All you lovely people got me through. If the hospice are talking to him about the PEG, and I expect they have several time before, he knows what it entails so perhaps he has decided he doesn't want one. I'd let the hospice "bully" him. C said no many times before finally agreeing but the hospice did the pushing. I told him it was his decision.
What would we have done without this site? I dread to think.
Heady - totally agree with you. what's so amazing about this community is that all the strength & knowledge you have gained through your experience you are now sharing & passing to me & others. A great comfort & support to us all. Hope that I will be able to endure as you guys have & do the same for others one day X (grim though the whole bl**dy experience is!)
Here here Heady, this site is a life saver I don't know what I would do without it. Sorry you are going through the mill and that therapy is helping. my therapy has finished for the time being but therapist at the hospice said that I can call her for more sessions when I need to. I miss not being able to outpour all of the intense feelings that this crappy disease forces up to the surface.
As for the PEG, I'm dreading when Ben can't manage to take food and drink because of choking, he is definitely getting much worse and adamant doesn't want PEG fitted, do you think S will change his mind? People on the outside just don't understand what we are going through do they! They see snippets of the problems but not the whole picture or understand the emotions involved with this disease. I hate hate hate it but know Ben probably hates it even more.
Therapy can be helpful but no one knows PSP and all its challenges like the members on thus site. Agree you guys have helped me do much I would struggle so much more eiytout the support hints and guidance I get here. Bless them counsellors do try though!!
I raise my glass to everyone on this site as well. When I talk to people that are going through PSP/CBD and many other deseases I tell them to join the site. The ranting, information, the love and the comfort in sharing stories that no one but we can tell.
You are so very rght Heady, this site has gotten me through so many ups and downs, I get the real deal here, no sugar coated bull that doctors tell us thinking we know nothing. I am sure if everyone on this site would meet with specialists we could teach them a thing or two or four....
As for your struggles I am sure S knows your doing good by him even though he thinks your bullying him. You are one tough cookie and no, you do not sound uncaring you sound like a loving wife who is so very tired of everything to do with PSP...
Bless you Heady! I agree without this site and all of you I'd be totally screwed!! So I thank each and every one of you for all your input, support and kind words! No one gives us the support we need apart from everyone on here! So cheers everyone!
Heady I suppose S will make the decision on the peg in his own time.....but I do hope he hurrys up with his decision, but, as we all know, a Psp patient cannot be hurried.....hugs darling x
Hi...I have just joined this evening...my husband was diagnosed last month with PSP and Parkinsonism after two years of trying to tell his MD that something is wrong and being told it’s part of the aging process.,,, very frustrating...looking for information as to what’s ahead for us and me as his caretaker...I see the term PEG...what does it means ??
I am so sorry you have had to join this site, but welcome all the same. It is an extremely evil disease, but I am sure you are well aware of that already. Unfortunately my husband died very soon after me posting this thread.
My only advise to you is, make sure you get all the help you need, plenty of rest and "me" time. You are the most important person in your husbands care, therefore have to be at the top of your game and this is not possible if you get it into your head, nobody can look after him better than you. WRONG! Anyone can do the physical side, only you can be his wife, telling him you love him, the most important part of his care.
Stay on this site, it will be a lifeline to you. We tell it how it is, warts n all. Some will frighten you, lots will make you laugh, most of all, you will realise you are not alone. Many like me, have stayed on this site long after our loved ones have gone, we still need and want the support. It's like a whole new family that care about you, know exactly what PSP is all about and understand the anger, frustration and the never ending tiredness you feel. Never be afraid of asking any "silly" question, nothing is silly in our book, if you are concerned, then it's extremely important! We all rant and rave, kick and scream about PSP, never think we judge, all too busy feeling exactly the same.
PEG, is a feeding tube that is inserted into the stomach, when the swallowing goes. Some choose to have them inserted, others like Steve, chose not to. Steve was starting to change his mind, but I think he knew the end was close and got frightened, it was all far too late by then. This is a discussion you need to have, sooner rather than later, with your husband and the professionals.
Please keep reading and taking part on here, the more you get to know us all, the more comfort you will receive.
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