Hi All.

How are all of you holding up? Those who are where I am (having recently lost the ones they love), and those of you in the trenches (dealing with whatever PSP has decided to bombard you with on a daily basis).

Somehow I managed to get my act together today and seek legal counsel. Thank God I did! The lawyer was appalled as I gave him the details of my circumstances. Legally I do not even have to acknowledge any financial inquisitions for 60 days and do not have to take any action for 6 months! His family began pressuring me to make financial decisions the DAY after he passed.Really. I have been in the twilight zone. I cannot even think coherently let alone make decisions that will affect the rest of my life. It comes down to this: no one has a clue what our daily lives are like unless you have lived it. Period. Don't tell me what an "angel" I am and then ask me to account for every penny I have spent in the last years caring for him. They do not have a clue. One day. I would give them one day in the life of a PSP carer in any stage and they would not make it past noon.

So I advise all of you, regardless of what "stage" you are in, due your due diligence! Power of Attorney, living will, DNR, trusts. Whatever your circumstances, no matter how beaten down and exhausted you are. TAKE CARE OF BUSINESS! You think you cannot afford to? You can't afford not to. Do your homework. The last thing you want to deal with when your heart is breaking is deal with legal/financial circumstances. Don't take anything for granted. Especially if circumstances are complicated. You'd be surprised how many are.

I always expect others to conduct themselves in the world the way I do and am inevitably disappointed. Except for all of you who constantly reaffirm that there are good, kind, true people out there. I thank God, the universe, (whatever you believe) everyday, for the support I receive from all of you!

Whoever you are, whatever you are enmeshed in at the moment (why does crap come to mind:)? I send you all virtual love and massive shoulders to lean on and hugs.

Take care of yourselves,


27 Replies

  • Hi, Jayne - How good of you to think of us with all you are going through - just awful that his family is so disrespectful and unappreciative of all the sacrifices you made for your husband. I'm glad to hear you have legal advice to protect you. They aren't near you, right? Can you turn off the phone and ignore them? You are a strong person, I know, but please take care of yourself as much as you can. Hugs back to you, Ec

  • EC, my family is back on your coast. His nearest and dearest are in the state. His children are scattered. Just trying to do my best but apparently that is not good enough. This is worse in many ways than I anticipated. I expected relief of some sort but it has not happened. Think once there is a service there will be closure. Take care of yourself and your guy.

    Best, xx Jayne

  • Hi Jayne, I have to agree with you, it is crap. My husband died on 29 August and I am still trying to sort thing out. His awful children have just ignored me altogether. Even accused me of not telling them how I'll he was! Just how ill is terminally ill? All so awful. Thank goodness there are some lovely people out there. I had thought I was prepared but have since discovered that I was totally unprepared for this 'life' on my own.

    Love to all of you and many delayed thanks for your very kind messages after I lost the love of my life.

    Chris xx

  • Jayne why do people act like this were money is involved, when you are caring and trying to do your best, you never see them, as soon as they pass away, everything changes, all because of money, makes me so angry. Look after yourself Jayne glad you have a solicitor on the case. Yvonne xxxx

  • Yvonne, I don't know why this is. But I know who I am and if PSP has taught me to never back down (at least without a fight:). My solicitor is wonderful! Someone up there is looking out for me! How are you doing?


  • Jayne we are ok, George has another chest infection, but we are slowly getting there xxxxx. Glad you have a solicitor helping you xxxxx


  • Chris, it is as if when the wind in knocked out of you, it is like they then sucker punch you in the gut. I am so sorry for your loss and your struggles to adapt to live without your love. I am overwhelmed with things to do so it serves as a distraction. But when I take a moment it hits me yet again. Two weeks today.

    Take care of yourself,

    big hugs, Jayne

  • I've got step children like that. No doubt I will be accused of the same. As one lives a couple of miles away, why should I!!! If he chooses only to visit his father, every blue moon. That's not my problem. So why do I feel so bad about this????

    Lots of love


  • Why do you feel so bad about it ? If they choose not to visit ?

    love, Jean x

  • That's the problem, I don't know. Am beating myself up big style. Tried talking to my counsellor, but nothing came of it. Will bring it up with my new music therapist, when he comes of long term sickness!

    Lots of love


  • Just a shot in the dark as I know no history, but do you feel that you have come between him and his children ? And may be taking on responsibility for that ? They are adults and are responsible for themselves.

    Love, Jean xx

  • Could be?

    Lots of love


  • Thanks Yvonne.

  • Hi goldcap. Some people are the pits and where money or property is concerned there's no knowing how low they will stoop. You know you did the very best at all times for your loved one so hold your head high and try to ignore them. It's hard I know but don't give in to any bullying or other nastiness from the family. There are good people out there who will help you sort out your business. I agree totally about sorting everything out and taking nothing for granted is a must for all of us. Good luck and take care. Marie

  • Thanks Marie. And there is one thing I know for sure. I took amazing care of my husband day in and day out and I will not allow anyone to diminish my efforts over the years or bully me into doing what I know in my heart is not right. How are you doing? Hope you are coping and taking care of yourself.

    Best, xx Jayne

  • I'm doing ok jayne thank you for asking. Things are moving on here but a way to go yet I think. Today I'm down a bit as hubby uncharacteristically said he needed me like a hole in the head. I know it's not really him Saying that but it's still hurtful to hear when my own life as was has all but disappeared too. Still, no more moans, I need to get engrossed in a grisly murder story to cheer me up ☹👹 god bless. Marie

  • Know what you mean. My husband is often the same. I can't help feeling resentful, although I know he doesn't mean it. We have nearly lost each other !

    love, Jean

  • Psp is a lonely cruel life for all of us. I thank God I have my sister close by who gives me a big hug and a cake/or glass of something to bring my spirits up again. Sometimes I think back to the times when we would laugh and share a joke together. Sadly they are just memories now. But enough of this depressing stuff. I will raise a glass later to myself and all the other wonderful caring carers out there in PSP land. Cheers. Marie

  • Raising a glass too !

    love, Jean x

  • So sorry to hear you are experiencing this. There are good and bad people out there and, sadly, when we are vulnerable they can appear.

    I hope you have some " goodies " there too ?

    You know you have done all you could and more.

    Good luck, and a big hug, from Jean x

  • Yes Jean I have some,"goodies" ! Although the,"baddies" appear to be more focal right now lol. There is one thing I am very sure about in all of this is that I did do all I could. And he would want me to stick up for myself! He advised me to do this when he could still speak. A big huh back to you as well.

    xx Jayne

  • HUG!

  • He certainly would. Battle for your future with his blessing, Jayne.

    love, Jean xx

  • Thank you, food for thought! X

  • Sorry for your loss Jayne....I got off the site a bit after Madeline passed ,I,m roughly still ln the same place 18 months into the process ,don,t worry about the out-laws ,I guess we married the white sheep of those families ,great advice ,when speeding into a brick wall you need all the protection available to try to survive ,love to you Rollie

  • Hello stranger! lovely to see you are still with us, if only occasionally.

    Sending very big hug and much love.

    Lots of love


  • thanks for that jane its a wake up call mate

    time to review my will peter jones q.l.d Australia.

You may also like...