PSP Association
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Difficult three weeks

My mum died on 10 October and Dad followed her yesterday afternoon. We knew Dad was going last week and spent time with him. That week John took a big downward turn and became unable to walk with the zimmer. Dr came and is referring him back to OT. I was fortunate enough to borrow a wheelchair and he seems to be doing ok with it. Paintwork is suffering. His speech became very difficult to understand as well. So huge things happening. My parents were 97 and 94 and I’m dreading John being next. Nothing more to say really just wanted to update you all and see if anyone has any helpful suggestions for John. Xx

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Difficult is an understatement. Overwhelming would be more the description. So sorry to hear. So many hits at once. No time to adjust or grieve. I know this is very hard. I wish you well.

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Thank you. I do feel overwhelmed. Xx

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Goodness me what a dreadful time for you with so much to cope with. My best wishes to you. Jx

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Thank you. Just about holding it together but will need to get some respite after funeral. Xx

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I'm so sorry - you have such a lot to deal with. I wish I had some helpful suggestions or comfort to offer. I can only wish you the strength to get through this and hope that following your dad's funeral you get the respite you need. Xx

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Hi Vron, I’m so very sorry to read about your father, I already knew about your Mum. Strange or a blessing that your father followed your Mum so quickly! Regarding John, get all the help you can, from St Catherine’s hispice asap and get the neuro team to send in physios and get the neuro team or hospice to contact wheelchair services urgently! Does J have a hospital bed? If not another referal to the neuro team is needed. In the meantime what support are you getting? I imagine, none! But you do need some urgently! Also ask hospice for possible respite for J and ask if the home team can come out and look after J to give you some time out! Hugest hugs x

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Hi Amanda. I’m getting help now and SS are letting me have 6 week’s respite a year altho I have to pay towards it. Once I get this over I’ll take a break. We are seeing John’s neurologist on 13th so I hope we get some helpful advice. John is safer walking with one of us rather than the zimmer and he’s managing the wheelchair. Hope you and your mum are bearing up. Take care xxx

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Sending big hug and much love.

Lots of love

Anne

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Thank you I need them. Xx

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Vron I am so terribly sorry. You have had such a lot to face and still have. At least your Mum and Dad had a long life and are now together again? Not that it doesn't mean you are not going to miss them both.

John sounds as though he has had a step down. It comes out of the blue as I am sure you know? Do as advised by Satt and get help for him and some respite for yourself. If anyone ever needed it it's you.

Hugs to you.

Marie x

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Thank you. I need to get my parents ‘ funeral service over and then I’ll have a break. Xx

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No wonder you feel overwhelmed. You will need time to get yourself together. Make the most of whatever you are offered. I found a hospital bed really good.

Thinking of you, Jean xx

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Thank you Jean. We now have a Hospital bed. But I find that John’s common sense is so impaired. He doesn’t see risk until after the event. And his perspective/spatial awareness is so bad that this leads to really risky behaviour. I’m so tired absolutely banjaxed. Xx

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I so well remember that stage. It is so stressful. I remember Chris would agree with me and do something dangerous immediately.

Big hug for you, Vron xxx

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Xxx

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All I can really do is offer a big hug.

The hospital bed definitely helped us, I think David was a bit more comfortable in that, and it was definitely easier to get him into it.

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Thank you we have one but John doesn’t really see the point of it at the moment’. Xx

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That's exactly how David was to start with!

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Yes hospital bed is a must, George won't have both sides up, but he is safer in a hospital bed, just insist he had one, so much easier. Sending you a big hug you need it, with all that you have been through. Yvonne xxxx

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Im so sorry to hear of your loss . I know its really hard to deal with and take care of your husband. My husband is have trouble with talking also.

I pray for you and your husband that God will grant you peace. Love you

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Gee Whiz!!!!! Sending you hugs🙂

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Thank you all so much for your kind and helpful replies. It means so much to unload on this site. Xxx

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Whilst it’s always sad to have parents or anyone move ahead to another dimension , the positive aspect would be that you had them for a long while - more than most other people. That’s what I tell my mom who is 75 and lost her parents 3 years ago in a short span .

May god rest your parents in peace . It’s trying to tide through this and having to take care of John esp when speech is a issue. I hope his food and calorie intake can be managed .

God bless you and give you the strength to take care of John. Wishing lots of energy to John. Very trying for those going through PSP.

Take care .

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Thank you. Xx

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So sorry to hear that you're going through such a dreadful time Vron. It must be so hard for you.

Vicki x

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Oh bless you my thoughts are with you xxx

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Sending you a huge heartfelt hug. Xx

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Your Mom and dad both in the same month....I am so sorry, Jeff166 is right it's not just difficult but overwhelming. I must say I am semi speechless....How do we cope ....My mother died and a few months later, my husband was diagnosed ...not a great year so many years ago. Not been that great since, but I'm getting along. Now, it's an effort to make sure my kids don't suffer too much by keeping a stiff upper lip. I do pray that anxiety and sadness does not overtake you. take walks when you can get carers when you can cry if and when you need to....

((HUGS))

AVB

Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.

Isaiah 41:10

Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.

Psalms 23:4

1Peter 5:7 casting all your anxieties on him, because he cares for you.

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Thank you. I could not survive without the support of my faith and church x x

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So very sorry about your parents tough time for you and family right now will praying for you keep your chin up and take good care of your self. Nettie

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VronB,

I am so sorry for the loss of your parents. I miss my Mom and Dad so much and I find myself thinking about them a lot these days, as they would have been a great source of support for me and my wife following her PSP diagnosis. I lost my parents 5 years apart. Losing both in the same month si just dreadful. I am very sorry. And all this while being primary caretaker for your husband. Sending my thoughts and prayers. Dick

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Thank you Dick. Xx

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