Good days and bad days. Today is a bad day. - PSP Association

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Good days and bad days. Today is a bad day.

HannahDaykin profile image

ARGHHHHHHHHHHH!!!!! - Just needed to let that out!

Dad is still shaken from the big falls he's been having recently and so are the rest of us.

It seems to be a very steep uphill struggle at the moment, as Dad gets worse.

Just having one of those days where you cry and think 'Why him?'

My brother (14) spoke to his youth worker and said how he's scared that he'll go into care (he won't, even if something happens to my Mum, then I'll be his guardian). It all just seems to be building up and I think we are waiting for the lid on this pressure cooker to blow off!

Its getting very scary thinking that we're nearly in the 8th month of the year and doctors aren't convinced Dad will make it to 2012. It's his birthday 9th August. What do I get him? I don't want to get him anything 'Super Dad' like because that's not us. I can't get him anything that would be "useful" because there isn't anything useful!!

17 Replies

I am sorry you are having a bad day today and your dad is still shaken from all his falls. I can't begin to imagine what you are going through, but try to stay positive (easier said than done, I know). Perhaps, if your dad enjoyed reading and had a favourite author, you could get him an audio book that he could listen too for his birthday...just a suggestion.

So sorry things are getting tougher for you all. It must be so frightening for you to watch your dad struggling like this. We all know that this illness gets worse but having to watch your loved one deteriorating before your eyes is really distressing. Try and stay positive and draw strength from the other members of your family. Wish I could be more helpful. You are in my thoughts and prayers. Take care and love to your dad and the rest of your family.

Love..........SuzieQ xx

Hi Hannah,

The bad days are the pits and it is not surprising that you are all still shaken up after recent events. I know it is hard but try not to think too much about what the Doctors have said. Take one day at a time. I had a Great Uncle who had a lung removed and was told he would be dead within 6 months, we laid him to rest some 40 or so years after that. As for your Dad's birthday, just make it a really special day - memories are worth far more than gifts.

hmfsli

Hey Hannah - the doctors dont really know - you wont know - I am still shocked by my dad going - we thought he had more time yet. Its funny - dad died on 8th Jan this year and we had xmas before that - what should we buy him - we bought him all the usual t-shirts, pants, 'dad' stuff to try to make it normal - he had no idea what he was opening - neither did he really care. But for his birthday earlier last year we took him horse racing - wrapped him up in his wheelchair - nappies, feed, all prepared and he really enjoyed it - far better to give him and you menories or a day out than something he has no use for. And dont think about what 'might' be - he may have years yet but whatever he has make the most of him because you really miss them once they are gone - lots of love xxx

none of us want to place our loved one in care home, but there was one fall too many, both of us injured, followed by a month in general hospital, Whilst Frank was in, it was discovered his blood was extremely low in soldium content which caused much the same effect as the PSP. I thought he would never be able to leave his bed again, but the home have managed to place him in a wheelchair and now the hoist is no longer used, with support he "walks" to the bathroom, where he has regular showers. I could not look after him, with all the carers in the world as wonderfully as he is being looked after now. I spend a lot of time with him each day and along with the rest of the family are amazed at his progress. He is 89 and was diagnosed in 2010. His birthday yesterday, the home made a beautiful cake and the residents sang Happy Birthday, and i truly believe it was a happy one for him.

Dear Hannah,

I am thinking of you and praying for your Dad. This disease can be so overwhelming. I finally got a hospital bed for my husband today and although it is so much easier to manage him in this bed, it is so difficult to see him in it. My young daughter and I cried. Today it seemed as though he would not make it thru the night as the day got so bad, but he is going to be okay and he is tough and strong and wants to live. Your dad can make it too. Try not to let your thoughts get the best of you. Try to remain positive and hold on to your hope. I am finding that keeping that positive attitude and hoping for a better day is helpful. Today was tough but tomorrow I am going to take him in the pool and watch him splash around and laugh. Try to do something special with him tomorrow. I always feel that Dave does better when I get him outside. I take him to the park for breakfast in the mornings that he feels stronger. He loves it.

I know how overwhelming it can seem to realize that you could become responsible for your Dad. I would never want that for my sweet daughter. Your Mum will remain strong and she will be able to take care of your Dad. Lets pray like that for additional strength for your Mum. When our loved ones seem to get so weakend and the Drs steal our hope it can seem hard to go on, but still go on and continue to fight and be strong. Your Dad knows you are there and he loves you and on his birthday just having you there make for a great day. I loved Debbies idea regarding the audio book. I would shoot for an outing if your dad is up to it. Take care my love and know that many people are thinking about you and praying for the best for you.

Love Judy

Dear Hannah,

Here is a GREAT BIG cyber hug from me! :-)

Keep strong, keep posting on the forum. We do absolutely understand how you feel!

Maybe some of you Dad's favourite tipple or something he specially likes to eat? I'm sure all he really wants for his birthday is to have his wonderful family around him.

take Care

Love Kathy xxx

HannahDaykin profile image
HannahDaykin in reply to Kathy

Thanks Kathy!! Big cyber hug back!

It's so great to know other people who know EXACTLY how I feel!!

We're steering away from food and drink for him and getting him the new Nottingham Forest shirt with his name on the back!

:) xx

Kathy profile image
Kathy in reply to HannahDaykin

Lovely!!! Look forward to seeing the pictures :-) x Have a lovely day with your Dad x

I was sad to read about your dad's falls and the effect it has had on your family.Things jog along for a while then a fall can knock the stuffing out of us can't it. I've read all the responses to your comment and agree a day out would be lovely. And if you can take photos and put them in an album your dad might get a lot of pleasure looking at it and talking about the day. The audio tapes is also a great idea (which I'm going to take up). I've recently started reading to my husband and I think he enjoys it. Take care and I hope you all have a lovely day on the 9th. SheilaN

HannahDaykin profile image
HannahDaykin in reply to SheilaN

Definitely knocks the stuffing out of us!!!

I almost don't want to suggest a day out because it's so hard on Mum...& Dad isn't small.

We've decided to get him the new Nottingham Forest shirt with his name on the back. I will take a picture of him in it to show you all!

xx

Dear Hannah, Hang tough and yelling at times is OK - If you have not worked with a social worker or hospice yet you may want to consider this. It is such a team effort and the caregiver especially needs to know it's ok to be angry, frustrated...your brother especially needs to know it's OK! It is also not fun to see a loved one fall and get hurt, it's so hard on them and hard on the caregivers trying to keep them safe. The one thing we tried to keep in mind is that it's not if they will fall - it's when they fall. Occupational and physical therapists were great helping up to pad corners, put pads down next to the bed, transitioning the loved one.

One thing my Mom loved as a birthday gift - a CD players - compact - we could burn her favorite music. Even in her last days, we would play the CDs and sing to her - she couldn't communicate but she could still smile....

We did have to finally transition Mom into a nursing facility, but we took her furniture, her favorite things, and we could all still be there...it was safer both for her and for us...falls and trying to get her back up was taking a toll on us, and it became actually dangerous for us since she did not have any strength in the latter times. All decisions are made out of love, and again, these were pretty much team decisions keeping everyone's best interest in mind...Good wishes - and a Happy Birthday to a Dad that raised a wonderful caring daughter..He is still super!

HannahDaykin profile image
HannahDaykin in reply to

Thanks, that's so kind of you. Even if the last line made me cry!haha.. sometimes I think it's so hard to understand that he is still my Dad when it doesn't always feel like it.

Thanks for the suggestions for presents. Me & my brother have decided to get him the new Nottingham Forest shirt with his name on the back! He used to take us to football all the time so that's something we can hang onto!!xx

in reply to HannahDaykin

Perfect! - I'll keep an eye on your posts and don't hesitate contacting me direct - kmshamblen@gmail.com....

Hi Hannah,

hope you're having a good day today

Fiona x

Thanks Fiona,

I am actually..I went for a run early this morning and I'm now cracking on with my assignments! AND...I have Dad's birthday present sorted, e & my brother are going to get him the new Nottingham Forest shirt with his name on the back. He'd love that, I hope he can appreciate it

Hope you're hanging on in there. Thoughts still with you xx

Maybe some of the equipment to guard against falls would be good. They were lidsted in another blog,I think it was Isaiah's. Lucille

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