Just needed to have a "conversation" with those of you who know what caring for someone with PSP can feel like. Yesterday was a stressful day. I had to take my hubby with me to my pre-admission check at the hospital where I am to have day surgery next week. Unfortunately there was nobody available to stay with him while I went. We were there ages. I was a bit thrown when I knew details of what next week will mean for me, and basically (without going into detail) it is likely to "wipe me out" for a couple of days at least. My daughter will be coming from Wales to stay for a couple of days so Tony will be cared for.
However, we arrived home from the hospital and Tony was desperate for a wee. He uses a urinal bottle which means he no longer has to go upstairs to the bathroom. No problem I hear you "say". Unfortunately in his haste he dropped an almost full bottle on the hall carpet!! You can imagine how I felt. He was upset and so sorry, but I was tired and hungry and I just lost it completely! I ranted and raved at him and then felt very, very guilty at my reaction. All this happened before I had even take off my coat. I apologised over and over again to him once I had calmed down a bit, but I know this sort of thing doesn't help him and I know he certainly didn't mean it to happen.
I'm sure I am not the only person who gets so tired some days you could cry (which I often do). In a previous post some weeks ago I ranted on here and wrote that I HATE, HATE HATE this dreadful illness. It wrecks lives and causes such unhappiness and sorrow. Why oh Why?................
Sorry folks, but I feel a little better now for having got that off my chest.
God Bless everyone and thank you for "listening".
SuzieQ xxxxxx
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SuzieQ
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My heart goes out to you both, I know just what it is like when you have to manage and do everything. Above all I hate the smell of stale urine so I fully understand how distressing the incident must have been. Our natural response is to become angry especially when you have had such a trying day.
I hope your surgery goes well and your daughter helps and supports you. We are all struggling to get through every day caring for loved ones with PSP. My husband was diagnosed in December 2010 but has PSP for at least 2-3 years before then. He has deteriorated greatly in the past year. He is losing the strength in his legs and struggles to walk even short distances. He used to be so fit he could cycle and walk long distances with no effort.
he attends Headway day centre two days per week, have you heard of headway it cares for people with head injury of brain diseases. They are a really great organisation.
i am so slow at typing, i have to go and collect him now. Hope today is a better day for you my love to you
Keep shouting at us Suzie, that's what we're here for
We know what it's like to be tired and axious and frustrated and angry and upset and and and ...!
It's hard for you knowing that you'll be unwell yourself for a while, but do let your daughter look after you as well. Sounds like you'll need it, and a wee bit of TLC will do you no harm at all!
I understand exactly. I moved in with my parents to help my Mom take care of my Dad. I saw her frustration explode several times over the last few years!!! So, at the beginning of 2011, I sold my house and am here full time. I have seriously been trained to THINK WITH MY HEAD , and have been helping Mom do the same. Her temper and need to snap back at Dad are virtually non existent now!!! When psp patients have their temper snap, or they are in ugly moods, its tough and snapping only makes it worse. They seriously cannot control it.
When Dad drops things, food on the floor, his glass of water (5 times a week at least), etc, we just go wth it now....lts no biggie.....
But, you shouldnt feel bad. Its a natural thing to lose it once in a while. Just let it go!! Everday is a learning experience when dealing with this incidious disease!!
I hope your surgery goes well. Best wishes to you both. I am glad your daughter will be there to help! DAUGHTERS are AWESOME!!
I agree with all the comments above.Never feel guilty about loosing your rag, the relentless nature of this illness drives you mad and the frustration that you live with day in,day out,gets to us all.....I think we carers have all been there,on a bad day and sadly, our partners are unaware of it all,for the most.
Good luck for next week,take care of yourself and dont worry............Time for YOU next week....
As the others have said, don't beat yourself up over losing your temper. I'm sure your husband has forgiven you... and if he's anything like Mum he's probably forgotten it even happened!!
Allow someone else to "take the strain" for a while. Don't be in any great rush to get back "in harness" after your surgery - you need time to recover fully. It's great that your daughter is able to help out for a while but if you still need help after she has to go back home you maybe able to get a temporary care package to tide you over.
Carers are such important people!! Make sure you look after yourself.
So sorry to hear you've had such a bad day, but this blog is just incredible in helping to get the frustration, guilt, anger.......... Off the chest. Has today been better?
Today is our Wedding anniversary, this morning my husband gave me a hug and said "who would have thought 33 years ago Psp would happen?" My heart goes out to him but I too have ranted and raved at him due to some of the impulsive things he does.
I hope all goes well for you next week and you must give yourself time to recover Suzie before taking over the reins again.
Thanks to everyone for the kind words. I cannot begin to say grateful I am to "talk" to people who truly understand and I am glad to say we have had a much better day today. My granddaughter invited us round to see my 6 month old great-granddaughter, Paige and it was like a wonderful ray of sunshine which has certainly helped to brighten my mood. We haven't visited with them for a couple of weeks and I had forgotten what effect one little girl can have on "Gramps" The baby seems fascinated with my hubby and he is so gentle with her when she is placed on his knee. It's as if the baby knows her "Gramps" is fragile and the effect she has on him is really calming. The visit has certainly had the desired effect and we are both feeling much calmer now.
Thank you again.......take care. God Bless you all.
Hi Suzie.....rant all you like. I did it last week on here & felt a little better afterwards. I know exactly how you felt about the incident with the carpet. My husband uses a urinal bottle but I no longer allow him to hold it. He stands with his hands on my shoulders, I stand in front of him & hold the bottle so I have control...no more accidents!!!!!! Whenever we go out, I make sure he's " been " before we leave the house & I also keep a bottle in a bag attached to the back of his wheelchair just in case it's needed. We've never had any inhibitions so although it took a while to get used to this method, we've not had a problem with it. Mind you, he'll only allow me to hold the bottle & no one else.
One funny incident......a friend of our daughter's did a skydive last month to raise money for PSP. We travelled 2hrs to the airfield & were there for about 6hrs. When Frank needed a wee, we couldn't get him to the toilet block due to the muddy ground so used the hangar ( with permission ). Our daughter had to help me but even then he kept his modesty. She kept hold of him from behind so she didn't see anything but he took ages because we couldn't stop laughing I don't know what everybody outside thought we were doing!!!!!! I then had a full bottle to dispose of so just went round the back & emptied it. Job done!!!!!
God bless you sweet heart, I'm there with you. I am new to this site but have been helping my mom of 72 deal with my dad with psp. She has been his primary caregiver since his diagnosis a few years back. My wife and I had been helping mom and dad in our spare time and on weekends...we have three kids and a grandson. I normally work 50 to 60 hours a week and my wife works at least 40. All that changed on September 9, 2011 when mom was diagnosed with a terminal brain tumor. She had surgery on 9/15 and has been receiving radiation and chemo since. It looks like she may survive for about a year although the doctors opinions are based upon statistics. At the end of the day I'm certain God will dole out the time as he sees fit. It appears that mom and dad may go at about the same time. I think that may be a blessing as they are like bookends... never see one without the other. After mom's brain surgery, we had prepared our two spare bedrooms with the same colors and layout as their house and moved them in with us. Substantial change in life style for us! We are still in the adjustment period but I will say that with every negative, there is a poistive if you look hard to find it. Mom and dad now live with me, my wife (what a gal) and my 13 year old son. My son is an honor-roll student and active in the church...more than me...and we are all coming to the conclusion that this situation not only serves my mom and dad but is teaching me and my wife several lessons every day but most importantly my son is seeing how family should take care of one another...a lost art is the USA. I seems as though everyone (family and friends) was surprised that we went this route instead of sending them both off to a nursing home. I couldn't do that...I suppose that is a tribute to the way my parents raised me. I hope we know what we are doing...I will certainly need some guidance and it looks like this is the place to find it along with the Bible.
My heart goes out to you. I, like everyone on this site know exactly how you feel. I had sooooo many rants over the time Ray was ill. Thank goodness for this site - keep letting off steam and we will be here to listen and support.
Will be thinking of you this coming week with your surgery.
Its good to have a rant and to know you can do it somewhere where everyone goes 'I know exactly what you mean'. It sounds like you had a good day afterward with your grandchild and that's what keeps you going. I hope all goes well with the operation but don't try to be superwoman too soon after it, let others support you too,
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