Hi, I'm new here - fulltime carer for my Dad who has PSP

Hi, I'm new here - fulltime carer for my Dad who has PSP

My name is Kerryn, and along with my husband, we care for my Dad in our home near Boonah in South East Queensland, Australia. Dad was diagnosed with Parkinsons in 2006, the diagnosis changed to PSP in 2010. I hate what PSP is doing to my Dad; but I love the privelige of being able to spend all of this important time with him. I am learning so much from him and about him.

25 Replies

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  • HI, Kerryyn! Glad to meet you, although sorry for your Dad. It's a hard row, but I feel the same about it being a privilege to take care of my sweetheart. That's a gorgeous picture of you. We are socked in with a blizzard just now, so the sunshine looks awfully pleasant, too! All the best, Easterncedar

  • Hi Eastern Cedar. A blizzard? Whereabouts are you situated? Oh golly, I've never even seen a blizzard. Do you get days when you can't leave home? I guess I'm stuck at home a bit too because I can't go anywhere unless my husband is home or there is s care worker here. So you care for your partner with PSP? Isn't it just an awful disease?

  • We are in central Maine, in the northeast US, near the Canadian border. We do have days when the snow closes roads and businesses. We had a half day off work last week, a full day off Monday, and just a delayed start to the work day today, two hours of glorious free time, mostly spent shoveling snow so the aides can get in and I can get out!

  • Welcome Kerryn to our family. Sorry about your dad's diagnosis but you found the most supportive group here.

    From your picture it seems your a horse lover, all the horse lovers I know are strong willed incredibly loving people, seems like you fit the bill.

    Hugs

    Paola

  • You got it in one there Paolo, thankyou. I'm going to try and care for Dad in my own home until it is no longer the best thing for him. Great to be in contact with other like minded people. I'm also on the PSP groups on Facebook and they have been an enormous source of comfort, inspiration and ideas. Because we all know how frustrating the real world is because most know nothing about this disease and that includes "the experts'

  • My husband and I live in Mackay Queensland Australia. He was diagnosed with Parkinson's in 2010. And then PSP in 2012. He is gradually getting less able to do things. His eyes are so sore so he spends a lot if time in bed. I also hope to be able to care for him at home , but sometimes it gets overwhelming. What a great daughter you are, xxxxxx

  • Thankyou Kathleen, it's a big job isn't it? But I'll do it for as long as I'm able. Are you getting any help Kathleen - has your husband been ACAT assessed? My Dad is on level 2 ACAT and waiting for a reassessment since May last year. His first assessment was in 2013 and there's been quite some progression since then. It's frustrating because his GP has never had s patient with PSP before and I just don't think he understands at all. Kathleen, it must be very hard to have lost your partner as you knew him and for your relationship to have changed so much. Hugs to you xxx

  • Hi Yes it is getting hard for me, but I always think it is harder for John as his life has gradually seeped away. I will look after him as long as it takes. Yes I do have the help and support of my wonderful daughter and our daughter law and son also help out.

    My friends make sure I am not left all alone so that is great. But I do miss the relationship John and I had. When I get down I think back to then and I feel I can go on longer. John is starting to have trouble wit incontinance , so the disease is slowly progressing. This group has been a great source of information and help. It is great to know someone is at least in the same state.

  • Yes it is. I have hired a lift chair so that it is easier to get from his chair to his wheelchair and also is easier to eat so that he is closer to the food. I am trying to see if they will help me buy one. Will let you know how I go

  • We are waiting to have the OT come and give John another assessment. He had one about 18 mths ago.

  • Kathleen, is that to see whether he needs any other aides around the home?

  • Hi Kerryn,

    I'm Rob from Long Island, NY. My mom was misdiagnosed with Parkinson's until almost two years ago.

    Mom 72 now is in a full care facility in stage 4.

    It's amazing to communicate to the other side of the world it's getting smaller everyday. We sold a beach house to a couple a couple years back. He was from London, and she was from Australia. We call their youngsters Aussy-Brits.

    This site is incredible, the guests are extremely loving and helpful.

  • Hi there Rob, sorry to hear about your mum. This awful disease leaves just a shell of the person they were. It doesn't even seem like they are the same person. With my Dad, it seems to be really slow progressing. What I've learnt is that although there are a myriad of symptoms; noone's are the same and no progression is the same. I read so much about it trying to be one step ahead in preparation for the next challenge. I could only imagine what it would be like to be my poor father. Yes, the World is getting or seeming s lot smaller with the availability of social networking. Imagine how isolay d we would be if it didn't exist?

  • Hi Rob,

    I'm new to the site and I am also from Long Island. My mom was diagnosed 4 yrs ago at first with alzheimer's disease but then she was correctly diagnosed 6 months later with PSP . She is 81 yrs old now. I am caring for her with my husband and my 4 children. My brother took off because it was to much for him. Its nice to now that there is someone local that knows what I am going through.

    Deirdre

  • Hi usa4,

    How far is she advanced? Sorry about your brother, was weird at first handling mom as she is mom. Just keep thinking she did it for me in the beginning. My sister seems less hands on and runs to a nurse for help.

    I couldn't imagine what your going thru, 4 kids, husband, and above all all the care mom requires. Are u still able to communicate with mom. We phrase questions to her for a thumbs up response.

  • She is unable to walk so she goes to bed to recliner back to bed. Her speech is intact but she has since started to talk in a low very raspy voice. She constantly is clearing her throat or coughing. She has to use thick it in her liquids to an almost slushy consistency. Her food is pureed. She has lost so much weight. She is down to 73 lbs. She has no short term memory whatsoever. Has no idea what is going on. She is incontinent with her urine as well as with her bowel movements. I definitely agree that its full circle and our roles are reversed. My dad passed away a year ago that was a complete shock. My mom does not remember so it breaks my heart when she asks when he is coming home from work and I have to tell her he is in heaven. She is on hospice right now and i get an aid for 2 hrs a day. I do everything myself so its tough. So I take it one day at a time. Like you said she took excellent care of me so its only right that I do the same for her. We live in Suffolk county.

    Deirdre

  • Oh wow Deirdre, it definitely is full/on for you. What an amazing daughter you are to do this for your mum in her time of need.

  • Thank you so much. I am so happy that I have found this site and able to read and know that they are others out there that are experiencing everything that I am going through and its gives me some sort of comfort that i am not alone. PSP is such a horrible disease and its so scary that are hands are tied because it is so rare and everyone's journey with this disease is different. Not everyone goes through the same symptoms when they reach the different stages. It's scary now because she is complaining that she is seeing blurry now. Her only comfort that she has is watching TV. It's painful to watch what this disease takes from our loved ones. One day at a time

    Deirdre

  • Deirdre, eastern Suffolk, Northfork. My mom doesn't like the recliner, feels safer in the bed. Eyes are red, tearing all the time, can't see the TV, loves Westerns, have a John Wayne picture on her wall, she had us take it down because she didn't want the sun to ruin it, lol.

    Mom was loosing to much weight to fast, not being able to eat. Peg was installed 2-1/2 months ago, She popped back temporary, communicating better, but declining rapidly. The loss of the pleasure feeding last week on orders from the care facility, as little as it was, two teaspoons of pudding, has hit her harder then not seeing the tv.

    Breathing is becoming a problem, pattern is always changing. Clears her throat often.

    My hat is off to all of you who cater to your love ones at home. When my mom was misdiagnosed with Parkinson's, she was given a choice to stay with us for end of life care or a care facility. She chose a staged living care facility. I don't think she would have been accepted if she was properly diagnosed with PSP at the time.

  • Welcome, Kerryn. What a pretty name.

    Yes , I agree how much the patient changes. Sometimes I feel I have lost my dear husband and then he demonstrates he is still there inside. It is a really cruel disease.

    Love from Jean in London xx

  • Hi Jean - it really s lovely to talk to all of you people that understand exactly how I feel. It's also very sad that these diseases even exist. Love and strength to you on your journey with your husband. Yes, it's the glimmers of their former selves that helps keep us going.

  • Hi Kerry

    I'm also living in QLD though west of you regionally. My husband has CBD similar to PSP but not the same. Do you get much support services where you are? We go to the PA in Brisbane annually. As my husband is still mobile we don't need a lot. I'm very lucky with great family support.

    You have a great attitude & that I feel is part of the battle. Good luck with your journey & this is an awesome forum for advice & info.

    Kerry

  • Sorry that should say Hi Kerryn. Unusual name though your the 2nd Kerryn I know of.

    Take care

    from Kerry

  • Hello Kerry, good to hear from you. It's great that your husband is still mobile. I need to lookup CBD to find out a little bit more. We have Ozcare nurses come in three days a week to take the pressure off me. They help with shaving, showering and personal care. Also they clean my Dad's bedroom,bathroom and hallway once a week and wash his clothes and bedding. They also do a bit of socialisation and also exercises if he is feeling well enough. This allows me sometime just to 'veg out' and get sometime to myself. The only time I get to go out with my husband is when we employ someone to come and sit with Dad. So that doesn't happen often at all. I have Dad booked into respite do my husband and I can have a holiday together. Dad does not want to go, and that makes me feel awful for making him. But my husband and I need a break and some time for our own relationship.

    Dad has his first appointment with a new, closer neurologist in March. Dad hates to travel and complains after ten minutes in the car; so we are very restricted where we can go. I do all of my shopping online now; I can't believe they deliver out this far.

  • It's great you have at least some support. And yes you definitely need time for yourself & with your husband. I still work & my sister-in-law is my husband's ddaytime carer. That is until things get more hands on. Fortunately I worked in an aged care home for a bit so I have a little insight & knowledge to help me. Though it is a constant learning curve as you know. What works for one person may not work for another.

    Anyway I wish you well. Take care.

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