First time

This is my first time here. I look after my husband 8 years diagnosed with PSP. He is in hospital at present. Very difficult day as he knows about a care package and thinks I am going to put him in a home! I cried so much at visiting today. He is coming home just as soon as the carempackage is sorted and we know what equipment he needs. He said today I want to get rid of him. Couldn't be any further from the truth. I feel so awful.

36 Replies

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  • Hugs to you Tillyhugs

  • Thank you I need one right now 🤗

  • As I was about to say! Welcome to this site.

    Caring at home or in a home away from home is one of the hardest decisions to make! Neither of you want to make that decision but there is likely to be a time when it is necessary for both your wellbeing!

    Seems like now is not yet that time if you have a care package in place.

    Introduce your husband to this site! There are others here who are sufferers of PSP, as well as a wealth of carers. He will find comfort in talking to others experiencing all he is going thru, and it will help him to feel less isolated.

    You are not alone in your fight with PSP here! There are many who completely understand every emotion you feel, as they have experienced it themselves.

    My hubby had CBD and died while we both were still coming to terms with it. We never had that 'heart to heart' conversation of what it meant to our lives.

    May be that men don't want to think it through. Mine did not, but that was my way of coping.

    I suggest when your husband is home, you persuade him to talk about how he feels so you can tackle his problems together. Talk about respite care too. That is something you will increasingly need to use to be a good carer - not a wiped out, exhausted, frazzled carer who cannot love and care for her husband with empathy. Just read the rants! We all understand the need! It's all here!

    You have just made a world of friends who understand both sides of this aweful disease! Use them to help you both understand the way ahead!

    Hugs to you both!

    Jen xxxx

  • Thank you so much Jen. Up to now I have managed to look after him on my own but now I do need some help. It isn't like him to be like this. He is usually a very easy going lovely man. Such a shock for me to hear what he said

    Thank you so much for understanding

    Hugs 🤗

  • Changes in nature are part of the disease. You are not alone, and there will be many carers who have experienced the same. A search on this site will bring up the posts.

    Hugs

    Jen xxx

  • He is frightened . Will be easier when he is back home with you .. Not everyone needs to go into a home once he gets all he needs in place . .mine hasn't and as long as I can he will stay at home with me .

    I do gave carers in but in general I do most things . In fact a lot more than they do .. I use the ceiling hoist and slings his chairs and Sherrie commode . I am 80 ...

  • Where abouts are you? I live in New Zealand. Cos of time difference, I often reply to posts during my day as I guess it could be a middle of the night 'panic' call in the night for someone!

    Jen

  • I am in United Kingdom 🇬🇧. On the Wirral Peninsula just across the River Mersey from the famous Liverpool. So lovely to have a newfriend in New Zealand.

    I am 62 and hubby is 68

    Hugs 🤗

  • My sister in law lives in Huddersfield, and my mum came from Collingham, Notts. So you should really be going to bed !!!!

    Hugs

    Jen

  • I am in bed just can't sleep 😴

  • Been there too!! Hard to do, but try and relax!! You have found solutions to your problems here on this site.

    Think of sunny beach and the waves splashing! Or follow a train through a dark tunnel till you see a pinprick of light!

    Nighty night!

    Jen

  • Night night xxx

  • Oh dear this PSP is the most horrible illness there is, so sorry to hear about your husband, we have a care package, maybe he thinks because he is in hospital, you might put him in a care home? We are in Hertfordshire, up near stanstead airport, it is late but I can't sleep. Love Yvonne xxxx

  • Thanks for your support. I do feel exhausted right now. Let's home we all have a better day today. As you can guess I am awake already it is about 5.40am. Take care

  • Dear TH.

    Welcome to our little part of the world. It sounds like you are tenured in the art of the carer.

    It still does not come easy , especially when hurtful words are added to the already bitter mix. You probably already have , but be forthright about the care package and that it will be used at home and that you want to make him comfortable....

    I had a hard day too....No matter how much you plan, you never are ready for the shock of it all. I hope your day goes better...today....It's 10:45 here in the US so that makes it like 4:45 your way.

    Take care and welcome

    AVB

  • Dear AVB

    Thank you so much for your message. I have cared for DC on my own for the last 8 years but do need help now. We have been marrieslmist 43 years so comes as a big shock when he thinks I want to get rid of him. As you can probably guess by the time I've not had much sleep 😴. It is 5.40am British time. Good to know there are friends out there and I'm not on my own. Hope you have a good day tomorrow

  • Are you gonna make it today , without any sleep>

  • Think I got about 4 hours sleep probably end up falling asleep during hospital visiting!😴😴

  • yah me too...spent all day to try to remedy my husbands sleep by pulling out furniture and putting in his hospital bed.....I was still up all night with him...im tired

  • Oh bless you it is exhausting. Take care

  • Hi there Tillyhugs; my computer does not like your name - it just put a red line underneath it - mind you, it will just have to get used to me typing it, I suspect!!!!!!!!

    So, I am a PSP sufferer (or victim, or just plain person)!!!!!! And I Am more than happy for you to look up my previous writings on this website ,,,.... and as everyone else has disclosed to you, this is a fantastic website for carers and PSP people themselves to write on!! It is also an incredible time waster!!!!! So because I live in Australia I am like honjen43 and I Am still up!!!!!! in Brisbane where I now live, the time is 4:35pm. I was actually born in Kiwiland so honjen43 and I do have a wee bit in common!!!! (and I have just noticed that I can type honjen43 without causing a red line to appear). YAY!!!!!!

    Anyway, I shall now go on and look up some more information - keep in touch Tillyhugs.

    Love Bindi

  • Hi Bindi

    Lovely to hear from you. I am hoping for a better day when I visit DC (my husband). I just hope he realises that I am doing my utmost to get him home as soon as possible. Hope you have a good day tomorrow. Take care

    Love Tillyhugs

  • Welcome to this site. I look after my mother along with my siblings. My mother was one of the nicest caring people who would do anything for anyone but this awful disease has changed her. It's very difficult some day's and sometimes I want to walk away and not come back to any of this. But when you look at this website carers and sufferers of psp are going through exactly the same.

    So feel free to ask questions, be upset, shout, scream were all here for you.

    I know that you said you have been caring for your husband by yourself, but do you have any family members who are able to help?

    My mother has carers in 7 times a day and lot's of equipment provided to help. One thing going for us in the UK is that we have the nhs who help us tremendously.

    Please keep writing we are here for you and your husband. Big hugs 😘

  • Thank you so much York. I have a son but I do most of the caring. We are waiting for a care package to be set up. Do you know if we have to pay for the careers coming in or does it come under continuing care? Hoping for a better day today but boy I am so tired. Since he has been in hospital I keep waking thinking he has got up out of bed!

    Hope you have a reasonable day, so nice to know there are people out there who know how I feel and care.

    Look forward to chatting again soon

    Tillyhugs x

  • We firstly got fast track carers in for 6 weeks to check what mams needs were which we didn't have to pay for. But we have to pay towards the carers but is subsidized by the local council. It depends on your financial situation as to how much you have to pay

    The OT and social worker need to get together to get this sorted for you. Have you seen them yet?

    Another thought have you got power of attorney in place (financial and health)?

  • Here in a Wales no one Kays more than sixty pounds .and if you get CHC it's free . Depends on the individual it is more expensive in England

  • Hi Tillyhugs, I live in Dorset down South, small seaside town of Swanage. I'm 63 & hubby is 78, he was diagnosed with dementia 5 years ago & that was quite a battle to live with. My lovely quite Laz changed into a different person. Then last year I noticed the deterioration in him & he had several falls, he was diagnosed with PSP last December, could life get any more difficult, oh yes.

    My social worker has finally stepped up his game & has been so helpful. We now have a lovely team of ladies who come in each morning to shower/wash & dress Laz & he goes to a day centre 2 days a week, I also use a sitting service that is available to carers. Do make sure you get you all the help you can, it does help, I also have a few really good friends, all are very helpful & considerate.

    Today we are going to our first local PSP association meeting way we can meet other carers & sufferers. I'll let you know how we get on. Chin up Tilly it is tough going but us ladies are strong, although we do weaken at times though. A huge hug for you. Chrissie x

  • Thank you Chrissie. I go to a local meeting in Liverpool the people are lovely 😊. Hope your meeting goes well. DC ( my husband) cannot walk at the moment whether that will change is another matter. So I am planning for a downstairs bedroom. When I'm not visiting I'm trying to organic se and decorate a room for him! Have a good day.

    Keep in contact Tilly x

  • My mum has said awful things to my dad about him not caring. It is the psp talking but it is still so difficult to take . Dad is constantly in bits. It is all too sad and you are going to need a lot of help. Please take it xxx

  • Hi and welcome.

    I think the changes in behaviour are really hard to handle.

    I care for my husband of 55 years. We always talked a lot and now he just stares at me. The important thing to remember is that they are still there, trapped, and it must be dreadful for them. Occasionally Chris can respond and said he feels terrible when he is blanking me. Inside he is talking.

    Hope you are catching up on your sleep.

    love, Jean xx

  • Hi, Tillyhugs! Welcome to the site. There are so many helpful people on here, and advice and comforting words are freely given. We are in the US on the east coast, and have heard from people in many countries. My husband has not reached the stage of many PSP sufferers on this site, but it is so uplifting to know there are others who are willing to listen. Many have expressed seeing personality changes in their loved one with PSP, so I hope you will search the site and read how others are dealing with that issue. All the best to you and your dear husband!

    Ann

  • Hi Tilllyhugs. My husband was diagnosed with PSP 9 years ago. Up until last year I looked after him, he had three dislocations of his shoulder and after the last hospital admission the social worker arranged for a care plan. It was hard at first because my husband is a very proud and independent person and did not like anyone coming in to shower and dress him. That was last August and I could not do without it now, and dont know how I did it before. He is very charming and helpful with the carers and I just let them get on with it. I live in Ireland and I get one hour in the morning and one hour at night seven days a week at no cost to me. My husband had no choice as I was completely exhausted (he keeps saying he does not need looking after) Best of luck and it might be a bit strange at first but it will become normal very quickly. Best of luck, xxxx

  • Welcome to this site... wish it was under better circumstances. You'll find plenty of support here and a wealth of experience to draw from. As honjen has said, there are many givers here as well some afflicted with PSP, such as myself. Just reach out and ask whenever you have a question or just need to rant... no one judges you. x

  • Hugs to you, Tillyhugs. Prayers of comfort and strength for you and your husband. Welcome to the site. People are helpful and caring here. My sister is 51 and has PSP.

  • Thank you for caring

  • I'm sorry you are dealing with PSP but am glad you found this site. Lots of support and information here. No judgement. We all know how difficult this is.

    Do not take things he says personally. It is the PSP talking and by the next day he will have forgotten he said anything at all. Get your sleep. It helps.

    Prayers and hugs to you from California.

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