How do other carers deal with the "difficult" days?

How do you deal with the bad days? Please can somebody tell me? The past few days things have been very trying for both my husband and myself. I try so very hard to deal with it all but there aren't enough hours in the day sometimes. Tony had yet another fall yesterday - once again onto the tiled kitchen floor. Why does he always seem to fall on hard surfaces I wonder? He is covered in bruises and this morning is very stiff. No real damage, thank God except for the ususal bruising and scrapes - I feel more damaged than he is in many ways. I get terrible headaches when we have had another upset like this. I feel sure these are caused by anxiety. I am so afraid when he falls. I can't bear to see him hurt. I don't want to stop him being in the kitchen with me. It's nice that he wants us to be together.

He is unable to follow simple instructions most of the time, and can be very convincing when I ask him if he has understood. How do I make him understand he is at risk of falling every time he tries to get up from a chair unless I am there to help? He seems to be coughing more and more and his tremor makes it very difficult for him to do lots of things most of us take for granted.

I know all of you on here struggle like I am, and I tell myself that my low mood will pass, but as we all know PSP is really difficult to deal with most days but this is one of "those" days.

I hate this illness more each and every day. So cruel for both sufferers and carers alike. I just wish that I could get inside Tony's head to know how he feels. He tries to tell me but he can't. Our conversations are restricted to simple responses to questions. He no longer starts a conversation and in spite of the fact we can be sitting alongside one another, I feel as if I am no longer part of him. He seems to live in his own world most of the time and seldom shows any emotion whether it be happiness or sadness (or anywhere in between the two!). I think he must be very scared of the way this cruel illness has affected both our lives. I try very hard to stay upbeat in his presence but he doesn't see how many times each day I cannot control my tears. My heart is slowly breaking.....................

SuzieQ

12 Replies

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  • Suzie, it really is hard for you, you have to cope in so many ways, the physical and the mental. One of the hardest things I think, is that a corner can be turned and you think well it isn't so bad - and then wham another fall, the last fall for my husband was one too many and we ended up, reluctantly in hopital. I hope you have some type of help, carers at least they do take a little of the strain away. Husband has had to go to a care home, where he is treated well and they have an understanding of PSP, there is no way i could take care of him as they do, Do i feel any better? Yes because he is being looked after, No, because of the guilt, especially when i leave him to come home. PSP is a no win situation.

  • hi Suzie

    i am a psp person and do not like the frustrations i feel when i cannot do simple things any more and when i fall over it is worse for people who see me fall than it is for me myself

    my temper is very short and i tend to rile against whoever is with me

    however i now find it difficult to get up when i do fall down and wear a pendant whilst in the house to call the services if i did break another bone ( forbid)

    and whilst the weather is good i can still get out with my 4 wheel frame 4 balance outside...

    Tony is obviously in a later stage than i am and i hope i shall b ok to accept whatever help is needed (practical or financial) when the time comes

    i have a carer for an hour a day at present and she is great- i have not fallen when she is around as she is relaxing and it is worse when i am stressed

    Jill xx

  • Hi Suzie...I know just how you feel. I have no answers to your question because I often ask the same question. It's difficult not to cry in front of my husband as this obviously upsets him. I say that but I'm not really sure anymore...the noise he makes could be crying or just a noise I don't really know. When I ask him a question he takes so long to answer that I've forgotten the question as well. If he says something I have to ask him to repeat it & he usually then says " forget it". So what do I do?? I hate it that he seems to be in his own world but how do I get in ? We.ve always been happy in each others company but it now seems to be very tiring & dare I say it " boring" at times when I talk to myself.

    Sorry this isn't helping but once I get started I don't seem to be able to stop.

    Take care & try to keep smiling Love Hazel B xx

  • Thanks to all of you for your support. Hopefully tomorrow will be a better day for us all.

    Take care...........SuzieQ xx

  • Hi Suzie

    It is terribly hard and the only way I could cope with the bad days was to try to hold onto the good days. Not really a helpful answer for you I know but it was the only way I could cope. Particularly those days when he just didn't seem to listen or follow the instructions even when I had asked my dad to repeat what I had just said e.g. don't get out of the chair, call someone if I need help and then what would he do a few minutes later, he'd try to get up out of the chair without calling someone and end up falling. Very frustrating

    Take Care of yourself

    Lesley

  • Hi Suzie

    My husband saw three Neurologists before he was diagnosed with PSP.. The third Neurologist, the one who diagnosed him was a very kindly, humane person. He said at the time, "This is not one person's illness, it's two people's illness". I didn't know what he meant at the time but before very long I understood. I felt that by far and large the emotional/psychological strain was harder to cope with than physically helping him. After he died when I dreamt about him, the dreams were always about him looking so ill and so very sad. Now when I dream about him I dream about him as a younger healthier person, the person I once knew.

    It is as you say, such a heartbreaking experience for the Carer.

    Kind wishes

    Lina

  • I felt for you both reading your comments. I commented the other day that since joining this forum I have stopped shouting and found renewed patience. But Eddie had a fall on Thursday and two personal accidents on Friday. I have to admit my patience was worn very, very thin, both with the situation and with my husband. And like you I find his inability to follow insructions very difficult at times. If I ask why he's done something or how it happened he always answers 'I don't know.' And if I ask if he understands he always says'Yes.'

    Like you I find myself living with someone who rarely, if ever, instigates a conversation or engages fully in one. Throught our marrriage we have, from time to time, had long, comfortable silences but now they feel like long, empty silences.

    How do I cope on bad days? Sometimes I think I don't but we get to the end of every day and exchange the same loving endearments every night which I find very comforting. And that gives me a bit more strength to face tomorrow. On bad days I eat too much, sit in a different room, talk to my 88 year old mum who nursed my dad through dementia, talk to you and our other friends in this forum, feel guilty and remember I married him for better or worse. If he's safe and settled I take the dog for a short walk. And on bad days I look at my husband's sad and sometimes confused face and to stop my own heart breaking I stroke his face or give him a kiss or tell him I love him. And I always promise myself that I won't make the next bad day worse. And on a bad day I try to make it better for him by sitting and holding hands, distracting him with a trip down memory lane.

    I hope tomorrow is a good day for you and your husband.

    Take care

    SheilaN

  • When I said I sit in a different room I didn't mean all day. Just for a little while to compose my thoughts, come to terms with whatever has gone wrong and until I feel ready to carry on.

    On a slightly different note.....usually when Eddie is having a doze or watching TV I find a job to do. But I think I'm going to start sometimes doing the same, just taking some time out to relax with him. Then if something doesn't go according toplan I won't be so tired as I usually am. The ironing can wait!!!!

  • Oh Suzie, I was so like this a couple of weeks ago. This site has saved my sanity as I wrote a blog saying how desperate I was. Wonderful people whom I now consider friends replied and told me to get to the GP which I did. I am on anti-deprresants at the moment but hopefully not for too long. My Mum has PSP and I felt I couldnt cope either anymore. Basically I 'Lost the plot' for 3 or 4 days while the tablets took hold.I was physically and mentally exhausted trying to look after Mum, hold a job down and look after my family and a puppy! I have cried so much this last fortnight that I am now empty and yet I feel better. My husband and carers had to look after Mum and I felt so guilty. When I eventually got back to seeing her I had 4 bin liners of washing to do! lol Now I hope I won't let myself get too down again as I know you are all here for me! On your bad days then..blog us! Lots of love Jan xx

  • Thanks to everyone for the kind words of support. I visited my GP today and he changed my anti-depressants and suggested I might benefit from seeing a psychcologist who visits our surgery. I have a telephone appointment on Friday which is the first step and then we shall see. I feel better for having told someone how I am feeling but I am still finding it hard to hold it together in front of my poor husband.

    I was able to go walking yesterday with a Rambling Club I belong to and it felt so good to be able to "switch off" for a few hours. In spite of the fact I had walked 6.5 miles in the heat, after a nice shower I felt much better. If only I could do it every day..... However, it still feels strange not having Tony with me, as obviously he is no longer able to join us on our country rambles. He so loved to be out walking and now he is restricted to sitting in the garden! I take him out in the car into the countryside, but it's not the same when you have always been able to walk across the fields, etc. I pass on all the good wishes from members and friends in our club but it is sad to think he will never be able to join us again. I think that Motor Racing and our Rambling Club are the only two things that he shows any sort of interest in nowadays.

    Here's hoping that my new medication kicks in quickly and thanks again to everyone for your support.

    Take care everyone....................SuzieQ xx

  • Dear SuzieQ

    It's great that you were able to get out and clear your head a bit. Hopefully the support from the GP will help as well. PSP is a long hard road for everyone, and you need to be able to look after yourself if you're to look after Tony. Keep shouting on here when you need to!

    I hope tomorrow is a good day too :)

    Fiona x

  • I was diagnosd with psp about three yars sgo abd now find mysek[lf falling more often ( about 3 times per day )

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