psp and coping

[Morag1952]

Hello my husband has psp diagnosed initially with Parkinson’s but now psp has care in place but me myself find it increasingly difficult to cope he has hardly any speech now and falls a lot I find it all very hard anyone else feel the same

[Bergenser]

Dear Morag1952, my heart goes out to you 💜. Yes it's hard to cope. I can find somehow the energy to keep going and keep chaos at bay for another day - then the smallest thing makes me snap and want to scream.There are no easy answers. I think it's OK to decide that you can't and won't cope, and let someone else take over the responsibility for keeping him safe. But that decision seems so huge that I think many of us will push past the breaking point rather than admit that it's all too much.

I'm still working and probably have a lot more outside help than you - still it's not enough and I'd love to return to being a wife not a full-time carer and administrator. I find myself grieving for what's already lost - and for losses still to come. Love is strong and endures everything - but that doesn't get a grown man off the floor...

Know that you're not alone. Hopefully you have family and friends that could help with some things e.g. pushing on NHS/Social care / council to make sure you can access every bit of help your husband needs. That should include respite for yourself - time to do things you enjoy and to get rest - without any guilt.

Vent on this forum any time you want to - we all understand. Hope and hugs🌻🤗

[Morag1952 in reply to Bergenser]

Thank you for your support but I find it all overwhelming I do have carers but I find Jim not being able to speak to me any more so I don’t seem to have anyone to speak to . he doesn’t want to go to any social stuff he can’t walk on his own anymore and I sometimes wish it would all go away sorry but that’s how I feel

[Bergenser in reply to Morag1952]

I recognise that feeling, and not being able to have a conversation with your husband is heartbreaking. That feeling of resentment is totally natural and nothing to apologise for - direct it at the disease. "You can swear the house down if it helps 🎶". You do need someone to speak to, and someone who can help you feel like yourself (unburdened) and I know that's difficult - but try. For me, it's the local walking group and getting out into nature for an hour or two. Walking and talking gives me back that sense of me. 💜

[Starwarsthe in reply to Morag1952]

Hi I’m a73 years male ad I’m on my own I have my sister helps me but I agree with u it’s very difficult to speak have u looked on getting a speak box if your husband can type a few letters it will speak I’m currently working on getting one just a thought

Good luck and remember to look after to u

[AnneandChris in reply to Morag1952]

Dear MoragComing to terms with the loss of speech together with empathy are two of the hardest things I found I had to deal with.

We were fortunate to have had the support of a wonderful team of carers, but they too got upset when they couldn't understand what Chris was trying to impart.

We had had a discussion and as Chris wished to stay in his own home I said I'd try to keep him here unless it became physically impossible. We had downsized to a bungalow on retirement and were able to make adaptations, so with the lovely carers, wonderful district nurses and a very supportive GP we were able to keep him at home.

I appreciate this isn't possible for everyone and I do regret that I didn't have time to just be his wife again. But he had the end he wanted.

All this happened at the end of 2019, then we had Covid and Lockdown and it is only now that I am becoming 'me' again.

So, keep on keeping on, you are doing wonderfully.

Sending hugs

Anne x

[PineEater in reply to Morag1952]

Morag 1952

Sorry to learn about Jim's problems.

'I do have carers but I find Jim not being able to speak to me any more'...

Please let me know did you get him any treatment for speech? If not, go for that immediately. If yes, why has that not been effective.

We need to fight the disease with full strength and determination. We need to focus on solutions and not problems. Best wishes

[Dianafinnegan28 in reply to Morag1952]

hi I thought it was only me that fines it hard to cope I feel the same bad daydays I miss my husband I just now a care Pearson not a wife I feel lonely at times I don't feel like I am seen for being a wife mum or human I am a care Pearson with out a life I love my husband very much but I get dragged down with it all it is 24/7 every day 7 days a week I have everything in place but the thi g I struggle with is getting to to bed far another over so he dose not fall out ask the doctor for help wating for an OT to get in touch but I got no were last time hugs to all Diana.

[Pinkcamelia in reply to Bergenser]

I feel exactly the same. I can cope most days without being stressed. Then another day I’m so stressed I snap quite easily. I hate myself for it. That’s mainly down to the impulsivity of the PSP. Which usually results in him falling.

I gave my job up last year to look after my husband. As he had a nasty fall and cut his head open. Within a few days he had covid. Which took him off his feet for a few weeks. . I just felt, I couldn’t do my job properly, constantly on edge every time my phone went off. As I knew it would be yet another call from the falls alarm team. They call me, as he has virtually no sound with his voice. I have great difficulty sometimes at trying to understand what he is trying to say myself.

[SharonandRichard]

Dear Morag

Reading your post bought back so many feelings for me, I too went through exactly what you are now. My husband Richard lost his speech and fell frequently, and I struggled to get him up from the floor and used to get angry with him. He would try and communicate but couldn't. We did try with him writing things down, but even that became more difficult.

I know none of this helps, except to know that you're not alone, my heart goes out to you.

Richard lost the battle just over a year ago and even now I feel guilty thinking about the times I got angry; but that was with PSP not him. I've kept the notes he wrote to me which brings it all back. Sorry to rant on but as I'm sure you're feeling now it sometimes helps. So many of us understand what you're going through so keep writing on this group whenever you feel you need to get something off your chest, it seems like a small thing, but it helps.

Big hugs and be kind to yourself

[Leosta in reply to SharonandRichard]

Dear Sharon, yes to everything you've written ! Everyone quotes Anne Heady: "Ditch the guilt" but it's not as easy as that, is it ? PSP turned me into a person I didn't recognise at times and I took it out on my poor husband who was the one suffering from this vile disease. Seven months on from losing him I'm still ashamed. I understand what you are going through.Hugs to you 🤗

[JAK63]

Dear Morag1952

I think most of us as carers have felt the frustration and anger at this illness as it takes our beloved away from us, whether that be a husband, wife, mother or father. My husband was diagnosed in June 21 but the illness had been taking its toll for some years before but of course we didn't know what was happening or why his personality was changing.

I would get angry too when I had sorted things out, made arrangements, worked, cooked, cleaned and made him comfortable etc. only to find he'd had an accident and I had to change his clean clothes, or mope him down when he had spilt something, or taken a fall and had to find the strength to get him off the fall. I regret all these times I did lose my temper but sadly its human nature and we can't all have the patience of a saint. I still loved him dearly and would sit and cry and say to him that I didn't know how to cope anymore. But you do find the strength to get yourselves through another day.

Well, sadly my husband is in a care home now. A very good one and I am living withing 5 minutes walk. We were managing, just about, until Easter when he fell and broke his hip. He no longer has mobility and this accident seems to have triggered a downturn in his health generally. His speech is poor now, he coughs and chokes when eating and drinking and has to have someone sit with him and feed him, which is often me. The difference is that he has nurses and carers who take the responsibility of it away from me. They have taken the time to investigate this rare and challenging illness and know what to do help him. This does not take away the awful feeling of guilt every time I walk away and leave him sitting there looking sad and forlorn. He constantly asks for me and when I'm there, how long I am staying and how long before I visit again.

I am still heavily involved in his care and the administration behind everything, but I can at least sleep at night knowing he is safe and cared for.

I wish you well - I wish everyone well who are dealing with this terrible. cruel illness. Remember though, we can only do our best and we must continue to ask for help to get us all through this.

[PineEater in reply to JAK63]

JAK63

....His speech is poor now, he coughs and when eating and drinking....

1. I would like to know the details of his deteriorating speech. Did you get him the speech therapy? If not, go for the without any further delay. If yes, then why has his speech deteriorated?

2. Similarity, did you get him Swallowing problems treatment? If yes, why is not proving successful?

Please don't worry about the problem and fight against it with full determination. Best wishes

[Pinkcamelia]

I feel the same some days. My husband falls continuously most days. I have tried to stop him, or at least break his fall. In which sometimes results in myself getting injured.

.. I lose patience with him at times. As I can sit with him for hours on end. He doesn’t move, but when I go to make a cuppa, or go the toilet myself. He just gets up, which endlessly results in yet another fall. More frequent visits to the hospital.

So I have lots of sympathy and understanding of how you feel.. You are not alone in this battle.

[Tulipstaffie]

Morag

I know exactly how you feel. My husband also has psp & hardly speaks. At time it’s like I am not there he also suffers with apathy. I have good bad & ugly days where I go through a wave of emotions. His falls are not that often but now uses a walker indoors supplied by physical therapist team. I hope you gave a good support network and try to have time for yourself to retain your sanity.

My thoughts are with you.

[Rose1sunflower]

hello Morag

We have had to deal with a variety of challenges since my husband’s diagnosis, a lot of adjustments to make.

I have to admit though, the not being able to understand his speech, not being able to have a conversation with him is really taxing emotionally and also mentally taxing trying to work out what he is saying.

Early on we did voice banking but the poor movement in his arms and hands limits his ability to use this.

We have Carers in the morning, a cleaner and a very supportive family.

Having a person sitting in the room but not able to interact with you is lonely and frustrating.

You are not alone Morag, it is a horrible for all involved. Do you use the PSPA monthly video groups? I find these useful.

Take carexx

[HowDoglover]

Hi Morag, I have been in exactly the same place, ask your Gp to refer him to the falls team & speech therapy, they may be able to help,we had a life line which would come out in about 45 minutes , so much quicker than the ambulance.

We had carers morning & evening, but it was a bit hit & miss.Eventually the family persuaded me to let my husband go into care, which we are paying for, but he is safe, & my health is getting better, a very hard decision for everyone.Good luck

[Leosta]

Dear Morag, you are not alone in how you are feeling as you can see from the replies. We all know and understand what you are going through and how difficult it is. My husband's inability to speak except in incomprehensible whispers was the most difficult aspect of this awful disease.

Try not to be too hard on yourself and look after yourself.

🤗

[Prius1]

Hi, I am so sorry to hear your story, I can sympathise as my wife was diagnosed with PSP three years ago, I initially became her carer but found it difficult so she went into a nursing home but after a year of trying to get chic funding failed twice so could no longer afford to keep her in the home so she is now home with me and I have carers coming in three times a day but I am at my wits ends trying to cope with this awfull disease, like most people I occassionally get angry not with my wife but with the situation, although I get carers coming in I feel like a prisoner in my own home so Kent council are going to try and get her into a funded home, I can only hope that you continue to survive there must be some light at the end of the tunnel for all of us who are carers for our dear loved ones, god bless you x

[Starwarsthe]

hi yes I know exactly how you feel I was initially diagnosed with Parkinson’s but just last year it was diagnosed with psp and I have issues with my falling and my speech it is hardly there I live buy my self and I’m in a retirement home with psw workers who help me out my spouse kicked me out of our home back in 2018 so u just have to be loving caring spouse

Take care and this group of people are very helpful

Glen

[Ronniefergie1234]

hi Morag My husband has Parkinson’s and his mobility is deteriorating. He falls too. I have community alarm to help pick him up from the floor. I too find it stressful and sad

[Catherine1986]

I’m not a full time carer for my mum but oh my gosh do yours and others comments resonate. I was coping, and then things took a turn for the worse - my mum deteriorated, I needed to check through paperwork and things I wasn’t ready to see… I feel like I’m balancing on a knife’s edge and the slightest thing takes away my ability to function normally. I feel a constant level of guilt and anxiety… I am fighting tooth and nail for every bit of support we can possibly access but it never feels like enough, I never feel like I’ve done enough. No one around me seems to understand, i feel alone.

I guess the point I’m making is it doesn’t seem to matter where our loved ones are; at home, in a care home, what struck me reading all of these posts is that we all feel the same emotions. Guilt. Frustration. Isolation. And an inability to cope.

[Morag1952]

It is hard to cope Jim was originally told he had Parkinson’s but has now been diagnosed with PSP he has virtually no speech now and I have a carer three times a day currently being assessed for two carers four times a day. He virtually can’t walk now . Yea it’s very wearing .

[Ronniefergie1234]

Morag Likewise my husband was diagnosed with Parkinson’s and recently was re diagnosed too. His speech is getting worse as to his mobility. I feel sad because I feel I am slowly losing him 🥲