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PSP Association
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Coping

Hi, I'm new to the forums.

My mum was diagnosed about 6 years ago, I'd just turned 18. I went off to uni and didn't think about it. I was such a typical idiot of that age. I still am an idiot. Mum and I had a rocky relationship while I was growing up and I was so excited to be out in the world on my own. I saw her very rarely during my three years in Manchester. Our communication was mostly phone calls, or frustrating Facetimes where mum would say "hello, how are you" over and over again as if it was a form of conversation. I know she was just reaching out, I know I'm selfish, she just wanted to know what was going on with me, I don't know why that's so hard for me to grit my teeth and be tolerant, that's what you are supposed to do!! Why did I act like an overgrown baby, why do I feel like I still act like that?

Mum is from Saudi, so she spent large chunks at a time over there when I returned to London from uni and started working. I knew she was deteriorating more and more every time I saw her but never thought much of it. Complete denial I guess - it was easier to ignore. We didn't talk about it, we hardly talked at all, like two strangers living together. I tried to bring it up and it was always "we'll take it day by day", which I found so frustrating, that undiscussed, unknown future. She still says it now, when she can get a sentence out.

The other day I tried to talk about everything AGAIN, and she simply said "I feel nothing". I don't know. I know her mind is sound but she is so vacant. I know it's part of the illness, to appear detached, to feel depressed, to appear apathetic. I'm not surprised, this disease is her worst nightmare. It's everyone's worst nightmare, but hers especially. She has always been staunchly independent, proud and self-reliant. The thought of her daughter, or ANYONE, having to look after her must be agonising. She raised me on her own, completely isolated, and she really struggled. I don't know how she did it. She's dealt with alcoholism and depression in the past. She's addicted to Zopiclone, I know she would have trouble sleeping otherwise because of the pain but her dose was unnecessarily high from the beginning, and I tried to help but she was stubborn as an ox. Bloody hell it's been a long time since I argued with her about her dosage. I've just accepted it now.

She was always very protective of me. I'm an only child. It was always about me, this constant and intense focus. I don't even know who she is. It makes this illness hard because we don't have this connection. She has got an interesting but upsetting past, which she doesn't talk about, I've gleaned bits and pieces from the few members of her family who maintain contact with her. When she married my dad, an English man, she was ostracised from her family for about 20 years, even after they divorced when I was five. She remarried a Saudi guy recently and has been "accepted" back, but I hardly know any of her family and Saudi seems worlds away.

Her care package was abysmal last September. Over 5 years into the disease and she was still on the same care hours as 3 years in. She was getting about 5/6 hours a day, I was helping a lot with going to the toilet, putting her to bed, feeding. She kept going back and forth between London and Saudi and it meant she was never here for long enough to get correctly assessed and form relationships with the physio/SALT/social worker. So last July I said OK, you're staying here now, we're going to sort everything out. And we did. Battled for months with the social worker, the funding panel, so many forms to fill out, so many different carers coming in, having to train each and every one of them, carers stealing from mum, carers being rough, impatient, me losing my temper, me repeatedly vocalising how I was unable to bear it, mum watching on, helpless and silent.

I've had problems with my temper, I just lose it, I can't control it. I've given up alcohol, sugar, and the contraceptive pill to help stabilise my moods and it has helped. I work two jobs and that keeps my mind active. I walk as much as possible. Some days it's fine, some days it's so difficult to wrap my head around, so difficult to keep going.

We have got more hours now. We also have a private carer who used to come in 8 hours a day but on a reduced rate, last night she said she can't do that anymore, she needs a raise, which I completely understand, but we can't afford it. So she's on 4 hours. It's still enough I think together with the council's care package. But things still don't feel manageable somehow. I'm not helping at all anymore with care and am somehow finding it harder to cope. The choking is a problem at the moment. I've had to physically fish food out of her throat, and one of the carers had to give her the Heimlich the other day. She coughs and splutters on water and the wheezing that follows, the sound of it, that breathlessness, I can't stand it.

She wails during the night. I looked it up and it sounds like a muscular thing, the cords relaxing during sleep which causes the sound but that noise I find so harrowing. It wakes me up at around 4am every night and it's unbearable.

I referred myself to the local counsellor and hopefully speaking to someone will help. It's so ironic that both my parents are/were psychiatrists. Hopefully I will somehow be able to put to rest the issues I feel have gone unaddressed with my mum so that I can make things more bearable for both of us. I've tried to talk to her about everything but she is in denial of us ever having a difficult relationship and won't talk things through. Maybe I'm not communicating properly either. Perhaps it's better to just try and move forward rather than somehow "fix" the past through blame game. I know how important it is for me to just bloody grow up and get on with it. I know my mum loves me. I'm sure I love her, that's why I can't leave. Or maybe it's guilt. I don't know. I feel better for writing this all out. I feel like I want to be less selfish. It's so easy to get wrapped up in myself and ignore how it's probably tenfold more horrible for her. Sorry for the massive essay. I'm trying!

9 Replies
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Hi, I’ve just read your post and felt dismayed that you are trying to manage this situation at such a young age. You are a similar age to my daughter and I cannot imagine her coping very well either, if she had had to care for her grandfather, who recently died from PSP just before Christmas. I feel that you are wasting energy worrying about what happened in the past, what has gone has gone, it’s the present and future that matter. Your mum will understand and appreciate you being there, even if she is unable to express her feelings due to her illness. If you have not already done so, try and arrange a carers assessment for yourself - all carers are entitled to one and you may find that there are some things which may be of assistance to you and your mum. If you have not already done so, look into the legal side of things in case your mum deteriorates and communication becomes difficult. Please remember that PSP is very unpredictable. You may find the following two links useful.

ageuk.org.uk/information-ad...

pspassociation.org.uk/for-p...

Finally don’t forget that this site has members all around the world and someone is reading somewhere, 24/7 who may be able to offer support or advice or just for you to vent to. Hugs to you. Love from someone else’s mum, Ruth x

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I feel so much for you having to deal with this. But as a Mom and having a husband with PSP I feel that your Mom does not want to face or cannot deal with problems in the past. Maybe just let things go and deal with the present and let her know you are here for her now????

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Hi superquest30. Read your post from end to end, while at the same time seeing you as being so like I was at the same age!

I can see you wringing your hands and wondering how the h**l can I deal with this!

You have done the right thing in making contact with this forum. There is no 'blaming' or criticism or guilt here, because we all have experienced what you are going through now. Most of us are older and therefore have more life experience than you do! Like I did, you probably crammed a few new experiences into your undergrad years, but it does not fully prepare you for this situation.

After my graduation, I married, had a son, and then at 23 yrs old, left UK and my parents to live in New Zealand. My parents visited twice, then my mum died suddenly 6 years after we left. I had guilt issues too, so I understand where you are now!

As others have said, don't worry about what's gone on in the past between you both. Being there for her now will show your mum what sort of woman you have grown to be! Show her you care and have grown up! Show her you love her and are there to help! It will be hard to keep your temper many times as this sort of illness is frustrating for patient and carer alike. Just try to talk quietly, and walk away, count to 10, and if you need to rant, we are here and we will listen!

You don't have to do this alone! We will all be here to give help and advice, particularly when you are in a panic, or funding is an issue.

Your mum sounds as if she has accepted her illness. She probably does not have the mental strength any more to deal with the past as you see it. So let it go! Find from her what is important to your mum, and help her complete whatever she wants to do.

Be her legs, her hands, help her to think through difficult topics. But try to give her an opportunity to make her own decisions, or try to gently add influence and guide her to the right decision.

Get yourself some help, ask if you can talk to her specialist so you can understand PSP and its treatment from the specialist point of view. Learn about its progression so that you are prepared, or can anticipate the illness.

Find someone to talk to who can help you emotionally.

Find someone who can guide you with the financial side of caring so that you have support and don't make unconsidered decisions that might be misconstrued by the family or by her culture.

It will be a steep learning curve! It will be a challenge!! Here we all understand the sacrifice!

To do this you will need to put your life on hold for a while. Caring for your mum will probably get in the way of your love life, your social life, your personal way forward, and your work life, but you will need your 'time out'! It may be for 12-24 months, it may be longer. Friendships and working relationships will need to understand that you have this prior commitment and that you are not able to fully commit to them. If the relationship is worthwhile, it will continue and stand the test of time. Work may also need to be part-time, rather than 2 jobs you are managing, and I understand fully the importance that money and experience will have on your life short-term. That is your decision to consider.

I promise you that you will find looking after your mum rewarding, and that you will not regret it! The alternative is learning how to live with yourself if you do not do what you are doing now!

I left my family to help my dad when he was terminal, I looked after my grandkids when the family needed help, and I nursed my husband when he needed me. I don't regret any of it, but I do see that I lost time to do more with my husband while minding grandkids. I have to live with that and it is bearable because that was a considered chosen decision at the time.

I give you all this as I know you are a levelheaded young woman who will take all on board and make wise decisions.

Whatever you decide to do, we will be here to help you!

Big Hugs to you and your mum.

Jen xxx

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Oh my. I wish I could tell you in a way that could convince you how normal what you are going through is. The moods, the temper. Please decide to forgive yourself right now. You have more responsibility to carry than you should. Be kind to yourself. Stay in touch here, please.

Love, Easterncedar

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Dear Superquest30;

I echo the wise comments of our community members above. Enjoy the moments you can with your mum; you will not have her for as long as a young woman should; Try to remember that when you feel frustrated with her: You won't have her for long. Giving her love and understanding now will do so much for your relationhip - you won't need to comb through the past, and she probably doesn't have the cognitive strength to handle it anyway.

As all have said, whatever you decide to do, stay in touch here. You won't find a more understanding and non-judgmental community to be yourself and vent as needed.

We'll be thinking of you and wishing you luck :-) XX

Anne G.

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Welcome. You certainly have a lot on your plate. Too much. Like others I think your concerns about being selfish etc are all perfectly normal. Its called being young !

You have done well to sort out so much. I do recommend you talking to a counsellor. Your mother probably can only cope with the present and passed being helped by talking about the past. You need that support though.

Let us know how it goes, Jean x

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Hi Superquest30

What a caring, brave, searching, determined and eloquent post.

We have all been typical idiots, but that that age when it all started how could you have known better?

It sounds like you really are doing the business now and, yes, its a damned struggle.

Please try not to beat yourself up. You are probably doing a wonderful job, but like all of us it probably never feels like it's enough.

Welcome

Wishing you both the best.

Kevin

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Superquest30,

You have come to the right place for support, care, and resources. While I am from the US, there are others from the UK that post a wealth of information on support available in the UK (especially Kevin_1, it would be worth your while to look at his posts).

While this forum does not replace counseling, I found a signicant release by just sharing with my friends on this forum having passed through/passing through similar situations because of this cruel disease. Our friends here in our home town are loving and supportive, but they dont really understand where my wife(with CBD) and I are as this disease marches on. I have also found help to me by trying to encourage others who are struggling with difficulties like me. No apologies for the length of the post are necessary. It takes a longer post to truly express where you are in your walk.

We are here for you,

Bobby

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Thank you all so much for your responses. It's funny how writings from strangers on a screen can be so helpful

I wrote the post in a bit of a frenzy last night after a splutter/cough/choke episode and tonight a similar thing happened but managed to be a bit more calm about it. Also made some progress by just reassuring mum that I am here and present and there for her and that seemed to help. Small baby steps.

And you are completely right Beads0122 how friends can be so loving and supportive but, through no fault of their own, they don't really understand.

honjen43 thank you for sharing, you have given me new thoughts to weigh up and great guidance

I want to tag everyone but it's just to say thank you again. I really appreciate it. This is a lovely and caring community and I hope I can contribute and help where I can too. Speak soon!!

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