Daughter and dad story

Dad has been living with Parkinson for 15 years and now more recently 4 years lewry body dementia. In August 2020 dad was placed in a nursing home. Mum struggled badly, due to being all, visits being unpredictable due to covid and attempted to take her own lift in April last year, leading to be section for 6 weeks. Due to her struggles I have been more involved with dad, visiting him more, now gaining essential care status meaning I can visit with no restrictions and with no appointment. I do love spending this time with him everyday, making memories and just being there makes him more relaxed. It is getting to the stage where dad is taking many falls so so me being their helps keeps him relaxed and we ask for assistance when needed.
Hoping to spend around 5days a week for 2-3hrs each time.
I have witnessed more behaviors that my dad would be horrified about if he knew, of course I shall never tell him and remember those issues never came from my dad, it was the disease.
We are going through a battle of the brain and mobility so dad is taking falls regularly, currently in cast for broken hand and fractures to both cheek bones. It was 24hrs in A&E that prompted me to become an essential care worker.
Dads mind is so unpredictable, one minute fine, perfect conversation, next random conversation and agitation. Time will tell but I am hoping the regular visits will hope settle dad more and give his brain more to process, so getting tired out and not attempting to do too much walking alone.
Wish me luck.
A daddys girl who has witnessed more that a daughter should ever witness her father doing…

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Oh my goodness, this must be heartbreaking for you. But what a lovely daughter you are with all that you are coping with. Lots of luck and a big virtual hug for you too :smiling_face_with_three_hearts:

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Hello Floss1
I just wanted to thank you for posting your story. Although I fully accept and do not have any illusions that it has been the most difficult time for you and probably over an extended period of time, trying to sort out what’s best for your dad and seeing what it has done to your mum, you write with such warmth and love it is truly inspiring. I do not have to tell you what a complex and difficult condition Parkinson’s is for everyone involved. I live with it myself and have done what I can to arrange my affairs so my family, know what I want and hopefully this will help as time goes on.
I wrote this some time ago

Remember Me

No-one knows what the future holds
But one thing is certain for me
That over time my life will change
Since Parkinson’s sets no- one free

And as it travels its relentless path
I don’t know what its impact will be
i have no choice and can live with that
But to you I make this plea
That however hard it looks to you
Never pity or be sad for me

I may not be the person I once was
And need help to do most things
I may not be able to talk to you
Or laugh at the the comedy life brings
But somewhere deep inside
Even if then not easy to see
Is the person I always was
And how I’d like you to remember me.

You are doing precisely that. and still enjoying time with him now. It is reassuring to me to know it is achievable and I hope my family and friends will be able to do as you are.

Your parents must be very proud of the remarkable person you have become. Remember and cherish those brief moments when your dad is ‘back’ because there his pride and love will be clear to see.

I hope your mum is OK and I send love and best wishes to you all
Tot

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Floss 1 oh my goodness what a remarkable and resilient person you are. I can resonate with your story completely. My husband, who is at a similar stage to your father, is at home with 24/7 care. Like your mother there was a period in time where I felt completely broken by all that I was dealing with. My older daughter has been our rock, ensuring we both got the right care and now life is as good as it can be given our situation

What your father needs more than anything is stability,probably to rest more and stop trying to be so active. By continuing to visit you are giving him the knowledge of the continuing love of his daughter and this will help to sustain him and work well on his cognition,mental state and reduce the agitation.

I have finally accepted that there is nothing more I can do and the husband I had is no longer there for me. All I can do is provide him with the best possible care and environment in memory and celebration of our long, rich and fulfilling partnership. Now having accepted things as they are, we can celebrate and remember all the good times and also allow the therapeutic power of black humour when dealing with all the various eccentricities and illogical behaviours

At the moment with so much going on and trips to A and E etc, it might well be difficult to process just what is happening now, but eventually when things settle you will be able to remember the Father you knew and celebrate the obvious strong bond you had.

Yes, this is really hard but you are doing so well. Love to you and your Mum. xx

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Floss I so understand where you are coming from. Another daughter here and my relationship with my dad hasn’t been an easy one. The last ten years have been hell and I could write the book on behaviours. No matter how much we try, my dad won’t cooperate with anything we do to try help. I cried on the phone today as I got a crank call and answered it, thinking something had happened to him. We are worn out but he is my dad. I have to admire his spirit and resilience. PD is a cruel disease. Like yourself, any visits for me are ones to be relished and treasured. Hold on to the memories and mind yourself xxx

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Thank you for your kind messages. Keep strong, keep loving them and ease their suffering for as much as we can. And make sure you look after yourself too, it’s important, that’s what people tell me, so starting therapy next week. Please be kind to yourselves and sending you all strong hugs. xxx

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Hi Tot,

What a beautiful reply and a gorgeous poem. I feel the same as you, I think. Thank you for sharing :two_hearts::smiling_face_with_three_hearts:

Thank you Jacky3. My replies are always written with the originator of the post in mind, it is therefore all the more gratifying when it resonates with others. Your very kind words are much appreciated.

Another daughter and Dad situation here (my first post here too!) My dad was diagnosed 10 years ago (although we all knew well before that). I’ve just taken over his care as he suddenly went blind at the beginning of December. Up until then he was living independently other than a cleaner (under duress) and we were driving him around. He has so many other serious health issues that Parkinsons was the least of our worries to be honest. Now, the more I’m finding out about it, the more I can see why we’ve struggled so much with personality changes etc. When I can’t sleep, I’ll be perusing as much of this forum as I can because, as I’m finding is usually the way, you get a LOT more information from families and sufferers about any condition, than you ever can seem to get from practitioners and specialists.

Thank you for posting your story. From one Daddy’s girl to another, have a :hug:

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Hello Henrys-Cat and welcome to the forum. Importantly you can trust the info here as it comes from people who are living with Parkinson’s in one way or another. You can’t beat straight from the horse’s mouth. Hope you find the reading helpful but if you have a question and can’t find the answer do write a post, generally speaking someone will be able to help.
Best wishes.
Tot

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Wow, your poem made me cry.

I am a father was diagnosed with PD June 2021, I to have a daughter who does so much with me, I am fully mobile currently, your poem is so true, thank you.

Hello JAujla
It always amazes me when something I write generates such a strong response and leaves me at something of a loss to know how to reply, so I will just say thank you and I appreciate your taking the time to comment.

I note that you have not had your diagnosis very long and do hope that you are getting on alright.
Tot

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Hi, this is my first post. I am still finding my feet but gaining strength from the helpline and reading on the forum. My father has recently been diagnosed with Parkinson’s but my mother and I believe it has affected his behaviour for a very long time. Our relationship has never been good and my Mum’s struggled for years with him and even more now. However, he has received no support from his neurologist or nurse and neither has my Mum. However I feel about him and his treatment of us, no one deserves to be as anxious as he is now, nor do they deserve to be written off as he has been, especially as he seems to be deteriorating very fast. I am really concerned about my Mum and him, especially as I live over four hours away and my husband is very unwell at present and has yet to get a formal diagnosis.
Sorry for hijacking the thread of those who are clearly very close to their dads and doing a superb job in horrendous circumstances. I have been full time carer for my grandfather, my mother in law and my aunt in law and part time carer for my Gran, all of whom I was extremely close to, so I can empathise and sympathise. I would, however, be very grateful to anyone who has advice for my Mum and my father…and me!

Hello Annie

I always feel it is very hard to cope with someone who has probably been difficult for a long time and they then get a really challenging diagnosis. My heart goes out to you and your mum. Parkinsons is such an insidious disease it changes personality often way before diagnosis and if his relationships with family have always been challenging the fear and anxiety that accompany diagnosis can only makes things much harder. Just because someone has serious illness does not mean you can wipe the slate clean of all that has gone before, he is the same person that he always was. However as you say no one deserves to live with such anxiety and all I can suggest that worked for us, was to invest in the services of an experienced clinical psychologist. My husband had ptsd following prolonged stay in hospital and used to have very serious panic attacks lasting upto 4/5 hours. The psychologist gave us a variety of strategies to use and over time things have settled, although there are still triggers. In your situation I would shout out loud to your neurologist, parkinson nurse, your parents GP and the mental health team(CAMHS) asking for a visit and an assessment. If necessary ask to be referred to a different neuro who specialises in Parkinsons Disease. Ask Carers Uk for a carers assessment for your Mum, they have loads of information and will support your Mum to get the help she must need. It is really worth stressing your mum is the key to holding all this together as if she breaks your fathers care will fall apart. As a daughter you can only do the best you can, your priority is your husband and fingers crossed the uncertaintyover his diagnosis will soon be over.

I would just like to take this opportunity to say to all daughters supporting their Dad’s, please, please please look after yourselves and your own immediate families. When the dynamics in the family change, and there will always be one family member who does more, things can so easily fall apart and family relationships can change irrevocably.

Much love to all daughters of PWP you are amazing

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Yoga lady, thanks so much for the kind and extremely informative reply. That is very useful and I have made notes of who to take up the fight with and for my Mum’s encouragement also. It is truly appreciated. By the way, I love your name. :slight_smile:

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Hello Annie875
You have absolutely no need to apologise for ‘hijacking’ the father and daughter thread. While it is of course good to hear some positive stories, I have no doubt that it will all have been plain sailing for any of them. Your story is as valid as anyone else’s.

I doubt that we can tell. you much about the caring role when you have such a breadth of experience. It must be a source of sadness that your relationship with your father is not close as it was the others you cared for, although I expect you have long since accepted this.

You must feel you are being pulled in all directions and I’m afraid I don’t have any magic solutions for you, just a few thoughts which please do feel free to ignore if you wish - I can only write as I see it based on what you have written.

First is to say you’re doing your best but you can’t be all things to everyone. This may sound harsh, but in a way, if your mother has never had a close relationship with your dad the Parkinson’s was unlikely to change that and - I am playing Devil’s Advocate here just to put some questions in your head - how do you know things are harder for your mum and in what way. Has she actually said so or is it what your head is telling you because you live some distance away and can’t support your Mum as much as you would wish. Don’t get me wrong she is clearly in a very difficult situation and is probably very tired and so on but I think it is important to be clear in your own mind why you think as you do and how accurate it is. It is a very crude method of trying to see things objectively without the emotion (it’s not easy) because it may allow you to identify the most pressing issues. It’s not uncommon when family are some distance away that when you do see in your case your mum and dad the situation can appear absolutely dreadful with major deterioration when in actual fact things are ticking along much as they always have but the Parkinson’s diagnosis carries the assumption that things must be worse. Don’t get me wrong I am not saying your perception of your parents circumstances is not right, only to be aware of how you have formed the views you have.

Again this will sound harsh but there is only so much you can do to support at a distance and you have a husband who has need of your support. In a way he is arguably your main priority; as your parents have never had the best of relationships this could be seen as more of the same.

I stress I have no wish to upset you and fully accept that the situation in which you find yourself is complex has no easy answers. However I am also conscious that this relationship in which you have a caring role is markedly different to those you’ve had before all of which you describe as close so to that extent you are treading on fresh snow and as I said above if you are able to see things as honestly and objectively as you can you may be able to put a different slant on things or think of other ways to support them.

Having said all that I totally agree your dad shouldn’t effectively be written off. It may be worth a call to the helpline, they may be able to give you some ideas as to the best way forward…

Please do let us know how you are getting on and remember to look after yourself too.
Best wishes.
Tot

Hi everyone and thank you all for your posts. I’ve read the one’s above it they moved me and made me cry. Good tears, tears of love and loss. I’d like to stand in this lovely community and share as I’m feeling quite overwhelmed but also seeing how much your accumulated knowledge and experience can help me and my Dad.

My father has been diagnosed with parkinson’s for 8 years and is in his 70s. He has lived on his own for 35 years and we recently moved him into an assisted living retirement accommodation to be closer to me as I am his only son and next of kin. Just recently his P has becoming overwhelming in particular his anxiety and lack of confidence. Dad is back in hospital for the third time in 6 months - this time a fall and a subsequent UTI. He’s still in hospital over two weeks later and is trying to regain strength & mobility but he is having hallucinations and paranoid delusions. I visit him and can calm him with my presence but I know I can’t fix him. Having read some posts here I now understand I may be in for a marathon and face deeply hard and emotional situations.

Ok, I surrender to it. I send you all love, patience and strength. Please send me some back. I’m losing my most loving, gentle, peaceful father to Parkinson’s and it is so so sad.

Sometimes he finds problems with everything - self-sabotage of a sort - even saying newspapers are too difficult to read, magazines too heavy and ipads cut out. So I can help but also I can’t help. That’s a hard situation for me to live with. I know I have to face the emotions that brings and I am learning to become friends with emotions I previously thought were bad and hid from. I’ve always thrown myself into things and generally got results. That won’t work here will it?! I have good support around me (including counselling) and a loving family and I am prioritising myself but wow this is hard, and heavy stuff.

I am thinking Dad might benefit from talking to a clinical pyschologist. Would anyone recommend that?

I look forward to being a part of this community, thanks and best wishes,

Charlie

Hello charlieA
my mum was diagnosed with PD in November, but in hindsight think she has had it a good few years more, what with lockdown and her living 2 hours away at that time, it was so difficult to see her downward spiral. We have now moved her and her husband around the corner to us so as she also suffered a heart attack in December, so more medication! At least I will be able to keep an eye on her more than ever before.
My heart goes out to you, I know how you must be feeling, as I am feeling it too - we are helpless aren’t we, I find myself, for the first time facing something that I simply can’t change or make better. My mum is on Madopar and seen a consultant once, I really feel she needs to be seen again for her mental state of mind, as she is often down and of a low mood, also some physio might help, but then I’m thinking is she better off just being left to be, or should I be dragging her out of the house even if it were to a coffee shop, I really don’t know how to play it. It is so difficult isn’t it seeing someone you know and love gradually slipping…
I hope all goes well for you and you’re dad, all the best.
Pam

Hello Charlie

Firstly well done for being so open and posting. I read your post a few days ago and have been thinking how best to reply.
Firstly the priority is your fathers delirium from the UTI and being in hospital. There is a very serious situation going in some hospitals regarding the treatment of delirium particularly those with Parkinsons. It is important to check his treatment. Is he placed in a quiet part of the ward NOT near a busy thoroughfare? Is his fluid intake at least 2 litres per day? Is he constipated? Is he getting his medication on time? Is he getting at some form of movement/exercise/physio daily to increase cognition as well as mobility? Are the staff treating him with respect and understand the way he is now is not his baseline?. I really understand how difficult it is to deal with and process the hallucinations and delusions but these may well subside especially once he is able to come home.
I would recommend using a clinical psychologist, once the delirium has subsided to deal with the anxiety and probably depression. Is he on any medication for this? The psychologist should be familiar with Parkinsons and CBT can be a very effective tool.

When a close relative has Parkinsons it can be very hard to understand that you can’t “fix” it and very hard to stand by and watch the inevitable progression over time of such a cruel illness.

I hope the counselling will give you the strength you need to deal with this challenging situation. I myself had counselling following my husbands six month hospital stay and subsequent deterioration and still find it gives me the strength/backbone I need to keep going and also to live my own life, although this is always work in progress.

Your father is fortunate to have such a caring son and family support. I send you much love. peace and happiness.

Hello CharlieA and Malteser too
-I have made several attempts to respond to your posts but the truth is I can say little that will make a difference. You say it like it is, a simple truth which is at one and the same time awful and complex.
I was diagnosed with Parkinson’s just over 12 years ago and it was interesting to read about your feeling helplessness because I too am familiar with that. I have taken steps to put my house in order to make it easier for my family as time goes on, but I am only too aware that it may not be enough and even if it is, there is nothing I can do about the emotional rollercoaster that will probably come with it. Living with Parkinson’s demands much more than simply coping with the symptoms and all of us will have gone through many different experiences to reach that point of acceptance - whatever that may mean to the individual - which allows us to get on with living. We also have to acknowledge however, that the time may come when we are not able to make our own decisions and the implications this has for all concerned. This would seem to be the point you are now both at. Sadly I can’t change that, wave a magic wand and make everything easier. What I can say is that if, as and when I reach that point I know my family, and others involved will do their best by me. That’s all they can do. It is enough. I don’t want them to beat themselves up about decisions they may have to make on my behalf nor live with guilt. I can’t of course prevent them feeling those things but hope they know it’s not how I see it. I think it highly likely your parents will think as I do - you’re doing the best you can, it’s all you can do and it will be enough.
My best wishes to you both
Tot