The Rollercoaster Ride

Of Emotions

I have been up and down, positive one minute, tearful the next.

Dad is fighting all the way.

We had prepared ourselves and all said our goodbyes.

The Doctor had done some tests and diagnosed a condition that is common with Parkinsons patients at the end. He has excessive protein in his system , which causes rapid dementia and then loss of the will to live.

He was ( and still is ) unable to string an audible and sensible sentence together, but has gone from not eating and drinking to polishing off a whole roast and tea and cake!

He has confused the medical staff once again with his sturdy spirit and his unquenchable thirst for life. I am not sure I could fight so hard if I was so sick.

They are now saying he may have had a stroke instead and are uncertain of the prognosis.

I am not sure how to feel - I know he is failing. I am prepared for him to go. In some ways I grieved for my "Dad" years ago when he disappeared into this illness, but it is still so, so hard to let go of the physical presence of someone who has always been there.....

It is a waiting game. How long will he fight on - I don't know.

I spend what time I can with him. It will never be enough, but life goes on. We have all been sick. I am on two weeks of antibiotics for an infection. My son is as well, for a nasty flu type bug that had him hallucinating 3 nights in a row.

Sleep? Do I remember you?

Thank you so, so much for the kind comments and e.mails - they mean more than you know. 

I am missing my space here so will dip in and out as time allows. 

Cherish those you love - and always be careful with your goodbyes.

XXX

Simply Heartbreaking

My Dad

Please forgive me for highjacking my usual Frugal Friday post for a different post today, but I am so cross I just need to speak.

As you are aware My Dad suffers from the incredibly distressing disease Parkinsons. 

He deals with this with grace and dignity. 

He never knows from one day to the next if he will have a great day or a bad day. He cannot predict if he will freeze and be unable to move for periods of time or not. He takes regular medication to help these symptoms, but due to the nature of this disease these do not alleviate all or sometimes any of the symptoms.

He lives life as best he can with this condition. He chooses to go out and often face judgement from people who perceive him as drunk or uncommunicative. However, he perseveres, otherwise what quality of life would he have if he was forever shut away from others and the world. He was a University Lecturer , used to communicating and mixing with people constantly.

He has been attending a group known as "Age Concern" each Friday where he can mix with other older people who struggle to get out. He enjoys these days, takes his instruments and joins in with activities that are provided. They are able to give him his medication at his regular times. 

We pay for this privilege.

That is until earlier this week, when we received a letter telling us that they were terminating my Dads invitation to attend Age Concern because of his condition. They perceive it is too distressing for him to be seen by others when he freezes and too distressing for others!! 

What a load of rot. 

If my dad was distressed in any way by what others thought of him, he would never, ever go out. 

As for the others, each one of them has a condition that determines their attendance there. How dare they discriminate against someone with Parkinsons because the symptoms are more evident.

The nurse ( yes she is a qualified nurse ) says that they are unable to give extra medication to alleviate his freezes. This just shows her ignorance of the condition. You can give medication when he freezes, it may or may not help. If I had the secret to a magic pill to get Parkinsons patients moving at a moments notice I would be a very rich lady! The best thing to do is to allow him to sit quietly until it passes. All Parkinsons patients have phases that they call "on" and "off" . You can tell just by looking at him what phase he is in. A qualified nurse should be aware of this. I would have been more sympathetic if she had said " I'm sorry, but I just don't know how to cope with his condition." 

I don't argue that he is sick and does need care during the day . This is why my Step Mum so values services such as this that provide some element of relief for the constant care that she single handedly provides. 

The letter we received is appalling in it's discrimination and lack of understanding and my Dad is understandably mortified. We shall not be keeping this letter private.

 A copy is being sent to the paper along with my Step Mum's reply. 

It is just not fair.

The limited activities that he can enjoy without us around are gradually being taken from him. He has been given two weeks 'notice' to leave and I am taking him there today so he can say his goodbyes to the friends he has made . I have a few words to say myself , although I shall be restrained in front of my Dad . I don't wish to add to his distress. Enough is enough....

It is simply heartbreaking.

Caring for a Parent

The Hard Decisions

The time has come to make a decision about my Dad. 

My Dad is ill with Parkinsons and has reached the point where it is no longer manageable to have him at home. We are taking the hard decision to find a "home" where he can get the round the clock care he so desperately needs and my step mum has valiantly tried to give him. 

How can taking that decision ever be easy?

She came over last week to talk it through with me and to see how I felt. I didn't have a particularly close relationship with my Dad growing up. He was often away and I was always closer to my Mum. He is still my Dad though and I don't like the idea. 

No, not at all.

 But this is not about what I want. I don't have to clear up his mess every night. I don't have to lift his heavy weight every day when he falls. I don't have to try and administer drugs every 3 hours or change his pump. I don't have to get up numerous times every night because he is calling and confused. I don't have to put up with his tempers and his confusion. My Step mum does that. She had a triple bypass a few years ago and has to be aware of her health.

It is her decision. 

When there was talk about fitting him for a helmet to protect him from falling we realised it was time. She cannot pop out anymore, even for 10 minutes. He simply needs round the clock care.

We took my little girl to the theatre over Christmas to see an adaptation of the kids book The Snail and the Whale by Julia Donaldson. 

They told the tale of the Whale through the eyes of a young girl and her Dad who was telling the story to her. 

The main part of this adaptation was the girls relationship with her father and how much she adored him and the way he told her stories. He then has to go off to sea and she doesn't see him again. There was something about this, and I don't know whether Christmas had something to do with it, but I found myself welling up constantly. In the Theatre. With the children .

Stupid, hormonal, middle aged woman.

It's not even that my Dad ever read me stories.

It's just that I hate that he has to go into a home. 

He knows enough to know what is happening and he is worried about it too.

It's just so heartbreaking to see, but I know that he can't be watched every moment when  he is at home and the next fall he has just might be his last....... 

So, as hard as it is, the time has come.

Things will not be the same again after this year......

Dad.

The role reversal.

Somewhere along the line, I'm not sure I could pin down exactly when , the role of parenting seems to have been reversed. It wasn't a sudden change , more of a gradual shift in situation, priorities and health.

However, although it is still assumed by most acquaintances  when I say my parents live locally that we get plenty of help with the children, the reality is quite the opposite - I am the care giver not receiver. My Dad and Step mum actually moved into the next street to be nearer to us , so I could help out if needed.

My Dad has Parkinsons.

He gets very confused.

He is not very mobile and sometimes cannot move at all.

He lives at home with my step mum who is amazing and without her he would be in a nursing home. She fights hard for his care and organises his life so he goes places and does things . 

But she needs a break too.

 So, I have my Dad for a day when I can.

 I help with bits of care when my step mum is away .

 I take him shopping for bits and pieces he wants and out for coffee at garden centres ( they have larger aisles for his walker) .I  help when she goes away with the rota of care that she puts together - a combination of carers and family to look after him just so she can have  a few days away without him. It keeps her sane. Sometimes it is as simple as popping in , like today, for an hour to give him lunch.

 But I didn't feel like it.

I knew it would be hard and I was tired.

Sometimes I wish I still had parents who could come and help me - how selfish is that when he is going through so much?

I know it's because I am tired - weeks of demanding children, a husband who is working every hour that he can find, too much to fit in my busy schedule at the moment, children who still need more and I'm stretched. I felt I had nothing left. Everybody wanting a piece of me.

The moment I walked in and forced myself to call out a cheery " Hi Dad" and saw him sitting there drooling, with chocolate all around his mouth, talking nonsense about whether he had fixed the rail for the curtain correctly, I knew he was off colour and it was going to be tough. For the record he won't have been near fixing a curtain rail for the past 10 years. His mind plucks random information from the past and thrusts it into the present making it seem real to him.

But, there are times when I just can't listen to him talk rubbish again.

There are times when I have to hide how I am feeling from him.

There are times when, if I am totally honest, it just annoys me - how bad is that?

 I was so tired I had nothing inventive to say at that moment so I wandered into the kitchen to make sandwiches and a cup of strong tea for him. He had always been very driven and motivated by his own ambitions and I think this illness brings the worst of that side out of him . He focuses only on himself, no one else, but then wouldn't I - it is an awful , lonely walk and I have cried with him many a time. They say to try and separate the person from the illness helps you to cope, but they are so intertwined now that is hard to do.

Don't get me wrong , I love my Dad and I would do anything for him, but I spend hours popping pills in his mouth, manhandling him into the car to take him out for some fresh air, listening to his ramblings that often drift in and out of sense.....sometimes I would like to hear him ask in his moments of lucidity, how I am, but he never does anymore. Sometimes it is much too hard to see your 'Dad' sitting there like that, but he is not your ' Dad' anymore. No one asks me if I am dealing with it alright - I am just expected to.

Somewhere along the line his role as " Dad" changed , but I couldn't tell you when that was, only that the father I once knew isn't there anymore. 

But I can't grieve for his passing because he hasn't died .

I can't give up on him because he IS still my Dad.

The Dad I remember left long ago. I  can't pinpoint when, he just kind of got swallowed up gradually by this disease until there was not much left apart from a vague physical resemblance.

So what do you do?

You sleep.

You recharge your batteries.

You put a smile on your face and you continue to choose to love and care because the day will come when you won't be able to anymore. 

You do that because if you don't, who will?

You do that because deep down you'd want someone to do it for you.

You do that because you do deeply love him.

You do that so you won't one day regret that you didn't.