Freedom

The day has come and gone. My darling Daddiky left this earth. I’m not sure what to say but since it happened 4 days ago, I have been yearning to write something. Anything. Probably as a way of processing and dealing with this loss.

It all happened quite suddenly. I was called and told he had pneumonia and had days left. I visited him as soon as I heard. Within 4 hours he had passed away.

Things I am grateful for

• I was there in his last waking hours and that he wasn’t alone
• He died peacefully in his sleep and just after I left
• He didn’t suffer and his death wasn’t drawn out
• I told him I loved him, thanked him for being my Dad and told him no matter what happened, he wasn’t alone and I was there with him

Things that suck

• He’s gone. I don’t get to see him again
• Others didn’t get to say goodbye
• He didn’t meet his grandson

The hours I spent with him were precious. I feared that they were the last but I didn’t think they were. I had already planned that I would get up early the next morning and visit him, spending the whole day with him. That didn’t get to happen. But I saw him just before he died, whilst he was still awake. I will be eternally grateful for those moments with him.

Before I left the house that night to visit him, I grabbed essential oils, an oil diffuser and moisturiser. I thought it would be nice to surround him with therapeutic smells and once again give him a hand massage. During my visit I gave him the hand massage and spent most of the time holding his hand. Shit I can’t believe that was only 4 days ago. I hugged him, kissed him and laid next to him. I showed him pictures of his baby grandson. He looked at me, he played with my hand, he placed his hand on my heart. Those last oh so precious moments with him.

I just can’t believe he is gone. I can’t believe it happened so quickly. I wasn’t ready but I know I never would be. I told him so many times to go when he wanted to over the last year, to not hold on for me. But I also told him I would miss him a lot and be very sad.

Oh Daddiky. I wish that I was writing this blog post about one of many more future visits. I am so heartbroken that you are gone. I can no longer walk into the nursing home, find you and kiss you on the cheek. I can no longer take you out in the sun, sing songs to you, rest my legs on you whilst you played with my feet.

But I know I must not be selfish anymore. You are once again free. Free from restrictions of your human body. Free from pain and suffering. Free to do as you wish, wherever you have gone. I just want you to know that it still hurts for me and it always will. I will always miss you. My life will feel more empty without you.

Ive realised in the last couple of days since you have gone, that I was fortunate to be with you in the last years. You and I, we formed a special bond since you have been sick. Such a beautiful opportunity to be able to care for you, to sit with you, to be present with you. There was no complications, no layers of unnecessary human shit. Just you and me, father and daughter. Forever it will be, me and my daddiky.

Guilt

I’m not sure sometimes which is harder. Seeing Dad or the guilt of not seeing him. Being his only visitor, I find immense pressure to visit him on a regular basis, at least weekly. The pressure really is internal and self imposed. If I have a busy week of work and don’t get away straight from work to see him, or have lots of weekend plans I don’t get to visit him for a week. That’s when the guilt really sets in. For someone who is the only one bothering to visit and who cares a lot for him, I sure do feel a lot of guilt.

Sometimes I wonder if I could do better. Would it be better if I visited more than once a week. Would I be a better daughter, a better person? Would it be better if I spent more time with him on a visit or did more things with him? Does he notice when I can only stay for a short time? Does he mind?

So many questions, only answered by my own mind. People tell me I’m a great daughter and I do so much. That I am doing enough. But I really am not so sure. I’m sure I could do better. We can always do better.

Currently I am counting down the weeks until I depart for my 3 month European holiday. That will again bring more guilt I am sure. Feeling terrible to leave him with no one again. Feeling like I am abandoning him. Scared of being away so long, scared of what could happen. The last time I was in Europe, things didn’t turn out well in the family.

I guess it’s time again to call on my friends and extended family for help. Last time it worked out well and I felt a lot of relief that people were helping me and taking dad out when I was away. Let’s hope it can happen again.

My tip is don’t get old. Or at least don’t get sick and old. Look after yourself. Even if it’s not for you, do it for the people who love you. Do it for the ones that will suffer watching on and helping out when you are sick. It seems a lot of people have the attitude that “we have to die of something”. But do you really want to die a slow and undignified death, unable to walk or talk, relying on someone else for everything. Everything. That certainly isn’t for me. I’m determined to not end up that way.

Out of our suffering comes lessons. Valuable life lessons that we can’t learn when everything is good. We can see our suffering as a burden and just get pulled down by it. Or we can see our suffering too as a gift, an opportunity to learn and to rise above.

Through suffering I’m learning devotion, unconditional love, selflessness and a motivation to do better. Not for me but for you my Daddiky.

Missing

So once again it has been quite some time since I have written a post. Now I am writing from another country as I am living abroad. At the end of February I left Australia to come here to Vietnam for a year of volunteering, something I have wanted to do for a long time. Sadly though it has meant leaving my darling Daddiky.

So now you can guess that this post will be talking about what is has been like away from Daddiky, the longest I have been away from him since he has been so dependent. I never thought I could actually miss my Dad this much, leaving him in Australia was so heartbreaking for me. It continues to be heartbreaking.

I have spoken to him about 4 times since I have been here. The manager at the nursing home has been really accommodating and has facilitated my video calls with Dad. Sadly he doesn’t talk back to me anymore. The video chats just involve me talking with him and him staring back. The manager tells me he doesn’t take him eyes off me when we talk. Its touching to hear that. Its nice to see his face and to know that he is still seeing mine, being so far away from him. I am so grateful for technology.

Guilt sometimes consumes me as I know that no one is going to visit Daddiky anymore. I would visit him one a week or once a fortnight when I was back in Australia and that is the only contact he would get with family and friends. I have some friends that offer to visit which is great but obviously no one can visit him as much as I do. I am here in Vietnam helping others when sometimes all I want to be doing is spending time with Daddiky and helping him.

As I mentioned before, I have really been missing Daddiky. Before I left, we were spending lots of quality time together, going to the park, going for coffee, drinking beer and eating icecream. I was thoroughly enjoying the time we had together, as heartbreaking as it could be sometimes, I was loving having special moments with him. There is something so special about just sitting with someone, no pressure to talk or to do anything. All there is to do is just be. Be with each other and enjoy the father and daughter time. I really miss those moments and i’m so looking forward to seeing him in November when I go back for a wedding.

I guess now that he is much worse than he use to be and because I am away for 12 months, I need to accept the reality that he may die while I am away. its such an awful thought and i am detached from the idea. but it is reality. Shitty reality. I will be back in Australia in November and I am really hoping that he sticks around until then so I can see him. I’m not sure I can be happy with myself if he does die. I know the usual thing that people say, you go to live you own life, you can’t stick around and put your life on hold. At the same time though, who is there to spend time with Daddiky, to make sure he is ok and that he is feeling loved.

 

Still Daddiky

After a day like today, I feel it’s time to do another blog post.

I went and saw dad as I was in the area. He was laying crookedly on his bed, I guess he’d been put down for a nap. He had his eyes open, fiddling with part of the blanket or edge of the bed. I said hello and refocused on his face. His top dentures where drifting free from the top of his mouth. I tried to get him to put them back but no luck. I tried but no luck. It seems they were not fitting.

He looked so feeble, frail, helpless, sad and absentminded. I was holding back tears as I consulted with the staff about getting his dentures looked at. This was a man who would have never admitted to me he has false teeth, let alone have them taken out of his mouth by me.

Today, as always, there were moments of positivity. I can always find the goodness. He pretty much transferred into the wheelchair by himself. He indicated that yes he did want to go out for a walk. Small little things that soften the blow that is dementia.

We went over to kings park and enjoyed the afternoon sunshine, listening to the birds and enjoying just being. He smiled at me when I made silly noises like the ones he once made. He played with my hand as I held his, just like he use to. That was nice, a reminder that he is still my dad and that he is still the person he has always been.

After leaving dad, I spoke to a close friend who has also had a parent with dementia. I was feeling pretty heartbroken and wanted someone to reassure me. She reminded me that he, just like many other people with dementia, are living in the moment and are rarely distressed. It was more upsetting for the people around them then the individual themselves. I needed to hear that. Many other wise words were spoken and I’m grateful for that. Thank you friend.

So once again I spent the rest of the day consoling myself, doing things I enjoy and just being gentle with me. Sometimes I need looking after too.

Fear

Last night was a first for me and dad. Firstly we were up late at night together, until after 12. Secondly we sat in emergency together.

I got a call from the nursing home about Dad, saying he had a fever and symptoms of the flu. The doctor had checked him out and they would monitor him, if the fever didn’t improve then he would go to hospital. Stomach turning.
A few hours later I got a call. They said he was off in the ambulance to the hospital to get more of a work up. I felt weird.

I left my Saturday night plans and went to the hospital, 21:45. I was feeling a little scared and out of my body, not my normal self. I had gone into survival and rescue mode. The anything can happen and sometimes it end up really shit mode.

I helped with the admission paperwork and then went in and saw Dad. He smiled at me, just the slightest turn up of the corners of his mouth. He looked feeble and cute. A cute and sick old man. We went through into the admitting area and I answered all the questions for him. He didn’t say a word.

The fear went. The unknowing went. When I saw dad all I felt was relief and I knew he was going to ok. Everything was going to be ok.

Bloods, chest xray, obs. We sat and I held his hand, he played with my fingers. He touched anything he could see, the oxygen thing on the end of his fingers to the folds in the blanket. We sat for hours together and the time just flew by. Turns out it was pneumonia but he wasn’t too unwell as his bloods were looking good. They sent him back in an ambulance to the hospital, 00:50.

A late night out with Dad. Not how I thought I would spend my Saturday night but it was nice nonetheless. Unrushed moments and smiles from my Daddiky. I’m not complaining.

Turns

It’s been a while since I’ve written a post. Mostly due to forgetting or not having the need.

I felt tonight that I needed to write and that I wanted to write. The reason for this is a visit to my dad after work today. It didn’t end that well. Not in my heart anyway.

It started off being a lovely visit. He had finished dinner and was sitting and listening to music in a quiet place. He seemed content. I washed his hands and his face to make him feel fresh and it was nice to do such a simple but important thing.

He then started to get up because I was leaving. I walked with him for a little bit, and surprisingly he walked well today. We sat down in another area on some chairs and I said my farewell whilst one of the carers was getting him to take him to his room.

I walked and he tried to follow , the carer encouraging him to come with them in a kind and gentle manner. Then the moment happened. He reached out, grabbed my hand and said “no no no no no”. I fought back the tears. It really hurt me to see him like that. I then left and he waved me out.

To me it felt as though he was saying no to me leaving or no to me leaving him there. Thinking about it now and my eyes sting with tears. My heart hurts. Whether it’s me overanalysing the situation or it being the truth, it doesn’t change that I’m feeling the way I’m feeling .

Dementia is really awful. Sometimes I have to think hard to remember the way he was before. When he was more of my dad then me his carer. Moments and life can just turn around so quickly. To good or bad.

This is my addition this morning- this post wouldn’t submit last night so perhaps this is why, so I could write more.

I’m pissed off. Pissed off that I get to see my dad go through this shitty disease. Pissed off that it feels like I’m doing to all alone. It’s not fair. Not bloody fair at all. I know there will be lessons I learn from this and it’ll make me a better person. But in this moment it’s so bloody shit. Sometimes I can’t believe I’m actually going through this. That I am a 27 year old with a dad with Alzheimer’s in a nursing home. Unbelievable.

Don’t get me wrong, I’m very blessed and I do have lots of wonderful things in my life. So I still think I’m lucky. Sometimes though it is healthy to sit back, see the situation for what it is and mourn for it. I know this blog post seems superficial and like its hardly even scratching the surface. That’s the thing though, it isn’t. Its hard for me to get out those feeling because I have bottled them up as a way of surviving. I’m getting better.

I hope I’ve made no spelling mistakes. Ha.

Learning

I saw Dad again today. He was in his bed having a nap. Looking so innocent and feeble. He was saying a few things, maybe a few English words mixed in with mostly Dutch (I can’t understand Dutch). After a few nonsensical ‘sentences’, he stopped. Most of his conversation with me remains in the look in his eyes, not taking his gaze away from me. Also in his touch, I held his hand and he moved our wrists around, just part of his old quirks.

I asked if he was happy. He said yes. I’m going to take that as truth. He doesn’t really reply to me much.

I also asked if there was anything left in his life that he wanted to do. Silence. I’ll take it as a no.

Moments that I treasure
– When I left I said I was going and I pulled the covers up to his neck. As I walked out the room he lifted his hand out from under the covers and was waving. He kept waving until after I had left the room, because I walked back in to see if he was still going. So sweet.

After seeing him I went and visited his old friend. I got CDs off her to give to Dad, he is very musical but I’m not sure what music he would like and she does. I learnt some new things today.
– During the WWII in Rotterdam as a little boy, Dad had so little food, he was skinny and sick, the German soldiers were nice to him and gave him some of their food
– As a little boy in WWII he would lay on the roof of his house and look above at the planes fighting and dropping bombs
– My Oma (Dad’s mum), would work cleaning houses to make money to pay for Dad’s music lessons.
– Dad was amazed the first time he heard Jazz, it was a live band that came from America and played after WWII. He had said that he couldn’t believe his ears. The crowd all loved it and clapped for 20 minutes, they couldn’t stop
– Since being a little boy he decided himself that he wouldn’t eat meat because he thought animals were so lovely, he would think to himself why could anyone eat a pig, they are so nice.

It was pretty special learning those things about Dad today. His friend spoke so kindly of him, how intelligent he was, how much they loved sharing music. It was so nice hearing someone talk lovingly about Dad. I enjoyed learning new things about Dad when he was younger. I feel that she still has so much to share with me.

So today was a lesson for me. That amongst the hurt and heavy heart there is still goodness. Knowing that there is another way I can learn about Dad is such a wonderful discovery, more to look forward to. And Dad still knows who I am, that even without intelligible speech he can still communicate with me, express his love and he still have that special part of him alive.

Reality

What happened next with Dad? It was decided at the hospital that is was probably a good time for him to go into care. It’s funny how it happened, I was updated about his admission and then suggested for him to go into care, almost all in the same breath. It may seem harsh but I didn’t disagree, this had been coming.

So the search for nursing homes. That was stressful. Working in the health sector myself I thought it would be easier. No. It’s not at all. It’s all very confusing and overwhelming. Especially doing it alone. I got a little bit of help from one of my sisters but that was it. I felt pretty alone.

A friend and I looked at nursing homes one day together. I’m very thankful for that, it was so good having her there. I decided on a place and in dad went.

That was just over a year ago now. It’s so crazy how things in life change in an instance.

It has been a rough road since he went into hospital and into the nursing home. I would visit every week by myself and either cry while I was there, leave crying, or both. Writing about it now even brings a sadness over me.

Some days have seen better than others. Some days I feel so awful when I leave. Guilty. Pitiful. Lonely. I know he is quite content there and safe. But it’s hard for me. Some days it so fucking hard.

So I guess here comes the self pity. Amongst all this, the heartache and the pain, I’ve been alone. As you can guess, seeing someone you love, especially your parent go through this is very hard. Doing it alone is so much harder. He has 5 children. 5 children! And only 1 is there. I know part of it is about the person he was and how he treated others. But I could do with support. That’s my gripe. And I should probably stop there.

Ending on a positive note, I saw Daddiky today. He was content. I took him to his room and rearranged it and set up a CD player. Then we sat in the beautiful sunshine whilst he drank his tea. I put my legs on his lap and it was nice. Just being. Moments like this make me happy. And I treasure them and am thankful he is still around.

That’s it for today 🙂 Thanks for joining me.

New Beginnings

Welcome to my first blog post! What an experience this will be, putting out my thoughts and feelings for all to read.

My name is Carli. I am 27 years old. I love making raw chocolate, cooking and I live in Fremantle, WA. I have a cool cat called Felix. Friends and family are so important to me and I love making people happy. I am an Occupational Therapist and a Henna artist.

Oh and I also have a Dad who has Alzheimers Dementia.

That is why I am here. Here typing these words and also here because I was blessed with the gift of life thanks to him. I am not sure the point of writing a blog about it, my thought was one day that it might be an idea. So whether or not its a good one, I am doing it anyway. And I am by no means an experienced blogger or writer. But hey, what the hell.

So what it is like having a Dad who had Dementia? Well let me start from the beginning.

My dad was diagnosed with Alzheimers Dementia in 2012. I started seeing early signs in 2009 when he was forgetting things that normally came so easily to him. I’m not really sure what I was feeling at the time I heard the news. I guess it wasn’t much of a surprise to me, just confirmation of a pretty shitty reality.

Things back then weren’t too challenging. His memory wasn’t great but he was managing with all the basic daily tasks he needed to do to live independently. My siblings and I got him some services at home to just keep an eye on him and support him in whatever he needed such as shopping and cleaning. Not the easiest thing for dad or the support workers at first, but he soon got use to it and I think he enjoyed the company. They liked him.

Then things changed. Kind of slowly but at the same time pretty quickly. On a couple of occasions he was found wandering out at night and couldn’t find his way home. This was on my birthday in October 2014. He seemed happy when we went and check on him after. Then again apparently it happened while I was away in Bali in Jan 2015, not that I was told.

The final straw was Feb 28 2016. A pivotal point in both our lives. When he was found wandering the streets about 10 km from home in the middle of the night. He was taken to hospital by police and couldn’t tell them anything about himself. They found out who he was and I was contacted.

Seeing him in the hospital was fucked. Not the nicest language but that pretty much sums it up. Seeing Dad there, talking all Dutch to me (his 1st language), so confused and disorientated. Having someone sit at his door to stop him from absconding. It was clear to me that shit had got real. The harsh reality of Dementia had come and bit me hard.

On to the next chapter of this challenging disease. And on that note I think I will leave it for another entry.

Thanks for reading 🙂