Been lurking for answers; first time poster.

[croquemadame]

Hi everybody,

I joined this website a few months back to find some common ground. It helped to read similar situations, but I found it difficult to introduce myself into an already well-established community... So I lurked.

Now, sitting here with a solid hour or so of uncontrollable tears flowing down my face have I decided to finally taking that first step.

To summarise where I am right now in my life; I'm a 28 year old female who has not been working for over 6 months. I quit my job to help my father who has been diagnosed with Dementia (I am his only child and my mother and her side of the family has been forcefully estranged due to his paranoia/delusions). He is currently 71 years old and I have fortunately been able to find a nursing home for him to stay during a respite period, with certain permanency when the time comes. He had been living alone in a 2 storey home, with a huge front and back garden (pool included) that had not been maintained for at least a year... Since he kicked my mother out of the house. He's also always had hoarding tendencies/"finds order in disorder". Being alone, he forgot/couldn't be bothered to cook, clean the house, garden, wash himself/his clothes. He knows how to drink, though... And that he does. He also has Diabetes and has had open heart surgery.

It has been a slow process and has felt like there would be no resolve in sight for a long time. I did not realise that the tests and Geriatric specialist appointments would need to be spread out so far apart... All the while, I see my father deteriorating before my eyes. I was very fortunate to be able to get him into the closest nursing home to his house and within a week of meeting the coordinator.

I felt like things were looking up...

But... Over the weekend, somebody who I considered my oldest friend basically said that she is tired of being my "counsellor" and that I can't use what's been going on in my life as an excuse to reserve myself until I need somebody to talk to. I thought that's what friends were for?

My partner is not Australian born and is my only support through all of this... But lately, he has pulled away from me as well. It could be something that is lost in translation... or, he has previously stated that he feels like being my partner is more of a job than anything.

All I feel these days is that I'm drowning in a pool and the people who I thought would lend out their hand to help me out are pushing my head under.

Any responses are welcome. Thank you.

[croquemadame]

Short update: Since reading some of the latest posts and taking the time to respond and help in any way I could, I actually have drawn my negative focus out and feel slightly settled down.

I do have plans to visit my father today and I'm terrified of leaving the house and breaking down in public and especially with him. I don't want him to feel like something is wrong with me. I know that my strength gives him strength. It always has...

I'm finding it hard to get it together.

[quirkywords]

Welcome croquemadame to the forum,
I am so glad you have introduced yourself and stopped lurking.
This is a safe, friendly, nonjudgmental and friendly place.

You are doing a very difficult job that unless you have ben through it yourself it can be hard to understand.

Your friend is confused and does not see how overwhelming looking after your dad can be.

Over 27 years my mum had dementia but this was at a time when there was not much information and people told me I was imagining it all. The family was in denial. My dad was the main carer but I would come up for all school holidays and every 2nd or 3rd weekend. I know that is nothing compared to what you do but when I was there my dad would go and take my children .

When I was alone with my mum I would drink and I was not a drinker. My mum would scream at me and forget that my dad had gone to a friends place with my children.

It is so hard when the people who you thought were there for you have let you down.

Have you contacted the Carers Association as they can help support. and they understand what you are coping with?

I know you said your mum as been forcefully estranged but can you contact her for support?

You are doing a wonderful yet thankless job at times.

There will be many people here who will relate to you.

You will be exhausted and some people cant understand that.

There are people who can offer you a lifeline .

Thanks again for sharing your story. I am here crying as I can feel your pain and frustration.

Quirky

[quirkywords]

Croque

WE must have been writing at the same time. I have just read your update.

I am glad responding to others helped you a little. I am sure the people you replied to were helped by you.

You are so strong.

You care so much for your dad.

If you do start to feel teary in front of your dad, excuse yourself to the bathroom.

Hope it goes well.

Quirky

My mother would make me cry then 5 mins later ask why I was crying.

[croquemadame]

Thank you for responding, quirkywords. You don't even realise how much that means to me at a time like this.

The times I speak to my mother about him, she is genuinely concerned for his well-being. It's always the first words that come out of her mouth when I see her. "How is he? Is he eating? What did he do today?" etc. which shows her lack of resentment, even despite everything he has said and done (he reported her to the police for theft, shortly followed by kicking her out of the house... the things he claimed she stole "just appeared" again not too long afterwards).

An issue that I've always had with the relationship with my mother is that English is not her first language. It is something that has not greatly improved in the decades she's been in Australia. I don't resent her for it, but our bond is just simply not as close as it could potentially be. We both can't express ourselves in full, which hurts our relationship... and possibly the relationship she had with my father as well. Another struggle I've been having is that friends and family of ours are all reaching out to me for answers (some even almost commanding me to take care of it all, without knowing everything I have done so far). It's been utterly exhausting not being able to take a moment for myself... Also, not having anybody ask me how I am. I don't mean to make it about me, I honestly hate having any sort of focus on myself! I'm chronically passive aggressive... and it's detrimental to my mental health, I absolutely know this, yet I keep doing it.

What you said is bang on. A thankless job. I've been trying to build a thicker skin, but something just shaves it all back again. When I convinced my father that moving into the home was the best thing for him, he seemed to be okay. I thought that would be the most difficult part, to be honest.

The first week came and hit me like a tonne of bricks. I copped all the hate, blame and aggression... Especially when I visited him on my own. All the while, I was trying to convince my penny-pinching father that all the money he had made throughout his life doesn't need to be saved anymore. It needs to be spent on himself to live a happier and fuller life. I can't tell him enough that I'm not helping him to see a payout at the end, I'm helping him so he can be around as long as he can. So he can see me become a real woman. A wife and a mother... I used to resent my parents for having me at an older age. Now I'm just trying my best to keep him around.

[quirkywords]

Croquemadame

My parents had me at an older age but now it is not considered that old.

I think wanting people to ask how you are is not passive aggressive, as you just want to be acknowledged. When you are with some one with dementia who is constantly argumentative or aggressive or rude. Even though I knew it was the illness and not my mum it still hurt.

Have you spoken to the Carers group or spoken to another Carer?

Thanks for your kind words.

Let us know how the visit went if you feel up to it.

Quirky

[croquemadame]

Hi!

I come back today in better spirits. 🙂

My visit to my father was actually the best part of my day yesterday. I can't remember the last time I may have said that, which is sad, but true. There had been a bit going on since he's been in respite for the last 2 weeks. Some things, to name a few:

• We have a horrible, evil side of the family in Europe who has been fighting my father for his assets for the last decade and it's still ongoing.
• One of dad's best friends passed away last week.
• He found most of his freedom in driving and I've had to be the constant reminder that he won't be able to do it again. The thing he mostly resents me for in being in the nursing home is his lack of freedom. I understand it... But, it's honestly for his own safety. He just doesn't realise how severe the Dementia is. I'm not actually sure he understands what it is, to be honest.

But, in saying this, I went to visit him yesterday with things that he needed for his room; brought him things that he didn't even request. I knew it would make his every day life easier. The day just flowed nicely after I showed him the items I brought with me. We chatted very calmly about his friend who had passed. My dad made the effort every week or so to drive 2 hours up to coast to see his dying friend (something he shouldn't have been doing, but luckily enough he managed it). I always made him call me when he had arrived there. I'm glad that dad didn't have any feelings of regret. He did what he could.

Dad used to pretty computer savvy, but these days, he can't remember how to move the mouse around, let alone anything else. He constantly asks to be taught how to use the PC and normally I get slightly frustrated... but yesterday, I was cool, calm and collected. I set up bookmarks of news websites and things that he's interested in. We even took a trip around Italy through Google Earth together. It was nice. 🙂

Afterwards, he took me to his balcony. There was a beautiful smear of pink, red and blue throughout the sky as the sun was setting. We watched it together and then he asked if I could bring him some binoculars so he could see further (I went to his house and picked them up afterwards).

Before leaving, I set up a DVD for him to watch about Formula 1 (he loves racing) and he walked me to the front door.

It was just a nice day...

I'm having lunch with him tomorrow and I'm really looking forward to it.

Thank you for your advice, quirkywords! I will look into the Carers Association soon, too.

[quirkywords]

Croque,

Thanks for your detailed update. You are very kind to your father and you are also understanding of how he feels.

I am glad you had a good day and a good visit and you are looking forward to seeing him tomorrow.

Does your dad remember you?

It is encouraging you can see the positive side of a very difficult situation.

You are very thoughtful.

When does your dad come back home?

Your dad is only 12 years older than me . I suppose none of us knows what happens in the future. I am not sure my children would be as thoughtful as you.

Quirky

[Doolhof]

Hi Croque,

I too welcome you to the community here. Hopefully you are feeling more comfortable with communicating on the forum. It is wonderful you and Quirky have been conversing with each other.

Half of my working life has been caring for the elderly in Aged Care and also in their own homes. I soon realised some people were very happy to finally be in a situation where so much was taken care of for them, others would fight it and be resentful.

These days I believe the residents have a far greater say in how their care is to happen. You mentioned your Dad used to enjoy driving, are there opportunities for bus trips in your area? Some places organise all kinds of activities or are able to organise events and outings for people.

Even being a care worker, we would often be abused by people suffering from dementia, mental health issues, or any kind of ailment. The thing for me was to remember and realise that person was suffering one way or another, I just happened to be there. Maybe your Dad is a little like that. He doesn't mean to be nasty at times.

I'm not sure what agencies or facilities are available to help you along this journey. Have the people at the home offered you help and advice?

Regarding how to use the computer, could you print him up easy to understand instructions. Maybe asked one of the care givers or a volunteer if they might have the time to help him. I believe most residencies have a "Life Style" co-ordinator...or what ever they call them now.

(All volunteers should be screened and checked) A place I recently volunteered at, had hundreds of volunteers helping the elderly. That might be an option for you and your Dad.

Aged Care can be a tricky and confusing road to travel, hope you find some support for yourself as well, here and in the "Real World".

Cheers from Dools

[croquemadame]

quirkywords,

When I came to collect my dad, he was sat down at the dining tables (always with the same 2 men now) in a prayer before lunch. I told dad I would be taking him out to lunch, but I didn't stress out about it like I usually would have. I walked over to the table and asked him if he remembered we were going out, he almost seemed embarrassed and replied "yes..." very quietly and almost didn't want to get out of his seat. After a slight deliberation, because he loves being fed and getting things "for free", he got up. He was non-stop apologetic to the other 2 gentlemen sitting at the table (they didn't seem to mind at all - haha) and dragged his feet out of the building with me.

I had a little chuckle to myself about it. I was so relieved to see him in a healthy routine, one which I had messed up by coming around! It made all the harshness he had towards me kind of... melt away. Yes, he still has his moments (like upon our return to the home). He mentioned that he's bored - I know that boredom can lead to depression, which is something he has had before... But, at this point, I'd rather that he be bored than hungry, unwashed, living in disarray , stressed, angry and lonely. Also, dad will always complain about something as long as he has a breath in his body. Always has, always will.

Yes, dad remembers me. It's not at that point yet at all. He does tend to ask me if I know this person, or that person, or this time he took me somewhere.. The people who I "knew" or met when I was 5 years old or even younger and places we visited when I was also around that age! He just can't fathom that I don't remember things due to my age when they occurred.

I was originally opting to have stay at home care provided for him, but it just didn't seem reasonable financially and also for his own safety. The house he lived in (that I grew up in) has a lot of bad energy and memories attached to it. Dad was never the type to upkeep the house and it's currently an unsafe place for anybody to live in. Not just the sheer amount of things that have accumulated, but the dirt, dust, even the structure of the home needs evaluating. Also, amongst his paranoia and alcoholism, there are knives and bottles hidden/stashed all over the house. I will be completing the application form for permanency in his current location.

He may not have been awfully kind to me growing up, but he's the only father I've got. I'm sure your family will be there to support you as well... No matter what.