topic Been lurking for answers; first time poster. in Welcome and orientation

Been lurking for answers; first time poster.

croquemadame — Wed, 29 Nov 2017 00:20:32 GMT

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.

Been lurking for answers; first time poster.

croquemadame — Wed, 29 Nov 2017 01:06:15 GMT

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.

Been lurking for answers; first time poster.

quirkywords — Wed, 29 Nov 2017 01:13:27 GMT

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

Been lurking for answers; first time poster.

quirkywords — Wed, 29 Nov 2017 02:01:19 GMT

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.

Been lurking for answers; first time poster.

croquemadame — Wed, 29 Nov 2017 02:12:41 GMT

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.

Been lurking for answers; first time poster.

quirkywords — Wed, 29 Nov 2017 02:41:59 GMT

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

Been lurking for answers; first time poster.

croquemadame — Wed, 29 Nov 2017 23:05:11 GMT

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.

Been lurking for answers; first time poster.

quirkywords — Thu, 30 Nov 2017 07:01:05 GMT

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

Been lurking for answers; first time poster.

Doolhof — Thu, 30 Nov 2017 07:23:14 GMT

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

Been lurking for answers; first time poster.

croquemadame — Fri, 01 Dec 2017 23:39:52 GMT

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.

Been lurking for answers; first time poster.

croquemadame — Sat, 02 Dec 2017 00:03:35 GMT

Hi Dools,

Thank you for responding!

Actually, I failed to previously mention that not only was I able to obtain a large room with a balcony for dad at the closest possible aged care facility, but also that my mother has worked there for 15 years (in the kitchen) and my sister-in-law has worked there for about 3 years (outings organiser). It's just a dream come true for dad to be there.

My mother and father are extremely hot and cold to each other, loving one second and arguing another. They were separated but living under the same roof for 22 years (until dad kicked her out a year ago). Since mum discovered that dad may be a resident in her workplace, she has decided to throw in the towel and finally retire at almost 69 years of age. She doesn't want her presence to negatively affect his stay.

The absolute positive side to this is that upon dad's arrival, he already was known to most of the staff on a personal level! Every time mum would go out for dinner with her work mates, she would drag dad out of the house and made him come too. He doesn't have many friends and finds it extremely difficult to make new ones. He's a creature of habit and has a very defined comfort zone when it comes to routine and people he knows.

With his memory loss, it was a pleasant surprise to see him recognise some of the staff there. It definitely made for a smoother transition. Also, with my sister-in-law working there, she has committed to getting him out of the room/home and involve him in as many activities as she can (provided that he actually wants to, of course!)

I am going to try and lay out some simple instructions for him, but even moving the cursor across the screen is difficult at this stage. His hand/eye coordination with the computer is not second nature to him, not like driving a car is. I was looking into getting him a large tablet so he can just touch screen everything, but I'm hesitant because he's almost stopped being able to use his smart phone (I may look into getting one of those simpler button phones for him). The phone is definitely too small for him to manoeuvre around on now.

Thank you for all your advice and I will definitely try my best to get on top of it all! I guess it's mostly been difficult because I tend to blame myself for not being there for him until it was almost too late. But, I am feeling more positive every day. I understand that he can have his bad days... I'm trying to take it with a grain of salt.

Thanks again!

Been lurking for answers; first time poster.

croquemadame — Mon, 04 Dec 2017 23:56:10 GMT

Hi,

I just wanted to say thank you for those who replied to me, not only in this thread, but the others as well.

I have found some slight stability since initially posting and will probably continue to mostly post in the "Supporting family and friends with a mental health condition (carers)" forums from now on.

Thank you again!!

Been lurking for answers; first time poster.

white knight — Tue, 05 Dec 2017 00:54:13 GMT

Hi Croque, welcome

I'm glad you have settled. The fact that we do settle is one thing we don't think about a the time when we are down. We are so depressed and sad about losing a long time friend of your dad is deteriating that we don't think it will end...but the cycle comes and goes. Try to remember that next time.

You are such a beautiful soul. Your care for your dad is touching. Grief over the loss of how he was isn't an easy think to move on from due to the fact that he is still with you. So what can you do to relieve yourself a little during this testing time.?

Writing- poetry or just write down some memories of him and you. Read them to him if that's what might help. I wrote this poem after my dad passed, to give you an idea of how I released my grief.

Dads Smile

An old porch chair where my dad once sat

A smoke in his hands and slippers on a mat

I recall how he'd laugh and smile at me

And I'd return the honour almost instantly

Sorrow fills my heart and in a way its sad

That I still look at that chair and smile at my dad

Upon that old porch chair where my dad once sat

A smoke in his hands and slippers on a mat...

It's simple but you know what? I wrote that in 1993 one year after his passing. I still read it, its hanging on my wall.

Friends- Yes, your close friends ideally should be by your side but that isn't how the world works. I too have had a friendship of 45 years and its ended. nothing was said but he stopped contact. No matter what I do. Maybe your friend has a valid point in that she cant cope with the downers you endure. I know it is your decision I'm just wondering if she cant relate to your problems.

Google

Topic: they just wont understand why?- beyondblue

If you do think she is worth contacting perhaps a coffee at a café? If you do then do you think it would be better to wait until you are stronger. In the meantime a xmas card ...what do you think?

Another thing is distraction. This one might help a lot.

Topic: distraction and variety- beyondblue

It's been refreshing to read the other replies you have and how you have embraced this forum. Peer groups like this one is almost vital in ones recovery. We are 24/7 and don't have to wait for appointments. Helping others when well enough (but no obligation) also helps ourselves.

Thankyou for listening.

Tony WK