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affected

Guru status reached
Joined
Apr 26, 2013
Messages
16,096
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I just need to rant a teeny bit. Feel free to give up reading it all if I go on too long, sometimes just typing it out helps.

My brother has had multiple health issues (including mental health ones) for a long time. He has lived alone, almost as a hermit for many years in a gov. supplied unit in Byron Bay.

Early this year he began to experience rapid eyesight loss and they discovered a huge mass inside his head. I had to get emergency respite here and race him up to the neurosurgery department of a large hospital where he was admitted. They found that he had a huge carotid artery aneurism that was pressing on his optic nerve and pituitary gland.

Anyway, they had him there a month, did surgery to put coils inside the aneurism and stents in the artery, and we had to work out what to do to help him because he couldn’t just be sent home alone.

So he came here. Chris supported that we would bring him here, he thought it might be nice company. Well yeah, Chris with FTD just kept telling me how unsafe my brother Paul is, and why did I let him do unsafe things – he could fall and break a bone! Anyone who remembers my story with Chris may remember his awful falls and injuries and refusal to use equipment and be safe. He would tell me to put his neck brace on Paul, and to make him use his walking frame etc. Oh there were some hilarious sides to it, and it took a lot some days for me not to just become hysterical at the absurdity of it all.

I just can’t describe what it was like – one neurological person who can’t move or speak and requires lots of equipment, and one neurological person who can move about freely but can’t see and has mental health issues ... well it became a disaster. He was up and down all night, waking Chris and disturbing everything and I had to end up putting him into a respite bed so we could try and get something sorted.

He would refuse to cooperate whenever services attempted to assess him, then tell me how little he could do for himself. Then decided to go home. He managed for a few days, then just took to his bed, and I had to end up calling the police in to see if he was alive. By now Chris had been in hospital with the aspiration pneumonia and was in his last 2 weeks of life so I couldn’t just race off and drive over an hour to his place to do anything at all. The police got him to open the door finally, as they were about to break in, and called an ambulance and got him to the local hospital. He stayed there for 2 months and again would not cooperate well with services assessing him to help him and was assessed finally as able to go home again with help.

This time it last nearly 6 weeks, but he was mostly saying he was doing OK.

Here is where Tillie is a bit dumb, because she just likes to be kind and to help. So I had organised to take him out for the day (3 weeks ago) to run errands and get some things he wanted, then bring him here for a day for a nice visit. When it came time to go home he went to pieces and said he can’t cope and could not face going home. I truly did not know what to do. How does one dump a blind man at his home and say sorry but bye? Well I just couldn’t, but I was nearly in a panic. I just could not see how I could possibly be in a carer situation again, not even for a few days, and I kept getting flashbacks, not of things I did for Chris, but of the feelings of being totally on hold as someone else had bigger needs.

Anyway, this rant is long but I’m trying to keep it a little short. I was able, by totally falling apart on the phone and refusing to be able to do anything for him, to get him assessed within 24 hours (nearly unheard of) for permanent placement in a facility, and they assessed him as eligible immediately. We were able to get a 4 week respite bed available, and then the very day (Monday last week) that he was going in there I got a call saying actually another facility had a permanent bed just become available! I couldn’t believe that he actually agreed, as he doesn’t do well with sudden decisions and changes of plan.

He has been very up and down, but today I was able to get some help and we cleared out his unit entirely. Every single thing is gone and somehow managed in one day between packing up, Salvation Army arriving to take some goods, upstairs neighbour pouring over everything and taking heaps of stuff, then some stuff out here to my place and the rest then in to him to make his room much more homely with some of his own furniture.

Please now may I have a break, please? I can’t believe that in 3 short months I have lost my husband and put my brother into a nursing home, and both were only in their 50’s.

I’m one tired, wrung out Tillie.
 
I am rarely without words. But at this time, all I can do is remind myself to breathe. I am so glad you have moved through and now (hopefully) past the storm. My best hopes and thoughts go with you...

Jim
 
My God! Very very hard to not think "what the hell did I do to deserve all this?" Eh? You are an inspiration as usual. Along with ALS, my parents are in they're 70s, my mom is a shut in who refuses to shower, my dad had lung cancer but doing well, and my brother has bladder cancer but doing well. Believe me when I say I truly understand! **Insert hysterical laughter here!**
 
Tillie, you are an amazing person...so compassionate and giving. You astound me with your fortitude and grace. YOu deserve a rant or two or three.

You should take a much deserved week or two away....somewhere that you are pampered. A spa or retreat where you are waited on hand and foot.

You have support here and you are loved.
 
>You should take a much deserved week or two away....somewhere that you are pampered. A spa or retreat where you are waited on hand and foot.

Ditto that!
 
I'm sorry Tillie:

You definitely need some things to go right for you for a change. Thinking of you.

Neil
 
Wow Tillie. You've done so much. Your karma 'credit' must be in the millions.

Could you afford a nice cruise? Lotsa food, lotsa attention...lotas relaxation?
 
Definitely splurge on wonderful, selfish, experience for yourself! You have earned it many times over. Do it and enjoy!
 
Tillie,

I am SO GLAD YOU DID NOT TAKE ON YOUR BROTHER'S CARE! I can not say that strongly or firmly enough. you do not need to take that on, no matter how needy he is. NONONONONNONONO

You have done more than your share with dear Chris, and now is time to take care of Miss Tillie.

I have found you a destination spa for you to visit to recharge and relax. I just wish I could send you the money! LOL.

Gaia Retreat & Spa | Gaia Retreat and Spa, Byron Bay Hinterland Accommodation and Day Spa Australia


I have found one for me too, in Mexico just over the border. I have put it on my list for "after".
 
thanks a million times everyone

Barbie I've always wanted to go to Olivia's spa - you all remember Olivia Newton John, singer from the 70's? She lives up here and owns that one :)

Actually I AM going for a 2 week vacation! Next week in fact.

Not quite what was being suggested here maybe - I'm going up to Darwin with a couple of friends. So it will be fishing, watching out for crocodiles, lots of heat and whatever else outback aussies do. If anyone has seen crocodile dundee, well it could be something like that up there I believe lol I've never been to the real outback parts of Australia as an adult, so I'm really looking forward to it.

I will probably need a holiday when I get back though as going away with other can be exhausting too!

I think that life just goes along with it's twists and turns and sudden dives and we do our best. If anyone had told me in advance I would have to face the last 2 years I've had, I would have said I couldn't possibly do it. But every single person here is amazing and facing more than anyone should and with their own brand of grace that astounds me daily.

@Barbie - yeah I was so freaking out inside when he was here and fell apart because I knew I couldn't do it, I just had to figure how to get him safely out of my house fast. It was the first time since Chris flew free that I realised just how fragile I still am. I know that on that evening after he said he couldn't go home, I cried the entire way through cooking us some dinner (he sat in the lounge and as he can't see I could hide it), and I was text messaging some very serious swear words to a friend to let off the tension lol

@Greg, I've actually always wanted to do a cruise, I should keep that as a serious consideration!

@tinyandme I could tell some really hysterical stories about those 2.5 weeks I had both Paul and Chris here. No matter how hard it was, there were some really black humour funny sides to it all. You do understand, with the multiple health issues in your family, sometimes it feels like we are maybe insane ;)

@Jim please do breathe! ;)

@Vicki, Neil, Kay and Max {{{hugs}}}

I feel so much better this morning, slept for 9 hours and a gorgeous sunrise with mist rising from the valley.

Ya know, despite all that stuff, I never look at my life like 'why me', or 'poor me', I actually think I'm an incredibly fortunate person. I've had amazing experiences and done and am doing so many things I wanted, and enjoy so much.
 
> I'm going up to Darwin with a couple of friends.

hope you are planning on flying :)

>I've actually always wanted to do a cruise, I should keep that as a serious consideration!

Sandy and I are planning a cruise out of Sydney when we come to visit in October. We also hope to visit some friends in Melbourne and maybe stop by to say hi up at your place :)


>a gorgeous sunrise with mist rising from the valley.


We really miss our mountains (and hate Houston :))
 

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Tillie: You and the other Cals are such a inspiration to me. I am not my dad's caregivers but I am on here for support in coping with my dad having such a horrendous disease. I also get tips on here about different things and pass it on to him or to my brother and sister who live near him. I use the forum to talk about my fear in my occasional blogs about losing him. He's not exactly young since he will be 80 in September.
I sometimes read the posts and it gives me a wakeup call and I pick myself up from my own pity party over trivial things that are nothing in comparison to what you are all have went through or are going through. Your posts make me want to be a better person myself. Your posts make me want to have strength to fight what ever life throws at me. Your posts on days when I am in my depression mode to snap out of it and realize that life is a gift and though there can be tremendous struggles it is worth the ride. You have even shared little jokes back and forth that have cheered me up on days when I am overwhelmed with sadness in missing my dad. Even though I really probally never meet most of you in person you have been my friends. Thank you all for that. Kim
 
>I sometimes read the posts and it gives me a wakeup call and I pick myself up from my own pity party over trivial things that are nothing in comparison to what you are all have went through or are going through.

there is always someone that is worse off and than I am ...

>Thank you all for that. Kim

:)
 
@Max I can assure you we ain't gunna be walking up there :shock:

I've got house sitters arriving Tuesday to spend a day here with me, and they will look after the dogs. They've already been here and are lovely people and I am sure the dogs will be fine with them. Then I will head down to Ballina on Wednesday and we all stay there so we get up on Thursday morning ready to take off to the airport. Gosh I better start packing!

@Kim, that is the beauty of this place isn't it? We all have different parts in this, but we all can lend support to each other and remind each other of what is important in life, as well as give great tips on how to cope with the day-to-day of ALS. I often find that I feel that others are dealing with more than me!

Everyone here are family to me, even if we never meet.

Hang on, no Max had better find a way to meet up with me when he comes to Australia, get your priorities in order mate!
 
>Hang on, no Max had better find a way to meet up with me when he comes to Australia, get your priorities in order mate!

hoping for slower progression!
 
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