Stage 7

[jc141265]

I think perhaps we run out of words for how things are going once our loved one reaches stage 7, the following is a copy of what I sent a friend when she asked how Dad was these days. I thought I'd post it because although we tend to become silent around this stage, this is more due to the lack of extreme behaviours in our loved ones and the ever slimming hopes that this is not going to happen, not because its any less traumatic, its just a different kind of trauma:

Haven't talked much about Dad because although no longer obviously ill he appears to have slipped away further...., i keep hoping he's just having a bad day or two. he's hardly trying to talk to me at all, very long quiet visits. his chest sounds better though, I think he's just sitting there thinking how much this all sucks, poor man, and so can't be bothered with chit-chat (not that he ever talks properly just mumbles that aren't words, i miss the mumbles). So I sit there each hour wondering how long this is going to go on, don't want him to die, but don't want to do this forever, wonder how bad it will get, wonder how long he will languish through the bad bits, just sit there not even angry about not being able to do anything anymore, I can't muster the anger anymore, I just sit there at a loss. Dad when he did talk used to say 'bloody, bloody, bloody' quite a lot, and thats exactly how I feel, bloody, bloody, bloody. But don't worry I'm not as sad as I sound I should be. Guess I've gone numb like I said in that War Zone post, just waiting....

Posted it here in the younger dementia section in honour of Dad's amazing odds at getting it at such a young age. You know I really would have liked a Dad I could talk to now that I am a grown up. Its worse than him having died before I reached this age because he's there but he's not, he's so close but so far away. I would have liked to have seen his pride at my graduation instead I will know he is sitting staring into space at the home oblivious. I would have loved for him to walk me down the aisle, instead I have to go away to get married because I couldn't bear the rest of my family being there and not him. I would have loved to have him tell me that he approved of the man I am going to marry, instead I see him smile at him and hope that means he likes my hubby to be, but also know that perhaps he is just smiling because he tends to do that to people who walk up to him smiling. Having put off my wedding so long because of Dad's condition, I am now also starting to have second thoughts about having children (other than my step child). I don't know if I want to give so much of myself again to another human who would also be dependent on me. I know I would also find it easier if I did get this dementia and I didn't have to worry about how my children will cope with it. I also think that when Dad is eventually gone, I don't want to find myself restricted by the needs of a child, I want to be able to travel abroad when I want to, I want to enjoy just time with me and my hubby with no other distractions. I want to focus just on me for a while. If Dad hangs around for another 5 years or so, I'll be 35 before I get this chance and my hubby will be 47, he'll be at least 50 by the time I'm possibly ready for kids. Oh how this disease changes the path our lives were going to take.

 

[Brucie]

Hi Nat

couple of points

First another spooky one!

Dad when he did talk used to say 'bloody, bloody, bloody'

Latterly, so did Jan!

Isn't it strange how, half a world away, someone even uses the same words when in this condition?

I don't want to find myself restricted by the needs of a child, I want to be able to travel abroad when I want to, I want to enjoy just time with me and my hubby with no other distractions. I want to focus just on me for a while. If Dad hangs around for another 5 years or so, I'll be 35 before I get this chance and my hubby will be 47, he'll be at least 50 by the time I'm possibly ready for kids. Oh how this disease changes the path our lives were going to take.

I'm a huge believer these days in fate. So don't try and best guess things in your life. Sure, you have to try and get some control, but there are certain things, certain times, where you just have to feel it is 'right' to do something. Generally, fate will tell you whether it is right, or not.

....and I realise just how unhelpful that last para is....sorry...

 

[Norman]

Bruce and Nat
I believe that we can only try to make tentative plans for our lives.
Our sons were not planned,the second one came ten years after the first,what a shock,but where would we be without him?
Was that a kind act of fate?
My philsophy has always been day to day,each day go through life enjoying what you can from each day.
Along the way if you can help someone do it.
My experience is if you plan your life in detail,you think you have the future well sorted,fate will give you smack in the teeth and spoil it all.
Isn't this what's happened to many of us on the site?
Norman

 

[jc141265]

A-ha but you see I do plan my life, but not in a rigid way that stops me from rolling with the blows like this Dad situation. I take life day by day, but I am also as prepared as I can be for each day when it comes. I planned my life by doing my B.Ed, because I knew that would open doors for me in this world, I lived in Japan for a year and a half to open more doors, I am now about to complete my B.Com and B. Bus again to open doors, and it is already doing so...I don't like to be trapped in one place if I can help it and I know many will protest and say children will open new doors, but they aren't the doors I want to be opening and they will close quite a few! If fate deals me a child anyway then I will change tack and not resent it, but as a human I have a certain amount of choice in my life and I don't take this gift lightly.

And so I sit here planning rightly or wrongly, I think this is a case of each to his own, but for me I could not stand to get to the end of my life and think, sheesh look at all the things I never got around to, if only I had forward planned a bit....Dad's illness has made me more determined not to waste time. For others the enjoyment in life is the seeing what happens next, its not what makes me tick, I need constant stimulation. Perhaps this is why Dad's situation hasn't completely floored me, I rise well to challenges. Not to say that this one hasn't been unbelievably hard. I know no doubt I am a control freak, but I am a control freak who understands that you cannot control everything, I just suffer from the doldrums unless I can stand back and look at a situation and think well you did everything in your power to make this work. I am mega harsh on myself if I get into a situation that could have been avoided with a little pre-thought. Many would say that this is the wrong way to live but I don't want to fix my illness it makes me different, it brings no harm to others becausemy other big personal moral is not to look after myself to the detriment of others,and it allows me to be capable of doing things that others don't have the strength for.

By the way at this point I feel it is right not to have children, I don't think I am capable of such a sacrifice again especially if it is of my own choosing (if fate steps in, as I said above then I will change tac). Remember I also have a lot of issues with my mother which I don't want to repeat with my own children. At this point, needing some time for myself would mean I would repeat those mistakes.

Brucie, oh to hear the bloody,bloody, bloodies again.

 

[Brucie]

Hi Norman

to bend the old saying....

Man proposes, Fate disposes

I guess I should also add a new corollary, in the light of my own experience:

Man disposes, Fate proposes

that is, we can get to the state of being ready to give up on verything... then Fate steps in and suddenly, there is a way forward...

Hi Nat

Brucie, oh to hear the bloody,bloody, bloodies again.

ah, yes.

That later changed to counting, and Jan would count "1, 2, 3, 4, 5, 6 ,7 ... up to 10". Over time, she reduced to 1 up to 3. Now I can sometimes get a response if I count to four, though Jan can no longer do anything herself.

Nina came with me yesterday on my visit. She remarked afterwards that Jan is worse than on her last visit a couple of weeks ago. Funny how one adjusts and it doesn't seem to register. On reflection, she is correct.

The 95 year old lady resident who wanders the place harranguing people told me I was a "two-faced old ******". I told her - not for the first time - that I don't mind being called "two-faced". I don't even mind being called a "******", but that I considered it a bit rich to be called "old" by a 95 year old...

 

[Lynne]

Oh Nat,

{{{Hug}}}, {{{Hug}}}, {{{Hug}}}, {{{Hug}}},

Don't know what else to say to you mate, I am SO sorry.