The Next Step?

[daughter]

It was nearly a year ago when I first wrote on TP, about my Dad's visit to hospital for an assessment after he became aggressive. It seems that he has now hit another spell of aggression, although not enough for him to be hospitalised (but that thought is always at the back of our minds). Dad will be getting different medication which will hopefully help.

Mum has been told, in a loving but forceful manner, by the Head Nurse at Dad's Home, not to go in and visit everyday from now on. She told Mum that she should go and make another life for herself, find a new interest etc. It may seem harsh, and who knows if it's even possible for Mum after all these years with Dad, but I believe it was necessary because she is wearing herself out with the strain. Mum is now going in every other day and we'll see how it goes. I've been doing less visiting lately too because I just can't bear to see both of my parents so low, although it has made me feel very selfish.

Dad is also becoming very incontinent and he actually accepted a pad being put on him today. No more trips out this summer (unless the pads work well). I don't know what I'm asking for here - I just wanted to write it down because it helps me to come to terms with the progression and to face it right between the eyes.

I don't want my Dad ending up in bed, motionless and wasting away, but then I didn't want the other things to happen and they have, and what do I feel? After a couple of months of feeling really low, I have to be honest and say that I now feel sort of resigned to this stage of my Dad's illness and whatever it may bring. Well, that's the theory anyway.

 

[Margarita]

I do not know what to say as I am not in that situation myself just yet, & I do understand writing it down is therapeutic also I do hope you fine theirs quote helpful

 

[Norman]

Hi Hazel
Life is a bummer.
Just when you think you have your life in order and everything is alright you get a smack in the teeth.
It can't happen to me but it does,so we soldier on and do our best.
We fall in black holes and we climb out and carry on again.
Keep strong Hazel thinking of you
Norman

 

[connie]

Dear Hazel, so sorry that dad, mum and yourself have reached yet another stage.
It must be so hard for you, to try to support both mum and dad. Stay strong sweetheart, and am sending you a big hhhhhhuuuggggggg. Love Connie

 

[Lulu]

Dear Hazel, From the relatively short time we have been dealing with this illness, I am learning that each day with Mum something changes. You realise that it's another slight worsening of the condition, and each time there seems to be a black hole waiting to swallow you up as you start to try and adjust to it once again. We are not as far down the line as you are, but I can feel some of your pain. I'm so frightened of saying the wrong thing, but I am genuinely thinking of you as you go through this. You have been such a support to others, and it hasn't been the same without you of late. It's like a member of your own family being a bit down, and you can't be fully right again until you know they're OK. If I could draw Connie's cartoon, the one with the long arms, I'd triple the length of those arms and envelope you in them, head to toe - but I don't know how to do it. With love.

 

[Amy]

Hiya Hazel,

I am fortunate that the aggression mum experienced was only short lived (though it didn't feel it at the time) and on the whole we have been dealing with an amenable lady. It must have been very difficult for your mum to have been told

that she should go and make another life for herself, find a new interest etc

as though your dad is a hobby. I can see the good intentions, but maybe it wasn't the best way to put it.

Sometimes we have to be selfish to ensure that we survive ourselves. I know that there are times when I don't answer the telephone, or I get the kids to say that I am in the bath; we have to keep ourselves strong enough to be able to continue loving and supporting our parents.

I also think that when we have faced something

right between the eyes

we may then have to look away to give our brains and hearts time to take in what they have seen.

I too am working on acceptance. (Bruce had some stuff to say on the thread "Dodgy Hand") I too say of mum.

I don't want my Dad ending up in bed, motionless and wasting away

but we cannot alter what is going to happen. All we can do is continue to love, continue to be there, and know that it is going to hurt us, but loving does.

Thinking of you Hazel. Take care
Amy

 

[connie]

By special request

Hazel, cannot make the arms longer, but this one comes with love from lots of us on TP. Connie

 

[janjan]

Dear Hazel

About 6 months ago i felt the same way about my father. It hit me just like you.I had been running around trying to look after both mom and dad,plus work and my family. Then it hit me right between the eyes. Looking back i think it was a case of ajusting to how ill my father is, or l might have become ill myself. But what i'm trying to say is i think it was a stop valve for me to be able to carry on but ajusting with out going under with it. My thoughts are with you at this time.

Best wishes to you. Janet

 

[daughter]

Thank you all so much for the quote, kind words, good wishes and big l o n g hugs - every post has helped so much. I have not been writing much lately but sometimes just reading TP is such a comfort.

It's strange really, because I thought I had got to the stage of accepting it all and had it all worked out, outings for Dad, keeping Mum happy, making the best of the situation, I felt able to give out positive advice to everyone about how to cope with it all and then - zap - another black hole appeared.

Thanks everyone for helping me with the climb back out again.

 

[Margarita]

Hi daughter

I know I have been only a short time on this & its lovely shareing as you sum it all up when you say

It's strange really, because I thought I had got to the stage of accepting it all and had it all worked out, zap - another black hole appeared.

Thats why I say

 

[Sandy]

Hi Hazel,

I read your post and, to be honest, had to think about it for a bit before replying. At the moment I think I feel in a slightly similar space - watching the current status quo (which would have seemed very strange just a year ago) change, waiting, anticipating, formulating potential plans.

It seems to me that one of the core problems is the constant dynamic tension between looking for ways to 'make things better' and realising that, in the long term, the overall course of this illness is out of our hands.

I think the 'making things better' instinct is very strong in all of us and it can produce really good results in terms of quality of life. At any stage in this illness, there are opportunites to make sure that someone has the best treatment and most appropriate support possible. Even if we feel that our efforts in those areas don't produce the desired results, we know, and at some level hopefully our loved ones know, that we are still trying, that we are 'still with them'.

And yet there can be a strange sort of relief in recognising that many aspects of long term outlook are ultimately beyond our control, as are many aspects of all of our lives, touched by AD or not.

Take care,

Sandy

 

[daughter]

Thanks again Margarita, we can never have too many friends!

Hi Sandy, Thank you for your post. It meant a lot to me because you've been a TP friend right from the start of my postings. It is strange to realise the difference a year makes but I really do feel I am emerging from some kind of war of adjustment.

I have been in this place before at other times in my life too, so I fully understand when you talk of the 'relief' of accepting that some things are out of our control.

Then, when I hit that plateau, (or is it 'that nadir'), I started to find other ways to try to make things better, so I guess this is how it will be with Mum and Dad... and so it goes on!

Best wishes to you and here's to another year - whatever it brings,

 

[jc141265]

Hazel,

All I can say is, I know, I know the feeling. Its almost a nothing feeling, the resignation, well thats how it feels compared to the raging and the hurting. I don't know if you remember a verse I put on here a while back about this all being like being in a warzone, but I think from your words what your going through at the moment is the stage where, you've been so deafened by all the bombs and explosions, that your kind of numb just now. (Then again could be completely wrong, you and I have so much trouble speaking a different language I could be barking up the wrong tree...but when I read your words in your initial post, thats what they sounded like to me)

Anyway point of my rambling is simply to say, I'm here if you need a shoulder, or you just want to explore this feeling of blankness with someone who understands how bizarre it feels. Its also a bit scarey because you wonder when the pain is going to start again and whether you will be able to still with it when it comes again the next time, because you know it has to come back sometime.

Well thats all I will say, am terrified I have read your post wrong but figured i wasn't being offensive so it was worth risking a guess.

Lots of love,

Nat

P.S. I wish I could take away all the bad stuff for you and your family.

 

[daughter]

Hi Nat and thanks for posting and for the guess - you're absolutely spot on. I feel shattered; numb; resigned, but strangely relieved (as Sandy pointed out), adjusting without going under (as Janet said) and almost enjoying being a bit selfish to ensure that I survive (as Amy described). It's like I've told myself, "hold on, step back, take a breath, you can only do what you can do". It's like I'm sad yet happy, although that sounds too simplistic, it's much more confusing than that.

I could really relate to your:

"Well its not really that I don't want to visit Dad, its that I don't want to feel the pain, deal with the pain that visits bring because they make the denial of his existence in this horrible state impossible."

Now I suppose I'm re-grouping ready to soldier on which, as you say, is the scarey bit. Then again, aren't we are doing all this, on a small scale, every day, whenever we think about or visit our Dads?

Thanks again, Nat, I believe it's a very similar tree that we're barking up and perhaps our barks are much worse than our bites!

 

[daughter]

I'm feeling a bit of a fraud today.

The visit to Dad today was a good one. He was playing table tennis really well again, singing some songs and tapping his feet to the music. Dad (and even Mum) seems to have accepted the shift to him using pads better than I did.

I can feel Mum's relief at the change of routine for herself, obviously she would still prefer it was otherwise, but she enjoyed an outing yesterday, and has even agreed to a few days holiday in May. She keeps telling everyone "If he knew who I was I'd visit him every day until kingdom come".

And me? I'm lulled into that false sense of security that it's all going to be ok again now. Gosh I'm like a cracked record. Perhaps I'll just re-read this thread again in a few months/weeks when/if there's another new stage/situation!

 

[Lulu]

You're not a fraud. So happy you had a good day - love from lulu

 

[Lynne]

Hazel

Of course you're not a fraud - we all need Up days (or even just on-the-level days) to help us through the low ones. I hope your Dad can continue to show his prowess in table tennis and singing for a long time to come, & that the relief that your Mum & you feel will help you both.
Best wishes