When is the end, not really the end?

[Pigeon11]

Can anyone help? I've been using Talking Point quite a lot lately but it's occurred to me that I am posting in this section and it might not be the right place.

According to everything I've read about his symptoms, my Dad is at the severe, end stage of his dementia. I've interpreted this as being 'end of life care' , posted in what I thought was the appropriate section and have recieved lots of helpful and supportive replies to my mad ramblings, for which I'm extremely grateful, but must confess to feeling a bit of a fraud.

You see, most of the posts in this section seem to be about people who are in the last few days or weeks of their lives and my dad has been at this stage for a few years. Although deteriorating very gradually, he isn't 'actively dying' (I don't really like that term but can't think of anything else) - as far as I know, anyway.

I find it hard to cope with all the uncertainty about his illness and life-expectancy which is not helped by the fact that the NH he's in never seem to want to discuss how he's been and don't really report any changes in his condition to me (probably becuase everything's so gradual). But, I am feeling quite weary and exhausted by it all and suspect I will be on here quite a lot in future but I don't want to annoy or upset people by moaning on about my troubles when there are others so much worse off.

It may not even matter and you might think I'm worrying about nothing (I'm really good at that!) but I just thought I'd ask.

 

[FifiMo]

Hiya,

Post wherever you like. Maybe the more general one 'I care for someone with dementia' would make you feel more comfortable. A lot of us just use the Today's Posts link when wanting to browse so doesn't matter where the thread is filed away.

If something is seriously wrong, rest assured that a moderator will move the post and keep you informed.

Fiona

 

[Pigeon11]

Hi Fiona

Thanks for replying. I never considered what you said about moderators so will work on the assumption no posts have been moved so far and stay put! The comment about 'Today's Posts' was useful as well.

Perhaps I ought to just stop looking for things to worry about?

 

[lin1]

Hi Pigeon
Post where ever you feel most comfortable, quite a few members only have their threads in the Tea room, because only TP members can view that area, it's not all lighthearted stuff in there.

We also have a forum called 'dealing with difficult feelings' whose posts just like in the Tea room do not show up on search engines.

I like a lot of others click on, most recent posts or today's posts

 

[Pigeon11]

Thanks Lin, that's really helpful too. I didn't realise there were parts of the forum where only TP members can view - think I will give them a try. x

 

[sistermillicent]

I am another one who clicks on "most recent posts" so it doesn't matter to me where anyone posts anything. Don't think about whether people are in worse situations than you, if you need to post, just do it, there are days and times when we can cope with dreadful things and other days when we can't cope with a broken teacup. From your post it sounds as though you could do with support and a bit of a hug. (which I am sending through the computerwaves for you)

 

[marsaday]

Hi pigeon,

I know how you feel. You are frustrated about the uncertainty of the illness. Once you feel you parent is at a certain stage you mentally prepare yourself for the worst and then having that stage dragged out indefinitely is emotionally very hard. I've just had the 'advanced care planning meeting' with the GP even though Mum is not at end-of-life-but she may be sometime in the near future so best to plan ahead.

Your posts will be read wherever you put them as most seem to use 'most recent posts' or 'I care.....' The dilemma of where to put the post is known to many of us used to the old style TP before the re-vamp.

M

 

[Pigeon11]

Thanks to you both Sistermillicent and Marsaday for your kind words. You are right about me feeling frustrated having mentally prepared for the worst and then being left in this horrible limbo state. I feel so guilty that I am waiting for the news that he has passed away peacefully. I know I will be devastated when he is gone but I want us all to be free from this horrible time.
I really appreciate that you have taken the time to reply to me and that you seem to understand how vulnerable and mixed up people feel. I know it was hard in the earlier stages when he was mobile and had some insight. His aggressive and unpredictable behaviour was very difficult to cope with but I really think this is just as difficult for different reasons.
Thanks again for all your support. xxx

 

[Hannah1]

Hi Pigeon,

Just wanted to extend my thoughts and understanding too. I'm in the same place. It's absolutley bloody awful. Hugs.

Hannah

 

[Pigeon11]

Thanks Hannah. I'm sorry to hear you are in the same position as me. Every part of this horrible illness is difficult but I think when it gets to this stage, the strain starts to show. I get really weary with it all. I think it's all the ups and downs.

We'll both keep posting on here shall we? I think it really helps. Keep your chin up


xxxxxx

 

[AnneD]

I am in the same position and can really sympathise with you.

I am finding it very difficult to cope with the roller coaster of emotions, just waiting for the phone to ring, wanting to be with Mum and yet when I am there I find it so upsetting - I can't bear to see her suffering this way.

It is good to keep posting and know there are people that care and understand.

 

[Pigeon11]

Hello Ann

Just wanted to say thanks for your support and sorry to hear you live 'in limbo-land', like us. It's great to post on here but I find that I am getting sick of the sound of my own voice.

Looking back on my old posts I find I am saying more or less the same things as I was when I first started using TP; basically, when will it all end? It's all I ever seem to talk about. To use a fairground analogy, the emotional roller-coaster you talk about feels more like a 'waltzer' to me at the moment....... things just going round and around, making me feel sick, disorientated and scared but not really going anywhere.

I suppose that some people might think that, as the only place to 'go' is to the very end, I should be grateful; but that depends on whether you are one of those people who dreads or welcomes the inevitable. I flit between both things so I suppose I might be on a see-saw, not a waltzer (or roller-coaster - perhaps I'm taking this analogy to far!!)

Thanks again
x

 

[Ferndown]

Hello everyone, I just wanted to say that I really do appreciate this site and all your comments. Against her wishes my Mum spent 9 weeks in hospital, I visited every other day and she was then moved to a Nursing Home last Thursday. Having settled her in best I could I haven't been able to see her since as the Home have the S&D bug and is closed to visitors. I am in touch with the Nurses every day and Mum is not eating, drinking or taking her tablets which provide pain relief and lifts her depression so I would imagine she is pretty miserable and reaching the end of her time with us. I woke this morning in a panic that I had to go and see her, I realise this is not possible, the home are in contact with the Doctors and have promised to let me go in if they feel she is reaching the end. It's a horrible situation, I know Mum is cross with me for allowing her to go in the home but I had little choice as she needs 24/7 nursing care and I am an only child. I am comforted by the fact that my feelings are normal and am trying to relax and keep positive that I will see Mum soon.

 

[Izzy]

I'm so sorry to read about your situation Ferndown. It must be so hard when things are out of your control I hope this bug is cleared up soon and you can visit.

 

[Ferndown]

I'm so sorry to read about your situation Ferndown. It must be so hard when things are out of your control I hope this bug is cleared up soon and you can visit.

Thanks Izzi. I had a long chat with the care home which is still closed but as Mum is on the ground floor they arranged for me to stand outside the window today and moved her bed so that she could see and wave to me. I am hoping that I can go in and give her a big hug on Monday x

 

[Hannah1]

So weary

I haven't visited dad for weeks. I can't bear sitting there, looking at him, feeding him chocolate buttons while he just lies there. I try to chat to him but usually I trail off mid sentence, because I know it means nothing. He's been ill since my teenage years. I'm 31 now and I'm just so so weary, so tired of his death hanging over me. I'd honestly believed that this winter would be the end of it all. Finally, he was bed bound, finally he looked his age, finally we get to have the end of life conversation with the doctor. But nope, not a cold, not a sniffle, nothing. No infections, healthy heart. He could go on and on and on and on. This is not a life. It's not fair on anyone.

 

[Pigeon11]

Hannah I know just how you feel. I visit my Dad a couple of times per week, sometimes more, but stay from before lunch, till after tea. But this is a relatively new thing - I used to go every two weeks as I used to find it really hard too, especially once he became bedridden, stopped communicating and spent most of his time with his eyes shut - it's been like this for about four years. I found it very difficult sitting at his bedside and making one-sided conversation. If I tried to hold his hand or give him a hug, he would just push me away and when he could, he would shout and swear at me. He hasn't known who I am for about 5 years.

But about a year ago, something happened to make me change my mind. I gave myself a bit of a talking to and decided to get more involved. Now, I go to give him his meals, sort his clothes and tidy his room and I've made a 'memory wall' in his room which I update with photos of family events etc. Sometimes I spend time chatting with staff and the other residents/relatives. I take my Kindle with me or watch TV in his room so at least it's an opportunity to have some quiet time. Even if he doesn't know I'm there, I feel that I'm doing the right thing.

This isn't for everyone, I know but it's something I feel I must do. I'm not suggesting you do this too and I often wonder if there's any point in it. My family say I shouldn't spend so much time with him but I will see it through. You should do whatever you feel is the right thing for you and don't force yourself to go if you find it too difficult. You have had it really tough coping with this for so long and from such a young age.

I wish I had some better words of comfort for you. Like I said before, I hate this limbo-land existence. It's cruel and pointless.

As we are in a similar situation, if you think it would be helpful to talk, you can send me a private message if you want/

Keep your chin up - and keep posting. xxx

 

[Hannah1]

You're brilliant for doing all that, my God, you really are. Four years - I don't want to even try to imagine it. Mum is more like you, she gets more peace from going than she does from not going. I'm the opposite, now that it's no longer about what he needs. For a while I made the effort to take books or assignments I'm working on for college but it was tricky. I'll often coincide my visit to give him his lunch. But the gaps between visits really depend on my own emotional state - if I'm anywhere near black ice with my own mental health, I won't go near the place. When I'm feeling better I'll go more often. I think Christmas is a difficult time, a sensitive time, there's more psychological black ice around generally, but simultaneously more pressure to be with family. Tough one to navigate. But I've just been reminded that life is in the driver's seat anyway, because I just got a call from his hospital to say that he's had a fit this afternoon. Two minutes long, he was in his chair. BP is normal now and he's asleep in his bed. Mum and I are going to visit in a couple of hours... Here we go again.

 

[Pigeon11]

I'm not brilliant at all but thanks for saying it! I moan and complain all the time. My daughter is just a bit older than you (34) and I have a son who's 31. They used to visit with me a lot but I tell them not to go now. They still go occasionally but I'd rather they get on with their lives.

Anyhow he has 4 more sons and daughters and 9 other grandchildren who don't visit. So its just me now most of the time.

Hope things are better with your dad after the incident earlier. Dad used to have occasional seizures but not for a while now.

Take care and keep us posted.

xx

 

[Jaceli]

Thanks Izzi. I had a long chat with the care home which is still closed but as Mum is on the ground floor they arranged for me to stand outside the window today and moved her bed so that she could see and wave to me. I am hoping that I can go in and give her a big hug on Monday x

******* hell Ferndown, have you pinched my situation from earlier in the year!!

I know where your coming from and its horrible to put your mum in a home, you feel like you've abondoned her and its compounded by the damn bug, had exactly the same thing happen to me!
I rang every day for a week, but I did start to see it as a bit of a blessing and it gave me a bit of respite and chance for mum to settle in, without the upset of us seeing each other and parting.

It will get better trust me and she won't understand but it is a last resort in 'caring'.

Take care you'll see her soon. x