Coping with advanced dementia - and everything else

[Pigeon11]

If you've read my posts before, you'll know that my Dad has late stage dementia and all the horrible symptoms that go with it. His deterioration is slow but I don't think he's 'actively dying' (sorry, I don't know how else to describe it) at the moment. I love my dad very much and do my best to see he is comfortable and looked after. I am lucky in that he is well cared for at the NH so apart from visiting regularly and buying what he needs, I have it easy compared with some. Of course there's the emotional side of things to cope with but I know that I am lucky in many ways.

But I find that the emotions that come with watching him suffer his illness leave me with little energy to cope with all the other family events that happen. I have just heard that my brother has been diagnosed with cancer. He has confided in me but asked me not to say anything due to a family wedding that is coming up in a few days. I am so sorry for him and can't imagine how scared he must be but am finding it hard to deal with this when I can't really talk to the rest of the family. We have a large family but unfortunately for various reasons, I find myself being the one they turn to for support when things get tough. I'm an anxious person by nature and am finding I am finding it hard to cope with all this.

I'm sorry if it's inappropriate to put things on here that aren't really to do with dementia but sometimes life isn't easy to put into little boxes - everything gets mixed up together. I wish life was easier sometimes.

 

[janma221]

If you've read my posts before, you'll know that my Dad has late stage dementia and all the horrible symptoms that go with it. His deterioration is slow but I don't think he's 'actively dying' (sorry, I don't know how else to describe it) at the moment. I love my dad very much and do my best to see he is comfortable and looked after. I am lucky in that he is well cared for at the NH so apart from visiting regularly and buying what he needs, I have it easy compared with some. Of course there's the emotional side of things to cope with but I know that I am lucky in many ways.

But I find that the emotions that come with watching him suffer his illness leave me with little energy to cope with all the other family events that happen. I have just heard that my brother has been diagnosed with cancer. He has confided in me but asked me not to say anything due to a family wedding that is coming up in a few days. I am so sorry for him and can't imagine how scared he must be but am finding it hard to deal with this when I can't really talk to the rest of the family. We have a large family but unfortunately for various reasons, I find myself being the one they turn to for support when things get tough. I'm an anxious person by nature and am finding I am finding it hard to cope with all this.

I'm sorry if it's inappropriate to put things on here that aren't really to do with dementia but sometimes life isn't easy to put into little boxes - everything gets mixed up together. I wish life was easier sometimes.

Of course it's not inappropriate this horrible disease is wearing enough but hearing about your brother is so sad and it's no wonder you are stressed. Will keep fingers crossed your brother is okay. As you say everything gets mixed up dealing with dementia and everyday life.
Take care and look after yourself.
Jan xxxx

 

[Izzy]

Oh dear I'm so sorry to read your news. It must be terribly hard for you. At least you can 'talk' to people on TP. I hope that helps a little. x

 

[angecmc]

Sorry to hear about your brother, life is so cruel at times, I hope he will be ok and it is ok to post on here about all aspects of our lives because everything about our family affects how we feel and cope with the person we are caring for with dementia. Just for the record it can be just as hard dealing with our loved ones when they are in a nursing/carehome as it is if they are at home. xx

 

[Farmergirl]

I went through similar....whilst mum was being moved from residential to EMI because she was escaping, and falling etc, my brother was undergoing tests for testicular cancer which thank God, it wasnt. He is still having health problems. Then I had to have a chest Xray for possible lung cancer, which again was thankfully negative.
On top of all this, Ive been told I may not have a job come Christmas, my teenage Asperger daughter has discovered alcohol (which dosnt agree with her) and Im supposed to just 'keep calm and carry on'.
There are days when I feel like screaming...
and nights when the whole thing wakes me at 4am (its always 4, dont know why). Life is very unfair, and I try and console myself with the fact that God knows I have done my best to do the right thing by my mother, my extended family etc, but sometimes people dont seem to have a sense of duty and I find this horrible.

I think you need to get it out, and sometimes here is a very good place - we are 'strangers', but sometimes, Ive felt closer to people on here, who have had the same experiences and have helped me where certain of my relations have treated me worse than a stranger.

 

[Pigeon11]

Thanks to both of you. It really does help being able to post on here. I don't know what I'd do these days without it.

I'm trying so hard not to make a fuss and get upset as I know how this affects everyone around me. I'm afraid all the worry (lots of different things) made me quite ill earlier this year and ended up in a bit of a state. I don't want it to happen again so need to keep myself strong and as I said, this does help. I hate to be so vulnerable and hope I don't come across as someone who is self-pitying. I'm not really like this, that's why it's so hard at the moment.

 

[Pigeon11]

Farmer's girl your post crossed with mine. Your life seems to be as difficult as mine at the moment. It's so difficult isn't it and I really do sympathise. I hope you're able to cope with it all and have some good support at home?

I can't believe what you said about waking at 4.00 am - that happened to me too. And I have the same thing with relatives who seem to think I'm invincible too. I get so angry at them for not helping but then find myself making excuses and trying to protect them.

I just keep saying to myself, "You are doing your best and this will pass". But then I start thinking about all the daft mistakes I made.......

 

[Pigeon11]

Sorry to be on here again. I didn't sleep well last night and have woken up feeling really sad and angry at the same time. I have to go to work soon and just don't feel like it but know I have to get on with life as normal. I don't want to get ill again and talking really helps.

Yesterday, I went to see my dad but he was angry and shouted (incomprehensibly) at me when I tried to make him comfortable. This is quite usual, but this time I found myself getting angry back (only in my head, not directly at him). I know it's not his fault but I had gone to see him after the news from my brother thinking I might find some comfort as it's so peaceful sometimes sitting in his room. But when he shouted at me, I just thought, can't you just give me a break and be nice to me for once ?! How ridiculous and selfish that I expect him to understand my mood and react accordingly!

I must pull myself together and stop all this. It's just no good for anyone. feeling sorry for myself

 

[Grannie G]

You are being very hard on yourself Pigeon.

You sound as if you are bottling all your emotions to protect everyone else. At least you can say what you want here. I hope it helps just a little bit.

 

[Pigeon11]

Thanks Sylvia, I am hard on myself and I have to accept that this makes things worse sometimes. It's a thing I do in other walks of life too.

But I'm not known for bottling things up and that's a problem at the moment , especially as I need to keep quiet about my brother's condition till after the wedding.

As far as the involvement in my dad's care goes, I've made it clear to family that I find it hard but I have never made any demands on them, just accepted they don't feel able to be part of things. I don't want the added problem of the arguments and ill feeling that would ensue. In other words I have rolled over like a submissive dog (and then I come on here moaning about it!) To be honest, had I known he would be still around all these years later and how hard it is emotionally, I think I would have been more inclined to ask for help. Not sure it would have been given though.

 

[lilysmybabypup]

Hi pigeon,
Just popping in to see how you are faring. I hope your brother has a positive outcome and you're not feeling unduly burdened by being the keeper of such a painful secret.

My dad seems to be teetering on the brink at the moment, but I'm so blessed to have a sister to share the burden and worry. Mum is catching her breath, literally, since her health has seriously waned since Dad went into a nursing home 2 weeks ago. Sorry to moan on about my situation, just want you to know I identify with your emotions and offer a shoulder on which to cry or rant, whatever is needed.

I've also felt like all joy has been sucked out of my life right now, and I find myself annoyed when my husband is in a perpetual mood of good humour and elation because he has just completed a long period of studying for his Masters of Business Administration, while working full time I might add. He is rightly feeling a wave of relief and euphoria as he gets his life back after spending every night and all weekend studying, and I feel like I'm sinking into oblivion and need him to grab my hand and save me, with a suitably somber face.

Hope you're finding some balance and allowing yourself some moments of joy.

Stephanie, xxx

 

[Pigeon11]

Hello Stephanie

Really nice of you to keep an eye on me, especially when you have enough on your plate

The wedding went well. My brother was being very positive and that helped. He also told my other brother towards the end of the day so it was a little easier and we all managed to have a lovely day despite everything.

I'm sorry to hear your Mum's not been too good either. That must be a big worry on top of everything else. It's good you have your sister to support you - it really makes a difference, I imagine. Your husband must be so pleased to have finished all his studying etc and it's only natural he will be feeling like he does, but I know what you mean. It's hard when you're so drained from the other things to muster up any energy to join in. Life can be such a balancing act sometimes.

I haven't seen Dad since Thursday due to the wedding and everything else. He's quite stable at the moment so I don't have to cope with what you're going through just yet. I'll be over there (it's around 12 miles from where I live ) at lunchtime today after I've done him some shopping (he needs new shirts and toiletries) and will give him his Sunday lunch and stay on until tea-time. It's quite peaceful there when it's just me and him in his room. He doesn't sit out in the lounge very often - perhaps once or twice per week as he gets pressure sores very easily despite everything they do to prevent them.

I talk to him a little but rarely get a response as he's not able to communicate now. Sometime the odd word slips out but it's a bit random, and just incoherent mumbling. Most times he is sleeping and doesn't react to anything. He's been at this stage for such a long time now - years. He doesn't even like me to hold his hand and will usually pull them away angrily or try to hit out. I find that quite hard. It's selfish I know but it would be just so good to get something back. I know it's the illness, not him but it still hurts to be rejected.

Off I go again feeling sorry for myself - but rather that than moaning at my long-suffering husband all the time.

Off to sort some breakfast now. Keep us all up to date with your news if you can.

Lots of hugs xx