Support for those with a parent suffering from dementia. Pull up a chair and talk to those who understand

[CMOTDibbler]

There seems to be lots of us here struggling with someone close that has dementia - be it Alzheimers, Fronto temporal, vascular, Picks or any of the myriad others.

So come and chat with those who know how it feels to have to choose a meal from a menu for their own parent, what its like having small children and a demented parent at the same time, and how you explain to children just why grandma says such odd things

Thank you pudcat.

WBN I am just aghast at your situation and especially your brother s actions. It actually took months for the penny to drop and for me to realise he has been abroad all this time. It is incredible! I am maybe being inappropriate here, but I can only think he is trying to preserve his inheritance while letting you take all the pressure. Your GP is of course absolutely right to insist you place yourself, kids and husband first. It also sounds as if your brother is trying cynically to reel yr husband in with talk of work. For what it s worth I think it will be helpful to have counselling, and get some perspective and helpful insights into the situation. It should ultimately make you feel more in control. As everyone on this thread knows ( because I've been banging on about it!) I have been having counselling for about 15 months now and it s really helped me. I was a mess before I started. It s not always comfortable and can be tiring but for me it has been worthwhile.
I had a really nice time on my break, my aunt and uncle really spoiled me. The phone has been unplugged since I got back because I just didn t have the energy for my dad s calls, and I was straight back into kiddie care after DH had them for 5 days. I find the less I see my dad/ talk to him/ deal with his problems, the easier it is not to think of the whole situation and leave it for a bit longer. Selfish but true. So enjoy your break and do not get sucked back into carer mode.

Numberlock, my condolences. I hope you get some time to yourself,when all the funeral stuff is over. It s been a long hard road.

Thank you. So do I. I miss her already. :-(

So sorry numberlock. However expected that is, and however much of a release you may feel it was, it is still a huge shock when it actually happens.

WBN, yes the allotment is an escape (when I can get there). I hope you find a good path through your troubles this week and beyond too. I have a number to call for a home optician tomorrow - just hoping for a short waiting time.

Numberlock and Pudcat, I really feel for you both

Ontheallotment, hope you get the chance to go soon. Mine is very neglected right now. Good luck with the optician.

Bob, really glad you got sme TLC from your aunt and uncle. I think my Brother's motivation is to protect his self image. To come back and she's in a Home having lost capacity means he failed to be here during her deterioration and that would damage the image he has of himself as close to Mum and somene who steps up and does the right thing. He finds emotionally difficult things tough so avoids eg. Didn't go to see my Dad in hospital when he had cancer despite beng in the same city.

I pity him now. DH is also going to GP tonight and is thinking of asking for CBT to help deal with the anxiety all this has made him feel. I feel very positive about asking for counselling though I know it will be tough. It's really good to hear it's helped you , I had that in the back of my mind when I asked for a referral.

Sincere condolences Numberlock.

Wynken, sorry to hear there is still no long term resolution on anything and your brother is still being an arse.

I'm struggling at the moment. Spent another gruelling day down with my parents at the weekend. Mum managed to reduce me to tears within 10 minutes of being there. Poor DCs didn't know what to do with themselves. She has reduced the care again and is not coping well. Understandably, she is tired and under strain but she is so bl@@dy difficult to help and can be so mean & nasty. I'm not sure I believe in God - but I find myself gritting my teeth and praying to the universe for strength not to leave her to rot in the isolated homestead from hell!

The school are arranging counselling for my ASD DS because they are so worried about him. It is not helping that we are moving house as well.

As for Dad, well he is mostly away with the fairies. He is better physically, but there is not much brain function going on. He is more agitated, now that his health is better. So endlessly, getting up moving a few steps, sitting down for a few minutes, getting up again etc etc etc. I think part of it is that he momentarily thinks of doing something, but then once he has moved he has forgotten what it is he wants to do.

I'd like to get some counselling for myself, but don't really no where to start. I had some when ex-H left me 10 years ago, but I've moved areas since then. I'm not sure I want to go through my GP - is there a registered counselling body I could go through? What sort of counselling are you having Whatabout?

The optician is coming on Wednesday .

Hi WBN and PBB re counselling. It was my GP who suggested it, and also my uncle pushed me because I was all ready to wimp out. The GP told me re a local counselling centre. I have a friend who is a counsellor and just checked that the place has a good reputation, she said it does. I initially thought I d be going for the statutory 8 sessions but it s been over a year now. I eventually asked the counsellor what the philosophy behind it was and she said psychodynamic therapy ( whatever that is!). I have to say there haven t been many breakthrough moments, just incrementally regaining Some control over my emotions and facing down the guilt. The only real emotional moment was when I realised I subconsciously felt I didn't have the right to have a better life than my mum, who died 18 years ago. She had to deal with my dad and my brother ( dad s always been difficult, even pre alzheimers) so why shouldn't t I? That has been quite powerful in enabling me to pull back from the situation enough to devote energy and emotion to other areas of my life. Good luck!

Thanks everyone for your kind wishes.

I'm glad my mum's journey with dementia is over and I hope all your loved ones find peace too eventually.

I will stick around on this thread and happy to offer any advice or support I can.

Isn't it strange the paths life takes you down and the things you end up being an expert on.

I haven't read all of this thread so sorry if I am repeating questions, I was just wondering if any

I haven't read all of this thread so sorry if I am repeating questions, I was just wondering if anyone has any advice: my MiL has dementia, went down hill a lot when she had a stroke in May, moved into a home afterwards and since them my 8yr old has refused to see her, he says she isn't his grandma anymore, she is just cuckoo. Should I make him see her? Will he regret it if he doesn't? She is quite young to have dementia and hasn't been diagnosed for that long- I guess maybe a year now but it is so hard to adjust to something that is ever changing. My 3yr old will visit her but finds it hard when she thinks he is her son- his dad.

It's difficult isn't it. I wouldn't force them to visit, let them remember her how she was in the good times.

Only my sister and I visit my mum. My sons get too upset (they are adults) and just want to remember their Nan as she was. I wouldn't make him go. I find it very upsetting going to see my mum, but I can't not go. My eldest granddaughter cried the last time she went and doesn't want to go. I look at it this way - Mum cannot remember when I have been, so she is not going to realise that other relatives have not visited. So I would not make your son go. Let him look at photos of her and chat about her so that he has good memories. My sons always ring when i have visited to ask how things are.

Thank you for your replies, s

Thank you for your replies, sometimes I feel bad that he won't visit because it means that I can't visit as often, equally I don't want him to be upset. I know that she doesn't remember my visits but I still feel bad that there are days when she doesn't have visitors, she only retired at the end of last summer, after she was diagnosed and it seems such a big change.

Is there some way you could visit together and he could do a separate activity eg watch a DVD in her room while you sit with her in the lounge?

My Mum doesn't have visitors every day. I used to go every day as i felt guilty that Mum was there on her own. But the first home she was in encouraged me to cut the visits down so that Mum could get used to the home and the activities they offered. This home also has activities and all residents are helped to join in. I try to go twice (sometimes 3) and my sister goes twice. It is early days for you still and the guilt feeling is so strong. It never goes but lessens. Please don't feel bad that you can't visit every day, and don't feel bad about your son. As you say she doesn't remember your visits. I know it is hard but we have to also think about ourselves and the rest of our family. If we make ourselves ill we are not doing any one any good.

I take my dcs to my parents but only because I have no choice. I wouldn't inflict it on them if there were someone to leave them with.
Thank you for the counselling info Whatabout. I'll look into something like that.

Numberlock, do stay around. I have often felt like a fraud in that after a pretty awful crisis last winter my mother is pretty settled and Indeed I have felt a sort of euphoria deriving from the fact that I no longer have the low scale worry gnawing away. I have thought really benefitted from the thread as I found there was a load of emotion I needed to process.

Having been there, though nothing like what others are having to deal with, I hope I have something to offer, and you will as well. If nothing else I went through a huge learning curve, so do know about domiciliary opticians, dealing with junk mail and so on.

Post Bellum. It is so hard, Two steps forward and one back, and if you push too hard, you meet with resistance and so two steps back.

Our parents have made decisions when they were capable and some of the problems they face now flow from those decisions. We cant make them right, we cannot be responsible. But this does not help as you want them to have the best quality of life that they can have. I guess somehow you have to balance your desire for your children to also have as good a quality of life as they can have, and for you to have the same. You cant make it all happen and you will probably need to be a ruthless.

You may find that your mother deep down is very worried about you walking away and so she might be more prepared to compromise if she feels you are at your wits end, and possibly might do that.

And welcome English Rose. I am sure you don't really want to join us, but feel free to do so. Dementia is awful.

It really is a horrible disease, and it was horrible to watch my grandfather suffer with it in his late 70's early 80's but at least he seemed elderly, my MiL is only 65 and is so much younger than anyone else in the home.

Number lock- when they are both having good days we go out for walks- he finds it easier than sitting in her room.

Pudcat- the home my MiL in is similar and encourage her to join in activities and try and make me feel less guilty.

Need more sleep- I am happy to join, no one I know locally is dealing with this so it helps to speak to other people who are.

Hi need, I tj

Unfortunately dementia can start at any age. 65 is younger than me. I dread the future - think I will save up to go to Switzerland.
It is good the home is trying to get your Mum to join in. Walks are a good idea. Do them as much as you can. My mum is now bed bound most of the time.

Welcome EnglishRose - undoubtedly the thread that no one wants to be on, but so much great support here. It helps keep me sane!

Have been feeling pretty low in last couple of days. I got a call from my brother s support worker who said he is better on anti psychotics and they think he has schizophrenia. While it s not exactly a total surprise, it s still a shock to hear it being said. I also feel something between disapproval and contempt for my father. His shielding my brother from psychiatric services and insistence that " there s nothing wrong with him he just needs to go back to university/ go to church/ get a job" is now revealed as disastrous. For nearly 30 years my brother has had untreated serious mental illness and endured God knows how much torment. I really feel Dad selfishly could not bear the wound to his self esteem of having a mentally ill son, and has created a kind of parallel reality all these years. There's a joint case conference next Tuesday, between Dad and brother's respective teams and of course I've been asked to go. I ll need to request a day off work. I just feel Dad is handing over a horrendous baton to me ( my brother's care) after failing appallingly to deal with the situation. He now denies my brother is his son. Jesus.