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

Hi need, I tj

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.

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.

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.

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.

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?

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.

Thank you for your replies, s

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.

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

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.

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

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.

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!

The optician is coming on Wednesday .

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?

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.

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.

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

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.

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.

Thank you pudcat.

I am so sorry numberlock, but now she is at peace and free from pain. I just wish the same would happen for mu Mum. Take care.

I feel like someone out of an episode of Jeremy Kyle! I have no idea what is happening but trust that the professionals involved in her care won't let any harm come to her. They are the ones who deal with Dementia day in, day out, I'm in at the deep end.

My Brother mentioned to DH about buying a house back in the UK where his business is based, he has toyed with the idea frequently over the years. Maybe he plans to do this ? No idea what's happening to be honest, can only surmise from the little anyone has told me. Maybe he will be down frequently to deal with the problems as they occur.

Mum said she didn't want to see me until she was home and then I 'have some hard questions to answer' implication I have behaved badly. My Brother thinks it is the events of this summer that makes her think this but wasn't present when the Tracker Nurse had to calm her down over the initial memory clinic appointment or when the Memory Nurse had to calm her down as the Council tax letter with severe mental impairment came through and she thought I had written and told them that.

I'm not engaging in any discussion regarding 'hard answers' until I have had counselling. I simply can not let the level of stress that was in our house earlier this year return. I would be hugely failing in my duty of care to my children as GP pointed out to let us get back to where we were. It's going to take sometime to repair the damage done as it is.

My Mum regaining capacity for now, if that is the case, is down to the care she has received at the CH. I obviously made the right choice at the time. My Brother told me to let him take over so I am. I assume he is going down the Live In Carer route as she felt unsafe on her own.

Assumably at some point someone will let me know what's happening. I will be guided by the professionals.SS legal department is involved as far as I can tell so they will keep her safe.

Numberlock, best wishes to you and your family. I like the Irish approach of seeing a wake as a form of celebration. You lost much of the real mother a long time ago and now is a chance to both mourn the person she was and celebrate her life.

WBN. Your journey over the past few months has been extra-ordinary. I think your friend is right and suspect the events of the last few months have helped you gain a perspective on your family relationships and on your parent's divorce. Counselling sounds like a good idea and should help you make sense of it all and to move on.

A lot of the stress will have come from the fact that though you have assessed the problem and found an acceptable solution, you have not had sufficient control to move from one to the other. Your brother clearly needs to control. It is unacceptable that he does so and could then expect you to run round and prop up an unsustainable solution. She may have capacity now after a couple of months of good consistent care and company, but may not when back on her own. And at some point, whether it is a month, three months or a year, certainly wont. What happens then. Unless he agrees (and he will be on the other side of the world, with no good feedback on what is going on, and presumably reluctant to lose face) you wont step in and I assume Social Services will feel the same.

I would be tempted to ask Social Services, the panel, your brother's lawyer etc, how they see things evolving going forward as she (inevitably) loses more capacity. There needs to be a process whereby decisions can be made in a straight forward and sensible way if she is unsafe, unhappy or being home on her own is giving her a significantly reduced quality of life.

I assume that with the earlier planned panel cancelled your brother is aiming for some form of emergency order to get her where she says she wants to be. I also assume that her motivation in insisting she goes home is that this way she gets to see the son she has not seen for five years. (My mother still says she wants to go home, as I don't think she can deal with the finality of giving up her independent life, but happily agrees it is a good idea to stay where she is "through the Winter".)