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

Welcome Jchocchip, sorry to hear about your Mum and DH's Gran. That sucks about the SW. Guilt is something that often crops up on this thread, you're not alone. I've found counselling has really helped with mine.

Thanks WBN it is really. helpful to have your insights. I am going to speak to the guy from the dementia team to discuss the capacity issue. Then my plan is to gradually visit residential/ care homes in his town. Dad has always done stuff in a crisis / when pushed in his life and maybe that has given me a kind of fatalistic feeling that it's going to take a crisis now. Although that would be good to avoid. My bro's unrealistic about the whole thing. Because of his lifelong mental illness he has low expectations of life.he knows dad's got dementia and his. Behavior is difficult but he puts up with it. He also stays out of his way as much as possible. Which means he only gives dad minimal support. When it comes to crunch time I don t think bro would go against me.

And WBN I am very pleased to hear the counselling is helpful. I ve been having it for 18 months and just have a few more weeks to go. It has given me the ability not to completely go under. Famous last words but I feel ready to stop and walk away with the tools I have acquired.

I was referred for counselling once but find it hard to set aside time for this so did not ring and make the appointment. I may see doctor again soon as have found everything hard this Christmas.

Sounds like a good plan Bob .That's great you feel ready to stop the counselling. I've found that just a few weeks in I'm using tools I've started to develop. Might be worth revisiting to counselling idea Jchocchip if you are able to find time. I suspect it isn't for everyone ( my neighbour admits she was trying to control the counsellor ! ) but it can definitely be helpful.

Hello ,I am so glad to have found this thread ,Both my parents have dementia and are in nursing homes ,I think I have been coping quite well up till now ,I work 30 hrs a week and have two children but it seems to becoming a struggle ,I am responsible for their finances and dealing with social workers ,but where visiting is concerned it seems I cant go enough according to them ,I visit dad 3 times a week and mum twice ,I don't drive and the homes are far apart so this is quite time consuming .
Christmas was a nightmare ,I felt sorry for the children ,I suppose I just want them to have "normal " grandparents ,my parents are both young to have dementia so that's the most tragic thing ,I have read this back and hope I haven't come across as uncaring or that I don't love them because I do but things just seem so difficult at the moment ,sorry for the rant !

porthtowanone welcome. Who is saying that you do not visit enough? Is it your parents? If so it is probably because they do not remember you going. My mum says no one visits her because she can't remember me going. I would think that if you go once a week to each one you are doing very well, as you have a young family and work. Is there no chance that they could be in the same home together? Sometimes we have to stand back and think what would be best for ourselves and our families. I know I am the world's worst at feeling guilty, but we have to care for ourselves as well.
Have a word with the homes - see what they say about visits. Often there are activities going on which helps the day to pass.

Hi ,Unfortunately they cant be in the same home as one has nursing needs as well as dementia,there are activities going on in the home but they choose not to join in .My dad is the main one who wants more visits ,mums dementia is far more advanced than dads .To be honest my sister doesn't help ,shes too ill to visit much ,so she says ,Christmas just seemed awful this year ,all my friends gushed about there family Xmas while mine seemed the opposite ,of course im not grudging my friends a lovely day ,but I think I was just jealous that mine will never be like that again ,I really will have to give myself a boot up the bum and stop feeling sorry for myself ,but its hard !

Porthtowanone It is totally normal to feel this way. It is really hard and sad to have 2 parents with dementia. You can only do os much, dementia is awful. My dad is at that restless , unhappy most of the time stage. Every thing feels wrong to him,out of his control. No matter what i do, i am walking on eggshells to prevent outbursts. I also underestimated the extent of the Work i would have to do when i took power of attorney.
Have you seen the " i resent" thread?

Hi all. Hoping you have all got through Christmas, it's a tough time of the year. I am waiting for a reply from my dad's MP. I wrote to her because dont know who else to turn to. Dad still in the dementia unit and he just wants to go home. A shortfall in funding is preventing this from happening. He is utterly miserable and I cannot stand seeing him so unhappy. Visiting is a nightmare by bus, 2 hrs there and then back again. I keep crying when I think about him. Husband hates visiting with me, no help at all. He doesn't try to chat to dad or anything

Hi Kalms , I have the same problem with my husband too ,before he would chat away to mum and dad now he has nothing to say ,sometims he will give me a lift to the home then sit outside !! Feels quite hurtful to be honest.

Sorry to hear that Porthtowanone. I cannot see dad for another couple of days because our 7 year old is refusing to go to his nan's. Can't blame him really, he has been there a lot over Christmas so that we could visit the dementia unit. Looking forward to when he is back to school so I can visit freely!! husband sulks about visiting and now son is doing it. They are so selfish :(

It is not wrong to fell sorry for yourself. I know I do. My hubby has not visited Mum since she has been like this. He just doesn't know how to cope. So I am better off going on my own, and not having to worry about he is feeling as well. I find it very stressful going the NH as there are so many residents shouting etc. Mum can be very angry and accusing. She can't help it and doesn't remember it. So I can understand when others don't want to go.

Thanks pudcat. Once ds is back to school it will be easier to travel and visit on my own

Well ,just to round off the day ive had a phone call from the nursing home to say mum has been having inappropriate sexual behaviour with another resident ,this isn't the first time this has happened so a meeting will be called ,just what I need to be honest ,its like going to a parents meeting for a naughty child ,sorry for the rant but things don't seem to be getting any better.

Oh dear Porthtowanone. So throw the ball back in their court at the meeting by asking them what they are going to do to prevent this. Ask if they have a sexuality policy? It is not your Mum's fault and it certainly isn't your fault. What do they class as inappropriate behaviour? Sometimes dementia may make sufferers lose their inhibitions and make sexual advances to others. Or they could just decide to strip off. There was a lady who regularly did this in Mum's previous home. The home should have had training in how to deal with this.

Its not like you can really do anything about it is there? As Pudcat says, disinhibition isn't terribly uncommon, and they should have policies to cope with it.

My mum is having a few good days. Unfortunatly dad clings on to these with such hope that it makes the inevitable downturn so much harder - and it seems to run as she'll have a good bit right before a big drop

CMOT your dad sounds lovely.

Best wishes to everyone, old and new and hope things go as well as they can in the New Year.

in contrast to a year ago my mother is both well and very happy, though without much memory at all. We get on better than we ever did, which almost makes it sadder that she then has no recollection of my visits and of our conversations. I understand that she probably has a couple more years of managing semi - independent living so despite the frustration I need to appreciate the capacity she still has.

My grandmother probably suffered with dementia for 15 years and it looks as if the same will happen with my mother. Though she is naturally gregarious my mother has lost interest in maintaining friendships, presumably because she can't really remember who anyone is. It raises all sorts of questions about what life is really about. As a distraction I am reading just about every Daily Mail article about dementia, at least one a day...with new year resolutions to consume less sugar and more Vitamin E etc and hope they find a cure.

CMOT also well done. Your thread has almost reached 1000 ppsts. Can we have a new one?

Hi Pudcat ,All they do at the meeting is threaten to move her to another home which freaks me out and they know this ,as she is settled otherwise I don't want her moved ,at times I feel im being punished as mum sits smiling not knowing whats happening anyway.

Sat on bus home feeling fed up. The ward manager just asked me not to visit between 1-2. Had to explain yet again it is the only time I can get there.

I know how you feel Kalms . ,seems like life is about juggling things

Porthowanone - I wrote to the Chief nurse and quality officer at the commissioning group and also the MP.Already had a reply from the Chief Nurse. Do not feel pushed to do anything you don't want to x