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

(998 Posts)
CMOTDibbler Wed 01-May-13 09:04:17

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

kalms1971 Thu 02-Jan-14 16:31:53

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

porthtowanone Thu 02-Jan-14 15:42:32

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

kalms1971 Thu 02-Jan-14 14:43:11

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.

porthtowanone Thu 02-Jan-14 14:01:47

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.

Needmoresleep Thu 02-Jan-14 00:50:07

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?

CMOTDibbler Wed 01-Jan-14 22:02:27

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

pudcat Wed 01-Jan-14 21:43:13

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.

porthtowanone Wed 01-Jan-14 21:07:53

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.

kalms1971 Tue 31-Dec-13 16:47:57

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

pudcat Tue 31-Dec-13 12:30:28

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.

kalms1971 Tue 31-Dec-13 08:10:25

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 sad

porthtowanone Tue 31-Dec-13 06:43:18

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.

kalms1971 Mon 30-Dec-13 17:12:50

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

whataboutbob Sun 29-Dec-13 15:06:18

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?

porthtowanone Sun 29-Dec-13 13:32:19

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 !

pudcat Sun 29-Dec-13 13:06:28

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.

porthtowanone Sun 29-Dec-13 11:57:33

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 !

WynkenBlynkenandNod Sun 29-Dec-13 11:51:38

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.

jchocchip Sun 29-Dec-13 11:20:22

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.

whataboutbob Sun 29-Dec-13 11:14:26

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.

whataboutbob Sun 29-Dec-13 11:04:28

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.

WynkenBlynkenandNod Sun 29-Dec-13 10:52:30

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.

jchocchip Sun 29-Dec-13 10:45:32

Just found this thread. Can I join? I'm a bit in denial about Mum. Her memory is much worse although she is fairly good when with regular carers following the routine. The care agency don't help as 4 double calls a day can mean any permutation of 8 people in one day. Lots of new staff over Christmas. I live a long way away so guilt over amount I can do is a feature. SW is also off her case. I put in a complaint to her by email and got no reply and found out from care agency that she had changed areas. Lost dh's gran a year ago and she didn't know me for years.

WynkenBlynkenandNod Sun 29-Dec-13 10:23:00

I'm really sorry to hear that Bob. I'm glad you did get to spend a bit of time on your own though.

I totally understand how it feels to be facing this and I know there's your Brother to consider as well. What happened with me is quite extreme and came about because of my Brother going totally into denial and totally flipping. All the professionals involved have been good and once they got the gist of what was going on have been very happy for me to hide behind them in effect.

Mum's situation has also been complicated by the Galantamine. It is amazing the difference it makes when on versus off. She is hugely sharper once in CH and on it so has dramatic fluctuations in capacity. The professionals are wary after what happened in the summer. She's also got Vascular along with Alzheimer's which adds another layer of complication given the unpredictability. Given my Brother's previous behaviour professionals are wary around her re capacity.

My advice is to start a diary of his behaviour and start tapping into the local support system, maybe have a chat with someone from the Alzheimer's society. I am very grateful that you mentioned you had found the counselling helpful, I have too. I think you'll find it helpful whilst you are going through this next bit.

The other thing I found is how lovely people are and how much support I have had from friends and family. The only slight downside to this is everyone has their own way about doing things and you'll get loads of slightly conflicting advice about how to do things. Listen, take on board but find your way through which is right for you. That may be very different to what others have found have worked for them as Dementia as we all know is so unpredictable and each family dynamic unique. This is where I have found the counselling hugely helpful to help clarify my own boundaries and reevaluate them as things have progressed.

Although things are still not entirely straight forward with Mum, I can see the light at the end of the tunnel now. It could all be resolved when the SW goes in and says she has to stay. Dad always says she will fight and fight then when presented with a done deal so to speak, gives in. So until proven otherwise I live in hope ! I sleep well now knowing the phone won't ring and am glad that I decided to speak to my Brother again and have stepped back in to a much larger extent than I intended. I feel it's the right thing as although it's a slightly fragile kind of peace it is peace which is better for everyone.

Mum is now wary about alienating me again so far more careful of how she treats me. I am no longer evil and plotting against her, that's the GP and SW ! Our relatinship is recovering albeit on a slightky different footing. It's feels quite cheesy saying it's a been a journey but it feels like it. I hope what has happened has highlighted some of the potential pitfalls so it all being on here will help you navigate your way round them to some extent, or at the very least be able to minimise them where possible.

There's no denying where you are standing now is a difficult place but it won't always be like this. I went into 2013 feeling no hope for the future but going into 2014 the hope has returned. I know what lies ahead for Mum but I am confident that after this current issue is sorted out, she will receive the best care available for her in the future.

whataboutbob Sun 29-Dec-13 09:14:06

Well we had our DAd free Christmas, slightly overshadowed by guilt. I went his home on the 27 th and brought him t London for a concert.i was pretty confident he d like it. He didn't, he muttered under his breath th whole time,complained it wasn t proper music, we left in the interval. He didn t recognise his friend who d come along to join us. He was happy to come to my place afterwards, but didn t really recognise my kids or husband. The highlights of the whole episode were the 2 meals we shared. He was in big hurry to get home. Once back there I cooked him and bro a meal and threw myself into cleaning . After the meal he jus wanted me to go/ accompany me to the station. And got quite abusive when I pointed out the train wasn t leaving for 50 minutes and I d just have to wait around.
DH was quite shocked at dad s deterioration.i have to face facts, he needs more care than he s getting ( living with bro who does a bare minimum, my visits which average 3 times a month, twice a day carers who often miss him because he is out). I need to look at residential care, but fears ( apart from the cost) are that 1) he will absolutely refuse and get very angry. 2). Someone will come along and say he has capacity and my relationship with him will be ruined. After the traumas WBN has been through I am very apprehensive about the next year and the inevitable deterioration and steps I am going to have to take.

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