Support for anyone with a parent with dementia - drop in for support, a rant, or a cry. All welcome.

[CMOTDibbler]

Welcome to the thread no one wants to be on, but we are all travelling with our loved ones along their journey with dementia.

Posted a while back and most of you have moved on. Hope that you are all coping ok - can't say hope things have improved as they don't do they ? God I hate this disease so much and I know there are others worse off and I know I should ( and I am grateful for what I have) but watching mum have a semi breakdown as she is so tired and she is angry with the disease and angry that she has to cope as she has no bloody choice. I live in another country and we came here sacrificing our family holiday to be to help and support her and she is not telling the bloody doctors that she is tired and soon might need help ( at the mo she has none as she is seen as a capable 78 yr old, we don't have a MH local team as the person was not replaced so its the GP) DF is worse has some very confusing moments forgets words has the same few sentences , can no longer make a cuppa ( or remember to drink it). Sleeps badly , can't work the Tv remote and basically speaks, lives via mum her paitence is so thin its transparent. I want to be the daughter living next door who can pop in daily and help but I can't ,my dc are young and our life is Not here nor can it be. Just posting to get this all off my chest so hoping that I can enjoy the day tomorrow and that mum can enjoy herself as well but I think that if tonight is anything to go by I don't think she will.

Today 22:03 AWholeLottaNosy

My 82 year old dad has dementia and is now blind. I looked after him for a year but it was so hard, it brought me to the edge of a nervous breakdown. He's been in a home now for a year but it's not been plain sailing. Went to visit him yesterday and it's just so upsetting. He's a broken man, calling out for help and no one was there, being served disgusting food, beans and corned beef hash. Slop, prison food, no socks on his feet, his nose dripping into his food, his commode not having been emptied, eating his food with his hands as he can't see. And when we told him it was Christmas the next day he was really distressed that he hadn't sent any cards or got presents. We weren't close when I was growing up but god I feel so sad for him he's so pathetic ( in the sense of pitiful). There's nothing I can do for him but I'm sitting here in tears thinking about how sad his life is. And tbh terrified that I will end up like him one day. Feel so helpless.

Really sorry to read both your posts. Please join us Over on the long thread in the Elderly parents section, having trouble linking it.

Here

Hello Rosa and AWLN I echo sugarplumtree, come over to the other thread it is a lot busier and there are persons there who are walking/ have walked this sad path alongside their parent with dementia. Also AWLN the description of your father's home sounds bad and frankly unacceptable. Have you visited Talking Point on the Alzheimers Soc website? (not just for Alzheimers, all types of dementia). There are people there with a lot of experience plus moderators who should be able to make valuable comments and advice re the care home.

Hi all, not sure if people are reading this thread as nothing new for a while. Feeling a bit sorry for myself as only child with two parents fering from dementia. My mum has been bed-bound for three years, being looked after by carers at home. My dad is on the decline but generally pissed off and taking it out on everyone around him. I live 1.5 hrs away and have given up v stressful job so work freelance so i can visit every week and sort out admin to domwith the house and their appointments, etc. We have always been a very happy family but now it makes me so sad, and cross, to know he is ranting about me shortcomings to other people, and he rants about,their shortcomings to me. And all everyone is doing is bending over backwards to help him! He has always been fussy and a bit spoilt, and has had things his way for his whole life. Now his memory is fading and his control is slipping, he is lashing out like a child. Sorry for rant but reassurance required!

Hello Coroico.
That sounds difficult. Take care of yourself. You are doing the right thing, but I'm sure it's tiring and frustrating. Take some time out. Do something fun just for you.
I have a similar situation with my mum who is completely deluded. She has undiagnosed dementia. She's v clever, so the memory clinic (to which she was referred by her GP, to see if she could get a diagnosis) that interviewed her several times declared there's nothing wrong with her.

I'm trying to get her to move nearer to me, as yes, a one hour drive is too far, and we can't visit her often. Actually we are taking her to see some flats this weekend. It's better for her if she's living near me.
I envy you your happy family. Ours is terrible.

My dad is in his first year of dimentia, is it normal to have eating problems, he says he can't swallow, this morning at 4am he cried out for an ambulance because he said he couldn't breathe. Mum didn't call for one she calmed him down (by 8am) although taking him to the doctors again with this problem in the morning, it's like he is chewing and chewing his food then spits it out. Any advice appreciated, thank you.

Just coming on here as i need to vent, put this in writing. Going home after a 6mth abscence .....I know DF is worse and DM is hanging in there coping as she has to. feel guilty as I want to do more but I am 1000 miles away with 2 young kids my sister is nearer and does pop in , help out provide what support she can. I know that I will be used as a sounding , frustration board and I don't mind , I just want HER to have more support , she won't reach out for help the MH team don't ask when they come ( plus they change every time). She needs support - not the day centres or clinics which are for him but for her - there is nothing . respite I am thinking should we look at sending him 1-2 nights a month or will this just confuse him more? I would offer to come and stay for a week , but if she had any time off the first place she would come would be to see me!!!! Should we look at starting to get someone in , but who and to do what ? plus obviously this would be at our cost ...Cleaner is not really needed just yet I do a deep clean every time I am at home.Oh I hate this disease so much , I love my home, the surroundings the people but I have this knot of dread( fear???) everytime I go back . last year Dh came for a week as could sense my upset - this year there is no chance of that. .....

Hi I don't think my today's problems are anything on the scale of 1 to 1,000,000 but I need to vent. We arranged for a carer to come in for an hour a week and talk to my MIL, who is Alzheimers but independent as far as self care is concerned.

She continually says she is lonely - not surprised, she lives alone and never invites any of her few remaining friends around. She gave up "entertaining" even on the most basic level years ago. She even complains when she gets a chance to go round to where one friend of hers lives, because she had to pay for taxis and lunch ... So I said I would ask a lady from the agency that drives her to the shops twice a week to drop in once a week as a "company". She was happy enough the first week as it was one of the driving ladies, ie she knew her, but this week is someone she doesn't know and she sounded off, told me I'd sent a stranger into her home, and I never told her anyway. And she didn't want this any more. This is the first opportunity I've had to try and get a carer into her home before she really needs them. She says she's being treated like a child, and you can see her point. When she was all herself, she would just have made tea and dealt with it.

I'm going to try and talk her into it again, but I see arguments ahead and I feel like we are going backwards.

Often I see references to "extra sheltered accommodation" going by, yet I've never been able to find anywhere like that. Or rather, I know of one, but she can't go there as she lives in the wrong district. It's all either care homes, or "luxury retirement flats" where she is.

Hi all, new poster in this section. My MIL has had alzheimers for 9 years, fairly early onset at age 65. This horrible disease has robbed us of a fab MIL and Nanny to our children.

She has been in an EMI care home for 3 years but we are wondering if her needs are now becoming too great. Since Christmas she has deteriorated quite a lot. She now prefers to stay in bed and will mostly refuse offers of food and drink, only eating and drinking with much encouragement. We think that this is partly down to sheer tiredness (shes always exhausted) and she doesn't appear to understand or 'see' whats in front of her.

She also is not compliant with her personal care - she is doubly incontinent and will often lash out at carers who try to change her or disturb her when shes just wanting to lay in bed all day.

We have had a few instances of falls and funny turns where paramedics are called and she has a very uncomfortable few hours in A&E being prodded and poked, bloods, urine, ECG etc and they cant find anything wrong with her - its usually put down to a drop in blood pressure due to dehydration. We have visited her in the CH and found her quite dehydrated at times, laying in bed in soiled pads, very, very sleepy and not wanting any visitors.

We are wondering what on earth to do now? The care home say they cannot force drinks, food or personal care on her - do we leave her there to waste away slowly but doing what she wants (she wants to be left in bed all the time), do we move her to a nursing home where perhaps her care needs will be forced upon her, dragging her miserable existence out even longer just to assuage our guilt over her not eating or drinking? The care home are gently saying that if her behaviour deteriorates further then they may not be able to manage her (she is on anti psychotics).

Between a rock and a hard place. Anyone else been in this situation? What did you do?

I posted under the Elderly Parents topic, didn't realise there was one for Dementia.

Can't link for some reason.
www.mumsnet.com/Talk/elderly_parents/a2173184-Responsibility-for-Elderly-Parents-Support-thread-right-here?msgid=55726605#55726605

Hi. Can I join please? My mum just diagnosed with Lewy body dementia and has spent 3 months in hospital. She is home now and coping on a level - won't accept any help with the house and it is fairly chaotic. She hears voices and her memory is terrible - confusion around times/ dates , medication. I am very worried for the future and just wondered if anyone had any experience of this type of dementi?

Hello, I was so pleased to see this forum. My mother was diagnosed with vascular dementia at age 66, so young and unfair. My mum has always been my best friend and we would talk for hours about everything and anything. Literally I never wanted to put the phone down we shopped together, drank coffee and put the world to rights and then she got pneumonia about 4 years ago and everything changed. She gradually became depressed, emotional, angry everything she wasn't really. We now think this was the start of it all and the pneumonia caused this terrible disease, as my dad informed me that they didn't put the ventilatior on my mum for a while, so he thinks there was a lack of oxygen getting to her brain and it caused some damage. They live in Cyprus, so far away and I really want them to come back to the UK but my dad is very stubborn and dare I say selfish sometimes. But I really feel for him, it must be so hard. I try and be strong for everyone but I have days where I hit a brick wall. I'm going over to see them both in a couple of weeks, as my mum is on a new medication and I want to see how she is doing. Does anyone have any advise for me at all? Or is anyone going through a similar thing who would like to talk too?

Hi Charlie0134
I'm sorry to hear that you mother too has dementia. My mum was diagnosed with vascular dementia but when I Google it, she isn't text book, so I think all dementia's overlap in some way of that makes sense. My mum never heard voices, not that I know off.. But she did have hallucinations which were very difficult to deal with, especially before she was diagnosed, as it was so upsetting and frustrating why she was making 'lies' up. I remember a time I shouted at her 'why are you doing this!' I still feel guilty for that, she just burst into tears and said she didn't know. Of course she didn't but back then we didn't know. It must have been terrifying for her. Have you looked on dementia forums I. E. Alzheimer's website? I am sure there are people on there who are having a similar experience and can give you some advice. I hope you have all the support you need.

Hi Prod - I am Charlie with a name change! Weird that I clicked on here tonight and saw your reply. Things have moved on now as mum is in full time residential care (since November). She really can't cope with anything anymore. The smallest task is overwhelming - living on her own is never going to be an option. She just exists now - get up, get dressed, sit in the chair, cry when we go see her (every day) , go to bed. It's no life at all for any of us I'm afraid. She can't remember the day before and is terrified of everything. I'm not sure how long we can keep going to be honest but we will I suppose. Don't feel bad about shouting at your mum, I feel like that most days. No, she's not doing it on purpose but it wears you down doesn't it. You said she must have been terrified and I feel that's exactly how my mum is all the time - scared but not sure why. Dementia is an evil evil thing. Thank you for your kind message and I hope you get all the support you need too

Thank you Charlie for your message. I am sorry to hear that your mum has had to go into full time care. It is so sad to hear that she isn't coping too well at all at the moment, i hope things get better for her and she settles better in the home and her symptoms get no worse. I also hope this has given you some respite though and reassurance to know she is getting the best care possible. It must be heartbreaking for you seeing her cry each day, i know when my mum cry's i feel so useless, especially when she says i don't want to die, its awful. I just want to take her pain and worry away from her. Dementia is so, so evil, i pray each day that cure will be found. Thank you for your kind words about not feeling bad for shouting. Since her diagnosis, i haven't shouted as i know it isn't her fault and she cant help it. I think patience is one thing we all learn through this and this comes from love. I hope you have a strong family unit around you, so you can support each other through this difficult time in your life x

Not sure what to do about this situation. Dad has early stage Alzheimers and lives with partner who is not coping well. I organised OT to install handrails etc and personal alarms and buddying/daycare to provide regular respite. Dad has refused the buddying etc and they have both refused support from the local Carers' support/social work. Partner used to dowmload her complaints to me, about dealing with Dad's cognitive lapses- all of which she takes issue with rather than letting them flow over her, which compounds the stress.I asked her to take up the councelling support offerd by the Carers' support but she refused. I have taken an emotional step back and take Dad out for an afternoon/lunch every weekend, as I am not up to counselling the partner. I call every second day and this week being on leave from my job am taking dad out 3 times and am having them plus their friends for dinner. Her situation, I agree, is, of itself difficult and I do have sympathy for her as Dads memory loss is very wearing, but I do not have the resource within my self to help her, psychologically.
I have a problem dealing with my aggressive brother who lives 400 miles away and despite long assurance that he would be here every 6 weeks to provide respite, has not been here since Christmas. He says that I should live at Dads for a weekend every month to provide chance for the partner to get away- she says she is too tired to go, as it happens.They havent asked Dad what he wants- he is fiercely independent. The PCN and consultant don't think he needs this level of support and I am happy to visit every evening to provide dinner and provide telephone prompts for meds and meals. Brother talks about Dad's partner as the family slave and insinuates that I should be doing more- I am a lone parent supporting a teenager away at University suffering mental health issues and I have to earn a living. Brother is unmarried with no ties or family and I suspect his aggressive behaviour towards me is in part displaced guilt for his inaction...
Any advice gratefully received....

Just found this thread. Deedee - I sympathise entirely. It seems that you have had a lot thrust on your shoulders to deal with, in addition to your own life. If your Dad and his partner are refusing all outside help, there's not much you can do about that except make it clear to them that you are not the alternative option. It may be that they'd prefer you to do everything instead. There's loads of activities and support out there (our local Alzhiemers society does a variety of things) but some people find it hard to take that first step to access the support. Is your Dads partner on medication? I know several carers who take ADs just to help them cope.

My situation is that my Dad has Alzheimer's and is about 6-7 years along the road now. He functions relatively well but my DM does not cope well. They have accessed support groups and go to regular meet ups which they both enjoy. My DM was reluctant to do this at first. She was very angry and bitter about it but since accessing support (and ADs) is a bit better. I'm finding her harder to cope with than my Dad. She was calling me every time he forgot something or did something odd (no matter how trivial) which was several times a day, and would moan about how terrible it was and how depressed it made her. I found this hard to cope with and stopped answering the phone for a while as she was making me depressed. She now only calls once a day and will talk for a while about how depressed she is and how her life is restricted (she still goes out a lot with her friends). I've learnt that she just wants to moan, so I let her talk and get on with household stuff while she offloads. (This makes me feel guilty as I feel unsympathetic but she's so negative and depressing, it's the only way I can deal with her). I've been to my Dads last few assessments with them both and she spends the entire time talking about herself - it's very difficult for the nurse to actually assess my Dad.

I often have my Dad with me for a few hours or a day and he's really easy at the moment. It's a bit like having a toddler round in that I need to watch him, do zips and seatbelts for him and make sure he remembers to eat and drink but essentially he's not too bad.

Just dropping in. Feeling like shit. Physically and emotionally drained. Dementia is so bloody cruel.

Mom has just been diagnosed. She lives abroad and we can't go to see her.

My gran has Alzheimer's. The sad thing was before my grandad died no one in the family had a clue. Close knit family as well, my man and adult siblings live two streets down and visited daily, I'm in the next town and saw them both several times a week.

I just feel like I failed them a bit. My grandad was 84 and dealing with prostate cancer towards the end and doing things like lifting her in and out the bath. We just didn't know.

The only sort of thing that could of made a difference was that my grans always had MH issues, a lot of the early symptoms of the Alzheimer's we mistook for that.

Is this normal? The not noticing straight away.

Hi I'd like to join you all. I've not read through the whole thread yet but it has been sad and also helpful.

My dad is in the process of finally being diagnosed after my mum got him to the GP. (We've been trying to get them to do this for a couple of years)

He'll have a appointment in the next couple of weeks where he'll get a referral according to the GP.

He's really not going to take it well when he's officially told IYSWIM. He's terrified after watching his mum go through Alzheimer's.

My mum is already panicking about what it's going to be like in the future. We're starting to worry about him driving, he hates to let mum drive. They're falling out a lot I think, because he hates to be told he's wrong/has forgotten.

I'm sure he's aware to an extent what's happening but is totally in denial.

At the moment he's asking the same questions over and over. He's also struggling with following a process e.g asks what mum wants to eat then makes something random. Tries to plant stuff in his garden but gets totally lost, my mum tries to help but is 'taking over'.

I remember my granny's illness so I know why he's so scared. He used to hate when we went to see her in the care home and always said how he'd hate to have his kids see him like this in a place like that.

Sorry this is just a ramble. I think I just need to see what happens when he gets his referral really.

I'm doing my best to support my mum, I speak to her when dad is out at his hobbies. Feels horrible talking behind his back, but he's refused to talk to mum about his memory problems so she had to engineer the gp visit/memory test.

I think she is looking into POA and checking their will.

My parents live within walking distance of us so hopefully we can help if he'll let us.

Thanks for listening to my waffle and to all dealing with this awful illness.

Doh just realised this isn't a v active thread..I'll copy my post elsewhere!