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

Numberlock and PostBellum, you're in my thoughts

Hi. My dad has vascular dementia. My stepmum had to put him into respite care on Thursday. It has been the worst few days of life. I am shocked how he has deteriorated in such a short time. He cries, now walks bent sideways and has had a fall. All in 3 days! Hopefully the funding will come through for him to go home tomorrow (huge optimism). Cannot come fast enough.

kalms1971, I am sure you don't want to be here, but welcome anyway.

Its sounds horrific, and very sad. Good luck with the funding.

Needmoresleep - thankyou so much. Just being able to write it on here has helped me x

My MIL has Alzheimers and was until March being looked after by my FIL. We are 240 miles away with a struggling business, so can only get up every six weeks. FIL would not agree to sufficient care for MIL in the house (he is SO stubborn - she had become doubly incontinent so in the end we had to virtually force him to put her into a care home - a very good dementia unit one mile away from him. Alas, self funding as she has plenty of savings.

He is of course very angry with DH and I for "taking his wife away" but believe me there was no choice as he literally turned the carers that we had arrange away! He is now struggling alone but will not accept help. We have now asked social services to pay him a visit to see if they can persuade him to have some help. He is fading fast and will I am sure pre-decease MIL.

This is just such an awful disease - literally a living death sentence.

Hello, can I join you all? I've been hesitating about posting, especially as, rereading my post, it seems so technical and emotionless - but I think that's how I'm getting through the recent developments with my DM: to be uber practical and in control (whereas, things in other areas of my life, not so much!)

Anyway, I am puzzling how my DM (73, Azheimer's, lives alone 60 miles from me) can cope with the pre-treatment needed to blitz a recently-diagnosed bowel cancer before operation.

At the moment it's just puzzling - how can the cancer specialists (who obviously are looking just at the cancer) think that she is really going to make it to a hospital 17 miles away for radiotherapy, five times a week for five weeks, with additional oral chemotherapy and pain relief?

They are, as am I, seeing a very treatable and curable cancer and (I think) crossing their fingers that I will make sure she gets through the treatment to the cure.

Which is fine, but as the radio continues I can see her becoming more and more exhausted, and her condition worsening until she can't look after herself anymore. (I can get over once a week at the moment although I may be giving up my job shortly, so could visit more - but not every day). At that point, breakdown and crisis.

One of the problems is that she has very little insight into either her Alzheimer's (she doesn't think she has it), her cancer or the proposed treatment: daily radio is gruelling enough for someone who wants to do it but for someone who's not really sure what it's all about? It's a very hard road ahead.

On the other hand, she wants to get rid of the cancer; she is very clear about that, although the pre-treatment thing keeps catching her by surprise as I explain it again (sigh).

I am at the stage of accessing support from the local caregivers, voluntary and local authority, and looking into whether I can get hospital transport for her. We may make it through with social services and district nurse support but I think it will be gruelling.

It has really brought home to me how society operates in silos, and treats one thing at a time. In that sense the cancer specialists are merely doing what they're supposed to do: my mother's Alzheimer's really isn't their problem.

Any advice on managing long-term treatment for other illnesses alongside dementia?

Welcome to the board no one wants to be on AMothersPlace and Misiecle.

Misiecle, you might want to see if there is a bowel cancer specialist nurse you can talk to about your mum and whether, given her age and AD, that maybe surgery alone (as long as she wouldn't have a stoma) would be OK - not the best treatment they could offer, but a good go.
I think going to RT on hospital transport would be incredibly hard for her, and it could all lead to a real crisis. It makes a very long, confusing day.

My parents are both chronically ill on top of mums dementia, and managing it all is a nightmare - theres no joined up thinking at all.

CMOT thank you for this reassurance. I've had one chat with a colo-rectal nurse but she's on hols for the moment. I was very pro the pre-treatment for the first few days, especially as the consultant said an immediate op couldn't guarantee the cancer wouldn't come back but I agree five weeks of treatment would be awful for her to live through (as well as being a nightmare to set up and manage).

On the other hand, can I really say no to the pre-treatment? I'm not really there yet, and it may be that lots of help comes through to make it all possible and bearable, but I'm beginning to let myself think that saying no is an option. (I have LPA with my DB, so it could be up to us, I guess.)

Misiecle I think you really need to get advice from a clinician who has experience of working with dementia patients. It's well known chemo can cause memory loss even in those who are well before having it. This will be very gruelling for your mum and is bound to destabilise whatever precarious balance she has constructed till now. Ask to speak to an
Admiral nurse, or whatever dementia specialist nurse the GP/ hospital can provide. Flag up your concerns loud and clear with the oncologists, you are probably right to think they 'll be assuming " the daughter will take care of the logistics".

My Mum has breast cancer, and also a gall bladder fistula (with a stoma bag). It was decided that my Mum would not cope with surgery and chemo. She would have to travel by ambulance every day for 2+ hours to get to the hospital, have the chemo, wait for ambulance and the 2 hours back again. It would have killed her so she was put on meds to keep the tumour at bay. I went with her to all her appointments and discussed the different ways of treating Mum. So as whatabout says talk to the consultant and find out all the consequences .

Bob, "precarious balance" is exactly right - this will destroy it.

We have an appointment with the oncologist in charge of her treatment next week and his secretary has reassured me he will look at her entire health and not just her cancer, and adjust the proposed treatment (proposed by another oncologist, in another trust - we've been sent across boundaries to access the radio treatment) accordingly.

I'll try to get advice from a dementia specialist I can take to the appointment - that's a very good idea.

Thanks for the advice and support - and to hear, Pudcat, that we could consider alternatives: really helpful.

Welcome to Kalms, Anotherplace and Misiecle, I'm sorry you all have reason to be on this thread.

Kalms, has the funding come through ?

Anotherplace, sorry you've had to go through that. One theme of this thread is how the effects of the disease ripple out and split families as people disagree about care.

Misiecle I can't add to the good advice you've been given other than to say my Dad had bowel cancer about 6 years ago. His was caught very early so he only needed an op. he had no other issues and has recovered well, however the op took more out of him and longer to recover from than I thought it would. I can see that pre op stuff as well for someone with Dementia would be a lot to cope with so I'm pleased the Oncologist is going to review in the context of your Mum's overall health.

CMOT how are your parents and Bob how are your Dad and Brother?

Hi,thankyou for making me welcome on here. A meeting is planned for the 5th to try to get my dad 24 hour care at home. The social worker suggested to me today about attendance allowance (can't claim it)or using savings (what savings?) and the worst one was that we do the care ourselves!! One daughter 1.5 hours away, no car and a young child. Other daughter working full time with a husband with terminal cancer. I am fuming!!!

You wonder what planet they are living on Kalms. Is there a reason your dad doesn't get attendance allowance though? Not that it would cover the care, but it is a useful amount.

Mum is having yet another change of dementia medication as she is still vomiting. Nothing awful this week, which is a bonus - dad has an upcoming heart scan, but the lovely volunteer drivers are taking him and will push him in a wheelchair round the hospital

Receipt of AA then helps unlock Council Tax exemption. The two together, especially in the South where even small flats are in top brackets, starts to make a difference.

He needs to apply or at least sign, or you if you have POA. Its a horrid form and someone kind with plenty of experience and went through my first draft which helped a lot.

www.ageuk.org.uk/home-and-care/help-at-home/paying-for-care-and-support-at-home/

Have at a look at the info on here kalms. Your dad should be able to get help funding his care.

My Mother has 24 hour care at home Kalms, well 22 hours I think it is. The Carers swap every 2 weeks. I think there have been hiccups but overall it sounds like it is actually going ok. Don't know how my Brother is funding it, mortgage on the house I think.

I've had a couple of phone calls and am going for coffee with her next week. Am standing firm re not being involved in any decisions. Did agree to drive her to the Bank but rang back and said I'm not comfortable with that and she needs to ask someone else.

She has offered to write me back into her Will but I have declined. She has also apologised for what she said about me this summer and said she was very ill (no shit Sherlock !) . She has absolutely no recollection of saying to me she needed to be in the flat, doesn't remember her two day stay in the other CH, doesn't remember me and the DC's visiting or that I have a dog for 4 years though eventually said she remembered.

She knows now that I had to defend myself about the allegations made to SS, that it affected the DC's plus mine and DH's health. There were tears when she realised. She also remembered I'm not around at Christmas and has organised a Carer and doesn't seem very sure my Brother will be there but has accepted this might be the case and resigned to being on her own. She said she thinks he doesn't want to come back.

Overall she sounds a lot better than she was and DH saw her very briefly yesterday and said she looks a lot better. She also acknowledged she wasn't takin meds properly or drinking enough. Think she's been ill a couple of times since being home but sounds on a fairly even keel now and getting use to having carers there. Said she'll have to be carried out of her house if she needs to go to a Home so guess my Brother will have his hands full in the future. Also said she hadn't given him an easy time. Seems to think time will heal the rift between my Brother and I.

She did thank me for getting the gardener in whilst she was away. She wants the DC to know she was very ill and didn't know what she was saying and wants to see them . That's problematic as they don't currently want to see her. Overall I think it went well. Clearly I need to stand firm about doing/ offering an opinion as it will be the thin end of the wedge. DH's heart rate has shot up again after having her on the phone, his body is having flash backs. I'm feeling ok but am glad I start counselling next week before seeing her.

Hi everyone. How are things? Missing my dad terribly today. I have been visiting him every other day and he keeps sobbing and saying he wants to go home. He will be sat there hoping someone visits. My step mum has no PA today (she cannot drive due a physical disability)so cannot visit either. Its just one day but every hour will matter to him in there. I have written letters to my MP and the care home to send off once he is back in his own home. Not happy with the standard of care in the care home (I will list if you want to read it) and appalled that after 2 weeks of him being miserable in the care home, the extra funding still hasn't been sorted by social services and the NHS funding manager. He needs 6 hours extra funding per day to enable him to return home. I have been so upset at the state he is in that I got a loan but my stepmum was right in making us wait. Because if we help at all it will be expected going forward. And I have no savings

It is incredibly tough to wait but your StepMum is right, it will be expected going forwards. Really sorry to hear about the problems in the CH - please do list them here, we might be able to say things you hadn't thought of for your letter.

The 5th is nearly here, hang in there. Will you be going ? You need to be very firm about what family members can and can't do but it sounds like you have that well under control.

My dad had a fall. The staff said they found him on the floor the tv lounge which is an admission of neglect because the residents should not be left alone.Dad has a large headwound which he was picking with dirty, long fingernails. I have cut and scrubbed his nails and treated the wound. My dad can hold a conversation and is really bored because there are no activities and none of the residents can chat to him. They are nearly always asleep or in their own world. I cannot imagine what that must be like for him. It would distress me if I had nothing to do for 2 weeks and was being frightened by other residents behaviour. He is walking around at night and this is disturbing other residents. He has always been a night owl and used to produce his best engineering designs at night. Staff keep complaining they can't watch him all the time because they dont have the manpower. I am fed up of telling them repeatedly that we are aware of this and are waiting for funding to take him back home! The home has a cat which residents are allowed to pet. My dad misses his cat so much and I asked if he could sit with it for a while in the downstairs lounge. The answer was no because it would involve taking him down in the lift. That would take 5mins!

Oh Kalms, that is awful, I'm so sorry for your poor Dad and all of you. I would put in a complaint to the CQC.

Hi guys,

I am butting in here and I hope you'll forgive the intrusion. Just a quick question really but I am worried about my mum and am not sure how to find out about the early signs of dementia.

She has always had OCD but it has got pretty severe and I don't know if it might be crossing over into something else iyswim.

Are there any good resources so I can try and check? She won't go and see anyone to ask.

Thankyou xx

Hi Pato. The early signs of dementia can vary a lot between the different types, so its hard to look for it yourself. But if your mums OCD is getting really bad she needs some help. Could you call her GP, explain and see if they'll call her in for a 'routine healthcheck' or whatever so they can assess whats going on?

Thanks CMOT, that's really good of you to answer - I think I will talk to Dad about it first. But the GP is a good idea.

Hi Panto. Having a word with your Dad first Iis a good idea. One common theme of the forums is that things are relatively ok for a long time as the person's parter battles on and is able to hide the reality to what is happening as scared to admit they are struggling to cope, implied criticism of the care they are providing and the implications of that.

It might be you need to have that conversation over several occasions . Start with 'how are you finding Mum's OCD at the moment, I thought it seemed a little worse' and leave it at that to start with depending on his reaction.

You could then try again with something like 'I know you said you're coping fine with Mum's OCD but if you ever feel you need a break or someone to talk I'm here for you'