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Advice please - Mum with Dementia - Carers UK Forum

Advice please - Mum with Dementia

For issues specific to caring for someone with dementia.
As some of you may know I care for my mum who suffers from dementia and at the moment lives independently.

For a few days now I have been in a quandary about what to do for the best. Mum is often depressed and my sister who visits once a month (she lives a long drive away) has suggested that when the time is right ??? then three of us i.e. my sister, brother and myself should have her to live with us on a rota system.

This I am convinced would have an adverse effect on mum and confuse her even more, moving her from place to place. My sister would, I know have mum to live with her full-time but her and her husband need to work and it would mean my sister not working for 3-4 months of the year which she is willing to do as she is self-employed. I’m not sure though that she fully accepts how mum would be in 1 – 2 yrs time and is not thinking things through properly. Or is it me Image I don’t think I could give her the care and attention she may need in the future but then feel guilty about this too Image Image

I have suggested that at the appropriate time we should find a good home for mum where she could be looked after by those far more experienced than us. My sister is completely against this and feels that all homes are the same and mum would be neglected. Personally I would also hate this to happen to mum but surely there must be some good care homes around, even though mum would not be able to afford private care. I know this is probably not going to happen within the next few weeks/months but I am really worried about it, plus I am undergoing tests for a health problem of my own at the moment so I’m a bit all over the place. Can’t afford for me to go into hospital, as I wouldn’t be able to see mum and couldn’t tell her as she would worry, but then if I need anything doing then I would need to get it done so I could carry on caring for mum as I do at the moment Image Image Image

My sister-in-law and I are taking Mum out more now, 2 or 3 times a week, even just for an hours drive which she enjoys. For a long while she wouldn't leave the house except to come to ours for the day but now jumps at the chance of a drive which is great.

Sorry, I feel a right misery, but would really appreciate some help. I don’t necessarily want anyone to agree with me but just to give me the benefit of their experience with dementia. My sister has a heart of gold and is only saying what she thinks is best for mum but I don't know if she is right or not.
i think its only normal to worry,, our mums look after us when we needed it and then the role seems to reverse and some times a bit tooo quickly.

I think moving around would really confuse your mum, and i think your fears of not looking after her proper are wots called carers syndrome, we allworry we are not giving it all we can at times, and i know like tonight amy wanted a story b4 bed and then it was late and i needed a widdle and her being tiered she hasnt had as much physio and now i feel pretty bad about it. I should be more organised really

if your sister lives along way off then would she want your mum in a home near her? or would the location of a home become an issue and cause an argument that isnt needed.

I cant offer u much advice only tell u that your normal,

I hope your tests go ok,

massive hugs

xxxx
Dear Adeliene

I agree with Pixie - moving your Mum around from house to house when she is already confused would probably make her confusion worse. Mine is confused if she just spends a day with my sister; most of the time now she's convinced that she's on holiday and keeps asking me when we're going "home" - when she's like this nothing I say or do will convince her that's she's in her own home where she has lived for the last 17 years - to her "home" is the flat she shared with Dad when she got married 64 years ago.

And, no, not all care homes are the same - there are some lovely homes out there staffed by very caring people - it's just that they don't make good news and only the bad ones get reported on in the press. We are lucky in that Mum has sufficient savings for us to make a choice of where she goes, if we decide to go down that route in the future. For now the plan is that she continues living independently with me visiting every day for as long as possible, then when it seems that she can't cope any longer I will move in with her (she's got a two bedroom flat, mine has only one) whilst we look around for a suitable care home. To be very honest I don't think that I would last more than 6 months caring for her 24/7 - I already resent the time I have to spend looking after her now which is not a good situation for either of us and one that leaves me wracked with guilt.

I think you need a 'family conference' with as much information as you can get together on prognosis for your Mum's condition; any help that SS can provide and as much information on local care homes as is available so that you can all make an informed decision.

Try these two links - the first is Care Quality Commission with government inspectors reports on care homes. the second is a guide to care homes all over the country.

http://www.cqc.org.uk/registeredservice ... search.asp

http://www.carehome.co.uk/
I have to go along with what Rin and Susie have said - your Mum needs stability to save her from even more confusion and obviously a chat with the rest of the family is needed........to be honest, I don't envy you having to sort this all out! sending love and ((hugs))))) xx
Thank you so much, it's such a relief to have you to talk to. Your advice has been helpful and many thanks for the links Sue, didn't even know they existed Image As you say, I think we need a round table conference and this may come sooner rather than later and we all need to be happy that the outcome will be the best option for mum. Although I am the eldest I am not the most forceful of characters (although my husband disagrees Image ) and lack confidence so I'm easily persuaded that others are right. I think in this instance though, being mum's main carer I feel more in tune with her needs so will probably be OK. The last thing I want is a family feud and will do my utmost to avoid it. I think we all want the best for mum but see things slightly differently so all need to get together to discuss the situation.

Mum also has a BCC (very slow growing cancerous mole) on her face and originally decided not to have it removed but I think she has started touching it in the night and making it bleed. The earliest NHS appointment to see a dermatologist was the 24th November and mum was unhappy that she had to wait so long so we are going to see the Dr privately tomorrow (only rang them on Monday - money definitely talks doesn't it) and hopefully it can soon be removed. I'm sure this is adding to mum's depression at the moment as she keeps trying to cover it up with face powder. We have decided that no matter what it costs, she deserves every penny.

Love and (((((((((((((((hugs)))))))))))))) to you all
xxx
I really hope u r ok

fingers crossed for u and your family
Pearl I can't add anymore to what the others have said really. You are lucky that you have family support which as you know, you need to keep, so I hope that you can all get together and come to a decision that is good for all of you.

Sending you lots of love, I know this isn't easy xx