Concerns for Mum

[Sarah 12]

Hi Everyone, am new to this group and just seeking a little bit of advice.

My 81 year old mum was diagnosed last year with what we now know as mixed dementia. She is on Donepezil which was working ok for about 6 months. I have noticed in the last few months she is getting worse. I have asked for a referral back to the memory clinic and they rung me today saying she was on the highest dose of this medicine and basically there was nothing more they could do for her, but have referred me to an Admiral Nurse for support.

Mum just doesn't want to do anything with herself, she just lies on the sofa watching TV then moaning to me on the phone every night that she's bored. I have tried until I am blue in the face to get her to go to a support group but it's always one excuse after another. I do have 2 older brothers but they have basically washed their hands of her because she has been nasty to their wives over the past years (I now think this was the early stage of this horrible disease) so I am on my own, apart from a brilliant friend of mum's who I would be lost without and has the patience of a saint.

Sorry to go on but it feels good to get this out to someone that can't see me crying.

My question is what can I do with her, do I have to just sit there and watch her get worse. She gives me the guilt trip every day on the phone, she can't live with me and I can't give up work to live with her.

Any help would be appreciated.

Thanks

 

[Helly68]

This sounds very hard and I hope it helps to share.
Admiral Nurses are great, so I hope you hear back. Not sure if you have had any contact with social services, but if not, I would recommend an assessment for your Mum and one for you as a carer. This may help identifying things like daycare opportunities, respite or the possibility of carers coming in at home, if needed. Do you have Power of Attorney? You may well find that as her decision making declines, this becomes necessary for finances and you can also get it for health and care - I have this for my Mum, who wouldn't be able now to make decisions about treatment.
Memory clinics seem only to diagnose and prescribe donepezil I think social services may be your best bet for further support though sadly you really have to fight to get anything.
If you have a local carers centre they may also be able to help.

 

[Louise7]

Mum just doesn't want to do anything with herself, she just lies on the sofa watching TV then moaning to me on the phone every night that she's bored. I have tried until I am blue in the face to get her to go to a support group but it's always one excuse after another.

Welcome to TP. It sounds like your Mum may be depressed, which is quite common in those with dementia. It's also not unusual for memory clinics to sign someone off after an initial diagnosis and prescription of medication (my Mum's did). It may be worth speaking to your Mum's GP about this, and there is various anti-depression medication which can be given alongside Donepezil so that might be worth a try.

As above, ask for a care needs assessment from social services if you haven't already had one. Lot's of people say that they don't want to go to a day centre but change their minds when they actually go. My Mum initially refused to go as 'it will be full of old people' but she enjoyed it once she'd been and looked forward to going. Maybe you going with her to the first visit might help? You could describe it as a trip out for coffee and cake - don't call it a day centre. Or you could maybe consider a befriender/cleaner to visit if your Mum wouldn't accept someone as a carer. That way she would see someone during the day even if she didn't want to go out which might reduce the phone calls to you which are likely to be due to anxiety/loneliness.

 

[Sarah 12]

This sounds very hard and I hope it helps to share.
Admiral Nurses are great, so I hope you hear back. Not sure if you have had any contact with social services, but if not, I would recommend an assessment for your Mum and one for you as a carer. This may help identifying things like daycare opportunities, respite or the possibility of carers coming in at home, if needed. Do you have Power of Attorney? You may well find that as her decision making declines, this becomes necessary for finances and you can also get it for health and care - I have this for my Mum, who wouldn't be able now to make decisions about treatment.
Memory clinics seem only to diagnose and prescribe donepezil I think social services may be your best bet for further support though sadly you really have to fight to get anything.
If you have a local carers centre they may also be able to help.

thank you for your reply. Yes I do have Power of Attorney for her, it was mentioned to me whilst she had a stay in hospital over a year ago for a broken hip. I haven't had any contact with Social Services, but I will look into it. Mum won't go to any daycare or anyone coming in to the house, I've mentioned the buddy system that Age UK seem to run but she won't have it. I do feel she has been written off by the memory clinic as they have said that she is on the highest dose of the medicine (sorry if i am now repeating myself, its a habit i've got off her).

 

[Sarah 12]

Welcome to TP. It sounds like your Mum may be depressed, which is quite common in those with dementia. It's also not unusual for memory clinics to sign someone off after an initial diagnosis and prescription of medication (my Mum's did). It may be worth speaking to your Mum's GP about this, and there is various anti-depression medication which can be given alongside Donepezil so that might be worth a try.

As above, ask for a care needs assessment from social services if you haven't already had one. Lot's of people say that they don't want to go to a day centre but change their minds when they actually go. My Mum initially refused to go as 'it will be full of old people' but she enjoyed it once she'd been and looked forward to going. Maybe you going with her to the first visit might help? You could describe it as a trip out for coffee and cake - don't call it a day centre. Or you could maybe consider a befriender/cleaner to visit if your Mum wouldn't accept someone as a carer. That way she would see someone during the day even if she didn't want to go out which might reduce the phone calls to you which are likely to be due to anxiety/loneliness.

Thanks for your reply, mum has been diagnosed with depression a few years back now. It was my original call to the GP back in January to see if they could have her in to see the nurse as a "see how you are doing" appointment at my request. The nurse said that she wasn't worried about her dementia but at mum's instance they did do a referral back to the memory clinic.

I will try social services. My mum's friend has offered to go to the day centre with her, she even made an appointment to go and have a look around it but 3 days before mum had a fall and fractured her jaw (another long story) so it was put on the back burner. mum lives in sheltered housing, although I think its called shared living or something like that now, so there are other people around but she just won't make the effort to go and speak to them in the lounge and the support officer is next to bloody useless.

 

[Sirena]

If your mother has recovered from her fall, could her friend now put the day centre on the front burner again? She will probably need accompanying to begin with, rather than just prompting, and if her friend is willing that would be great.

It sounds like your mother is at the stage where she doesn't have the ability or confidence to proactively do anything, and is only confident in familiar situations and places. My mother used to constantly say she was bored because she lost the ability to entertain herself and relied on others. Age UK were little help in her area, SS were useless, her friends gradually drifted away (except for one) and I lived a long distance away, so I provided company in the form of a (self funded) daily carer. I never referred to her as a carer, of course...

 

[jugglingmum]

The memory clinic won't do anymore as there isn't any other medication at this stage.

Maybe the GP could tweak her anti depressant but some of her behaviour is dementia symptoms. So unless someone says "we're off to....now" she won't do anything or go anywhere.

We don't give small children choices as they can't cope and don't understand so the same with PWD.

Getting the friend to take her to the day centre (dressed up as coffee and cake if that works) is the way to go.

SS are unlikely to offer any thing else at this stage anyway.

 

[Sarah 12]

If your mother has recovered from her fall, could her friend now put the day centre on the front burner again? She will probably need accompanying to begin with, rather than just prompting, and if her friend is willing that would be great.

It sounds like your mother is at the stage where she doesn't have the ability or confidence to proactively do anything, and is only confident in familiar situations and places. My mother used to constantly say she was bored because she lost the ability to entertain herself and relied on others. Age UK were little help in her area, SS were useless, her friends gradually drifted away (except for one) and I lived a long distance away, so I provided company in the form of a (self funded) daily carer. I never referred to her as a carer, of course...

She has now recovered from her fall, we are hoping that she will be discharged from the hospital next week as she fractured her jaw! I will ask her friend about taking her to Age UK, how she puts up with mum I don't know.

My husband is convinced mum is playing on it most of the time. She's ok when she's with her friend but I will take her out the next day and she's clinging on to me for dear life and telling me that she feels shakey and doesn't know what to do with herself.

She has lost all confidence, she used to go out every day even if it was only for a couple of hours but now she's lucky if she goes out once a week on her own. Her friend meets her in town on one day and they go looking around the shops or out for a cup of tea but that's it. Its pitiful because I can't do anything to help her.

 

[Sarah 12]

The memory clinic won't do anymore as there isn't any other medication at this stage.

Maybe the GP could tweak her anti depressant but some of her behaviour is dementia symptoms. So unless someone says "we're off to....now" she won't do anything or go anywhere.

We don't give small children choices as they can't cope and don't understand so the same with PWD.

Getting the friend to take her to the day centre (dressed up as coffee and cake if that works) is the way to go.

SS are unlikely to offer any thing else at this stage anyway.

Thank you I will get her friend to re-book and hopefully she will not make an excuse and go. I know sometimes they lay on transport (which she will have to pay for) but that would help. The sheltered house that she lives at has a mobile library comes around twice a week but she won't go to that as her glasses are not right. I've offered to take her to the opticians but she says she will go on her own.

 

[Rosettastone57]

Hi Everyone, am new to this group and just seeking a little bit of advice.

My 81 year old mum was diagnosed last year with what we now know as mixed dementia. She is on Donepezil which was working ok for about 6 months. I have noticed in the last few months she is getting worse. I have asked for a referral back to the memory clinic and they rung me today saying she was on the highest dose of this medicine and basically there was nothing more they could do for her, but have referred me to an Admiral Nurse for support.

Mum just doesn't want to do anything with herself, she just lies on the sofa watching TV then moaning to me on the phone every night that she's bored. I have tried until I am blue in the face to get her to go to a support group but it's always one excuse after another. I do have 2 older brothers but they have basically washed their hands of her because she has been nasty to their wives over the past years (I now think this was the early stage of this horrible disease) so I am on my own, apart from a brilliant friend of mum's who I would be lost without and has the patience of a saint.

Sorry to go on but it feels good to get this out to someone that can't see me crying.

My question is what can I do with her, do I have to just sit there and watch her get worse. She gives me the guilt trip every day on the phone, she can't live with me and I can't give up work to live with her.

Any help would be appreciated.

Thanks

This sounds very much like my mother-in-law she became extremely withdrawn socially although she was never very social in the first place. We tried to get her to a day centre she went at first but eventually she refused to go as she felt she wasn't getting the proper treatment she thought she deserved. Or as she put it not the full attention she thought she deserved. We eventually just settled for a befriending service and a sitting service. She already had a care agency in three times a day who could have provided a sitting service if we needed it. She did however enjoy the Home Library Service run by the royal Voluntary Service who would come once a month to supply her with books and sit and have a chat with her. Eventually she couldn't even follow the plot of a book so it became just a social event rather than discussing a plot line.