Hello. Mum has early stage alzheimers

[Rache1]

Hello everyone,
My name is Rachel and my Mum has received her official Alzheimers diagnosis. She has early stage, well I assume it is early stage. You don't get too much guidance on this from the consultant. At the moment she just has very poor short term memory. Most days she struggles to remember what she has done a couple of hours ago. Otherwise she is ok. I just get overwhelmed with worrying about her and her vulnerability. It is like having a child in some respects, in terms of telling them what to do and her trusting everything you say. It just feels an incredible responsibility to make all these decisions for her. We are in the process of helping her buy a flat in a supported living accommodation. Day to day she is still able to live independently but does need some care (check she has taken her meds, preparing meals etc). But again, we worry are we doing the right thing. She cannot live on her own, but it would be wrong to put her in a nursing home. She has started memantine. Generally she is doing ok, although a bit constipated. So that is us. Life does feel incredibly overwhelming and we (my sister and I) have no idea really what we are doing, but I guess it is just a day at a time. I just want to make sure we are doing the best we can for Mum. Quality of life is hard in the sense that her days are often spent listening to the radio, watching tv or sleeping. We try to take her out when we can, but it is hard due to work etc. When we do, within a couple of hours she has forgotten!!! Thank you for listening x

 

[Jaded'n'faded]

We are in the process of helping her buy a flat in a supported living accommodation.

I'd be very wary about doing that. From your description it sounds like your mum is well on her way to mid stage dementia and she isn't going to get any better. (Sorry!) Please check the terms and conditions of the assisted living place very carefully. Your mum may be asked to leave if she deteriorates or disturbs other residents, even if she has bought the place. Assisted living is only ever a temporary solution for people with dementia.

Get all the finances sorted out first (Power of Attorney, etc) then maybe get a needs assessment for your mum via social services. Would she not be better staying put with carers coming in to supervise meds, etc? People with dementia often find it really hard to settle in a new place - if she changes her mind a few weeks in and wants to return to her old home, what will you do?

And yes, it is overwhelming

 

[Karenlansbury]

Hello everyone,
My name is Rachel and my Mum has received her official Alzheimers diagnosis. She has early stage, well I assume it is early stage. You don't get too much guidance on this from the consultant. At the moment she just has very poor short term memory. Most days she struggles to remember what she has done a couple of hours ago. Otherwise she is ok. I just get overwhelmed with worrying about her and her vulnerability. It is like having a child in some respects, in terms of telling them what to do and her trusting everything you say. It just feels an incredible responsibility to make all these decisions for her. We are in the process of helping her buy a flat in a supported living accommodation. Day to day she is still able to live independently but does need some care (check she has taken her meds, preparing meals etc). But again, we worry are we doing the right thing. She cannot live on her own, but it would be wrong to put her in a nursing home. She has started memantine. Generally she is doing ok, although a bit constipated. So that is us. Life does feel incredibly overwhelming and we (my sister and I) have no idea really what we are doing, but I guess it is just a day at a time. I just want to make sure we are doing the best we can for Mum. Quality of life is hard in the sense that her days are often spent listening to the radio, watching tv or sleeping. We try to take her out when we can, but it is hard due to work etc. When we do, within a couple of hours she has forgotten!!! Thank you for listening x

Hi Rachel,

I’m sorry to hear of your poor mum. My mum is 6 years post diagnosis with mixed dementia. I can only advise what I now know, but like you I had no real guidance or knowledge of what was to come.
My advice would be download a care plan from the dentist website and an advance care plan. Try and agree with your sister and your mum, depending how much mum can understand, what care options there are. The admiral nurses that have a helpline can talk you through what is likely to take place and how your mum will need your support. Like the other response assisted living will not be enough for your mum in the coming years. We have mum living with us and she has for the last 4 years. She is an angel and it’s a privilege to care for her, however we have support from an aunty, day care in place to keep mum active, safe and happy while we work from home, but we know that we may still need to consider residential care in the future. Care homes cost around 70-80 k per year and if your mum has financial independence you may need to consider any purchases around your mums care? I wish I knew these things in the beginning. Obviously every person is different but we left it too long to educate ourselves. Good luck for the future x

 

[Rache1]

I'd be very wary about doing that. From your description it sounds like your mum is well on her way to mid stage dementia and she isn't going to get any better. (Sorry!) Please check the terms and conditions of the assisted living place very carefully. Your mum may be asked to leave if she deteriorates or disturbs other residents, even if she has bought the place. Assisted living is only ever a temporary solution for people with dementia.

Get all the finances sorted out first (Power of Attorney, etc) then maybe get a needs assessment for your mum via social services. Would she not be better staying put with carers coming in to supervise meds, etc? People with dementia often find it really hard to settle in a new place - if she changes her mind a few weeks in and wants to return to her old home, what will you do?

And yes, it is overwhelming

 

[Angel55]

Hello everyone,
My name is Rachel and my Mum has received her official Alzheimers diagnosis. She has early stage, well I assume it is early stage. You don't get too much guidance on this from the consultant. At the moment she just has very poor short term memory. Most days she struggles to remember what she has done a couple of hours ago. Otherwise she is ok. I just get overwhelmed with worrying about her and her vulnerability. It is like having a child in some respects, in terms of telling them what to do and her trusting everything you say. It just feels an incredible responsibility to make all these decisions for her. We are in the process of helping her buy a flat in a supported living accommodation. Day to day she is still able to live independently but does need some care (check she has taken her meds, preparing meals etc). But again, we worry are we doing the right thing. She cannot live on her own, but it would be wrong to put her in a nursing home. She has started memantine. Generally she is doing ok, although a bit constipated. So that is us. Life does feel incredibly overwhelming and we (my sister and I) have no idea really what we are doing, but I guess it is just a day at a time. I just want to make sure we are doing the best we can for Mum. Quality of life is hard in the sense that her days are often spent listening to the radio, watching tv or sleeping. We try to take her out when we can, but it is hard due to work etc. When we do, within a couple of hours she has forgotten!!! Thank you for listening x

💗 Hello

I notice you have had a few responses already but I thought I would add that your mum is lucky in the sense she has you and your sister caring and looking out for her, there is no wrong and there is no right about this. No-one is an expert ever. People just doing the best they can, one day at a time. Certainly no-one would judge here ♥️

The other point I will reply to is your question - Would it be wrong to put her in a nursing home? she cannot live on her own. It isn't wrong if it is the care that is needed.

Dementia is sadly a progressive illness so some thought needs to be given for the future. In the end it can be the only option, not always of course but it would be wise to look at residential care and nursing care, in fact we visited several before we ever go to the point where residential care became needed.

The head usually tells you before your heart follows in my own experience anyway.

Look after yourselves too, if you can because that is important too.

Take Care

 

[Rache1]

Thank you both for your replies and honesty. It is so hard and a scary thing.
I will need to have a conversation with my sister.
We are planning to have daily care (which is part of the services provided by where she will be living) but from what you are saying this may only be a short term solution.
At the moment Mum is living with me and has lived with my sister for the last month and we are taking it in turns. But we cannot do it long term. She is adamant she does not want to go home (she lost her husband very suddenly in October, which is what has exacerbated the situation) and home is over 3 hours away for both myself and my sister. I think one of the hardest things is knowing the timings on this journey. If she is actually more mid stage then it does change things. I will talk to the admiral nurses too.

 

[SeaSwallow]

Hello @Rache1 and welcome to the Dementia Support Forum. You have been given some good advice from our members especially regarding assisted living accommodation. This rarely works out long term for people with a diagnosis of dementia. Assisted living can also be quite lonely for the person whereas there are usually other people about in a residential home.
It might be useful to arrange a needs assessment for your mum and a carers assessment for your self and your sister, the assessments might clarify what help is needed for your mum. Please be aware though that if your mum has assets of over £23,250 she would be considered to be self funding.

The care needs assessment: support for people with dementia

This page looks at how a person with dementia can get a care assessment, who does an assessment, how they are carried out, who makes the decision, and tips for making the most of the care needs assessment. It also explains the eligibility criteria.

www.alzheimers.org.uk

 

[Rache1]

Many thanks @SeaSwallow and everyone else for your replies.
We have already looked into this and she would need to self fund.
I will sit down with my sister and we will perhaps rethink and look at our options.
Thank you

 

[SeaSwallow]

Many thanks @SeaSwallow and everyone else for your replies.
We have already looked into this and she would need to self fund.
I will sit down with my sister and we will perhaps rethink and look at our options.
Thank you

There is a lot to consider and think about @Rache1 so please come back to us with any issues that you want to discuss.