New member

[Ktynan]

Hello, I'm a new member following my mums diagnosis last week. We have known something has been wrong for about 2 years however it's taken us a while to get a diagnosis.
It still has come as a shock even though the family had researched and thought this is what is would be.

I wondered if anyone had any advice with starting to come to terms in the first weeks?

Many thanks


Sent from my iPhone using Talking Point

 

[Wolfsgirl]

So sorry to hear this - it will take some time to digest the almost expected shock. Glad you have found this place - wish I had in the very beginning. Good luck x

Hello, I'm a new member following my mums diagnosis last week. We have known something has been wrong for about 2 years however it's taken us a while to get a diagnosis.
It still has come as a shock even though the family had researched and thought this is what is would be.

I wondered if anyone had any advice with starting to come to terms in the first weeks?

Many thanks


Sent from my iPhone using Talking Point

 

[Thrippy]

So sorry to hear about your mum. This is the place you'll be coming to to find advice and support. It's been invaluable to me I found it was good to stay one step ahead of dementia so you have the tools to cope with every step of the way.

 

[Pinkstuff]

Hi also new

Hello, I'm a new member following my mums diagnosis last week. We have known something has been wrong for about 2 years however it's taken us a while to get a diagnosis.
It still has come as a shock even though the family had researched and thought this is what is would be.

I wondered if anyone had any advice with starting to come to terms in the first weeks?

Many thanks


Sent from my iPhone using Talking Point

 

[Pinkstuff]

Advice...I would say you are already on the right track

Like you I am new to all this ....My mum is still waiting for a diagnosis but I am pretty sure she has dementia....As for advice well for me I think its been about managing my expectations...as yes on the one hand its a relief to have a diagnosis but on the other hand I am trying to be realistic about what this actually means...what it doesn't mean I am sure is that everyone ( health care professionals ) will spring into action and that somehow mum will be taken care of. What it will mean is that her behaviour can be explained, understood and that there are things that can be done to help live with this ....having said all that I am under no illusions that this is going to be easy and I am very aware that I will need all the help I can get and like you i thought this seemed like a very good place to start.

 

[Trisha4]

Hello, I'm a new member following my mums diagnosis last week. We have known something has been wrong for about 2 years however it's taken us a while to get a diagnosis.
It still has come as a shock even though the family had researched and thought this is what is would be.

I wondered if anyone had any advice with starting to come to terms in the first weeks?

Many thanks


Sent from my iPhone using Talking Point

Hi. To answer your question I think there are many parts to starting to come to terms with the diagnosis. My husband was diagnosed last year with Alzheimer's at age 66 although like you I had known for some time that there was a problem. We decided to tell people about his diagnosis which we have found helpful and supportive. We also decided to concentrate on what he still can do and to do the things we want while we can. So far this year we have been to Panama to visit family, on a cruise round the Greek Islands and away in UK with friends. We still go away for weekends in our motorhome. Another decision we made was not to spoil today with worries of what tomorrow might bring although obviously at times you can't help yourself. Every situation is different. I prefer to be armed with information and this year I have done a 2 day course for carers of people living with dementia. I found this website one night when I was feeling low and I have found it helpful and supportive to read advice and suggestions from others. Don't be afraid to ask questions on here. Someone will have something to offer. On a practical level with your Mum, does she live alone, are there things she finds particularly difficult and what can you as a family do to help with that and what help is available out there. Do you know about memory cafés? I won't go on because I don't know what will be helpful. But keep asking and you will always be surrounded by good wishes on here. My thoughts are with you, your Mum and your family x

 

[Terri257]

Learning about dementia in a proper forum. I did a series of seminars run by the Alzheimer's society. The health care professionals springing into action won't be happening. That's not a criticism you should be able to arrange it when you need it.
Whilst it is early stages I would get the practical things sorted out whilst she is still able ie the will and 2 powers or attorneys. One financial and one for health. Do not leave this too late as it will be far more difficult and expensive to arrange. I've always know my mum has a fear of care homes and that has been exacerbated at time goes on. I've promised her that won't happen and plans are in place to get a full time private nurse if needed. It meant me starting a new business and looking at options on what to do with her property (probably selling 25% equity shares at a time) if needs be.

You mum will probably now qualify for the higher rate Attendance Allowance and exemption for council tax. AA is not means tested but there is a maximum on savings to be able to claim. You will find this very useful to cover increased expenses.

What is available in the area for socialisation and what is the cost. Look for both elderly and for dementia sufferers and carers. The longer you can keep her socially active the better it will be for her. Current memories start to disappear first so finding people of her own age group that will sit and reminisce with her on the old days is ideal.

There are gadgets on the market, some free from the fire brigade and the police to help vulnerable people. Have a look at measures you can take to keep her safe. There are phones you can get that will only accept calls from numbers programmed in. The rest will get diverted to a relative. The Alzheimer's show is on in Manchester at the beginning of July and really really worth a visit. The London show was held about a week ago and they seem to be annual.

You don't say if your mum is living by herself or who is the carer. If it becomes a member of the family under 60 (I think) they may be eligible for carers allowance.

If you can get your mum to start keeping a diary type notebook of what is happening ie taking tablets, what she had for breakfast, lunch tea and to drink it would be useful. If she's not up for it then you will spend a lot of time trying to find out if she is eating and drinking properly. One sign is a sudden behavioural change where she appears more confused that normal. If so first check is for a urinary tract infection. Very very common in Alzheimer's sufferers. As she becomes increasingly forgetful then so will she become increasingly frustrated and I think scared. Irrational responses to what is happening start popping up, like someone coming in at night and hiding things or blaming the family for stealing things are common. It can be very hurtful but just try to stay calm and not contradict her. It can be fairly easy to distract some patients others not depending what's on their mind. If you ask her how she is feeling then I think you can get a sense of what she can retain and what not. Sometimes they forget how to do simple things but are still able to undertake other more complex tasks.

Find out from social services what is available and when. Lots of people I have spoken to find that there is a marked deterioration after a fall. There are pendant alarm buttons you can get for inside the house when your mum is around. Social service may not know of everything available especially if it come from a private supplier on the market.
So lots of learning, early preparation and patience. You will go through a roller coaster of emotions because this is happening to your mum. Whilst those changes happen to mum remember you can still make lots and lots of happy memories together.

Take care of yourself, and your family if you have one. I believe knowing you have done your best to learn everything you can and make yourself aware was there is out there to keep mum calm and content will pay off in the long run. If you get a bit short or say something wrong because of the stress and pressure then learn from it. No-one is a saint and guilt is common but not helpful in this situation. Lots of cuddles and reassurance for your mum will go a long way. Family photos and making memory books is a nice thing to go through together. I like doing my mums hair and nails for her and she loves bubble baths and nice smelling lotions and potions.

For tips when different situations or types of behaviour arise this is a great forum.

 

[Clovie]

Ditto

Hi

I know how you feel. My mum was diagnosed with Alzheimer's last week at the age of 65. Although we knew something wrong hearing the word Alzheimer's was devastating. It's hard to know how to help my Dad as they live 80 miles away and I have 2 young children so it's hard to just get in the car and go and see them. It helps to read other peoples stories and not feel so alone x

 

[Ktynan]

Thank you very much. It already feels better to have somewhere to talk about it. Thanks

 

[Ktynan]

Thank you all for your advice. I'll look into learning more about it somewhere as I think that could really help. I know it's just time, but again it's so nice to have somewhere i know people understand. Thanks

 

[Trisha4]

One thing I didn't say but Terri did, is the benefits of registering lasting power of attorney while Mum still can.

 

[Netty1]

new member, netty1

Learning about dementia in a proper forum. I did a series of seminars run by the Alzheimer's society. The health care professionals springing into action won't be happening. That's not a criticism you should be able to arrange it when you need it.
Whilst it is early stages I would get the practical things sorted out whilst she is still able ie the will and 2 powers or attorneys. One financial and one for health. Do not leave this too late as it will be far more difficult and expensive to arrange. I've always know my mum has a fear of care homes and that has been exacerbated at time goes on. I've promised her that won't happen and plans are in place to get a full time private nurse if needed. It meant me starting a new business and looking at options on what to do with her property (probably selling 25% equity shares at a time) if needs be.

You mum will probably now qualify for the higher rate Attendance Allowance and exemption for council tax. AA is not means tested but there is a maximum on savings to be able to claim. You will find this very useful to cover increased expenses.

What is available in the area for socialisation and what is the cost. Look for both elderly and for dementia sufferers and carers. The longer you can keep her socially active the better it will be for her. Current memories start to disappear first so finding people of her own age group that will sit and reminisce with her on the old days is ideal.

There are gadgets on the market, some free from the fire brigade and the police to help vulnerable people. Have a look at measures you can take to keep her safe. There are phones you can get that will only accept calls from numbers programmed in. The rest will get diverted to a relative. The Alzheimer's show is on in Manchester at the beginning of July and really really worth a visit. The London show was held about a week ago and they seem to be annual.

You don't say if your mum is living by herself or who is the carer. If it becomes a member of the family under 60 (I think) they may be eligible for carers allowance.

If you can get your mum to start keeping a diary type notebook of what is happening ie taking tablets, what she had for breakfast, lunch tea and to drink it would be useful. If she's not up for it then you will spend a lot of time trying to find out if she is eating and drinking properly. One sign is a sudden behavioural change where she appears more confused that normal. If so first check is for a urinary tract infection. Very very common in Alzheimer's sufferers. As she becomes increasingly forgetful then so will she become increasingly frustrated and I think scared. Irrational responses to what is happening start popping up, like someone coming in at night and hiding things or blaming the family for stealing things are common. It can be very hurtful but just try to stay calm and not contradict her. It can be fairly easy to distract some patients others not depending what's on their mind. If you ask her how she is feeling then I think you can get a sense of what she can retain and what not. Sometimes they forget how to do simple things but are still able to undertake other more complex tasks.

Find out from social services what is available and when. Lots of people I have spoken to find that there is a marked deterioration after a fall. There are pendant alarm buttons you can get for inside the house when your mum is around. Social service may not know of everything available especially if it come from a private supplier on the market.
So lots of learning, early preparation and patience. You will go through a roller coaster of emotions because this is happening to your mum. Whilst those changes happen to mum remember you can still make lots and lots of happy memories together.

Take care of yourself, and your family if you have one. I believe knowing you have done your best to learn everything you can and make yourself aware was there is out there to keep mum calm and content will pay off in the long run. If you get a bit short or say something wrong because of the stress and pressure then learn from it. No-one is a saint and guilt is common but not helpful in this situation. Lots of cuddles and reassurance for your mum will go a long way. Family photos and making memory books is a nice thing to go through together. I like doing my mums hair and nails for her and she loves bubble baths and nice smelling lotions and potions.

For tips when different situations or types of behaviour arise this is a great forum.


I would like to thank you Terri257, I am a new member and reading your reply has helped me so much, really interesting reading.