Mum diagnosed and I feel lost.

[Vicki_T2702]

Hi there, I'm Vicki and I'm 25. My Mum was showing signs the last 2 years of forgetfulness, she is 65 years old now, and at first I did put it down to "just being Mum". I moved out of my parents house 5 years ago and subsequently picked up on the signs much quicker than my Dad who seemed to put it down to old age. There are only 3 years between them and they could not be more different.

August 2015 I told Dad I had noticed significant situations where Mum was forgetting short term events. Things like making my partner and I a cup of tea, she walked out of the room and back in and asked if we would like a cuppa, once I had pointed out the already steaming mug on the table she casually asked "Did I make that?" which was the first alarm bell for me.

My partner has also lost two aunts to dementia and he was urging me for months to say something. Dad was taking her away for their 25th wedding anniversary in September and did not want to embrace the subject before then...December came and we still hadn't talked to her. He went into denial at that point and I even had a voicemail one night saying it must be old age and we didn't really need to do anything.

Shortly after this time my Mum rang me one night distressed that she couldn't remember where Dad said he had gone (just to play cards for the evening) or what time he would be home, and I spent my night in tears, I got hold of Dad and he went home straight away. After that I took it upon myself to book her a doctors appointment for the first week of January 2016 without telling either of them and thus we had the conversation we had dreaded at the beginning of the year once I broke the news to Dad.

She was understandably upset but was mostly relieved we had pointed it out, she was scared to go forward but willing to go to the doctors despite worrying she wouldn't know what to say. I reassured her that the doctor would take control of that conversation and she just needed to be honest about any differences she had felt.

5 months down the line she has endured blood tests, memory tests, scans, observations, an ECG and 3 weeks ago she was diagnosed with early stage Alzheimers and started taking Donepezil 2 weeks ago.

I am an only child and my Dad is quite a closed off person, since we started the process we have become much closer but I feel like I need to step up and help with the next part. Can anyone help with where to go next? I assume it is legal documentation such as wills and power of attorneys but it feels way above me, I know how important it is to sort this out while she is in the early stages. I think my Dad feels the same in that we both feel a bit lost and would very much like all the advice we can get.

Thank you in advance, it feels good to be able to talk.

 

[canary]

Hello vicki
The beginning is often bewildering, but there is often relief too as you feel the problem has been identified.
Yes, wills and POA are very good to get in place, but also, I think your dad would benifits from a dementia cafe (or what ever they are called - they seem to have different names) where he can meet up with other people who care for people with dementia and your mum can also socialise. You dad can get a load of advice and helpful hints from there and perhaps wont feel so overwhelmed.

 

[HillyBilly]

Just wanted to say hi, Vicki and bump your post up a little this morning.
Well done on taking the initiative earlier this year.
Others will be around very soon with lots of support and practical advice for you.

 

[grove]

Hello Vicki & Welcome

Just wanted to say hi, Vicki and bump your post up a little this morning.
Well done on taking the initiative earlier this year.
Others will be around very soon with lots of support and practical advice for you.

From me also & hope you find T P (Talking Point) as supportive & friendly as I have done You will have lots of good support on here as well as lots of friendly member's too have a general chit chat etc away from the caring role !


So sorry for you all especially your Mum that she is having these memory problems However am glad you & Dad are talking about it etc & good luck at the G P's ( who has your Mum had the appointment ? sorry if that is the case )

Think 2 very important points too sort out ( see below )

*** Support for your Mum & Dad ( together ) > Go too the main Altz Society Web Page & click on** local Support & (hopefully) you will find some thing suitable = A Altz Support Group / Office & or a Social Group for your Parents ( often called Dementia Cafe which I HATE sounds like the Cafe has Dementia ! ! ) At the Cafe there are activities etc a friendly Cuppa & Cake etc Plus Support Worker's where your Dad can ask for advice etc if he needs too Hope that helps


**** ME time for your Dad so he can have some time off** from caring Carer's Well being / good health is very important


Also if you can find a Carer's Advice Group in your area that would be useful for you too meet other Carer's etc ( ask at the Library , GP etc , etc if there is one )


Take care & looking forward too seeing you around** on TP


Grove x x

 

[marionq]

I would phone the Alz Soc and ask them which dementia groups are on in your area. When my husband was at early stage we started going to a variety of groups where we met people and staff and got a lot of support and information. He is much further along now but going to these groups made it easier to go to day centre when he was ready for that and now when he is ready for respite.

Tell your Dad not to turn down any offer of help as struggling along even at this stage makes it harder later when you desperately need it.

Get POA in place ASAP either by downloading the documents or going to a lawyer. Get it for both finance and health and welfare and register it immediately. Apply for attendance allowance as this money helps to buy in what you need as the illness progresses. SW or dementia advisor can help you fill in forms. Apply for reduction in council tax on behalf of your Mum.

Encourage your Dad to maintain a social life for himself and for them as a couple where possible. Help where you can but don't be a martyr to this disease as it can last many years and you need your young years.

Good wishes.

 

[Vicki_T2702]

Hello vicki
The beginning is often bewildering, but there is often relief too as you feel the problem has been identified.
Yes, wills and POA are very good to get in place, but also, I think your dad would benifits from a dementia cafe (or what ever they are called - they seem to have different names) where he can meet up with other people who care for people with dementia and your mum can also socialise. You dad can get a load of advice and helpful hints from there and perhaps wont feel so overwhelmed.

Absolutely, thank you. There is definitely a sense of relief that we have got to where we are. I will look up the cafes as I think there is one about 10 minutes from us and I would like to encourage both of them to go, and me too. Thanks very much.

 

[Vicki_T2702]

Just wanted to say hi, Vicki and bump your post up a little this morning.
Well done on taking the initiative earlier this year.
Others will be around very soon with lots of support and practical advice for you.

Thank you that's very kind

 

[Vicki_T2702]

From me also & hope you find T P (Talking Point) as supportive & friendly as I have done You will have lots of good support on here as well as lots of friendly member's too have a general chit chat etc away from the caring role !


So sorry for you all especially your Mum that she is having these memory problems However am glad you & Dad are talking about it etc & good luck at the G P's ( who has your Mum had the appointment ? sorry if that is the case )

Think 2 very important points too sort out ( see below )

*** Support for your Mum & Dad ( together ) > Go too the main Altz Society Web Page & click on** local Support & (hopefully) you will find some thing suitable = A Altz Support Group / Office & or a Social Group for your Parents ( often called Dementia Cafe which I HATE sounds like the Cafe has Dementia ! ! ) At the Cafe there are activities etc a friendly Cuppa & Cake etc Plus Support Worker's where your Dad can ask for advice etc if he needs too Hope that helps


**** ME time for your Dad so he can have some time off** from caring Carer's Well being / good health is very important


Also if you can find a Carer's Advice Group in your area that would be useful for you too meet other Carer's etc ( ask at the Library , GP etc , etc if there is one )


Take care & looking forward too seeing you around** on TP


Grove x x

That's really helpful thank you Grove, I agree completely about "Me time" for my Dad, he is managing to go out on Sundays at the moment with friends and I am visiting home frequently to make sure all OK. We are taking Mum out and about when we are free to do so to have some quality time together. I will definitely look into a support group and cafe to visit as this will benefit us all. Thanks for your response xx

 

[Vicki_T2702]

I would phone the Alz Soc and ask them which dementia groups are on in your area. When my husband was at early stage we started going to a variety of groups where we met people and staff and got a lot of support and information. He is much further along now but going to these groups made it easier to go to day centre when he was ready for that and now when he is ready for respite.

Tell your Dad not to turn down any offer of help as struggling along even at this stage makes it harder later when you desperately need it.

Get POA in place ASAP either by downloading the documents or going to a lawyer. Get it for both finance and health and welfare and register it immediately. Apply for attendance allowance as this money helps to buy in what you need as the illness progresses. SW or dementia advisor can help you fill in forms. Apply for reduction in council tax on behalf of your Mum.

Encourage your Dad to maintain a social life for himself and for them as a couple where possible. Help where you can but don't be a martyr to this disease as it can last many years and you need your young years.

Good wishes.

Thank you for your kind words, the points you have made regarding the POA have been great and I didn't know about the reduction in CT so that is most helpful I will talk to Dad about that.

 

[Misskensy]

My mums been digonsed with vascular dementia

Hi I'm Kate and my mums had just been digonosed with vascular dementia. I'm 32 and my mums 66 I'm really sacred and just need to talk about this as it's something I never expected . I don't know how to explain to my mum that she has this . It's so hard to accept she had this I knew in my heart she did but now it's so real

 

[jhoward]

This must be so hard for you Kate: reading back through the posts you seem to have done wonderfully. Your Mum is lucky to have you.

I have dementia myself (Alzheimer's they say), in the early stages, and it's been brilliant the way my son and daughter (both working full-time) took time to come with me to appointments. They were both as upset as me with the diagnosis, even though we were all pretty sure it was coming.

As I begin to get a bit worse but stay stroppy and independent-minded though a bit needy, they've stepped up well to the plate. It must be so hard to see your parent turning in some ways into a different kind of person. And sometimes very irritating. I guess it's just good luck, good judgement and affection that keeps us all more or less on track.

A tough journey ahead of us all, I guess.

 

[Misskensy]

Jhoward thank you for your message. I only write one post that's someone els . I think I put my message in the wrong place. But thank you for your response I knew my mum weren't well by her actions and now it's been confirmed but I don't know what stage she is at. It's so hard as it's all new too me and I dont have any family or partner to support me .

 

[Tears Falling]

Poa is important so getting that sorted as quickly as possible will help.

Honest conversations. With friends and family etc. I think it's a mistake trying to hide the illness away. You may not want to use the word dementia in front of your mum but ensuring the people around and in their lives understand will help. Memory problems would be a more sensitive way to describe in front of mum.

Breaks. For your dad and for you. Dementia doesn't just effect the person who has it. It's an all consuming illness that will take a hold of everything. Maintain friendships. Go to activities. See friends and keep talking.

Your local Alzheimer's society will be able to give pointers and maybe introduce local groups to you all that you can attend together.

 

[Hill Man]

Yes I would echo what everyone says about Power of Attorney - the forms, though a bit long are pretty clear and easy to complete

www(dot)gov(dot)uk(slash)power-of-attorney (sorry the site bots won't let me post the link)

There are two types - finance and health. Finance is one you definitely need - health if you want a formal say in your loved ones health options - though to be honest most doctors will involve you in any discussions. You can create and get them signed now and register them at a later date - you only pay the fee when you register

I sort out all my Dads bills etc on line now - saves a lot of hassle

 

[MrsRuddock]

In exactly the same position

Hi Vicki

Just read you post. Join TP today as really struggling and needed someone to talk to. My Mum has been diagnosed with early onset Alzheimer's and I am an only child. Noticed last year she was forgetting this and repeating and not concentrating. She has since moved to live with me in Manchester and it's been really hard as she doesn't know anyone else and is not driving (awaiting DVLA) and she is not the easiest person at making friends. She is 67 so prob harder as you get older. I felt I needed to move her from Birmingham while it was still early but she is struggling with making friends and can be quite negative. She has started saying things that are not true. Eg. That she's been to a certain place with a friend for holiday when she hasn't. Saying she doesn't want something then when I come home without it she gets funny with me! Don't know what to do. Should I correct her or challenge her? Feel like I'm wrapping her up in cotton wool at the moment. I feel really lost and that I am going through this on my own. Feeling emotional today because this is the beginning.

 

[Shedrech]

Hi MrsRuddock
you and you mum have been through a lot of changes recently, and it's never easy settling into a new environment and new routines - so no wonder you are emotional

it's good that you've found TP to chat things over with the folks here - lots of sympathy and helpful ideas offered freely

sadly, the negativity and untruths (at least they are, factually, to you, but to your mum they are part of her reality) and changeability are pretty common - maybe rather than challenge, try to sidestep, be non-committal, distract - the part of your mum's brain that deals with rational processes has been compromised by the dementia, so arguing/explaining is probably only going to lead to bad feelings, which will remain long after she's forgotten why she feels upset

have you come across compassionate communication; it may help
You can contact our helpline by calling 0300 222 1122 or by email at [email]helpline@alzheimers.org.uk[/email].

have you contacted your LA Adult Services for an assessment of your mum's care needs - it may be that a place at a day car centre may get her out and you will know she's being looked after

just remember you're not completely on your own now, come here to have a chat anytime

best wishes to you and your mum