Upset & scared for my wonderful mothers future

Discussion in 'Recently diagnosed and early stages of dementia' started by Ellieberry, Apr 7, 2015.

  1. Ellieberry

    Ellieberry Registered User

    Apr 7, 2015
    After the last 2 years my sisters & i finally convinced our mother to visit the GP with concerns of her meomory, it has been getting progressively worse..... she went for a CT scan last week & we are now waiting for the appointment at our local memory clinic to get the results of what we suspect to be a diagnosis of Vascular Dementia.

    My husband found this forum & asked me to read some of the posts..... I can see this is a great source of information & support for all who are touched by all types of dementia. My initial question to anyone who lives in nottingham, is can you tell me of any useful local support groups / information on caring for a parent ( my mother is 71 & lives on her own ) .

    My sisters & I all love our mother dearly & want to be there for her in everyway we possibley can be. As most people , we all have very busy lives, demanding jobs which makes spending time with our mother a juggling act for the 3 us. Due to time & distance it is difficult to get to see our mother daily... at the moment it is probably every other day we can get to be with her, we all take it turns at weekends to have our mother stay with us & in the week we try to pop in for tea, cuddles & re assurances after we have finished work. We have already established a phone call routine, morning noon & night to help her through the day, but she craves company, & is becoming increasingly lonely despite all of our reasurances either by phone or in person.

    Even though our mother has not been formaly diagnosed with vascular dementia & may not be..... our mother has been slipping away from us for the last 2 years & the recent deteriation of her memory means we need to start life changing steps & any advice anybody could give me would be greatly appreciated. We so desperately want to help our wonderful mother through this very scary & distressing time.

    Many thanks for reading this :(
  2. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015

    If nobody has said so, welcome to Talking Point. There are fabulous people on here.

    I am so sorry to hear about your mother and this is so difficult and sad for you and your family. It's great your husband found this forum and directed you here. I hope you will get lots of information and support. I, too, spend a lot of time reading old posts and have gotten good advice there. There is also a search feature you can use.

    I live in the States so am not a good person to advise you about resources in your area BUT I am sure someone will come along who does know. Have you contacted the Alzheimer's (UK) people? They might be a place to start.

    What is your mother's current living situation (I am guessing alone at home)? If she's at home, is there any help that comes in or services she receives? It is so difficult to sort this type of situation and doing it long-distance does not help!

    You are smart and kind to seek assistance now and, one hopes, before an accident or crisis occurs. Please do hang in there and let us know how you and your mother are doing.
  3. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    Hello Ellie and welcome to TP :)

    I am sorry to hear about your mum, but pleased that she is at least in the process of getting a diagnosis. That can be helpful both for it's own sake, and also when you are applying for support.

    I don't live in Nottingham so can't give info on local groups. However, I would suggest you contact any or all of the following about support groups / activities / day care and general support:

    ...your local branch of the Alzheimer's Society Tel 0115 934 3800

    ....local Age UK

    .....Admiral nurses are specialist dementia nurses who have a branch in Nottingham - you can contact them by ringing 0300 300 3333

    The above will all have loads of helpful information and services.

    You could also contact your local Social Services dept ( adult social care) for a needs assessment for mum. Also have you sorted out how her bills are paid etc? Do any of you have Power of Attorney for mum?

    There is lots to think about and you don't have to do it all at once. I just want to reassure you that you are not alone and that support is available.

    All the best - let us know how you get on.


    Lindy xx
  4. Ellieberry

    Ellieberry Registered User

    Apr 7, 2015
    Thanks for your kind words & advise

    Thank you Amy for your kind welcome & advise.

    Yes my mum is on her own, I don't think she is a high risk at the moment for accidents within the home yet, but we now this time will come. the only help she is getting at the moment is from myself, my husband & my 2 sisters. I will get in touch with my local Alzheimers branch , no doubt that they can offer some good advise & local support.

    I have started to read some of the old post in the archive, & there is a lot of information available , much more than i had expected......

    I already feel a little better knowing that there are people such as yourself, offering kindness, advice & support.

    thanks again, I will update you when we have visited the memory clinic in a couple of weeks, in the meantime I will get busy, gathering info & contacts for available support.

    Ellie xx
  5. Ellieberry

    Ellieberry Registered User

    Apr 7, 2015
    Thanks for the hug & points of contact

    Hi Lindy, thank you for your kind words & the contact numbers you have given, I will be phoning them tomorrow to start gathering info. I'm sure there is much more to think about than i can imagine at the moment , but we all have to start somewhere, as I'm sure you had to.

    Power of attorney is something my sisters & I have briefly discussed but , I want to get this sorted & established as soon as possible. We have not looked into the getting the utility bills sorted yet, as she is currently paying by direct debit, so all bills are currently being covered. I presume we need a diagnosis before we are able to start this ball rolling. I will ask these questions to the contacts you have given me.

    thanks once again for your kindness, it does mean a lot.

    hugs to you & yours too
    Ellie xx
  6. Tears Falling

    Tears Falling Registered User

    Jul 8, 2013
    Hello and welcome from me as well.

    From what you have said so far it sounds as if you and your sisters are all on the same page in regards to the journey that your mum and her caring family are on. I think in a way that's half the battle.

    If your mum is lonely and needing company during the day does she have any local activities that she already attends or interests that she may be happy to attend with a group. Your local alzheimers society maybe able to point you in the right direction.

    you are not alone so keep writing, asking and learning as you need.

    Hugs. X
  7. our kid

    our kid Registered User

    Apr 8, 2015
    Hi Ellie

    My heart goes out to you.
    I am in the same boat. My mother has just been diagnosed with Alzheimer's. I also have two sisters and we also work and find it hard to be there as much as Mum needs us but travel every weekend to be with her.
    We have assistance from Social Services so Mum now has two care visits a day and you may be able to apply for Assistance Allowance at some stage which will help pay for outings etc for her. There are also pension benefits available. These are some of the things that we have discovered over the last few months.

    Also read this book......'Contented Dementia' by Oliver James

    Don't forget to look after yourself and your sisters as well as your Mum.

    Our Kid
  8. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    Radcliffe on Trent
    Hi just to say you don't need to wait for diagnosis to get POAs sorted, in fact it's a good idea to get those done as soon as possible. My mum did her POA on the advice of her solicitor a good few years before she had any memory problems and I was so grateful it was already in place when things began to go downhill.
  9. Ellieberry

    Ellieberry Registered User

    Apr 7, 2015
    We are finding it difficult to motivate her outside of our circle, her confidence is fading as she feels like she is a burdern despite our re assurances, but we will look to the alzheimers society for inspiration for group activities to keep her active during the day.

    thanks for your re assurance, hug back to you

    Ellie xx
  10. Ellieberry

    Ellieberry Registered User

    Apr 7, 2015
    Thats good to know about a possible assistance allowance & care visits from social services, as company during the day is what she is lacking & so desperately needs at the moment.

    Thanks for the book recomendation, I will order it this evening

    Our Kid, you are yet another caring person, thanks for your kindness

    Ellie xx
  11. Ellieberry

    Ellieberry Registered User

    Apr 7, 2015
    Thats good to know, I will talk to my sisters about this & get things moving.

    Thanks for letting me know this, your advice is gratefully accepted.

    Ellie xx
  12. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Ellie, just dropping in to say hello and check and see how you're doing. I see you did get some phone numbers of agencies to contact and hope you are able to get some good information. Don't be shy to ring them back if you have more questions or concerns or didn't get the information you needed. (I find sometimes I have to be a bit less polite than I would normally be, to get what I'm after, but that could just be me.)

    You do have to start somewhere so start wherever you can!

    I can't give legal advice (in the US or UK) but would encourage you to sort the Power of Attorney, or whatever the correct UK term is, as soon as possible. It's much easier if you don't have to do that as an emergency, no matter where you live.

    It's a cliche and it's easy to say and really, really hard to do, but please do take care of yourself. It's so important to remember you have needs. It's like what they say on an airplane, you have to put your oxygen mask on first before assisting others...or you can't.

    Whenever you have time and energy, please let us know how you're getting on.
  13. Ellieberry

    Ellieberry Registered User

    Apr 7, 2015
    Hi Amy, I have been on the phone to my local Alzheimers Society UK , & spoke to a lovely helpful lady who emailed me some really usefull information & good starting points to the journey we are about to begin.

    I have emailed a couple of lawyers from the " Solicitors for The elderly" website for some quotes for the arrangingment of Power Of Attorney. I have also looked at all of the relevant forms on line, if we were to do the process ourselves, I will see what quotes I get from the lawyers & then discuss the options with my sisters, then we will sit down with our mum & explain it all to her.

    I know she will be upset as she is a proud, intelligent & independent woman, but she also knows that we love her & will look after her in every way, we have already discussed this ,but not specifically about Power Of Attorney. I am hopefull that it wont be too distressing when we talk about it for real.... no matter what, yours & other peoples advise has been to get this sorted now, so this is my 1st job. One thing at at a time.

    Thank you so much for your thoughts Amy, it is a great source of comfort , really appreciated! :)

    You are obviously going through the caring side of Dementia, I hope you & yours are safe & well.

    As for me, I have a very understanding & supportive husband & there is a lovely bottle of red with my name on it , I will look after myself, hope you are too!

    Ellie xx
  14. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Ellie, I'm so glad you got some helpful advice from the Alzheimer's people. Good for you for ringing them.

    As you say, one day at a time. There are times when the to-do list is long (and for me, overwhelming) but it's much easier when you're not taking care of things because it's a crisis or an emergency, so good for you.

    I was petrified that my mother wouldn't sign the Power of Attorney and other forms that I needed, especially because for the past ten years, my mother had not only refused to discuss legal paperwork (even a simple will) but also had repeatedly categorically stated she would "NEVER" be willing to sign anything. I got very lucky on two occasions; a fabulous nurse and chaplain got the living will and durable power of attorney for health care sorted for me when she was in the hospital for tests a couple of years ago (I don't know what the equivalent forms in the UK are called, sorry). During my mother's hospitalization earlier this year, she proved willing to talk about the power of attorney and will for the first time ever. I called the attorney (would you say solicitor? I get them confused) in a panic and he arranged to come to the hospital the next day, which he did, bearing forms and a witness and a notary, and got the paperwork done. Shockingly (to me) she responded to him VERY well and it was quick and easy and not stressful to her at all. He explained everything quickly but completely and I was amazed at how well it went.

    I am finding that even though the dementia is eroding her personality quite a bit, there are often times when her "manners in public" or "must be polite to people" training seems to hold. So while she might be upset with me about something, she will still be polite to the nurse or waiter or the attorney!

    So perhaps if you are uncertain about how your mum would react, or are concerned she could get upset if it's just the family, you might consider meeting with a solicitor. I know it's more expensive but perhaps it would be beneficial or less distressing to your mother? You know best, of course.

    I also want to say to you and everyone else on this forum, the kindness I have met here is all that keeps me going some days, so thank you very much.
  15. Ellieberry

    Ellieberry Registered User

    Apr 7, 2015
    Amy, i does sound like you have a had & still having a diffucult time with your mother
  16. Ellieberry

    Ellieberry Registered User

    Apr 7, 2015
    Amy, it does sound like you have had ( & still having )a diffucult time with your mother. It must be very hard to keep focused on what you are trying to do for the best, when you are faced with the dementia syptoms.

    I'm so glad you have now been able to get the power of attorney arranged, this must be a great relief after such a long process of getting your mum to agree. Bless you, your care & determination has paid off!

    I have discussed the power of attorney with my sisters & we will be appointing a solicitor to arrange this for us. As you & lots of other peolple have told, me , now is the time to get this done, before my mum's syptoms increase. Not looking forward to the conversation, but it is for the best.

    I will let you know how we get on , in the meantime..... you sound like a very caring person , so please take care of yourself.

    Many thanks & Kind wishes to you

    Ellie xx
  17. Ellieberry

    Ellieberry Registered User

    Apr 7, 2015
    A message of thanks & feeling more positive

    This is to update all of you helpfull people on talking point...... my mother has now been diagnosed with early stages of alzeimers & is also showing indications of Vascular dementia.
    We met with the consultant at the memory clinic & he explained the CT results & the cognitive test which was hard to witness, but clearly necessary..... she looked very scared, but put a very brave face on , bless her.... she has been prescribed a drug which may help her, time will tell..... we have been told this is not a cure but in some cases has been known to slow the syptoms down.... we go back in 2 months for another assesment.
    My sister's & I have also got the ball rolling for Lasting Power Of Attorney, we have appointed the soliictor that arranged my mothers will, so she feels as much in control over descisons for as long as possible.....
    Some one on the talking point advised me to read "Contented Dementia " I am about 1/2 way through, wow, this is an incredible insight with very practical advice & information on how my mother is viewing the changing world she now lives in.... She is still in the early stages, but I can already see that this will be a great help in the coming years as her condition advances..... thanks for the recomendation..... I pass this on to all who has not read this yet......Definately a must...
    Thanks for all of the advice & support given on talking point, this is a fantastic place to gain information & support.......Great big hug to everyone in this boat! xxxxxxxxxxx
  18. 2jays

    2jays Registered User

    Jun 4, 2010
    West Midlands
    That is good to read. Thanks for the update. With the book, it's very good advice, but keep in mind once you have met someone with alzheimers/dementia, you've met one person with Alzheimer's/dementia. Not all things mentioned are necessarily going to come your way.

    Not reading, but watching.... May I suggest that you google Tepa Snow for some ideas when/if ever you need them later. Watching Tepa Snow advice has helped me when I was nearly tearing my hair out sometimes with my mum, trying to get her to do things that she just couldn't understand how to do them anymore

    Here is a taster

    Sent from my iPhone using Talking Point
  19. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Id like to second 2jays recommendation of Teepa Snow on youtube. I found her amazing, so clear and compassionate.
  20. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Ellie, I'm so glad you came back with an update. I do apologise for not acknowledging your kind words to me back in April. Things with my mother are settling down quite a bit but it's still a struggle and you are very, very kind to reach out in the middle of your own difficult experience.

    While I'm sure it's a blow for everyone, including your mother, to hear a diagnosis, I am glad you are making progress with doctor's appointment and the Power offffffffffffbg (that was my cat on the keyboard, sorry!) of Attorney. You will not be sorry, later on, that you went ahead with that. Very smart of you to use her solicitor, I agree.

    I do have Contented Dementia in the pile of books I got from the library; I tend to go in spurts where I'm able to read them and then not able to read them. I admit I tried to read it some months ago and literally couldn't comprehend it, but think that was down to me, not the author. On your advice, I will give it another go!

    I do hope you and all your family are coping as well as possible. You will be in my thoughts.

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