1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    East Sussex
    I really have no idea of where to start ....the beginning ... this week ... just know I have to start putting it down before I explode

    Yeah, I've heard the "you are just reliving it" view, but for me, talking helps

    So here goes ... from a while ago

    25 May 2014
    I'd been down to see mum & dad the previous weekend, helped with painting the garden fence, not finished it, said I'd carry on in 2 weeks & please wait

    So, mum can't / won't wait & falls off the ladder while painting, beaks her hip & ends up in hospital. Nice one mum

    Hospital misdiagnosed stroke & move her 20 miles to another hospital & then can't move her back as no bed!

    As she is on the stroke unit, they won't let her out of bed, physio refuse to act as different hospital, (same district), I complain to her surgeon, 5 days post op & no movement will reduce recovery, I tell the staff, I don't care how much you hate me, she's my mum & I will get her moved

    I'm 80 miles away, so phone calls, 160 mile round trips every weekend, eventually get her into a rehab unit close to dad

    Aug 2014
    After several falls, lots of pleading & emotional blackmail, I get dad to go to the doctors & he goes for a brain scan

    Mum comes home, Zimmer frame, then sticks, not exactly able to help when dad falls, so paramedics called a few times

    Then I get a garbled message from my brother, dads fallen, mum is out & what can I do? Seriously. I'm 80 miles away & he is 5 miles away

    Long story short.
    I call the house, paramedic answers. I demand they take him to hospital, sick of not getting any answers. He had a brain scan in Aug & still no results

    Paramedic was amazing. Definitely went the extra mile. He got hold of the Doctor, found his results showing he had fluid on the brain & made dad go to hospital

    Two days later they want to discharge dad, when mum points out he is dragging his leg, possible stroke? The next day I visit & see his face has dropped, find a medic & ask about possible Stoke.

    I'm told in no uncertain terms, they are trained & I'm not. They would have seen this if he had had a stroke. Silly girl

    I phone. I complain. Nothing. He's booked for a scan. It'll happen. They are busy. I know they can pinpoint the time of the stroke if the scan is done within 5 days. Within a month if after this.

    Scan done on day 6
    Dad had a stroke, within the last month

    Call me sceptical, but the paramedic noticed nothing to indicate dad had a stroke, they delayed the scan till day 6, I think they missed it & covered their b***s

    Anyway. Dad then got pneumonia, take it a day at a time & not expecting him to make it. But he did

    Dad lost about 20 years of memory over night, I had to tie my hair up to make it look short so he recognised me. I joked that my brother had aged suddenly lol

    Dad was discharged to a nursing home, just after Xmas, got pneumonia again & ambulance back to hospital

    Feb 2015
    I got the call as I was driving home, turned round & went back to mum. Walked in. Grabbed her coat, bundled her in the car while phoning my brother, picked him up en route to the hospital

    Dad was in resus when we arrived, so distracted mum while we waited. They stabilised him & we visited. The 4 of us had a really good couple of hours, laughing & joking, while they found him a bed

    They said he was fine. They said he'd stay in a few weeks & then go back to the NH.
    I took mum & my brother home & then drove 80 miles so I could be at work in the morning. I told them I was going to be 80 miles away, should I say. They said go home.

    At 13.30 I got a call. The hospital had been trying to get hold of mum
    "Really sorry to do this in the phone, but your dad died an hour ago".

    Needless to say, mum didn't cope too well.

    Mum was then diagnosed early staged Altzimers. My brother is totally in denial about this

    I've been doing 160 round trip every weekend for 9 months, while working full time & I'm on my knees. I'm so tired I'm crying. I take my brother to lunch on one visit & beg him to help.

    I laughingly say, hey I know, I'll sell my house, quit work & move down .... his response ... Yeah that would work!!!!!!!

    Aug 2015
    16 months of 160 every weekend. All I do is work, sleep & drive
    I've ended up sorting LPA & Probate, put my house on the market, hand in my notice & move while waiting for the sale to go through. I took a local job, rubbish pay & 3 steps down to help with mortgage payments

    Jan 2016
    Gave up the local job. House sold. Move in with mum as carer

    We've had our ups n down. Trying to settle into this new life, where she has to accept I'm not in my teens & I'm not going to tell her everything I do, while she has to accept I'm doing everything I can to make her life easier

    Like I say to her, I may not be the best choice, but I'm what she has

    Sorry, just crying putting that down
  2. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    East Sussex

    It's funny how different people cope

    Brother ....
    She must have had it for 40 years then, coz she's always been forgetful
    I force him to visit weekly, pick him up n drop him home, I think mum knows I pressure him, but she loves his visits, so she pretends she doesn't know
    I know he loves his mum, just rubbish at showing it & he refuses to see she is getting worse

    My eldest son
    Lives in his own little dream world
    No idea anything is wrong

    My youngest son
    My rock. My sanity
    No, I don't tell him that. I want him to go out & be a young lad, not worry
    When I sat him down & said I'm thinking of maybe selling the house & moving nearer, he told me to do what I needed to, not to worry about him. He would be fine.
    He phones me every week to see how I'm doing & ask about his grandma
    He offers to get the train to visit if I can drive him back, Sunday service being so rubbish. I usually puck him up & take him back, even if that us a 320 mile weekend!!!!!

    Some say .... I have it easy now with no mortgage & no bills
  3. marionq

    marionq Registered User

    Apr 24, 2013
    Oh Lord you are right in it! Try to be less of a superwoman if you can or you'll burn yourself out. Look hard at all you are doing and assess the effect it might be having on your health. Take remedial action!

    Very good wishes.
  4. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Oh goodness SL. I can only echo what Marion says. I hope it helped on some way to share here.
  5. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    East Sussex
    Thank you :)

    I'm no superwoman honest, I've set some ground rules & I will do my best to keep to them (remind me of this next year)!

    I joined a gym, I was given a "carer grant" & that paid over half the years membership, mum offered to pay the balance, so I found a friend to train with which helps

    I've ask taken on a volunteer admin role for 10 hours a week, it gets me out the house & keep up some skills too. I love working, so it works well for me

    I also visit my youngest every 3 weeks, it's not an issue with leaving mum atm, but I've said I'll still be going, we will have to make arrangements when the time comes. I tie in a drop in visit to a friend on the way, it breaks the journey & keeps me in touch

    My greatest achievement however, has been getting a cleaner in twice a week, increasing to 3 times as if next week. Not only do I get out of hoovering & bathroom scrubbing, but we've also become friends & I now go out every couple of weeks for a girls night of bar stool rocking!!!!

    Finding TP has been a life saver. I feel this is somewhere I can be honest about how I feel, without it getting back to those I love

    It's early days for me, both with mum & the disease, so I'm coping ok, but I'm trying to plan ahead by putting things in place gradually for the future

    Thanks for listening, it means a lot :)
  6. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    East Sussex
    Hi Izzy

    I'm a talker, I need to explain it "out load" to make sense of it, so yes, it helped to put it down on paper so to speak

    I hope to mix in the funny with the ranting, it will help remind me it's not all doom and gloom.

    We do have our laughs & I do tease her, it breaks the tension & works for now. I'm sure I'll be trying many things over time & stealing lots of ideas from you here

    I've been reading on here until my eyes ache, but learning all the time. Hats off to all of you who have been doing this for so long, especially those at a for more advanced level than I am dealing with

    Better get myself to work before I'm late :eek:
  7. Risa

    Risa Registered User

    Apr 13, 2015
    Sounds like you have achieved so much in such a short time :) All I would say to you Sam is to take every scrap of help you are offered and if your Mum doesn't already go to daycare, get her used to going asap as this will give you much needed breaks. Look after your own health and smack any 'friend' upside of the head if they tell you how "easy" you have it :mad:
  8. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    East Sussex
    Hi Risa

    I think the hardest part is finding out what help there is :(. I'm a numbers person, mum was the nurse, so it's all new to me

    I think it's sad, this is the one thing she always said, please don't let me get that. She was a TB nurse, then dementia nurse. So she really does know what to expect. She would be my "go to" person for anyone else on this, but I don't feel it would be fair to ask her about her own future :(

    I've laughed at some who said I have it easy, but was not in a brilliant mood with one person, so looked at them & said ... "Yeah, right. I have no home. I have one room instead of my 4 bed house. I have to ask permission to invite anyone in. I'm on call 24/7. No weekends, no slobbing in front of the TV if I feel unwell. Want to swop". They apologised lol

    On the plus side, I don't have to get up at 6am at the moment, so that's good :D
  9. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    East Sussex
    The "Supportive" Brother

    Holiday Time :D

    Last year I went on holiday with a friend. Cheaper than going alone & company was good to have

    We did it again this year and I'd like to see if I can keep doing this, but I know there will come a time when neighbours, friends & occasional family visits will not be enough

    I shopped, cooked & froze meals, crossed my fingers & went. I phoned home every night & all was well

    So, planning ahead, I spoke to my brother, he lives 5 miles from mum, or a 5 min walk either side of a 4 min train journey. So not exactly far.

    He is self employed, in IT, works about 20 hours a week, much of it from home. Mum has fibre, so internet connection is good

    I told him he is going to need to plan for one 2 week period when he looks after mum. Staying overnight. I don't care how he sorts it, but he needs to think about it

    His response ... "Put her in a home if you can't do it"

    I'm disgusted at him.

    Think he knows too.

    He's been a bit more supportive since that conversation, but I can't believe that's his attitude

    You can bet your bottom dollar he'll be there hand out for half the house when that comes up

    I've not been as quick to defend his lack of visits to mum since then, but I do still push him to visit as she so loves to see him

    I do love my big brother, but I could cheerfully strangle him at times :confused:

    Why does it seem to fall to one family member?

    At least I can look myself in the mirror & know I did the best I could, or try to :D
  10. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Sam Luvit, hello and welcome to TP.

    The term here on Talking Point for the family members who do nothing and don't help (and often live closer than the person doing the caring) is "invisible" or "invisibles." They don't help, often hinder, but are quick to show up when the estate is being divided up. So for what it's worth, you are not alone there. (And yours is another story making me glad I'm an only child.)

    So sorry to hear about your invisible brother. In addition to not helping, it sounds as though he has his head firmly stuck in the sand regarding your mother's condition. Doubly unhelpful for you, I'm sure.

    I wonder if it might be time to get things moving on assessments, to start looking at possible carer visits, day care, that sort of thing? Forgive me if you've done this and I missed it in your posts.

    Sending best wishes to you and your mum, but not to your IB (invisible brother).
  11. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    East Sussex
    Hi Amy in the US

    I like that!!! The IB, especially as it's an abbreviation for Irritable Bowl lol. Both if which are feeling quite apt right now :D

    I've not done anything about Carers or assessments. I thought that would be when she's much further along? I've got a cleaner in, massive step & she went through 3 before settling with this one. She decided she wasn't having one & I told her I needed the help, so she was having one!!

    Mum was diagnosed "early stages" about 18 months ago. She is more forgetful, forgets words & mixes it up at times. I struggled when she was looking for her contacts, she'd not worn them for about 10 years & I really thought that was what she wanted. Spent a while asking her why, with her getting more and more cross with me, until I realised she meant hearing aid!! We laugh about it now when she can't find her contacts!!

    When should I find out about assessments? What are they? Her doctor was not helpful to me when I asked about support for me. Told me to look on line :confused:

    Day care, hmmmm, can't see her agreeing to that in a hurry, but is respite something I can ask for so I can go on holiday?

    I really am out of my comfort zone in this. More than willing to look, if I know what I'm looking for

    I sort of assumed mum would be called in by the doctor to see how far it's progressed, rather than I have to ask for it? Guessing that was definitely making as Ass out of u and me lol

    Feel free to nudge me, I need it :(

    Thank you for the suggestion :)
  12. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    I think the general advice is to get the assessments and be ready to put things into place sooner rather than later.

    As I'm unsure about the UK system I will have to leave it to someone more expert than me to tell you how to begin that process, although I'd bet that you could contact Age UK and/or the UK Alzheimer's Society and they might be able to tell you whom to contact.

    You do want to make sure you're taking advantage of anything and everything to which your mother, and you, may be entitled (like council tax exemptions: don't pay more than you have to, carers allowance, attendance allowance, etc). You may also learn about what services are available in your area, which is always good to know, even if you don't use them.

    It's also often easier to introduce help (carers or whatever) earlier rather than later, even though you may meet with some resistance. Many people here on TP comment that they wish they had done this ASAP. It was smart of you to insist on the cleaner, and use the "I need the help" argument.

    Finally, I hope you already have PoA sorted; if not, I'd start there.

    Good luck with that Invisible Brother/Irritable Bowel of yours!
  13. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    East Sussex

    Thank you, again :)

    LPA done, AA awarded (higher rate), Blue Badge (disabled parking) awarded, Carers Allowance(that's a bit if an insult :confused:), but I guess it helps, CTax exemption applied for, they returned the forms & it's now lost, so start that again :-(

    I've found a Carers support group, attended my first meeting last week. I think I felt better for seeing others in the same boat, although I was about 15 yrs younger than the youngest :). It's only once a month, but they told me about TP, so worth it :)

    Bless him, my IB isn't shy about asking me to help him out :rolleyes: , he's just asked me if I can drop a laptop off to a client, he'll cover my fuel. Isn't he a darling :eek:
  14. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    East Sussex
    You Have to Laugh

    For at least the last 18 months, the kitchen scissors have lived in the right hand drawer in the kitchen.

    However, recently they can be in the left or the middle one, in the utensil pot or anywhere to be honest

    One evening, I'm hunting for them & mum asks, what am I looking for.

    The scissors says I, you know the ones in the right hand drawer

    Mum marches into the kitchen, opens the left hand drawer saying, "see, there they are, in the right hand drawer"

    Arrrrh, the other right hand drawer!!!

    We had a giggle over it, but is it any wonder I can't find anything?

    Bless her :D
  15. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    East Sussex
    Lack of Planning

    My excuse .... I'm tired :-(

    It's been a long day at the end of a long week, so I suggest "**** TV" & select a film

    Wesley S, turns out I've seen it, but hey ho, mum is settled ...

    An hour into the film, mum says she's seen it before, but happy to watch to the end. Co star dies

    It's still early, so pick another film, pure flick, it's another Wesley S .... with the same constraint

    I'm waiting for her to ask why the coz star is alive, when we just saw him killed :-(
  16. Spamar

    Spamar Registered User

    Oct 5, 2013
    My advice echoes that of Amy. Get mum used to daycare, befrienders or whatever else you can find. She might not be keen, but is probably still open to persuasion! Later on, it may well be a different story and you will be stuck!
    If brother doesn't want to look after mum, tell him he's paying for respite! That'll open his eyes!
  17. Katrine

    Katrine Registered User

    Jan 20, 2011
    While in no way excusing your brother's head in the sand attitude to the way your lives have changed, I can see his POV regarding hands-on caring. If he knows he can't or won't do it, then he's being straight with you about what he's prepared to take on. Far worse are those invisibles who back out of arrangements they only made to stop the carer from nagging.

    To ask a man to look after his mum raises the uncomfortable issue of personal care: dressing, washing, toileting and/or prompting, and perhaps incontinence. Yes, many men do this, but I don't think anyone should be forced to.

    My mum lives in her own home with live-in carers. Some years ago my brother was visiting. He loves her dearly. Although he only came to the UK 3 times a year he sent her postcards most weeks and phoned her twice a week. He very kindly said to the carer in residence, why don't you take the day off? She replied, that would be lovely, but do you know that your mother needs assistance in the toilet and wears incontinence pads? Would you be able to wash her and change her clothes if needed?

    My brother looked horrified and said No he couldn't deal with any of that. Like many people, he thought her dementia was just forgetfulness and confusion, so that she needed someone to run the household. He hadn't considered that she had physical support needs because she could still walk and talk reasonably well.
  18. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    East Sussex
    Hi Katrine

    Thank you, at least he isn't promising and not delivering!! That would be my eldest son, but I can recognise the body language when he says yes & means no :mad:

    Thankfully mum is not at the personal care stage, TBH I will be sorting Carers for that aspect when it arrives, at least I hope to. I wouldn't ask my IB to do that!!

    ATM, mum can't cook a meal properly, never the best cook, but now the meat will be charcoal & the spuds & veg just going on :confused: So I was meaning for him to be around as company, getting the shopping & cooking an evening meal. (She makes microwave porridge herself in the mornings). Also sending her to bed, as that is a nightly battle, she will not go before 11.30 & often later & I can't go till she has, so it makes for a long day:(

    She gets anxious, so having someone there is getting more necessary, I visit my son every couple of weeks, with an overnight stay & she is coping, (with me phoning home a few times), but I can see that will change & want him to pop over & spend an evening with her. He lives 2 miles or a 4 min train journey away, so not difficult for him

    I have forced him to visit more & took him out to dinner with us last week, I think that opened his eyes to level of selfishness she is now showing :(

    I know she is no where near as bad as some of the stories I am reading on here, I'm on a steep learning curve, I'm sure I will look back in a year & agree that I didn't know I was born at this stage, but it's new to me. That said, I'm a planner, so I'm trying to get things in place now, that I'm fairly sure I'm going to need in the future

    I will have to look for a plan "B", as the brief visits to my son do help keep me focused :)
  19. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    East Sussex
    Hi Spamar

    :) the idea of getting the golden boy to dig in his pockets for that sort of money made me chuckle, I think he is going to be speechless when he finds out the cost of respite :eek:

    I had hoped the cleaner K I arranged would work out as a break for me to go out, mum really likes her & it was going well, but K has been less than reliable for the last few weeks & mum is getting a bit fed up. Hope it sorts itself out, as she went through a few before settling on K :(

    I think DC is not going to even get discussed ATM as mum is still active, I got her a small dog, Scruffy is a Bischon X Terrier & adores her & mum walks him round the block each day, chatting with neighbours etc. I am looking into Singing brain (??), to see if I can suggest & arrange that as a start.

    I do appreciate the suggestions and know it will come, it's just that as mum was a D nurse, she also knows what to expect, which seems to make it hard for her to accept. If that makes any sense.

    I'm presently pushing her to go to her GP, for an update, she was diagnosed "early stages" about 18 months ago, I didn't know there were "scores", so no idea of where she was or is on the scale now. She generally wants me in with her, so hope it will be the same this time :eek:

  20. Spamar

    Spamar Registered User

    Oct 5, 2013
    Hi Sam. I don't think the actual stage is much use, it's more how they are at the time! I was always amazed at stories about pwd phoning the poster multiple times a day, OH couldn't use a phone from before diagnosis!
    I found I had to deal with each change as it happened. Usually when I thought, well got they sussed, it's not so bad after all. Then, bang, another change. Keeps you on yourself your feet, this caring!
    Keep strong!

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