1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. BBJ1959

    BBJ1959 Registered User

    Aug 11, 2019
    12
    Male
    SUFFOLK
    #1 BBJ1959, Aug 13, 2019
    Last edited: Aug 13, 2019
    Just need to get things off my chest, My wife of 10 years had Alzheimer's confirmed in April but had had noticeable memory problems since 2016.

    Just after we married my wife's work took us from Essex to Bristol she was a Bio-medical scientist with the blood service and the start of a great new life, this was early 2010 but by the end of 2016 my wife's memory problem made her work very difficult to continue so took early retirement at the age of 58 we are both now 60.
    She had had a diagnosis of a minor cognitive impermeant but we noticed her memory getting worse and by the end of 2017 we decided to move back closer to our families in Essex and moved to Suffolk a year ago.
    We are around 75 mins form most of our relations with a quieter way of life than Essex with lots of great walks which is one of our must haves and property prices that meant we didn't need a mortgage.
    Just before last Christmas we made the decision that I should stop work, I was self employed and delivered artwork and antiques around the country and my wife would join me as by then she was finding it very hard to look after herself but this had to stop because she had a few panic attacks while I was driving and it was just to dangerous to carry on working.

    But we are enjoying our life to the full maybe in a different way that we thought we would but that's ok.

    Our main worry and something that we both find upsetting his my wife's two grown up sons from her previous marriage, They knew of her earlier MCI diagnoses and things was getting worse but the contact between them and their mum was minimal, we understand that some people bury their heads in the sand and can't face the problem but anytime they needed something they had no problem calling her or turning up on the doorstep because the child minder was ill etc.

    One son took his wife and children to a Center Parcs which is around 10 mins from where we now live, he had told us that they would be there and that they would visit which they did, late on the Friday afternoon on their way home and had to rush off to beat the traffic which upset my wife greatly.
    Her other son had arranged to visit with his children on a Sunday but forgot (his words not ours) by this time my wife's Alzheimer's diagnosis had been confirmed, but hard has we tried we couldn't tie them both down for a get together so we informed them by text. They both got upset when we explained how little contact they had had with their mum and tried to blame us for this.

    We asked to see them both at our home or anywhere/anytime that suited them, but it was three and a half weeks before they could do this.
    We then sat down with them and explained about how Alzheimer's affects their mum and they made all the right noises at the time but that's all it was, noise.

    Things went ok for around a month, then my eldest (late 30s) stepson drove her home from a family get together 4 weeks ago then nothing since, he has sent me a couple of texts when I had a heath scare 3 weeks ago but not once did he ask "how's mum".
    The younger stepson (mid 30s) made arrangements to visits 2 Sundays ago but arrived two and half hours late (on a 65 mile trip) blaming his wife, since then nothing.

    I'll stop now because I don't want to bore you all to much.
    John
     
  2. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    716
    Male
    Newcastle
    #2 northumbrian_k, Aug 13, 2019
    Last edited: Aug 13, 2019
    I am sorry to hear this but it is a familiar story. I could say much the same about my wife's son. The key consideration is how much this affects your wife. If not seeing them bothers her then it may be worth encouraging them. If not, just accept that is their choice. At some point - perhaps when it is too late - they might realise what they have lost.
     
  3. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,833
    Nottinghamshire
    Welcome to DTP BBJ1959.

    I'm afraid it is common, and in my opinion, inexcusable. My siblings were exactly the same with both my parents and the more ill they became the less they were around to help. It caused a lot of bad feeling in the family. I still haven't forgiven my brother (my dad died 8 months ago). But nothing I said ever made them step up to the mark. He never asked how dad was or how I was coping.

    In the end I just gave up. It was easier to expect nothing.
     
  4. BBJ1959

    BBJ1959 Registered User

    Aug 11, 2019
    12
    Male
    SUFFOLK
    It bothers her a great deal and if it bothers her it really bothers me and I think I'll have one last go.
    I've a 19 year old nephew with Autism who checks on my wife more than her family.
    I'm writing this sitting on our deck with Rada (my wife) just relaxing and life is good, if they want a part of that, all well and good if not it's their loss.
     
  5. BBJ1959

    BBJ1959 Registered User

    Aug 11, 2019
    12
    Male
    SUFFOLK
    Sorry to hear you had a similar situation, I've known for sometime that in different ways they are both selfish and I can deal with it because at some point they will need something from me and I'm so looking forward to that day.
    I wouldn't call my family close but we are always there for eachother, obviously not all families are the same.
     
  6. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    348
    Sheffield
    It’s a good job she has you because they sound a useless pair! Would they look after her if she was on her own?

    I have 2 grown up step children who never visit either. My stepson came 2 years ago to see him on his birthday. He lives about 20 miles away. My stepdaughter we saw when we visited her 3 years ago. She lives 3 miles away. She rang him up on his birthday last September and he couldn’t remember who she was! We do have a daughter together and we see her regularly, she lives about 12 miles away.
     
  7. BBJ1959

    BBJ1959 Registered User

    Aug 11, 2019
    12
    Male
    SUFFOLK
    Thanks Guzelle, sorry to hear that your having the same problem but in a way, much worse has they are so close.
    When myself and my wife got together around 2 months ago with her sons, I thought we had sorted the problem but how wrong I was.
    The eldest even asked to come along when we next see her consultant on the 20th of this month so he could understand her illness better but since bringing her home from the family picnic nearly a month ago, the contact has been zero.
    I think he is just trying to make it look like is mum is important to him, on that last occasion when he brought his mum home he spoke to me and said what good news it was that we had finally got Rada's PIP confirmed a few days earlier but if we needed any money just ask him.
    It had taken 3 months to sort out and he offered AFTER we got it.
    We had never been in any money trouble and never will be.
    A close friend suggested that I contact both sons and say "your mum could do with a phone call" my wife doesn't like that idea because like me she is a proud and independent person and "isn't going to beg her sons to call her"
    John
     
  8. Normaleila

    Normaleila Registered User

    Jun 4, 2016
    653
    Hi. I'm sorry to hear that this is, understandably, upsetting you and your wife so much. I can't advise on the situation except to warn you that further down the line they may start to interfere, after being 'invisible' for so long when they were needed.
    If you haven't already done so, it's time to arrange Lasting Power of Attorney for health & welfare, and for legal & financial decisions.
     
  9. BBJ1959

    BBJ1959 Registered User

    Aug 11, 2019
    12
    Male
    SUFFOLK
    Thanks Normaleila, my wife got me to short both the powers of attorney last year.
    I get what your saying, my eldest stepson has asked about my wife's work pension, which has nothing to do with him and we told him so.
     
  10. Philbo

    Philbo Registered User

    Feb 28, 2017
    647
    Male
    Kent

    Hi John

    So sorry to hear about your difficulties.

    I've been caring for my wife (PWD) for over 5 years and things recently took a turn for the worst (see my post Respite Woes).

    For me, it's not about our two sons, who have both been great, but nevertheless, deal with the situation in slightly different way. My issue has been with how her siblings have responded. My wife is the eldest of 3 sisters and 1 adopted brother. The middle sister lives nearby and has been very supportive, although slightly less so since her husband passed away, which I understand. The youngest sister lives around 100 miles away and their relationship has always been a bit stretched. I think she really cares for my wife but they are really self centred around their own family (their 2 kids and grand-kids all live near each other), which I do get.

    Even before my wife's diagnosis, we didn't get to see them very often but in recent years, maybe only 2 or 3 times a year. Maybe it's their way of dealing with it but I get upset on behalf of my wife.

    My Respite Woes thread details how I've just returned from holiday to find my wife was hospitalised from respite with a UTI, which has severely affected her mobility. She returned to the care centre today for a period of assessment and it seems very likely that unless she can be rehabilitated, she may need permanent residential care, which will break my heart.

    The sister didn't feel they could call in to see my wife (on route back from their holiday) as the hospital ward has some restrictions due to a possible norovirus problem. Meanwhile, friends from the pub have all been in to see her!

    I guess like many others on this forum, I have developed a thick skin but as I sit here in the house on my own, life can feel very lonely. I am just grateful that my wife is blissfully unaware and in her own happy place.
     
  11. BBJ1959

    BBJ1959 Registered User

    Aug 11, 2019
    12
    Male
    SUFFOLK
    Hiya, sorry to hear about the hard times you are going though and yes families seem more of problem than friends.
    Although my main problem is with her sons, my wife's 3 sisters and 2 bothers are not that much better.
    They do have a big family get together once a year and a bother took her out for the day 5 weeks ago they think they are doing enough.
    Her other brother who we visited over 2 months ago who lives 200 miles away hasn't once called her or me since we visited.
    When I had health scare 3 weeks ago one of her sisters asked if I tried to get some resbite care for Rada to give me a break, I was quite taken aback by this, there are 5 siblings but they would rather their sister is looked after by strangers.
    My wife can still look after herself in many ways, but I know it will become harder for her and me has her condition worsens and Rada knows this too and it scares her.
    We have sorted what would happen in an emergency with my siblings because Rada and myself trust them to do the right thing.
    Hope things turn out ok for you and you can share your house with your wife again soon.
    John
     
  12. Lawson58

    Lawson58 Registered User

    Families and money - what a woeful combination they can be.

    You have my sympathy and understanding about your issues with your step sons. I too have 2 stepsons who live on the other side of the world and of course I never expected them to be visiting their dad too frequently.

    However, one son has not spoken to his dad for several years and the other refused to continue any contact some months ago, and all over money, our money that we need to maintain our life as we age. Right from the start of our marriage, our wills preoccupied the two boys and to them I am the wicked step mother who stands in the way of them getting their hands on what they see as their money even though we are not dead yet.

    His siblings are very supportive and appreciate the care I have been giving him over the years but his sons have never come to grips with his AZ, heart failure and other health issues. It's a battle I can never win so I have given up. The agitation and disappointment my husband feels about this is distressing for us both so for the moment, we just don't mention them.
     
  13. big l

    big l Registered User

    Aug 15, 2015
    28
    It's heart breaking. If only they could see past their denial - (i e.- stop burying their head in the sand) and see their parents as in need of support. Just over the phone would be wonderful - (but what's the point when you've had to ask?) Our son lives just across the field and is good. He visits his dad every week and takes him out for a couple of hours - and tells me I'm doing a grand job. But practical help for me? No. - he doesn't see the need as... I'm doing a grand job! Our daughter? three miles away (yes, three) has visited (since Christmas) each time for a watch-checking hour if we're lucky - (she's so tie up) 1. Mother's Day. 2. Easter Sunday. 3. Father's Day. 4. My birthday (July). 5. one brief, unannounced visit. She's busy and anyway - I can leave him on his own for a short while whilst I go out can't I?..... AGH!!!!!! Denial is the cruellest thing. What would happen if I decided to go down the denial line?
     
  14. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    371
    Female
    Basingstoke, Hampshire
    My daughter lives less than 10 minutes drive away. She brings her twin sons to see us usually about once a week or sometimes if she's busy it may be every other week.
    As she has the twins car seats in the back of her car she can't take both me and my husband (PWD) out together. Never has she offered to take her dad out in order to give me a break.
    When she comes she never asks if I need help with anything. She has in the past told me that I need to tell her if I need anything.
    I think she sees me as coping with everything and she prefers not to interfere. I know she doesn't like me to talk to her about how things are. I think she struggles to accept what has happened to her dad.
     
  15. Thethirdmrsc

    Thethirdmrsc Registered User

    Apr 4, 2018
    61
    What an interesting thread, that this cruel disease doesn’t bring families closer. I have asked both my husbands sons, one of which is 3 mins away, to call or pop in just once a week, but no. They don’t see the anxiety or the sundowning episodes, and are just not interested cause I am “coping”!
     
  16. BBJ1959

    BBJ1959 Registered User

    Aug 11, 2019
    12
    Male
    SUFFOLK
    This is just how things are with my wife's sons, they do visit but not that often and never see the bad days which are most days, because my wife still manages to put on her happy face when we get visits from friends and family but that's something that is not going to last.
    So they only see her at her best but never the lady who has refused to eat or demands her bath/shower at 4am. They only see the lady who repeats herself and never seem to want to know about her bad and very bad days because like "I'm coping"
    John
     
  17. BBJ1959

    BBJ1959 Registered User

    Aug 11, 2019
    12
    Male
    SUFFOLK
    Hopefully I'm wrong but it seems that my wife's family are doing the bare minimum, her 3 sisters visited last week and my wife had a great few hours and I was meant to join my best mate for lunch but my wife got fretful that I'd not be there so I cancelled, her sisters stayed about 2 and a half hours and off they went and not one word to me on me not going for lunch (they knew that was the plan) or asked how I was? families hey lol.
     
  18. PalSal

    PalSal Registered User

    Yes, but sadly this is just the way....eventually the family will not be able to deny the situation, I found in the early days it was just too scary for family members to accept.Eventually they found acceptance. I found that it is just harder for us as the carers because the person in the early stages wants to be as normal as possible with those not so close to them and also the whole "hosting" thing.
    Our spouses and partners are human beings, they want to appear as normal as possible to their friends and families which makes it very difficult for others to understand exactly what we are living with as their carers.
    Believe me 17 years into this....no one is questioning what I am living with. I am truly blessed because I am very supported by family and friends. In the beginning (and for many years) that was not always way my experience. It was very hard for me that no one truly understood the nature of living with a mentally demented individual...people would love to comfort themselves that it was just a bit of poor memory and confusion not a big problem. That was why I was so grateful to find TP in 2011.
    The sad inevitability of the our situations is that eventually (sometimes quickly ...sometimes, as in our case gradually) people become aware of what we are living with on a daily basis. The good friends and family will be there for you.....others will fall away.
     
  19. Lellyhelly

    Lellyhelly New member

    Jul 27, 2019
    8
    I have one sibling, a brother, who lives 200 miles away. Since Mum was diagnosed with AD he and his wife have visited her for one day twice a year. Their 2 adult children haven't put in an appearance for some years. I invited them all to my 70th birthday party, a special occasion for my adult children and close friends and family, as I recovered from breast cancer. They didn't attend as 'there was no one to care for the cats'. The same excuse was given for our mother's 90th. They told me, also 'well it's just another day after all'. I can't help feeling that it would have been lovely for Mum to have had all her 5 grandchildren together, probably for the last time. Mum is in a care home now and doesnt always know who I am. It is hard, but I think, for our own well being, we have to accept that these selfish people will never change and just carry on doing our best. Good luck.
     
  20. BBJ1959

    BBJ1959 Registered User

    Aug 11, 2019
    12
    Male
    SUFFOLK
    Thanks to all that have read/replied to my post, I now know I'm not alone with this "family problem"
    The latest update, last Weds my wife's 3 sisters visited and my wife had a great time with them.
    A few days before the visit my wife had asked me to ask her sisters why they never phoned because she feels a bit left out of the family, my wife doesn't always remember when someone has called her but she knows, I know and when she asks me I always tell her the truth.
    When this was put to her sisters they said "of course, you only had to ask"!!!!!!!!!!!
    I also asked them if my stepsons have always been such selfish Bs, because it seems they have a problem keeping in contact with their mum, one sister said she had spoken to the wife of the eldest son and was told they had tried to call often but my wife was unavailable or there was no answer to the call, which is a total lie but I don't understand why she would lie, but I will ask them next time I see them lol
    My mobile is the contact number for my wife and it's never switched off, it's with us 24/7, I never clear the call logs or texts etc, so even if we have a siesta we know we have missed a call.
    Hopefully over the next few weeks we will know who we can count on and who to cross off our Xmas card list lol
    John
     

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