1. Expert Q&A: Living well as a carer - Weds 28 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 Wednesday 28 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.

How long have you been a carer?

Discussion in 'I care for a person with dementia' started by CeliaThePoet, Jan 22, 2016.

  1. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,720
    Male
    Bristol
    Like Selina it was a gradual thing over, in my case, about two and half years then full time for about another two and a half years. That probably makes me a novice at all this.
     
  2. Adcat

    Adcat Registered User

    Jun 15, 2014
    290
    London
    What a good question. I'm not sure how it happened. I was caring for my mother she had cancer. I thought Dad was ok, taking into account the first awful year of bereavement. He wasn't though. Diagnosed in 2014. All in all I guess since 2009. It creeps up on you. I now live with my dad in his house. I work full time and have private carers while I'm at work. I'm terrified about the future. Dads money will run out.the house will have to be sold. I don't own my own. Financially I'm stuffed. My siblings are a disaster area. I'm not sure my friends really understand.
     
  3. Hair Twiddler

    Hair Twiddler Registered User

    Aug 14, 2012
    879
    Middle England
    #23 Hair Twiddler, Jan 23, 2016
    Last edited: Jan 23, 2016
    Carer?
    According to my mum a few days ago, I'm an interfering busybody.
    To be truthful....she has called me worse.

    I'm 53.Mum is 89 years old.
     
  4. Louby65

    Louby65 Registered User

    Mar 26, 2014
    620
    Scotland
    I have been my mums carer for nearly 27 years following a stroke ( aged 58) . My dad died 23 years ago which made me sole carer . She was then diagnosed with vascular dementia but we muddled through until nearly 2 years ago following a hospital admission which has now resulted in her needing round the clock care , so I know employ a personal assistant to look after my mum when I'm working . It's hard but I wouldn't have it any other way , if I can manage . Lou
     
  5. Dimelza

    Dimelza Registered User

    May 28, 2013
    130
    #25 Dimelza, Jan 24, 2016
    Last edited: Jan 24, 2016
    I've cared for my dad since 2007. He suffered a stroke during a hip replacement operation and was diagnosed with mixed dementia 4 years later after a long hard battle! I worked part time back then as my youngest were only 2&4 but started working full time in 2012. His needs became more acute in October 2014 so I added a carer at lunchtime.
    We moved house early last year to accommodate dad in an annex with us and he moved in September once it was ready but sadly started having more strokes despite medication and has been in a care home since 26-10. He's now receiving end of life care.
     
  6. Bikingbint

    Bikingbint Registered User

    Jan 18, 2015
    18
    Mum moved into my house when my dad died in March 1991, as time progressed changes occurred. Mum moved into care in March 2015. So to answer the question a very large chunk of 24 years.

    When I see it written down, I wonder how I managed for so long. I am so lucky to have a wonderfully supportive husband.

    Bikingbint
     
  7. Boldredrosie

    Boldredrosie Registered User

    Mar 13, 2012
    237
    I'd say nearly all my life as my mother who's now 85 (I'm 52) has always been ill in some way or the other but very hands on for the last 10 year.

    My mother and father have lived with me since 2005; my father died in 2012 and was extremely ill for the preceding year. My mother was diagnosed with dementia in 2010 but definitely had the condition way before that. It's only now that I'm so much older that I realise she's always been mentally ill and our family life was always adapted to accommodate her illnesses -- physical and mental.

    I am exhausted
     
  8. Ellaroo

    Ellaroo Registered User

    Nov 16, 2015
    161
    Liverpool
    Mum who is 90 has been living with me 7 years because of dementia. Did shopping cleaning etc for 3 years before she came to live with me. My husband died 2012 of cancer and cared for him at home .
     
  9. Doghouse

    Doghouse Registered User

    Dec 30, 2015
    15
    Folkestone, Kent
    Mum was diagnosed on 30th December 2015 but things had started to not seem right in May 2015. She has mixed dementia and her decline at the present time seems rapid. She has carers 3 times a day and I go to her every day after work. She was widowed 15 years ago and is 69.
     
  10. Emac

    Emac Registered User

    Mar 2, 2013
    172
    Mum was diagnosed with dementia aged 68. She is now in her 9th year. Prior to that she suffered from depression for 18 years or so. She lived with Dad with Home Care visits, respite weeks and a couple of days per week daycare and some help, (emotional, respite personal care etc) from my sister and I until September 2015 when Dad declared he could no longer cope. Now she is in a care home and hates it.She's late middle stages but lucid enough to know what has happened to her. I see her a couple of times a week and keep in contact with the CH attend meetings, sort out her clothes and other practical stuff. My sister shares the load and we try to give Dad some support too. He's so far relatively fit but lonely without Mum. Not sure I am a carer, I probably spend more time worrying about Mum (and Dad) and wishing I could make them happier and worrying about what comes next (exhausting and pointless) than actual physical caring. I stand in awe of all the forum members who have been able to care for family members and loved ones at home for many years some of you right to the end. This is such a long term illness it's like running an emotional and physical marathon for years on end. The end of the race brings relief but at the price of more pain...and there's the constant guilty feeling that you should be doing or have done more.
     
  11. little shettie

    little shettie Registered User

    Nov 10, 2009
    218
    Wow, having read the first post, then all the comments from others, I am in awe of you all. Its only when you see it written down, that you realise all the years that have gone by, all the years we have watched our loved ones deteriorate before our eyes. Emac hit the nail on the head about feeling guilty. I do all the time and I've no idea why. I cared for my Dad when he had a heart bypass 8 years ago. He had other health issues and really after this, he struggled in so many ways. Then when mum was diagnosed with AZ 6 years ago, I became her carer too. Ran their lives,, the house, the finances until we lost Dad in 2013 and mum just went into oblivion. I couldn't bear to see her like it, the falls she had at night whilst alone, the phone calls in the early hours from her crying wondering where dad was. In the end my kind and very supportive hubby agreed that mum should live with us. We sold our house, her house and bought a bungalow. 18 months later we are in a routine but life is changed. No longer have the freedoms we enjoyed for example, going off for long weekends when we felt like it. Mum is 95 and apart from the AZ is physically fit and belies her years. I'm 52, feel more like 92 at times. But I feel I have it easy compared to some of you and I really admire you all for what you've been through and continue to go through. That alone will keep me going. Love and hugs to everyone xxxxxxxxxxxxxxxx
     
  12. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    1,127
    eastern USA
    I began caring for my mother around 2000, when I realized she was not shopping properly. When I visited (she lived 3 hours from me), I'd cook up a storm and leave her with leftover dinners that would last a couple of weeks. I'd take her shopping and unpack the food for her. I'd clean her house. Then by about 2003, I bought her a freezer and started making little meals for her that I'd take over monthly. I'd clean her house on those visits and take her anywhere between 25-40 little packs of meals that I had made myself and frozen. By 2006, she wasn't keeping her accounts very well, so I started also paying her bills for her on those trips I'd make with food for her and when I'd clean. And finally in 2008, I said I'm really busy this year (I work full time; I'm a professor at university), how about coming and trying to live with us. She stayed for close to 11 months that year and then in 2009 had a seizure right in front of us. The Alzheimer's diagnosis came then. She has lived here since 2008. And I've been her primary caregiver all this while. We started hiring assistance in 2013.

    I would like to add that I had a sister who lived in my mother's town who said to us, her sisters, that she was taking care of our mother. But she was not doing so. Sometimes people just are not able or willing to take care of others. There is no crime in that. But I wish we'd known much sooner about my mother's real situation, as we could have had the diagnosis sooner, and she'd have moved here sooner, and she might have been able to make some friends here. As it is, at the time she moved, and since then, her socialization has been entirely dependent on us. She is doing well. This year she will have her 98th birthday.
     
  13. Goingitalone

    Goingitalone Registered User

    Feb 11, 2010
    1,685
    I have been a sort of 'family carer for years, having family members with various mental illnesses. Mum was diagnosed with vascular dementia about 8 years ago but I had been caring for her a couple of years before diagnosis. She spent over 3 years in a care home and finally died at age 91 in November 2014. Shortly before Mum died MIL was diagnosed with the same disease and so I am doing the same thing over again. I barely had time to sort out Mum's affairs before daily looking after MIL. My younger brother has Schizophrenia and I cared for him whenever Mum couldn't cope.
    I am 63 years old but today I feel 80!

    I am fortunate in having a very caring daughter to take up the slack and a supportive group of friends.
     
  14. hvml

    hvml Registered User

    Oct 10, 2015
    300
    North Cornwall
    I took voluntary redundancy from work and relocated to Cornwall in April 2012 when my dad had a stroke. He had been showing symptoms before this, but the diagnosis confirmed vascular dementia. I have been his primary carer since then, taking one weekend a month to spend with my oh, who stayed in the city. These 4 years have flown by and my dad has declined fairly steadily. My brother and his partner moved in with Dad too when he had the stroke, but have both continued to work full time. We have agreed that my brother will take over the caring role in April of this year, to enable me to go home, so I am gradually taking my belongings back and getting geared up to look for work. It's going to be really hard to leave Dad, as we have a good routine and are very close. On the other hand, it's exciting to think that I will be able to start up my own life again.

    I'm 47 and Dad is 90.

    Xx
     
  15. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,293
    Cotswolds
    #35 Lindy50, Jan 26, 2016
    Last edited: Jan 26, 2016
    Well, as others have said, I am incredibly impressed by the care, compassion and sheer hard work demonstrated on this thread!!

    As for me, To a greater or lesser degree I have been the family carer for over 40 years. It began on my 21st birthday, when dad was admitted to hospital, dangerously ill. He never fully recovered and had numerous illnesses after that, so needed a lot of help. Mum was his main carer, with me supporting practically and emotionally. It knocked the stuffing out of her really. I properly became 'mum and dad's carer' 16 years ago, when dad told me he didn't have long to live, and that mum would need my help. He lived a further three years after that, as it happened, mentally alert but in great physical distress. He cried most days, and often asked me to help him 'end it all'. Dad passed away in spring 2003.

    I have been mum's carer since then. She live alone in supported living at first, but needed more and more help. The dementia came on slowly at first, then accelerated fast. She relied on me totally.....well, we had a pattern that went back over 40 years, since dad first fell ill. She was desperate for me to give up work, and as soon as I did, her needs became much more apparent. The three years from 2012 to 2015 nearly gave me a breakdown. I was totally exhausted when mum finally went into a care home in August last year. Five months on, I am just about coming round from it all. And of course, it's not over yet.....

    Thank goodness for a supportive husband and two lovely daughters. It's a miracle they haven't given up on me at times.

    I am 65 and mum is 94.
     
  16. Beetroot

    Beetroot Registered User

    Aug 19, 2015
    363
    To a greater or lesser degree from the mid nineties with few gaps.
    Step mother in law with vascular dementia - part of family effort, my bit the occasional visit and all the finances for 16 years, but she lived in a home and died aged 98.
    Mother in law, who lived 250 miles away, mentally fine, but physically poor for seven years. I was working long hours full time and she had very good carers in two or three times a day. We regularly visited (many a time we got stuck on the M6 in the middle of the night) to take her out and occasionally brought her down south to stay for a break.
    Husband: a couple of years before he died, he became veryr badly depressed; then contracted cancer. Nursed him at home for eight months.
    Mum has mix of alz and vascular and moved in with me about 15 months ago. She's 88 and I'm 62. Sister will have her to stay occasionally (and looks after her lovingly and beautifully) to give me a break and once in an emergency, but I carry the whole load the rest of the time as visits are few and far between and practical help in other ways minimal. After three rounds of phone calls to care agencies over four months, I've finally found two decent ones who can now do a get up at a sensible hour in the morning (can't go out leaving mum in bed - recipe for disaster).
     
  17. Bigreader

    Bigreader Registered User

    Jan 22, 2016
    26
    After my father died in 2001 I discovered that Mum, then 76, had never written a cheque in her life, had no idea about finances at all or how to deal with anything that wasn't domestic related. So I tried to teach her how to balance her cheque book, but in hindsight the dementia was beginning then, so I was on a hiding to nothing. By the time we sold her house and moved her closer to us in warden controlled flat, I had to take her bank card as she was spending like it was going out of fashion, often making repeat buys as she'd forgotten she'd already bought it! I have cared for her ever since, albeit with carers coming in every day, till her death on New Years Day.
    As well as that I was looking after my two grandchildren 3 days a week and my husband who had severe heart/lung problems. Now I just have the grandchildren, so it's rather a strange time for me just now. Grieving is exceedingly tiring.

    Bigreader x
     
  18. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    1,127
    eastern USA
    I'm so sorry you've lost your mother. What a load you've carried, and oddly I imagine the feeling of release from care of your mother also comes with its own burdens.

    I hope you'll come back and let us know how you are doing.
     
  19. Beetroot

    Beetroot Registered User

    Aug 19, 2015
    363
    My mother in law had no idea about finances - it wasn't mental impairment, she just left it to her husband and then to me. She regarded dealing with finance as "men's work" until she met me.
    I'm sorry for your losses Bigreader. Yes, grieving is tiring, but you have had an awful lot on your plate. It may be, now the practical need to be on the go all the time and thinking for others has diminished, your body is telling you it's time you rested. We get so tied up in caring we forget there's nothing wrong with spending an afternoon curled up with a good book or good film. Best wishes to you.
     
  20. DMac

    DMac Registered User

    Jul 18, 2015
    537
    Female
    Surrey, UK
    I think I am a newbie to caring, compared to many of the other posters on this thread. I have it comparatively easy, as I share caring responsibilities with my OH and his siblings. It all started in earnest about 2 years ago, when my father-in-law (now 82) went into hospital for a bowel cancer operation. He was there for about 5 weeks, and was discharged with a reablement package. I stayed with him and MiL for about 2 weeks after he arrived home. Since that time, he has received a combination of daily agency carer visits, and regular visits from his adult children. Me and my OH visit together once a week, and I also go to over to them as and when needed for hospital appointments etc. His daughter sees them most of all, as she puts him to bed most nights.

    It became apparent at the time of his operation that mother-in-law (now 77) also needed a lot more support because of her advancing dementia. The biggest issue has been her resistance to receiving help, and her insistence that everything is OK and that she is fine, she can manage, thank you! Last summer she was disqualified from driving, and we sold her car. Unfortunately, even now she still believes that she's able to drive, and doesn't understand why her car was taken away. At least she now has a formal diagnosis of Alzheimer's, and is on the max dose of Donepezil, which seems to be helping her.

    The next biggest issue has been disagreements between myself, my OH and his siblings over the level of care they need now. A couple of my OH's siblings think I am over-caring. I think the current caring arrangements are inadequate for their needs. But I have resolved to step back, and let them work out for themselves what is needed. I provide support to my OH and to them whenever needed.

    Now, at 55, I am looking to return to work (my last job came to an end last May). I have a job interview this coming Friday, and I'm terrified I'll make a mess of it! On the one hand, I'll be disappointed if I don't get it, as I can't see many more chances of employment coming my way. On the other hand, I'll be relieved if I don't get it, because then, at least, I'll be on hand to attend those lastminute.com hospital appointments where they phone and give you less than 24 hours notice, I'll be on hand to drop everything and go round to their house to take delivery of some piece of equipment (last week it was a hospital bed), I'll be on hand to dash around to their house if he presses the emergency alarm button, etc. etc....

    Sorry, this has turned into an epistle! To answer the original question, I have been caring for about 2 years, with one period of high intensity, and latterly with just weekly visits. With the odd visit thrown in here and there. I feel worn down by the constant worry, and feel as if I'm in a constant state of vigilance, and their journey has barely started.... oh my.....:(:(:(
     

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