Care at home until the very end?

Discussion in 'I care for a person with dementia' started by Johnny5, May 15, 2015.

  1. Johnny5

    Johnny5 Registered User

    May 3, 2015
    #1 Johnny5, May 15, 2015
    Last edited: May 15, 2015
    Hello, hope everyone is well.

    I am curious to know if anyone managed to avoid putting their loved one in a care home and were able to care for them at home until the very end i.e. until they passed away? If so, how was home care made possible?

    I look forward to your responses,
  2. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    I keep my mother at home with my wife and I until her last few days, my wife stopped work, the community nurse came 3 or 4 times a week, NHS supplied a special mattress and we just got on with it. I think it was made easier as without any special medication she was very docile and cooperative not idea what was going on but always happy to do anything you asked, eat what you gave her take her meds and never complained.
    In the end she died quite suddenly from a pre-existing heart condition.
    Now my wife has AZ I've had to start working from home and I have no intention of putting her in a home, however, you can never say never so unless it became completely unmanageable for some reason that's the plan.
    My neighbour over the road is well into her 90's and is looked after by her son and his wife with care visits 3 or 4 times a day and my next door neighbour until he died recently was cared for at home by the NHS, he thought I was his son and that several women were living upstairs in his house, but he stayed at home until he really did become a danger to himself.
    I know from what they say that very many if not most on here are caring for someone at home or did until it becomes too much to manage.
  3. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Some people do indeed look after someone with dementia at home till the end, but many people find it too hard to cope with once the dementia becomes advanced.
    My MIL looked after her husband at home right until the end with carers coming in 4 times a day. She never talked about it and I was too naive to ask (didnt know much about dementia then), so I dont know what it was like, but it certainly took a toll on her health. She once said that she was worried that she would die first and after my FILs death she only survived another couple of years herself.
    Every person with dementia is different though.
  4. garnuft

    garnuft Registered User

    Sep 7, 2012
    My sister and I looked after my at home until she died.
    She was blessed by having other health issues in her old age after 80 years of ruddy good health.

    She struggled with dementia for the last three years
    (she had it for longer but the last three years were when it manifested itself most fiercely, she was 86 when she died)
    but would never accept any input from carers, indeed in the latter months she wouldn't have any truck with Drs and nurses either.

    I (54) am already a carer for my adult son and my sister is retired (63) so we were able to spend all day and most evenings with her.
    We managed with this, even though inevitably it took it's toll on every aspect of our life.
    Whenever she was ill we slept overnight with her and the other would take over day duty.
    It was very hard.

    Xmas 2013 my sister and I discussed how it couldn't go on anymore and Mam was going to have to accept input from carers.
    We tried, they came...mostly they were given their marching orders.
    She had a crisis, wandered outside on January 2nd 2014 at 3.30am.
    This was always my deal breaker.

    We arranged 1 weeks respite, she hated every second, after 1 weeks agony she came home distressed and angry.
    She became ill from the heart failure she had managed for 15 years and after a stint in hospital where it was decided she couldn't endure the surgery required, we brought her home.

    She was still loving.

    There was no care we could access for overnight support, she would not allow daytime carers, my sister fell away from the stress of it and luckily, Mam's Prodigal son returned in time to do some overnight sleeps.

    I had to sort Mam's personal hygiene, try to coax her to drink, clean catheter, reminisce, sing, cuddle, watch and worry.
    The district nurse(palliative care) visited once a day. The carers would have been 4 times but were rejected.

    It was very hard.

    Mam died on 26th February 2014, in her own little cottage.

    It was very hard but I have no regrets.
  5. Johnny5

    Johnny5 Registered User

    May 3, 2015
    Thank you for your responses. It reassures me to hear that some people manage to avoid the need of care home. I am very hopeful that if myself and family organise ourselves well, support each other plus gain the support of external services if necessary, then we can care for dad at home. I recognise it will be tough, but I won't be doing it alone. I am of the opinion that one person cannot and should not be a sole carer for a person with dementia in the long term.

    Garnuft thank you for sharing your story, I am glad to hear you do not regret your choices. I think avoiding regret is a big part of my motivation to keep dad at home. But at the same time, I have no idea how his condition will pan out and it's probably best to never say never as I do have my red lines as to what I think we should not tolerate as a family. I just pray he stays calm and placid as he is now...

    Does anyone feel like it was a bad idea caring for their loved one at home? If you had to do it again would you make the same choices?
  6. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Having told you about my in-laws, may I now tell you about my mum?

    Mum was desperate to not go into a care home. She lived on her own at home and was becoming more confused and angry. She was no longer able to cook for herself and started getting into arguments with her neighbours, although a friend continued shopping for her. She stopped washing and changing her clothes and then started accusing her friend of stealing from her. She then stopped eating and drinking properly as she could no longer even make herself a cup of tea and forgot that she had not eaten or drunk anything. She refused any extra help as she was convinced that she could do everything herself - that she cooked, cleaned, did her own washing and shopping. She became suspicious of us all and would not allow anyone into her house (not even friends and family). She spoke to SS over the phone and convinced them that she could cope by herself and they crossed her off their books. Then she started wandering the streets at night in her nightclothes and getting lost, but she still refused any help.

    By this time I was pulling my hair out with worry, but SS said that if she chose not to have help then they could not force her. Eventually she reached a crisis - she had a TIA and ended up in hospital where her dementia symptoms became painfully obvious. She was also very underweight and severely dehydrated. She was not able to come and live with me as I already care for a disabled husband, so she went straight to a care home.

    Going into a care home has been the best thing for her. She has settled there and is much less anxious. She still says at times that she hates it there, but mostly she is content and has made friends. The carers are truly wonderful to her. She once hit one of them when she got frustrated and I was horrified, but they were completely unfazed and said there was no damage, so I mustnt worry. It is so nice to see her clean and well fed (she has put some weight on again), smiling and - above all - safe. I have no regrets.
  7. barny

    barny Registered User

    Jan 20, 2006
    I looked after my mum for 15 years with her dementia. She lived with us in a granny annex. Fortunately she was never aggressive or violent. She had 2 days per week in daycare and the occasional week in respite so we could have a break. I worked and also had children at home. I did all her care, I am a nurse so perhaps that helped. My husband worked from home so was around when I was at work. My nurse friends would help out if I wanted a break. I was very strict in maintaining routines as mum coped better with a structured day. She died in the night last August. I could not have managed without the support of my family and fantastic friends. Like everyone else we had difficult times but I am so glad we managed to keep her with us.
  8. Leswi

    Leswi Registered User

    Jul 13, 2014
    We came close to putting mum into a care home but the respite was a disaster for all involved so she came home. the home that did respite suggested a medication review which has proved to be helpful in being able to keep mum manageable. ZopiClone at night has proved to be a big help. We struggle but are keeping our heads above water dealing with mixed vascular/alz in advanced stages. People around who can help makes all the difference too.
  9. Spiro

    Spiro Registered User

    Mar 11, 2012
    #9 Spiro, May 18, 2015
    Last edited: May 18, 2015
    End of life care

    I always hoped to care for Mum at home until the end of her life. When she was first diagnosed I attended an "end of life care" workshop. It was a very detailed and informative session, and the trainer made a point of saying that it was never too early to start planning for the future.

    However, when caring for a terminally ill loved one at home, it's necessary to have the support of palliative care professionals. Either from charities who specialise in this type of work, or district nurses, community matrons and GPs.

    If David Cameron's plan to boost NHS funding to create a seven day service includes sufficient funds to enable people with dementia to die at home (if they so wish), then that would be an achievement.

    As always, the devil is in the detail.:D

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