What to do............

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

  1. byrnedjp

    byrnedjp Registered User

    Mar 21, 2013
    I care for my Uncle

    4 years in ....and the strain is beginning to show
    My sister helps - she works all week and comes friday night so i can go home til sunday evening (i sleep mostly) - but its affecting us both and i cant "hide" it anymore - i have no life to speak of and my sister is almost done ( i can tell )
    My Uncle is mostly silent and "responds" rather than communicates - some days consist of 2 verbal exchanges - if im lucky.
    i do Everything on his behalf, Cook. Clean. Wash, Clothe, Medicate etc Everything - hes ok - safe and well cared for in his own home.
    I deal with the Daily Nurse the appointments the blood tests the chemist the shopping the cleaning the etc...

    I know if i stop he goes into a Nursing home - I know he wont be cared for

    What to do...............
  2. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    Hi byrnejp :)

    First of all, it sounds like you and your sister are doing an absolutely amazing job. No-one could do more. But.....I think you are saying that you are both now risking your own health and well-being in your uncle's interests. Your sacrifice is admirable, but is it sustainable, going forward?

    I think you know the answer to this. You cannot go on as you are, if you are not careful, there will be three 'patients', not one....So, what to do? Find a good care home (either residential or nursing, depending on his needs). This is the best thing you can do for your uncle now. Make sure it's a good place, then visit regularly.

    An alternative might be live-in care for your uncle in his home, but this is horrendously expensive, and not always easy to organise.

    Once you have a life of your own, you will have more to offer your uncle, and can concentrate on maximising the quality of both your lives. And you and your sister may have some time together, too :)

    Sending you (((hugs)))

    Lindy xx
  3. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    Hi byrnedjp,

    I totally agree with Lyndy. You have done more than enough and now it's time to think of your own health. Hand over your uncle's care to a good nursing home.

    All the best,

  4. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    Please don't think that your Uncle will not be cared for if he has to go into care.

    If you do your homework, choose carefully and make sure that they know everything about your Uncle so they too can make sure they can care as you would wish then your Uncle will get the care you want him to have.

    Next month my husband will have completed his third year in nursing care. He has had wonderful care. I have never stopped caring but I get to do the nice bits of caring whilst they do the rest. We have had more quality time together in those three years than we did in the previous 7 years I cared for him at home. He has gained so much and so have we his family. One of our grandchildren despite 3 years qualifying for a quite different career is now a carer in her granddad's nursing home, as she says, to repay the care and kindness shown to her granddad and his family.

    It does not have to be the end of the world if your Uncle goes into care but it may be a long way off if you get some help with caring.

    Take care and good luck
  5. joggyb

    joggyb Registered User

    Dec 1, 2014
    I'd just like to reiterate what jaymor has said. Not all care homes are bad. My own father went into a home last October, and he gets far better care all round than I could ever have hoped to give him. You just need to do your homework, go and look at a few homes, and choose carefully. As others on here will probably echo, don't go by the looks of the place - it's all about the staff and the care. Are there plenty of carers around? Are they attentive to the residents, and actively engaging with them? Are there plenty of activities laid on? Visiting therapists, etc?

    If you can satisfy yourself that there is a place suitable for your uncle, then you can relax a little, get your life back, and go and spend quality time with him when you visit.
  6. LYN T

    LYN T Registered User

    Aug 30, 2012
    Brixham Devon
    It's unfortunate that whenever there is a TV program about a bad CH/NH the balance is never redressed by showing a couple of good ones. I'm not denying that there are bad ones but I have to agree with Jaymoor and joggyb -good ones are more common then we think.

    The CH my late Husband was in was brilliant; homely, cosy and a bit tatty but filled with Carers who showed love and compassion to even the most difficult of residents. Do your research now; just turn up and go with your instincts. You will find somewhere.

    Good luck

    Lyn T XX
  7. byrnedjp

    byrnedjp Registered User

    Mar 21, 2013
    Thanks to all.

    Its just the realisation that somethings got to give -

    3 stays in respite of which the first 2 resulted in 2 official complaints - mental health team , council age protection unit and advocates all involved ......result? Nothng -

    3rd stay - 2 weeks - lost a stone in weight - Dentures were black - hadnt been cleaned at all - clothes were dirty - unshaven and in bed on the morning i arrived to take him home (11.00am) - oh and his blister pack had the following Sundays tablets missing - i picked him up on the Thursday prior.

    I spoke to all the agencies that had helped me the 1st 2 times and they said it was up to me to make a complaint. I didnt - i now consider it pointless.

    I am in North London - i hope its better elsewhere.

    What to do........

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