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. Dooners

    Dooners Registered User

    May 23, 2015
    6
    Hi all,

    I am new on here today, so just wanted to say hello and see what advice I can get on how to manage my own wellbeing!

    My mum (85) was diagnosed with Alzheimer's 4 years ago, was put on Aricept and has been pretty amazing ever since. Her decline seemed to stop and she was forgetful but manageable.

    Over the last year, my dad (88) has had a dreadful run of ill health (Gall bladder infection and subsequent removal, fall resulting in Subdural Haematoma needing to be drained, 6 UTI, 4 bouts of pneumonia, 9 hospital stays and a series of mini strokes), and is now in a nursing home. From a very fit man, still playing golf in Jan 2014, he now has pretty much lost control of bodily functions and has had several falls and yesterday was diagnosed with Alzheimer's.

    Since Dad became ill, the stress on my Mum has kick started her decline and, although still slow, I can see the little parts of her brain slowing falling out... We go to see dad and have the same conversation over and over and over. She still thinks he is coming home (and tells him that regularly, which makes him upset as he really misses her and usually after her doing this, he wanders the corridors at night looking for her - ending up in other people's rooms!).

    My sister and I have been trying to cope with all of this and are both struggling emotionally to cope.

    I am a single mum with 2 teenagers and a really busy job, and have no weekends because of the travelling to see Dad with Mum. University visits are also beckoning in the next few weeks.

    I am managing not to go down the anti-depressant route, but I am exhausted and not sure where to turn.

    People always say "you must look after yourself. Make time for you", but as I am sure you know, that is completely impossible. Every spare moment is spent driving (2000 miles in a month) and then not sleeping at night. I feel like I am heading for the edge of a long drop, but determined not to fall in.

    Sorry - this sounds really moany, but it feels better getting it all out to people who know where I am at.

    Any tips (apart from drugs and alcohol!!)
     
  2. marionq

    marionq Registered User

    Apr 24, 2013
    5,855
    Female
    Scotland
    I would start by cutting the weekend visits to two a month. Try to arrange a visitor to call in to see your Dad and phone you to give you a bulletin. When you are overwhelmed you have to look for strategies to cut your commitment and don't let others guilt trip you. They don't live in your shoes
     
  3. Dooners

    Dooners Registered User

    May 23, 2015
    6
    Thanks Marion,

    We have tried this. My sister and I share the visiting during the week, she goes twice and I go twice (both with Mum). On the other days, his friends go in, or Mum's carer takes her. It just seems that if I don't go at the weekend, I don't get to see him and feel really guilty. I think he has more visitors than anyone else in the home (possibly all of them put together)!

    The home is an hour away, so the visit takes 3-4 hours in total each time. My mum refuses to go into the home with him (which would make things easier), but we want to keep them both happy as long as possible.

    We are a very close family and I'm afraid suffer from the Catholic Guilt thing. I am trying really hard to pull away from it, but I worry that if I only see him twice a month, I will have to live with that once he is gone.

    Fi
     
  4. dede5177

    dede5177 Registered User

    Feb 5, 2015
    22
    Nuneaton
    : Need some me time

    Hi

    I moved back to be with my mom once she was diagnosed with dementia, some things you will have to cut out so take a long look at routines, my oldest in the summer before Uni was really helpfull would do shopping and look after pets so see if at least one child will step up to the plate. Also look at staying over at moms on the weekend take a sleeping bag if needs be and just get your head down for a few extra hours it helps.

    book in a few extra hours of sleep somewhere in the week and remember takeaways or double meals can you cook double and freeze half can you get a takeaway one extra night small changes can make a huge difference.
     
  5. marionq

    marionq Registered User

    Apr 24, 2013
    5,855
    Female
    Scotland
    It is interesting you mention the tortured conscience of the Catholic. I have been RC since marrying my husband 50 years ago and have been mostly exemplary. In the last couple of months it has all gone as I cannot cope with All the issues that dementia has brought and the examination of conscience too. His sister collects him on a Sunday and takes him and brings him back from Mass. I have two hours of peace and a completely clear conscience! Do what is necessary for your own well being and that if your family. If your father is getting plenty of visitors you are not letting him down.
     
  6. Dooners

    Dooners Registered User

    May 23, 2015
    6
    Thanks Marion,

    That really helps.

    I don't even really practice any sort of religion now, but having been brought up Irish Catholic and attended a Convent School, it sort of gets "beaten" into your subconscious!

    I think Dad would be ok with less visits, as long as someone goes in, but my Mum would make my life hell! Even though I phone her every night, she still says that I didn't bother to get in touch (I know, it's the Alzheimer's). Sometimes it is easier to just give in and do it - we may not have them much longer.

    However, that said, I didn't go (or phone) today - such a rebel - and instead had some time with very good friends. I don't feel guilty yet, so maybe this is the start of a new movement!

    Fi
     

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