1. Jool

    Jool Registered User

    Apr 21, 2006
    Kendal, Cumbria
    My 82 year old mother is finding it increasingly difficult to cope with my 85 year old father who was diagnosed with AZ a couple of years ago. They have no family nearby and I live 90 miles away. Dad goes to a day centre under protest twice a week and occasionally has a week of respite care. They regularly come to stay with me and my family and I have just returned them home. It became rather stressful with Dad's continual repetition as to where his grandchildren were, where my husband was, where the cats were etc etc. When we take him out he has twice now shouted at small children and told them to behave (he's a former teacher) once was in a cafe and once in a shopping centre. Fortunately the parents were understanding. He cannot be left alone at home as he is very unsteady on his feet and regularly falls over.

    1. Is it best not to take him out for fear of him upsetting young children?
    2. At what stage do we consider putting him in a home?

    I know this 2nd question sounds harsh, but my mother spends a lot of her time in tears and I feel guilty because I'm such a distance away.

  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    To question 1) I would ask - were they actually misbehaving? :eek: Sometimes dementia sufferers say what the rest of us are too shy to mention. Seriously, I think it's important that children learn that there are a variety of people out there. Assuming he's not actively trying to attack them with a stick, or something, I would not restrict his outings - I'm sure he has little enough pleasures now anyway.
    2) when is residential care right? For me it's when the sufferer is either a danger to himself or to others. I include in that danger to the health or mental well being of the carer. I don't care how long you've been married (or in my case been a child) - there comes a point in time for most people (not all) where it's necessary to say enough is enough.

  3. Jool

    Jool Registered User

    Apr 21, 2006
    Kendal, Cumbria
    Thanks for that Jennifer
    My mothers health is definitely suffering. Eight years ago, she suffered badly from depression and was on medication for some time. It will not take much more of this "caring" to tip her over the edge.

  4. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    Hi Jool and welcome

    I think an important question here is whether your mum wants your dad to go into a home. Also, are they getting any help at home, does your dad go to a day centre etc etc. Has your dad ever been into respite care? This could give some idea of how well he would cope with going into residential care.

    Sorry to fire questions at you but if we have more info then we can offer more suggestions. You have come to the right place and you should ask as many questions as you feel necessary. Someone will have been there, done that, and got the t-shirt (probably many people in fact, good job they make those t-shirts in ginormous sizes!)

    Take care
  5. Nell

    Nell Registered User

    Aug 9, 2005
    Hi Jool,
    I agree wholeheartedly with Jennifer. It sounds as if day care, respite, etc. are no longer enough to give your Mum the break she needs. I know how exhausting it is to be with my Mum (who IS in a home) because of the constant repetition among everything else.

    I doubt your Mum will be able to say "I want him to go into a home" - after all these years of marriage and caring, she may feel it is her duty to keep him with her. You may have to be the strong one here. Your Mum will find it hard enough to deal with the separation, the guilt, etc. so maybe you can shoulder the burden of the decision making for her . . . ???

    I realise this is VERY hard on you (and you too will feel guilty) but now it is important to do what is right for both of your parents. I wish you the best in this awful situation. Nell
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hi Jool,

    The time to consider residential care is when the sufferer, and more importantly, the carer are at risk. Before your mother collapses under the strain, there needs to be a contingency plan.

    It would be advisable to explore the available homes, local to the area your parents live in, and even if your mother is not yet ready to do this, there`s nothing to stop you acting on her behalf.

    Your mother is 20 years older than I am, and I know the strain I`m under. I don`t know how she copes.

    Take care Sylvia
  7. Jool

    Jool Registered User

    Apr 21, 2006
    Kendal, Cumbria
    Thank you for your replies - they have been helpful. I have decided to contact my dad's social worker and ask for a care plan review as he hasn't had one for about 18months. I am also going to write and spell out the full picture as I know when the social worker visits my parents my mother doesn't reveal the full picture; if she did, my dad would just contradict her and say he is perfectly alright. In his world he is perfectly ok and everyone else has problems! He has a completely unrealistic view of his condition and health, however I suppose this is how he deals with it.
    I will also explore the availability of local homes as I am not sure how much longer my mother can cope

    thanks again

  8. Moose1

    Moose1 Registered User

    Nov 15, 2006
    Sharing thoughts

    :) Hi Jools - I don't have any advice for you but I just felt I had to write (1st time on Talking Point) to say that others are in a similar position as yourself and I can relate to everything you say, especially as you are wondering when is the right time to put one's loved one in a home. Oh the guilt! My Dad is the carer of my Mum, both in their 80's, and he will not give in. I don't nag him but just support him in any way I can, even though I live over 130 miles away. I'm visiting this w/e and will no doubt see a deterioration in Mum. Sometimes it is Dad I worry about the most. Talking Point is great for finding out what others think about AD and all the pain it causes. Having said that I have to smile at the jokes people write - it helps to chuckle now and then.
  9. Jool

    Jool Registered User

    Apr 21, 2006
    Kendal, Cumbria
    Hi Moose
    Welcome to talking point and thanks for your reply - I am sure you will find a lot of support in this forum. Guilt seems to be a problem for a lot of people and it seems to be made more difficult for those of us whose parents live some distance away. We can only do our best.



    PS: all the fact sheets on this website are really useful
  10. Sandy

    Sandy Registered User

    Mar 23, 2005
    Hi Jool,

    Your idea to contact your dad's social worker and ask for a care plan review sounds excellent. Sending them a letter outlining your concerns about the current situation, outlining specific issues, also sounds very good.

    I can see from your post that you live some distance away and have children, but is there any possibility that you could arrange to attend the meeting with your parents and the social worker?

    We are in a similar situation (living about 60 miles from my husband's parents) and I managed to get the day off work to attend the initial meeting between my in-laws (my FIL has AD/vascular dementia) and their social worker. I was able to help persuade my mother-in-law to accept, as a trial, the services of caregivers for two afternoons a week. I'm sure that my participation in the discussions helped to arrive at a workable compromise in a way that a letter alone would not have been able to achieve.

    Take care,


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