planning alternative care for mum.

Discussion in 'ARCHIVE FORUM: Support discussions' started by sonnyboy, Aug 16, 2007.

  1. sonnyboy

    sonnyboy Registered User

    Aug 16, 2007
    2
    high wycombe
    my mum 80 yrs old has been taken into residential home care for five years. All decisions in her care being taken by my father and sisters. My father recently passed away and one sister moved abroad. My other sister finds my mums illness too distressing to cope with. I now feel I have the opportunity to make alernative home care arrangements. I am married with three children 11,13&16. I am 46 and always been very close to my mum and wish that her final years could be with the family. She has never shown the violent symtoms that my sisters warned me would occur with the disease. If anyone can give advice on empowerment to change or on returning their parent back home after residential care please postit.
     
  2. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #2 Margarita, Aug 16, 2007
    Last edited: Aug 16, 2007
    Hi welcome to TP

    Just wondering why you want want to move your mother to an alernative home, a move can make them worse, as in more confused depending what stage your mother is in .

    have you spoken to social services to set up high level of care plan , if you take her home to live with you
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,537
    Kent
    Dear sonnyboy.

    I would think very carefully before moving your mother into your home, after 5 years in residential care.

    Are you unhappy with the care she gets now, or do you feel she would be happier in a family home?

    Moving home could unsettle her and she could become very distressed and disorientated. On the other hand, she could love living with you.

    I would discuss it with the manager of her care home, and if possible, have her to stay with you for a weekend.

    Then you might get a better idea of the demands of 24/7 care.
     
  4. carolr

    carolr Registered User

    Jul 12, 2007
    33
    bradford
    Dear Sonnyboy

    I like you desparately wanted my Dad living with me when he became too much for my Mum to deal with however my Mum would not give her permission for this and I was very angry about it at the time. Now however I accept that I just could not cope with his needs on top of the needs of my family.

    This horrible illness is very distressing at times and you have three quite young children in your home, please think very carefully about the effects that caring for your parent may have on them and on your partner.

    24/7 care is simple mind blowing add this to what must already be a busy household with three little ones and it would seem to me to be just too much for anyone to deal with.

    I found that it helped me to think of what I would want in my Dad's situation I would not want to live with my sons I would not want to put them through it and I would not want to cause them any more pain by living 24/7 with me I would want them to look after their own family and visit me when they could. My Dad cannot tell me those things but knowing his nature before AZ that is what he would want. Ask yourself the same questions and see what answers you come up with then shake off the guilt monster that we all carry around.
     
  5. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Think long & hard ...

    And as such, your decision :)confused: does no one else have any say in this?) will affect FOUR other lives, apart from your own. Perhaps you need to consider who will be actually providing the hands-on care during the day.

    Will it be you? Do you have any experience of such a draining activity, or nursing?

    If it's not to be you - you & your wife already have 3 children, at or coming up to "the difficult years".
    Even if they are all angels, puberty & the turmoil of emotions that go with it are difficult for all, and the demands of providing care for an ailing mother with whom normal communication could be problematical, to say the least.

    Could I ask, how long is it since you spend a whole day with your Mother? If it is longer ago than a year, perhaps you should make arrangements to do that BEFORE this decision is taken. That would also give you an opportunity to see how well settled (or otherwise) she is, and what relationships she may have built up.

    I'm sorry if this post sounds harsh, but I think you are reacting with your emotions and under the influence of the Guilt monster (we all know him very well here!) not from a position of knowledge about your Mother's present state of mind and what caring for her at home will involve. If I am wrong, I hope you achieve a solution which is happy for all concerned
     
  6. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,103
    Toronto, Canada
    Try a few days

    Hello Sonnyboy,
    I think Sylvia's suggestion of taking your mother home for a weekend or a few days is a good idea. You might even want to do a week, so that you would have a clearer idea about what would be involved in having your mother home 24/7.

    One thing I would like to point out about Alzheimer's patients, they cannot cope with change very well at all, if ever. If your mother is nicely settled in and she has been receiving good care for 5 years, you will most likely find she has a dramatic decline once she is moved to your home. This could include her developing new behaviours that are distressing to everyone around. The fact that it is your home unfortunately will probably not register with your mother.

    Do have a good long think about this and also have a consultation with the home and medical staff.
     
  7. sonnyboy

    sonnyboy Registered User

    Aug 16, 2007
    2
    high wycombe
    thanks all for the advice, I intend to have my mum stay first during the day and see how we all get on. I guess my "guilt monster" has reared its ugly head. I'm not trying to fly her out of the cookoo's nest after all. Possibly reacting to the reasons why she first had to be moved into the care home, decisions being made without any real debate and the death of my late father.
     
  8. carolr

    carolr Registered User

    Jul 12, 2007
    33
    bradford
    Hi again Sonnyboy

    I feel that guilt drives us all and we must accept once and for all that it is not our fault that our loved ones are in this situation it is the horrible illness that is to blame. We do not blame our relations for the things they do the violence and the rest why dont we give ourselves the same consideration. You feel this because you love them and want to make things better for them I want to take my Dad home and surround him with the love that we all have for him but its the wrong move I cant give him the medical suppport that he needs and he would hate the idea of me washing and dressing him so I visit take treats, take him out and keep him in my head constantly I also make sure that I keep a close watch on the staff looking after him and have an imput in his ongoing care.

    Give yourself a break Sonnyboy and your family too and try to enjoy any time that you can spend with your mum.

    xx
     
  9. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Dear Sonnyboy,

    At the risk of offending you, I feel I must agree with other posters and also point out that your obviously well intentioned plan is really a "recipe for disaster".

    Please be VERY honest with yourself about your motives. Are you just doing this because you did not have any real input into the original decision to move your Mum into a home? Perhaps at the time you felt it was the wrong thing to do and wish it didn't happen. . . . . ??

    Do you now feel you can prove the original decision "wrong" by having your Mum live with you? Because, if this is behind your plan, I suspect heartbreak is close on your heels.

    No doubt you love your Mum dearly and want what is best for her, so please don't think I'm criticising your motives. I'm being "Jack Blunt" because I HONESTLY think you have NO idea what the true reality will be.

    Some questions to ponder:

    If your Mum has been in care for 5 years she will need full time care (24/7/365). Are you in a position to give up work and manage financially for however many years she has left without returning to work? Because that is what it is going to take.

    Do you expect your partner / wife to share the care? Has she expressed willingness to do this? Or do you expect her to earn a living for the whole family so you can care for your Mum?? Is that fair?

    Your children are, as Lynne said, at or coming up to "the difficult years" - they need their parents more than ever now. Is it fair and reasonable to expect them to share their parents and their home with someone who undoubtedly has very high support needs? How will they feel in years to come if they can never have friends over because of Gran? never go on a family holiday because of Gran? Never have a family outing EVER AGAIN without taking Gran too?

    No matter how delightful your children are or how much they love their Grandmother, I believe this is asking too much of them.

    Perhaps if this had all happened BEFORE your Mum went into care, it would be a different story for all concerned. There are wonderful families (some on TP) who manage to do this, but the difference is, their parent / grandparent did not spend 5 years in a home first.

    And most important of all, your dear mother. . . .
    As others have said, moving someone with dementia is fraught with problems for the sufferer and only to be done in cases of dire emergency. Is this a dire emergency? Are you very unhappy with her care? Do you truly feel the ONLY answer is to have her live with you?

    My suggestion is:
    Arrange a month's holiday. Book a holiday cottage or something similar. You take your Mum on holidays for the month. Leave the rest of the family at home for the first fortnight - have the first 2 weeks as"mother and son" time. You take full responsibility for every aspect of her care for the two weeks.

    Monitor how she is coping. Is she happy? confused? - does she enjoy being away on holidays with you or is she wondering what is going on??

    If all goes well, invite the rest of the family to join you for the remaining fortnight. Continue to do ALL the care for your Mum yourself. Monitor how your partner and children cope with being with her full time.

    If at the end of the month you can truly say this is a GOOD choice for your Mum, your partner, your children and (very importantly) yourself - then go ahead with your plans, by all means.

    I probably sound very harsh and uncaring, but I am truly thinking of EVERYONE's welfare. Hasty decisions (especially those made because of guilt feelings) have a horrible way of rebounding on the very best of intentions.

    Despite the fact I have "lectured" you, I really do want you and your family AND your Mum to have what is best for everyone. I hope you can achieve this to your satisfaction, and to that of everyone else involved. Best wishes.
     
  10. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Hi Sonnyboy,
    Welcome to TP sorry to hear about your dad passing away. I feel everyone else has given you very sound advise. I hope that whatever you decide it works out well for you. My Gran had alzheimer's and she never became aggressive, but, she was a full time job. I couldn't image caring for someone with dementia full time and also caring for a young family. Let us know what you decide. Best Wishes. Taffy.
     
  11. germain

    germain Registered User

    Jul 7, 2007
    342
    Hello Sonnyboy

    I had my Mum to live with me for about ten days between her leaving hospital and moving into an assisted living place - I was on my knees at the end of it !
    I'm fairly youngish and fit - how others do it full time I just don't know.

    Some other things to think about :

    Some older people are very traditional about what they will eat - if you are a fairly modern family (all on the go all the time) you may find you either have to change your whole way of eating or cook twice for each meal. My Mum wanted three sit down meals a day - none of this grazing on bits and sandwiches for her. Otherwise she wouldn't eat at all - which caused problems with malnutrition etc

    My current obsesssion is dealing with the enormous amount of washing caused by incontinence and the SMELL around the whole house. No amount of pads can stop accidents happening and it gets into every chair, bed and all the bedding.
    Will you be prepared to change your mothers underwear when required (and would she be happy with you doing this ?) And if your kids are anything like mine was - they will be mortified !

    Can you go without sleep for days on end ? My Mum mixed up day and night and was forever rattling the stairgate (yes you may need one of these) to go out for a walk at 4.30 a.m. complete with handbag, shoes and dressing gown.

    And on a lighter note - are you prepared to search the whole house endlessly for things she thinks she's lost - and then you realise that the thing was last seen about 20 years ago !! (including two dogs and a parrot and the bear who seemed to live in our Yorkshire garden)

    We thought we were doing our very best for Mum but it just wasn't good enough. Really good professional care is a lifesaver for all. If your Mum is happy - why move her from her familiar surroundings which will be "home" to her. I know a few places are crying out for amateur volunteers to run bingo sessions etc (I know its not the same but there will be something, however small, that you could do to help her and any friends that she may have in the NH pass their days with a little more activity)

    Lots of people have mentioned the guilt monster - imagine how you'd feel if you gave it a go and then failed and had to move her again ! I couldn't cope for just ten days and I've never felt so selfish and bad in all my life. My Mum is now settled and happy and even starting to make a couple of sort of friends (these are non AD ladies who like to "look out" for her)

    All the best with your dilemma - its a heads you lose and tails you lose situation BUT if you or your family suffer - who will look after your Mum then- she could have many years left still.

    Thinking of you

    Germain
     
  12. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    945
    leigh lancashire
    Hi Sonnyboy
    You have been given some good advice on the demands having your parent at home can bring.I have worked in a home for many years and have seen this happen many times.Taking someone home for the weekend has proven too much for some families.I am not saying this will be the case in your home,giving it a try will give you the insight of what needs they have.The kids are a consideration though.I get stressed at work from time to time,when i come home the kids know straight away what kind of day i have had.Living with the stress and working with stress?I would sooner work with it but will live with it if the time comes with my dad.Such a difficult time for you all I am sure.Take care and do what you feel is right.If it turns out to be wrong then hey ho lesson learned.good luck and best wishes to you all.elainex
     
  13. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Hi Sonnyboy,

    I see everyone else has given you great advice - especially Nell who always thinks she's being to blunt!!;)

    I would only add that you do need to consider the impact of this on your children for the sake of them and your mum.

    I look after my mum in the morning when I have my daughter and my niece with me and as time goes on (mum is still in relatively early stages) she is becoming less and less tolerant of the noise that they make and, what to my mum, is the confusion of them running around the house and just being kids.

    I hope everything goes well for you whatever you decide but don't let guilt drive your decision as it's the worst emotion you can react to.

    Kate P
    XXX
     

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