What to tell my daughter

Discussion in 'ARCHIVE FORUM: Support discussions' started by Philippa, Mar 6, 2008.

  1. Philippa

    Philippa Registered User

    Feb 26, 2008
    Hi, I'm Philippa and am pretty new to TP. Dad is 87 and has vascular dementia. I live nearby so Mum and I look after him together. He has deteriorated very rapidly since the New Year. I don't really understand why, although he has had a chest infection. He now has great difficulty walking, cannot wash himself or use the toilet unaided, has trouble speaking, eating, is asleep most of the time, extremely confused, occasionally 'seeing' things, does not know what time of day or night it is, makes strange moaning noises, etc etc.

    As you can imagine, we are really worried about him. He has spoken about wanting to die.

    I have two questions that someone may be able to help me with. The first problem is that my daughter (15 yrs old and fantastic with her Grandad) is going on several trips in the near future, from a weekend away to a ten day trip, and I don't know what to do if something should happen to Dad when she's away. Should I tell her? Phone the school trip leader and tell him? I don't want to do the wrong thing. I don't really want her to go away at all but I can't make her put everything on hold in case Dad dies. He could conceivably last for years (although realistically I don't think so).

    The second question is, being new to all of this Mum and I have no idea how the system works. I think she needs some help, maybe just someone to pop in for an hour or so once a fortnight to keep an eye on Dad so Mum can go out. But how do we go about this? Is there an organisation that we could contact? So far, Dad has been to one memory clinic, had one visit from a mental health nurse, one from an occupational therapist and that's that. He's been waiting for another brain scan for over six months, still no appointment has been set and he's now far too frail to leave the house. Mum finds it difficult to ask for help but she is sorely in need of it at the moment.

    I hope someone has some bright ideas!

  2. helbo

    helbo Registered User

    Mar 1, 2008
    I'm new to this too, and I'm sure that someone will be along soon to give you expert advice, but speaking as a district nurse, I would say you need a lot more than someone popping in once a fortnight. I would say your GP needs to see this deterioration, and could involve social services / district nurses. as the mother of a 15 year old too, I would say speak to the school and ask their advice,they will have had experience in things happening whilst kids are on trips.
  3. germain

    germain Registered User

    Jul 7, 2007
    Hello Philippa,

    I think it depends if your daughter is 15 "going on 5" or 15 "going on 50"

    Why not talk to her and see what she wants ? She may want to be told and rush back, or told and rely on her close school friends for support, or she may want to be told calmly after the event !

    Only she can tell you.

  4. laura92

    laura92 Registered User

    Aug 28, 2007
    #4 laura92, Mar 6, 2008
    Last edited: Mar 6, 2008
    hi, i''m probably not alot of help, but i am 15.
    When my dad died i was at home, but it toke my sister who he lived near my dad 4 hours to contact me and tell me, then she wouldn't tell me directly, (i didnt really no her)
    i was upset about my dad, but more angry that it had taken so long to be informed.
    My advice would be for you to contact her, and tell her, if not you could find that she gets angry that she wasn't told straight away. if your daughter has been involved for a while, she's probably coming to terms with it, and has probably thought about the fact it may happen whilst she's away. we are quite good at keeping it from our parents, what we think.
    from a point i could see why talking to her before hand would be a good idea, but it could mean she may not want to go.
    if i was your daughter, i would want to be notified whilst i was away, but i do think if i was to be told before hand, i wouldn't want to go.
    Hope this is some help to you.
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    #5 Margarita, Mar 6, 2008
    Last edited: Mar 6, 2008
    Tell her to go and enjoy herself , sounds like your imagination is running away with yourself .
    why worry about what your going to do in telling her if its not even happen yet .

    I know their your feeling and am not being disrespectful to your feeling , so if you need advice, if it was my daughter I would tell her when she got back from the trip , rather then ruin her enjoyment while away . she going to have enough grief to deal with when she get back IF it did happen so the time away without worry will do her a world of good mentally .

    The mental heath nurse could of told your mother what support they is available for her , can you not get back to the mental heath nurse and ask her to do an assessment on your mother care needs , as in bring in carer to help your mother , to help your father do you not have a social worker?
  6. Philippa

    Philippa Registered User

    Feb 26, 2008
    Thank you all, and Laura especially. It is really useful to hear from someone the same age as my daughter. I am so sorry about your Dad, you're far too young to lose a parent. I really value all your replies and have a lot to think about now. Feel free to keep the advice coming, it is such a help to hear from people who have experience of this disease.

  7. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    While I do think you may be crossing your bridges before you come to them, I also agree very strongly with Germain: ask her before hand how she wants you to handle it. At 15 she's definitely capable of making the decision, and it's better that it's made in advance without the guilt and grief intruding. I'm not saying that if something happens and you act in accordance with her wishes that there won't be the possibility of regrets, but I think it's almost certain that if you don't discuss it in advance and then make the decision at the time what you do will be wrong: when grief is involved people can spread the blame around without really thinking it through.
  8. hendy

    hendy Registered User

    Feb 20, 2008
    West Yorkshire
    Dear Phillipa

    I agree totally with everything Margarita has said. Speaking as a teacher who takes children away on residential trips, think about the practicalities. If your daughter received bad news she probably would not want to take part in the trip and who would have to pick her up? It would be very difficult for staff to leave colleagues and children with less supervision and this would cause a dilemmas and significant problems for staff. Although I'm sure they would do their best to help out.
  9. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Can I just add to my post above? I would bear in mind the logistical issues that have been raised (I think if she wants to be told you have to take the responsibility to pick her up if necessary) but I feel quite strongly that to avoid telling her only for fear of the logistical problems may seriously impact your relationship in the future. I suppose what I'm saying is: don't make the decision on the basis of whether it will make waves, make it on what's best for YOUR family.
  10. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs
    I agree with the others that you should talk to your daughter to get her point of view, if she is anything like my 15 year old niece, who would be mad if she felt we were keeping things from her about her grandpa.

    My Dad was diagnosed 15 months ago and shortly afterwards she looked over my shoulder whilst I was on TP. "Why are you looking at an AD site?" Without thinking I replied "Because of Grandpa". "Why? Has he got AD??? :eek::eek::eek:" I had just assumed that my sister had told her. She was fine with the diagnosis and is great with my Dad, but boy, she gave my sister hell for not telling her the truth.

    Could you talk to your daughter in an abstract way? Instead of saying 'I think Grandad might die whilst you're away, what do you want me to do?' (I'm not suggesting you would be quite as blunt :eek:), but more along the lines of 'Should we have a family policy that if we are away and something terrible happens we should we be told even if there's nothing we can do about it?' This is the policy we have in our family, which we don't always stick to.:(

    If you feel that there is a very real possibility that something might happen to her Grandad whist she is away, perhaps you should tell her this too.

    I am doing a Sahara trek (in aid of AS) in October and am dreading something happening to my Dad whilst I am half a mile up a sand dune in the middle of the desert. I am pretty certain we will have a satellite phone, but I will have to have a talk with my family nearer the time as to what they do if something does happen.

    I blame mobile phones. Years ago we went away for 2 weeks and we had no idea what had happened at home and those at home knew nothing of what had happened to us. My Dad used to say to his mum who was a terrible worrier: 'Mother, watch the news. If we're not on, we're OK!'
  11. Philippa

    Philippa Registered User

    Feb 26, 2008
    Thanks again. Have to be quick as I have to go out for a while. Mobile phones are dreadful, aren't they! You can't get away from anyone for a minute.

    My daughter is a very mature 15 and knows exactly what is happening to Grandad, telling her friends in a matter of fact way that he has dementia. We laugh at the strange things he says. Better than crying.

    I'm still mulling this all over. Will check in later and re-read all your posts. Thanks so much for taking the time to reply. I so appreciate it.

  12. laura92

    laura92 Registered User

    Aug 28, 2007
    as much as mobile phones are terrible, they are also like a security blanket. could you possibly ask her teachers if she could take a phone with her, if she has one. i guess the teachers wouldnt let her keep it on her all the time but they could keep it and let her check it once a day, just so she could stay upgraded on her granddad? it may then give her the security, to know you can contact her, and she will then be able to have fun, knowing you have a way to get hold of her.
    if i can help you with anything just ask, you can always private message me. anything i can do.
    i hope you manage to work out what to do.
    love laura
  13. BeverleyY

    BeverleyY Registered User

    Jan 29, 2008
    Ashford, Kent
    Hi Philippa

    I agree that you should sit down with your daughter, and go through the scenarios, then let her choose. I personally just don't agree with the let her go and say nothing approach. We are talking about the possible end of a life, there is no second chance to say goodbye.

    I lost my Mum 7 weeks ago. We were told that day that my Mum would die in ITU. I had to think on the spot, what do I do with my 13 year old. She is very mature for her age. Do I leave her at school, or do I go get her. My husband went and got her, and when she got to the hospital, I asked her what she wanted to do. Did she want to go and see Nana, and then go home, or stay. Now, I knew this was potentially daunting for a 13 year old. She chose to stay, and I am proud of her bravery. My Mum died with her husband, 2 daughters and 3 grandchildren all holding her hands/arms. The only grandchild missing was my 7 year old who understandably is just too young.

    My daughter told me that she would have been very very angry if I had denied her the choice to be with her Nana as she left this world.

    Speak to your daughter - she is the ONLY one that can give you the answer you need.

    Beverley x
  14. Margarita

    Margarita Registered User

    Feb 17, 2006
    #14 Margarita, Mar 6, 2008
    Last edited: Mar 6, 2008

    what I can not understand is that have you been told by a doctor or consultant that your father is now at the stage of end of life not long to live ?

    as you say you can't understand why his deteriorated very rapidly since the New Year, as I am no doctor , but chest infection can course what look like dip into progression of the disease , but antibiotic can clear it up, pick them up .

    I am all for talking it over with your daughter asking that if she wanted to know or not if her grandfather passer away while she on holiday . would she want to know ? but your have to make it clear to her that if may NOT happen .

    because like laura92 says

    So how are you going to get around that one as it seem every one saying tell her before hand .

    So I would make it very clear to my daughter reassuring her that it May Not happen , not to worry , have a good time away but you was just wondering If it did what are her wishes to be told or not while on holiday .
  15. 117katie

    117katie Guest

    #15 117katie, Mar 6, 2008
    Last edited by a moderator: Mar 6, 2008
    I can only agree with Germain and Beverley, if your daughter is 15 going on 15+ a few years, and as you say is aware of the current situ, then TALK TO HER, and just explain that she will be able to cope comfortably WITH YOUR SUPPORT with whatever happens in the next week/s ... you don't know, nor does she.

    She sounds like a great gal, so with your help, she will cope, and she will thank you for having talked to her in advance of whatever may or WHATEVER MAY NOT occur in the near future.

    And I would also talk to the "trip leaders/organisers" and just explain the situation.

    Your daughter's life perhaps will not need to put on hold ... nor should it be. She's a youngster, who understands. So talk to her, and ask her to listen, hear and understand what you are talking about. Important bit for me at the moment (for which I apologise, but it is very important for me) LISTEN, HEAR, AND UNDERSTAND.

    Your daughter will have many more trips in the future, so if she decides that she wishes to be "recalled from one trip" because of a situation that may happen, then that is her decision. As long as she is allowed to understand that it is her decision.

    Lots of hoping that your daughter has a good few adventure-trips ahead of her. With your support, of course.

    Almost forgot to mention ... as is my habit ... that you could talk to your Dad's/Mum's GP and ask for HELP! If only WHAT THE HECK DO I DO NOW?

  16. Philippa

    Philippa Registered User

    Feb 26, 2008
    Haven't had a chance to get on the computer since earlier. Thanks again for the replies. You have all given me a lot to think about. I will find some time tomorrow to try to come to a decision. Hope you all have a good night.

    Philippa x
  17. Philippa

    Philippa Registered User

    Feb 26, 2008
    I've been reading through all your posts again. I wish you'd all be in absolute agreement!! You all make such valid points. It was great to hear from Laura, as a 15 yr old herself, and also from other mothers/aunts of teenagers and school trip organisers. My final decision will be put off for a couple of weeks as my daughter is away this weekend but it's strictly a no mobile phone trip so it will be absolutely impossible to contact her. The next time she's away she will be on holiday with her best friend and her family so I will talk to the mother before they go.

    As for Dad, his chest infection was treated with antibiotics. A chest x-ray revealed fluid on his lungs which he's taking tablets for. I think it may well be that this has caused such a deterioration in his condition. I just hope things do improve as his quality of life is very poor at the moment. I agree that I am probably worrying about things before they happen but if you could see him you would probably know why.

    I have had a chat with Mum today about trying to get some help. I've told her it's no good to put on a stiff upper lip in front of the doctor and that she should tell the truth. She agreed and then said she didn't want strangers in the house. I give up! However, a very sweet man she knows (an ex-carer himself)has offered to sit with Dad if Mum wants the odd morning out and she is thinking seriously about accepting this offer. At least it's a start. The occupational therapist is calling in on Monday and I intend to be there to have a word with her. Maybe she can help.

    Just a final message to Laura, thanks for your kind offer. I probably would have private messaged you if I wasn't so totally computer illiterate. It took me days to work out how to post a new thread!

    Best wishes to you all

  18. Nell

    Nell Registered User

    Aug 9, 2005
    Sorry if I'm adding to your confusion . . . !! The school WILL have a way to contact the excursion group while they are away. Even if there is a strict "no mobile" rule for the students, the staff will have one OR be able to be contacted at the location . If your daughter goes, it might be wise to tell the school in advance that this situation could arise and you will need to contact your daughter ASAP. Also, I would be very surprised if they did not allow you to talk directly to your daughter under the circumstances. The "no mobie" rule is a valid one as teenagers can think up wildly original ways to commit mischief with them! :) Phoning for pizza deliveries, arrangng midnight get togethers with boy friends, you name it. . . . !!!

    But any reasonable school will not forbid a mother and daughter talking in the case of an emergency. You might also find they are helful in arranging to get your daughter home if it becomes necessary. As a teacher, I agree that it is not reasonable to expect a staff member to bring her home, but they might be happy to meet you somewhere, or take her to a certain point for someone to colect.

    Sorry if this only makes the decision harder. Every best wish with whatever you decide.
  19. Philippa

    Philippa Registered User

    Feb 26, 2008
    Thanks Nell. The school is very good and I have an emergency number for the group leader. I'm just taking it one day at a time.

  20. rhallacroz

    rhallacroz Registered User

    Sep 24, 2007
    Carers Assesment

    Dear Philipa
    This post is about help for your mum which by all accounts she needs. She is entitled to a carers assesment from social services. My mum was just like yours a year ago when my dad started to decline However then he could walk and go upstairs to bed. At the time I felt that mum was coping but hadn;t realized that she was only coping because of the amount of time i was spending with her and dad. Not that I minded but i am a midwife and work partime have 2 jobs and and a busy husband who is always away. I decided that in the long term dad would need more care to avoid the inevitable which is 24hr care. We all try to do the best for as long as we can.
    I contacted social services and my local AZ organisation who put us in touch with a local care company who provided mum with 3 hours respite a week. It was the same lady that came and she took dad out. It did 2 things allowed mum some space and got dad used to seeing someone else. We continued on this path and then realized this wasn;t sufficient. It was then that dad took a place at an ordinary day centre he started to go one day a week. Us all feeling guilty that his life had ended up like this. But how wrong we were. Because without this support we all wouldn;t have coped.
    Now dad has deteriorated since Last february and is now been transferred to and EMI day centre that meets all his needs he goes 4 days a week. Is now unable to walk is doubly incontinent often needs hoisting as he wont weight bear has carers 4 times a day . He is still at home in his own surroundings having excellent care .I have a joint package with social services and the nhs which is unusual. However all this would not have been possible because if I had listened to mum and her cry I do not want strangers in the house dad would definetly be in care. So please get that assesment and all the help you can because without sounding pessimistic this is a very very hard journey, and you need all the help you can get believe me.
    As for your daughter Philipa be honest with her . My girls would be furious if they were not informed but they would not like their school trip interrupted. I am sure your daughter is old enough to understand the possibility. Obviously you must make your own choices and am sure you will make the right one.

    I hope you get support from TP I now you will we are all on this road together and do the best we can. HOpe this helps. Love and support to you and your family.

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