Family fallout, advice please....

Discussion in 'ARCHIVE FORUM: Support discussions' started by blooddiamond, Sep 5, 2007.

  1. Amy

    Amy Registered User

    Jan 4, 2006

    My mother died 5 weeks ago - the dementia was very advanced - hadnt known me for years - I have still not said goodbye. I used to envy my father at times, being able to care for her 24/7 - I just felt that I was letting her down - maybe that is where you are too. Wanting to be able to do more, but powerless because of circumstances.

    Alex - if your in line for the firing squad - I'll join you.

    Love Helen
  2. germain

    germain Registered User

    Jul 7, 2007
    Hello Blood Diamond

    I may be completely off the wall here - but is there any way you could find them somewhere together ? If your Dad is quite frail he could be helped too.

    Not sure about London but my Mum is in a place where there are quite a few couples. (run by a trust whose name is the thing that keeps ships in place - musn't advertise I know !)

    Thinking of you
  3. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland

    Blooddiamond, you're not a drama queen. I understand the pain you are feeling, my feelings about the possible loss of my husband to full-time care are the same. I'm not ready to say goodbye.

    Germain's suggestion is a good one, if it could be managed. I'm not sure what the financial implications would be though.

    You've had lots of opinions and suggestions, and that's what TP is about. Read them carefully, try not to be upset, and then decide for yourself what is right for you.

    And please come back and tell us, we do care, you know.

  4. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Dear blooddiamond

    Well, I've given a lot of thought to this thread. I, too, have been quite disturbed by some of the responses. Lots I could say, but won't.

    That's a brilliant analogy, blooddiamond. Sorry to be so selfish, but would love to read your poem if you wished to share it.

    Have sent you a PM.

    With love, Karen, (Tender Face), x
  5. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    leigh lancashire
    Blooddiamond,all the advice given can be taken any way you like.all i want to say is that if follow it....then good.If you don't....thats still shows you have the will and the way to do whatever you feel right.I do speak for myself on this site ,but i hope i am joined by the other members in saying good luck in whatever you choose to elainex
  6. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    I am glad you got one prob solved ,the POA.? Think you should have made that EPOA. I am sure you did not come here for an ear bashing but for some constructive advise, and i hope that is filtering through now.It is obvious you care deeply for both your parents and do all you possibly can for them whilst living afar . However i do go along with most replies in saying, perhaps Dad need most consideration now . it seems you accept this will be the outcome and you will channel all your energy into finding the best home possible for mum, hopefully it will be in reaching distance for dad . it would be nice to see your poem posted in the poem section, if you would like to share it with us .
    Good luck .
  7. maria29al

    maria29al Registered User

    Mar 15, 2006
    HI blooddiamond,

    I would like to welcome you to TP.

    I agree with others that some of the replies you have received seem to be less than supportive but I would like to assure you that any time you feel the need to express your feelings...whatever form they take...regarding your situation, there are people here who will understand.

    Take care and dont stop posting on here - we all need each other on here - welcome aboard.


  8. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006

    Assuming you are correct, and your views on this subject (whether residential care is the only option) are academeic, as other have said, it may be time to switch gears and find the most appropriate placement for your mother. To that end, are you familiar with the The Commission for Social Care Inspection (CSCI) There you can search for homes in a given area and read inspection reports. You might, as a point of comparison, read the report of the respite home that was so unsatisfactory. There are also many many threads on the boards about how to choose a nursing home. Generally the advice can be distilled into: no odour, welcoming and caring staff and "open door" visiting policy. Furnishings, although important, come quite far down the list. Everyone has different concerns though: some of us have to ensure that the facility is secure, which doesn't sound an issue with your mother.

    I would also like to reiterate Germain's suggestion: Barnet like other local authorites do have council owned extra care or very sheltered facilities that may provide the support that both your parents need. In fact, since both your parents are disabled and elderly they should be placed quite high in the queue. Also, some supposedly private owner/occupier facilites may have several unit that have been purchased by "social landlords" such as the Housing 21 group for rental to people such as your parents. The Elderly Accomodation Council has a very useful website which allows you to search for this type of accomodation as well as for care homes etc. Theoretically, this will also allow to only search fro places that have vacanicies (although since this relies on the individual suppliers to update the database this may not be accurate).

    I assume you're already familiar with Barnet's website. This is the page for sheltered housing

    I feel we may have got off on the wrong foot here. As a collection of (very much) individuals we all have something to bring to these boards. Some of us are better at offering (virtual) tea, sympathy and an understanding ear, while some of us are better at the more practical side. All of us, though, are battling our way through the sometimes stormy sea that is dementia. Our aim is to keep our heads above the water until we reach the shore. In order to do that we sometimes have to let go of some things (beliefs, preconceptions, assumptions) which prevent us from grabbing an available life-line. The virtue of a board such as this is you can take what you need from it: if you need validation you will find it here, if you need a sympathetic ear you will find that too, and if you need an honest opnion that will be forthcoming as well. However, you don't have to take any of those things unless you wish, but pleased be assured you will always be very welcome.

    Best wishes
  9. my little girl

    my little girl Registered User

    Aug 23, 2007
    Dear Blooddiamond

    I am so sorry you are having to feel like you do. I have not given any advice cos I have not had to care for anybody with dementia but watched my mum care for my Grandma so know a little what it is like. I also appreciate your last sentiment and agree that it is a beautiful analogy. My Grandma died almost 10 years ago and I still haven't said goodbye either. However, you are lucky in a sense that your mum is still with you both in body (& spirit to a certain degree). She has just changed trains to get to where she is going.

    As for the care home situation, my Grandma always told me she didn't want to go into a home & in fact when I was 14 made me promise that I wouldn't allow my mum to ever do it. It was through seeing how she could no longer look after herself and seeing the effect caring for her was having on my mum that I felt I had no choice but to break that promise. (I still feel a little bit guilty about it.) However, the home my mum & dad chose for her was fantastic & I know that she was cared for by the wonderful staff for her entire stay. They aren't all bad!

    Take care x
  10. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire

    I think you have got a bit of stick from this site, which is most unusual.

    I am sure everyone means well, they always do.

    Just for me to say I can't advise. I have no brother or sister, no family at all to either help or hinder. It can be very loney in such a situation, but on the other hand there are no arguments.

    Sit down with your brother, forget who does the most work, the most visiting, that doesn't necessarily indicate the most caring, cast off past arguments, and get down to what is best for your mum and dad. It seems like a care home is on the cards for your mum, so go together to look at some, at least 4. There is some good advice to you on this thread. The "nose test" is the first to apply. But don't be too prescriptive in what you are looking for, bear in mind what your MUM wants, not what YOU want. We all want a hotel with excellent food, en suite shower, lots of mental stimulation, trips out, etc. You won't get it all, and when, like me, you have chosen a home with lots of mental stimulation and you find your mother isn't remotely interested in taking advantage of it, you wonder why you bothered. She is more interested in the other people in the home, has "made friends" with a totally unsuitable woman, but she is happy about it. The woman had been in the hospital with her previously, so familiarity was important to mum.

    At first, she complained about the food. Now she says the food is good. Then she complained about the staff, they weren't nice, now she has friends amongst the staff. She complained that no-one did her washing, now they are great at washing. It all takes a little time.

    But don't take offence from some of the mails on this thread. We all know you are in a **** situation, we are lots of us in the same situation, and we just don't know what is the best way to turn. At the end of the day, you can only do your best. You can't do any better.

    Hope it all turns out okay. Let us know.


  11. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    #31 Margaret W, Sep 9, 2007
    Last edited by a moderator: Sep 14, 2007
    Re missing items, I forgot to say that my mum spent six weeks in the most fantastic ward of the NHS possible, [From Bruce: edited to remove name of hospital], where every aspect of her care, both medical, physical and emotional was second to none. I'd have loved her to have stayed there forever. I have written to the PCT to commend the unit, and all the staff. Needless to say I've had no reply!

    But they did lose her glasses (£80) and her top dentures (£200) and two brand new nighties, clearly labelled with her name. And she did come out of there with a strange nightie and a strange cardigan, and a pair of knickers with someone else's name, despite me doing her washing for her while she was in there. So nowt is perfect.

    Love to all

  12. blooddiamond

    blooddiamond Registered User

    Many thanks to all of you who have encouraged me to keep writing in. I really appreciate it.
    I returned back to Germany a couple of days ago and got in contact with social services over them providing more help for my Father.
    Mum just lays in bed now most of the time. Home help comes in for about 20 mins in the morning to get her up, washed and dressed and 20 mins in the evening (about 5pm) to wash her and put her to bed.
    During the day she sits in her chair and is very little trouble at all. She does suffer from spasms every so often so when she has her coffee (which I seem to be the only one who remembers she likes coffee) you have to hold the cup or beaker carefully or she will knock it over. But generally she doesn't move or complain much at all. But while I was there I saw that if you spoke to her she would respond, though sometimes in a very confused way.
    My Dad was coping ok in a general way, but clearly he is confronted with it 24/7. Seeing as my Mother is so passive and my thoughts were that if Dad is provided with more help by SS then there should be no problem in keeping Mum at home for a little longer. I accept that she will have to go into a home at some point, but it seemed to me that surely the better option was to try and keep Mum in her own environment, she is happy there and even said to my Dad on the day I returned to Germany that she liked this home and didn't want to move.

    On returning to Germany I contacted SS and spoke to the woman in charge of my Dads case. She was extremely aggressive towards me and said that it was sad that I had never done anything to help my Father and Mother and that as I lived in another country, she hinted that I should back off from even passing comment!!!

    My brother had clearly spoken to her and the process for putting Mum into a home has progressed.
    As I said in a previous post, my thoughts and feelings seem academic now and she will no doubt be in a home before Christmas now.
    I just wanted to give my Mother every chance she deserved, my Father keeps saying he wants the best for her and I know deep down he wants her to stay at home, but I think he is tired of the constant caring. I understand his position and have said again that i will support whatever he decides whether I agree with it or not. But my brother is history.
    I have never understood his desire to put Mum in a home as long ago as Five years! His disagreenment that we should try drugs like Ebixa (which I fought for and got for her and which brought her back quite a bit for around 18 months)
    However, the lastthing I want is to make life impossible for him and so will have to back down, accept that nobody wants to try getting more help in to make their life easier and keep my nose out of it.
    I feel I have lost Mum for good now, I know she had no idea who I was, but during the week I stayed with them 24/7, I was able to wake mum up mentally and get her talking for longer than single words, to actually engage in some conversation.

    That is the current situation, I have also done a lot of fighting on my fathers behalf and know in my heart I have done the best I can for him as well, but I feel empty right now and don't know how to proceed anymore, I have never been one for giving up, yet I have no choice and I feel so awful, perhaps it is indeed time to cry.
    Many thanks for listening to me and for all the helpful comments as well as the more forthright ones.
    It is always difficult to explain the whole story in this medium, but I have tried to give as clear a picture as possible in my muddled way.
  13. Cate

    Cate Registered User

    Jul 2, 2006
    Newport, Gwent
    Hi Blooddiamond

    I am so very sorry that things have not worked out the way you wanted, and I totally understand you wanting to keep mum at home for as long as possible.

    However, as you say it seems that the decision is made to move your mum to a NH. The very best you can do for your mum now is to ensure she is moved to a good one. I hope you can stay in touch with your brother and Social Worker to make sure this happens.

    There may be one small positive in this situation, and I'm sure right now you are hurting, and may not want to see any positive in this situation. But it seems that you managed to get quite considerable responses from your mum with stimulation. You may just find that in the right NH they will continue to do so too, this is why I suggest that you ensure she goes to the right NH. It could be that your dad was so ground down with the day to day care that he had little or no time to actually spend time with mum in conversation, trying to get her to do small tasks, given the right nursing home, one which organise activities geared to those with dementia she may just have slightly more stimulation than she was getting at home.

    From your dads point of view, remove the day to day grind, and he will be able to spend longer periods with your mum concentrating just on her. It will also benefit your mum greatly if you ensure that familiar things from home are moved with her, any furniture that dad can spare such a chair she might sit in at home, family photographs, ornaments etc., anything that is familiar.

    Please keep in touch.

  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear blooddiamond,

    I know how you have fought to keep your mother at home, but one thing you can`t fight are the ravages of dementia and the increasing frailty of ageing.

    Even though your mother is so passive, 20 minutes care morning and evening leaves a long time during the day and night when your father has full responsibility.

    She has to eat and drink, be toileted or changed and generally cared for and your father is tired.

    I do sympathize. It is hard to let go. But sometimes the inevitable has to be accepted, as you now seem to be doing.

    Take care xx
  15. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear blooddiamond,

    I'm so sorry. It was unfair of the SW to attack you when you have obviously done your best for your parents.

    Please don't think you have lost your mum. Once she is settled in her care home, you will be able to spend quality time with her, without having th worries of her personal care.

    It will also give you chance to spend more time with your dad, who must be feeling devastated by this. Give him all the love and support you can, he's done a wonderful job caring for your mum, and must be exhausted. Perhaps he could come to you for a short holiday whan your mum is settled?

    My husband is in hospital just now, and there is a possibility that I will no longer be able to care for him at home, so I understand how your dad must be feeling. I also know how upsetting it is when his sons insist on talking about care packages, home conversions, etc. Upsetting because I want him home, but know that with all the care packages in the world it would still be me, and I can't lift him.

    You've done your best, now is the time to be positive and plan for a future that will be the best possible for both your parents.

    Love and best wishes,
  16. mel

    mel Registered User

    Apr 30, 2006
    Dear Blooddiamond
    Thanks for keeping us in the picture.

    I fully understand that you must be feeling at an all time low at the moment and i'm so sorry to hear you were attacked by the social worker.

    It's so hard to accept a new chapter in your mum's care......but as other people have said there really are some marvellous care homes around which will offer the stimulation that your mum needs.

    You have done the best you possibly can for your mum but I really do understand your emptiness right now.

    Please take care and keep will get a lot of support on here.

    Love xx
  17. Sandwichboy

    Sandwichboy Registered User

    Sep 11, 2007
    South UK
    Home care is just not viable (especially if there is a need for hoisting) and medical input as your mother's health becomes more of a challenge. Being in Germany, you're not going to be any use on a day to day basis so I don't think that you can call the shots and expect your UK sibling to amend their stance, callous or selfish as you may feel it is. If you feel strongly move home and give up YOUR life
  18. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Sandwichboy, you are new to this forum, and probably have not picked up the flavour and atmosphere.

    We aim to be caring and supportive. Even if we disagree with what someone has posted, we try to express that disagreement with politeness and consideration.

    Blooddiamond is coming to terms with a difficult decision. Addressing him in the manner you did is not helpful.
  19. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    leigh lancashire
    Dear Blooddiamond,you have done your best in trying to get the care your mum needs and the help dad needs.The fact that you live in a different country gives the S/W no right to speak to you as they did.Whatever decisions are being made make sure you are a part of them and have no qualms in voicing your opinions.She is your mother after all,no matter where on earth you live.take care elainex
  20. mel

    mel Registered User

    Apr 30, 2006

    Sandwichboy............I find your input into the discussion incredibly insensitive and insulting....especially when directed at a member who is clearly at the end of their tether!!!!

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