Wanted: Strong brick wall to bang head against

Discussion in 'ARCHIVE FORUM: Support discussions' started by burfordthecat, Apr 18, 2008.

  1. burfordthecat

    burfordthecat Registered User

    Jan 9, 2008
    1,707
    Female
    Leicestershire
    Hi Everyone

    I'm feeling cross, frustrated, worried and very weary. Today I had a phone call from SS who wanted to fit dad a grab rail. His bedroom has two steep steps down from the landing and he has already fallen down these once and really hurt his back. SS did their review a couple of weeks ago and dad agreed to having this rail fitted. Said that it was a good idea.:) So I rang dad this morning with name details of person who would come over today and fit it for him. Well, it was....light the touch paper and stand well back:eek: Conversation went as follows "I never ever agreed to having the rail fitted. I don't need it. This is your doing again, interferring and poking your nose in. Just leave things as they are and don't keep stirring up trouble.":eek::(. End result, when the man from SS arrived dad told him to "*iss *ff, I don't need the rail so you can just take it away again":eek:

    It gets better, dad received his letter to attend an outpatients appointment regarding his memory. Well, no chance whatsoever of getting dad to see the consultant. I have had to ring (many times:() and write a letter to get the appointment cancelled. The consultant said that all he can do is to close the case. If dad needs to be seen in the future I will need to start back at his GP again. Ho hum! Don't get me wrong, I have no complaints with dad's GP, she used to be my GP when I was a child and she has been really helpful. It just all seems to go wrong when it means that dad has to actually do something.:mad:

    I feel as though I am slowly sinking in a never ending pile of paperwork for dad. I have received the AA claim pack this week, so I will try to get that done tonight, together with his tax return. I just can't keep on top of everthing for my dad as well as look after my two young children and husband who also need my time. I am finding that I now have to visit dad in the evening (just can't fit it in during the day with pre-school and school drop offs and collections), maybe not leaving my house till 9pm and getting to dad's for 10pm. I then spend a couple of hours with him and get back to my house for about 1am. Not ideal as both of my children are "early birds" and are up every morning at about 6am.:eek:

    I feel as though I am trapped in this situation. Dad will not accept help or support from anyone but me. He is my dad and I love him very much so there is no way I could stop caring for him. Why does he have to make it so difficult? I could never walk away from the situation but sometimes, I just don't know how and if I will be able to carry on like this.

    Sorry, just having a bit of a rant. As I'm sure you will all know, at times, it gets too much for us all.

    Thanks for reading

    Burf x x

    PS I know that today is a bad day. This is the second time I have tried to write this post. First time, I had finished and was just checking it when, hit "that key" and it disappeared, without a trace. Doh! :mad:I really really hate it when that happens.
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Burf

    nightmare indeed!

    Sometimes we just reach a point where we have to let circumstance sort things out, and this especially seems to be the case with dementia at a certain stage.

    It sounds awful, but when there is nothing we can do, then we have to wait to pick up the pieces and try again.

    That doesn't make it comfortable, and it shouldn't stop us trying things, but I have found there is nothing more unmoveable that a person who has dementia and won't cooperate.

    From their point of view, why should they cooperate? There is nothing wrong. It is just people interfering with their lives....:(
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,894
    Kent
    Dear Burford.

    Your father and my husband would get on well. The only difference is I`m here with him 24/7 and you have other commitments and responsibilities.

    We have had the changes of mind, denials about previous agreements and cancelled appointments.

    I know you don`t want to walk away from your father but I`m afraid it is the only solution, to enable him to see he needs help. If you are at his beck and call, of course he doesn`t need help, you are there to help him.

    You should not be getting home a 1am. when you have a young family. Actually even if you didn`t have a young family you should not be getting home at 1 am. Do you need to spend a `couple of hours` with him. Perhaps half an hour would be enough to see he is safe, see he has food in, and anything else he needs.

    Then say `Goodnight dad, sorry I can`t stop longer, I `ve a pile of ironing to do` or washing, or preparation for the next day, or perhaps you could even be entitled to an early night.

    Tough Love Burford, Tough Love. ;)

    Love xx
     
  4. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Burford, you can borrow my brick wall if you like - it's the one with the dints in! :rolleyes::)

    So much of what you posted resonates with me ..... and I have to wholeheartedly echo what Sylvia says:
    You wouldn't believe how I have mastered cleaning the loo, clearing the fridge and the bread bin, rounding up laundry and checking on meds - whilst rustling up a hot meal and getting out of mum's quicker than a contender for the sprint relay .....:cool: I've had a couple of years of existing on next to no sleep (mostly emotional rather than practical for me :eek:) .... you simply cannot go on like this .....

    What if any help have you got in terms of daycare? Don't tell me ..... dad won't have it????? And the big message I gave to CPNs last week was 'not the time I spend with her, but the time I spend on her .....' If I only showed the same dedication to our paperwork, housework and cooking as I do for her ... by the time I'm done at mum's or with mum's 'affairs' - I have no inclination to start playing domestic goddess and 'quality time mum' at home ...... :eek:

    Hugs, Karen, x
     
  5. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    Hello Burford

    Sorry you are having a bad day. Here's that brick wall :D
    [​IMG]

    I think if you read your post about anybody else, you would know something needed to be done. It all seems so unfair that this illness is so demanding on so few.

    You are trying to protect your father from risk but you are putting yourself at risk by overstretching yourself. The thing about us carers is that so many people can depend on us. The one with the illness (if indeed it is one, it could be more), children, partner, ourselves.

    Meantime sending a hug and best wishes

    Helen
     
  6. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    5,543
    Might be of some help

    Well, no chance whatsoever of getting dad to see the consultant. I have had to ring (many times) and write a letter to get the appointment cancelled. The consultant said that all he can do is to close the case.
    Hi,
    Because Ron is somtimes not himself, the consultant came to our home to see Ron. I am sure you can push for this to happen.
    Hope this help's, ask your GP.
    BarbX
     
  7. burfordthecat

    burfordthecat Registered User

    Jan 9, 2008
    1,707
    Female
    Leicestershire
    Thanks Bruce, Sylvia, Karen, Helen and Barb

    Sorry that it has taken me so long to post, I've been doing battle with the AA form for the past two evenings and by the time I had finished, my brain had turned into mashed potatoe:eek:. Anyway, it is now in the hands of the Royal Mail (which does not fill me with much hope);), so we will see what happens.

    Bruce, that is just so right, you speak through the eyes of my dad.


    Hi Sylvia

    I know what you say makes sense, but can I do it? Honest answer is no:(. But it does look as though circumstance which Bruce mentions may well come into pay. We are having a 17 day holiday with the kids in France during July. I have made numerous enquiries as to what help I can get for dad whilst I am out of the country. Well, the long and short is "not a lot". As dad will not accept any outside help there is little that I can put in place. Do I feel happy about it? - no!. But it is also not fair to expect my children not to have their family holiday. I will be still ringing dad each day to make sure that meds are taken correctly. If there is any other major crisis - don't really want to have to think about that at the moment. I will be letting SS know that I am away and "they" are in the driving seat.

    Karen

    It sounds as though you and I are in very simular situations. It is so very very hard when we are pulled in so many ways, all at the same time. I guess from your post that your mum lives on her own. Do you get any support from other family members or are you on your own, very much like me.

    Helen

    Lol, that was the brick wall that I was after, hope that I don't knock it over.:D. Thank you for your support.

    Dear Barb

    Thank you for your advice. I feel that it is the only way that I will ever get dad assessed. There is no-way that he would go to a clinic. Doubt whether I could even get him as far as the car never mind anything else.:D I did say to the consultant that the only way forward was a home assessement. He seemed to be OK about this providing that the GP requested it in the referral letter.

    Anyway Barb, how are the holiday plans going?

    Love to all of you

    Burf x x
     
  8. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Hello Burf,

    Not been around for a while so catching up!

    Sorry you're having such a tough time at the moment..the others have given you such good advice..but I know you feel between a rock and a hard place abd it's not a good place to be!

    I thought Bruce's comment was spot on! You cannot force change on someone who doesn't want it. You cannot control this situation.With the best will in the world all you will do is wear yourself out..and then you'll be of no help to anyone.
    As a caring person it is so hard to stand back and watch those we love struggle..but sometimes it's the only way.
    Just wanted to say I understand..and add my support to the rest!
    [​IMG]

    (I like this smiley)

    Love gigi xx
     
  9. burfordthecat

    burfordthecat Registered User

    Jan 9, 2008
    1,707
    Female
    Leicestershire
    Hi Gigi

    I like it too, made me smile. Thanks for your support

    Love Burf x x
     
  10. andrear

    andrear Registered User

    Feb 13, 2008
    402
    Yorkshire
    Hi Burfordthecat

    You can have my lovely brick wall to use anytime you like. I bought it last week for the garden and its got 3 jugs which water drips from!! Its supposes to be a water feature but closing ones eyes it really does take your mind off things.

    We went to Oz for a few weeks last Christmas and it was initially a nightmare fore me. Mum and Dad, Dad in particular would not let anyone into the house, this is his way of dealing/not dealing with things.

    I arranged beforehand meals for the freezer but that was as much help as I could be. I asked my lovely brother to see to them. He turned up on Xmas eve only. When I got back - well, I'm not going into that but to say I was distressed is an understatement. Yet, I have to say, I'm planning my next holiday because, we as a family, really do need it. And yes, there is lots of guilt associated with it but at the end of the day I need to still be strong.

    I go to my parents each and every day, although I do not go on a weekend. And I pay the price on a Monday. But my GP made me realise that I need to prioritise my day more and not be there when dad insists I am. Now its a bit better, but only a bit. But for you, don't put yourself in a dangerous position being out so late at night. You have your family to look after too. And more importantly YOU.

    Love Andrea
     
  11. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    Hi Burfordthecat

    I can sympathise with you 100%. Back in the days when mum still had some understanding, there was no way would she see a GP let alone a Consultant.

    You need to request that the Consultant make a domicillary vist to your dad at home, its a bit of a cop out saying he will close the case. Yes I know they dont like doing home visits because they can see more people at their clinic, however needs must in your case. I dont see that he can refuse you.

    We arranged for the Consultant to visit mum at her home. We met him outside, let him in (because mum wouldnt have opened the door), introduced him, and frankly did a runner!!

    We waited for him outside, expecting that mum had been totally non compliant, but no, she was sweetness and light with him. He prescribed Aricept (which she wouldnt take, but thats a whole other story), but at least mum was 'on his books'. He used to visit her at home every 6 months or so after that.

    It may be worth a go.
    Good luck
    Cate
     
  12. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Well, if I discount the once every third blue moon visit from mum's sister :mad: ....(but only when Jupiter is Aries or something else that spurs her into bothering!!!!!):D - no there is no-one but me ..... my hubby and teenage son are the one's take the fallout and look after ME!!!!! And the angst because it should be me there for them :( ..... but I don't need to tell you that do I?)

    If it's any crumb of comfort ... I have to say the paperwork swamped me for a time (quite a long time actually when I had to register EPA) ..... but once it is done it really does make life a whole lot easier .... deep breath - get organised .... good filing and recording system ... I now schedule time on a weekend just to dedicate myself to mum's 'accounting' ..... anything that arrives in the post midweek that doesn't need immediate attention - I just earmark for that 'slot' ...

    Andrear's quote jumped out at me .....

    When I was just about going under last year and finally succumbed to seeing my GP he alarmed me with talk of 'risk management' .... I could not see how on earth I could not jump in the car and check on mum if she did not pick up the phone ..... "assuming" she was asleep - or had nipped out to the corner shop just doesn't fit ....... but slowly, that doctrination is fitting .... If mum is adamant she will not have carers, consider residential care, even for respite, ..... then I cannot be expected to pick up the emotional and practical tabs at the expense of my own family to suit her every whim . .... I am doing what I can ..... and probably more than should be expected at times ...

    Wow? Was that really me saying that?:eek::)

    Karen, x
     
  13. harvey

    harvey Registered User

    Aug 10, 2007
    71
    Burfordthecat

    How I symphathise with you! We know just how you feel and we have just had a conversation about my MIL and how everything but everything is a fight! She knows exactly what she wants and when she wants it. If it cannot be done immediately she obsesses about it and every phone call or visit it is brought up. At the moment it is the strimmer, she wants my husband to take it for servicing, NOW!
    She wants to go home to Northern Ireland one last time (she is 87) and we have spent hour after hour on the net trying to find something acceptable to her. It is almost an impossibility, the area she wants to stay is very rural and short on accommodation, she cannot accept this. She wonders if the nursing home where her aunt lived might give us some rooms!!!!!! you can imagine my husbands reply:mad:
    We spend hours on the net looking for her latest 'wants' it seems every evening we are looking for something. We both work so we have little time for ourselves. I send meals over for her but there is always something wrong with some part of them.
    The paperwork mountain really gets me down. We have POA but not registered, she is well aware of how much money she has although she is unable to add the totals of different accounts. We have to deal with every aspect of her financial affairs except drawing cash out of the bank and signing cheques. My husband has to write them out and she adds her signature. She is unable to leave the house without one of us. We know she destroys paperwork (burns it in a bin in the garden!) She has always been selfish and demanding but it just gets worse. She has a fridge full of potatoes and a freezer full of bread!!! We have tried pointing out that she does not need more but she made it clear she would decide. She is only able to use the microwave now and sometimes the frying pan!! That is scary but as her doctor told us we must ditch the guilt and step back or we will end up in a heap! Easier said than done. Although we do worry, we have managed to do as Brucie suggests and just wait to pick up the pieces. She is very determined if she gets an idea into her head and wild horses would not stop her. She is not one to take advice and never has been, she will make her own decisions and to hell with the consequences.

    Hope you are having a better day today:eek:
    Polly
     
  14. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    5,543
    Plan's going well for hoilday

    Hi Burf,
    Getting there slowly
    Want to book for June 4th if possible.
    Bring it on.:D
    Barb & Ron
     
  15. burfordthecat

    burfordthecat Registered User

    Jan 9, 2008
    1,707
    Female
    Leicestershire
    Thanks Andrea, Cate, Karen, Polly and Barb

    Andrea

    Yes, I can really relate to that. I find that sometimes the needs of my dad overpower the needs of my own family. I do try and step back and see the bigger picture. It is really hard to do but I am sure that if my dad knew how much my "caring for him" was affecting me,his son in law and his lovely grandchildren, he would be devastated. God, don't you really have to hate just what this disease does to everyone concerned.:mad:

    Again, I can only agree with you about keeping "me" safe whilst I am out and about visiting dad. Sorry to say that I have no choice. I can't fit in a visit to dad during the day, due to commitments to my children. I go once both of my "babies" are asleep and visit dad. The reason why I don't do a quick visit is that I do not see him every day. He really enjoys seeing me as I think that most of the time he does feel quite lonely. I know that it is not exactly safe to be driving on my own so late on but in some ways I do find it quite relaxing. The roads are quiet, I can have my own choice of music in the car(played as loud as I want), so in some ways I can use this time as "me time", a chance to chill out after the stress of the day. My husband is also very supportive. I ring him from dad to tell him when I am leaving and he ALWAYS waits up till I get back home. Great support, or what:D

    Hi Cate

    Yes, I do think that the route you have taken with your mother is the same as I will need to take with my dad. At the moment, he is still very aware of what is happening around him and I don't think that he would accept even a home visit. With regard to taking medication, my dad has already stated in no uncertain terms that he will not take any medication to help with his memory problems:eek:. My feeling is that if that is the only thing which an assessment can achieve, then for dad it is currently as waste of effort, possibly causing more stress(for all concerned) than gain. Needless to say, I will be watching the situation closely and if things change for the worse I will be the first one jumping in and getting an assessement done.

    Dear Karen

    You may well laugh, but I already have a good filing system....it is a plastic tub on top of the microwave:eek:. Laugh you may, but it works. Anything which arrives in the post gets read and placed in said tub. A note is made on the fridge(extended white board) telling me what I need to do. I do just feel that more is arriving on the door mat than I can actually deal with. Believe me, I am used to dealing with stress and pressure of work. Before becoming a full time mother I used to work on the Stock Market:eek:, not as a dealer but doing back office settlements. I loved that job, but the hours and pressure just did not fit with having a family, hence since 2000, I am a full time mother and carer.

    Hi Polly

    Oh, it does sound as though you too are having a really hard time of it, my thoughts go out to you and your hubby. Just a thought, you say that you prepare her meals for her. Have you considered having meals on wheels. My dad was forgetting to cook for himself and was losing weight. I contacted Social Services who then did a home visit. It was agreed that he could have the meals on wheels service. Well, this was back in Feb 08 and all is going well. Dad now gets a hot meal delivered each day and really enjoys it. Eventhough he was very reluctant at the start, he now says that he should have done it years ago.:eek:

    Hope that you can get something sorted for your MIL for her trip to Ireland

    Thank you for your support

    Hey Barb

    Great news about the holiday. I bet you are just so excited. Remember though, getting ready for a holiday is a whole extra load of work and preparation...On getting back there is enough washing and ironing to last till next year....but the bit inbetween.... well it makes it all worth while:D. I really do wish that you and Ron have a fantastic holiday, you deserve it. Go, enjoy and s*d everything else till you get back.

    Love to you all

    Burf x x
     
  16. andrear

    andrear Registered User

    Feb 13, 2008
    402
    Yorkshire
    Hi Burfordthecat

    Again, I can only agree with you about keeping "me" safe whilst I am out and about visiting dad. Sorry to say that I have no choice. I can't fit in a visit to dad during the day, due to commitments to my children. I go once both of my "babies" are asleep and visit dad. The reason why I don't do a quick visit is that I do not see him every day. He really enjoys seeing me as I think that most of the time he does feel quite lonely. I know that it is not exactly safe to be driving on my own so late on but in some ways I do find it quite relaxing. The roads are quiet, I can have my own choice of music in the car(played as loud as I want), so in some ways I can use this time as "me time", a chance to chill out after the stress of the day. My husband is also very supportive. I ring him from dad to tell him when I am leaving and he ALWAYS waits up till I get back home. Great support, or what

    I'm pleased in some ways that my dad doesn't realise just what he is putting me and my family through because this person I see each day is not my dad. My dad was loving, kind, caring and idolised my lovely mum. Those days have now gone but yse, I agree this desease is doing lots of damage to my family it is also stripping my dad of his personality, warmth, generosity and his sense of humour.

    I am so glad that you call your husband when you are ready to leave. Unforuntatley, its not about calling someone, it really is about taking great care of yourself in such stressful situations.

    I have found that many a time I have set off from my parents home and have found that I have had to stop before getting back on the motorway. Sometimes because I have panick attacks (brought on by my current situation) and other times I know that my concentration is not what it should be (until Jon had his last operation I was setting off at 6-630a.m). Please don't see this time in the car as your ME TIME because, you are not actually switching off. I understand you have to work around your family and credit to you for that, but me time is something completely different. I know, becuase I have had to learn the hard way.
    Take care
    Love Andrea
     
  17. Short girl

    Short girl Registered User

    Mar 22, 2008
    60
    Hi

    You have my full sympathy - it is so difficult to know what to do and very hard to try to back off a little, but it sounds as if it is something you need to do for the same of your health and your family life. Tough love I suppose, being firm is difficult, I get guilt trips terribly when i've got cross with Nan, but that is what it takes at times.
     
  18. burfordthecat

    burfordthecat Registered User

    Jan 9, 2008
    1,707
    Female
    Leicestershire
    Hi Short Girl

    Thank you for your support. I know that at some stage I will need to let circumstances take control of the situation. However, rightly or wrongly, I feel that now is not the right time. I will continue to support my dad as much as I can, whilst I am able. I do believe that whilst we are having our much earned family holiday abroad, circumstances may well change the situation. I have tried to get private support for dad whilst we are away. But what is the use?....if he won't even accept SS providing a grab rail to prevent him falling , will he accept outside help whilst I am away .. NO...NO and absolutely NO. It is not much comfort, but at least I tried. I will not be thinking like that when I come back from France and need to pick up the pieces....yet again... Hoh hum, life as a career can be awful when the one who needs care will not accept it:(.

    Love from Burf x x
     
  19. Short girl

    Short girl Registered User

    Mar 22, 2008
    60
    Hi Burf

    I hope that you enjoy what will be a well deserved holiday.
    Your Dad is lucky to have your support and care, it's so hard when they are adamant they don't want help, sometimes it gets to crunch point before it's accepted and sometimes easier to introduce in stages.
    If I might inject a bit of humour here (this is always a good tonic)when I read your line
    'will he accept outside help whilst I am away .. NO...NO and absolutely NO' the Amy Winehouse song re-hab sprang into my head, with slight alteration to the words!
    Take care
     
  20. burfordthecat

    burfordthecat Registered User

    Jan 9, 2008
    1,707
    Female
    Leicestershire
    Hi there Short Girl

    LOL. Many a true word said in jest.:D Thanks again for your support, I really appreciate it.

    Take care

    Burf x x
     

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