Aaaaargh! Pain of the day

Discussion in 'ARCHIVE FORUM: Support discussions' started by Brucie, Feb 17, 2004.

  1. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Do you get those things happening you want to tell someone about to get it off your chest... only there's no-one there to tell?

    That's what Aaaaargh! Pain of the day is about...

    Here's my starter for ten.

    My wife is in a superb care home but can only crawl for the past many months. The manager of the home has found the perfect chair [see elsewhere in the forum as there's a picture] and my wife is happy in it.

    We can't buy it until we get permission, because the attached and necessary lap belt may be construed to be abuse [as restraint]. It actually saves her from injury by falling out.

    Can we get someone to agree that we can buy it for her? All they have to do is say yes! [e.g. consultant, Care Standards people]. NO! Never there when they are needed.

    So she is reduced to crawling around again, and injuring herself by falling against things.

    All together now:

    Aaaaargh!
     
  2. kareng

    kareng Registered User

    Feb 5, 2004
    17
    Bristol
    How frustrating! There seem to be so many barriers around to common sense these days...
     
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Jan spent the whole visit yesterday on her knees but face down on a mattress when I knew that the chair would improve her situation massively.

    Yes! immensely frustrating, but now resolved thank goodness.

    Such a shame it can't just happen and save adding extra pressure to the carer and patient [and the home!] when it is not needed. I do appreciate the need to protect people in care, but a shame that those charged with that can't use their heads sometimes, and be just a little less concerned with paperwork and actually get some hands-on experience!

    Now I just need to wait a couple of weeks for the chair to arrive!
     
  4. Angela

    Angela Registered User

    May 28, 2003
    151
    Wales
    Good thread

    Ive got a pain for the day..... actually for the whole of my working week!
    Blumming DLA and AA foms that I help lots of people to fill in

    Why are there not more specialist questions for people with mental health problems?

    I often put on the end of the form... HELLO THIS PERSON HAS DEMENTIA! ok I dont, but thats what Id like to do, the questions are so NOT appropriate, and yet if you dont answer them, then the department dont see the need for the entitlement!?

    I thought by typing this I would feel better, but I dont I feel worse!!!!!!
     
  5. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    When I sent the Enduring Power of Attorney forms to be registered at the Court of Protection, I left section 6 [about providing a date for giving the patient a copy of the form to read] blank and in the comments section at the end I wrote that since she could no longer see, talk or comprehend, I had omitted that step, but had told her, verbally instead.

    a month later the forms sailed back telling me I had forgotten to complete section 6. Oh, yes, they had cashed the cheque on receipt, of course.

    You may as well give in with these things. I wrote in the date I told her the news, sent it back, and 3 weeks later the registered form returned to me.

    Moral: they don't read what you write, but just make sure you write anything in all sections as they clearly look for blank space
     
  6. Angela

    Angela Registered User

    May 28, 2003
    151
    Wales
    Ah EPof A
    Now those things!!!!!
    Some of the forms and info are 27 pages long would you believe?!
    When I set up the first Epof A, the local solicitor gave us the wrong forms, which then took the public guardianship office 5 weeks to inform us of, then the whole process had to be started afresh.
    Some bodies.... fair does, they are so far removed from reality!
     
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Angela
    regarding your comment about not feeling better after writing the note....

    Ever since Jan was diagnosed, I have kept copious notes [280 pages to date]. At first it was her symptoms, in the [vain] hope that someone would be interested and that it would help provide a diagnosis. Then it became habit and, like when you select Lottery numbers and are then afraid to change them, lest they come up, I have kept on writing. One day I will delete them, or maybe even publish something based on them.

    At a later stage I began to write about my situation and feelings too, and I have found that a great help. Writing frustrations down is something that works, but only after doing it for a time. I find now that I write down one of my Aaaargh's, and it does help. But it is a bit of a learning process!
     
  8. Lynn

    Lynn Registered User

    Mar 1, 2004
    8
    Advice from experienced carers

    Hi to you both Angela and Bruce
    I only found this site 2 days ago and already find it an enormous help to speak to others sharing similar experiences. As both of you seem to have a wealth of experience in the field i wondered if I could ask some advice. I am a nurse and so have a great understanding of the clinical aspects of my moms dementia and the impact looking after her has had on the whole family, particurlary my dad. He had been looking after her at home with some great help provided by social services until she went into an EMI Unit a week and a half ago. What I am really struggling to deal with is the differences in feelings and opinions of us all who love her so dearly.
    I have 2 wonderful sisters each married with their own families and a father whose care has surpassed anyones expectations. The situation at home had become unsafe for them both and late last yr mom ended up being sectioned for a month because of this. She was then returned home and he continued to "manage". We were all very worried for them both and had regular phone calls in crisis situations. Now we have been extremely lucky to find a delightful home in Worcestershire and mom seems to be "adjusting" but is very tearful. She has no verbal language any more which is devestating in a strange environment. My dad and older sister visited yesterday for the first time since her admission (dad felt he should take her home and I think so did my older sister before they even visited). The whole visit was extremely traumatic for them all including mom as there was lots of tears and struggles as she seemed to blame them for her predicament. I dont know how I can help or advise them because they ended up taking her out for a trip which then made it very difficult for her to go back later. She doesn't behave quite this way when I see her altho she is tearful but we manage somehow to distract her and remain "cheerful" saving tears for the journey home. I understand my dad is heartbroken but am not sure how to help him get through. We talk every night after I have called to check she is oK and I have suggested he seek support from his gp or support groups but at the moment he wont

    Can either of you help please I am worried that the seperation will be as harmful to his health as the full time care he was providing

    Kind regards
    Lynn
     
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello Lynn

    First of all, the situation from your Dad's side. Besides the love that overarches everything, he will also feel overwhelming personal responsibility, helplessness, frustration, as well as guilt and - perhaps unrecognised immediately - anger.

    Anger at the disease, anger at the support services for never being able to do enough, anger at himself for letting his wife down when she needs him the most, anger at God if he believes in such a thing. It took someone telling me I was angry for me to realise that I was, very. He may well even have fleeting anger at his wife for leaving him [mentally as well as physically], although he will realise that it was not her doing.

    In caring for her he will have become as much dependent on her as she was on him - possibly more so. The patient can become the raison d'etre for the carer.

    The thing that may surprise you is that your Dad probably won't think the care he has provided is anything special; he will simply have done it, and absorbed each new task as an extension of what a spouse does for their partner. It took a number of people telling me that what I have done for my wife is special in some way, to make me realise that perhaps it has been. Not that this helps overmuch because at the end of the day, one can't cure the problem. The best one can do is make the inevitable decline as manageable as possible, and as painless as possible for the patient. One tends to forget to look after oneself.

    Be prepared that your Dad may not want to accept help from support groups. I wouldn't have, had there been any. I made a conscious effort not to learn about what was to come at each stage. Fear mostly, but I also did not want to make judgements based on other people's experiences - I wanted to take each new thing as it came, and deal with it. Frankly the medical profession was not overly helpful in preparing me for anything; most of the time I felt that I needed to help them understand the disease and its ramifications. I diagnosed my wife's condition 4 years before they did.

    The fact that you have found a good home is fundamental and you can build on that. Depending on the patient's condition, some people do take them out on trips. If it causes problems when they return, then for everyone, it may be best not to do so. If the home has a garden then that is a good substitute in all but wintertime. A trip into the garden means you are all still within her new 'home', and that will help her adjust more quickly. There are always interesting things going on in a garden, flora and fauna. If there is a place indoors where you can walk and talk, use that too.

    When you are with her, talk also to other residents as you pass or meet them [also to their family]. This helps them, and will help her feel everything is normal, to a degree.

    When the speech goes it is difficult, but I have found a host of other ways to communicate with my wife. As her sight is also compromised, I find that touch is critical - for her to be able to hold my arm, nose, ear - the times she has nearly throttled me! I put my arm around her and have followed her example of patting. When she pats my arm or back it means that she recognises me in some way. Probably not as her husband, but as someone she trusts, which is the best I can now expect. When I pat her back, she seems to relax a bit.

    I also communicate through food. Jan loves Fanta, so I am pretty much keeping that company going by buying in bulk. I add cranberry juice to it as that helps the bladder. She gets dehydrated and I always tell her the bar is open and I have brought her a drink. She understands that.

    She also loves Mr Kipling Country Slices and Lemon Slices, so I buy them in quantity as well. She really likes these and we have good communication as I feed her with them each day. Speech it is not, effective communication it is!

    So you need to establish a new mode of communication that is appropriate in your case. Distraction and cheerfulness is a great thing.

    At present I would worry more about your Dad. Distraction may be good for him too. Such distraction could go two ways: distraction that involves his wife in some way; distraction that takes him from her. I found that the most effective thing was to immerse myself in a project which was to bring together photos of our life together. In that way I could relive the good times for a while, and the results were then available for the rest of the family, who learnt a few things in the process. At a later stage one can put that down and draw a line under that life.

    If that is not a good idea, then encourage him to spend some time on something that he may have wanted to do before, but never had the time. He will find he has empty time on his hands now he is not actively involved in caring, and that hangs heavily. I bought heaps of DVDs and watched them endlessly to distract my mind. Worked for me.

    Finally, you didn't say how far away is the home. If it is possible, your Dad may benefit from visiting very regularly in the first instance, and then wean himself off gradually, as your Mom settles in. If she is tearful and sometimes angry, it is because she is confused, not because she means it.

    I'm no expert, by the way. I've invented everything as I have gone along; dropped things that didn't work; kept things that did; adjusted daily, sometimes hourly. What has worked for me may not for you or your Dad. 14 years into this process I am still having to learn as my wife's condition changes. I've probably learned as much about myself as I have about the rest of the mess!

    Good luck - do use the forum whenever you need to, or send private messages.
     
  10. Lynn

    Lynn Registered User

    Mar 1, 2004
    8
    Hi again
    Thanks for your advice Bruce It has helped a great deal. I went along to see mom on Sunday and she seemed a little more "settled".
    My Dad is going through some of the emotions you so rightly describe and understand, and Sunday pm I had a call from him in a very emotinal state threatening to "top himself" if he doesn't bring mom back home again. He said he didn't care what anyone else felt but that he can't live with the pain any more. He was more rational yesterday again reaslising this wouldn't be the best thing for mom (or anyone else) but I know that call will come again...... perhaps tonight.
    He is unable to visit mom regularly as she is 30 miles away, but he said that if she was very local he wouldn't be able to face it. He has a daily visit to a local social club which he enjoys but I think every morning and evening is overwhelmed by the pain and doesn't have any distraction. My sisters and I all have famuilies and careers and live more than 15 miles from him so know that isn't ideal as we would love to be able to drop by regularly, but can't. I have suggested getting him a computer so he can share his thought with others like you as I know I have found it immensely helpful and I also noted the book that you had mentioned which I will get for him.
    Is there anything else I can do...............I am really scared he is going to give up under the emotional pressure but know he wouldn't cope if he brought mom home again

    Kind Regards
    Lynn
     
  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Lynn
    further to my message, certainly do take the 'topping' seriously. The amount of grief is immense, particularly when the patient leaves home for the last time. If he can manage/bear to visit then that will help him because the situation then becomes more normal and a routine is established. He will accept, to a degree, that the home is best for her.

    Do try the computer, or 'story of your lives together' options to distract him. It will be good for you too as you will learn things you never knew about their time together, and you can pass it on down the generations.

    Love isn't something that ends, though its nature changes with the conditions and over time. Their love will live on as long as anyone knows about their lives.
     
  12. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Lynn
    I can understand how your dad feels,I have looked after my wife for 7 years now since she was diagnosed as AD.
    I would not accept outside help,she is my wife and we love each other deeply but I can see her slipping away from me.
    I do have some help from crossroads now and we are having a cleaner come on a regular basis and at last I am getting a little assistance from the 2 sons and the Daughter -in Law.
    I can understand Dad's feelings,I have been to the point of suicide,I have telephoned the Sons (how unfair)and threatened to top myself,obviously I didn't.
    I have experienced all the feelings that Bruce described and stood in the garden and cursed God for doing this to us.
    I am aware that the next move will be into care and I cannot imagine how I will cope with that.
    Tell Dad we are thinking about him and I hope he can find the health and strength to carry on.

    Bless you for your concern
    Norman
     
  13. janey

    janey Registered User

    Jun 29, 2004
    86
    Dear Lynn
    As daughters. the feelings of helplessness are devastating when we see both our parents suffering so badly. I too have found the contributions from Bruce and Norman very helpful, as my family is facing a similar situation to yours. Mum's behaviour is becoming unmanageable and extremely distressing for all concerned, Dad is past the end of his tether, and the inevitable but heartbreaking decision for Mum to go into care is upon us. The trouble is that so far we haven't been able to find a 'nice' home that will also be able to cope with her behaviour. Anyway, I don't know if it is any help, but my Dad wouldn't accept help from any outside agencies except a sitter once a fortnight. Apart from me, the person he HAS talked to, though, is his sister. Unfortunately she lives a few hours away, but he talks to her on the phone and she and her husband visit a couple of times a year. I wonder if your Dad has any siblings who care enough to help him?
    All the best
    Jane
     
  14. Jude

    Jude Registered User

    Dear All,

    Oh dear........ My Pain of the Day seems quite minor in comparison with other posts here - still it is sad and I don't have anyone to tell apart from you guys. It's been a real Friday 13th today, with huge highs and lows and I seem to be swinging from one point to another really. I posted the 'high' bit on the other thread but this is the low bit.

    I had a phone call this morning from my staff at Flamboyant to say that my/our cat, Jeffrey has died. Apparently he ate some rat poison and had been extremely ill for 24 hours. There has been a vermin plague recently in the village and people have been placing ratsak around their houses, so he must have picked it up on his rounds. My friend called the Vet and she also nursed him, but there was nothing that they could do. They gave him a FULL Bali ceremonial burial this afternoon, which says a whole lot about Jeffrey's character and my staff too.

    Cats are sacred in Bali and he was a very special one. I found him in a rubbish tip when he was about 4 weeks old. - he was totally emaciated and unable to even stand up. I fed him for weeks with an eye dropper filled with milk until he was able to eat solid food. From then on, he never looked back! This was one of the biggest Bali cats you'd ever see. Stuffed full of milk, eggs and chicken, he was a sleek and very handsome chap.

    On Wednesday night last, Jeffrey apparently attended my friend's 50th Birthday party as guest of honour - and scoffed down tons of food and was petted by all the guests. He would have been in his element!

    All of the staff are distraught at present, as am I. Balinese people aren't actually noted for their fondness for animals, but they were in tears when they rang this morning.

    We've lost a really good friend for the moment. My staff have told me today that Jeffrey will be reincarnated really fast in human form, since he was such an exceptional animal. I'll go with that for now.

    Jude
     
  15. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    It is horrible enough when a cat reached the end of its span naturally, worse when that happens and one can't be around.

    It is really awful when something like this happens and you can't be there.

    Cats are small creatures, but they cast their personalities wide.

    I know you have a slow data line but if you get the chance, and you have time on your PC, have a look at a short cat movie I've just uploaded to my web site. Actually I think it is an advert from Oz - so you may have seen it - but it always gives me a chuckle:

    http://www.bovill.net/BungeeJu.mpg

    Slightly shorter and a sound track is a Sinatra spoof made about plane hi-jacking. Typical U.S. style, lifting themselves after an awful disaster

    http://www.bovill.net/StrangerOntheFlight.mp3

    A Beach Boys spoof is probably not appropriate to put up there, but it is also good and funny.

    Wow, all this stuff I collected over the years!

    Try not to worry too much about Jeffrey, he's at peace now.
     
  16. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Jude
    I think I told you all that our cat had to be put down ,be 3 weeks ago now
    She was a stray that moved in with us,a character cat with her own beguiling ways.
    We think she was about 10 years old,she had an enlarged heart,failing kidneys and went blind,we had no choice but to put her sleep.
    I hope she is with Jeffrey now,we can believe that if we want too can't we Jude?
    Love
    Norman
     
  17. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Cary's report

    I just came upon an end of year report I wrote about our Abyssinian who died a couple of years ago. I wrote it for the Aby Cat Association Newsletter. Sums up most cats, I guess:

    End of Year Report for Caradoc

    English:
    Continues to make progress, although he still has trouble understanding the meaning of simple words, such as "No!", "Don't!" and "STOP IT!" , while he has an excellent grasp of other words - "food", "fish", etc.

    History:
    His grasp of history is tenuous: he can't remember simple dates, such as "9th November - told him not to jump on table", "10th November - told him not to jump on table, etc.

    Geography:
    While his spatial awareness is somewhat lacking - he can't understand "Come here", he does seem to have a knack in this subject as he travels far and wide and always finds his way back.

    Mathematics:
    I have the uneasy feeling that he counts in his own way, using us as a counter: "Oh you're not bringing that mouse in" [Cary thinks ... that's ONE] "Cary, not ANOTHER mouse!" [Cary: that's TWO] "Cary, you haven't eaten that mouse have you???" [Cary: surely that's subtraction? and what else would I do with the mouse?]

    Sport/Dance:
    Probably his best subject. Racing from a standing start, chasing mice and voles, balletic leaps to collide with Nicky the Russian Blue - all of these are excellent.

    Computer Studies:
    Has not quite grasped the reason for the keyboard yet - he seems to believe it is a form of orthopaedic bed.

    Overall:
    Cary is a character, and although he has a most disruptive influence on the home, he has a natural winning way that assures him of his place at the top of the class, and we wouldn't have him any other way.
     

    Attached Files:

  18. Jude

    Jude Registered User

    Dear Guys,

    Thanks for the jokes and sympathy. Jeffrey will be up there bossing everyone around in cat heaven, no worries about that!

    Worst thing is - I didn't even want the bloody kitten when I found it because I figured he would just die from malnutrition and being out in the wet weather for at least a week and I knew I'd be really sad if it died.. I would have bashed him on the head if I'd been game enough on Day 1. Anyway, he survived all that and then grew up to be such a wonderful cat. He treated eveyone and all the guests at Flamboyant as his personal property and was great on night security duty too. What a bloody awful way to die - rat poison. Still, I suppose he had three wonderful years of life. Much better than your average Bali cat.

    It will be pretty dismal going home without him there for a while at least. I'm going to miss him very, very much.

    Jude
     
  19. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    My wife has always loved flowers and would spend ages arranging them.
    I have always believed in buying flowers for the living,not when it is too late for them to enjoy them.
    On Saturday I bought flowers as usual but this time the end result was different and very sad,it really depressed me.
    I found the vases,I put in the water,I ended up arranging the flowers,it seems another stage has passed,she had forgotten how to arrange her flowers.
    Another bummer as Bruce would say

    Norman
     
  20. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Norman

    I take in flowers for Jan from time to time, although she can't see them, can't [as far as I know] smell their scent.

    But when I say to her "I've brought you some lovely flowers" I always get some response - a smile, an "oh". Somewhere inside she seems to appreciate it.

    That makes it worth while, and the other residents can enjoy the things Jan cannot.

    Like your wife, Jan was a fantastic flower arranger.

    We can do what we can do, nothing more.
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.