The Day after Tomorrow

Discussion in 'ARCHIVE FORUM: Support discussions' started by Brucie, Jul 30, 2004.

  1. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    You'd think that after caring for your wife for the past 14 years that you would be immune to adverse changes.

    Not so.

    I made my daily visit to Jan at her care home today.

    Twenty minutes into the visit [no, I'm not thick, it just takes a lot of concentration making these visits] I realised that all Jan had done was pull herself on her hands and knees, then almost immediately fall either to left or right, in the 'soft' room where I spend most of my visits with her.

    I realised that the most verbal contact she had provided sounded like "gadda gadda gadda".

    I knew she couldn't see me.

    I couldn't elicit any reply to the words I said to her.

    I recalled that this has been the case for the past four days or so - perhaps she has gone down one more step.

    It stretches your spirit a lot.

    I was a bit later than usual visiting Jan today and 45 minutes into my visit the 1-to-1 carer came to ask if he could move Jan to her chair so she could be taken to the dining room for her food.

    I said yes, and also that I would go because she didn't seem to be gaining anything from my being there [and it was very upsetting for me, though that is such a minor thing in comparison]

    As I left, Jan was being fed her evening meal. I touched her head and said "I'm going shopping now. See you tomorrow".

    Sightlessly she said "Oh Golly, no!" - the first recognisable thing she had said all during the visit.

    One wonders just how many steps downward there can be.

    We all have bad days!
     
  2. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Braveheart

    Bruce I'm so sorry. I have no concept of how this must feel for you, but I know enough to say it must be absolute agony.
    I thought I was having a bad time because my mum had been asking me all night where I am (she doesn't recognise me as an adult and thinks something has happened to her child) but what you are going through is a nightmare. I am so sorry.
    I wish there was something I could say or do to help you.
    I still think you are a Braveheart.
     
  3. susie

    susie Registered User

    Nov 30, 2003
    82
    shropshire
    heartbreak

    Brucie
    I so look to you for those sensible reasoned ways to cope that it's a shock for me to find you have bad days too. You have had a much longer journey than many of us but as you tell us all,a day at a time and tomorrow may be a better day. I keep remembering Nacy Reagan saying Ronalds cup was always half full, never half empty and that can seem trite when you have a bad day, but there must always be hope. You've supported a lot of us on this forum, so we're all here for you. I know how it hurts as this afternoon I felt a physical pang I could only liken to heartache when my husband-ex teacher and financial planner said to our 9 year old granddaughter that some people say cats are from tigers is it true? Her reply was Yes Grandad, they're from the feline family!! Needlesss to say he said what does feline mean and so it went on. What was a terrible thing for me gave them a lovely chance to chat and of course children take it all in their stride. At least you had a reaction when you went so hang on to that Brucie,there may be more.
     
  4. Chris

    Chris Registered User

    May 20, 2003
    243
    Hello Bruce

    I just erased a long message I wrote to you - instead - hope tomorrow is brighter for you.

    My Mum has different symptoms to Jan - but probably is at much the same stage of dementia as Jan. I wish I could find words to comfort as you have done for others in the past. Hope knowing we are all thinking of you will help a little.

    Chris
     
  5. Kriss

    Kriss Registered User

    May 20, 2004
    513
    Shropshire
    Hi Bruce

    I really hope the sun shines for you tomorrow.

    All the best
    Kriss
     
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Thanks folks,

    Everyone gets their bad days! It is especially hard to see someone so young, so badly affected. It is something one never gets used to.
    :mad:
     
  7. Bugsy

    Bugsy Registered User

    Jun 1, 2004
    20
    Rochester, Kent
    The long journey

    Dear Brucie

    I am sorry you are feeling so down when you have been part of my strength in starting this long journey.

    My mum has been very brave too these past few days when she has visited Dad who has been very loving towards her since he went into respite care. She, like you is very hurt and angry too about losing her Alf which after 56 years on Monday is going to be increasingly hard to get through.

    He is showing signs of being much calmer and we don't see him being so anxious about leaving. Either he is waiting for the first opportune moment to escape and is fooling us or he is too busy collecting up all the other peoples coats from their wardrobe and putting them in his own to think about the way out!

    Take heart from all the previous emails on this 'thread' because you are supporting so many of us and today my thoughts are with you especially and hope this helps.
     
  8. Chesca

    Chesca Guest

    Bruce

    For your beloved wife you have one-to-one- carer; a 'soft room'? Do tell. How does this work?

    Chesca
     
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello Chesca

    My wife Jan is an early onset Alzheimer's/vascular sufferer, and three years ago she left home for the last time. First she went to the hospital on assessment and when there, she fell and fractured her pelvis. After that she was never able to walk unaided, or return home, and she remained at the hospital for nearly five months.

    To ensure her safety she was given 1-to-1 care, and her room was converted from a normal bedroom to one that had matresses on the floor and along the walls, so she could do no further harm by falling again. [1-to-1 care: a member of staff dedicated to Jan and at all times within 3 feet of her]

    Then she was placed permanently in a private care home on the same site as the hospital.

    The private home is entirely funded by the NHS and is an exellent one.

    However, the hospital just dropped her in there without telling the manager and staff of her special needs. She had been using her padded bedroom at the hospital, but the home was not told and they assigned her to a shared room with a normal bed. The home was not told of her 1-to-1 care.

    I arrived 1 hour after Jan was admitted to the home and immediately informed them of these things. Had they known of her condition, they might not have taken her, but they had to keep her as the hospital had quickly filled her bed with another patient.

    Within another hour the home had re-arranged things to ensure Jan's best interests, despite having 23 other residents, all of whom are challenging. The home is the 'last resort' place where all the most care-intensive people go.

    Actually, now I see it as a good thing that the hospital was no longer able to take her, as the home is clearly a better and safer place for Jan.

    The home needed to get additional funding for the 1-to-1 care, but agreed they would cover the costs until they had it.

    Since then we managed to get shared funding for the 1-to-1 care and recently have fought to extend the period when it is available. Now it is from 6am until 10pm each day. We are still trying to extend that to 24 hours as Jan is very vulnerable.

    Originally when Jan moved to the home, they immediately moved her to a single room, and searched high and low for mattresses to pad it safely. The home manager even went home and brought one of hers, so Jan would be safe.

    That is how the room stayed until the beginning of this year. We had been trying to locate a bed that she could use where she would be safe, but the care standards people were most unhelpful in that they said no to everything we suggested [including building a special safety 'pen' for her], yet could offer no advice as to what they would accept.

    Eventually we found a German-made bed and that is what Jan now uses, most successfully. We could then convert her room to being a normal bedroom where she is safe.

    However, since Jan can't walk and can only crawl, the padded room had been an excellent place for her to exercise. So the home converted a room just off one of the main lounges into a soft room - floor and walls again padded with mattresses. That is where we now crawl together. No other resident at the home uses the room - or needs to use the room.

    Besides these things, we also found an excellent chair for her and the combination of these things makes Jan's life that much more comfortable, and it makes me as happy as it is possible to be with her care.
     
  10. Jude

    Jude Registered User

    Dear Bruce,

    I'm so terribly sad to hear that you're having such an awful time.

    I guess we all hope that the normal daily routine will prevail, but it's never guaranteed and every step down hits harder. It always takes us by surprise and dealing with the shock is almost too much to bear. Just when you get used to one drama, then something else happens to shatter your equilibrium.

    Everyone is thinking of you here. I hope that will help a bit. Just keep posting and we will all give you 100% support. You know that.

    Send me a private message if you'd like my phone number. You can always ring me any time if you feel lonely and in despair. I'm always here for you.

    Jude xxx
     
  11. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Bruce
    sorry that you are having a rough time,I hpe the sun will shine for you soon.
    I am going through a rough one at the moment,nothing seems to be going right,I can't do anything right.
    Peg's memory is zero and it is so wearing, repeating over and over again,it's me,we will come through it.
    When one is down it seems everything crowds in and you begin to wonder what it's all about.
    Thinking of you Bruce, day to day, tomorrow must be better
    all best wishes
    Norman
     
  12. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Spartacus

    Thanks everyone for your kind messages.

    Like everyone else, I find this forum a good place to dump out when things go just that little too far. That's the power of Talking Point - we're all in the same leaky boat.
     
  13. Chesca

    Chesca Guest

    Dear Bruce

    What comes across is the great level of humanity and compassion demonstrated by the care home manager. This is something that in my experience is lacking, both at the hospital and the care home which causes me so much grief. Residents at Mum's care home are going down like nine pins, there is not a day goes by when someone is not bruised, in plaster or otherwise in the wars. They fall out of their beds because there are no guard rails and nobody advises carers that they need to invest in such safety measures.

    Those residents who can no longer walk are left to crawl along the corridors and the main room. As mum deteriorates I can only live in dread that in order to obtain that which she deserves to ensure her comfort I will have a battle royal every step of the way. I won't accept that second best will do where it is in my power to ensure the very very best and don't understand why I have to battle all the time, yadda, yadda, yadda..........

    I draw inspiration from your postings, your great love for Jan and just thank you for being there.

    Chesca
     
  14. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    The Land that Time Forgot

    Hi Chesca,

    The home manager is fully supported by her line management, and she in turn fully supports her staff - and of course uppermost in her mind, her residents.

    She - and her immediate manager - is as frustrated by inept administrators in the health and social services [and the care standards people] as we are and on several occasions I have arrived to find her crying in frustration, and saying she can earn better money doing an office job somewhere. I simply put my arm around her shoulders and tell her that if she leaves I'll have to kill her. That generally does the trick.

    A resident falling or having a graze or bruise is not unheard of - accidents will happen - but they are treated as important incidents when they happen, and steps are taken to ensure such opportunities for harm are minimised for the future.

    I'm disturbed to hear that people are left to crawl, are they unsupervised? How many residents are there, and what is the staff ratio [care and nursing], day and night? ...don't worry if you don't know!

    I guess I should count our blessings! Should definitely mark BUPA down then. Mark Shaw Homes up up up!
     
  15. HELEN

    HELEN Registered User

    Jul 16, 2004
    36
    wales
    Hi Bruce,

    wish i had some wise words but i don't , just wanted you to know i'm thinking of you & sending you a cyber hug.

    take care

    Helen
     
  16. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Brucie, so sorry to hear Jan is not too good. You must take heart in the fact that you seem to have found a wonderful home for her, oh that they were all so dedicated. Jan will not realize the changes, it is you that feels it, be strong, be brave, you are being a fantastic husband, many would have scarpered long ago!
    Be kind to yourself too, because you really cannot do any more than you are. With this illness all we can do is love them and even that hurts when they don't know. Try to look to tomorrow, things change and every step on this sad path teaches us some thing in some way. Perhaps not at that moment, but later to reflect on or use to help others. The road to enlightenment has many pebbles.
    Best wishes, She. XX
     
  17. Chris

    Chris Registered User

    May 20, 2003
    243
    Shaw Homes & care homes

    Hi Bruce

    On a positive note - is it good then that Shaw Homes have put in a planning application to build a nursing home (with dementia unit ) and day care unit near us??? The Planning Application mentioned a therapy room and activites room . Never seen that before - well done Shaw! Hope it becomes reality.

    I tried hard to get Mum in a place that I could see had really good dementia care - all the residnets looked settled (not spaced out on drugs but content) - loads of good things were happening there - special gardens being developed, big fry up for a lazy, long breakfast some mornings (Oh! I could fancy a bacon sarnie right now!) , bathrooms kitted out for a sensory experience & long soak in bath etc etc They looked at me pityingly when I described Mum - they said when they get a vacancy the person with greatest need gets it - so its people who couldnt get a place elsewhere - so we had to settle for second best. Why cant the special dementia care they were offering be on offer at every home that gets itself a 'D' registration ? (ie registered to cater espcially for people who have dementia) - THERE IS NO SUCH THING AS EMI now !!!! Wouldnt think that would you ? ! all the professionlas I know , outside of the CSCI (Commission for Social Care Inspection - I think - this has replaced the NCSC National Care Standards Commission) continue to talk about EMI Residential and EMI Nursing.

    Care homes are required to seek comments and views of all residents and their relatives now - so we all need to ask about how to do that. Also every home has a CSCI Inspector who will stay with that home over the years - to do the twice yearly Inspcetions etc - they welcome letters or phone calls from friends & relatives - you can do this annonymously & comments will still be valued.

    I thought BUPA were supposed to have good dementia care on offer ? Why isnt reality matchng up to their promises? Why dont we have some sort of Quality Control in the care home market ? I think eventually the Care Standards will come to our rescue but it is taking far too long.

    Mabye it would help if we coudl identify some good 'models' - ther emust be some excellent home around (? the one Iris Murdoch llived in??) - cant we publicise what life is like there so that the expectations of everyone is raised - & we know specifically what we are after eg activity/craft rooms, music rooms , therapy rooms - not just BEDROOMS , one lounge and one dining rom - doing craft on a dining table ends up with the materials being eaten - not so strange - what are people doing 3 times a day sat at that taable ? eating !!!!! Getting hte enviroment right is half way to enabling the person to start doing things rather than behaving passively. I'm working as a therapist - it is amazing the differene in people when th eright cues are appropriately given. It has a knock on effect and then the talking starts - beign occupied physically seems to break down the communication barrier someitnes & people are freed up .

    Time for bed !!!
     
  18. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello Chris

    Yes, I think it is good news that Shaw may have a place near you. whether it would be available to you is another matter, but I have been very impressed by their professional approach to dementia.

    I do have to say however that, were the funding for Jan not on a Continuing Care basis, I could not afford to have her there. Not that their costs are particularly higher than some other [non-EMI] places I once viewed - and those places were heavily variable in quality of everything.

    The one where Jan is happens to be totally funded by the local NHS PCT, so one needs to find placement via them.

    Jan regularly has big breakfast fry-ups, and at least one fully cooked meal each day - cooked from scratch using fresh ingredients in their own kitchen. The other meal is generally sandwiches or something with toast. The main meal is three courses and I would be happy to pay for it at a decent restaurant nearby. There are two excellent chefs at the home.

    There are activities, and days out [for those who can do that], plus the soft room, some portable lighting systems, a huge CD collection, regular 'horse racing', cookery, painting, etc.

    Far as I can tell, BUPA is there as a profit-making organisation, and is great at pandering to people wanting unnecessary minor ops, but useless for anything major, when it throws up its hands and pushes people to the NHS. [this is my interpretation of my Mum's long-term payment to BUPA and the eventual trashing of her back in an unnecessary operation. Admittedly she was the main driver!]

    Dementia care is not primarily about making money!

    I'd be happy to describe the care home where Jan is as a first model.
     
  19. karen_white

    karen_white Registered User

    Apr 21, 2004
    72
    Berkshire
    Sorry to hear things aren't great and I hope your next visit to Jan is better.
    We have had a few weeks of terrible visits with dad as he refuses to take his meds and keeps withdrawing into himself.
    But, mum and I made an effort to take his dogs up to see him on Saturday, including my own westie and walked over to the park with him for a picnic. He nicked my sandwich (after having a hearty lunch at the home) and proceeded to chomp through as much as he could now he won't have his false teeth in. Was lovely to see him enthused by something / anything, which is rare these days.

    Was such a shame that the wasps had to spoil it all by trying to feast themselves on his sandwich as well. Dad wasn't bothered, but it would have been merry hell if he had been stung. Can you imagine!

    Even though we had a lovely afternoon, the best with Dad in ages.
    Chin up Bruce. You're so strong and manage so well to keep our spirits up when we're love.

    You're in my thoughts at the moment.
    Karen
     

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