My Heart is breaking and I don't know what to do.

Discussion in 'ARCHIVE FORUM: Support discussions' started by SallyB, May 9, 2006.

  1. SallyB

    SallyB Registered User

    May 7, 2005
    60
    Hi, An update on Dad, He has been transferred to a Psychiatric assessment unit. If anyone has ever been to one of these wards they are so sad. I look at Dad and think 'you shouldn't be here' His Doctor has said that they will keep him there until I find a care home.

    My dilema now is that when I look at him now I wonder if he would be ok to go home instead. I cry everytime I leave him. Yesterday he was asking to go home. Started getting cross with me. The day before he wanted to go to the USA because his friend in the war told him how nice it was! When I said it would take me some time to locate his friend he said it didn't matter we could just go!

    So I know that he is having small lucid moments but I feel like my heart is breaking everytime I leave him. Should I make the step now and put him in a care home or should I try and bring him home with more home care? I have looked into paying privately for a night carer so he isn't on his own at night but he will still be on his own for times during the day.

    How do I decide what is best? I know that is the million dollar question and we would all be richer if we knew the answer!

    Sally
     
  2. dmc

    dmc Registered User

    Mar 13, 2006
    1,157
    hi sallyB

    my family was in the same situation as you a few weeks back with mum, your right the units are so depressing, for us the only way at the moment is to keep mum home as long as possible, it is hard work, and weve got two carers comming in three times a day instead of one (which mum hates) but we couldnt bear to send her anywhere as (at the moment) obviously as time goes on and her health declines we might have to think again :(
    and i am lucky that my dad is there as her main carer, and she's not on her own,
    but only from my mums experience, i find she seems a lot better at home, she's walking better, going to the bathroom on her own, she's even started putting on her makeup! and as long as she can get out for a few hours every day, she seems quite happy.
    she is quite "confused" if that is the right word, she thinks were going to the airport on holiday every time we get in the car, and at the moment she's having problems recognizing my dad,

    reading other threads about care homes most peoples experience with them are positive perhaps you ought to check a few out yourself first and see if your dad would settle in ok, before you make the choice.
    i dont envy your descision sorry i cant be more help,
    im sure you'll get other replies from people who have just gone through your dillema.
    good luck
    xx
     
  3. SallyB

    SallyB Registered User

    May 7, 2005
    60
    Hi Donna,

    I have looked at 11 up to now and need to keep looking!

    Thanks for your comments

    Sally
     
  4. Michael E

    Michael E Registered User

    Apr 14, 2005
    619
    Male
    Ronda Spain
    Sally hi,

    Monique has got to the stage where I really cannot leave her alone - at all. The good thing is she sleeps deeply in the mornings so I 'escape' and see a friend for an hour or so and I have now 2 afternoons of 4 hours off as a carer type person comes in. All the rest of the time I have to be in the house.... It is fairly demanding and I am married to her!

    For Monique it is the boredom and loneliness that are the 'real' things that get to her. She says she has no friends and nothing to do... To some extent that is true.

    I have a feeling that at some point it is better for people with this problem to be with others.. The loneliness will go away. The boredom may be less intense if there are others around to 'exchange views'.

    The problem for Monique being trapped with only me for company is that there is only me....

    Not sure if all that helps you? I think I am saying that there possibly comes a time when the company of others - several/many others may be better than the company of one person who you only recognise occaisionaly...

    Horrid decision to have to make -

    love

    Michael
     
  5. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hi Sally

    It is a real dilemna for you.

    In my Mum's case we had no choice, following Dad's death.

    She was not safe on her own and the thought of her becoming anxious and frightened alone in the house was too scary fo us. Mum was able to walk and dress, but wandered off at all hours, getting hopelessly lost and had no idea how to cook or make a cup of tea for herself, so we balanced the pros and cons and decided she had to be safe and cared for 24/7.

    We could not do that for financial and practical reasons, we still have the odd guilt complex about it, but overall, for her and us it is the best we can do. We visited her home and it just felt right, perhaps we were just lucky.

    Mum's EMI home is secure and she is calm, relaxed and smiley for the most part., the staff are friendly and approachable and support us through the hard times too. We can visit as often as we like and up until recently, when her health deteriorated could take her out, so we have felt a part of her life as we were before.

    Whatever decision you make, it will be in your Dad's best interests, so go with your instincts.

    Best wishes
    Kathleen
     
  6. DickG

    DickG Registered User

    Feb 26, 2006
    558
    Stow-on-the-Wold
    Hi Michael

    I am sure that you are right and that our loved ones need the company of others, they just don't want it!

    Pre-AD Mary was a carer in a home that specialised in EMI and she frequently said that many of the residents were better off in the EMI unit because the staff were more able to provide stimulus since they only had to cope for a shift and not continuously. Although the work was very demanding she always returned home in a happy frame of mind because she had made a difference and left someone feeling happy.

    Fortunately Mary must remember her positive experiences as she insists that if I find caring too much of a burden she will go into a home. I am going on a respite week to Thailand on Sunday and although she needs continual reassurance as to who is going to look after her etc. she has said on more than one occasion that the break will do me good. I must be the luckiest guy alive.

    I know that I sound smug but give it a day or two and I will be back whinging.

    Dick
     
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Sally

    it is always going to be a difficult call to make.

    I found that, if I was honest with myself, I knew when I had to let go and allow Jan to be placed in the home. I knew that if there was any practicality in my taking her home with me that i would do that, but I knew that was a pipe dream.

    Before that time, when others might have suggested the home [had they not known I'd have snapped their heads off verbally], I was in doubt as to the best course, so kept her close to me.

    Had Jan not been living with me at the time, there is no way she could have stayed out of a home for maybe the previous year or two. [or, once again being honest with myself about her condition - difficult even at this remove - probably longer than that].

    Good luck in deciding what you believe to be best.
     
  8. tinker

    tinker Registered User

    May 4, 2006
    8
    Hi Sally,

    Unfortunately there are no answers, but perhaps this may help?

    Before my Father became too ill, he used to say that everything is like a giant jigsaw puzzle, you know you have all the pieces and sometimes you know you have the wrong piece, but you keep trying to force it into the gap anyway... he said that words and meaning were like that for him.

    He was often really angry because of the frustration that he couldn't get across what he really meant.

    When he was first away from home, he constantly asked 'when am I going home'? 'shall I get my bag' 'where are you going' 'why can't I come' It was incredibly difficult and I know what you mean about your heart breaking...

    It may seem odd, but I discovered that the constant need for home and returning home, wasn't what it seemed. I used to feel so bad and one day I pretended to leave and then watched him without his seeing me and he was talking with the nurses, calm and quite relaxed. That in itself was a relief...

    It appeared that by seeing me, he thought of 'home' otherwise he didn't. It is all so strange and because no-one can answer you, no one can tell you what will happen, what to expect..you constantly question if its 'the right thing'

    My only advice would be to listen to your heart, you know deep down what is best, what you can and can't cope with.. Not easy, but you need to stay fit and well to support your loved one, to make sure that they have the best that is possible and to act as their voice when sadly they no longer have one...

    I do hope that you are OK and that this helps in some small way
     
  9. Dave W

    Dave W Registered User

    Jul 3, 2005
    268
    Bucks
    Good luck, Sally

    Tinker, thanks for your posting. You actually typed what I said to a friend at lunchtime, trying to describe what things are like with my Mum at the moment. Whenever we visit, we get 'when am I going home?', 'you haven't sold the house, have you cos I'm going to go back there' and endless variations on the same theme. But the home staff - who've been excellent so far - swear blind she's happy and settled the vast majority of the time.

    I couldn't help but notice that one of the staff came and sat in the same little lounge area as us last time we visited (she said later that she wanted to so she could intervene for our sake if Mum was being difficult to deal with), and Mum brought her into the conversation herself. Soon we were into what a lovely evening they'd had when the accordion player came the other night, and how the patio was coming along now the plants are starting to bloom, and helpingo make pies ...

    As Tinker said, I think in many ways I remind her of 'home' (though I hadn't lived there for 20 years, she's convinced a lot of the time that we live together) and that sets off the topic. I represent some kind of token of aspects of her past.

    It's a double-edged sword: you want to visit but you don't want a visit that is painful. The Guilt Monster everyone on TP talks about is already sitting on your shoulder, anthen you have a visit that makes you wonder why you're bothering and what it is you think you're achieving. It sounds awful, but it's human and natural. If you didn't care, you wouldn't be upset, would you? Try not to fall into the trap of feeling bad about feeling bad.

    I actually questioned the manageress in the initial review to the effect of 'Is us visiting actually not helping?', but she was insistent Mum's loves the visits, speaks very fondly about us to the other residents and staff and that it was a good thing to visit. She described my situation as being her 'outlet' for the frustrations of being where she is (as she can't, sadly, even begin to accept why). Our visit is how she gets it off her chest. Not a nice experience for us at the time, until you see in the bigger picture, when you realise it is serving a purpose and has a benefit.

    It's easy to look for more direct benefits to yourself, but I think you have to accept that the real personal benefit is knowing that they are safe and being looked after: if they we not where they are, how much constant cover could someone give to ensure they weren't vulnerable? Ideally, she wouldn't be there, but life isn't ideal. If I had better options, I'take them, but they're not on offer. So I've chosen as best I can for her: visiting lets me see that what she needs is in place for her, even if 'needs' and 'wants' might not always coincide.

    I know that's not hugely comforting so far, but the other tip I can offer is to think of plenty of conversational distractions before you arrive. Mum reads the paper every day, so I talk about things that are happening in the world (she hates Blair, which is a conversational godsend lately). It's hard work, but it helps - distract my Mum long enough and she'll have quite a chuckle about things and be quite witty and jolly. I live in vain hope that it may be helping her try to learn that it's possible to reasonably contented and enjoy moments as her life as it is now - who nows? I'm not a qualified care worker with dementia training, I'm just her son - but where they have been a string of visits with good moments, the next one seems to come more easily.

    The other thing to remember is that small events can cause what might seem like excessive anguish or upset - we had one terrible visit where it turned out she'd exchanged a couple of sharp sentences with another resident mid-afternoon over some tiny misunderstanding and had been in a foul mood and hating everything and everyone all afternoon as a consequence. Not our fault at all, and - as she didn't mention it - how where we to know?

    It's very easy to look at her on her better days and think that 'she doesn't need to be here'. But she had days of hating and not recognising the home she now wants to go back to you; while she was there she was falling asleep with the oven or grill on (with food in), wanding the streets at night, continually locking herself out, phoning the police to report delusional accusations against the neighbours and starting fires in the garden. The home gives more stimulation than she would otherwise get (she'd been a determinedly solitary figure since my father died), constant company, and activity: mentally, she's far more stable than when she was at home or in hospital (although some of this is probably due to medication).

    And if she did go home, she'd fall apart again in no time at all. Granting her her apparent wish would be dangerous, negligent and cruel. Remembering that definitely helps me.

    What's best is what you know is actually going to reliably make sure Dad will have someone there when and if he needs them, for whatever reason, in a stable environment with some stimulating activity. Looking back, what was therefore actually a practical decision (in my case, which home?) felt really hard to handle because I was trying to answer what, where, why, who how and when instead.

    Before you can tackle any of it, you need to get plenty of rest so that you think more clearly. No-one thinks at their best when they're upset. Pamper yourself, have an early night, and try to draw up a list of your options tomorrow that you can look at objectively.

    Take good care, and please keep posting to let us know how you get on.

    And have a big dital hug in the meantime :)

    Dave
     
  10. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,149
    Toronto, Canada
    Sally,
    This may or may not help you, but I was told by several people that it may be better to move someone with AD to a home earlier rather than later, while they still have the capacity to develop friendships.

    It might be easier to make the move now. You said you've looked at 11 homes, what was wrong with them? What were the things you liked? I personally think the staff is THE most important element. You must feel comfortable and also, I think you should try to use a calm & rational eye. Don't think about your father livnig there, look at the activities, the menus, the cleanliness, the general ambiance.


    What is best? Best is your father safe, clean, warm and as happy as he can be in the circumstances.

    Joanne
     
  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I agree, staff then these items. In Jan's case, activities have always been an irrelevance, but even if the residents don't respond, it gives an added opportunity for staff and residents - and staff and staff - and residents and residents - to mix in a different context.

    Food and its quality and variety and presentation is hugely important. My judgement, as a fussy eater myself, is based on - would I be prepared/happy to eat the meal myself. And I always would be, at Jan's home.

    Cleanliness of the place, and of the residents - not so much clothing because meal times can be a bit of a custard pie fight and staff can't always clean everyone up immediately - but clean hair, fingernails, cut nails etc.

    Back to staff. They are so important. Each time I visit, everyone I meet smiles and asks how I am and the key workers give me an update on how Jan has been. They also offer me a mug of tea, which I share with Jan.
     
  12. domb

    domb Registered User

    May 10, 2006
    7
    Glasgow
    Hang in there

    Hi sally

    Not a lot I can add to the excellent/support advice already given. It's probably one of the hardest decisions to make concerning AD. When I hear comments from people who have never had contact with AD, about how they would never contemplate putting parents or loved ones into care, I must admit to biting my tongue.

    From a personal perspective, my mother was cared for by my sister and even with the rest of the family to support her, the burden just became too much. In the end my sister was exhausted and close to a nervous breakdown. The 'tipping' point for her came when she realised that she felt that she was beginning to dread (hate?)waking in the morning and having to see and tend her mother.

    I agree fully with the comments from Dave. When my mother did become settled in the care home, she was quiet happy, as far as she was concerned she was at home and when we came to visit she would offer to make us tea or our dinner (who would have thought that AD could have a positive side?!).

    I think the many visits you have made to different homes probably reflects your own reluctance to make this move - every thing must be perfect - and I know that this seems like cutting a vital umbilical. But it's a decision you should make with no shame or guilt. What is best for your dad AND importantly his carers? If it was any other illness you wouldnt hesitate in deciding where was the best place for your dad, but this damn illness carries its own implied 'guilt trip'. A heartbreaking decision I know, whatever you decide I wish you all the best, hang in there.
     
  13. Áine

    Áine Registered User

    Hi Sally

    When I was looking for nursing home for dad a couple of months ago (god is it only a couple of months it feels like forever!) I was advised to chose a nursing home for me rather than (or as much as) for my dad. I think what they meant was chose somewhere where you'll feel comfortable visiting, and feel easy with the staff if there are problems. [However, as I've got gradually more exhausted and confused about all the practical things to sort for dad, and more and more forgetful about what I'm doing as I get more overloaded, I've wondered if maybe there's another relevant way of interpreting this ;) ]

    best wishes

    Áine
     
  14. stephmclean

    stephmclean Registered User

    May 11, 2006
    2
    York
    I have in my hands two boxes,
    Which God gave me to hold.
    He said, "Put all your sorrows in the black box,
    And all your joys in the gold."

    I heeded His words, and in the two boxes,
    Both my joys and sorrows I stored,
    But though the gold became heavier each day,
    The black was as light as before.

    With curiosity, I opened the black,
    I wanted to find out why,
    And I saw, in the base of the box, a hole,
    Which my sorrows had fallen out by.

    I showed the hole to God, and mused,
    "I wonder where my sorrows could be!"
    He smiled a gentle smile and said,
    "My child, they're all here with me."

    I asked God, why He gave me the boxes,
    Why the gold and the black with the hole?
    "My child, the gold is for you to count your blessings,
    The black is for you to let go."

    We should consider all of our friends a blessing.
    Send this to a friend today just to let them know you
    are thinking of them and that they are a joy in your life.

    A ball is a circle, no beginning, no end.
    It keeps us together like our Circle of Friends.
    But the treasure inside for you to see,
    Is the treasure of friendship you've granted to me.

    Today I pass the friendship ball to you.
    Pass it on to someone who is a friend to you...

    I hope that you're getting a lot of support from those on this site and also from your local services... if not, please contact me - my email should be displayed on my profile... I'll see what I can do for you.

    Kind regards

    Stephanie
     
  15. SallyB

    SallyB Registered User

    May 7, 2005
    60
    Hi Everyone,

    Thank You all for your words of support again. It has been a rough week but I am sure there are many of you that know how that feels!

    The Good news is that for the most part Dad is settled in the ward they have moved him to. Not really sure if that is good though as I know he doesn't like all the noise (anyone that has been on a Psychy assesssment ward will know that they are not the nicest places) He is also upset by the people that have dressings on their heads.

    I have looked at so many homes as I am finding it difficult to see what I like in them. People advise that you should look for good interaction between the staff and residents. Well I haven't seen it! The only time I did see it was in a home that didn't seem to have many residents with dementia. I think that we will end up going for the one we looked at first. If anyone has any experience of Bradgate Park nursing home I would love a pm!

    I just know that I will never be happy about this but I am trying to tell myself that at least I know he is safe. It does take away the 'wondering' , I have spent the last several years wondering what Dad is doing when I knew he was alone.

    I just hope it gets easier as time goes by and hope on hope that he will be looked after and that we won't have to move him.

    Once again Thank You all for taking the time to read my posts and reply.

    Sally
     
  16. Áine

    Áine Registered User

    Hope you find something you feel at least Ok about Sally. One suggestion that occured to me: don't know what web forums there are in Leicester, but there's one in Sheffield called Sheffield Forum - it's a place where local people talk about everything and anything that's happening in the city. Discusses places to eat, schools, incidents people have witnessed, bus services, opening times at the tip etc etc etc. I posted on there for info about nursing homes. Caveat that I've no idea who anyone who replies actually IS (they could be the nh owner!) but gave some interesting info. Maybe there's similar in Leicester?
     

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