Visiting...and coping...

Discussion in 'ARCHIVE FORUM: Support discussions' started by jc141265, Oct 25, 2005.

  1. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Where Dad lives there are about 30 people and Dad is one of only two who get regular visitors.

    I can see the difference you know. I was thinking grimly to myself today that all my damn visiting is going to mean that Dad has a far better chance of surviving longer. He has a spark in him that noone else does and when I don't visit him on my return I can see the damage it has done. Though its not irreparable.

    The hugs and cuddles and kisses really make a difference. One on one attention is a marvellous medicine.

    I saw a man visit his wife today, she is one who cries and moans and is oh so sad always wanting me to hold her hand and talk to her and never wants to let go. He sat there during lunch and was absolutely saddened and depressed by the situation and she got very little out of the visit as did he. I thought to myself 'No wonder he doesn't visit much'. I couldn't blame him.

    I've been thinking, 'Why am I able to get something from this, why do I bring happiness to Dad on my visits. I know if everyone felt like me there'd be visitors everywhere and the place would be lively and loud, and not at all grim like it is....'

    I've been thinking about it and the only thing I can come up with is that this has always been my job and so I've had the practice, thought I'd post my thoughts here in case this can help others have a more meaningful visit with their loved one, more meaningful for them and more meaningful for the dementia sufferer.

    What I mean by 'its always been my job' is that ever since I can remember my Dad suffered from very volatile mood swings. There was no rhyme or reason for them, I could leave one school book on the floor and he would absolutley explode. He never hit me but sheesh he was a very scarey Dad when he was angry, and the fact that you never knew when it was coming was freaky!

    Anyway perhaps I am so good at this because from a very young age I learnt to read moods, I learnt to try and think ahead of all the things that might trigger a bad mood/response and I learnt to just roll with the mood and do damage control if there was nothing I could do to prevent it. I also learnt to recognise that Dad's behaviour was not a reflection of his love for me, it was something he couldn't control, but I could reduce the damage done by it by not taking it to heart and thinking oh so fast of ways to change the direction he was heading in. Distract, play the clown, be adorable anything to disarm him.

    I guess I'm still playing that game now....

    So go into the home and expect it to be difficult, think ahead and think of ways to distract, things to do, contingencies.

    I have a bottle of moisturiser and containers of biscuits, a cd headphone set, if you have a female in a home, maybe nail polish and magazines or pretty things, depending upon the level they are at. It doesn't matter that they may not be interested, its just a distraction to use if necessary, a change of topic, of focus. I can't count the number of times I took a newspaper to Dad, he doesn't read, and knowing that he would not be interested in it, would just use it as a prop, and when the silence was growing or he was obsessed with some hallucination pick it up myself and say 'Oh would you look at that, what is he up to?', Dad wouldn't necessarily take in what I said, but it changed the mood and direction of the room.

    If a tactic fails, just let it go and move onto another.
    Learn from it, try to come up with ways that you might be able to improve a similar situation in the future if it happens again.

    Expect this visit to be all about them, and not about you.

    You can try to tell them about your life, but with Dad, he appears not to understand, care, comprehend, nevertheless I keep him updated just in case he is taking it in somewhere and so that if he is aware he knows that I think he might still be capable.

    If they are willing holding hands, rubbing their back, rubbing their upper arm are always good strategies

    Try not to talk about them to other people, include them in any conversations you might have with other people. This can be tricky.

    I said to the man visiting his wife today "Gayle is saying a lot of words lately I've noticed." then I turned to Gayle and said "When I was holding your hand last night you said good a lot didn't you?"

    Don't argue with your loved one no matter what they say, it will get you and them nowhere. This does not mean you have to agree with them.

    One of the ladies at Dad's home insists there is a downstairs. I don't disagree I just day, 'Oh really I didn't know there was a downstairs, how interesting.' When they say something like "Can you tell me how to get downstairs" it can become a little more tricky, or "Why can't I go home?", I answer these sorts of questions with a "Oh I don't know, I haven't been downstairs before, but you know dinner is just about to be served' or "Can you tell me where I can find....?" Often you can redirect them to the staff as well. With the go home question I try to distract or if worse comes to worse tell them that "They are here because its a safe place to be" Sometimes there is never a good answer though, but life can't always be easy!

    Try to be a comfort and if worse comes to worst give them space and just step back and let it happen. This too in time will pass.

    Pick a good time.

    Find out when your loved one is usually in bed, at meals, when they seem the grumpiest/happiest, when there are other events on at the home and use this knowledge to your advantage. I used to initially only visit Dad at meal times because it was easy to visit with a person who doesn't talk for an hour when they are eating! Now I avoid meal times because I enjoy walking with him or cuddling him, talking to him.

    All I can say to sum up is fighting it just hurts, going with the flow can hurt too but its a lesser hurt and everyone comes out of it less agitated, and when you get good at it all, it can mean you walk out of there feeling like you did some good.

    One last piece of advice, fake it, fake it, fake it until it becomes real! Walk in there smiling and happy no matter how your heart is feeling. I learnt a trick a long time ago you know if you force yourself to smile, even in the most devestating circumstances its amazing the effect it has on your mood and those around you. Dad also has a habit of whacking me in the face sometimes and it hurts emotionally as well as physically, but all I do is say "Oh I wish you wouldn't do that, I wonder why you do, is there something on my face, what can you see" and for the rest of the visit I stay out of range of that hand by sitting to his side, or holding it and rubbing it. Being upset at them is pointless, he obviously has a reason for doing it, that I can't understand or else he wouldn't do it, me getting angry or showing him the amount I was hurt is just going to upset him further.

    I still cry on some visits because I can't help it, but generally that only happens when Dad shuts his eyes.
     
  2. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Sad visits

    Just so you don't think by reading my original post here that I am perfect at this visiting game (I've never thought I was by the way, just know a few things that work which might help others). And just so folks don't read it and think, sheesh I do all that and I'm still a mess, I must be weak....

    My visit today was absolutely a killer, Dad was remote, appeared to be very glum and had a choking attack when he appeared to forget how to swallow more than once. Anyway, suffice to say, I sat there holding him today with tears just streaming down my face (though I'm good at not making a sound anymore). I hoped he was 'remote' enough not to realise. Last thing he needs to do is worry about his daughter as well as his own future!

    He's tried so hard to keep surviving, to hold on, (oops now I am sobbing!) why oh why is this happening to him?? No answers (unless you want to blame the aluminium). One of the carers came over, she must have seen my sad face and was very nice and told Dad he was a wonderful Dad, (it meant more to me that she said it to Dad instead of me) she knew because she had one just like him, unfortunately this made me cry even harder! But it was very nice of her, I hope she realises how I appreciated it, I will try to tell her next time, so long as I can manage to keep the tears back when I do.

    Anyway thats my sad story for the day....and....I'll let you know its not a one off occasion, these days happen, no matter how good at this you get. Today I just couldn't fake it.

    Please feel free to post on this thread if you have good and bad visiting experiences so others can read them and know they're not alone.

    Love,
     
  3. jenny millen

    jenny millen Registered User

    Oct 26, 2005
    4
    Mottingham, London, SE9
    Coping

    Hi Nat

    I've just joined Talking Point and read your story about your Dad and I'm in tears. My sister and I are like you though Nat. We go to Mum's home and SO many people don't have visitors but we go in and "fake it" all the time. We introduce ourselves to any new faces who arrive and that puts a smile on their face - they don't know who we are, whether we are staff or not, but just saying hello to them makes the world of difference.

    Like you, we've learnt what to say, what not to say, when to smile, when not to smile and we've now learnt how to dance ! Getting the residents up to dance gives you so much pleasure when they say yes and they smile and dance with you. Mum never danced before but the home provide a lot of music and she becomes centre stage when the music starts and again, like you, we cry silently watching her. We bought a video camera last year just before her birthday so now we take it along as often as possible to capture her on film. We know it will break our hearts after she has gone but what the hec - its how we want to remember her - wel not quite but we absolutely adore the lovely nature that she has now developed.

    Its tragic that so many people just "dump" their Mum or Dad in a home thinking that they won't remember.

    I so much want to share what you have written with my friend whose Mum has recently been diagnosed with Alzheimers - I've been there and struggled with the diagnosis so I know what she is going through - but I feel that everything you have written will help her.

    Thanks Nat - your words have really helped me.
     
  4. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Nat, thinking of you, know how hard this is, love She. XX
     
  5. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Jenny, so glad to have you on board, please keep posting. We are all in the same boat here, but at different stages of the journey, we all try to help each other through. Love She. XX
     
  6. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Thank-you

    Jenny,

    Thanks for the thumbs up. You have no idea how much that means to me (or perhaps you do? You must be pretty good at empathy by the sounds of things). So glad I could be of some help. Anytime....
     
  7. sarah crombie

    sarah crombie Registered User

    Aug 1, 2005
    4
    Visiting Coping Strategies

    Thanks for the posts, me and my brother/sisters adopt the same strategies when visiting Dad - we all deserve Oscars!

    However, I feel traumatised for a few days after each visit - particularly when he is distressed and crying and no amount of reassurance, changing the subject, distraction, a cup of coffee, whatever, can shift him into another mood - and I almost can't bear the not knowing how long this will go on for, and the constant adjusting to new symptoms and behaviour. Plus there's my fear of being hit by him, that thwack can come at any time accompanied by some strong language! Completely out of character of course - I strongly recommend everyone get a bit of counselling or psychotherapy as a support to help you through some of the difficult times, it certainly has helped me in the past.

    I wrestle with myself, enjoying a brief fantasy that I'll just give up visiting as it's often too painful, but of course know I'll plod on - probably...

    His absolute refusal to have his hair cut means he looks a mess and when he was well, he was always so well-presented, now he wears the same clothes, has put on some weight and generally looks dishevelled and would audition well as 'madman number 1' - I discuss it with the staff and their attitude is a resigned 'what can we do'?

    My mother died suddenly, now we have the contrast of this slow decline - and I admit I find myself thinking I hope it won't go on too long - and that he won't survive to go through the very late stages of the illness. And Im resentful that all his assets are being used to pay for his care - and there goes any inheritance we might have had!! All very unpalatable, but has to be said, you get angry!!

    Anyway - good luck to all of us - and Oscars to all of us!
    Sarah
     
  8. fizz

    fizz Registered User

    Oct 19, 2005
    6
    uk, mansfield
    can i have a oscar too, dont you all think its just you this is happening too?
    that noone else could possibly understand how you feel , what you go through
    big hugs to all of you.

    love fizz x x x x x x x
     
  9. Elise

    Elise Registered User

    May 12, 2005
    23
    Never a true word spoken

    Hi Nat

    Great minds think alike. I feel totally the same as you do. In Dads home there arn't many residents that get visitors, my self and only 3 others go in every day or every other day. Its saddens me to think that these dear people are just forgotten. I know that for most of the time my visit makes a difference for dad, sometimes when i get a beaming smile and asked where have i been, i know he is pleased to see me. I fail to understand families who's loved ones are placed in homes, just forget them. I have been struggling with my family for a long time now in trying to make them understand that if they visited more regular it makes a huge difference, but to no avail. My sister inlaw the other day was saying how she forgot to ring her aunt after visiting her for a couple of days to check that she was ok. She then said to me "its funny how easy it is to forget (out of sight, out of mind)". I wanted to scream at her and my brother to let them know my frustration, this is just an easy way out for them. If they don't go so often to see my dad than they don't have to feel what i feel everyday of my life, and you know that feeling im sure. Not having to deal with the every day pain, guilt, and frustration. No, they are far to busy getting on with there lives. MAKES ME SICK! :mad: I'm tired of fighting with them using all my energy up trying to get them to understand and maybe share a little of the burden with me, i can only hope that one day they will realise that they may end up in a home one day and how would they feel with the thought and realisation that there children have just simply forgotten them. My sister said to me 6 weeks ago "oh he was asleep for most of the time and when he awoke he didn't seem interested in seeing me" There's been no visit since. I fail to understand how and why so many relatives have this attitude, in other words NO CONSCIENCE. Someone said to me the other day, not every one has time to make regular visits with busy lives, blaa blaa blaa, how about these poor frail sick people, did they not have the time to bring up there children making sure they were safe and secure? I know that this is not in every case, every person has a different story behind them, but none the less they deserve more! I am so sorry to go off on one, thanks for listening. But your post always ring so true to me and i can always relate to what you have to say.

    Take care
    Elise :)
     
  10. Elise

    Elise Registered User

    May 12, 2005
    23
    first real shock today

    I went to see dad today to do his feet, foot spa and massage. Last weeks massage went well and he seemed to relax and enjoy it. Today he was in his room and had wet himself, looking very uncomfortable, so i got help to change him. His feet are swollen again so it was a little harder to get them in the spa, especially as he was not wanting to bend his knees. I got there in the end. Whilst drying his feet he started to ramble so as usual i went along with him. As i was massaging his legs and feet he took me by surprise and hit me around the head, not so hard but none the less i was shocked. I found myself asking him why did he hit me,and repeated it two or three times whilst trying to hold back my tears. My dad has never hit me its always been the other carers that he has lashed out on. I know its not good if he hits anyone and i also know he really does'nt mean it, but i thought i had something different with him in this illness, maybe him knowing and holding on to the fact that i would never hurt him and only doing my best. He has always looked to me for reassurance and i have always given to my best ability. There was something in his eyes today that really scared me. I'M LOOSING HIM. Can't quite see the key board through my crying right now, but i have to put how i am feeling down as i don't have anyone to talk to at the moment. Nat mentioned in her thread about faking it! I did a good job today never showed the staff or dad that i was affected, with my sadness, frustration and anger but really let rip when i got home. I guess i have to come to terms now that there will be other times that he will get aggrivated with me and may lash out again so just be on my gaurd, whilst still loving him and trying to reasure him of his fears.

    You know the really hurtfull thing from today, i found myself thinking if i can't have dad back and i know i that will never happen unless the miracle i pray for every night is granted. Ha! Then please don't let this get any worse for him or me...Sorry, had to have a breather, can't stop sobbing. I am so afraid of what is to come even though i read others stories and see other residents who are quite bad but nothing compares to seeing my own dad suffer. I try to push the wish for him to be taken quickly back into my head but it won't go away, and i feel so guilty for wishing for this. I just don't know how much more i can cope with on my own, and i am on my own, my family are useless and hopeless. I am haunted evey day and they have not a clue. Their little gestures of asking me how he is does nothing to help me or dad. I have so much anger inside, things i want to say to my family, and i know if i said them then that would be the end of a family. I have to stop my self from doing so for the sakes of my children. I don't want them to be witness to a family feud. And i know dad would not want this.

    Forgive me for going on so much but this sight is my only place for release.
    Thanks Elise
     
  11. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Elise, I remember the first time my Mum hit me and I can well understand what you are feeling. How I hate this wretched illness. Sending you a big hug, hope tomorrow is a better day for you. Love She. XX
     
  12. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear Elise, have no idea what you are going through, but you are not alone.
    Try and hang on in there, tomorrow will be different. I did not say better, just different. Take good care of yourself, Connie
     
  13. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Oh Elise, my heart hurt reading your thread, I know exactly what you are feeling like, so exactly that it is scarey! I too always took a little (probably childish) pride in the fact that I was the one who could handle Dad best in my family. While he would be stubborn and belligerent with others, I always knew how to ease him into things. And then on a couple of occasions he looked at me as though he hated me, has whacked me, and I felt like a big pit had opened up in front of me. All my delusions that our special love and understanding would last through this and help us get through this together no matter how hard, were blown out of the water. I felt like I was reeling from the shock....any of this sound familiar?

    All I can say is take a deep breath, and don't assume that you can't rely on that bond anymore with your father. I would hazard a guess that perhaps the humiliation of being wet got to him, perhaps he had a moment of confusion about what was happening with his feet, but something made him strike out...often with Dad it appears to be hallucinations of a kind. Dad has gotten really really angry with me, when I have been involved in him having his underwear changed, horrible, horrible look in his eye.

    The hurt, pain, sadness you are feeling....like I say, this too in time will pass. Like you I knew it wasn't logical to be upset by my Dad's behaviour, logically knowing he wouldn't have meant it, or at least the Dad I knew before Alzheimer's wouldn't have meant it. But the realisation that even your special bond can't withstand the ravages of this disease is like a slap in the face....someone or something out there seems determined to prove to me that every belief I had about the world is wrong, you can be as loving, good, caring and honest as you like and still just get slapped in the face every day, while the rest of the world carries on around you not even trying to be good people and they all seem to be having a pretty good time of it. I guess this disease is the ultimate test for those of us who strive to do whats right all their lives.

    So Elise dear try to gulp back those tears, your Dad still loves you deep down inside, he is just getting confused, his perception of the world around him is getting really messed up. You are doing a wonderful thing keeping your heart open to him, despite all this pain. I have found that over time, (the great healer) I have learnt what triggers these reactions from Dad, or at least can see them coming on, and like everything else now, I 'manage' them. Even if that means just backing off during my visit, I just sit back and let him know I am there and I am trying my best, but that we'll have to just ride this mood through until it is over, there is nothing else we can do about it. Well at least this is the meaning I try to give out to him. Use your special bond with him to do the same, you can with practice sense the change in them, and these are the times you need to start being careful, trust your Dad but don't trust what the disease might cause him to do. Sensing the 'danger' periods I find is easier when you are really close to the person and in tune with them. See there is some benefit to being so close!

    Hope my ramble has helped you feel a little better. Please know I really do know that pain.

    Hugs,
     
  14. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hello Elise

    I am so very sorry for you, I understand totally how you feel.

    With me the trigger for the feelings you have at the moment was the day Mum looked through me and her eyes were dead, I could not see any of her in them and I felt totally rejected, months later it still hurts to think about it.

    Since the I have had some lovely times with her, and they do help heal the hurt a little.


    I also find myself hoping for a speedy end to Mums suffering, not for me, but for her sake, she should be with Dad, at his side as she was for 54 years. I used to feel guilty for thinking that way, but not any more.

    Since stopping the galantamine she has "dead eyes" again and seems to be allowing herself to be dragged into the depths of the disease with no attempt to fight back, she seems sad, lonely and so very vulnerable at the moment.

    My family, with the exeption of my brother are very supportive, my husband and children especially so.

    My brother (what is it with so many brothers?) is obsessed with clinging onto as much of the inheritance as possible and is causing a lot of trouble at the moment. If he put a quarter of the time spent causing problems into actually thinking about or visiting Mum, we would all be happy, but we can't choose or change our relatives, unfortunately.

    My sister and I who had a very uneasy relationship for years have grown a hundred times closer, so good can come out of a bad situation.

    I sympathise and understand exactly where you are right now so never feel you have no-one to talk to, we are all here at the click of a mouse. I really don't know where I would be if I hadn't found this site, it is theraputic and informative all at the same time.

    Take care of yourself, and heres hoping for many more good visits with your dear Dad.

    Kathleen
    xx
     

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