Difficult return from Christmas

Discussion in 'ARCHIVE FORUM: Support discussions' started by JamesR, Dec 27, 2005.

  1. JamesR

    JamesR Registered User

    Dec 6, 2005
    #1 JamesR, Dec 27, 2005
    Last edited: Dec 27, 2005
    I have just returned from visiting my parents (my mother was diagnosed with AD about 6yrs ago).

    I am so glad to be back and counted the hours down to my return to my own home.

    I would be interested in how other panel members who are occasional visitors to someone with AD cope and what sort of reaction you have..

    I find in her company that I cannot seem to approach things without having a "don't do that, come this way, no not that person, this person....etc" type manner which seems to be perceived by her as scolding and she gets annoyed especially in public situations where really it is embarrassing if she does things wrongly and resents being told to do or not do something.

    As an example today we had to cut short our lunch out in a pub because she refused to sit down and was getting extremely anxious about wanting to leave even though we were mid way through our lunch (ie we ordered and ate a main course but had to leave before having a dessert - the two "delays" in waiting were too much obviously ). As soon as she finishes her food she immediately askes where we are going, implying that she wanting to go home and then tries to get rid of her plate (this seems to be a big fixation for her)...then she wont sit down again for more than 30 seconds....what are we to do? just say "oh hell with lunch let's just give up....." Asking her politely to sit down and let everyone else finishes seemed only to work briefly before having to ask again.

    Anyhow I feel at the moment really annoyed and angry at her even though it is not her fault. I suppose I think of all the time as children we were scolded and smacked for behaving the way she does in meal out situations....hence good "table manners" and waiting for others to get their food before eating yours/not getting up before everyone has finished were hard wired into us. trying to explain to her that this is good manners seems to not register now.

    Meals out now seem while doable seem focussed on ordering food as soon as possible (she expects food within maybe 90 seconds), watching her mash everything up (a huge desire to chop and cut everything into very small sizes or mush), eating a reasonable amount of it quickly and then wanting to leave the moment she is finished. So a lunch out can be finished in barely 30 mins and then she often wants to go home...

    Any tips from anyone on how to do meals out and how to correct or improve meal time behaviour without ending up in a battle?
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    yep, that one is easy.

    You enter their world, and don't expect them to conform to yours.

    You have the ability to see what is appropriate and not appropriate in a given situation, they do not. They cannot, it is not a matter of choice for them.

    So you either find a way to distract them, if they want to get up in the middle of a meal ["the bus doesn't come for another 10 minutes, and it is too cold to be outside" may suffice if used repeatedly for several hours.

    If none of this sort of distraction works, then..... don'e eat out with them. It may be too late for that from now on. Treats are no longer treats for them, they are trials.

    She is not a child, though may often seem like it.

    Main thing is to remember, you visit sometimes. You are being invited into her world. She cannot be invited into yours. Trying to change behaviours may work if you are with her all the time and build up some patterns that work. With occasional visits that won't really be possible.

    It is the dementia not her, so try not to get angry. That does no-one any good.

    It takes pressure off not to go out in public, after a certain stage.

    Good luck!
  3. daughter

    daughter Registered User

    Mar 16, 2005
    Hi James,

    I visit my Dad a couple of times each week but I do understand the relief you are describing about leaving because, as much as I love my Dad, there are times when I just have to get away. I feel quite selfish but it's usually when I'm feeling a bit low myself and cannot cope with the whole situation.

    Regarding the meals scenario, my Mum decided last Summer not to take Dad out for meals any more. He would behave exactly as you described with your Mum. It was no fun for anyone, Dad included. Nowadays we just visit tea-rooms, for tea and slice of cake, where we can all relax a little. No queuing and not much waiting.

    Naturally, as soon as the last cake crumb has been eaten, we have come to expect the "are we going now?" remark but, as Bruce says, that is the dementia and is not something that can be controlled. It helps if you are prepared for this to happen and, after a few attempts to delay (I'm not sure we could hold off for several hours as Bruce described!), accept that you will be leaving sooner than you'd expected.

    Best wishes,
  4. Jude

    Jude Registered User

    Hi James,

    Although my father still really enjoys going out to eat, my mother has very similiar reactions to yours and can become very anxious and agitated when taken out of famililar surroundings. It's a very common symptom of AD, but you can work around it until the time comes when it really becomes too upsetting for her.

    I usually take my parents to a quiet country pub. We go to the same place every time and the staff know that my parents have AD and always make them very welcome. We also go early to avoid the possibility of a lunch hour rush, because my mother becomes nervous with lots of people moving around.

    The pub has a very beautiful garden, which is really handy in the summer because we can sit away from other people and the floral displays are useful for distracting my mother and help calm her down.

    I normally order a small lunch [child's size] that she can easily eat without having to cut things up too much - soup or a casserole works well. If she wants to eat something that requires cutting up into small pieces, then I do it for her. If she likes to mash everything up, well that's okay too. Some people with AD have problems with swallowing, so mashing food is the best way to encourage them to eat.

    We can usually stretch lunch out to just over an hour before she really wants to go home again, although the promise of ice cream as dessert often gives us an extra 20 minutes at table. When she becomes agitated, I draw her attention to a particular flower or a colour in the garden. Quite often, we get up from the meal and go over and investigate a specific shrub. [If you order salad, then your meal doesn't get cold...]

    During the colder months or on days when she is particularly anxious, we generally go to a local garden centre. There's lots of pretty things to look at in the undercover section and gift shop, as well as a pet section which my mother always enjoys. After a wander, we then have a cup of coffee and a cake. This option quite often works much better than expecting her to sit down for an extended time [for her].

    As far as being embarrassed by my parents, I'm not at all. They are 88. They aren't mentally ill - they have AD. Okay, so they get in a bit of mess at mealtimes on occasion - just have plenty of paper serviettes handy and order 'easy' food. I wouldn't worry about your mother's lack of 'manners'. If she didn't suffer from AD then her manners would be impeccable. Who cares what anyone else thinks - does it really matter?

    As Bruce says, there will come a time when it is no longer practical to go out to eat in public. At that point, I think I'll try picnics.

    Best wishes,

  5. JamesR

    JamesR Registered User

    Dec 6, 2005
    Thanks for all your replies...

    My parents tend I think to do as you do Jude - go to very similar places where they know that the food is served quickly and choices are limited. They also seem to like Garden Centres too for food - I think partly because the age of the clientele is very similar and the staff tend to be very accomodating as a result plus the surroundings may appear more airy and spacious compared to sometimes claustrophobic olde worlde pubs.

    I think I take a very British attitude to "embarrassment" in public...ie that I am acutely sensitive to her walking off or talking to the people at a nearby table and try and drag her back. My Dad by comparison just lets her go and then sure enough she normally comes back 40 seconds later.

    I think my fundamental problem is she does not really know who I am clearly so does not respond well to my comments or requests for her to do/not do things. She only really responds to my Dad and will only ever ask him things eg where are they going? etc. After the pub incident yesterday she was standing in the car park 10 ft away from me looking incredibly anxious and lost and not in anyway being reassured by anything I said - Dad was just popping to the loo but took a while to come out after settling the bill too. She only looked better when she caught sight of him. I felt effectively like a complete stranger. That is what is distressing and making me feel upset/annoyed.
  6. Claire D

    Claire D Registered User

    Nov 30, 2005

    I do understand how hard it is watching those we love behave very differently as a result of AZ. Bruce's comment about entering their world - is some of the best advice because that is exactly what you have to do. As soon as you do somehow it seems a bit easier to deal with.

    My mum hasn't been out now for about five years due to other complications than just AZ - she has Parkinsons and osteoporosis as well. Dad has to cut up all her food for her which I know she still finds demeaning - even though she realises she is not strong enough to do it herself. She also worries about not being able to eat as quickly as us and the fact that she drops food on the floor as she ends up at a very strange angle when sitting at the table (so she doesn't sit at the table very much these days only special occasions like Christmas!) - all of which is not just distressing for us but even more so for her - as somewhere in whatever is going on in her mind she realises that this is not the way it should be.

    I now look upon "going on the journey" with her every time I visit and have found that by doing this I am learning with her about this illness and for us it seems to have improved our relationship. It is harder for Dad because he is caring for her full time and I can see he gets tired, upset and sometimes annoyed but this is because his wife of 53 years doesn't remember that's who he is - and seems to think that I am her older sister (she's never had a sister!!) So.............. try letting go of how you think they should behave and try embracing the more unusual behaviours you are experiencing with your mother .........and just see what happens! All the best for 2006.
  7. Lynne

    Lynne Registered User

    Jun 3, 2005
    #7 Lynne, Dec 27, 2005
    Last edited: Dec 27, 2005
    Poor James (& I mean that sincerely)

    Your posts clearly demonstrate the difference between coping with AD by living with it, and the distress felt by family members who (of necessity) can only visit, perhaps infrequently. It must be SO painful to realise that your Mum doesn't really remember you, and that you cannot 'reach' her when she wanders or gets confused. Likewise the very British attitude to "embarrassment" when she does something unconventional in public. It's become second nature to your father to take such things in his stride (note: I didn't say it was easy) and he has probably worked out strategies to cope with them; also of course, Mum is reassured by his constant presence.

    Basically, you will have to lose a bit of your British reserve when with your Mum, and adopt a mind-set of "This is MY MUM, and I love her, even if her behaviour is odd, so there!" Don't hurt yourself by expecting things to be perfect just because she has a visitor, AD takes such niceties of behaviour away. In many ways she has become, in temperament, a small child again. Dependent, impatient, demanding. It's not her wish to be so, it's this awful disease. I think accepting her as she is (and this is likely to change at each visit) will be less painful for you, and enable you to be more supportive to your father.

    And don't feel guilty about the sense of relief at returning home, away from her. That's very natural; just remember that your Dad has no such opportunity for such relief (or maybe I'm speaking out of turn, and he does?) I'm sure you are thinking about his pain & distress at the decline of his beloved wife & life partner as well.
  8. JamesR

    JamesR Registered User

    Dec 6, 2005
    Have either of you found that your parent does not really acknowledge who you are? And therefore does not respond helpfully to anything u say...ie ur are endlessly waiting for in my case my Dad to come out of the loo or out of the house to reassure them?
  9. Jude

    Jude Registered User

    Dear James,

    It's pretty hard to come to terms with the fact that one or both of your parents don't know who you are any more. It hurts and it is incredibly frustrating! I'm sure that the anger you're feeling is directed at the disease itself rather than at your mother, if you really think about it.

    The biggest shock I ever got was when I arrived home from o/seas not knowing that my parents had AD. They said 'It's lovely to see you - who are you?' Sadly, they weren't joking! My father often refers to me as 'the bloke who drives our car' or 'the woman who handles the office work'. It no longer upsets me. At least they acknowledge that I am part of their lives, even if they can't really remember my name. It's okay - I'm in there somewhere....

    We have never been a physically demonstrative family unit. This was more to do with my parents being a bit remote I guess, but we always had great verbal communication. In the past years as my parents' AD has progressed and they've lost their verbal skills, I've found it to be incredibly helpful to initiate physical closeness as a way of getting through to them. Believe me, it works wonders. I felt really sad when you said that your mother was 10ft away from you and looking lost and anxious. The simple act of holding her hand may well have made an incredible difference at that time - and will do on future occasions.

    Anyway, give it a go. Holding hands, hugs, kisses and arm stroking are all very effective ways of communication. My mother is very receptive to having her hair brushed or stroked when she is anxious and she really responds to this. When we are out of her 'security zone' I always try to hold her hand or touch her. It really helps. You may feel awkward at first as I did, but I'm sure she will respond, even if it is by being less anxious.

    Best wishes,

  10. Lynne

    Lynne Registered User

    Jun 3, 2005
    Dear JamesR,
    As yet, I can't offer you much guidance from first-hand personal experience, as my Mum is at a much earlier stage than yours. However, if you read through some of the threads here that will give you some idea of how things can develop.

    Best wishes
  11. Stimpfig

    Stimpfig Registered User

    Oct 15, 2005
    Hi James

    Apparently you are hurt and even angry that your mother didn't place her trust in you and you are sort of struggling to accept this. For an AD sufferer, it seems like out of sight is out of mind :eek: I am sure that if you were to ask your mother her own name, she wouldn't remember that either. What would be of great help is to go through all the info you can on AD to prepare yourself when you visit her next so that you won't find yourself caught off guard. For instance, she could even turn hostile towards you which might shock you further.

    Here is a ready link to a fact sheet which I picked up from TP:

    (Please ignore if you have already done so).
  12. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada

    Hi James,
    Although my mother recognizes my face, she is no longer certain of our relationship. So now I am usually her sister. On Dec 17, at a potluck lunch at her nursing home, she did call me her daughter, which hadn't happened for a few months. I nearly cried but that was her Christmas present to me.

    It's hard, but I have become more accustomed to being her sister or her friend. I am now her little sister. But she does recognize my face & I am grateful for that.

    As Jude said, physical touch can be very reassuring. I find stroking her arm or holding her hand calms her. I also pat a lot of the other residents on the back or arm also, as they are becoming part of my extended AD family.

    Hang in there.
  13. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    Hello James

    You will adjust to your new relationship with your Mum, I'm sure, you need to take your cues from her and follow her lead. It is not the end of the relationship you had, just the beginning of a new chapter in all your lives.

    I have always lived a few minutes walk from my Mum and late Dad so saw them almost daily, we always got on well, and for that I am eternally thankful.

    In the last few years as the AD has taken over slowly but surely, Mum has changed in so many ways as has my relationship with her.

    A few short years ago,I had a Mum and Dad who I could go to for advice, comfort, moral support and a good old gossip while we put the world to rights. Dad died suddenly last year and Mum went into a care home, not even realising her husband of 54 years was gone.

    Over time, the dynamic between Mum and I has shifted until I now have a Mum who knows me as a person, rarely her daughter, the home, staff and residents are her "family" now and it is a very happy place for her to be.

    Our relationship is still good, we still "chat" although with her speech disappearing, it is often one-sided, she looks like Mum and deep inside, still is, but she has become the one in need of guidance, comfort and moral support.

    I am still proud to be her daughter and love her to bits.

    Go with the flow and you will find a different Mum than you had before, she is still your Mum deep inside, and you will always be her son. Love her for who she is.


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