Will the 'real Mum', please step forward!

Discussion in 'ARCHIVE FORUM: Support discussions' started by Nancy B, Mar 23, 2008.

  1. Nancy B

    Nancy B Registered User

    Mar 23, 2008
    My mother-in-law has Alzheimers - a fact which is accepted by all members of the family. However, our experiences of her differ to such an extent as to be causing real problems between family members.
    My husband and I 'know' her to be "a bit fuddled" from time to time (e.g. she will ask what we plan to have for dinner four times in the same conversation and she will sometimes forget words and names) however we can still hold quality converstions with her during which she will ask insightful and genuine questions about family members and family life - she can talk about politics and what she's seen on the news or read in the paper. She will despair about her lack of mobility (due to a recently fractured hip) but talk with hope about the event of the summer and her wish to once again be able to walk to the shop for her paper and 'run for a bus'. We offer her lots of practical support and always find her to be kind and warm and grateful for all that we do and she genuinly enjoys it when we visit.
    Her realtionship with other family members is however very different and fraught with problems. She seldom speaks well of them insisting that they are trying to control her and don't listen to what she has to say. She says she feels neglected by them and while I have no doubt that they do care they provide her with little or no practical support.
    The family members in question experience my mother in law as angry, abusive and difficult. They consider that her dementia has developed to such a stage that residential care needs to be considered - they no longer see the person she was and even more interestingly they do not see the person we see. This dissonance has created real problems in that it has become impossible to discuss or plan for her needs.
    Is this an experience that has been had by others using this forum - can people with Alzheimers present differently to different people?

    Nancy B.
  2. DuskStar

    DuskStar Registered User

    Mar 22, 2008
    Oh yes. My Granpa was terrible to us, yet always a perfect angel whenever social services came to visit. I never really understood how he did it, but it made assessing him and getting help very hard!
  3. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    Dear Nancy,
    Welcome to Talking Point.
    From my own experience, the person with AD/Dementia can when they feel safe with relevant people can be talkative, animated, relax and in control.
    When they are in the company of people who lack commpasion, understanding, the person can get aggitated, confused and frightened.
    It would be worth while keeping a diary, writing down your experience and what the other members of the family are saying.
    Someone will pick up on the thread later on and offer advice.

    Best wishes
  4. Nancy B

    Nancy B Registered User

    Mar 23, 2008
    #4 Nancy B, Mar 23, 2008
    Last edited: Mar 23, 2008
    I read an aticle recently which indicated that while cognitive function may deteriorate the emotional aspect declines more slowly and that this can lead to situtions where old and unresolved past issues which were 'managed' when the Adzheimers sufferer was fully 'with it' is given full rein and goes unchecked when the cognitive function slows down.

    I know that my mother in law had many issues in the past with some of the other family members and I wonder if this might explain whats happening.

    Also if the Alzheimers sufferer can 'behave' in front of others (be it family members or professionals) does this indicate a level of control that we might be able to 'tap' into to good effect?
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I would be very surprised Nancy. The good behaviour might be controlled by those who are cared for, but very rarely have I heard it can be controlled by the carers. :(
  6. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Nancy

    I think what often happens is that people with AD may lose their social inhibitions.

    If you and I feel that a family member or friend is not being supportive or helpful, we'd tend to avoid saying anything to avoid making the situation worse.

    A person with AD tends to say exactly what is in theor mind at that moment, without thought for the consequences.

    So if your mil feels that other family members are not sympathetic, she'll react accordingly.

    But you could also be right, that issues from the past, which your mil has until now kept bottled up, are now coming to the surface.

    Obviously, she feels happy and secure with you and your husband, so behaves perfectly.

    Is it a problem for you to be the main carers? Do you want other members to take a more active role? Or would you be happy to see mil in a home?

    You have to accept that the antagonism may not change, or at least not for a while, and work out what you would like to do. I think if the rest of the family want her in a home, you might have to go along with that, or accept responsibility for her care.

    Unless of course you can persuade them to amend their own attitude to her.

    Difficult position, I know. Families don't always make life easier!

    Good luck,
  7. Will the 'real Mum', please step forward!? Well, I guess if she could, then she would (perhaps!), but if she can't, so she won't (definitely). So perhaps your Mum has that skill still - to decide which to opt for. (Does that make sense?)

    And yes, I think it is possible still to present different faces to different people, depending on the 'occasion', and depending on the degree of loss of functioning. Especially if that ability has always been present in their pre-dementia 'person'. Just like the Manager-Person can present him/herself differently to different people on different occasions - a skill acquired along the line. But I don't know your Mum, so can't judge that one.
  8. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    I do think that people, even with dementia (or perhaps especially with dementia) can be very responsive to atmosphere. That is: if you're tense they are tense. If the rest of the family are "simmering" when they are dealing with her, I'm not surprised that the relationship is fraught. The other issue that may be coming into play here is that sometimes people will fixate on someone as being the root of all their problems. It's too painful for the sufferer to come to terms with the illness and therefore any problems they may have is due to external influences, or other people's behaviour. I assume you've checked with the others as well? And that they are experiencing a poor relationship? I mention that because you can't always take as gospel reports that you may receive, no matter how logically presented.
  9. Nancy B

    Nancy B Registered User

    Mar 23, 2008
    Hi Skye et al,

    thank you for the helpful observations. My husband and I are not in a postition to become full time carers for his mum - we have a small house, live some way away, have full time jobs and a young child but even if this wasn't the case I don't think that either one of us would want to take responsibility for her care on a full time basis.

    We can however visit and provide practical support a couple of times a week, maintain daily telephone contact and have been able to tap into good services in the area in which she lives - and there is potential for that to be developed further as her condition develops.

    Our problem lies in the fact that other members of the family are for all intents and purposes sabotaging this community based approach - whether out of ignorance or fear or because it would be easier for them if she was "somewhere" they are doing little to assist and support her. They are being constantly negative about our efforts to support her and appear almost vitriolic when they can evidence an incident or event when she has clearly presented as demented.

    In actual fact it would in fact be easier for us all if she was in residential care but it is my view and that of my husband that she is entitled to be heard (she doesn't want to 'go into a home') and if we can maintain her in her own house within her own community then we should do this for as long as possible.
  10. Nancy B

    Nancy B Registered User

    Mar 23, 2008
    Hi Jenniferpa,

    I can verify the fact that my mother in law's relationship with the family members in question is fraught. They ring on a regular basis to tell us of some incident or other when she has taken the time to castigate them over what she perceives as some failure or other on their part.

    I have not doubt that this is the case and that their experiences of her are very real - I am sure it must be awful for them to be constantly 'under attack'. However I think that if they could just relax and 'go with the flow' in terms of accepting her where she is at it would ease the tensions for all concerned.

    It has become a vicious circle and we are worn out!
  11. Been thinking about your question, and have thought that perhaps, and only perhaps:

    in the same way that some people (not dementia-sufferers) can press the equivalent of the "Delete" key, and then erase or conveniently forget that which they may well have said in the past, then the same must be possible for a dementia-sufferer: namely,s/he never said it, hasn't been in touch for weeks/months,(when you/I suspect otherwise);

    or alternatively she or he is doing this/that/the other, in the same way that we too can create situations which perhaps never existed. But we are accepted as being 'normal' or 'sensible' or 'reasoning' even though we may be inventing a whole scenario, for our own reasons, of course!!

    So if it's ok for the non-dementia sufferer to press the delete key, then surely it's ok for the dementia suffer to do likewise.

    We all dream and fantasize, so why should not they? We invent, why should not they? I often can't tell the difference. All I need to do along the line is to work out for myself how to handle it all.
  12. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Unfortunately I'm not sure that this is salvageable. Are these relatives physically closer to her? And are they the ones who end up having to go round and deal with problems? If so, it may be that they can no longer see the woods for the trees and I think it is highly unlikely that anything you can do, other than take of the lions share of the caring, will change matters.

    While I understand some of where you're coming from, it might be worthwhile for you to investigate other possible living situations. Care Homes are not all bad, while extra-care or very sheltered accommodation might also be suitable. I very much wish I had persuaded my mother to move to extra-care housing before she became as ill as she ended up: she would have got a lot more out of it, and would have found the companionship helpful. I would have found the "monitoring" aspect a real life saver and actually, she might have lived longer if she had moved earlier - at least there would have been someone to ensure she took her prescribed medication and ate properly. Sorry - I've digressed, but I just want to make you aware that there are options between staying alone in your own home, and moving to full residential care.
  13. Nancy B

    Nancy B Registered User

    Mar 23, 2008
    Thanks Jennifer,

    We have looked at the residential option and are fully prepared for the fact that this may be the better and only option in the longer term. But up until about 4 weeks ago my mother in law was managing very well - she was looking after herself and her home, doing her own shopping and cooking and had her busy little daily routine. However a fall which resulted in a broken hip put pay to this for the moment and she is still in recovery.

    We fully accept that a trauma such as a fall can escalate a deterioration but we want to give her an opportunity to recover before leaping ahead to residential care. At this stage she would be distraught if she had to leave her home with all its memories - I also think she's probably never forgive us (though she may one day forget!).

    The other family members see her less often than we do at the moment and do not provide the practical support that we do so they are not being put upon in that sense - I do however accept that she does ring and 'nag' them about this and that and this is very difficult for them to deal with. I genuinly sympathise but it is a sad fact that their staid, emotionless, fearful responses to her are not helping.

    What a mess!
  14. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Nancy - it's very sad but unfortunately, you can't force people to "care" in either an emotional or practical sense. If they want to change they will, but you'll never persuade them unless they want to, and I'm afraid to say, it will be a waste of time and energy trying.
  15. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    #15 Tender Face, Mar 23, 2008
    Last edited: Mar 23, 2008
    That's a very poignant observation, Jennifer. Not sure that this of any help to Nancy - but I have noticed a 'weakening' of my mum's relationship with her own sister ...... (the two were previously bonded as if with superglue and I was always a poor second somewhere) .... even if mum is not openly appreciative of my own efforts for her I was startled yesterday when she reported that her sister had been as planned (how many months since the last visit???? :mad: .... and mum grumbled 'Well, she didn't really bring much'!!!!!! Then they had gone out for lunch when mum was clearly not physically up to it ........... Vibes, just vibes, that mum does know who is really looking out for her?

    I do appreciate my aunt is often at the receiving end of repeated phone calls from mum but she really has no idea of mum's day to day needs ..... nor to expect the unexpected and go with the flow at any given time ..... nor that whatever 'grand plans' you may have - the ability to 'change agenda' to meet my mum's needs on a given day is paramount ....... and I think mum has realised that too, now. Which in a small way would be good, except it's a terribly sad situation ......:(

    Karen, x
  16. Margarita

    Margarita Registered User

    Feb 17, 2006
    #16 Margarita, Mar 23, 2008
    Last edited: Mar 23, 2008

    I don't think so

    May be she like your family more then she like this other set of her family , some people who do not have a dementia are like that anyway they just keep it to themselves

    Just now she has dementia , she can lose her temper more as she can not control it so good any more , she just showing her distaste in anger , your have to find out what was the relationship like with your mother in law with this other family, before she had a dementia
  17. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Nancy, seems to me like you are giving her a chance to see how she copes. You have to do that. You will never forgive yourself if you "put her" into a home when it is not essential, and other support services are there to enable her to stay independent. If I could have done that for my mother, I would have pulled out every stop to do so. In fact, I am still not sure I couldn't have done that for my mother, but she is in a care home now, and I have this guilty feeling that it didn't have to be. It does now, there is no turning back, but if you can find some way of keeping mum in her own environment, safely, then you are stars. And you must give it a try.

    It might be that a care home is the only way forward in the end, but at least you will have tried the alternative, and I urge you to do so. I wish I had done so. I think I was just shellshocked by the diagnosis and didn't have a clue where to turn. Wish I had investigated more. You do that. Never mind the rest of the family who are prepared to write her off asap. She might have a long time to live, and she deserves to live it in the best possible manner. All credit to you for trying to sort that out for her.

    Much love

  18. AJay

    AJay Registered User

    Aug 21, 2007
    Hi Nancy

    I too felt I should give my Dad a chance to cope and tried my utmost but sadly I've had to take the residential care option, he totally refused to accept social care as his AD worsened and life became such a struggle for us both though he wouldn't admit in a million years that things were difficult. There's no way that I could have moved him into my own house, our relationship has been volatile and complicated since I went to live with him at age 8 and though we got along fine for a number of years after Mom died he seems to be reverting back to the way he treated me when I was younger.

    Picking up on the point of changing relationships, we moved him down from Scotland over 4 years ago so that me and my sister could look after him, he was starting to struggle and was very isolated on his own up there. Within 6 months he'd told my sister that he didn't want anything to do with her. His reasons were at least 30 years old and trivial. Nothing would change his mind, I recognise now that it was the start of his AD but we didn't realise it at the time.

    Also, I think that because I wasn't stronger with both Dad and myself about getting help in, my own relationship with him has deteriorated. I got so stressed out with the responsibility of looking after him on my own, working and trying to redecorate and renovate our house and garden (still largely unfinished after 2 years!) that my stress levels were incredibly high and I gave him no leeway in his life. Dad of course picked up on every second of my stress and responded likewise. He now shows aggression to me when he gets confused and at the same time be absolutely fine with everybody else round him but I think this may be for the reason I mentioned earlier on.

    I'm not quite sure what I'm trying to say, I think yes try everything in your power to give your mil a chance to carry on being as independant as possible but be prepared for the changes. I don't feel I was prepared or informed enough and it's bitten back in ways I never thought possible.

    AJay xxx

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