1. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Well, Mum is in a Care Home. 5 weeks. It isn't the greatest in the world, but which one is?

    I think once mum gets her new hearing aid, she will realise that the woman she has made friends with, isn't all that nice. Should I cancel the new hearing aid?

    She's getting used to the home. I like the staff, they know her, they have a good grasp of the kind of person she is, and they like her. Now that sounds good to me. They are respectful, and kind. And ordinary folk.

    She likes them too. That also sounds good.

    They don't seem to have much time to sit and chat with individual residents, or if they do it is only certain care workers who do that, cos they enjoy it personally.

    She didn't like the food at first, now it is fine.

    She says she doesn't get bathed, but they have a set schedule for bathing, which I have seen. Of course, it goes wrong at times, and mum doesn't always remember if shes had a bath or not.

    The trip out this week got cancelled cos the bus driver was ill.

    The activities co-ordinator could only come 3 days cos her baby was ill.

    The hall and stairs are being painted, so there is a paint smell.

    Does all this matter?

    I am still worried about my choice of home. But there isn't really another, and mum is getting increasingly confused about things like where she is. She can just about find her way now from the lounge to her bedroom to apply her cream to her sore bottom. In the alternative care home, she couldn't have done that, no way.

    She also uses her own room if she wants the toilet, and knows how to get there. That is important I think. She seems to have no idea that she is on the first floor in the home, and that the dining room is on the ground floor. Residents are taken down in batches in the lift. But last week when we went into the dining room for her to write a birthday card she said "Oh, I havent been in this room before". So if I move her somewhere else, is it going to be too confusing for her? I really thought she'd be quite mobile around this home, and she isn't. It now seems obvious that apart from her regular trips to places around her home, she couldn't cope with anything else at all.

    A couple of weeks go, we drove into Buxton town centre. She has been there many times with my dad, perhaps once a fortnight before he died. She had no idea where she was. She tripped up on a stone that had nothing wrong with it, we went to Boots and she had no idea where her purse was, we then went to Waitrose for some Cranberry juice, and she tipped the entire contents of her handbag on the floor while searching for her purse (which she'd just used). She seems to have gone downhill so fast, she was in such a muddle, she couldn't even fasten her handbag up again. I am just glad she is safe.

    I thought she'd be delighted about the trip into Buxton. We'd only been there half an hour. I thought she'd like a cup of tea in one of the cafes. I suggested it to her. No, she said, I think we'd better be getting back.

    Is this what others have experienced? I just didn't expect all this. I thought she'd be keen to settle into the home, watch the telly as she used to, talk about the news, football, Gordon Brown, like a trip into town, but it has all gone. She is now just a little woman sitting in a chair doing nothing. Has the care home done that to her, or has she just deteriorated. I don't know. It frightens me that I have done it to her by putting her there. Hey, here am I telling other people on this site not to feel guilty, and I am feeling guilty. Not guilty really, just that I don't understand how my mum has gone from looking after herself 3 months ago, to doing nothing at all now, other than sitting in a chair all day. It isn't what I expected and not what I wanted, but what can I do?

    She used to be a churchgoer, every Sunday a driver from the church would pick her up, take her, and bring her back. This was a little parish church. Buxton has a big church with two schools attached to it. I asked the priest to visit her. He has managed one visit in 3 months. I asked if they had a scheme to take the housebound to church. Answer No. I suggested they try it once a month. No response.

    Such a shame.

    Anyway, I am waffling as I do late at night. Sorry all.


  2. allylee

    allylee Registered User

    Feb 28, 2005
    west mids
    Hi Margaret,

    Ive experienced similar with mum after she went into full time care in March.

    Like you I regularly took mum out for mini shopping trips, lunches and visits to my home but her lack of any pleasure in them and agitation to get back to the home meant that those visits were short.

    We do carry guilt I guess for what we see as failure to keep delivering care at home and as a result peversely we look for things to add to that guilt.

    I did exactly the same as you and scrutinized everything in the home and beat myself up about it.

    My mum has also deteriorated and does little now, but Im sure that would have been the case if she had stayed at home.Theres no way I could have managed her care at the stage she is at now.

    Wise words from many on this site meant that I now see the situation very differently.
    Our mums are safe, well fed and cared for.Thats a huge relief to me after the stress and anxiety of never knowing what I was going to find when mum was still at home.

    Its taken me a few months to get there but I do have peace of mind now.
    Im sure with help ,support and time youll get there too Margaret

    Lots of love
    Ally xx
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Margaret,

    From your latest few posts I have got the feeling you are becoming more accepting of the lack of an `Ideal`.

    You are not 100% happy with your mother`s home, nor with the knowledge she is in a home, but as there is no alternative, you are slowly coming round to the necessity.

    Because your mother`s deterioration was so rapid, I believe you were, and perhaps still are, in shock. And now she has deteriorated further.

    Is it institutionalisation or further deterioration? Who`s to know.

    But there seem to be more positives than negatives as far as the home is concerned, and your mother is settling.

    It will never be the best, but it could be a lot worse.

    I wish my husband would feel settled. Sometimes I would like to speed up his deterioration, so he is less aware of what`s happening to him, and then he might not be so distressed most of the time.

    But we don`t have a choice, and have to make the best of what we`re given. I think you are doing just that.

    Love xx
  4. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    Hi Margaret

    I think that the basic problem with dementia care is that there is no ideal. Probably the best care would be 2 to 1 in their own home with their relatives living alongside as family, not as carers other than as and when they want but knowing that there is someone else to do it all for them. However I don't think that will ever happen apart ofr the few with limitless funds.

    However your Mum does seem settled. The deterioration I liken to wearing glasses. It is "My eyesight got worse when I got glasses. Therefore the glasses are to blame". My answer always is "why did you get glasses?" A: "Coz my eyesight got worse" Q: Do glasses prevent it continuing to get worse?" I think having a relative with dementia in a care home is the same.

    Don't feel guilty. You are doing your best and a re probably far more aboe to enjoy your time with her than if you had been a primary carer. If your gut instinct feels that the home is a good place that is probably for the best. I admit that there are things I don't like about Mum's home but I do like the atmosphere and feelings I get from the vast majority of carers. If you do feel unhappy maybe it is time to change, although the move could prove very disorientating for your Mum and that effect has to be considered in the over all scheme of things.


  5. Laylabud

    Laylabud Registered User

    Sep 7, 2007
    Hi Margaret

    I feel after reading your post i have this still to come, my Mum is currently in an assement ward in hospital and is waiting to be moved in to an EMI nursing home of which i am dreading. Back in July after coming out of hospital i took her back home to care for her, the 1st couple of days she was ok but then after that she got restless and violent, i tried to get her back into hospital but they would not take her so i had to get her into an emergency 72 hours assement residential home, that was really bad and as the week went on it got worse as they could not get any drugs to her, she was not eating and not washing.
    So as i said earlier that i am dreading her going into a home as i feel she will end up back in hospital. The way you mum is now is very similar i hope that she settles in the home, i like you feel gulity but since finding this forum realise that is not unusual to feel that way and i am slowing coming to terms with things.

    Let us know how she goes on.

    Layla Bud
  6. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Hi Margaret,
    I just want to discuss the deterioration aspect you mentioned.

    First thing, moving a person with AD is not a positive thing. There comes a time when we haven't a choice so we do it. Then our loved one seems to have a sudden abrupt decline. Why? I think some part of it can be attributed to the move itself but the main problem is that when an AD patient is moved somewhere new (and this can be a child's home, or a new house, not just a care facility), their inability to learn new things becomes overwhelmingly obvious to us.

    And now it's much more obvious because she's in totally new surroundings. Moving her again will not improve things. Since she's settling in and seems to like it, I personally would leave things. Yes, it's not perfect but nothing is.

    I would suggest that when you take her on an outing, to make it a simple thing. Go for a meal and a walk in a park, for instance. I found with my mother that shopping stressed her a lot (and me too, in dealing with her:) ) so eventually shopping expeditions were a thing of the past. If you can go into one shop, that's okay. But the big shopping centres are a definite no-no - too many people, too much noise (think of all the different music blaring out of different shops) too much everything. Too much stimulation that an AD person cannot process.

    So what you've experienced is quite common, I've heard it from others also. You've made the right decision.

  7. Jane1

    Jane1 Registered User

    Mar 3, 2007
    Hello Magaret,
    The one thing that shot out from your thread was that you said your mum is 'safe'. With my Dad, i know that too. I know i can't look after him so we had to find people that can. We have doubts that dad is in the right care facility but as someone else mentioned ' there is no ideal'. We can only do what we 'feel' to be right as there's no training manual with this illness!! As the illness developes, so too does our sadness for the person that was. Dad used to enjoy 18 holes round a golf course, sadly now a quick jaunt round Tesco's is the limit. When he's not able to do that, I'll adapt again. You are there for your mum, doing the best for her and that's what's important
  8. j.j

    j.j Registered User

    Jan 8, 2007
    hi margaret w, i could of wrote your post my self word for word, we experienced exactly the same with our mam after going into a care home, was it the az or the going into care which made things worse we will never really know, probably aspects of both, i was distraught at first and came to tp many times for advice, now am moving through things with a numbness, sorry hav,nt offered much help but certainly know where you are coming from.
  9. Taffy

    Taffy Registered User

    Apr 15, 2007
    Hi Margaret,
    This is a shame since church going was a big part of your mum's life. How hard would it be for the priest to ask the congregation if any of them would be charitable enough to give your mum a lift to and from the service. I was wondering if the church had some kind of monthly news letter where you may be able to place a help add, Just a thought. Regards Taffy.
  10. mel

    mel Registered User

    Apr 30, 2006
    Hi Margaret

    i agree with Taffy

    My dad was a regular churchgoer and he used to pick a couple of people up every week and take them back after the service.....he wasn't alone in this....a few of the congregation used to do the same

    Love xx
  11. KateJB

    KateJB Registered User

    Sep 13, 2007
    #11 KateJB, Sep 13, 2007
    Last edited by a moderator: Jan 17, 2008
    Symapthy for your situation

    I can totally sympahtise with your situation- although my mother is not yet at 'care home' level- it is not far off and worries me greatly. A friend of my daughter started a website recently [name of commercial web site deleted by moderator] where people can go and rate carehomes, but it is still early days with not enough reviews to be considered particularly useful. I'm just hoping when the time comes for me ( later rather than sooner I hope), it will be easier to make a choice about a 'good' home than it is now.
  12. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Aw, thanks all, there is so much support here for me. I feel so much calmer having read your replies.

    But tomorrow it might all change! Bear with me on that.

    I have actually been ill for the last 10 days, so haven't been able to do my usual 2/3 visits a week to mum, not seen her in 10 days. Chest/throat/sinus infection has really laid me low. I have felt SO guilty about not going. I have phone the home and asked them to tell her I have phoned, but it isn't the same, I feel so bad. I know youre all going to tell me I have no need to, but I do, cos there is no-one else to visit her.

    Yes, the church bit is a a little sad. The church she used to attend, in a small town, had a team of people taking the housebound to church every week. The church where she now is is a much bigger church, but they don't do that. Even once a month would help, I suppose I can do that myself, but it would be nicer if "the church people" did it, cos its another group of people in her life.]

    Will ring the contact tomorrow and see what she says.

    Thanks everyone.

  13. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    Hi Margaret

    I know what you mean about the guilt when you are feeling ill. I have been there. When I used to travel down the 250 miles to see Mum when I lived further away I also used to feel guilty when it snowed and I couldn't make it as the roads were closed, and the days immediately after the "hurricane" when I coudln't leave DH with 3 yo twins and no power and a house with bits haning off..yep that is when the guilt bites and it is so silly.

    However you are seeing your Mum soon and I am sure that you will both enjoy it. How is your Mum at speaking on the phone. Up until last year I used to chat to Mum at least 3-4 times a week on the phone. Because my sons were so small the staff in the home knew I coudn't give an exact time but I would jsut wait while they got Mum for a blether and if they were really rushed off their feet (I think about twice in three years) I would call back when I could.

    Some of the calls were strange, others perfectly luicd and I could be on the phone half an hour on those days. Sometimes latterly she would wander away from the phone and I would have to ring the home back to tell them to go and put the receiver down! Some nights I had to ring back to chat to nurse as she would say something that would worry me. But the reassurance for her, that her daughter had rung, was there.

    I spoke about what we, as a family, had done through the day. Asked her advice in the early days about problems and she would occasionally tell me of things that could not have happened!!! (My husband and sons cooked her a marvellous breakfast one morning for which I was told to pass on thanks to my better half!!)

    It let us continue the relationship we had had (as I had lived away for some years and we had always spoken on the phone, almost daily). Strangely enough now she is getting to the stage that I am not always sure she recognises me and it often takes my voice as well as sight of me to get those elusive signs, but it does help.


  14. mel

    mel Registered User

    Apr 30, 2006
    Oh Margaret .....the guilt monster has a lot to answer for!!!!
    You can't help being ill and you're doing the best thing by keeping away ......you'd feel really bad if you pass it on .

    Hope you feel better soon

    Love xx
  15. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    More thanks.

    I'm still feeling ill, the antibiotics have done nothing for the chest but have had a great effect on the digestive system!

    Mameeskye, I only wish I could ring mum and have a conversation. 3-4 times a week, crikey, I'd be demented. Lots of problems with that. Conversations with mum have always been difficult, she has absolutely nothing to talk about. My dad did all the talking, mum just nodded at appropriate points. She doesn't watch telly, doesn't read, doesn't have any hobbies, isn't remotely interested in my job (doesn't know what I do, doesn't understand). All she ever says about my job is "its time you gave it up, you are too old (55). Get a nice job in the village instead". (I'm a University lecturer). Eldest grand-daughter is an IT manager with HSBC but as far as mum is concerned she is a bank clerk! She has not a clue. Even before my dad died, she did nothing to initiate conversation. She could only talk about Tesco, the post office and the corner shop. Her world was always very small, and now it is even smaller. Even when a young woman, it was the same. Get up, get breakfast (cornflakes), dust and hoover, go to the factory in the afternoon, cook tea, watch telly (soaps), make supper, go to bed. No hobbies, no interests, no conversation. No entertaining, no visitors. She was always "too old" (her words) to do anything new. Mum, would you take me swimming? Oh, I'm too old for that (aged 32). Mum, could I have a friend to stay? "No, I am too busy". My friend has a mum the same age, she takes her on holidays to Rome and Paris, to the theatre to see Fame and Cliff Richard, they swap books (mysteries) and talk about them. She loved the Collosseum, Mum has never heard of it. Mum doesn't even read the weekly magazine I buy for her.

    In short, and it sounds harsh, but my mum is boring. Her sphere of experience, knowledge and interest is miniscule. And getting even smaller by the day. At least when she was at home we could talk about the gas bill!

    It is hard work. Not only the phone, which is impossible, but even visiting is just a chore. I haven't been disappointed that I have been ill this week, it has saved me the chore, but I think she will have missed me. That gets to me.

    So when I can't visit, I feel I am letting her down. Though there is no more conversation at the visits either. Half an hour and I am crawling the walls. How do you converse with someone with no conversation? What have you had for lunch? Have you had a bath this week? Are you warm enough in bed? That is about it. So when you say I will enjoy seeing her, I'm afraid I won't. And its true to say she won't enjoy seeing me either. She'll enjoy the fact that her daughter has been to visit, but she isn't interested in ME. If I sent a cardboard cutout of me, it would be just as effective.

    Eh, dear, what a state. I envy all of you who love visiting your parents. It's bad enough them being in a home, bu when you don't want to visit it is worse. I am being honest. I'd rather not go. Not because I don't care, but because I find it difficult. I just sit there and run out of conversation, as has been the same for the whole of my life with mum. We just haven't been like many mothers and daughters have. We did have "chats" when I was a child or teenager, I just did my own thing. I grew myself up. I recall she came with my to choose my wedding dress but only cos she was paying. There was no "Oh, that shape suits you", or "I think that is a bit over-dressed", no advice as such. Then there was the issue of grandchildren. I married at 20. Mum expected a grandchild pretty soon, but I decided to study for my Accountancy qualifications, which took 5 years in total cos I didn't have the right entry qualifications. We then tried for a baby and it didn't happen. We had fertility treatment, but I never told my parents. My dad would have sympathised, and my mum wouldn't have know what I was talking about. We kept it private cos it was my husband who had the fertility problem, and we agreed we would not publicise it for his sake. Why? I don't know.

    Then we got the remarks. I got promotion when I qualified at the ripe old age of 25. "Oh", said mum "I suppose you're going to be one of those career women who don't want children". Isn't that a nice mum? How tactful and loving. Wouldn't everyone like a mum who says that (and doesn't beat about the bush)? Never mind my fears, and feelings and distress. Doesn't it display the loving relationship between mother and daughter (only daugher, I add, in fact only child)?

    So no, I don't look forward to seeing her. I feel guilty that I have not. It is a chore I have to udertake, a task I have to do, and I always fulfil tasks. There isn't a choice.

    Ah well, this website is full of people who love their parents to bits and hate to see them in the state they are in. Here is one who doesn't love her parent to bits, but I still hate to see her in the state she is in, and I still feel guilty that I haven't visited. But she never visited me when I was ill (two major operations), with two tiny children. And never did a blind thing for me despite working only part time and living only 4 miles away. The past, sorry. I must stop it colouring my future, which I will do.

    I haven't worked out this website. Don't know if this reply is just going to Mameeske or everyone. Don't really mind. If anyone can respond on how to love a relative that you don't love, I'd be grateful.

    I'm going to be really awful now and say it really won't help me for everyone to tell me how wonderful I am, cos I know most of you will. It would be better if some of you could tell me why I am NOT wonderful, or if you accept what I say, how I can be more wonderful in the future.

    You are a great bunch, good luck to you all in your own difficulties.


  16. Nell

    Nell Registered User

    Aug 9, 2005
    Dear Margaret,

    What a genuine cry from the heart your post is! I felt very sad for you that your relationship with your Mum has been so difficult in so many ways. It sounds like you take after your Dad, who was obviusly more involved in the world than your Mum has ever been.

    May I just say though that even good relationships with one's parents don't always follow a completely happy path? I'm sure you know this is true. Even those of us who love their parents dearly may have (dare I say, DO have!) issues that are hard to resolve?

    I love my Mum (and Dad before he died) dearly, but they were not "ideal" parents in any way. Both of them had typical upper class English upbringings (how odd!! in Australia!! :eek: ) and were never very good at being parents. There are countless instances, but suffice to say, I know where you are coming from!

    The heartbreak of childlessness has obviously been a very big burden for you, and my heart bleeds for you. It would have been a comfort if you could have confided in your Mum, but sadly, she was not the right person for this.

    As for visits now, could you consider an "activity", even if you end up doing most of it (all of it?) by yourself? I'm thinking of jigsaw puzzles; putting photos in an album; even colouring in?? If, as you say, Mum just wants to know you've been to see her, could you do something to pass the time as you attempt to chat to her?

    You may not be wonderful ;) , but you are a caring daughter doing her very best in a truly difficult situation. No-one can ask more of you than that.

    Sending mountains of caring wishes your way.
  17. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    I have just read your post Margaret and just 'feel' for you. I think Nell has given you a most wonderful reply so will not try to add to it.

    I have PMed you in reply to yours to me.

    Take care and hope your infection/virus will be cleared soon.

  18. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Margaret,
    Ok you are not wonderful! Feel better.
    What is love? A load of mushy feelings? I think not. I think it is to do with continuing to be there when we dont want to be; it is taking those verbal knocks, and still going back for more; I think an awful lot of people on here know how you feel. I loved my mum, but went for several weeks without visiting her - just cos I didnt want to.
    Sometimes we all just need to cut off - to feel a sense of freedom, a lack of responsibility and duty. You are not on your own.

    Love Helen
  19. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    I understand completely about visiting being a duty and not something to look forward to. Even though I had a wonderful relationship with my mother before, the illness changed everything for me.

    As her behaviour changed for the worse, I became more and more duty-driven. I try to keep in the front of my mind that it is only the disease but sometimes that is almost impossible. When things have overwhelmed me, I have taken breaks of a week or so from visiting. Having a legitimate excuse not to visit such as illness is so much easier for me to deal with rather than just not being able to face up to her.

    We all do the best we can and that is different for all of us. Yes, I'm a little shamed by other carers I see, for their many visits & all they do, because I don't do that. But I try hard to do the best I can. It's all anyone can ask from us. Especially ourselves, as we are always harder on ourselves than others are.

    Do as much as you comfortably can, find your balance.

  20. Margarita

    Margarita Registered User

    Feb 17, 2006
    #20 Margarita, Sep 15, 2007
    Last edited: Sep 15, 2007
    I'll never forget when my mother did that on the bus when she could not find her bus pass , few weeks after my father died she tip the entire contents on the floor bus , also few years back from that time when we went to a holiday camp she could not find her purse to pay taxi man so tipped the whole contents on to the pavement .

    my mother was the one who would love to talk , but then all of a sudden she stop like you I found conversation with my mother so hard going it was horrible freak me out really , she just sit they not talk just looking around . me thinking is she winding me up , all this happening before I new mum had AZ , when she moved to Gibraltar the deteriorated got worse . she got lost in a country she new all her life , she had taken my daughter to gibraltar only a few year back on her own , while my dad stayed in england.

    Then when mum was put on medication for AZ she was back to taking to me and I learn that change does unsettle her . like Joanne says
    oh about care home when you say they smell of paint , I would prefer that then a care home smelling of urine .

    I would say if you moved you mother now she may deteriorate move , unless she on medication for AZ as that may help her with any move as I know my mother when on medication exbixa it help her with all the changes moves we had since I have been caring for her .

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