Visiting mum in care

Discussion in 'Middle - later stages of dementia' started by Kaz666, Jul 5, 2015.

  1. Kaz666

    Kaz666 Registered User

    Jul 5, 2015
    2
    My 83 year old mum has Vascular dementia and has been in care 5 months. When I or any member of my family visit, she immediately starts crying and asking where have we been, and that we dodge her as much as we can. (One of us visits usually daily) she asks to be taken home- to her parents home, and recently has started telling me she hates me and wants to kill herself because we don't care. We try distractions & changing the subject but she will not move from her tears and suicide talk until we actually walk out the door, when she takes up cheerful conversation with the care staff. We are told that outside of our visits she is very cheerful and chatty. She knows who we are and loves having friends visit, but changes immediately on her families arrival. She is at her worst with my dad who has cancer, and cannot cope with her. Are we visiting too much? Why cant we get beyond this tears that are reserved for Dad, me & my sister? Do we keep going until she doesn't know who we are? I dread visiting now but feel guilty if I don't go for a few days. No one says anything but visit as often as you want. I feel damned if I do and damned if I don't :(
     
  2. theunknown

    theunknown Registered User

    Apr 17, 2015
    326
    Kaz, how I empathise with you. My mum went from a mental health ward to a care home early in February. Your situation sounds very similar to mine. My way of coping has been switching from 'that' mum to 'this' one. To me, she's the mum I've always had, but she doesn't have that relationship to me (or other family members) that she used to have. I've accepted that this is in no way personal and, in fact, she has been very insulting to my twin sister, but with me she just seems to worry about people doing something horrible to me. When I saw her last Tuesday she told a member of staff that I'm "short and precious" (the short bit's right :)). Then, when my sister visited the next day with my niece, my mum accused my sister of stealing her trousers, told her she looked ridiculous, and said she had a 'pig face'! And then she said something about, 'standing there with your fat stomach'. I know it's easy to say it's the condition that's letting her come out with these things, but it can't be easy when they're aimed at you.
     
  3. daisydi

    daisydi Registered User

    Feb 25, 2015
    255
    Norfolk
    Hi I am in a similar situation in that our mums are the same age and have been in care for about the same amount of time with the same illness. It is heartbreaking and although my mum is not nasty to me she doesn't really speak to me and visiting her is such hard work that when I come home it makes me feel so sad. I was going in every other day but I'm cutting it down to just a couple of times a week as I find it really hard. One of her new friends is really pleased to see me and chats all the time to me and my mum just sits there and doesnt say a word. She even leaves the room and I end up sitting chatting with the other lady and my mum doesnt want to know. I am told she is happy and content but it is hard to believe when she behaves like this. I make such an effort for her but I just cannot seem to reach her. I put music on and sing songs that I dont know the words to just to try and engage her. Everyone else loves it but from her there is nothing but dirty looks. I cant give up on her but it is so hard so I know how you feel. My dad died 26 years ago. He would never have coped with her like this. My heart goes out to you and your family.
     
  4. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,619
    USA
    Hi, Kaz, and welcome to Talking Point. I'm sorry to hear about your mother. I hope you find some advice, support, and relief here (I know I've gotten plenty of all three in the short time I've been here).

    I hear that this is a difficult situation with your mum and that you feel stuck between a rock and a hard place. My only suggestions are ones you have probably heard already: don't visit as often, don't visit as long, don't beat yourself up about not visiting (MUCH easier said than done), and do keep in touch with the care home staff to find out how your mum is when you aren't there.

    Honestly, I would cut the family visits down to no more than once a week, and would also consider having family not visit at all for a couple of weeks and see how that goes.

    I am also going to tell you that YOU ARE NOT DOING ANYTHING WRONG. You are not a bad person. You are not the cause of this behaviour, even if your visits are a trigger for it. Dementia is the enemy, not you.

    Like others, I've been in a similar situation and do empathize with you. I also know that it's hard to visit (it's unpleasant, you worry about it before you go, sometimes all day, you suffer afterwards) and it's hard not to visit (you feel like a bad daughter, you feel like people are going to think you're a bad person, you want your mum to have visits and company). You can't fix the dementia or your mother. What you can do is to decide what will be less stressful and better for you: visit, or don't visit.

    If you do visit, keep your visits shorter. Continue to try distractions. You might have a read about compassionate communication; I'm not saying it will help, but it might not hurt. Consider bribes: at first, when my mother was very unhappy about being in the care home, a biscuit or some ice cream always worked as a distraction and we could often change the tenor of the conversation this way. Others have reported success with playing music, watching a show or movie, looking at photos, going for a walk, and so forth. When you can't stand it, excuse yourself to go to the toilet, even if you don't have to go (you get to lock yourself in a nice quiet room for a few minutes). My mother can't remember that I just went so I do this as often as needed and take a few deep breaths and sometimes text a friend for support. When you really can't stand it, and you've made a good faith effort to visit, end the visit. You can even say, if she's crying or yelling or upset, Mum, I can see you're upset and not up for having visitors right now. I'll come back another time and maybe you'll be feeling better.

    But at the end of the day, listen to your gut instinct, and if you need to not visit for a day, or a week, or a month, or a year, or forever, then don't go. Be kind to yourself and take care.
     
  5. pepper

    pepper Registered User

    Jan 16, 2011
    1
    southport merseyside
    Don't beat yourself up

    [=Amy in the US;1131827]Hi, Kaz, and welcome to Talking Point. I'm sorry to hear about your mother. I hope you find some advice, support, and relief here (I know I've gotten plenty of all three in the short time I've been here).

    I hear that this is a difficult situation with your mum and that you feel stuck between a rock and a hard place. My only suggestions are ones you have probably heard already: don't visit as often, don't visit as long, don't beat yourself up about not visiting (MUCH easier said than done), and do keep in touch with the care home staff to find out how your mum is when you aren't there.

    Honestly, I would cut the family visits down to no more than once a week, and would also consider having family not visit at all for a couple of weeks and see how that goes.

    I am also going to tell you that YOU ARE NOT DOING ANYTHING WRONG. You are not a bad person. You are not the cause of this behaviour, even if your visits are a trigger for it. Dementia is the enemy, not you.

    Like others, I've been in a similar situation and do empathize with you. I also know that it's hard to visit (it's unpleasant, you worry about it before you go, sometimes all day, you suffer afterwards) and it's hard not to visit (you feel like a bad daughter, you feel like people are going to think you're a bad person, you want your mum to have visits and company). You can't fix the dementia or your mother. What you can do is to decide what will be less stressful and better for you: visit, or don't visit.

    If you do visit, keep your visits shorter. Continue to try distractions. You might have a read about compassionate communication; I'm not saying it will help, but it might not hurt. Consider bribes: at first, when my mother was very unhappy about being in the care home, a biscuit or some ice cream always worked as a distraction and we could often change the tenor of the conversation this way. Others have reported success with playing music, watching a show or movie, looking at photos, going for a walk, and so forth. When you can't stand it, excuse yourself to go to the toilet, even if you don't have to go (you get to lock yourself in a nice quiet room for a few minutes). My mother can't remember that I just went so I do this as often as needed and take a few deep breaths and sometimes text a friend for support. When you really can't stand it, and you've made a good faith effort to visit, end the visit. You can even say, if she's crying or yelling or upset, Mum, I can see you're upset and not up for having visitors right now. I'll come back another time and maybe you'll be feeling better.

    But at the end of the day, listen to your gut instinct, and if you need to not visit for a day, or a week, or a month, or a year, or forever, then don't go. Be kind to yourself and take care.[/QUOTE]
    Amy you are an angel , you have made me feel so much better.
    My husband has been in NH for 18 months and I'm exhausted mentally and physically
    I have reduced visits from 7 days to 5 but feel I need more time away.
    I've managed to book holiday this month 7whole days !! I know il feel guilty but there is no way I can continue without a break . In fact I feel as if I have been punishing myself. Keep up with the advice , you're brilliant
     
  6. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,619
    USA
    Pepper, welcome to Talking Point. I hope you are able to find some good advice and support on here. I'm afraid I'm neither brilliant, nor an angel, but it's good to hear that you found something I said useful.

    Good for you for booking a holiday for yourself, and please be sure that you go on it. The guilt monster attacks us all at one time or another, so watch out for it and make sure you don't leave any room in your luggage for it to stow away on your holiday!

    My mum went into a care home in February, after a couple weeks in hospital. At a friend's urging, I went away for a girls' weekend in April. I felt so strange, leaving town, although I knew my mum was safe in the care home (safer than she's been for the past several years living on her own, in fact). I knew she was safe, I knew she would never even know I was gone, I knew my husband would go and visit her and take care of any issues that came up, I knew I was only a phone call away...and it was still such an odd feeling. My husband and I took a proper holiday in May and it was the same way, only worse, because we were both out of town and farther away and for longer.

    So I don't think there's anything unusual with feeling guilty or upset about taking a holiday. I do think that feeling guilty isn't going to help you. You admit that you need the break, and of course you do. You should remember that you deserve the right to your own life and you cannot and should not destroy yourself. Dementia is a terrible disease and will destroy, not just our loved ones, but our lives, too, if we allow it.

    By the way, this is all advice I've picked up here on TP. So thanks to all the angels here on Talking Point!

    Pepper, please hang in there, have a brilliant holiday, get some rest, take care of yourself, and thank you for your kind comments. It has brightened my day considerably.

    Kaz, apologies for the deviation from your original thread, and how are you doing today?
     
  7. mrbeamer

    mrbeamer Registered User

    Feb 4, 2015
    7
    Same for me

    Kaz, my mother who is 92 and has been in a care home for 7 months now, For the first 5 minutes when I visit taking her chocs and ice cream, she is fine but then she starts with the same old questions, have i seen her mother, her father, her sister ? Before, I told her they were dead which they are, she did not believe me and that started a round of her being aggressive, tears, being nasty with me. Now when she asks have I seen them, I just say NO and that seems to put a stop to it for 5 minutes and then the same questions start again. The staff at the care home are superb including the owners and they tell me that when I am not there, she is ok and whilst she has an aggressive nature, always has been, in general the staff say she is OK, it's just when I go in.

    I have now limited my visits to once a week and for shorter times as I see no point in the agony. You are not alone, it's not you, it is the nature of the illness and shortly after you have left, she would have forgotten anyway, until the next time of course.
    Whilst it is difficult to cope with, the less you have to cope with it the better for you and your well being. Just remember that whatever was said will be forgotten by her. You must not feel guilty, you are the nice person dealing with a problem that even professionals do not understand and cannot help you with, be kind to yourself
     
  8. Kaz666

    Kaz666 Registered User

    Jul 5, 2015
    2
    Thank you!!

    Can I thank all of you so much for making me feel I'm not alone, that this is common behaviour, and in such a supportive way. It answers our queries why no one else seemed to visit their relatives but us, just no one has told us not to go so much until now!! Actually, this week we asked a manager at the home for advice, and she said "as we had asked" mum is now living in her past and although she knows who we are, she cannot figure out how we fit into her life. and us going so frequently is confusing her too much, so this makes sense for Daisydi - the lady you are chatting to is fine as she doesn't have to work out how you fit into her life, you are just a friendly stranger? This all seems to explain a lot to me, whether it is correct I don't know... The awful news is that they feel mum is moving into the next phase where she will struggle to and then cease to remember us, which I have dreaded coming. So in the meantime, we have to fight the guilt and withdraw, but hearing that they have to give her a sedative after we have been, is a sobering thought. This is just the cruellest illness ever.
     
  9. mrbeamer

    mrbeamer Registered User

    Feb 4, 2015
    7
    Difficult to understand

    Over the last 7 months my mother (92) has been in a care home, It is a nice comfortable home holding about 25 people with various strains of dementia, she has a nice bedroom over looking a park and with en-suite. A bit like a seaside hotel, great staff and management who I can trust. There are two lounges both with TV's and my mother frequents the smaller lounge together with some 6-8 others. i started visiting maybe 2-3 times a week and the other residents got to know me which has created it's own problem for me as they approach me asking if I could take them home so, it's not just my mother asking the same. In this hot weather I take in a few boxes of ice cream and hand them around to those sitting in my mothers lounge area and again this has been noticed by the residents so when I walk in holding a bag, they follow me all wanting an ice cream, I feel like the "pied Piper" sometimes. It is amusing and sad at the same time as many do not have visitors and it is annoying when my mother starts getting aggressive with me for no reason. Par for the course though and now I visit only once a week and the moment my mother gets aggressive, I make my excuses and leave. If I were to stay, her aggression would get worse so what's the point ?
    There is nothing any of us can do, as this disease progresses and will not improve.

    The joke I remember is ....... A chap went back to his doctor for his test results, The doc said do you want the good news or bad news first ? he said the bad news first .. the doc said you have cancer, that's the bad news and the good news is you have Alzheimer's ??

    In other words whatever is said is forgotten and that is the story of our lives right now
     
  10. canary

    canary Registered User

    Feb 25, 2014
    10,712
    Female
    South coast
    Its not that bad Kaz and you may actually find that stage easier. Although mum no longer knows my name or remembers that i am her daughter her eyes light up when she sees me and she still remembers that I am important to her. Lots of people with dementia still remember emotions, even when they have forgotten facts.
     
  11. Pawel

    Pawel Registered User

    Jul 10, 2015
    1
    walk

    Hi Kaz, lots of things I recognise there and alot of sound advice. One thing that I've been doing more often on my visits to see my mother is borrowing one of the care home's wheelchairs, even though mum is still able to walk, and taking her for small trips for no longer than about an hour. Fortunately there's a cafe not too far away where we often stop. I do find this distracting and stimulating for mum and for me there's always plenty to talk to her about as we pass along the street. I think being away from the home environment for a while helps us both. As I've learned more about her alzheimers I've learned to be a little more assertive toward my mother and will tell her that we are going for a walk rather than ask her, but never to the point of upsetting her. I do miss my old mum incredibly but do find talking about the houses, trees and flowers, people and sky as we trundle along the street a welcome break from the kind of conversations you mentioned. Best wishes.
     

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