Looking like permanent care for mum(feeling sad)

Discussion in 'Middle - later stages of dementia' started by Anniebell, Jul 25, 2015.

  1. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    Hi everyone not been here for a while mums got worse rapid response on board since April, initially for 8 weeks still with her as they couldn't her discharge her I ended up on what i call happy pills as i went into melt down in may !!!!
    On the 7th of July got a call from cpn she arrived at mums and her neighbour was bringing her back for the third time that morning cpn had to stay with mum untill i got there ( i was in work) when i arrived mum was sat on front step cpn sat on stairs she couldnt keep her in the house phoned social worker ( who i might add wasn't very helpful at first when i said i had a problem with mum she said "i'm busy:mad: !!!!! ) i asked for emergency respite she first told me how much it would be and then said when do you want it tomorrow or the day after id already told her i couldn't get mum in the house !! I WANT IT NOW ok she says i'll do the paper work you book her in !
    Mums been there ever since having a meeting on Tuesday looks like Mums not going to be coming home I feel like iv'e let mum down and when dad was ill before he died i told him i would look after her i can't stop crying i know its for the best and Mum will be safe but i feel awful about the whole thing, its her birthday on Sunday and the care home have said it might be better to visit mum with the family take a cake etc as we don't want to disorientate her at the moment' we all usually go out for lunch on mums birthday feeling bad about that too sorry to go on just needed to Love Annie x
     
  2. marionq

    marionq Registered User

    Apr 24, 2013
    5,555
    Female
    Scotland
    Anniebell I feel for you. Wandering and "needing to go out" is very hard to deal with and seems to be a compulsion that you can't reason with. My husband began this seriously last Autumn and it continued to escalate throughout the winter and spring. The authorities took a strong view of it as a variety of reports landed on their desks and they have begun the process for admission to a care home where he will be safe.

    I feel torn and a sense of betrayal yet I know it cannot continue. Because he is high risk there is nothing else they can offer. The best you can do is to see she is being well looked after and be there for her. It is a cruel way to end a life.

    Keep us in touch with how she settles in. I will do the same.
     
  3. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    Hi Marionq I feel for you too its an awful feeling isn't it i hate this illness i will keep in touch with how shes doing can't help feeling that it must be worse for you ,your lovely husband keep me posted thanks for replying take care
    Love Annie x
     
  4. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    2,951
    believe it or not you are looking after your mum, as per your promise to your dad. You are making sure that she is in the best possible place and is safe and cared for, you are minimising her distress by avoiding the awful sitting on the doorstep situations, (I am only too familiar with this as my mum would refuse to come into the house or refuse to let me in) and after all, you didn't say you were too busy to go and deal with a horrible situation did you?
    All things that were "usual" are no longer usual, that doesn't mean to say they won't happen again, but that every time you have a special event you need to consider what is going to be the nicest thing for your mum, cause the least upset and feel manageable by her.
    See how your mum gets on, mine adapted surprisingly well to respite. Sadly, but inevitably I suppose, she has now deteriorated so badly that she has just gone into full time care. it's a huge change and we are all taking time to get used to it, the person it seems to benefit most is mum, who is calm and sleepy and cosy and doesn't have the struggle of being hauled about by inexperienced family.
    love to you x
     
  5. canary

    canary Registered User

    Feb 25, 2014
    9,331
    Female
    South coast
    Hello Anniebell
    Its hard isnt it? Mum was wandering too - she would go out at night during the winter, in just her nighty, getting lost and calling on the neighbours in the small hours of the morning. She is now in a CH
    Please, please do not feel guilty that your mum is in a CH. You promised to look after her and you are - you are making sure that she is safe and cared for. It takes a lot of adjustment on both sides - for you as well as your mum. Once my mum settled she was much happier and I am now able to take her out again, though she would still wander off if I didnt keep an eye on her. Mind you, as her mobility is going this is less of a problem :rolleyes: So, you see, it does improve. Its just the sudden shock of realising that she has reached that stage.

    Re the birthday.You need to gear it to what she can manage. I understand the pain of the first birthday in a CH. Mum was 90 and she and my MIL, whose birthday was only a few week before, had planned to hold a joint 90th birthday party. Once the day came along, my MIL has died, my mum was in a CH and I had to organise it. She was, at least, settled by then so that made it easier.
    Does the CH have a separate room that you could borrow for her party? If so, perhaps decorate it with balloons and bannars, order a cake and perhaps have a word with the chef to see if you could arrange to have a meal for everyone, which would be like going out (this is what I did - I arranged for it well in advance and obviously had to pay for it). Failing that, organise everyone to bring in hot food (casserole, baked or roast meat/fish, veg and pudding) which the CH may be happy for you to heat up in their ovens, or a cold buffet. Keep it fairly simple and dont have too many people or go on for too long.
    If you have to keep it really low key, with perhaps just a birthday cake and champagne that is OK too. What is important is that her birthday is celebrated, family are there and she has a happy day.
     
  6. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,421
    Yorkshire
    I know I've skewed this quotation from your post Anniebell but it's to make a point:-
    You are looking after your mum, you haven't stopped and won't stop looking after her, she will just be in a different place and you will have different support - therefore you are keeping your promise and in no way, shape or form are you letting down either of your parents. Just look at the way you made sure she got the respite NOW - your dad would be so proud.
    I found a care home for dad after he wandered in the middle of the night. 2 lovely ladies took him in that night, we were so lucky. I found for me this was the 'trigger' (I had been wondering what it would be); I can't even allow myself to consider what might have happened ... He looked so frail and vulnerable and bemused when I got to him.
    And if I have any doubts that I did the right thing, I 'flash back' to the moment I got to his house, found all lights on, windows and doors open and NO DAD - wouldn't wish that on anyone. My peace of mind is important in all this; and I have relaxed so much knowing that I am not 'on call' from the moment I leave him to the moment I see him next day.
    He's safe now all day, every day and I think he 'knows' that in some way, as his sleep is not disturbed at night (he was getting up almost every 2 hours) he doesn't pee in odd places in his room any more, he doesn't move his furniture around in the night and he doesn't go round checking all the doors (which is what I think led to him taking off - just checking front door, what was outside ...) AND if he starts any of this, there is someone on hand to help him back to sleep (without their own sleep being affected).
    It hasn't been easy passing over some of the care to 'strangers' - but I am getting to know the carers and they are getting to know dad. One lovely lass said to me that in many ways she knows the residents better than her own grandparents as she spends so much time with them and learns so much about each one so they become like extra grandparents to her. Conversations such as that settle my mind.

    So I hope all turns out well for you and your mum - and marionq, for you and your husband.
    And I hope you do find a way to celebrate her birthday - my guess is the home will have some helpful ideas.
     
  7. Worrywart 2

    Worrywart 2 Registered User

    Jul 7, 2015
    39
    I'm in the same boat Annabel and like you feel awful and so sad. My mother had brain haemorhage 3 yrs ago and now has vascular dementia. She has lived at home with carers and lots of help from me and my sister. - 2 months ago she started wanting to go out and no amount of reasoning would stop her, she would also pack all her belongings, hoard things in carrier bags, and believe she was the mother of young children, refuse to refund to the house and stand in the street blah blah. It became very difficult to manage and she is now in hospital 60 miles away ( no beds locally ). She is now on mamantine and seems more settled. A psychiatrist has done an assessment and feels she needs a care home setting as opposed to residential. We had a DST yesterday and it looks like she will not qualify for CHC but may qualify for the nursing element. We looked at one nursing home locally yesterday and it was horrific - my mother is only 76 - we popped in to find lots of much older residents sat around looking sad and bored. I hate it so much and like you Annabel feel lost . There is a residential home in our village which takes EMI dementia patients but because of the need for some nursing overview this is no longer possible. It's a nightmare and I completely sympathise Annabel.x also now have to look at selling her house to fund this nightmare that no one wants.
     
  8. mcmidlothian

    mcmidlothian Registered User

    Feb 11, 2015
    5
    feeling of guilt

    Hi Anni
    I am going through the same with my husband and I know the overwhelming sense of guilt is dreadful, but this is normal, I have never known any caring person who does not feel this.Your heart tells you one thing but your head tells you , for her own safety she needs 27/7 care.
     
  9. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    I promised too

    Hello Friend,

    When my Dad was dying of cancer he also got me to promise that I would take care of my Mum. After 3 months in hospital she went into full time care. She was nor eating, drinking, getting washed or changing clothes. She was in bed so much she was losing the power of her legs. She was so dehydrated that she fell over every time she stood up. She stopped drinking so she would not have to go to the toilet:eek: She spent all night on the floor twice confused and in her own waste. Carers x3 times a day did not help. She kept telling me she wanted to die.

    Fast forward 3 months later. She is clean, eating, drinking, getting all her medication at the right time, up and dressed every day, talking to other residents, going out with carers. She is happier and healthier than she has been in years.

    Did I feel guilty - Yes! No I see her I don't any more. Which situation was better? Im sure my Dad would agree that she is now better cared for. Sometimes, staying home is not the best option.

    I hope you get a happy resolution for your Mum. Your Dad would want her safe.
    Love Quilty
     
  10. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    Thank you for your reply we had the meeting yesterday and shes going to be staying in the CH a huge change like you say. Mum will be safe and i will be able to sleep at night although didnt have a great night last night too many things running through my head !!! but know its the best thing all round calm sleepy and cosy :) Take Care
    Love Annie x
     
  11. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    Hi Canary Mums staying in the CH i know the guilt monster will come a calling and didnt sleep great last night but i know its for the best glad your Mum had a a lovely party sad that your mil passed away we kept mums low key not enough time really to arrange anything else the care home made tea time into a party family there and all residents that could join in did mum got a bit tearful when the lights went down and the staff brought her cake but that quickly passed when she tucked into it :) It's early days and will take time to adjust but we all get there in the end dont we ? thanks for taking the time to reply Take Care
    Love Annie x
     
  12. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    Thank you for sharing your experience with me it made me feel a whole lot better friends mean well but if they havn't had this awful disease barge into their lives they don't really know or understand it and just say what they think they should mums staying in the home it will take time to adjust and it will be strange not having to juggle my life mum work mum family mum mum mum !
    The carers sound lovely in your dads care home and i'm happy that you are settled and have peace of mind and hoping when the guilt monster lets go i will feel the same Take Care
    Love Annie x
     
  13. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    Oh Worrywort how awful for you and your Mum ,your Mum could be my Mum packing hoarding looking for the kids i think the kids are me and my brother as she thinks we are her sister and brother now
    We had the meeting yesterday and Mum is staying in the home its lovely Mum had been in twice before for respite and the staff know her so i don't have the worry of finding a suitable one, doesn't make it any easier to deal with guilt eating away at me but like everyone says its for the best .The best for mum and thats who matters in all this i hope that you get things sorted and you can find a nice home for your lovely Mum keep me posted on how things are going This illness that i hate with all my heart takes everything like you have to sort Mums home now our family home i know i'm going to come across things from childhood and its going to break my heart
    Love Annie take Care and keep in touch x
     
  14. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    Thank you for your reply Mums staying in the CH and a part of me yesterday thought i can do this i can bring her to live with us i just need a stair lift oh and an extension give up my job; your right your heart tells you this but she does need 24 hour care and its whats best for our loved ones thinking about you and your husband Take Care
    Love Annie x
     
  15. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    Hi Quilty Like you had everything i possibly could put in place to keep mum at home its not enough and i know the guilt will pass i think ive focused on what i said to Dad its nearly 2 years since he died and your right he would want Mum to be safe i was running on empty in may and no use to anyone this is the best option for Mum will just take some getting used to thanks for your reassuring words Take Care
    Love Annie x
     
  16. canary

    canary Registered User

    Feb 25, 2014
    9,331
    Female
    South coast
    It sounds like your mum had a happy birthday and thats whats important :)
     
  17. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,421
    Yorkshire
    It is good to read that you celebrated your mum's birthday, Anniebell. That gave you all a loving start there. I think it says a lot for the home that they did that for you and that the other residents were included.
    I am putting together a reminiscence box for my dad, so keeping items from his life that may mean something to him and give us and others something to talk about. So when you are going through the house maybe set aside some smaller items to put in a suitcase or hamper or sewing box (whatever suits your mum) to create a memory box for her. These are not precious items, exactly, as they may go astray and they are intended to be handled. Her favourite book and knickknack, a recipe book with pictures, an old toy, CDs of her favourite music (so important for dad, really helps to keep his anxiety at bay), a tablecloth she embroidered, some tool she used in her hobby, some packaging for familiar household items from a while ago, some things that have a memorable scent - you'll probably find that when you are sorting the appropriate objects will be obvious.
    I mention this now as dad had already sorted through things after mum died and must have continued over the years as I haven't found some things I expected to uncover - and I know that I gave some bits to charity a while ago before I knew about this memories box idea, and I'm kicking myself now - though hopefully someone else is enjoying them.
    It's a bitter-sweet thing to do, and doesn't have to be done immediately, give yourself time - but I wanted to mention it as it really works. I found a music book of dad's from my childhood with music, lyrics and illustrations - he used to strum a guitar and sing along - I recognised some of the songs and so knew the tunes. When I showed it to him he really looked through it and recognised a tune I tried to sing (I'm very self conscious so had to brace myself to sing aloud even for him) and he joined in! And then sang others. It was magic!
    And thinking I may find some other things to add to his box is making the clearing out a bit easier.
    Be kind to yourself over the next few weeks; it takes time to adjust.
     

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