Residential Care and coming to terms

Discussion in 'ARCHIVE FORUM: Support discussions' started by Ruby, Jun 28, 2008.

  1. Ruby

    Ruby Registered User

    Oct 25, 2005
    Logging into TP today, I realise it’s nearly three years since I joined.

    I’ve been reflecting today on these past three years because yesterday my mum moved into respite care with a view to permanency. It feels like the worst 24 hours of my life. But I’ll get to that in a second because I wanted to go over a little of what we’ve experienced in these last few years. (But feel free to jump down to my last paragraph which is the essence of what I’m saying.)

    When I updated my profile today, I took it from ‘my mum is 64 and about to be diagnosed’ to that she is 67 and has Alzheimer’s. These three years have been with filled upheaval and change but also a healing of the relationship between my mum and me. My very first post on TP mentioned the difficulties she and I always had. But with the acceptance of my carer role, I have mellowed towards her. I have also become the planner of my mother’s life, the trouble-shooter and peacemaker.

    Mum has been involved in a dementia day program with an art emphasis over the last 18 months which seen a development of a creative spirit. That, I have to say, has been the truly wonderful things to happen over these years.

    Mum has had daily carers looking after her these last few months, morning and evening. Between us, we have structured mum’s day but, living alone, she still has to contend with the nights and the times by herself. I guess she has been experiencing sundowning because she is very tired in the late afternoons and becomes tearful. Invariably she rings me to fix whatever is wrong and invariably it’s something that we are no longer able to work through over the phone so I drive over and we work it out. She will tell me that she hates living alone, although she never used to (as she’s been widowed for 37 years and I was the last child to leave home). She says she is ready to move and asks what plans we are making. My sister and I are investigating and applying to care facilities.

    Suddenly out of the blue last week, we have a call that a low care bed is available in a prime establishment, coincidentally where mum’s mother had lived 20 years ago. It looks very different now with lots of modernisation but still has happy memories for mum. The visit goes well as does our arrival on moving day. The head of low care leaves with my sister and I return to mum to find her in tears because of the behaviour of another resident. Immediately mum wants to go home. I knew it would be hard and I would be distressed. Mum had been very stoic until then but now is distraught. I stay with her for a while and leave feeling completely wrecked.

    This morning I ring to ask the carers about mum. She has settled and is doing well. My husband and I visit this afternoon and have a very relaxed time. We sit outside in the beautiful garden and mum chats about the lovely facilities and what the care workers have done for her. I have brought some pastels and pencils and mum and I draw. My husband reads the paper and tells us amusing things he reads. We leave after afternoon tea and mum is settled to watch tv in her room.

    About an hour later I have a phone call at home from a care worker saying mum wants to speak to me. Mum had a phone in her room but thankfully can’t auto dial my number because I know the calls would be far more frequent than they were when she was at home. I speak to mum. She is distraught. She can’t find her clothes. She is wearing pyjamas because all her trousers are in the wash. I haven’t brought all her clothes to her yet. She wants to come home, she says repeatedly.

    We talk about the stay being respite so that she can have rest and support. We talk about her hating living at home alone and wanting to move. I’m surprisingly calm. I think I’ve cried out everything from the last 24 hours. We have gone from a very relaxed afternoon visit to a distressing phone call at 4.30pm, the beginning of the witching hour for mum. I’m glad mum has a telephone so that she doesn’t feel we’ve taken everything away. I’m equally glad she can’t ring me herself. I’ll ask the staff to distract her if she feels the need to ring me. This is only day two.

    I’m trying to regain some of my life. My husband and I are going on a 5 day holiday in two weeks’ time. We only booked it the day we accepted respite care. Regardless I was going to arrange a holiday and respite in-home care anyway. It’s been five years of managing her gradual decline. It has been three years of intensive caring for someone who possibly would be at home longer if she had a spouse. I don’t know.

    My husband says ‘don’t try to rationalist the irrational’. I didn’t think I would be this distressed and guilt-stricken. I feel wretched and fear that mum will hate me. I’m scared if take her out for the day that she’ll refuse to return to the home. After several years of fine-tuning a plan of caring, I feel like I’m back to Day 1 when she was diagnosed. It’s all unknown again. Thanks for reading my rant. It’s pretty cathartic to write it all down.
  2. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Ruby

    Thank you for your post -- not exactly a rant, more an expression of your feelings!:)

    And I have to say your feelings are pretty normal! Having recently had to have my husband admitted to care, I know all about the feelings of guilt, inadequacy, and sheer misery.

    I honestly don't think you'd be feeling any different if it was a spouse, and I don't think that would have delayed the admission by very much.

    You have done a wonderful job caring for your mum for so long, but for most of us the time comes when it is no linger possible, because more care is needed than we can provide.

    I'm not going to say get rid of the guilt feelings, that will take time.

    And it will also take time for your mum to settle. She wanted to go into the care home, and likes it. But it's all strange to her, she's having to get to know new people, and new surroundings, and she's feeling very insecure. Remember your first day at 'big school'? How much you'd looked forward to it, and how scared you were when the day actually came?

    Give her time, Ruby. She will settle, and may be making new friends at the moment. Perhaps don't take her out until she settles down -- ask the staff about when she is ready.

    And look forward to your holiday -- you deserve it.

  3. jude1950

    jude1950 Registered User

    Mar 23, 2006
    Dear Ruby,

    It is very traumatic when a loved one goes into care wether it is a spouse or partner or parent or other family member.

    When my Husband first went into care it was awful and I nearly brought him home on more than one occasion, I am now certain I did the best thing for the both of us.

    I hope your Mum settles soon ...I would avoid taking her out on trips just until she is more settled.. enjoy your holiday safe in the knowledge that your Mum is being cared for.


  4. Roma

    Roma Registered User

    Jan 15, 2008
    Hi Ruby

    I'm going through the same thing with my mam. She went into full time care last Thursday. She was looking forward to it and was okay about going in.

    I visited her on the Friday and still she was fine. I went on the Monday and even took her out for lunch and a drive and she happily went back to the home. Different story when I went to see her on the Thursday. She was crying and saying she wanted to go home over and over. In the end I just had to say that I couldn't sort anything out today but I'd sort something out soon. In effect I just lied to her, which I hated.

    I went in the next day and one of the carers said it took an age for them to get her settled that evening. She was in tears and wanted them to ring me as she thought that I probably wouldn't go back to see her ever again. She was fine and cheerful that morning right up till the point I was going and she asked me if she had to stay there until she died. It's so hard to reply to that. Thankfully it was lunch time so the carers managed to distract her by taking her into the dining room for lunch. I was hoping to take her out for lunch on Monday but as you've already said yourself, what if she refuses to go back :eek:

    I had been so relieved in the beginning to think that she'd settled in well, but I suppose I was expecting too much.

    As everyone on TP will tell you Ruby it's a whole new set of problems when your loved one goes into care. But at the same time at least you can rest easy to some extent by thinking that she's in a safe environment and being looked after. My mam was starting to wander in her nightdress at all hours so I knew the time was right for her to go into a care home.

    Everything you are doing is in her best interests, even though she won't see it that way, but as your husband said "Don't try to rationalise the irrational". Pretty good advice if you ask me. I must try and remember that myself.

    Take care

    Roma x
  5. Ruby

    Ruby Registered User

    Oct 25, 2005
    Day by Day

    Thanks Hazel: It's funny that you mention 'big school' because my husband uses the analogy of boarding school. He knows that kids ring home, and write, begging to be brought home. It's exactly like that.

    I know in my heart of hearts that it's the best place, the carers are trained and responsive, there's nurses on 24 hours, every service that opens and closes, etc.

    I've just have to work through the guilt. I know it will take time; I'm just glad that I'm not alone!!

    Thank you Judith: I'm so glad that I'm not the only one who wanted to bring their loved one home immediately! That's all I could think of the first night. The carers all say she will settle.

    Roma: Thank you so much for your reply. I feel a real connection with your post because you share my mum's name! Also our connection is our mums entering care is so recent. I think my expectations were unrealistic even though I was trying to be so realistic!!

    It does help so much to share these thoughts with an empaethic community and with similar experiences.

    Thanks every one!

    (Saying to self: Day by day!)
  6. Roma

    Roma Registered User

    Jan 15, 2008
    Hi Ruby

    Glad to hear that our words have been of some comfort to you. I know that I've found it really helpful to offload on TP and the advice I get back is always helpful.

    You mention that my name is the same as your mum's. Roma isn't my real name, that's just my TP name. I love Rome and I just used the Italian word for it. Is that your mum's first name or surname?

    I know that everyone is at a different stage with their loved ones with regard to the illness but it's always good to hear from someone who is going through the same stage as me at this time.

    I'm also going on holiday next weekend so like you I'm just hoping to be able to relax and not fret too much about how she is. As you say you have to take things day by day, because that's all anyone can do in life in general.

    Keep in touch.

    Roma x
  7. Ruby

    Ruby Registered User

    Oct 25, 2005
    Roma, have a lovely time on your holiday too!

    Roma is mum's first name. Don't worry, Ruby's my TP name too. I'd love to have a little girl called Ruby some day! Just Roma is a funny coincidence.

    Here's to holidays!

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