Does visiting ever get any easier?

Discussion in 'I care for a person with dementia' started by Rosalind297, Dec 4, 2019 at 10:04 AM.

  1. Rosalind297

    Rosalind297 Registered User

    Oct 14, 2017
    Mum went into residential respite two weeks ago today. We have just rolled it over for two more weeks although I have a strong feeling that she may be there permanently now.

    I will never forget the abject panic on her face when she realised what was happening and we have been advised that she has become incontinent since she’s been in there. Her cognitive abilities have definitely decreased in the two weeks.

    On the other hand, she looks clean and well turned out when we visit and I have spied her chatting to some other residents, about what Heaven only knows as she doesn’t make a lot of sense much of the time. She sundowns quite badly at this time of the year which results in quite bad anxiety attacks and she couldn’t bear to be alone even for a few minutes when she was at home.

    So it’s swings and roundabouts when considering whether she should stay or not. Also, within the family, we have a few who would like her home and others who feel that that would be impossible now. It is all very difficult.

    Each of us have visited about twice a week each, usually for less than an hour each time. We see or phone or text each other when we’ve been to report back on how she seemed and any news on her condition from the CH. I think it is safe to say that we are all feeling dreadful about this, even those who think she is in the right place. It would seem from all of this feedback, that I am the only one who gets the “when are you taking me home?” type questions. They aren’t accusatory or desperate, just assumptions that that is why I am there - to take her home. Presumably it is because I was principal carer and did everything to make her as happy as she could be in the circumstances.

    I am due to go today, for about 45 minutes before her lunch. I am dreading it for the following reasons: she is always SO happy to see me, unlike the others who she often doesn’t really recognise, and I feel sick with guilt for what we have done; 45 minutes isn’t enough but we are encouraged by the CH not to overdo it so as not to unsettle her; I cannot bear the look of disappointment on her face when I fudge whether she is going home or not; I don’t think I will ever get used to not saying bye-bye & just sneaking back to the lift leaving her confused as to where I’ve gone and, most of all, the whole thing just reinforces how much I miss her.

    Please, someone, tell me that it does get easier.
  2. Pete1

    Pete1 Registered User

    Jul 16, 2019
    Hi @Rosalind297, sorry to hear about your situation. You and your family are clearly looking after Mum's best interests. If she sundowns quite badly then being at home on her own probably wouldn't be in her best interests. On reflection I kept Mum living 'independently' for too long, as it was what she wanted in her pre-dementia state, she was better cared for and reassured when she sundowned, and daily her recognition of her own home became less and less - the thoughts of home were her childhood home. It is possible that the 'home' your Mum is hankering for isn't her current property. When Mum went into residential care I used to say to Mum you are staying here for a while and they are looking after you, and she would comment that she was being well looked after. As the dementia continued its journey the thoughts of going 'home' left her too and it wasn't mentioned again. It sounds as though you have a good family network than can arrange to visit Mum quite regularly in the care home and that will help provide her with the reassurance. If the stay becomes permanent you can personalise the room which can also help. I totally understand the feelings of guilt, we all have those I think but you are doing the best for your Mum. Stay strong. All the best.
  3. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    I'll tell you that it does get easier at least from my experience @Rosalind297 . My wife has been in her care home for 6 months. I used to dread going to see her and being subjected to pleas to take her home. She still says that sometimes, but I have realised that it is a different 'home', one that is lost in time and can never come back. She sometimes greets me cheerily, sometimes aggressively and sometimes as if I am a complete stranger. But I have got used to that. Like you I have noticed that she is kept clean and as smartly dressed as the staff can manage (she still resists personal care). I have seen how much the staff have formed a bond with her and genuinely care for her as a person.

    I still hate the fact that I could no longer manage to look after her but my visits have become easier since I realised that she has a better life in so many ways than when I was struggling with her at home. In the last few weeks I have glimpsed in my wife something like an acceptance of the fact that the care home is now where she lives. That above all else has made my visits easier.

    It doesn't happen overnight but I hope what I have described helps you.
  4. Champers

    Champers Registered User

    Jan 3, 2019
    My mother has been in her CH for coming up to 8 weeks now and this sounds exactly like her. As soon as I walk in, she’s starts on and on about going home, even though, just like Pete1, I think I kept her living independently too long as well - almost to the point of no return as she was even worse than I thought and had clearly been unable to look after herself for some time.

    Someone on here gave me a brilliant suggestion, as Mother was impossible to distract from the “going home” thing, I now just say firmly to her, “No. I’m not here to talk about that. I’m here to see you.” So far, it seems to be working. It’s a bit repetitive as she will forget and start again, but it helps break the loop.

    Good idea to visit just before lunch too. Because, no matter how much you care, the endless questioning can be exhausting and the distraction of a meal definitely helps.
  5. Sirena

    Sirena Registered User

    Feb 27, 2018
    I wasn't my mother's principle carer so I didn't get the 'take me home requests' (she lived at home on her own, with daily carers). She did seem additionally confused the first couple of weeks at the CH, which was inevitable as it was an unfamiliar environment and she had to get used to the carers and the routines. After the first week I only visited about once a fortnight to allow her to settle in - and she did. After about two months she greeted me with the words "I love it here!" She's now been there nearly two years and it really is her home, she loves the constant company and the fact there is always someone on hand to help her.

    I used to really dislike the whole care home setting and found it very difficult to visit, but I got used to that and it sort of washes over me now. I think us relatives have to become used to the idea and the practicalities of visiting, just as much as your mum has to get used to living there. I am sure she will settle, and I suspect she isn't too unhappy there, except when she sees you and it triggers the idea of going home. In time the CH will hopefully become the 'new normal' for you both.
  6. TNJJ

    TNJJ Registered User

    May 7, 2019
    Hi.My dad has been in respite for four weeks but was originally 2. He never asks to go home but never asks to stay either..
    He is “high functioning “.
    I set myself a limit of 2hours but only go once a week.I was dads principle carer until I got them in more frequently.

    I find it does get easier. The relief of him having someone around 24hours is great.(He didn’t have that at home. He was on his own for 15 hours overnight.)

    The worry has gone and that is something.
    He will end up in a home eventually as it is unsustainable at his home. But he has”capacity “. All I can say is “one day at a time”..((Hugs))
  7. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Hi Rosalind297 I just want to say one thing about your mother's decreased cognitive abilities. I think it's not so much a rapid decline as it is the disease cruelly showing up the inability of the person to learn new things. Things as simple as where the toilet is. When in an environment they have been in for years, they cam usually bumble through more or less. But in a new place, they are all at sea. So while it appears they have declined rapidly, it really isn't so.

    Yes, it does get easier with time. It's only been two weeks for you so that's no time at all. We forget that the family has to settle in to the changes as much as our loved ones do. My mother packed all her belongings every day for at least the first two months. I was visiting every day and unpacking. Eventually over time, I gradually cut my visits down till after 15 years I was going once or twice a week. I did take breathers, breaks of a week or two when my mother was being particularly horrid.
  8. millalm

    millalm Registered User

    Oct 9, 2019
    There are so many things in your post I could speak to but I will try to just answer your question... does it get easier? Your title refers to visiting her, but I think you are also asking if the situation gets easier. The situation does get easier in the sense that you can rationalize that they are in a place where there is someone there at all times, so the stress of worrying about leaving them alone changes to are they as well looked after, and are they as happy as they were when I was their carer. Once you have made the decision to make a care home permanent the stress of having to make the choice will also be gone, and you can use your energy to make her room look and feel like home. You will be able to have visits that become time with Mum and figure out a schedule that works for you and your Mum, and hopefully an exit plan that does not involve sneaking away. As difficult as it is, savor the fact that she still knows you, and is happy to see you. It is very common for PWD to continue to ask to go home, it never gets easier to hear but you will figure out responses that work for you. My Mum rarely speaks but when she does it is often to say she wants to go home. I have learned to give her a big hug and say but you're home with me right here. Advice you didn't ask for... since you are her primary carer you will have to be the one to decide on permanent placement, and you need to ask not just what's best for your Mum, but what's best for you. It is easy for those who are not responsible for the daily care to have an opinion but unless they are willing to take on an equal share of the care giving their opinions should not influence the decision.

    I see my Mum every day , she has been in a home for 2 years 9 months, and I miss her every day so I know exactly how you are feeling.

    p.s. You mentioned that your Mum has become doubly incontinent since she has been in the home, it may be just because she is unfamiliar with the setting and the routine. I would ask them to put her on a toileting schedule so she does not have to go through the process of being changed by 'strangers'.
  9. Rosalind297

    Rosalind297 Registered User

    Oct 14, 2017
    Thank you very much for your messages @Pete1 @northumbrian_k @Champers @Sirena @TNJJ @Canadian Joanne and @millalm

    There is a lot of wisdom in your messages and the similarities in your experiences gives me
    some hope for the future.

    We had no mention of going home today. She had had her hair done, not that she could remember anything about it but was on her own, without her hearing aids for some reason and repeatedly said that she missed us all and didn’t see any one much any more. I was this > < close to getting her things and bringing her back home at that point (she lives next door to me). I didn’t of course.

    I think your point about apparent decrease in cognitive ability @Canadian Joanne is absolutely spot on but something I’d not thought about in that way before.

    Also the point about making a new routine is also very clear to me now. It IS early days and we have gone by the guidance of the CH to only see her occasionally and briefly but it hit me when I was with her today that this just isn’t enough for either of us. She misses us and I, for one, miss her so I am going to try to work up a regime of staying a bit longer and finding things to do with her which we’d both enjoy when it is my turn to go. That way I can say to myself that she is being physically cared for better than I could manage and she has someone there whenever she needs them particularly to deal with the sundowning - the infrastructural things if you like - but I can still have quality time with her that makes me feel less like I’ve abandoned her. I know this sounds obvious to everyone else but that simple alternative way of looking at things has only just clicked in.

    In many ways I think we have probably been quite lucky. The settling in period isn’t over yet by any means but she has always been quite compliant and I hope that if this does become permanent (my big brother is pretty adamant), we get the best of both worlds. Doesn’t actually make me feel like I’ve been punched in the stomach any less at the moment but early days ...
  10. leslyz

    leslyz Registered User

    Oct 24, 2015
    Hi @Rosalind297, I really relate to what you have written, it is indeed painful. You have had some great responses on this forum which I have also found helpful. I was particularly struck by the concept of us as relatives also needing to come to terms with the changes and learn an alternative way of doing things. I don't really know the answer to your question though in some ways things are a bit easier 8 months down the line for me and mum. Mum is much more settled but I still find it painful when she talks about going home and arguing and being distressed. We started with this place as respite due to her having fallen and fractured her pelvis in Feb, but since September it's become clear that the hip isn't going to improve and she is definitely not safe to go home. All this time I've been questioning other possibilities even looking at other homes as there were a few issues where she is but now I'm unsure about moving her and worry that it could make her worse. I waver between thinking I should move her somewhere better and keeping her where she is with all its faults because by now it has at least become familiar and the carers seem kind enough overall. Maybe this place is good enough though not perfect. I think the hard part for us as relatives is letting go. I'm now considering how often to visit as find it upsetting even when she's in an apparently happy state of mind. I live 100 miles away and it's a long tiring process but I still want the contact and to check all us we. I guess some of this is as much about me needing to ket go and trust. It is a process but not easy. Hopefully you will find things settle down soon enough and take comfort from the wise comments from earlier posters. it sounds like you are the one taking the brunt of all this within your family and whilst I don't have that due to being the only one, I can imagine it is hard getting the balance. Take care of yourself I know this to be so important. I'm glad you posted as you sharing has helped me too, just knowing these feeling are normal though painful.

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