Tips for coping alone - when partner moves into care.

Discussion in 'I have a partner with dementia' started by Sarahdun, Aug 22, 2019.

  1. Sarahdun

    Sarahdun Registered User

    May 18, 2014
    390
    I know that a lot of us on here are in the early stages of moving our husbands/wives/partners into care homes and suddenly starting a new way of life - singly but not single - on our own at home.

    How do you cope with this change, when we are bereaved but not really, divorced but not really, suddenly freed from the demands of 24/7 care? What are your tips for survival?

    In the first few weeks I felt physically ill and was so busy with managing the change (and with work) that I was as stressed as ever. This month (our third) i have made a conscious decision to do as little as possible. The bare essentials at work. Not going on holiday, but also not doing anything I don't want to do. Just regular visits to the care home (3 full days a week including travel time). Otherwise just being still and seeing what happens - what floats to the surface. I've had phases of incredible guilt, worry (esp over money) and recently even boredom (something I never had the chance to feel before) but I have tried to just let it all wash over me. I haven't gone out and planned new activities yet (maybe in September). I have felt how very hard it is to break out of the old house/work-bound routine. I am so used to saying 'No' to things it is going to take a real effort to say 'yes'. I still feel most comfortable in my skin when visiting my husband.

    I know that others probably think we are free to enjoy ourselves - but it isn't like that at all.

    How do you manage the transition from carer-at-home to carer with partner in care?

    What do others do?
     
  2. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,760
    Salford
    I've spent nearly the last 4 years since my wife was sectioned submerged in either a bottle of wine or a bottle of vodka, I don't know what the solution is but it's not alchol.
    Sadly I see a lot of partners visit everyday because they (like me) can't move on, as long as she's there I'll be there for her, until my liver gives up.
    I don't work anymore and I've never been a "joiner" of clubs and activities other people on here are and as a man nominate WI doesn't appeal.
    The term on here is "midowhood" you're not a widow/er you're somewhere in the middle of the two, married on the one hand but single/alone on the other.
    I don't think I've ever been more socially isolated than I am now, most days the only people I speak to are the staff at the care home.
    K
     
  3. Sarahdun

    Sarahdun Registered User

    May 18, 2014
    390
    Yes, well, I only posted that because I was drinking red wine! Work (I still work part time) combined with distance (he’s an hour’s drive away) stop me visiting daily.

    Hard, hard, hard.

    Combined with the midowhood I also feel ‘ midivorced’ because I made all the decisions and he (we) has/have to live with them.
     
  4. marionq

    marionq Registered User

    Apr 24, 2013
    5,790
    Female
    Scotland
    So strange that you raise this now. I have a headache from stressing over the same thing. John has an assessment for long term care next Friday as I have reached the end of this long road. Trying to come to terms with that and also dealing with a plumbing mini crisis which is ongoing has meant sleepless nights.

    What will the future be like? I met John when I was 16 and married at 21. Everything in my adult life is tied up with him. The last 20 years has been a mixture of very good holidays and miserable worries as his behaviour threw me off balance continuously. The last 10 years I’ve been in charge of our lives totally and it has worn me down. How do you pick yourself up from this?

    It can’t be alcohol for me because I haven’t got the stomach or stamina for that. I just don’t know. Here I am awake at almost 4 am stressing over my boiler overflow and my husband in equal measure.
     
  5. sbmandj

    sbmandj New member

    Aug 21, 2019
    7
    You are NOT alone. This is a very caring and supportive group. Is there a local face-to-face support group you can attend? Do you have friends in the area or a faith community you can garner support from? I’m a psychotherapist, so I’m always interested in whether or not people have explored this option for help and support.
    I am facing the earlier part of this problem. My spouse still drives! It scares me. She can’t follow directions for a simple recipe. Can’t understand how to work the TV remotes. Just a couple of things from the recent past.
    I hope you’ll find comfort in talking with and hearing about others who understand your journey.
     
  6. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,455
    Female
    England
    I met three lovely ladies through Dementia as our husbands attended a group set up by their CPN for her early onset patients. Three of us would go for coffee whilst our men attended their 2 hour club as we called it. Friendship grew, three very different ladies but with one big thing in common, dementia.

    One became a widow after three years and one had a certain amount of freedom because she had grown up children at home. So they started going out and always asked me to join them but my answer was always no, sorry I can’t. But they never stopped asking. Then after 7 years my husband went into his nursing home and I visited daily. I now took up their offer of going for coffee which slowly turned to a look around the shops too. Then half a day out with me visiting my husband late afternoon into early evening. It progressed to a day out now and again to finally a week away with family covering my absence from the nursing home. My husband was four years in his nursing home.

    My husband died three years ago and my ‘dementia ‘ friends are here for the foreseeable future, hopefully for ever. We holiday together three times a year and have many days out. I also have gained other wonderful friends through dementia and feel really blessed to have them. Those who understand a life with dementia, the loss but not the loss when care homes become necessary and who understand my down days are not me being miserable but me still feeling the loss. If there is an upside to dementia this is it, friendship of those who understand.

    Advice for what it’s worth, take is slowly,
     
  7. Sarahdun

    Sarahdun Registered User

    May 18, 2014
    390
    Thank you. I don’t have such friends in real life but TP is great.
     
  8. Sarahdun

    Sarahdun Registered User

    May 18, 2014
    390
    This has been the ‘overnight’ thread ☺️ Hope you get the boiler fixed. My husband’s move has gone as well as it could, I think, I hope yours does too.
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,361
    Kent
    I did what can only be described as drifting.

    In the beginning, there was relief for me that someone else was sharing the caring. It was as if the worries of the world had been lifted off my shoulders.

    I visited daily at first then on alternate days. The days I didn`t visit are a blur. I don`t think I did anything. I certainly didn`t want to socialise, I had nothing in common with others who were planning holidays and outings.

    It was a while later when I realised this was me for the rest of my life and that was a tough realisation.

    What keeps me going now is knowing it`s better I`m left alone than my husband.
     
  10. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    755
    Male
    Newcastle
    #10 northumbrian_k, Aug 23, 2019
    Last edited: Aug 23, 2019
    I haven't got any real tips for coping alone @Sarahdun. Everyone is different, but we can all empathise with the need to fill the massive hole that is left once the 24 hour caring role has gone. Having given up work 5 years ago to look after my wife I am starting to think that, finally, I might be able to start my retirement for real. For me, the key is to recognise my self-reliance and ability to deal on my own with almost anything that comes my way (dementia taught me that).

    My wife went into care in mid-May and I have started getting into a routine of sorts. For about a year before she went into care I had one day a week of respite when her home support person was here, allowing me to reconnect with the real world and go cycling with my friends. I've got a dog walker to cover that day so that is continuing. On four days a week I visit my wife, just for about an hour, then have the rest of the day to myself (with the dog who is a massive comfort). It helps that her home is within easy cycling distance.

    It is not easy adjusting, but slowly I am starting to reawaken some of the interests and activities that I gave up over the previous 'dementia years' - now there's an Adrian Mole book waiting to be written.

    I'm becoming more involved with the greyhound rescue charity, starting to visit pubs again and even went for a meal out at one of our old favourite restaurants. By myself of course, but worth doing to get out of the house for the chance of some casual conversation with strangers. I no longer have to sit at home watching endless TV repeats just to keep my wife company - not that my company mattered that much to her - tending to her every need, answering her repeated questions and trying to calm her anxiety.

    I'm excited by the prospect of a cycling holiday in Spain later in the year and am giving serious thought to taking the kind of holiday that we used to enjoy together. I am determined that the last few sad years will not prevent me from having good times in future. There is no conflict or guilt here. I did my best for my wife - I still am - but it is my time now and not to be wasted. I hope!
     
  11. marionq

    marionq Registered User

    Apr 24, 2013
    5,790
    Female
    Scotland
    Your last few sentences are well worth repeating. I too have done my best although with hiccups along the way. John would never have wished me to be the stressed out wreck I am at the moment but I’m hoping that if all goes to plan I can do something with the years that are left.

    It is not going to be straightforward but then life rarely is.
     
  12. Sarahdun

    Sarahdun Registered User

    May 18, 2014
    390
    Thanks all - there are some very useful and kind tips here. We have all learnt to be hugely self-reliant - and I just have to apply that to my own life now.

    I have never lived alone, always been a carer (even when a child) and been with my husband for 40 years (as from next month), even if the last 14 years have been blighted by his ill health. Oddly I think one of the things I need to do is to visit this forum less - I have noticed that the more unsettled I am the more I visit TP and the more my mind dwells on all the Alzheimer's issues.

    I cannot find a way to delete my account but I will try to stay logged out. Good luck to you ALL! xxx
     
  13. kindred

    kindred Registered User

    Apr 8, 2018
    2,179
    #13 kindred, Aug 23, 2019
    Last edited by a moderator: Aug 25, 2019
    Kevin, thank you for this honesty. I see a lot of partners visit every day and we talk. They, like me, feel or rather felt (Keith died a month ago) that it is what they want to do, it feels right. In Keith's nursing home, there were no British people on the staff, it was lovely people from Poland and African countries. This was so good because they honoured our visiting as the right thing to do, not the default option because we can't move on.
    with warmest wishes, Geraldine aka kindred.
     
  14. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,331
    East of England
    #14 Grahamstown, Aug 23, 2019
    Last edited by a moderator: Aug 25, 2019
    It’s strange that you should write this because yesterday I had a visit from a well meaning cousin of my husband who almost prejudged how I should feel, how worried about me she was, although what she proposed to do about it was not forthcoming, what it meant to her when she went to his room and saw him lying thin and weak on his bed. He gave her a lovely smile because he would never forget to be a gentleman although he had no idea who she was and had forgotten about her almost as soon as she left. She never stopped talking with lots of cod psychotherapy talk and all I could do is say that I was glad she felt good about her visit, that it was what she took from the visit that was important. I really have no idea what she wants me to do, and I suppose it’s a consequence of their fear and ignorance of how to behave with people with dementia. It’s like the death of a thousand cuts for me but it’s what I have to do for him & all the admonitions to get more help, have some respite actually secretly irritate me. I have now got a bit of help, the doctors are supportive but meanwhile he is slowly starving to death because he won’t eat much and lies in his bed exhausted. So your post is very true and is very helpful.
     
  15. Philbo

    Philbo Registered User

    Feb 28, 2017
    666
    Male
    Kent
    I'm in a similar position as my wife's condition deteriorated suddenly whilst she was in for 2 weeks respite (see my post "Respite Woes").

    She is now in the same respite unit for a 6 week assessment and to be honest, I cannot see her coming back home.

    So from enjoying the 10 night holiday with my family in Turkey, I've returned to the mayhem of her being hospitalised (twice) and now the daily visit, where she is mainly asleep.

    Although I've read on TP many times about those of you going through the "going home to an empty house" situation, it hit me really hard.

    My saving grace is something I did way back when I first realised "the writing was on the wall". I managed to get her into a local pub in the town (something she would never do before) where we gradually met some lovely people who have become great friends.

    I unashamedly did this for 2 reasons - to keep my wife socialising as much, and as long as possible (nearly 6 years up until now) - plus to establish something for myself, for when I could no longer take her out (or the inevitable happened).

    So even at this early stage, I am already getting at least some well-needed support during these next uncertain few weeks.

    None of this came naturally to me, but for once, I managed to forward plan. We all have our own way of developing coping strategies so I wish anyone in the same situation the very best.

    Oh - the red wine (at home) and the real ale (anywhere else) certainly helps.

    Phil
     
  16. kindred

    kindred Registered User

    Apr 8, 2018
    2,179
    So very good to hear from you Grahamstown. I know, people prejudge us and bombard us with solutions. You are right, it is a consequence of their fear, being widowed is perhaps our biggest fear, understandably. But I don't feel like being especially tolerant these days!
    Of course it's the death of a thousand cuts for you. Keith starved himself to death and it took three weeks. At one point I said to him, sweetheart, are you trying to starve yourself to death? and he said, astonishingly, I can't move … he was by then paralysed. So I do wonder, I really do. Of course it is what you have to do for him and believe me,there is solace in knowing that you did that. Loyalty, grace under pressure, is the greatest love. With you in spirit, all honour and love to you. Geraldinexxx
     
  17. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,331
    East of England
    Dear G I too have got less tolerant of what people say. Our cousin said that she was so worried about me so I asked her what she was going to do about it. She had the grace to say sorry for saying that because there is nothing she can do. I explained that her concern was enough. Then she asked if she could come and see us and I said of course you can but in the ensuing ins and has about whether to tell her sister who would be jealous if she came alone, I finally said that if she wanted to come it would be for her own benefit because she wanted to do that. The truth is that it makes no difference to me if she comes or not, he won’t know her or remember but the fact that she showed she cared was enough. Isn’t it enough that he has lost everything, his work, his hobbies, his garden? I don’t have to collapse in a heap as well because that wouldn’t help at all. He is virtually starving himself unknowingly now, not like Keith who really was, and when in despair I asked him, he said no he wasn’t and was alright. Well that little rant has helped no end because the visit was quite trying for me to organise and execute. Your insight and understanding of all this is amazingly helpful and thank you for that x
     
  18. Herewego

    Herewego Registered User

    Mar 9, 2017
    95
    Midowhood - such a good term - I feel my life is in limbo. My husband has been in nursing home now since Dec 14th - 8mths. Being just before Christmas it was a relief as I knew Christmas at home with the kids/grandkids & my husband would have been very stressful (for both of us) plus the day centre he was going to would have been closed over Christmas/New Year. Then in the New Year as I now could, I went 'home' to see my mom (94) and family (sister has terminal cancer) who I had not seen for almost 2 years due to my husband not being able to travel or left alone. Got back and dove into trying to catch up on years worth of jobs around the house that had been put on hold and desperately needed attention - OK worked out I can't do them all at once or even this year but it is a work in progress. Then summer arrived and I am babysitting grandchildren 3 days a week........

    I started out visiting my husband 3 days a week - that is including travel time and spending about an hour with him it took up either a full morning or afternoon. He has gone through various stages and there was a time trying to visit, or plan a visit when he is likely to be awake was the luck of the draw. Waking him if he is asleep is not a good idea - if you do manage to wake him he is very grumpy and can be aggressive, so best leave him sleep - even if you could wake him. As summer and babysitting has arrived, I am now doing well to visit once a week - not that he notices. He seems to be on a plateau at the moment, his weight has stabilised (lost a lot when he first went in - he was on a downward spiral) not sleeping quite as much during the day but there is no real conversation, telling him about family or friends, he does not engage nor appear in anyway interested.

    I feel so bad for him as I feel he is living in limbo too - he clearly does like to see us but after about 15 mins, he has had enough. Some friends (a couple) that visit him about once a month - the last time they went they had hardly been with him long before he stood up and told them they would have to leave as he was busy! He has known them for the past 30 years and always got on well with them, but they said they were not offended and would continue to visit. I know he is being well cared for and the staff are great, so have no worries on that front. The medical care is great - besides the nursing care (24/7/365) they have a home appointed GP that is there every Monday & Friday & reviews every resident every week and is on call if needed at any other time.

    So where am I now & how do I feel? Guilty about not wanting or even feeling like visiting, in limbo, not able to move on with my life. I have always been very independent and as an introvert, I am comfortable with my own company and don't feel the need to do things with someone else. I have a good small circle of friends and we meet up once a month, I have my children & grandchildren that I see a lot of, and besides all the jobs that need doing around the house, I have loads of hobbies. What I do find is that when I do have time, I struggle for motivation - know I should/could do things, but can't be bothered - it is like I am just tired and want to sleep - but don't. Slight depression? Possibly but know that I can work my way through it - just need to get off my 'bum' and start moving........... Also, a to do list that is so full that I struggle with knowing where to start as so many things need doing and all seem high priority - then there are the things I can do and those I could do and those I need to pay someone to do - money is tight, OK but tight. I have never really been one for lists (in my head but not on paper) but know that I should write everything down and prioritise and work my way through the list - not quite sure why I have not done it although may be I will see exactly how much there is on it!

    Thanks for 'listening' - sometimes helps to just write things down.........
     
  19. AliceA

    AliceA Registered User

    May 27, 2016
    2,355
    All these posts have been thought provoking. What comes out is to give time and space, to get to know our oldest best friend again. Ourself.
    I am on the brink of seeking the possibility of care options for my husband, I do not have free choice as he will be dependent of social services input sooner than later.
    I am a constant prompt, now prompting on things I did not used to have to three of four weeks ago. Hospital stays have given me a taste of what may be yet to come.
    The struggle to visit and him too weary to bother much, bright greetings that fizzle out when tiredness creeps in.
    The empty house, not so strange as I have been doing most things for a long time. But I was listening out for him, waking at any noise thinking he needed me.
    I found that I pottered listening to radio four. It helps with the chores, I ate simply, I did not use dishwasher, I did not put TV on.
    I slept through.
    The main difference is I planned for him coming home, yet I was aware he might not.
    Listening to my own needs seemed simple compared to listening to his, with me I knew with him I hoped.
    Even after a long time together I do not assume I understand his every thought or new whim.
    So I am on the brim tottering. Family are assuming I need to get out and about. I am not so sure.
    Feelings are too complex to plan these ahead of time. I instinctly feel take it slowly, simple and listen to what draws.
     
  20. postigen

    postigen Registered User

    Nov 15, 2013
    28
    warrington
     

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