Dad's move into care home

Discussion in 'Middle - later stages of dementia' started by Pingu, Aug 4, 2015.

  1. Pingu

    Pingu Registered User

    Sep 6, 2013
    13
    We moved my Dad (Stage 6 AD) into a dementia facility three weeks ago. I got a lot of useful advice from this forum on how to make the move, so thought I'd post some information here that may be of interest to those dreading this day (moving a suffering dementia patient into care). Dad's siblings all live overseas, so I wrote lengthy emails to them all as I knew they'd want to know everything. I wrote one email the day he moved, another three days later, and another two weeks after that. I've pasted them below.

    In a nutshell, I've never dreaded anything more than moving Dad out of his large rural property that he'd greened over the years, from the house that he'd largely built and furnished with furniture he'd made. But as you can see the move went a lot better than expected.

    I set his room up the day before he moved out (he had no idea what was going to happen, and would not have understood if explained to him). On the move day Mum took him in shortly before lunch, he sat down to lunch with the other patients, then Mum quietly left. That was it. Move complete.

    DAY ZERO <email begins>

    "Hi all,

    Just letting everyone know that Dad moved into a dementia facility today. His catastrophic decline over the last couple of weeks made this the only realistic option.

    He had a follow-up assessment two weeks ago by the same geriatricians who assessed and formally diagnosed him last October. They were aware of a major decline and were surprised he was not already in care. Since that assessment two weeks ago he has declined much faster than at any time before now.

    Some examples… he does not remember Mum’s name, is not generally aware she’s his wife (sometimes he is), he does not know he owns this property, keeps asking “Who’s the manager here?”, and in the last week asked “How are we going to get home?” (this was while sitting in his favourite chair in the corner of the lounge in the house he’s lived in for 37 years). He does not recognise his family members in photographs. A couple of days ago he asked me “Who is that young lady who gives me medicine in the evening?”; that young lady is my Mum, his wife of 57 years. A few days earlier he told me he’d forgotten his name, when I was about to answer he remembered it. And of course as I’ve mentioned previously, he has not known who I am for 9-10 months. Yesterday he was given a new pair of shoes, he said “This is no good, the tea will run out the hole in the end”, i.e., he identified a shoe as a teacup. Over the last two weeks every day he’s been worse than the day before. Overall it seems that for quite some time he’s believed he lives in some sort of rest home, and myself and Mum are among the staff.

    We’ve been leaving him unsupervised for a couple of hours at a time, Saturday was the most recent time. Over the last few days it’s become clear this is no longer safe and can never happen again. E.g., his behaviour with the wood stove (heating and water heating, it’s winter here) is not safe and losing the house in a fire would be just a matter of time without permanent supervision.

    People I’ve talked to over the last couple of years who have experience with dementia (i.e., they’ve lost a family member to this hideous disease) have told me (when I inquire about how long to keep the patient at home) “You’ll know when it’s time.” They were correct. A month ago I was not sure, I guessed that persevering a bit longer would make the move easier. Two weeks ago I thought that the time had come. A week ago I had no doubt at all. As of yesterday we were at breaking point.

    It is clear now that Dad has become overwhelmed with living on a large rural property in a house that is rather unsuited to a dementia patient. He has been robbed of most of the good things in life, e.g., his sense of smell and appreciation of food, his ability to read, his enjoyment of movies, his social life (everyone is a stranger now). He has no appreciation of the property that he greened and gardened. He wants to chop down all the deciduous trees that he planted (it’s winter, they have no leaves, so he thinks they’re dead). His sense of place or time is non-existent. He wanders around and finds things wrong everywhere and worries about them. His default state is anxiety. He has constant need for attention and reassurance. Mum used to read 6 books per week, this has dropped to half a book per week as the rest of her time is catering to Dad’s needs (principally his need for reassurance that everything is OK). Thirty seconds after being reassured he has forgotten everything and it needs to be done again.

    I believe – and hope – that he will be happier in a dementia facility than he is at ‘home’. The first week or two will likely be unpleasant for him as he adjusts, but the simpler life – and lack of things that ‘need fixing’ – will ease his anxiety. He will have plenty of people to talk with who are his current intellectual equal. When he needs help at 3.00am he’ll be met with the smiling face of a staff member who’s job is to help and to give him the reassurance he needs.

    I’m sorry for the bad news. I keep looking for a silver lining in this dignity-destroying and insulting disease, but there isn’t one. Perhaps the silver lining is that he had 75 good years?

    Mum is holding together well, better than me in fact!

    Love and best wishes to all."

    <email ends>

    There were three emotions in play here, no particular order:-
    Relief: We were being suffocated by a Stage 6 AD patient, and he was gone at last.
    Grief: My Dad was gone from home, never to return, it felt like he'd finally died.
    Worry: What kind of state was he going to be in having essentially been dumped at a dementia facility?

    DAY THREE <email begins>

    "Hi all,

    I’m sure at least some of you are wondering / worrying about my Dad and how he coped with the move, so here’s an update.

    We moved him in on Thursday (I got his room ready the day before). Based on advice, we didn’t visit on Friday. (It can complicate the transition if you visit too early, they may expect to be taken back home and will not have had time to become familiar with their new suroundings.)

    I paid him his first visit on Saturday morning, I also brought him his favourite walking stick. I saw him in the corridor, he seemed vaguely aware that he was looking at a familiar face, but recognised his walking stick. (His stick has been an extension of a limb for years now and was more recognisable than a family member.) Suffice to say I was shocked, I had expected something of the <my surname> belligerence (I mean that as a compliment to us all) to remain, e.g., for him to be waiting near the entrance and demanding to be taken home. There was none of that at all. He never mentioned ‘home’ or that he should be going anywhere or be somewhere else.

    Mum visited him a few hours later, and there was no difference. She does not believe she was recognised, and there was no hint from Dad that he was expecting to be taken away.

    I visited again on Sunday, I found Dad having a nap in someone else’s room (it’s not uncommon for dementia patients to fail to recognise their own room even if filled with familiar items). I left him and chatted to one of the staff for a while. Dad awoke from his nap and came down the corridor, I’d decided to keep silent to see if he recognised me. I continued chatting to the staff member as Dad arrived, there was no recognition of me at all. I led him back to his room and asked him about some of the items on the wall (some of his sketches and some family photographs). He talked for a while about his sketches. On the whole his speech now consists of low-volume semi-coherent mumbling and repetition. I mostly spent the time with him listening to what he had to say about whatever he wanted to tell me.

    Mum visited him today (Monday), he was sitting on a bench in the garden in the winter sun looking at the view of the hills. She does not think she was recognised. He chatted for a while and seemed content.

    We had been warned that the period of adjustment could be a few weeks or even a month (i.e, until the patient felt comfortable and stopped expecting to be taken home). It took two days. The remainder of Dad’s knowledge about his rural home of 37 years was already gone.

    On my last two visits I’ve been looking for any sign that things were ‘wrong’. Was he cold? Anxious? Did he think he should be somewhere else? I saw none of it. He’d walk down the corridor, look in someone’s room and state “That’s a nice room”. He’d be given a drink of fruit juice and say “This is delicious”. He’d walk past the entrance to the home (a door with a window) and not even look at it, he had no interest in finding a way out of there. The anxiety that had been slowly building over the last few years seems to be mostly – or perhaps even completely – gone. Home had become overwhelming; it was too big, there was too much ‘work’ to do and not enough people around to reassure him that all was OK. Dad had become a fish out of water in his own pond.

    The staff are exactly who I’d want to be looking after my Dad. They are happy, friendly, generous and empathetic. He is now exactly where he should be, for his own peace and contentment.

    This news will probably come across as bittersweet. The fact that Dad settled in to his new home in two days and is more content there than he had been here for quite some time is the good news, but of course that’s because he was even more profoundly broken than even we had realised. I had a couple of gut-wrenching days on Thursday and Friday imagining my Dad wanting to escape from what for me would be a prison. I’m feeling far better now, it was Mum and me who were in prison and Dad is now at 'home' where he wants to be.

    Love and best wishes,"

    <email ends>

    So the grief and relief remained, but the worry about Dad was gone.

    DAY TWENTY <email begins - heavily cut and edited for anonymity, it's a photo update and photos don't matter here>

    "Hi all,

    Here’s a photographic update of Dad in his new home.

    He has never asked to be taken away from ****, or even to be taken beyond the fence. **** is big enough for him, but more to the point, it’s not too big like his home was.

    He is putting on weight. I put that down to a general increase in appetite with the lifting of his depression. It certainly has nothing to do with the quality – or quantity – of food served up to him by Mum and me over the last few years!

    1. <photo of Dad sitting in a lounge holding a family photograph> Sitting in the quiet lounge (there are a few lounges). He struggles to identify the people in this photograph; some days are better than others.

    2. <photo of Dad dancing> Music was being played in the dining room, Dad got up and was the first one dancing, others followed. Probably the first time he’s danced for 10-15 years. A few days later some line dancers came to visit, here’s Dad dancing with one of them.

    3. <photo of Dad in the garden> Strolling in one of the three gardens. He thinks he planted those trees up on the hill behind (he didn’t) but nobody cares about such things any more. Although the fence behind is to keep the residents / patients (I believe ‘patient’ is the correct word, everyone there has this terminal illness) from wandering, I have never seen or heard of anyone who wants to leave, Dad included.

    I give the staff at **** 10/10 for everything so far.

    There’s not much more to say other than that the best thing that happened to him in the last couple of years was his move to **** Care Home. It appears that a massive weight has been lifted from his shoulders. The burden of responsibility that he felt at home is a thing of the past. The anxiety and depression are gone.

    We’re left with a lingering unanswerable question…. Would Dad have been happier over the last six, or twelve, or eighteen months if he’d moved earlier? My gut-feel is he would have resisted any attempt to move him a year ago, but maybe I’m wrong (I was wrong when we moved him, I expected him to ask to go back home but nothing of the sort happened). With hindsight there were numerous warnings that Dad was losing his sense of place and his identity with his home. E.g, a year ago before heading overseas for his last time he asked me why he and Mum were going to come back, he didn’t see the point. He regularly asked “Who’s the manager here?”. He wanted to chop down most of the trees he’d planted. He’d ask “Who owns this place?”. Then more recently he’d ask “How are we going to get home?” (this was while sitting in the lounge at home). What’s clear is that we left his move to the last moment possible, ostensibly this was for Dad’s benefit but with hindsight it was probably for nobody’s benefit.

    So, keep in mind that when faced with the tragedy that is dementia, moving your terminally ill patient into a safe, secure place like **** staffed by empathetic professionals may be the kindest thing you could possibly do for them.

    Love and best wishes,"

    <email ends>

    The one thing that is completely lacking here is any feeling of guilt at giving up and putting Dad in a home. I think this is because we left it late to the point where there was never any doubt about whether the 'time had come'. This may have also been why there were never any "take me home" thoughts from Dad.
     
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,206
    Merseyside
    Thankyou for posting that Pingu. I'm glad the move was easy for your Dad & relatively stress free for you.
     
  3. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    7,963
    North East England
    I think this is lovely because you are, hopefully, no longer showing or feeling the natural guilt. This guilt plagues so many of us, even me, who was delighted Mum went into a home before I murdered her!! My Mum knew that she was going into care...and she hated being there but grudgingly accepted it, most of the time!

    Your Dad, though physically present, has been replaced by a man who needs full time care and attention and you and your Mum have worked hard to get this for him. It doesn't mean you love him less, I think it shows the depth of your caring that you were able to find the right place for him and for you.

    I truely believe that his memories of you have not gone....but he has lost the pathway to reach them. They are buried deep where you can't reach them.....but when he smiles a fleeting smile and no one is there to see him, it might just be the memory of a laugh on a long forgotten day that is keeping him content.
     
  4. canary

    canary Registered User

    Feb 25, 2014
    10,531
    Female
    South coast
    Thank you for posting this pingu
    A lot of this reflects my experience with mum going into a CH, although it took her a couple of weeks to settle. She too has thrived, put on weight (although it now looks like she is loosing it again) and she has become much calmer - like you I believe it is because she no longer has to worry about trying to live in her home on her own.
     
  5. elizabet

    elizabet Registered User

    Mar 26, 2013
    224
    Southampton
    Although it is hard on us children having to move their parent into care , the relief when I finally moved my Mum into a nice care facility was overwhelming. hadn't realised how stressed I had been worrying about her and her carers in her own house. She thrived in her new surroundings eating well, having regular heart pills etc and there was something going on all the time around the home with staff checking to see she was o.k. and providing activities if the residents wishes to partake in them.I could visit her anytime and could "enjoy" quality time with her .
     
  6. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,623
    USA
    Pingu, thank you so much for your post. I'm a little overwhelmed and will need to read it again at another time, but wanted to say thank you. It's helpful to read about your experience and you are kind to take the time and effort to share that here.
     
  7. 2jays

    2jays Registered User

    Jun 4, 2010
    11,603
    West Midlands
    What a lovely annology... A fish out of water in his own pond

    No guilt monster that's brilliant - gut feeling says he needed the care home so no room for the guilt monster to start whispering.

    I have such admiration for you and your mum xxxxx


    Sent from my iPhone using Talking Point
     
  8. Rashley

    Rashley Registered User

    Dec 21, 2014
    20
    Devon
    Thank for posting your story of your dad's move to a care home. My husband has VD and I put him in to respite 6th July which has now become a permanent home for him. Your description of your dad's reactions were the same as my husbands and I have questioned whether I struggled on too long looking after him. It is a horrible illness and we all suffer ,there is no easy way through the progress of the disease. Best wishes x
     
  9. Apothecary

    Apothecary Registered User

    Aug 3, 2015
    2
    Difficult decison

    Thanks so much for your long and interesting post. We also struggled with this decision, made finally when we had to put Mum in respite while my Dad was having medical treatment.
    She too had lost her sense of place and constantly worried about the different people coming in to look after her 3 times a day. Some were not trained in dementia care (well, not many to be honest !) and would very quickly annoy Mum who then would refuse to cooperate ! When we put her into respite, we warned them that she could lash out when upset. But the calm environment with staff who knew how to treat their patients actually meant that Mum's outbursts came to a halt (except when she had to go into hospital, but that's another story!). She was still confused, still didn't know where she was, but somehow felt more at ease there and less panicky.
    From respite we found a home specialising in dementia care and she didn't return home. Dad visited regularly, although she didn't know who he was she liked to talk to him and always automatically reached for his hand ... Eventually Dad joined her in the same home.
    As long as the home has well trained and caring staff, interested in their residents, I think the person with dementia can at least spend their last days peacefully.
     
  10. JayGun

    JayGun Registered User

    Jun 24, 2013
    298
    Reading this has given me a lump in my throat. It's a lovely account. Thank you for posting it Pingu.
     
  11. Pingu

    Pingu Registered User

    Sep 6, 2013
    13
    Thanks everyone for all the positive comments. :) It seems I'm not the only one who found the move into care easier than expected.

    The staff at my Dad's care home seem to 'like' him, they often smile a little when talking to me or Mum about him. He's probably harder work than many of the other patients (he wanders and is curious about everything) but he's relatively happy, positive and gentle. He never had any paranoid or aggressive qualities develop.

    Of course his condition is going to worsen as it does for everyone with AD but there's no point worrying about that yet...
     
  12. fizzbomb

    fizzbomb Registered User

    May 10, 2014
    47
    lancashire
    what a lovely account of your dad's move into a home. Thank you, it gives me reassuarance. The feelings you have, the experiences,I can totally agree with even though my mam isn't in a care home yet. She is in a physciatric unit, after a failed attempt to move her into a home resulted in aggression and her being sectioned by them. She has been in the unit now for 7 weeks, and is currently awaiting to be discharged once we can find a suitable nursing home for her. Though this is proving hard due to her behaviour being at times on the aggressive side( though at other times she is lovely, and the staff there really like her. She dances a lot:)) .
    She was diagnosed 15 months ago with mixed dementia, and the decline since then has been shocking. From being totally aware of what she was diagnosed with, to now, being totally unaware of where she is, what is reality, and what is happening around her. She is still very active,walking a lot, ( and very fast!) and still knows us, but for how long we don't know.
    The thing that really rings a bell for me are the comments you made about your dad and his house 'The burden of responsibility that he felt at home is a thing of the past. '
    My mam was very anxious and depressed in her own house, she was constantly trying to do things. Though she didn't really know what it was she had to do,or how to do it, so this ended in her breaking coffee tables, pictures, vases,furniture, even chairs and a window. And it seems since she has left her home, she no longer has that responsibility, and it seems to have helped somewhat. It's as if that part of her has gone,almost(though she still goes round picking the smallest speck of anything off the floor of the unit she is in, and still wants to tidy peoples' cups away etc). She never mentions her house, it's as if she has forgotten it exists. She doesn't say she wants to go home,though she does still keep syaing she wants go out to the shops. She has stopped wanting to leave the unit with us when we leave after a visit. She just says bye and wanders off. Though she crys and crys when she sees us, and that is heartbreaking. I do still have guilt about the fact that I have to leave her there, but I know if she had been moved away from her house just 2 months earlier, things would have been much harder for her. In that short space of time, the decline was huge.
    It is right about knowing when the time is right. We knew, from what was happening, that she was not safe to stay at home any longer, even with carers.
    Though my mam's house wasn't a big house, it was still too much for her. It was as if once she was taken from that environment, we realised that it had been keeping her going. But not in a good way, in a way that just added to her frustration and fear and anger. I hope that makes sense. And at least some of that has gone. I say some of it, as she does still have outbursts of aggression. I did feel guilt, and do still struggle with that, though a lot of that is because I live at the other side of the country and so can't get to visit as much as I want (and to be honest guilt is our family trait we all excel at :eek:).
    So thank you, your post has helped, because so much of what you have said is how I feel, and am in the process of coming to terms with. The thing I find with this awful, sickening illness, is that the minute you come to terms with one aspect of it, it provides you with something new to face.
    I just pray that when my mam does leave the hospital to go into a home, her move will be as smooth as your dad's move. I am trying to keep reminding myself that what I do for my mam is borne out of love, and the need to keep her safe and as happy as she can be. And your post has really helped.
    Keep strong, and thankyou once again for posting your experiences
     
  13. Antimony

    Antimony Registered User

    May 3, 2015
    1
    Kent
    Thank you so much for posting this, we're just getting ready to move dad into a care home and I've been absolutely terrified! I can only hope that dad settles in so easily as well and it's reassuring know that it might not be as traumatic as I'm expecting.
     

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