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.
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.
It seems I'm not the only one who found the move into care easier than expected.