Why is dementia not accepted by residents within private assisted living

[Mybeautifulboy]

I post this with a heavy heart. For the last five years of my moms diagnosis I have looked after my moms needs emotionally and financially.

Today which is not uncommon, I had to yet again witness an adult female pensioner within an assisted living development tell me and my mom in front of an open forum how we are not welcome as we are infringing on her dignity to enjoy her retirement.

What sparked this you may ask? Both myself and a carer were trying to support mom to attend her usual day centre and she clearly didn't want to go. Shouting out because this is the only form of communication that someone of this condition can be heard clearly upset the tranquillity of other home owners and sparked somewhat unsavoury comments including your mom is mental.

At this point my mom who by the way may not be able to communicate can understand hurt and was getting distressed by this. I had to leave the carer to take over as I was devastated and stood by in the wings and watched a gentleman get up and stand over her and block her in shouting shut up will you.

This is my moms home, private home, which I proudly helped her buy as 2 years ago I was worried about her living alone in a four bedroomed house being hounded by window companies, canvassers etc.

I have sat here today bereaved beyond belief that such people exist. My mom is still a women trapped in this shell of a body, not bothering anybody and even though she cannot voice an opinion, can still hear nasty comments and feel atmosphere. I am her voice of concern and feel her pain. Why cant people live in harmony. Dementia is not a mental illness but a terrible disability no different to that of someone being hindered in a wheelchair.........so why!!!

I have beaten myself up thinking I put her in the wrong place. I will know when mom is not suitable to live where she is. I want her to remain independent which has been endorsed by medical practitioners and have increased her care package to cater for this along with organising transportation to an independent day centre which she loves. Surely the decision to move should be mine on behalf of my mom and not a forced one because of somebody is verbally telling my mom she is mental.

My mom would have done anything for anybody so why does she deserve this?? I am told this is not uncommon within assisted living.............please help, does anyone else experience the same?

Thank you for taking the time to read this.

 

[nellbelles]

Hi @Mybeautifulboy welcome to TP
I’m so sorry to hear about the lack of respect shown to your Mum, I suppose it is a lack of understanding combined with a fear of the unknown
You will find much understanding and support here, I hope you keep posting

 

[Izzy]

Hi @Mybeautifulboy and welcome from me too.

I'm sorry your mum is experiencing this. It must be very hard for your both. I haven't any experience of this but as nellbelles says there's always someone around her to listen.

 

[Kevinl]

Hi, and welcome to TP
I'd like to say I've never heard a story like yours before but unfortunately they come up on here regularly. Some (and I mean some, not all and not even most) older people can become very intolerant of what they see as a bad neighbour be it in assisted living or out in the general community, you can read stories in the paper most days of elderly people falling out with their neighbours and coming to blows.
Where you might think older people would be more sympathetic/empathetic to a person with AZ it isn't always the case some show no sympathy at all.
My wife's in an EMI nursing home and one of the big flashpoints is the ones who still have some capacity getting aggressive with the ones who don't, if someone gets in their space and it all kicks off, it's a happens all the time.
Usually in assisted living it's people wandering around and knocking on other people's doors that causes the issues but eventually if too many of the other residents complain the management will have to become involved and what happens then, I don't know.
K

 

[DeMartin]

Mum owned a flat (1of6) in a converted house, limited to over 60’s. 1 of the residents was a lady who may have drunk more lager than was seemly, and later on was a bit odd. Mum was totally intolerant of her behaviour, bitterly complaining to me. The lady was finally diagnosed with dementia after a few incidents with her gas stove, and moved eventually into care.
I was amazed by mum’s intolerance, but now she is in care too, so she probably had early stages of dementia herself.

 

[Mybeautifulboy]

Hi @Mybeautifulboy welcome to TP
I’m so sorry to hear about the lack of respect shown to your Mum, I suppose it is a lack of understanding combined with a fear of the unknown
You will find much understanding and support here, I hope you keep posting

Thank you so much for your response, it means a great deal x

 

[Mybeautifulboy]

Hi @Mybeautifulboy and welcome from me too.

I'm sorry your mum is experiencing this. It must be very hard for your both. I haven't any experience of this but as nellbelles says there's always someone around her to listen.

Thank you x

 

[Mybeautifulboy]

Mum owned a flat (1of6) in a converted house, limited to over 60’s. 1 of the residents was a lady who may have drunk more lager than was seemly, and later on was a bit odd. Mum was totally intolerant of her behaviour, bitterly complaining to me. The lady was finally diagnosed with dementia after a few incidents with her gas stove, and moved eventually into care.
I was amazed by mum’s intolerance, but now she is in care too, so she probably had early stages of dementia herself.

Thank you, I get that and am sorry to hear about your mom. However, this lady is definitely of sound mind as equally is her husband and I cannot forgive anyone who cannot empathise with others in harmony. Jane x

 

[kindred]

I post this with a heavy heart. For the last five years of my moms diagnosis I have looked after my moms needs emotionally and financially.

Today which is not uncommon, I had to yet again witness an adult female pensioner within an assisted living development tell me and my mom in front of an open forum how we are not welcome as we are infringing on her dignity to enjoy her retirement.

What sparked this you may ask? Both myself and a carer were trying to support mom to attend her usual day centre and she clearly didn't want to go. Shouting out because this is the only form of communication that someone of this condition can be heard clearly upset the tranquillity of other home owners and sparked somewhat unsavoury comments including your mom is mental.

At this point my mom who by the way may not be able to communicate can understand hurt and was getting distressed by this. I had to leave the carer to take over as I was devastated and stood by in the wings and watched a gentleman get up and stand over her and block her in shouting shut up will you.

This is my moms home, private home, which I proudly helped her buy as 2 years ago I was worried about her living alone in a four bedroomed house being hounded by window companies, canvassers etc.

I have sat here today bereaved beyond belief that such people exist. My mom is still a women trapped in this shell of a body, not bothering anybody and even though she cannot voice an opinion, can still hear nasty comments and feel atmosphere. I am her voice of concern and feel her pain. Why cant people live in harmony. Dementia is not a mental illness but a terrible disability no different to that of someone being hindered in a wheelchair.........so why!!!

I have beaten myself up thinking I put her in the wrong place. I will know when mom is not suitable to live where she is. I want her to remain independent which has been endorsed by medical practitioners and have increased her care package to cater for this along with organising transportation to an independent day centre which she loves. Surely the decision to move should be mine on behalf of my mom and not a forced one because of somebody is verbally telling my mom she is mental.

My mom would have done anything for anybody so why does she deserve this?? I am told this is not uncommon within assisted living.............please help, does anyone else experience the same?

Thank you for taking the time to read this.

Sweetheart, this is awful. It is part of the overall pressure to keep people with dementia hidden, not to bother other people. I am sorry you were faced with this ignorance. You have done so well making provision for your beloved mother. I guess so many of us on TP ghave experienced something like this, alas. There are so many magnificent people on this forum, please talk to us, we can help.

 

[Jessbow]

You have answered your own question really, in your opening paragraph.

''its disturbs their tranquility''. Its all sounds quite traumatic, her screaming , another resident shouting at her.
You say she isn't bothering anybody- I think she is. She is seemingly bothering the other residents

Is she supervised 24/4? What happens when she is alone?
I wouldn't be leaving my mother there.

 

[Pickles53]

I’ve seen both sides of this. My parents-in-law lived in a retirement complex and I have to say the other residents were hugely sympathetic and supportive of MIL with dementia, never an unkind word even when she wandered into their flats looking for ‘home’. However, we also own a flat in a small block (not assisted living but several quite elderly residents) and some are experiencing considerable difficulties because one lady with dementia is frequently to be found banging on other doors and crying outside. This is very distressing; they are worried that the lady is vulnerable but frustrated that her family seem to be unable to provide the support she needs. That’s not you, of course, but the key difference seems to be what happens when the person is alone.

Deliberate unkindness is never justified but it might be advisable to see if you can discreetly find out whether there is a problem you aren’t aware of?

 

[love.dad.but..]

I am sorry that you and your mum are facing this situation and the public manner in which this has been aired and it is inexcusable for the particular lady to vent her frustration and anger in the way she did but I can see this from your side and the other point of view but I tend to agree with Jessbow. Sometimes Assisted living can only be a solution when dementia is in earlier stages and depends greatly on what support is offered/given when you are not with your mum. Even in a dementia care home or NH with varying pwd stages the presentation of some will upset others albeit they all have dementia. I saw in my dad's NH some in earlier stages who still had reasonable cognitive awareness to understand why some shout and get agitated etc but very intolerant of those other residents. It really depends on the terms of the assisted living arrangement as to whether the situation can be resolved bearing in mind that your mum will decline and other residents also have needs of peaceful living. It may well be that this lady has no first hand experience or knowledge of dementia and tbh to hear or witness this horrible unpredictable illness without any understanding is frightening and maybe it is ignorance but difficult to change if the lady is unwilling to engage reasonably. But a public forum with you and more importantly your mum having to face this is inexcusable...perhaps regular incidents had led to this lady boiling over.

 

[Quizbunny]

First of all I am very sorry for the situation you, and mum find yourselves. That said I do think that the feelings of other residents and neighbours need to be considered. You say that you will know when mum is not suitable to live there any longer. If her neighbours react to her dementia in an increasingly violent way I would say that point has probably been reached.

 

[RedLou]

My personal experience was that utter self-absorption and lack of empathy was one of the early, early warning signs of dementia, so it may be that these other residents are a few years away from their diagnosis... I also remember my father telling me he'd screamed at a waiter, and that he put this change of mood down to his osteoporosis drug. I do wonder now. Anyway, it may help you to think of them like that, rather than simply horrible human beings.

 

[Hair Twiddler]

I agree your mum does not deserve this. It sounds like her needs have altered since she first joined the assisted living facility, perhaps a frank and open discussion with the manager and other staff members would throw light on your mum's 24hr a day living patterns and ensure that her future well being can be well planned.

On a related note, so many "luxury retirement villages" seem to be being built/converted from palatial old buildings. Some I read have swanky restaurants, spa and gym facilities. Great....or is it? Statistics suggest that a percentage of residents will develop some form of dementia and we all have stories of PWD being totally and absolutely adamant that "there is nothing wrong with them", how will they cope with 'using the gym' , 'having a dip in the spa', 'parking their car in a designated parking space'?
I for one will not be putting my name down for a flat, even if I did have the £750,000 (yes, you read that) to buy the penthouse suite at a local establishment.

 

[MaryH]

Sorry you and your mom had this issue and stress.

I participated in a dementia friendly community research in Canada in my local city and one of the items can up there and in support group meetings is that sometimes friends and neighbours drop you and your loved ones when they have dementia. There are some stigma associated with Dementia or people are uncomfortable and some just lacked empathy. There are initiatives to try to end the stigma here with a lot of advocats pushing for it.

But if your mom loved the day program but was resisting to go, can you identify the reason? If there is not easy to identify why and there are more incidents like that, maybe it is time to reevaluate her current state to see if independent living is still safe and suitable for her.

Dad did not want to go anywhere and resistant of some things but also for something he wanted (i.e. more candy after he ate a week supply in a couple days and he is diabetic) he could be quite vocal and have slapped himself (I have been told his mother used to hit her head against the wall to control her family) and once he lay down on the hardwood and had a temper tantrum. That along with incontinence was a sign he hit mid stage and we got more care hours allocated and starting talking about getting additional help maybe privately before he had his stroke last summer then the die is cast since with his right side paralyzed and a 2 person lift, options are a little limited..

 

[Rosettastone57]

You have answered your own question really, in your opening paragraph.

''its disturbs their tranquility''. Its all sounds quite traumatic, her screaming , another resident shouting at her.
You say she isn't bothering anybody- I think she is. She is seemingly bothering the other residents

Is she supervised 24/4? What happens when she is alone?
I wouldn't be leaving my mother there.

I tend to agree with Jessbow. How other residents have reacted to your mum isn't acceptable however I can see the other side of the coin . My husband and I were "bothered " by an ex neighbour who rapidly deteriorated with dementia. We thought we were empathetic as my MIL has the disease. But it all got a bit much when the neighbour was on our doorstep at all hours talking about dead family members. My husband got very frustrated as he thought family members weren't doing enough. Eventually the neighbour moved away but still phoned me so we blocked her phone number. Even with my MIL any mention of dementia has caused some family and friends to keep well away. Perhaps time to reassess your mum's needs

 

[Witzend]

I don't have personal experience of assisted living, but do have experience of a PWD endlessly knocking on neighbours' doors at all hours of the day and night, because they have lost their keys yet again, or e.g. their remote control 'isn't working' (because they have been fiddling and taken the batteries out, or are trying to use a phone instead) , or because they are convinced that the neighbour has stolen something.

Sadly, I would guess that matters like this are the issue. People in assisted living accommodation are almost invariably by definition elderly, and may well be on the frail side, and they find it hard to cope with such things on a regular basis.

 

[Hazara8]

I post this with a heavy heart. For the last five years of my moms diagnosis I have looked after my moms needs emotionally and financially.

Today which is not uncommon, I had to yet again witness an adult female pensioner within an assisted living development tell me and my mom in front of an open forum how we are not welcome as we are infringing on her dignity to enjoy her retirement.

What sparked this you may ask? Both myself and a carer were trying to support mom to attend her usual day centre and she clearly didn't want to go. Shouting out because this is the only form of communication that someone of this condition can be heard clearly upset the tranquillity of other home owners and sparked somewhat unsavoury comments including your mom is mental.

At this point my mom who by the way may not be able to communicate can understand hurt and was getting distressed by this. I had to leave the carer to take over as I was devastated and stood by in the wings and watched a gentleman get up and stand over her and block her in shouting shut up will you.

This is my moms home, private home, which I proudly helped her buy as 2 years ago I was worried about her living alone in a four bedroomed house being hounded by window companies, canvassers etc.

I have sat here today bereaved beyond belief that such people exist. My mom is still a women trapped in this shell of a body, not bothering anybody and even though she cannot voice an opinion, can still hear nasty comments and feel atmosphere. I am her voice of concern and feel her pain. Why cant people live in harmony. Dementia is not a mental illness but a terrible disability no different to that of someone being hindered in a wheelchair.........so why!!!

I have beaten myself up thinking I put her in the wrong place. I will know when mom is not suitable to live where she is. I want her to remain independent which has been endorsed by medical practitioners and have increased her care package to cater for this along with organising transportation to an independent day centre which she loves. Surely the decision to move should be mine on behalf of my mom and not a forced one because of somebody is verbally telling my mom she is mental.

My mom would have done anything for anybody so why does she deserve this?? I am told this is not uncommon within assisted living.............please help, does anyone else experience the same?

Thank you for taking the time to read this.

It is natural to wish to see one's loved one safe and secure and 'independent' in an Assisted Living environment. The problem arises with how dementia infiltrates those other 'independents' lives. I believe that some 'assisted living' establishments have say a nurse in place or other care options which facilitate appropriate 'care' in these circumstances. But if other residents are expressing unease, this is not ideal for one's loved one, as you want an environment which does not exacerbate the dementia. Of course, if people were to consider others in the way which is constantly proclaimed from pulpits throughout the land, then things might prove to be much more manageable and a degree of compassion would enable folk to live together more sensitively. Yet, there comes a time when 'best interests' looks to 'memory assisted living' in order to provide a quality of life devoid of angst or opposition. It is quite true that you will find almost exactly the same behaviour in a Care Home from residents, but where every single case presents dementia at differing levels, the 'language' of that dementia seems to function in its own way, i.e. not from the standpoint of normal cognition with all its prejudices and inherent lack of understanding. The 'wheelchair' analogy is a fair one, but the 'psychological' world opens up a real can of beans and we humans are still treading a rather wonky path in that respect. When the situation is contained, as when in one's own home, that unfortunate interaction rarely occurs and when it does in the public domain, then it seems that empathy comes about subject to an accepted level of understanding, i.e. the instinctive reaction to the 'norm', whilst anything out of the ordinary can evoke antagonism borne out of unawareness or simply a reluctance to address the reality of the situation at all.

All the same, I have to sympathize with all you say and trust that this is more of a 'one off' event, rather than a trend.

 

[myss]

I tend to agree with Jessbow. How other residents have reacted to your mum isn't acceptable however I can see the other side of the coin . My husband and I were "bothered " by an ex neighbour who rapidly deteriorated with dementia. We thought we were empathetic as my MIL has the disease. But it all got a bit much when the neighbour was on our doorstep at all hours talking about dead family members. My husband got very frustrated as he thought family members weren't doing enough. Eventually the neighbour moved away but still phoned me so we blocked her phone number. Even with my MIL any mention of dementia has caused some family and friends to keep well away. Perhaps time to reassess your mum's needs

I agree with this because my dad was the person who knocked on his neighbours' doors in the middle of the night. He did this due to his habit of wandering and it's only when the cold air hits him is when he 'wakes' up and realises that he should be inside and doesn't have his keys on him to get back in.
The neighbours have been great, we've provided them with our phone numbers, and each time we turn up for dad and apologise they say no problem, but we are also keen to keep the interruption to a minimum because I can imagine how annoying it is to have their sleep or plans for the following day interrupted like that and the effect it could have.

As Rosettastone57 said how it was said to your mum @Mybeautifulboy was rude but I somewhat understand their sentiments as well as your own. My dad's not in assisted living but I am dealing with a similar issue re. someone who should know better saying something untoward, so I can imagine how horrified the both of you must have felt when it was said.
I would take this opportunity to speak with the assisted living manager to see if there is something further that can be done to make things easier all round or if there needs to be a change to the care arrangement your mum currently has.