Personal Perceptions

Little Circles

Registered User
Mar 30, 2017
119
0
Derbyshire
This sounds like a rant or a bitter post but it isn't, I just hope that people can change their perceptions of Dementia. It is a reflection of my thoughts and in putting pen to paper or in this case clicks on the keyboard I find some healing in dealing with the maze of Dementia.
The purpose of this post is to hope that society in general become more accepting and give dignity to people with Dementia. On the forums most people here do realise how hard Dementia can be. Perhaps I am too sensitive, maybe I take too much to heart what people say, but I feel that since my Dad moved into a Nursing Home he has become as I perceive from other people, family and his friends, a second-class citizen, sort of written off from society. I have noticed he doesn’t get Birthday cards or Christmas cards like he used too, one person said I didn’t think he would know if it was Christmas or not! Maybe that might be right but there are lucid moments. I feel like I am the only one that bothers about my Dad, everyone one says ‘oh it is so sad’, and ‘it’s such a shame’ but people say the words but I feel they are saying it because they feel they ought too. I understand everyone has busy lives, but it is like Dad has ceased to exist. People offer ' How’s your Dad?' but you can tell they expect a’ he's fine’ response. Dad is far from fine! I know and agree that he is in the best place to cater for his needs but what hurts is that no one really seems to care. I feel the nursing home and myself has more empathy with Dad than anyone else. People just say the words but have not a clue what Dad is going through, I feel they think he has been put in a home and that’s end of story and all the family and so-called friends get on with their lives and couldn’t give a damn about my Dad. I feel like he has been written off and now just ‘waiting for God’ It is like he is a second class citizen and all the family and friends never thinks it can happen to them. You get 'well least he/she have their marbles' My Dad is far from perfect but he still a human being and I had expected some level of dignity to be shown to him. You should never judge people until you have walked in their shoes. Yes, I want Dad back home, yes, I was him to be less confused and not suffering from this cruel dementia and be accepted back into what society feels is ‘normal’ I wish I had more control over my and Dad’s situation with how he and I deal with this new ‘normal’ we find ourselves in. I know he can never come home I know he can’t care for himself even with my help, I know he can’t do simple tasks. I used to look after him, but it is now sadly beyond me. Perhaps people don’t know how to interact with Dad now and feel uncomfortable, and to be honest I can understand that but my heart breaks sometimes when I seem the only one to visit or care what happens to my Dad. Perhaps I too didn’t have they greatest understanding but since Mum and now Dad have had dementia I sincerely hope people attitudes soften towards people suffering from this cruel disease. I just wondered if anyone else felt the same or experienced the same?



Everyone’s Dementia journey is unique to them.
 

Yankeeabroad

Registered User
Oct 24, 2021
162
0
Hi @Little Circles. I don’t think you are alone here after seeing many other posts.

I feel lucky in that some of my mom’s friends have rallied round and still visit and call. But I think most of them have had personal exposure to dementia and generally in the US people are much more aware of the disease. I also feel lucky I’ve found this forum.

I am personally pretty annoyed/upset right now with my friends and in-laws (in Norway). I don’t think I’ve had one word of acknowledgment about the challenges of having a parent (much less both) with dementia. Everyone seems much more sympathetic to my husband because I’ve been away sorting out my parents and spend 1-4 hours a day caretaking remotely. It may be a cultural thing (I’m in Norway at the moment), but guessing most people here don’t have a clue about dementia and don’t want to.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,447
0
Kent
Perhaps I too didn’t have they greatest understanding but since Mum and now Dad have had dementia I sincerely hope people attitudes soften towards people suffering from this cruel disease.

I think this is the truth @Little Circles. Few of us appreciated dementia until we had personal experiences and this is typical of society.

We are all trying to raise awareness but people with no experience are afraid and perhaps think if they don`t acknowledge it , it might not knock on their doors.
 

Alison E

New member
Jan 26, 2022
1
0
Hi I have just joined this group and have been reading through many posts but this one is absolutely where I am right now.

I can totally empathise with your thoughts and feelings Little Circles. My Mother has mid stage Vascular dementia and Alzheimer's. She has been in a care home for 16 months now in the town my Sister lives in, quite a distance from her home and from me and my Brother. It has become clear to us that we are all she has now, the letters, cards and phone calls from extended family and her wide circle of friends have all stopped - it is as if she has ceased to exist.

As you said in your post, everyone has the sympathetic words to say and also criticism over the way we are managing her care like 'putting' her in a care home is somehow a bad thing to have done. None of them had to cope with the stress, worry, phone calls, car crashes, starving herself, excessive drinking, one disaster after another and sleepless nights. They also don't have to deal with the guilt we feel for "locking her up" as she sees it.

It really is the cruelest of diseases both for the sufferer and their loved ones. I am so glad I found this forum where others understand the torment.
 

Izzy

Volunteer Moderator
Aug 31, 2003
74,002
0
72
Dundee
Welcome to the forum @Alison E.

I’m sorry to read about your situation but I’m glad you’ve found the forum. I know you will get a lot of help and support here.

You might want to think about starting a thread of your own. It’s a good way to keep track of the support you will undoubtedly get from other members. Here’s a link to the I Care For A Person With Dementia area. If you begin a thread there you’ll be able to ask questions, share concerns and even have a rant if your need to!

 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
'Putting them in a care home' I can't count how many times I have heard people say this like it was some kind of a crime. One of my dads sisters went into a care home with dementia, his other sister was appalled and told me that my cousin and his wife couldn't wait to put her sister in a care home. This was far from the truth, I have spoken to them and I know that they were at their wits end with worry and it was a very hard decision for them but it was the right decision.

When I was looking after dad his same sister used to ring me and tell me 'what a good job I was doing' and to 'keep it up' I never found that helpful even though I was doing a good job. Perhaps she wanted me too feel good but it didn't, it made me feel even more helpless.

It's true most people are not interested but dad had one dear friend from school who used to visit him regularly and I was so grateful for that.

I now have a 93 year old aunt who has recently been diagnosed with alzhiemers and I visit her every couple of weeks and she is very good company. Visiting her can be tricky and I prefer it if my cousin is there at the same time or one of the carers because I don't want to turn up and find auntie still in bed. It is a bit of an effort to get her up lately and I don't want to be the one to make her get out of bed when I ring the doorbell so I check before I go. I don't think that she has many visitors other than her daughter who is looking after her and the daughters grown up children.
 

Kapow

Registered User
Nov 17, 2019
161
0
'Putting them in a care home' I can't count how many times I have heard people say this like it was some kind of a crime. One of my dads sisters went into a care home with dementia, his other sister was appalled and told me that my cousin and his wife couldn't wait to put her sister in a care home. This was far from the truth, I have spoken to them and I know that they were at their wits end with worry and it was a very hard decision for them but it was the right decision.

When I was looking after dad his same sister used to ring me and tell me 'what a good job I was doing' and to 'keep it up' I never found that helpful even though I was doing a good job. Perhaps she wanted me too feel good but it didn't, it made me feel even more helpless.

It's true most people are not interested but dad had one dear friend from school who used to visit him regularly and I was so grateful for that.

I now have a 93 year old aunt who has recently been diagnosed with alzhiemers and I visit her every couple of weeks and she is very good company. Visiting her can be tricky and I prefer it if my cousin is there at the same time or one of the carers because I don't want to turn up and find auntie still in bed. It is a bit of an effort to get her up lately and I don't want to be the one to make her get out of bed when I ring the doorbell so I check before I go. I don't think that she has many visitors other than her daughter who is looking after her and the daughters grown up children.
Yes,your post resonates with me totally.People seem to think that "putting them in a care home" is an easy decision,and I don't think they have the slightest idea of how hard it is to make that decision.My husbands sister rang me one day and said "You will have eff all to do now you've banged him into a home.."Needless to say we no longer speak.How can people be so unfeeling?
 

CAL Y

Registered User
Jul 17, 2021
632
0
Yes,your post resonates with me totally.People seem to think that "putting them in a care home" is an easy decision,and I don't think they have the slightest idea of how hard it is to make that decision.My husbands sister rang me one day and said "You will have eff all to do now you've banged him into a home.."Needless to say we no longer speak.How can people be so unfeeling?
@Kapow . That is a shocking thing to say. You are certainly better off not speaking to her any more.
I often think that it’s a shame that people with that attitude can’t be “sentenced “ to a couple of weeks looking after a PWD..
It might just open their eyes a bit.
 

Kapow

Registered User
Nov 17, 2019
161
0
@Kapow . That is a shocking thing to say. You are certainly better off not speaking to her any more.
I often think that it’s a shame that people with that attitude can’t be “sentenced “ to a couple of weeks looking after a PWD..
It might just open their eyes a bit.
It's always the ones that have never done it that have the most to say on the subject.My New Years resolution,and one I am most definitely sticking to is,dispense with all those people in my life who are prepared to believe the worst of me.I have had to find a strength mentally,that I never thought I possessed.
 

Rosettastone57

Registered User
Oct 27, 2016
1,839
0
My experience is that unless the person has seen dementia in action or has personal experience of what the disease entails, they really haven't got a clue. I think there's still a perception amongst the public, that this is a disease that means your gran might get a bit forgetful and of course in the care agency adverts the person with dementia is always smiling and willingly taking a cup of tea from their carer
 

CAL Y

Registered User
Jul 17, 2021
632
0
It's always the ones that have never done it that have the most to say on the subject.My New Years resolution,and one I am most definitely sticking to is,dispense with all those people in my life who are prepared to believe the worst of me.I have had to find a strength mentally,that I never thought I possessed.
@Kapow .Good for you. They have no Idea.
 

CAL Y

Registered User
Jul 17, 2021
632
0
My experience is that unless the person has seen dementia in action or has personal experience of what the disease entails, they really haven't got a clue. I think there's still a perception amongst the public, that this is a disease that means your gran might get a bit forgetful and of course in the care agency adverts the person with dementia is always smiling and willingly taking a cup of tea from their carer
@Rosettastone57 . That is so true.
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
Yes,your post resonates with me totally.People seem to think that "putting them in a care home" is an easy decision,and I don't think they have the slightest idea of how hard it is to make that decision.My husbands sister rang me one day and said "You will have eff all to do now you've banged him into a home.."Needless to say we no longer speak.How can people be so unfeeling?
Wow, I am not surprised that you no longer speak and what a thing to say. You just have to read some of the posts on here and and it is obvious that people agonise over the care home dilemma and once the loved one is in a care home the poor ex carer is often left distraught with worry and guilt. It's a no win situation and very sad.
 

Frank24

Registered User
Feb 13, 2018
420
0
@littleCircle… I could have written this myself.. apart from one sister no one bothers with my mum anymore. Even her own son. I am grateful for my Aunty. My family member commented that she would prefer to remember my mum as she was… not a luxury is main carers or doers can afford at the expense of our loved ones. Putting someone on a care home is the hardest thing to do that I do think anyone wants least of all the person you are deciding it for so to say it’s easy and you’ll now have eff all to do is quite honestly nonsense. Some people are clueless they really are. Some people are well meaning but say very stupid things… whether you supporting someone in the community or a carehome it can be a hard lonely journey.
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
When I told a friend that I was thinking of putting dad in a care home, she looked at me horrified and said 'I could never do that to somebody I love' She didn't have a clue what it was all about. I never did put dad in a care home but I certainly considered it.

The thing is that her mum is now showing signs of alzhiemers.
 

Frank24

Registered User
Feb 13, 2018
420
0
When I told a friend that I was thinking of putting dad in a care home, she looked at me horrified and said 'I could never do that to somebody I love' She didn't have a clue what it was all about. I never did put dad in a care home but I certainly considered it.

The thing is that her mum is now showing signs of alzhiemers.
I hope she doesn’t have to but it’s not just being forgetful… one of the hardest thing is the constant supervision required.