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It’ll only get worse

Rach1985

Registered User
Jun 9, 2019
404
Dad is in middle stages of Alzheimer’s now and he is progressively getting worse and lockdown certainly hasn’t helped. In the past few weeks I’ve seen 3 different people who know about my Dads diagnosis when I’ve been walking my dog. They are neighbourly shall we say and a little nosy but all around good kind people who I know if they saw Dad confused or wondering they would help him. But all 3 have said it will only get worse Rachel, it won’t get any easier. And when I say yes I know (I’m seeing it/living it each day) they all replied oh it will get really bad and you’ll get the brunt end of it. I dunno it’s almost like they take pleasure in telling you if you think your life is **** right now just you wait it’ll only get even crapper.
I don’t get it. I don’t want fakeness or people saying it’ll get easier because I know that it won’t. But why aren’t people more supportive? Saying you’re a strong person Rachel you’ll get through this?
I suppose I’m just feeling like people are expecting me to fail, or they think I’m not sufficient enough to deal with it
Rant over!
 

Frank24

Registered User
Feb 13, 2018
32
I don’t think people realise how disheartening this can be. Sometimes it comes from a good place. I got very sick of family and friends saying it to me so I can understand your emotion x
 

DaveCr1968

Registered User
Jul 5, 2020
43
Hi there

I'm in a similar boat so lots of sympathy. Mum passed away suddenly last week after a short illness and dad has severe dementia, so I was drafted in to look after him while she was in hospital. She was protective but things were getting too much for her anyway.

In this respect, aside from one "know it all" who is dispensing advice on what I should be doing, all of mum's friends have been really supportive and helpful. Speaking to the "know it all" is really hard work and quite disheartening.

It is SS who are causing the issues. They have agreed dad needs residential care but are continuously attempting to get me to stay here. I live 180 miles away and this is dragging me down rapidly.

I'm even resorting to telling SS I am leaving on a certain day so they will take action. They have duty of care.

Dave
 

Rach1985

Registered User
Jun 9, 2019
404
I don’t think people realise how disheartening this can be. Sometimes it comes from a good place. I got very sick of family and friends saying it to me so I can understand your emotion x
Yes disheartening is right! Just makes me doubt myself. I don’t think anyone can be truly prepared. Just when you think you’ve had a good day and had some small victories and feeling a little positive along comes someone who has dealt with it to say oh it’ll get harder though
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,499
Kent
Onlookers can`t do right for doing wrong.

If we are fed with `there, there` platitudes we are insulted. If they think they are being realistic it`s too brutal.

The fact is we don`t really want words. A little bit of practical help wouldn`t go amiss but perhaps that is too much to ask.
 

Rach1985

Registered User
Jun 9, 2019
404
Hi there

I'm in a similar boat so lots of sympathy. Mum passed away suddenly last week after a short illness and dad has severe dementia, so I was drafted in to look after him while she was in hospital. She was protective but things were getting too much for her anyway.

In this respect, aside from one "know it all" who is dispensing advice on what I should be doing, all of mum's friends have been really supportive and helpful. Speaking to the "know it all" is really hard work and quite disheartening.

It is SS who are causing the issues. They have agreed dad needs residential care but are continuously attempting to get me to stay here. I live 180 miles away and this is dragging me down rapidly.

I'm even resorting to telling SS I am leaving on a certain day so they will take action. They have duty of care.

Dave
sorry to hear about your mum and the situation now with Social Services. That pressure is always hard and you’re doing the right thing to have a date and stick to it.
I always think it’s hard as you’re always made to feel bad

ah yes the ‘know it all’ I definitely have one of them. every time I see her she asks if Dad has got aggressive yet. I say no and not everyone with Alzheimer’s does and I know nothing is a certainty with this disease. Her reply is oh he will and it’ll be you he takes it out on. Then you have to bite your tongue but you dread seeing them again

I also find when I run into these people they never actually ask how I am! First question is always hows your dad?
Like we’ve stopped existing as people
 

Rach1985

Registered User
Jun 9, 2019
404
Onlookers can`t do right for doing wrong.

If we are fed with `there, there` platitudes we are insulted. If they think they are being realistic it`s too brutal.

The fact is we don`t really want words. A little bit of practical help wouldn`t go amiss but perhaps that is too much to ask.
I suppose this is the problem and so now I just try to avoid seeing them at all. When I walk my dog I don’t walk the streets they live on and I go at strange times. Essentially actively avoiding them
 

Duggies-girl

Registered User
Sep 6, 2017
1,927
I got a bit fed up with being told how wonderful I was doing and to just keep on doing what I was doing because dad was doing so well and that was all because of me apparently. I felt like it was killing me and what I wanted to for someone to offer me some help or at least ask how I was coping.
 

kindred

Registered User
Apr 8, 2018
2,457
This is very interesting. The first person to do the it will get worse to me was the diagnosing doctor. Eventually I became the local object of pity in the street as neighbours saw me taking Keith for a walk. They looked out of their windows. One did stop us and say he is getting so think aren’t you feeding him?
Then when things became so ghastly that Keith needed a nursing home, I got he won’t live long In there ...they never do .,,.
oh Lordy. Things don’t change. Back in the 1960s when my mum was severely disabled with MS we had the first adapted mini van with adaptations so the wheel chair could go straight in and mum could look out of the windows.
From the very first outing, every time we stopped where there were people, the van was soon surrounded by them, staring in and banging on the windows. it was never worth it for poor mum and we got rid of the van.
Oh yes, offers of help would have been so so Good. Warmest, Kindredx
 

Pepp3r

Registered User
May 22, 2020
30
Everyone's opinion of what would be helpful is different ! People would pull me aside and say, ' if you ever want to talk just come over, you know where we are ' I would think No that's not what I need, what would be nice is if you just said hello to mum and passed a bit of time with her like you used to. sorry, I know how that sounds ....
 

Rach1985

Registered User
Jun 9, 2019
404
I got a bit fed up with being told how wonderful I was doing and to just keep on doing what I was doing because dad was doing so well and that was all because of me apparently. I felt like it was killing me and what I wanted to for someone to offer me some help or at least ask how I was coping.
yes I feel like I never get asked how I am. I know it sounds selfish but when someone says hello how’s your Dad it feels like ok what about me too? And yes some days I feel dead on my feet and then get told it’ll get worse you just feel so flat
 

Rach1985

Registered User
Jun 9, 2019
404
Everyone's opinion of what would be helpful is different ! People would pull me aside and say, ' if you ever want to talk just come over, you know where we are ' I would think No that's not what I need, what would be nice is if you just said hello to mum and passed a bit of time with her like you used to. sorry, I know how that sounds ....
yeah you’re right everyone does want something different. And you’re right people barely even speak to my dad anymore and he can still talk about things like the weather or general things and I find when someone does speak to him they shout! He’s not deaf!!
I know I’m sounding like everyone should be understanding and know exactly what I need, just gets me down when it feels like people go out of their way to say it’ll get worse
 

Vitesse

Registered User
Oct 26, 2016
210
i know how you feel! Yesterday, one of my friends seemed to be telling me how much better it was to have my husband at home rather in residential care. She has no idea how dreadful it is to have someone here 24/7 who doesn’t know who I am, can’t communicate at all, and is totally dependent on me. Lots of well intentioned neighbours will say they they are there if I need them, but nobody comes to see if they could actually help by talking to my husband and giving me a half hour off!!
 

RaggyK

New member
Nov 20, 2019
4
Exactly well said. My mum got quite fed up with one friend coming to see her and then standing outside her house. I said its because of the "virus" but mum forgets and this upsets her.
 

MrsChristmas

Registered User
Jun 1, 2015
173
Onlookers can`t do right for doing wrong.

If we are fed with `there, there` platitudes we are insulted. If they think they are being realistic it`s too brutal.

The fact is we don`t really want words. A little bit of practical help wouldn`t go amiss but perhaps that is too much to ask.
hi there

I agree with that sentiment! when I was tearing my hair out with Mum refusing help from anyone outside her small family mum’s neighbour (who lives nearer than I do) sent a card To mum at the beginning of the lockdown saying she was thinking of mum but couldn’t help as was 70 and self isolating. Mum had a drainage problem with her toilet and we had to have plumber and a skip. Over the weeks I saw the skip being filled up with all sorts of stuff not belonging to mum and even saw said neighbour filling the skip up with her rubbish despite self isolating. I’ve found people love to tell you their stories but don’t offer practical help. Sickening,
 

Hazara8

Registered User
Apr 6, 2015
486
Dad is in middle stages of Alzheimer’s now and he is progressively getting worse and lockdown certainly hasn’t helped. In the past few weeks I’ve seen 3 different people who know about my Dads diagnosis when I’ve been walking my dog. They are neighbourly shall we say and a little nosy but all around good kind people who I know if they saw Dad confused or wondering they would help him. But all 3 have said it will only get worse Rachel, it won’t get any easier. And when I say yes I know (I’m seeing it/living it each day) they all replied oh it will get really bad and you’ll get the brunt end of it. I dunno it’s almost like they take pleasure in telling you if you think your life is **** right now just you wait it’ll only get even crapper.
I don’t get it. I don’t want fakeness or people saying it’ll get easier because I know that it won’t. But why aren’t people more supportive? Saying you’re a strong person Rachel you’ll get through this?
I suppose I’m just feeling like people are expecting me to fail, or they think I’m not sufficient enough to deal with it
Rant over!
Good friends, neighbours and family members especially - all can be well meaning and innocently sympathetic. The reality is of course wholly different. Not just a daily visit, a meeting up on the street, a friendly comment to assuage or suggest or endorse, whatever -- none of this relates to your direct, minute by minute association and interaction with the loved one who is stricken with dementia. None of that addresses the anxiety, the stress the actuality of what you are living each day and night. Much of which can be as destructive as personal physical injury in the way it affects both heart and mind. And even professional clinicians cannot truly relate to the fractured relationship which is governed by a disease in progress which remains a mystery, and which challenges the Carer to adopt a sense of understanding verging on sainthood when the demands placed upon him or her become nigh on unbearable. So this is not simply the " looking after" a person and the application of medication, personal care, sustenance and moments of leisure. This is something quite different. The depth of which, if TRULY known by all those who offer advice, pat statements, surefire methods to resolve issues, black and white 'diagnosis ' or what is perhaps worst of all - criticism - would eliminate the whole unfortunate factor in this debate. Simply because the reality is so profoundly life-changing that all of the other seems superficial even when sincerely offered, else trite and irrelevant when pronounced with surety and quite obvious ignorance as to the " reality " of what you are living each and every living moment. Fortunately, that "reality" finds expression and perspective here, often coupled with tears and the cries from the heart. The authenticity of which outweighs the other, profoundly and eminently so.
 

White Rose

Registered User
Nov 4, 2018
671
Just adding my twopenneth. My feeling is that the PWD and their full time carer (whether daughter, son, wife, husband, partner or whoever) become invisible to the outside world - or the outside world wishes us to be invisible. We are an embarrassment because the PWD doesn't behave rationally, there is fear of their behaviour and people don't speak to them because they think the PWD can't understand them. They wish the carer to be invisible because of pity, maybe guilt that they aren't doing anything to help..... Who knows but I'm pretty sure when it's a person with cancer everyone is falling over themselves to help, but when it comes to dementia even most GPs aren't interested.
 

DaveCr1968

Registered User
Jul 5, 2020
43
Just adding my twopenneth. My feeling is that the PWD and their full time carer (whether daughter, son, wife, husband, partner or whoever) become invisible to the outside world - or the outside world wishes us to be invisible. We are an embarrassment because the PWD doesn't behave rationally, there is fear of their behaviour and people don't speak to them because they think the PWD can't understand them. They wish the carer to be invisible because of pity, maybe guilt that they aren't doing anything to help..... Who knows but I'm pretty sure when it's a person with cancer everyone is falling over themselves to help, but when it comes to dementia even most GPs aren't interested.
Hi there

I think I'm lucky in respect of dad's GP. He has been incredibly supportive and has given me tips on how to deal with SS. Much like the excellent advice on here, he told me to give a leaving date (I live 180 miles away and am here temporarily), make it unambiguous and stick to it. He also told me to remind SS of their legal obligation of duty of care of a vulnerable adult. He also accelerated the latest assessment.

Dave
 

Whisperer

Registered User
Mar 27, 2017
150
Hampshire
Hello

i have read through this thread and would like to offer a few heart felt observations which may help others. I stress they are based on being a sole carer, with no partner to talk to daily, isolated with my dear mum who is not as she was bless her. As others have stated caring for a loved one with Dementia is physically and emotionally demanding, isolating, stressful, unpredictable, etc. In short an internal emotional washing machine, set on unpredictable cycles. We all know the problem so enough said there. So how do we deal with the outside world.

1) Always realise your best friend is yourself. Easier said than done. I always check in for an internal chat upon waking and when I go to bed. During the day when I feel anxiety or frustration developing. Give yourself some praise, pat on the back, acknowledge any new skill or information you pick up as you move through the day, etc. ALWAYS ALWAYS remember you are part of the solution not the problem, no matter what is said by unknowing others. None of this is the first sign on mental degeneration, just you being your own best friend. Costs nothing and I find really helps.
2) Now let’s consider the real professional know alls. Be selective in your use of “advice, knowledge or wisdom” given to you by others, well meaning or not. Would you accept guidance from a tapping window blind, from a drunk, from a child aged 3 years, from a person with no knowledge of the problem you are confronting in any field, let alone Dementia. When you are next given some utterly useless advice from a know all, do not bite your tongue, etc. Just smile and say thank because internally you will be chuckling. You are so far off beam matey, think you know it all based on a conversation down the pub, or what your pompous over inflated opinion of yourself tells you what you would do. It is laughable how out of touch you are. Smile outwardly but really chuckle internally. I will dine on this idiot for days in my mind, in moments when things get tough. Better than even Billy Connelly.
3) Now let’s consider the “well meaning” people. When they ask how your loved one is always answer “yes WE are doing well, thank you for asking”. It will only get worse. “Thank you. As a rule I take one day at a time, deal with the problems of today, prepare as best I can for what is to come. None of us can be sure what is in our own futures.“ I tend to find that last point wipes away any smugness, introduces a better sense of equality in the conversation. You might lose a few “friends”, but put bluntly what were they positively bringing to the party. They know the problems you face in general terms. If there is no offer to help at any level all they were was an echo chamber of your worse fears and nothing more. Better one real friend and helper than an army of “I saw you, could not avoid you, so I am now trying on my neighbourly act, whereby I am in control of this conversation, I have only passing interest in”. If you think me harsh just ask what are they really doing? Truely out to help you and your loved one or..........

In summary from day to day sole carers for loved ones with Dementia are isolated, lonely, not in great shape emotionally and some physically. We have a limited budget of strength, maintained by an often overworked dynamo. In those circumstances why waste precious resources on people who through smugness, lack of understanding or knowledge, etc, just bring you down or make you feel invisible. Laugh internally, answer directly when asked a question, save your energy for better uses. That advice could also help carers with better family or partner support mechanisms, they to have those darker moments, those internally scream moments.

As I say just a few best meaning thoughts to ponder. Wishing you all well. Now I am off down the pub to get myself topped up with well meaning advice on building my own nuclear reactor in the back garden. There again.......