Feeling lost lonely and angry over other people reaction

[deepetshopboy]

just that really nobody to talk to my partner doesn't understand he listens but trys to lightn the mood and joke or just says nothing
My dad has dementia and im lonely confused angry by the heartbreaking heartless reaction of humans hes lost most of his so called friends well the ones that are still alive 1 of them ripped him off out of hundreds of pounds no evidence so i cant go to the police and another was a childhood friend who suddenly just told him not to call at his home anymore its really stopped my faith in humanity ive had to change doctors twice with him because of the doctors lack of caring understanding or patience one doctor even yanked hes arm out of frustration because he was trying to explain to her hes ceasing to be treated like a human being on a daily basis .im annoyed with so called family who make assumptions and havent the first idea what im going through yet ring to give me their opinion!!! If they bother ringing at all we both have been dropped like hot potatos i spend my life sticking up for my dad in every way its draining and its making me resentful i get annoyed and jealous when i hear annd see people in their 60s swanning off on holidays enjoying their life with not a care yet my dads so ill i also get annoyed when i have eople likemy neighbours horrible dreadful moany nasty people and i think ehy the hell cant you get dementia why my lovely dad .sorry for rant ...

 

[deepetshopboy]

And bad spelling !!!

 

[Amethyst59]

No need to apologise for the rant...or the spelling! When I’m angry punctuation goes out of the window. I am sorry you are feeling so alone...but that is exactly why this forum is so helpful. It is somewhere we can all let off steam and have a good moan. And if you have any specific questions, this is the place to get them answered. There are many people here, who are in just your situation, so when someone says, ‘I know how it is’, they really do.
Keep posting...it really does help.

 

[Philbo]

Hi

Your dad is very fortunate to have you caring for him, so you should be proud of yourself.

You are not alone in having to deal with the emotions that seem part and parcel of caring for someone with this terrible condition, as Amethyst59 has said. Frustration, anxiety, loneliness, envy, heartbreak - the list is endless and it certainly doesn't help when you're faced with people to either don't understand, don't care or both or just want to interfere?

When my wife first started showing the signs that all was not well, I knew I had to develop some sort of alternative social life for us both. Longstanding depression and anxiety issues, brought on initially by very bad post-natal depression meant she had never been one to socialise much. So I managed to get her to start going down one of our local pubs.

So for everyone of the so-called friends (and some relatives) who've "disappeared", we;ve been able to more than replace by meeting some great new friends. The "pub-lot" are really a life-saver, especially for me, doing their best to keep my wife involved whilst keeping my spirits up too.

Sure, I too can get very envious when they're chatting about where they've been, or going. Some have even suggested that we go with them - "we will help you look after her" - but I know it's beyond practical now, so I politely decline their lovely offers. I am, though, considering some respite care for my wife this summer, so I can get away for a week (very daunting though).

Please keep sharing your thoughts, worries, even rants, as it really does help.

Best wishes.
Phil

 

[LynneMcV]

Hi @deepetshopboy, I am so sorry to hear you are going through this.

Over the years I have come to see that a diagnosis of dementia does bring out the best or the worst in people. The former turn out to be absolute diamonds that enrich our lives and the latter are people we find we can soon do without, even if we once thought they were good friends.

My heart used to break when I became aware of the negative attitude of others towards my husband - the rude customers who used to insult him for being slow when he carried out charity shop work to keep himself busy in the early days; the so called 'friends' who formed a tight circle with their backs to him, pretending they didn't know he was trying to talk to them at a funeral of a close colleague - I could go on...

My husband will be six years into diagnosis (come May) and the false friends, abusers and users are in the dim and distant past. There has been a lot of disappointment and hurt during that time, but we have emerged with a much stronger circle of friends and family that are a pleasure to know and have around. I am sure you will find the same, but it takes time.

I have often heard it said on here that we go through a grieving process for our loved ones with dementia while they are still living. Anger is part of that grieving process. My father died very suddenly and unexpectedly a few weeks after his 60th birthday having never shown any sign of having a health problem and your post brought to mind how I, like you, would look at other people, often those who were much older, extremely ill and in great pain, and feel that it should have been them, not my lovely, active, vibrant dad who had just become a grandad for the second time and was looking forward to enjoying a much deserved retirement.

These are natural thoughts during the grieving process and I fully understand why you are going through similar at this time.

You will come through it though -and you will come through everything that a dementia diagnosis of a loved one throws at us - because the people on TP truly do understand where we are at at any given time, and we can vent without judgement here.

 

[Dayperson]

I'm sorry to hear what you're going through. Sometimes people just simply cannot accept and cope with seeing the person they know go though an illness.

Maybe your so called friends / family haven't an understanding of the illness. Have you found some resources on the site or internet to educate them?

I had my aunt on my dads side say I was taking mums side (mum has dementia and Alzheimer's but I know she has hated mum since they got married) and I have stopped all communication with her.

Mums sister went to see my great-aunt who had Alzheimer's and dementia and my great-uncle said she only stayed a few days and tried to take her aunts ring and stormed off when she couldn't have it.

 

[marionq]

What sad posts above. To be let down by comparative strangers is one thing but to feel let down by those who should know better is very painful emotionally. Most of my husband's friends and family have already died but we have had one distant relative who scammed him for many hundreds of pounds. This has now been dealt with thanks to the police but it leaves a nasty taste and uses up a lot of head space.

On the whole I find neighbours, shop workers, doctors, dentists etc extremely helpful and sympathetic when I mention that John has Alzheimer's. I don't make a big thing of it but I see no reason not to mention it if it seems relevant. Bus drivers are then more patient for him getting on and off the bus, young mothers then smile when he talks to their babies in their prams, neighbours then understand why he doesn't know who they are even though he talked to them half an hour ago.

Anyone who is openly hurtful or impatient isn't worth knowing.

 

[Kikki21]

My mum doesn’t have that many friends left. A lot have already passed over. Many people haven’t the first clue about dementia, a lot are afraid of it so if you feel your partner isn’t supportive enough then maybe you need to sit down with them & tell them what you have written down here & how you feel. They may feel that joking around will lighten the mood but clearly it isn’t helping you.

I’ve been stabbed in the back by the family, someone reported me to social services, the same people have been trying to scam & make money out of my mum, I have another cousin making snide remarks to me - those kind of people can all jog on!

 

[jaymor]

Our best friends came from my husband having dementia. His CPN set up a group for early onset of dementia and we met three other couples, all four husbands having dementia. We all went for coffee and a natter whilst the men attended the group. We all went to the same monthly dementia cafe too. Then as funds were removed their group had to finish but we decided that we would continue by ourselves so went out for the day as a group, went to each other’s houses for lunch, just kept the group going.

One couple moved leaving three of us. Fast forward 10 years and two of us have lost our husbands. We now still have days out together at least once a month, we still go to the cafe once a month and we holiday together. Luckily the one friend who has her husband has more than adequate cover for her husband from day care to three children more than happy to look after Dad. Having adult children still living at home has advantage.

The best friends are dementia friends, they have understanding by the bucket load and that’s what we need when dealing with dementia, loads and loads of understanding.

 

[Mudgee Joy]

Yes I agree with Jaymor- ask about any local carers group and see if you can start up a friendship there - they will be understanding and really pleased to meet another in “the same boat “.
The unhelpful “friends” who don’t understand and offer useless advice will fade away - let’s face it one good friend is worth more than a zillion of the other kind

 

[Frankyt]

It is a lonely world caring for someone. My biggest upset has been how family have treated mum and myself. She is difficult and aggressive at times, so some have decided that she is too difficult to deal with (but it is ok for me to do it).

I've got to the point now were I stop trying with people. That way they can't annoy or upset me and instead I focus on the good I'm doing and getting support from other people who DO understand.

Contact Carers Support for an assessment if you haven't had one already. Social services have also been a great help. It took a while to get them involved but eventually I broke down on the phone and they realised how desperate I was for help.

You are doing an incredibly difficult job and it needs good natured, understanding individuals to look after those we care for. Get as much help and support as you can and you really need to forget about the others otherwise they will eat away at you.

 

[yak55]

just that really nobody to talk to my partner doesn't understand he listens but trys to lightn the mood and joke or just says nothing
My dad has dementia and im lonely confused angry by the heartbreaking heartless reaction of humans hes lost most of his so called friends well the ones that are still alive 1 of them ripped him off out of hundreds of pounds no evidence so i cant go to the police and another was a childhood friend who suddenly just told him not to call at his home anymore its really stopped my faith in humanity ive had to change doctors twice with him because of the doctors lack of caring understanding or patience one doctor even yanked hes arm out of frustration because he was trying to explain to her hes ceasing to be treated like a human being on a daily basis .im annoyed with so called family who make assumptions and havent the first idea what im going through yet ring to give me their opinion!!! If they bother ringing at all we both have been dropped like hot potatos i spend my life sticking up for my dad in every way its draining and its making me resentful i get annoyed and jealous when i hear annd see people in their 60s swanning off on holidays enjoying their life with not a care yet my dads so ill i also get annoyed when i have eople likemy neighbours horrible dreadful moany nasty people and i think ehy the hell cant you get dementia why my lovely dad .sorry for rant ...

What a very sad and frustrating post. I truly understand your pain and if I can help
you with the following suggestions I’ll be pleased.
I’ll list some suggestions, it will be easier
An Admiral nurse will support you. She/he would be able to accompany you to appointments.
The carers helpline too.
Change your GP there are good ones out there.
Try and let the past theft from
Your dad go.
Family and friends who are not supporting you are not worth your time. Just be polite and listen then forget them until the next time.
Your time will come to do what you want to do but at this point in time you are doing a fantastic, unselfish wonderful thing that you will not regret doing someday even though you feel helpless now.

I am 62 and I’ve been looking after my Mum in some way or another for all of my married life to enable my Dad who passed in August to play golf etc. Mums always been needy. Our ruby anniversary is on Sunday. My husband who
Is 61 took early retirement to help
Me care for mum and our dreams of holidays, popping out here and there, having the grandchildren more have all evaporated into thin air. At the beginning of this journey, mum moved in in July, I felt resentment, fear, lonely, frustration, anger, lonely etc.
It’s taken months to accept our situation, a situation I hate, a situation that has changed us so much but you can’t let it, you have to carry on.
We too have people who say they will
Visit mum but don’t, I don’t worry about this anymore. I have a sister but she isn’t around much, doesn’t ask after mum and isn’t any help.
My whole being is Mum
My husband is 61. My son has a family and his own business and my daughter disowned us 12 years ago.
Mum
Is on memantine which helps her behaviour and in the last week has a small amount of an antipsychotic which has meant a few good nights sleep!
When you’ve got some professional help. A decent Gp and maybe something for yourself, I’m on 100mg sertraline for anxiety, you will slowly feel
In control. He resentment will still
Be there, the fear and feeling of helplessness will tear its ugly head too but with help I hope that you will be able to cope better for your sake and your dad who never asked for this evil disease.

I hope I’ve helped.
I hope I’ve given you hope and I hope I haven’t upset you (I’m not reading it back, it came straight from
My heart) x

 

[love.dad.but..]

Before mum died she described how life had become with caring for dad...'dull and isolating' I went round every week to help and chat. She wasn't being unkind to dad it was matter of fact dad had lost interest in going out to many places. They didn't have many friends and were fine just the two of them pottering along with their own interests. I then lived with dad for 10 months and apart from the dementia challenges I totally saw what she meant. I wonder though with friends or relatives who drop off the radar...as much as I don't understand why they would do it...maybe they feel they would be scared by what they see as many of us sadly may get dementia and they don't have to confront their own feelings and just don't know how or if they can help .... I know I am very different to that but my 2 sisters are like that

 

[nae sporran]

Just adding to great advice and support already offered. I've started just agreeing with OH's daughter when she forces advice from afar and then doing what I think is best regardless. I think doesn't make up for lack of support, but you have to do what you feel and TP will give you so much of both, aswill carers centres.