First time I'm not joking about it

[Catkin26]

First time today I actually stopped laughing about my mums situation, us 3 girls always joke about mums dementia to get through it. After visiting my mum and having to show her how to make a cup of coffee it finally hit home that things are only going to get worse. I feel like I have lost my mum already. I have tried to talk to my sisters but they are not forthcoming and my dad passed away over 14 years ago. How do you cope with the feeling like your parent is reverting to a child? many thanks

 

[Maryland]

First time today I actually stopped laughing about my mums situation, us 3 girls always joke about mums dementia to get through it. After visiting my mum and having to show her how to make a cup of coffee it finally hit home that things are only going to get worse. I feel like I have lost my mum already. I have tried to talk to my sisters but they are not forthcoming and my dad passed away over 14 years ago. How do you cope with the feeling like your parent is reverting to a child? many thanks

Hi catkin26 - I came in here to try and find relief tonight. My husband had dementia for 6 years now and the last couple of months I have had to treat him like another child. It is hard and something you don’t get used to - you just do it. My husband has been wandering tonight since 5pm and will be like that till I finally go to bed. He keeps saying it’s time I went to bed but it’s the only time I have peace. He now can’t find anything or rooms in the house. He locks up at 4pm, doors gates windows and blinds and them keeps asking me every half hour is such and such locked. Your very welc9me in this site - I don’t come on every day but only when I am feeling a bit down like today but at least we have someone to talk to, you are not alone as we sometimes feel like we are. Take care and take every day as it comesXxx. At least we all have good memories. X

 

[Cazzita]

Hello, it's horrible watching my mum turn into a child but what can we do but be there and try and collect some good memories along the way. Heartbreaking though. Sincere sympathy for what you are going through right now. Take care x

 

[YorkshireLass]

First time today I actually stopped laughing about my mums situation, us 3 girls always joke about mums dementia to get through it. After visiting my mum and having to show her how to make a cup of coffee it finally hit home that things are only going to get worse. I feel like I have lost my mum already. I have tried to talk to my sisters but they are not forthcoming and my dad passed away over 14 years ago. How do you cope with the feeling like your parent is reverting to a child? many thanks

I think initially it's how we cope and keep trying our best to keep our loved one "normal". There is no doubt you can't outrun this disease and the sadness it brings is all consuming and overwhelming. You learn how to cope and some days you manage it xxxxxx

 

[Witzend]

You can always offload here, to others who know what it's like!
Other than that, you just get on with it, really - there's no other choice.
Having said that, I did eventually find that my 'child mother' became the new 'normal', but then my mother did have dementia for a very long time.

 

[Margo22]

First time today I actually stopped laughing about my mums situation, us 3 girls always joke about mums dementia to get through it. After visiting my mum and having to show her how to make a cup of coffee it finally hit home that things are only going to get worse. I feel like I have lost my mum already. I have tried to talk to my sisters but they are not forthcoming and my dad passed away over 14 years ago. How do you cope with the feeling like your parent is reverting to a child? many thanks

It’s so hard, and you have my sympathy, Catkin26.
Same as you, my dad passed a long time ago and I’ve been mum’s only carer for more than 13 years. Over the last 18 months her dementia has increased rapidly, and she was phoning me all the time crying, though I never knew what about. Her behaviour became increasingly erratic and she thought people were breaking in,every night and stealing things, as well as other more unpleasant behaviour. And like you I stopped thinking it was funny.

I noticed my reaction to her was becoming less tolerant and I ended up hating her. For me there was a final straw when she did something that really upset me and I decided to cease caring for her. I know that sounds harsh and I’d never even dreamed that I would ever not love her, but one day I realised that I was searching for ways to kill myself, and a mental health rapid response team had to intervene. By now she was in hospital and I informed the rest of my family that she was now in the charge of the social worker, who would decide what would happen to her when she was discharged. The response from the family was amazing; suddenly they realised what she was like and started taking responsibility.

I’ve not seen mum for 3 weeks now, but she is being well looked after and will be going into a lovely care home soon. I don’t love this person who inhabits what’s left of Mum’s body and don’t feel any responsibility for her. My lovely, lively, funny mum has gone and I’ve had to face up to that.

Perhaps you see more of your mum than your sisters and if that’s the case her true condition may not be as obvious to them. Could you let them do more/be with her more? I’d hate anyone to be in the situation I ended up in. Share responsibility with as many people as possible because maybe that way you’ll find it easier to cope with the childlike behaviour when you do see her.
Sorry this has been such a long response.

 

[Catkin26]

thank you for replying, I feel for you, your situ is much worse than mine although mum didn't know who I was when i visited her today

Hi catkin26 - I came in here to try and find relief tonight. My husband had dementia for 6 years now and the last couple of months I have had to treat him like another child. It is hard and something you don’t get used to - you just do it. My husband has been wandering tonight since 5pm and will be like that till I finally go to bed. He keeps saying it’s time I went to bed but it’s the only time I have peace. He now can’t find anything or rooms in the house. He locks up at 4pm, doors gates windows and blinds and them keeps asking me every half hour is such and such locked. Your very welc9me in this site - I don’t come on every day but only when I am feeling a bit down like today but at least we have someone to talk to, you are not alone as we sometimes feel like we are. Take care and take every day as it comesXxx. At least we all have good memories. X

 

[Grannie G]

mum didn't know who I was when i visited her today

It may not be permanent @Catkin26. Your mum may know you tomorrow or if you visit at a different time of day.

 

[malengwa]

It's tough, it's painful, and I never got used to the fact that each time I saw mum, it was Lilley to be the best she would ever be. The complete reverse of childhood where you see babies learn new skills each time you see them. With dementia, they have lost another skill each time, certainly that was my experience anyway.
My brother's wre hopeless and my dad was main carer for mum but really struggled so I was his crutch really.
Somehow you just do get on, you don't think you can, but you do. My mum had to go into a home and yes the guilt I felt was overwhelming at the time but it was the right decision.
I think humour is often how we cope, we still have lotslof honour about things mum did, a year after she died. I found the honour was interspersed with overwhelming sadness at what was happening to her.
There are always people here who can listen when you need it. People who gave gave there, people still there and people at early stages. You take care now x

 

[BP1981]

I feel like i'm in the same position. I live at home so see my dad on a daily basis. My brother has stayed over for nearly the past 2 weeks (as he lives in London) and he has been amazing!! Taking my dad everywhere, helping him going to the loo etc.
However I feel like my other siblings just don't get it. They only see him once a week and I feel like i'm the only one that actually cares. I know they do but they've never once taken him anywhere to give my mum a break.
Sorry rant over!

 

[Banjomansmate]

Sometimes family members don’t want to see and accept the decline that leaps out at you. My friend’s daughters know their father has dementia and I e-mail them with regular updates on what has been happening to him so that they know how he is but I think they think i’m always criticising him or denigrating him. When they came to see him last June they were laughing and thinking he was being deliberately funny when he was trying to put a paper handkerchief box on his foot instead of a shoe. It wasn’t helped by the fact that he wasn’t wearing his glasses and when I started looking for them their reaction was that Dad “was fine”, it didn’t matter if he wasn’t wearing glasses because “We cannot police him when we are not here so it doesn’t matter if he doesn’t have them now”!
A month later he was in hospital and hallucinating, seeing penguins, but according to one of them that was Dad deliberately making people laugh.
I despair of them sometimes!

 

[Sirena]

Sometimes family members don’t want to see and accept the decline that leaps out at you. My friend’s daughters know their father has dementia and I e-mail them with regular updates on what has been happening to him so that they know how he is but I think they think i’m always criticising him or denigrating him. When they came to see him last June they were laughing and thinking he was being deliberately funny when he was trying to put a paper handkerchief box on his foot instead of a shoe. It wasn’t helped by the fact that he wasn’t wearing his glasses and when I started looking for them their reaction was that Dad “was fine”, it didn’t matter if he wasn’t wearing glasses because “We cannot police him when we are not here so it doesn’t matter if he doesn’t have them now”!
A month later he was in hospital and hallucinating, seeing penguins, but according to one of them that was Dad deliberately making people laugh.
I despair of them sometimes!

Good grief, that is taking denial to a whole new level!

 

[kindred]

Sometimes family members don’t want to see and accept the decline that leaps out at you. My friend’s daughters know their father has dementia and I e-mail them with regular updates on what has been happening to him so that they know how he is but I think they think i’m always criticising him or denigrating him. When they came to see him last June they were laughing and thinking he was being deliberately funny when he was trying to put a paper handkerchief box on his foot instead of a shoe. It wasn’t helped by the fact that he wasn’t wearing his glasses and when I started looking for them their reaction was that Dad “was fine”, it didn’t matter if he wasn’t wearing glasses because “We cannot police him when we are not here so it doesn’t matter if he doesn’t have them now”!
A month later he was in hospital and hallucinating, seeing penguins, but according to one of them that was Dad deliberately making people laugh.
I despair of them sometimes!

I think that some of the declines lead to such bizarre behaviour (like the handkerchief box on foot) that unless you know things like we do, people just cannot connect, hence thinking it is funny and deliberately joking. I came home from work one day to find my OH coming to meet me (locked out) with pants on head like a hat. He had drawn quite a crowd of laughing folk. Huge hoot.
with love and sympathy, kindred.

 

[KAJ]

First time today I actually stopped laughing about my mums situation, us 3 girls always joke about mums dementia to get through it. After visiting my mum and having to show her how to make a cup of coffee it finally hit home that things are only going to get worse. I feel like I have lost my mum already. I have tried to talk to my sisters but they are not forthcoming and my dad passed away over 14 years ago. How do you cope with the feeling like your parent is reverting to a child? many thanks

My parent / child relationship with my mum has been that I (and my 2 sisters) have been the parent for some time now. It happened gradually but it's how I describe our relationship to people I want to understand. It's not a nice feeling and it makes me cry sometimes. I can see things getting worse with my mum too but even given that we can still have a laugh together and the fact that we did so yesterday made up for all the grotty things that happened.
Big Hugs,
KAJ.

 

[Liz1977]

Think I've reached that point with my mum today. It's just wicked xx

 

[Sarahjane1967]

I think that some of the declines lead to such bizarre behaviour (like the handkerchief box on foot) that unless you know things like we do, people just cannot connect, hence thinking it is funny and deliberately joking. I came home from work one day to find my OH coming to meet me (locked out) with pants on head like a hat. He had drawn quite a crowd of laughing folk. Huge hoot.
with love and sympathy, kindred.

My sister is finding it difficult to deal with Mum having dementia. Sis often suggests that Mum is ‘doing it on purpose’ and that there is nothing wrong with her. Mum now lives with me as she can no longer be on her own. My only break is when mum spends a few hours at my sisters house which is getting to be a rarity as sis doesn’t cope very well.

 

[Malalie]

SarahJane Could your sister come over for an evening or overnight or a weekend to stay at your house with Mum and just do the routine things that you do together with her - it would be nice if you could have a break. She wouldn't have to do anything spectacular - just be there really.

When an elderly relative develops dementia I don't know why people suddenly have to try and make their lives better by taking them out to do unusual things and have treats all the time. I believe that if you are feeling old and a bit confused, a quiet routine would be better, and people visit you....for a short time...

Could I ask if you and your sister have a Power of attorney for Mum at all? It could help if you need extra care.

 

[SleeplessinNM]

Hello, it's horrible watching my mum turn into a child but what can we do but be there and try and collect some good memories along the way. Heartbreaking though. Sincere sympathy for what you are going through right now. Take care x

I too am visiting the site tonight so that I know I am not alone. My mother has advanced dementia and we are trying to care for her at home between 3 of us. We are all struggling and now looking at getting extra care in at home We already pay private carers so that we can get a break, but it is no longer enough.
As you say you just get on with it.
My only suggestion is make as many good memories as you can and take lots of photos so you remember those good times when the going gets tough. . Also, make sure you have something you enjoy doing for yourself and do it as often as you can. Best of luck!!

 

[Cazzita]

I too am visiting the site tonight so that I know I am not alone. My mother has advanced dementia and we are trying to care for her at home between 3 of us. We are all struggling and now looking at getting extra care in at home We already pay private carers so that we can get a break, but it is no longer enough.
As you say you just get on with it.
My only suggestion is make as many good memories as you can and take lots of photos so you remember those good times when the going gets tough. . Also, make sure you have something you enjoy doing for yourself and do it as often as you can. Best of luck!!

To you too xx