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any ideas about what to do to cope when its all too much

muriel67

Registered User
Apr 10, 2014
44
I am wanting some ideas about how others cope who have early onset dementia.I am 58 and have vascular dementia.Really im just asking how people cope when stressed out from trying to not rock the boat and yet still managing to.What works for you.
 

AlsoConfused

Registered User
Sep 17, 2010
1,953
Life's really ****ty sometimes. Muriel, you're doing your best to cope when you must be feeling terrified about the future. You're impressively selfless and courageous about trying to protect your terribly stressed daughter and to avoid adding to her burdens. In the same situation I'm sure I wouldn't be as brave and loving as you are.

I can't think of anything that might help you cope even better than you already are.

All I would suggest is that simply letting time pass will help. The most frightening time for the person with the disease and for the people who love them seems to be the start of the disease, when everything is new and no-one knows how they'll cope. Later on, we find out from experience that ordinary life does go on, there are still joys to be had as well as new challenges to be managed.

I hope you and your daughter will soon start to feel safer and more at peace as you both come to terms with the unwelcome life change you're facing.
 

Barry

Registered User
Oct 14, 2006
1,898
73
Indonesia
Hi muriel67

I was also diagnosed at the age of 58 with Mixed dementia (Alzheimer's, LBD, and Parkinson's, which is now just over ten and a half years ago. I know it can be very stressful at the beginning of our illness and trying to come to terms with our new situation but the sooner we can get over that first steeping stone then life can be a bit more easier.

For me the way I coped was to throw myself into working at the computer and writing about how the illness was affecting me the reason for doing this was that I found it to be a way of venting my inner thoughts and fears, and of course by writing her on TP where you will get a lot of support...

Best wishes
Barry
 

muriel67

Registered User
Apr 10, 2014
44
Life's really ****ty sometimes. Muriel, you're doing your best to cope when you must be feeling terrified about the future. You're impressively selfless and courageous about trying to protect your terribly stressed daughter and to avoid adding to her burdens. In the same situation I'm sure I wouldn't be as brave and loving as you are.

I can't think of anything that might help you cope even better than you already are.

All I would suggest is that simply letting time pass will help. The most frightening time for the person with the disease and for the people who love them seems to be the start of the disease, when everything is new and no-one knows how they'll cope. Later on, we find out from experience that ordinary life does go on, there are still joys to be had as well as new challenges to be managed.

I hope you and your daughter will soon start to feel safer and more at peace as you both come to terms with the unwelcome life change you're facing.
Thankyou for your reply,i think I am just going to sit back and take stock of what is happening and just see how things go,It cant hurt can it.But I might just be a bit more vocal when someone chooses to upset me.My daughter is coming over on Saturday so im hoping we can have a proper chat about how shes feeling about things and she can tell me her fears and concerns.Anything to get back to how it used to be.
 

muriel67

Registered User
Apr 10, 2014
44
Hi muriel67

I was also diagnosed at the age of 58 with Mixed dementia (Alzheimer's, LBD, and Parkinson's, which is now just over ten and a half years ago. I know it can be very stressful at the beginning of our illness and trying to come to terms with our new situation but the sooner we can get over that first steeping stone then life can be a bit more easier.

For me the way I coped was to throw myself into working at the computer and writing about how the illness was affecting me the reason for doing this was that I found it to be a way of venting my inner thoughts and fears, and of course by writing her on TP where you will get a lot of support...

Best wishes
Barry
Hi Barry, Thankyou for your reply I have also started using this site more lately its good to know others understand what is happening in my life and share it and not be judged.What I really like is being able to talk and get answers without the
false sympathy people feel they have to give when someones upset,I don't need that just some help to say how it is and some practical tips from others who walk in my shoes.I think my daughter is very frightened of the future because my mom had dementia early ,now I have it so maybe she thinks its her destiny too.She has 4 boys the eldest 18 the others 4,5,12. And the youngest have special needs I think maybe she thinks shes going to be a carer forever.But I would never want her to be my carer im hoping she will talk to me at the weekend and we can work something out.i do love her a lot.
 

Quilty

Registered User
Aug 28, 2014
1,051
GLASGOW
I do admire how you are facing this disease. Just being able to talk it through with your daughter is so wonderful. So many people do into denial and dont talk. What you can do for everyone here is to keep telling your story. We dont get to see it from that perspective as carers. In helping others i hope this also helps you.

Another thought. Have you tried relaxing to a cd? I havr suffered ftom severe stress in the past and use a track of birdsong to contain myself during panic attacks. It cant hurt. Try amazon for single tracks or cds Love quilty
 

AlsoConfused

Registered User
Sep 17, 2010
1,953
Libraries have relaxation tapes too (assuming there's one in your area that's still open!).
 
Last edited:

muriel67

Registered User
Apr 10, 2014
44
I do admire how you are facing this disease. Just being able to talk it through with your daughter is so wonderful. So many people do into denial and dont talk. What you can do for everyone here is to keep telling your story. We dont get to see it from that perspective as carers. In helping others i hope this also helps you.

Another thought. Have you tried relaxing to a cd? I havr suffered ftom severe stress in the past and use a track of birdsong to contain myself during panic attacks. It cant hurt. Try amazon for single tracks or cds Love quilty
Hi Quilty, I had to laugh when I read your reply ,I keep hearing a parrot in my flat and have to go look for it just in case there is one.I cant imagine adding to the menagerie in my head but its good my sense of humour hasn't left me and I can see the funny side.i am going to call in the library and ask about relaxation cds ,so thankyou for the idea.
 

shelagh

Registered User
Sep 28, 2009
476
Staffordshire
It often is too much

What helps me is rest, music - the things I have always loved, audio books again not new things the books I have always loved. Stroking my dog, a hug, looking at pictures of my grandchildren, a shower, a clean nightie, colouring books, a short walk. A cup of lemon tea and a chocolate biscuit.

Love from Shelagh
 

muriel67

Registered User
Apr 10, 2014
44
What helps me is rest, music - the things I have always loved, audio books again not new things the books I have always loved. Stroking my dog, a hug, looking at pictures of my grandchildren, a shower, a clean nightie, colouring books, a short walk. A cup of lemon tea and a chocolate biscuit.

Love from Shelagh
Hi Shelagh, I like the audio book idea I cant read books anymore and it was one of my greatest pleasures ,I will be giving that a go too.Its often just the things we are familiar with that help but in the midst of the stress I get lost and its hard to focus.