Nearly time

JRB4040

Registered User
Feb 21, 2008
6
0
Croxley Green, Herts
Hi, I think the time's running out for my mum. She's had dementia for 11 years and has been in a home for nearly 6 years and she's asleep for most of the time now. She was only 69 when she was diagnosed but is going to be 80 tomorrow. Unfortunately I had a stroke 18 months ago making the 280 mile journey impossible unless my husband takes the time off from work, but she doesn't know me and certainly doesn't talk to me. It's so sad. I just wanted to share it with you.
 

MeganCat

Registered User
Jan 29, 2013
358
0
South Wales
Im so sorry for your situation - made harder being so far away. I can't offer any advice - my mum is not as advanced yet - I just wanted to send a virtual hug x
 

wimbledon7

Registered User
May 27, 2007
29
0
england
Sorry to hear that too. My wife is only 58 and has had Lewy body dementia since she was 51. She also sleeps a lot with her mouth open but still recognises us. She can no longer walk and she also has Parkinson's.
 

Pigeon11

Registered User
Jul 19, 2012
351
0
Hi

I'm sorry to hear about your Mum and for you too as this situation is making you sad. It must be very difficult trying to get to visit etc living all that distance away.

My situation is similar to yours in that dad has had dementia for about 12 years but not formally diagnosed till about 8 years ago. He started at around 67 and is 79 now. He has been in residential care for about 8 years.

Like your Mum, he sleeps much of the time. He can't walk, talk, see very well, is unaware of is surroundings, doesn't recognise or even acknowledge anyone, can't sit up and is doubly incontinent. His arms and legs are contracted and he suffers from pressure sores. The worst thing is his swallowing mechanism is deteriorating and despite pureed foods and thickened drinks he coughs and chokes on his meals. He's been like this for about 4 years and is very gradually getting worse, but when I ask how long he can go on like this, I'm told he's fine! In fact one carer told me he could go on like this for years to come yet. Everything I've read says that this illness is very unpredictable and I have become quite distressed by this limbo-state where he's neither alive, nor dead.

If I'm honest the thought of this going on much longer leaves me in despair. He has no quality of life at all and it doesn't seem fair on him.

But at least I am fortunate that I don't have any health problems or live a long distance away so I'm able to visit him quite regularly. I do understand how difficult this stage of the illness is though and I really do sympathise.

Sending you hugs and hoping you get lots of support by posting on here.

xx
 

cragmaid

Registered User
Oct 18, 2010
7,936
0
North East England
Hello, It is indeed terribly sad, and unfair and even blo*dy mean!!!!
You feel upset because your health means you cannot visit your Mum on her birthday even though you know she wouldnt miss you or recognise you if you were there. This only goes to prove that distance is no bar to love.
Be at peace, you have done your best.
Take care and come back to visit us soon....you don't have to struggle with traffic to visit here.:D
 

fullmoon

Registered User
May 22, 2013
331
0
Dementia is a terrible disease but seems harsher still when affecting people in their 50's and 60's :(. I do so hope research makes a breakthrough soon to spare others this torturous journey.
 

angecmc

Registered User
Dec 25, 2012
2,108
0
hertfordshire
So sorry for you and your family. Just because you can't always be there in person doesn't mean you are not thinking of your Mum, you clearly love and care for your Mum dearly, sending you hugs (()) xx

Ange