totally lost

[Mccluskey]

Where do I start? Is it just me or does there appear to be a lack of support aimed specifically at the offspring of dementia sufferers? I don't know any other person who has a father with late stage dementia and I am really finding it difficult to cope with the emotional challenges. I constantly search the internet looking for answer: why isn't he eating, does diarrhoea mean he's nearing the end etc etc. I know there's support groups aimed at people with dementia and their partners but not are these always in the daytime I would feel out of place if you know what I mean.I've spoken with my gp but he doesn't know my dad. Is there anyone else who is in a similar position?

 

[Shedrech]

Hi Mccluskey
sorry you feel so isolated
my dad's not yet at the same stage, though I appreciate what you mean about the emotional challenge - to be honest, I've found this forum to be the most supportive place to find information from others in similar positions, so do post any particular questions you have
I know other members have gone along to local dementia cafes, for carers and PWD; the carers aren't only spouses and at least one café in my area is in the evening - is there anything in your area?
you might be able to find something here
https://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200121
I chat to the staff in my dad's care home too, they know my dad and me, and have been happy to help with any questions I've put to them
not much help; but much sympathy

 

[Kevinl]

Well on here would be my answer. I can't find a link to the latest survey done on here but I seem to recall that a very significant number of members on here are caring for a parent or grandparent I'm not even sure that caring for a partner are the majority on this forum, look at the number of posts who say mother/father/parent in law.
The issues you mention like eating are pretty universal, how does the relationship matter in that context.
Just so you know I'm on here currently as my wife has AZ but for the last 3 years of her life my mother lived with me and she had an unspecified type of dementia so I've been where you are as a child with a parent with late stage dementia now I'm a partner and the difference is...?
Many on here have done the parent and moved onto the partner sometimes more than once, the issues, caring, support and compassion are more important than the relationship in my opinion for what that's worth.
If as you say someone isn't eating then is the advise from a partner less valuable than that of anyone else, why would you feel out of place taking advise from anyone irrespective of their relationship to the PWD.
I think the site you're looking for that is "specifically at the offspring of dementia sufferers" doesn't exist because caring is universal, it know no barriers of relationship, age, colour, religion or anything else any issues anyone has with thins like that just cease to matter when you're faced with AZ.
I hope some of the people in the same position as you will post, but as I say the number I believe the number of people on here who care for a parent or parent in law are the majority.
K

 

[Jbob]

Where do I start? Is it just me or does there appear to be a lack of support aimed specifically at the offspring of dementia sufferers? I don't know any other person who has a father with late stage dementia and I am really finding it difficult to cope with the emotional challenges. I constantly search the internet looking for answer: why isn't he eating, does diarrhoea mean he's nearing the end etc etc. I know there's support groups aimed at people with dementia and their partners but not are these always in the daytime I would feel out of place if you know what I mean.I've spoken with my gp but he doesn't know my dad. Is there anyone else who is in a similar position?

Hi Mccluskey

My Dad is in the middle stages of EOAD. He was only diagnosed 16 months ago and has rapidly declined from initial diagnosis to now. He has been in a CH for the past month after wandering and having a bad fall. He is settling but i am finding his decline and change of circumstances really hard too. I have good days and bad like we all do. As my father is the youngest in his CH this makes it even harder for me to come to terms with. I find TP useful but having a relatively young father with AD i too feel like there's no one in the same situation as me (i know there will be). We are all going through the same feelings and can support each other on TP.
Keep doing a great job and remember you are not alone!

 

[jasmineflower]

If you follow the "I care for someone with dementia" section you'll find lots of sons and daughters who are caring for their parents - you will be among friends.

Most of my knowledge has been gained from all the invaluable advice that has been so kindly and freely given. TP is the only place that deals with the nitty gritty of life as a carer.