A Carers Support Group for people looking after or support parents with Dementia?

[rosebud99]

I want to set up a new network support group specifically for people to meet up who are supporting, caring or living with a parent touched by dementia. I myself look after my mother who has had Vascular Dementia for 3 years. I have been to a few dementia support groups for carers in the hope of sharing my experiences with others - I found that most of the carers who attended were looking after their wives/husbands who had dementia. I found it difficult to connect with their stories and felt that looking after a parent with dementia, was a whole different set of emotions and challenges as oppose to it being your wife/husband.

I investigated further to see if there were any support groups for carers in a similar situation to me involved in looking after a parent with dementia but there was nothing out there so want to set one up myself called 'Changing Places' (I found myself changing places and parenting my parent). This new group could help develop coping skills, insights and knowledge from talking to others who have also changed places in supporting their parents with dementia on this roller coaster journey.

Is there anyone out there in a similar situation (supporting a parent) who could share their thoughts with me about the idea of setting up a group like Changing Places specifcally for anyone supporting their parent who has been touched by dementia? Would you find it beneficial? Do you think there are different challenges with having a parent with dementia? Is there a support group where you are that has plenty of people like you to share similar experiences with? I feel there is a need but would love to hear what you think about it.

 

[RUTHMAC60]

Sounds like a good idea, I myself have become a carer to both my parents, my mum due to Alzheimer's, and to my dad, as his health has suffered as a result of looking after my mum and all of the household tasks.
Their relationship has almost completely broken down when before they were such a loving couple, but my mum is agitated and upset every day due the fact she no longer recognizes her own home, and continually asks to go home, and accuses my dad of keeping her prisoner ....
Its a very difficult situation for my dad, myself and sister as the cycle continues from morning til night, and I fear its only going to get worse

 

[Kevinl]

Hi rosebud99
I've done the parent with AZ one and am now doing the same routine with my wife, what exactly is the "whole different set of emotions and challenges"?
Someone you love has AZ has you want to do the best you can for them, it doesn't in my mind make that much difference I love/d them both that's the "connection" in their stories, you may be practicing now on a parent you in the future have to do for a partner then you'll see the connections.
I unfortunately would be ineligible to join your group my Mothers having died a couple of years ago so I guess now I'm looking after my wife I'd be someone you'd call me someone"I found it difficult to connect with their stories".
I think we might do more to help each other if we stand united rather that fractionalising into groups by age/generation or whatever.
Previous posts of mine show I have been critical of the "cardigan wearing, powdered egg eating, radio time reading and wartime blitz spirit" way of thinking and that I believe it doesn't do much for my wife or me born in the mid 50's and those younger than us.
To my mind AZ care needs Evolution not Revolution and but if you want to start the rosebud revolution then go for it lots of big things started from the grass roots.
K

 

[Dustycat]

Hi Rosebud. I am in the same boat as you. Both parents had dementia but am now just coping with my Dad as my Mam died a few months ago. I would find a support group for 'children' helpful. Good luck in your quest. Any help I can offer please let me know. Xx

 

[LYN T]

My Husband has AD, 3 of my friends have a parent with AD. We connect, we understand as we tread the same path. We face the same challenges. We share the same fears.When we meet and talk we open our minds to each others experiences. We find there are no differences.

By the way Changing Places is a name used by many councils across the country who are implementing disabled toilets/changing facilities which are large enough for both caree and carer-I thought I would let you know just in case any of your future 'clients' think that you will be holding meetings in a super-sized W C.

 

[Izzy]

My mother has vascular dementia and my husband has Alzheimer's. I think the emotions involved are different. At our dementia cafe everyone mixes.

 

[gringo]

I am concerned about efforts of this kind to form special interest groups. The problems we face are basically the same. This is the only forum where all these experiences are laid out daily for us to read and try and make sense of what is happening to those we love.
But if we start this process of splitting off groups for this or that reason, who knows where it will end. (What about a group for tired, opinionated male octogenarians?)
The strength of TP. is it’s sense of togetherness, we are stronger together, learning from each other.

 

[LYN T]

I am concerned about efforts of this kind to form special interest groups. The problems we face are basically the same. This is the only forum where all these experiences are laid out daily for us to read and try and make sense of what is happening to those we love.
But if we start this process of splitting off groups for this or that reason, who knows where it will end. (What about a group for tired, opinionated male octogenarians?)
The strength of TP. is it’s sense of togetherness, we are stronger together, learning from each other.

I'm with you on this Gringo. Strength in numbers etc.Bit of an error on my part though I thought the original poster was talking about starting an actual 'group' as in meetings etc. I didn't think that 'group' meant an AS Group. (stupid I am). I could start a group for baggy eyed,middle aged stressed females

To be honest I do learn from people whose parents are suffering from Dementia, as well as those who, like us, have spouses suffering. Of course, the support is always terrific on the main Forum.

Hope you are well Gringo

Love

Lyn T XX

 

[Linbrusco]

I'm not in the UK, but I care for my husband who has Neuro deficits from surgery and treatment for a brain tumour, and I care for my Mother with moderate Alzheimers and my father who has cognitive impairment.
All in all each one has a brain injury, but in each respect I do face similar but different emotions and challenges

I went to a Cancer Carers Support group when my husband was diagnosed.
I couldn't relate at all really as my husband was the only one with a brain tumour.
On a basic level we all cared for someone with cancer, but the challenges of a brain tumour as opposed to bowel cancer or lung cancer was poles apart.

I went to an Alzheimers Carers Support group. Carers for spouses and parents.
I gained alot from listening to each person.

However I have found the support, and information from Talking Point fantastic and I would not have gotten this far without it.
Nothing like it in New Zealand.

 

[sandrap]

Great idea I live with/care for my mum who is 91 with Alzheimer's she was diagnosed only a couple of months ago and apart from TP there is little or no support


Sent from my iPod touch using Talking Point

 

[halojones]

New Group

I do think that it is a good idea to start a new group, as I have found that when I go to the coffee mornings they are very busy,it is hard to make a connection\friends as there are so many people there...I personally don't think it would be a good idea to exclude anyone for the reasons you gave, but I understand that being in the same situation gives us more in common....I will be looking to make friends with other carers in the near future as it is lonely, and some days out together would be nice...whatever you decide to do ,its all good...!!

 

[sonia owen]

When I attend our carers group, I can come away thinking it must be harder being a wife or husband of a sufferer as they are with them 24 hours a day. But on the other hand it can be harder for us who care for a parent as we have the issues that we are not there 247 to check on so many things.Like you say our group is mainly for husband and wife carers.I am sure a parent carers group would be a good idea.
Love Sonia xxx

 

[Izzy]

I'm with you on this Gringo. Strength in numbers etc.Bit of an error on my part though I thought the original poster was talking about starting an actual 'group' as in meetings etc. I didn't think that 'group' meant an AS Group. (stupid I am). I could start a group for baggy eyed,middle aged stressed females

To be honest I do learn from people whose parents are suffering from Dementia, as well as those who, like us, have spouses suffering. Of course, the support is always terrific on the main Forum.

Hope you are well Gringo

Love

Lyn T XX

Lyn I'm the same as you. I thought the suggestion was for a physical group rather than a virtual group! I'm also with Gringo.

 

[Tin]

It is a physical group she is hoping to start, in Buckinghamshire? There is already a virtual group on tp 'caring for a parent with Vascular Dementia' ? I find the memory cafes in my area are a mixture of spouses, employed carers and children.

 

[Corriefan]

Rosebud99 I think it is a very good idea for a group for those caring for a parent. I guess if it is Bucks then it will be too far away for me.
Tin where do I find the virtual group on TP?

 

[Izzy]

Rosebud99 I think it is a very good idea for a group for those caring for a parent. I guess if it is Bucks then it will be too far away for me.
Tin where do I find the virtual group on TP?

Here's the link -

http://forum.alzheimers.org.uk/group.php?groupid=78

The groups tab is also at the top of the main page between blogs and chat room.

 

[Tin]

Rosebud99 I think it is a very good idea for a group for those caring for a parent. I guess if it is Bucks then it will be too far away for me.
Tin where do I find the virtual group on TP?

Top of this page. Forums, Blogs, Groups.

 

[Corriefan]

Thanks very much. Will check it out.